[CMLHope] Re: Mutation analysis - several questions
Rien, It would be best to wait for the next PCR result. It could be undetectable again. But if it continues to rise, the mutation analysis would be useful. But approximately 30% of Gleevec failures are due to other reasons, so it is not always the complete answer. A rising PCR would suggest the need to switch medications. Increasing from 600mg to 800mg would not likely be the right answer. You would benefit more from switching drugs. Regarding the colon cleansing, it would be best to irrigate within a couple hours after taking Gleevec. The previous dosage would be mostly eliminated at that point, and the new dosage would not have reached the colon by then. You should avoid irrigating from 3 hours to 18 hours after taking Gleevec. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Long-term PCRU
Jeannine, I think your approach is reasonable, but only for a limited time period. If it were me, I would start back on 200mg per day. If you wait for a positive PCR, then he will go back on 400mg. 200mg could keep him negative. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: CML and Green Tea
It seems that confusion over avoiding green tea for people taking CML TKI drugs (Gleevec, Sprycel, Tasigna) has come from a couple sources. One is apparently anecdotal information from a few doctors who have CML patients who drink green tea, which is a very unreliable source of data without some sort of scientific research backing it up. The other source of confusion is research showing that green tea can inhibit the proper function of a very specific class of cancer drugs called proteasome inhibitors (not TKI drugs). The one specific drug that is in this category with a known green tea interaction is Bortezomib, which is used to treat myeloma and lymphoma, and is not a leukemia drug: http://bloodjournal.hematologylibrary.org/cgi/content/short/blood-2008-07-171389v1 I have researched this issue and cannot find any support for the theory that says green tea can block or inhibit our CML drugs in any way, so I cannot agree with the theory that we should avoid green tea. A few doctors asking patients about drinking green tea, even large quantities of tea or taking extract pills, is insufficient evidence. In fact, most research shows support for green tea and its primary component EGCG. I personally do not drink it since I don't like the taste, and I do not take an EGCG tablet, so I do not have a personal bias about green tea either way. Ricardo posted an article that seems to support green tea for use in CML. That is one input, but speaking of biases about green tea, that report is from Japan, where support for green tea is a national obsession. But I have no reason to dispute the article. But people in Japan get CML at roughly the same rate as the rest of the world. >From what I can find, green tea is likely beneficial, whether actual or merely psychological. There is no sound research that provides evidence to the contrary. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: My counts have been rising and now have to take hydroxyurea along with my Tasiga
You should have a Kinase Mutation Test done to determine if a BCR-ABL mutation has occurred that causes the drug to stop working. Without this test your Onc is only guessing about the cause. Here are a couple links to descriptions of the test: http://www.bloodctrwise.org/bins/site/content/public/laboratory%20testing/test%20catalog/test%20descriptions/BCR-ABL%20Kinase%20Mutation%20Analysis.pdf http://www.genzymegenetics.com/testmenu/tests/cancer/gene_p_testmenu_can_test_BCRABL.asp?tests=%2Fcancer%2Fgene_p_testmenu_can_test_BCRABL.asp http://www.aruplab.com/guides/ug/tests/0040138.jsp The Kinase Mutation Test would show which drug would work best if you actually have a kinase mutation, since some work better than others. It is possible that Sprycel could work better. But some mutations prevent all current drugs from working, so then a clinical trial for a new drug like Ariad 24534 might be needed: http://www.drugs.com/clinical_trials/ariad-presents-preclinical-data-kinase-inhibitor-ap24534-demonstrating-inhibition-all-known-6446.html But if you have failed both Gleevec and Tasigna, you should also discuss a possible switch to Sprycel with your Onc. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Son has CML
Here is some information that could help put the diagnosis into context: http://ubb-lls.leukemia-lymphoma.org/ubb/Forum17/HTML/001519.html --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Osteoperosis
Recent studies have shown that Gleevec may actually be beneficial against osteoporosis. They found that although Gleevec seems to decrease the levels of certain minerals used in the bones, bone formation is actually improved. The studies do not measure all aspects of bone health, but the studies concluded that Gleevec could be used to help fight skeletal diseases. There is an ongoing clinical trial of bone density related to Gleevec. http://www.ncbi.nlm.nih.gov/pubmed/17049513 http://www.haematologica.org/cgi/reprint/haematol.12373v1.pdf http://clinicaltrials.gov/ct2/show/NCT00580281 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Chat Remider tonight 9:00 PM Eastern
A wind turbine generator blade for electrical power generation. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Blood in Urine
It is not common, and you are right to seek immediate advice from the doctor. This Mayo Clinic site says it can be a side effect, but check with the doctor immediately: http://www.mayoclinic.com/health/drug-information/DR601855 This Canadian site actually says to stop taking Gleevec if blood in the urine occurs: http://chealth.canoe.ca/drug_info_details.asp?channel_id=0&relation_id=0&brand_name_id=1999&page_no=2 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Medical Articles 12/23
Geeta, There are many new CML drugs in development. I think I saw the one described in the Indian news, but it was not for CML. I counted at least 17 new CML drugs in development that were discussed in the American Society of Hematologists annual meeting held this month. There are currently 3 primary drugs approved for CML (Gleevec, Sprycel, and Tasigna). Here is a summary of some of the new CML drugs that are making progress in development, but there are others not mentioned in this article: http://asheducationbook.hematologylibrary.org/cgi/reprint/2008/1/427 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Ariad AP24534 Trial in CML/Leukemia
I don't know of anyone. It just started Phase I clinical trial in May 2008, so not much data available. But AP24534 is a kinase inhibitor that apparently works against the difficult T315i mutant that none of the existing CML drugs work against. So that makes this an important clinical trial. Are you planning to enroll in the clinical trial, and do you have the T315i mutation? http://www.medicalnewstoday.com/articles/126927.php Here is what Ariad says about their drug: http://www.ariad.com/wt/tertiarypage/kinase_inhibitors --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: another question re rash
Itching has its roots in how Gleevec works. Gleevec affects fast growing cells, such as leukemic cells (very fast growing cells). Other fast growing cells affected by Gleevec include hair follicles. Gleevec affects how hair grows, and along with it comes an itch. This hair follicle itch is different than the Gleevec rash itch. Since the itch is in the follicles, I don't know of any way to relieve it except for gentle rubbing with the flat palm of the hand to prevent skin damage. If you damage the skin, you will also have itching from skin healing. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Gleevec Holiday?
You have an excellent Onc. If it were me, I would ask Dr O'Brien to do a Gleevec Blood Level Test to see how much Gleevec is getting into the cells while on 800mg. If the blood level is high on the 800mg dosage, then I would ask her to cut the dosage to 400mg and stay there indefinitely, seeing if the PCRU remained and also see if the rash disappears. The 800mg is a high dosage, and possibly more than needed for the long term. The rash could subside on the lower dosage. The holiday would also be an OK idea, and would likely show faster results if the rash is caused by the Gleevec. But there is the opportunity to see if your husband can lower his Gleevec dosage over the long term, which would have benefits regarding side effects and co-payments. The Gleevec Blood Level Test is free to US patients on Gleevec. Novartis pays for the test: http://gleevecmonitor.com/ Here are some photos of Gleevec rash (and other gross side effects): http://www.cmlsupport.com/cmlphotos.htm --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Monnosomy 7
Monosomy 7 is one of the most common secondary chromosome issues for those with CML, and it is normally transient (comes and goes). If the Monosomy 7 is confirmed by re-testing, an important question to ask the Onc is whether the Monosomy 7 is showing up in the Ph+ (leukemic) cells or in the Ph- (non-leukemic) cells. If in the Ph- cells, it is not necessarily a significant issue, and could possibly go away by itself over time. But if the Monosomy 7 is in the Ph+ cells, then it could possibly be a sign of disease progression. But since this issue is not well understood, close monitoring for any signs of progression or Gleevec resistance is important. http://online.haematologica.org/EHA13/browserecord.php?-action=browse&-recid=2648 It is unknown whether this is caused by Gleevec. There is a clinical trial starting that is trying to figure this out by testing non-CML users of Gleevec (those with an intestinal tumor called GIST) to see if GIST patients develop Monosomy 7 and other abnormalities. If they do, then that would show that Gleevec is the cause, not the CML. http://clinicaltrials.gov/ct2/show/NCT00461929 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Medicare Part D
The Leukemia & Lymphoma Society (L&LS) just started offering co-pay assistance for CML patients. Here is the link: http://www.leukemia-lymphoma.org//all_page.adp?item_id=452658 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Large Donation Funding OHSU Research
Nike founder Phil Knight has given $100M to the OHSU Cancer Center, with nearly all of it going to Dr Brian Druker's research. Dr Druker was the driving force behind the discovery of Gleevec, and a leading CML expert: http://www.ohsu.edu/xd/about/news_events/news/cancergift102908.cfm http://www.katu.com/news/tech/33531154.html http://www.ohsu.edu/health/meet-our-staff/doctors/doctor.cfm?id=10931 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: side effect?
Gleevec can affect the eyes by causing eye bleeds on the retina that will cause vision problems. I understand that it can also cause some other eye issues. I had an experience where I could not see a certain portion of what I was looking at through one eye for several minutes. I was able to look at a small object through that eye and make it disappear, although I could still see all around it. That only happened one time for me. Blurred vision can be a side effect according to Novartis' side effects pamphlet: http://www.novartis.ca/downloads/en/products/gleevec_patient_e.pdf I also found a discussion about eye problems by someone who takes Gleevec for a GIST tumor: http://gistsupport.medshelf.org/Eye_Problems --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Fwd: 13 yr old son diagnosed in August
Generally, Gleevec does the same things to children that it does to adults. But that lack of long term history with the drug prevents knowing what will happen over a very long term. But then, 7 1/2 years plus the clinical trial period of several more years does provide a lot of evidence that Gleevec is well tolerated. But this goes with my earlier statement that you will need to make a decision based on far less information than you would like to have. Regarding a CML Hem-Onc specialist for children, it might be difficult to find someone who will call himself a pediatric CML specialist. Dr Druker at OHSU was the researcher who helped develop Gleevec, and is widely regarded as one of the best CML docs available, will see any CML patient. There are others who are outstanding. But you might want to start by simply calling Dr Druker and asking him if he has any thoughts on the issue. Carolyn Blasdel is Dr Druker's nurse. Her email is [EMAIL PROTECTED] and I believe her number is (503) 494-9000. Here is some information from the L&LS about finding a specialist: http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=9872&cat_id=1215 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Fwd: 13 yr old son diagnosed in August
The difference of opinion mainly comes from a relatively short history of Gleevec, some 7 1/2 years now. That lack of history makes many Oncs nervous about predicting very long term success of the CML drugs, even though they show great results so far. BMT has become a last resort for adults, but for children the issue of long term drug therapy vs. BMT is more of an emotional one. In the final analysis, you will need to make a decision based on far less information than you would like to have, since there is no easy answer. The main positive issue for BMT is the possibility of a cure. That is a powerful motivator for some. But the negatives for BMT are a rather long list, including potentially not surviving the transplant, possible transplant failure (sometimes the transplant does not take, so no cure), the body fighting the transplanted cells and vice versa (painful and possibly debilitating graft vs host disease), potential sterility, increased risk of causing a secondary cancer, and so on. Please understand that I am not anti-transplant. It is just that there are good points and bad points to consider. If it were my child, I would not allow doctors to rush a decision. The window for BMT will not close quickly if no decision is made right now, so there is no reason to feel pressure to make a decision right away. The good news is that you have time to consider this carefully, since your son is responding well to Gleevec. Maybe you even have time to allow your son to make his own decision as he matures over the coming years. In reality, there is no right or wrong answer to this dilemma, but making an informed choice is important. Part of the choice depends on whether there is a "perfect match" marrow donor, defined as a 10 out of 10 human leukocyte antigen (HLA) match. The highest liklihood is from a sibling, whereby there is a 1 in 4 chance of a perfect match. Otherwise the odds get slim, although not impossible to match an unrelated donor somewhere in the world. So if he has siblings, I would pursue HLA typing for them to determine potential marrow donor status. This would be a good idea even as a back-up plan. Parents are not normally matches since they each have only 1/2 of the required genetic make-up. There is also the possibility of using cord blood stem cells. Here are some previous discussions on this site about transplant for children: http://groups.google.com/group/CMLHope/search?hl=en&group=CMLHope&q=child+transplant&qt_g=Search+this+group Here are some online resources to help understand the transplant process and issues: http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-tran... http://www.bmtinfonet.org/bmt/bmt.book/chapter.7.html http://www.mdanderson.org/departments/bmt/display.cfm?id=D176629C-8E4... http://cpmcnet.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Diseas... http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1... http://www.cancerhelp.org.uk/help/default.asp?page=4852 http://cancerguide.org/bone_marrow.html http://www.patient.co.uk/showdoc/27000829/ http://www.cancerbackup.org.uk/Treatments/Stemcellbonemarrowtransplants/Generalinformation Sometimes it helps children to understand that they are not alone, and that other children share their same problem. Approximately 3800 children are diagnosed with all types of leukemia each year in the United States, and many more around the world. There are over 1000 children and teens with CML in the US, and thousands in other countries. You can find other children with CML and other forms of leukemia, read their stories, and talk with them at the following websites: http://www.newcmldrug.com/Children/Default.asp http://www.childrenwithcml.org.uk/forum.asp?slevel=0z81&parent_id=81 http://www.cancercompass.com/message-board/message/all,3049,0.htm http://www.kidscancernetwork.org/yourstory.html http://www.acor.org/leukemia/sites2.html http://cmlblog.spaces.live.com/default.aspx http://www.childrenshospital.org/az/Site2170/mainpageS2170P0.html https://www.teenagecancertrust.org/health-info/resources.php --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: PCR baseline
It seems clear that your PCRs are increasing steadily, and a 1 log increase will usually suggest that the issue should be investigated. I would ask your Onc to perform a Kinase Domain Mutation Analysis (also known as a Gleevec Resistance Test), and ARUP Labs does this test. Here is a link: http://www.aruplab.com/TestDirectory/resources_testDirectory/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf The test will show if you have a Gleevec resistance mutation. If so, you will need to switch drugs. If not, you could increase Gleevec dosage, or you could still switch drugs. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: debilitating fatigue, but good therapeutic response, with gleevec
You might want to ask your Onc if you could split your dosage, and take 200mg morning and evening. That has helped minimize my side effects, and I have been PCRU on this regimen for over 2 years. The 400mg pills break in half easily, but I ask for the 100mg pills so I can take 2 at a time. Otherwise, your HGB is not that low for taking Gleevec (same as mine), and it will likely stay low over the long term. I have found that the harder I fight the fatigue with exercise the better I feel. Very hard to do at first, but it has worked well for me. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: How meaningful is this PCR increace
I see from a previous posting that you were 36/1000 in Nov 2004, and then you went to 3.4/1000, and now are back to 25/1000. Most Oncs will give the PCR results as a percentage, and I can't be sure about converting your result to a percentage, but your current result is probably 2.5% -- ask your Onc about that. Whatever the answer, you have increased approx 1 log from your best PCR result, and your past two PCRs have increased. Many Oncs would look at that as worthy of investigating. I would talk to the Onc about: 1) having a Kinase Domain Mutation test done to check for drug resistance (see link below for one lab's explanation of the test) http://www.aruplab.com/TestDirectory/resources_testDirectory/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf 2) depending on what the drug resistance test shows, possibly increasing dosage or switching to another drug --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Medical Articles 10/10
I would suggest that you start a new post and use a different title. Very few people here would see your posting under this title. There are several here who have had a BMT. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: My son Status - Bad news
We all would like to see the PCRs drop steadily, but sometimes they don't. Your son's PCR is only up very slightly, so I would not call this a big setback. You will want to see the next PCR number before you get concerned about it, since it could easily start to drop again. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Gleevec or Dasatinib
Timothy, Per your question above, here is some info on phosphate levels and bone health related to Gleevec: http://www.gistsupport.org/ask-the-professional/gleevec-and-bone-health.php I would be very interested in seeing the source for the liver toxicity data you cited since it does not track with what I have seen so far. Thanks in advance. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Help for doing BCR ABL Mutation
I believe that the Department of Haematology, Imperial College London, London, UK does CML Kinase Domain Mutation testing and PCRs. http://jcp.bmj.com/cgi/content/abstract/61/7/863 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Gleevec or Dasatinib
Sheila, FDA still only allows Sprycel and Tasigna to be prescribed after Gleevec has been tried first. That will probably change in the near future, since several studies have shown they would all be effective as first-line therapies for CML. http://www.eurekalert.org/pub_releases/2007-12/uotm-dns120707.php Regarding side effects, there is a recent article that has a good side- by-side comparison of the 3 drugs: http://www.hemonctoday.com/article.aspx?rid=30195 This shows that Sprycel does not cause the muscle cramping or rash problems that Gleevec has as side effects. But Sprycel can be harder on the liver, can cause lower phosphate levels (necessary for electrolyte balance and good bone health), and has worse fluid retention issues (including fluid build-up in the lungs) compared to Gleevec for some people. Gleevec causes worse bone and muscle pain. Tasigna seems to have the lowest overall side effects unless a person has some specific heart related issues. But overall, these side effects can vary from person to person. Generally I would not be afraid of Sprycel, but you should review the comparison for yourself and let your Onc know what you prefer. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit
Here is the FDA warning: http://www.fda.gov/medwAtch/safety/2008/epo_DHCP_03102008.pdf Since Procrit and other anemia drugs are mainly used by people on chemotherapy, you and your doctor would need to discuss whether the risks cited by the FDA apply directly to your situation, and whether those risks outweigh the benefits for your case. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: what's the importance of BCR ABL Mutation Analysis?
Here is a guide that many Oncs use for managing CML, especially when there are issues such as loss of response: http://www.nccn.org/professionals/physician_gls/PDF/cml.pdf See page 12 for your issue of increasing PCR numbers. If you are only slightly positive then waiting for another PCR might be the right approach. But if you have gone from PCRU to a PCR that has increased more than 1 log (above approximately .01%) then both a bone marrow biopsy (BMB) and a Kinase Domain Mutation Test are a good idea. Zavie's points about T315i and losing valuable time are important. Since you are at the max dosage of Gleevec, increasing your Gleevec dosage is not an option. So your Onc is right that Sprycel is most likely the best course, but how does he really know? If you have T315i mutation, you would need to pursue other non-drug options, and speed would be important. Also, there could be chromosome changes that only a BMB would show. If it were me, I would press for the BMB and mutation test. Here is a link from one lab that performs Kinase Domain Mutation testing (there are several others): http://www.aruplab.com/Testing-Information/resources/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Ups & Downs & What Next?
If the increases are less than 1 log (for example from .007 to .07 is a 1 log increase), then Oncs do not normally tend to suggest a change. If the increases are miniscule, then there is no cause to be overly concerned. Was a Gleevec "resistance test" done to determine why Gleevec stopped working? If not, you could ask your Onc about performing such a test. Here is one lab's description of it: http://www.aruplab.com/TestDirectory/resources/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf Regarding your stem cell harvest and transplant/GVHD, I assume you mean that his own stem cells were harvested. If so, there is no GVHD with a re-infusion of one's own cells, since your body cannot reject your own cells. But this type of transplant is not for a cure, but rather is only used if the CML progresses into blast phase and other transplants are not feasible. But anyway, it is premature to be so concerned about that since you say the increases are miniscule. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: ALLOPURINOL ? Sodium polystyrene sulfonate (e.g.Kayexalate)
No wonder it makes you sick. Just reading about it made me want to throw up: http://en.wikipedia.org/wiki/Kayexalate It is basically powdered plastic and is used as a binder to make cement stronger. When taken internally, it takes in potassium and calcium and puts out high levels of sodium (salt) into your digestive tract. Since it absorbs things like calcium and potassium, there is a good chance it would also absorb Gleevec and reduce its effectiveness. If you continue to take it, I would suggest not taking it within several hours of taking Gleevec. If it were me, I would ask for something else, or take it only in enema form. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: ALLOPURINOL ?
Allopurinol is only needed during the first 2 or 3 weeks of taking Gleevec or other CML drugs, for the reasons Chuck stated. http://www.answers.com/topic/allopurinol It will not help your current condition unless you have gout or high uric acid levels for some reason. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit and myeloid Leukemia
The problem is that Aranesp, Epogen, and Procrit -- three common drugs used to treat anemia and platelet problems -- have been under attack from the Food and Drug Administration because they have caused problems for some patients. Insurance companies are responding to the FDA warnings about these drugs. Here is an article: http://topics.nytimes.com/top/reference/timestopics/organizations/f/food_and_drug_administration/index.html?query=PROCRIT%20(DRUG)&field=des&match=exact --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: hi potassium in blood?
You can read about excess potassium issues (also called Hyperkalemia) at this link: http://en.wikipedia.org/wiki/Hyperkalemia Hyperkalemia can be associated with kidney issues, so you should ask your doc to check for any kidney issues. It can also occur when a person has high platelets, as you have had recently. There is also a Pseudohyperkalemia (false high reading) that can be caused by excessive fist clenching during blood draw or having a tournequet too tight or on for too long: "Pseudohyperkalemia is a rise in the amount of potassium that occurs due to excessive leakage of potassium from cells, during or after blood is drawn. It is a laboratory artifact rather than a biological abnormality and can be misleading to caregivers. Pseudohyperkalemia is typically caused by hemolysis during venipuncture (by either excessive vacuum of the blood draw or by a collection needle that is of too fine a gauge); excessive tournequet time or fist clenching during phlebotomy (which presumably leads to efflux of potassium from the muscle cells into the bloodstream); or by a delay in the processing of the blood specimen. It can also occur in specimens from patients with abnormally high numbers of platelets (>1,000,000/mm³), leukocytes (> 100 000/mm³), or erythrocytes (hematocrit > 55%). People with "leakier" cell membranes have been found, whose blood must be separated immediately to avoid pseudohyperkalemia." --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: In the beginning
CML causes fatigue for a couple reasons. First, although there are lots of white cells, most are leukemic cells, and they are dysfunctional. That is, they are not able to carry out their required functions very well. Leukemic WBCs essentially do not mature enough to work very well. Secondly, because the body has too many cells in the bloodstream, it tries to compensate by slowing cell production where possible. But it can only control the production of the good cells, including red cells. So the body produces fewer good WBCs and fewer RBCs. As a result of decreased RBC production, the person becomes anemic. At diagnosis the WBC is high (due to uncontrolled growth of leukemic cells) and the RBC, HGB, and HCT are usually low (anemia), and therefore fatigue is an issue. It can take a long time to recover from this low RBC production, and Gleevec/Sprycel/Tasigna can also impact those levels. That causes some to live in a state of continual anemia, especially women. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: What Should I DO?
Sounds like you have become resistant to Gleevec. You should ask your Onc to perform a Gleevec resistance test (also called a Kinase Mutation Test). Here is one lab's description of the test: http://www.aruplab.com/TestDirectory/resources/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf A switch to Sprycel or Tasigna is likely needed. Going up to 800mg probably will not work. You also should probably have a BMB if you have not had one in the past year. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: can someone comment on my cbc report thanks
Generally, as you have noted, you have slightly high WBCs, which are mainly due to a high neutrophil count (neutrophilia). Since you have increased Gleevec dosage to 600mg somewhat recently as I recall, you could expect some CBC issues, but normally you would expect the WBC to drop, not increase. You show signs of anemia (low HGB and HCT), even though RBC is normal. The high neutrophil count could be caused by an infection, injury, kidney problems or other issues, so you should not rule those out. If you cannot recall recent infections or injury, I would encourage you to ask the docs to figure this out by doing some testing. Your WBC is just slightly high, but it can also be a sign of Gleevec resistence when WBC steadily rises, especially after increasing the Gleevec dosage, and coupled with your recent platelet issues it deserves attention. I could not find your latest PCR, FISH and BMB info here -- what is your recent history for these tests? You might want to discuss with your Onc having a PCR and also a BCR-ABL Mutation Test (aka, Gleevec Resistence Test). Here is one lab's description of the latter test (there are also other labs that do it): http://www.aruplab.com/guides/ug/tests/0040138.jsp --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Test Results
That is still an outstanding result. In log reduction terms, probably a 4 log reduction. Sometimes a PCR test finds the needle in the haystack. I donated blood for CML research at NIH where they did 15 separate PCRs on one tube of blood. I had been PCR undetectable for nearly a year at that time. Of those 15 separate PCRs on that one tube of blood, one PCR showed up as "weakly positive". These things just work that way. That is why trends are the better measure of progress. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Drug
While you are waiting for replies from others using Tasigna/Nilotinib, here are links to searches for previous discussions about it on this Board: http://groups.google.com/group/CMLHope/search?hl=en&group=CMLHope&q=nilotinib&qt_g=Search+this+group http://groups.google.com/group/CMLHope/search?hl=en&group=CMLHope&q=tasigna&qt_g=Search+this+group --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Thanks for your responses
Besides the low dosage issue, you might also want to ask the Onc to do a "Mutation Analysis" to see if Jim has become resistant to Gleevec. If so, he would need to switch drugs. Here is a discussion of this test: http://www.aruplab.com/TestDirectory/resources/TechnicalBulletins/BCR-ABL1%20Kinase%20Domain%20Mutation%20Jan%202007.pdf --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: back pain
Given your zero PCR, it seems unlikely that the MRI "infiltrate" is from the CML. I would go to a spine specialist to sort out the issue. It could be several things unrelated to CML. The MRI conclusions could have been skewed by knowing that you have CML and making assumptions. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Relapse after BMT
Relapse occurs in approximately 10 - 20 percent of patients transplanted during the chronic stage of CML, and a higher percentage of patients transplanted in later stages. As Julie indicated, generally the first thing the docs should try is a Donor Leukocyte Infusion (more blood cells from the sibling who was the original donor), and of course, Gleevec, Sprycel, or Tasigna. If the DLI does not work, then drug therapy will likely be the regimen. If the patient has no response to drug therapy, a second BMT from another donor could be done, or a clinical trial for investigational drugs or therapies could be an option. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: grapefruit
Rien, Bob has given you the answer your doc would likely give, so it is the right answer. So remember that as you read the next paragraphs. But just FYI, there are other recommendations out there. The following link says about Gleevec: "Grapefruit, grapefruit juice, and caffeine-containing products also should be avoided for one hour before and one hour after taking the drug." http://www.ons.org/patientEd/Treatment/PatientMeds/imatinib.shtml Other sites explain that the issue with grapefruit juice is not that it interferes with Gleevec's function, but that it actually might make it more potent by decreasing the rate at which it is removed from the bloodstream. The following link and quote below explain this issue (and by the way, one would wonder, if some people need 800mg instead of 400mg, what would 400mg plus grapefruit juice do? Would it work like 800mg or more? I don't know the answer, but it is an interesting question, and with the high price of Gleevec, it would be nice to know the answer.): http://www.itmonline.org/arts/herbdrug.htm "GRAPEFRUIT JUICE AND DRUGS The discovery that grapefruit juice could alter drug metabolism was the serendipitous result of using the juice as part of a placebo preparation in a drug test conducted in Canada (4). The drug felodipine (vasodilator, diuretic; used for hypertension) was being evaluated for interactions with alcohol. Alcohol did affect the way the drug functioned, resulting in more side effects, mainly postural lightheadedness due to hypotension. The plasma concentrations of the drug in the placebo group that had received grapefruit juice rather than alcohol, were surprisingly high. The same researchers then performed a follow-up study (5) using either grapefruit juice or orange juice; the grapefruit juice increased the bioavailability of nifedipine (similar to felodipine; both are calcium antagonists) by an average of 284% (that is, there was nearly 3 times the amount in the blood of those who consumed grapefruit juice as those who consumed water). Orange juice had no such effect, indicating that it was a particular component of grapefruit juice that was responsible for this marked effect. In the 10 years that followed, numerous drugs were found to respond the same way to grapefruit juice (100 medical journal articles around the world either described new findings of drug interaction or reviewed the growing number of cases). Adverse effects of combining grapefruit juice with drugs have been reported for calcium antagonists (used for lowering blood pressure), the benzodiazepines midazolam and triazolam (for depression), and terfenadine (antihistamine for allergies). The adverse effects are due to the greatly increased amount of drug in the bloodstream due to inhibited drug metabolism. The intentional combination of grapefruit juice and a lowered drug dose might yield a desired result of proper plasma levels of the drug with lower amounts ingested (hence, lower drug costs): this is an area of active research." --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: combination of interferon and glivec
Livia, They are the same thing. Pegasys is a brand name for Pegylated interferon-alpha-2b. Pegylated interferon-alpha-2b is simply a longer lasting form of interferon-alpha-2b. The "PEG" in Pegylated stands for polyethylene glycol (PEG), which is added to prolong the effects of the interferon-alpha-2b so it only needs to be injected once a week, rather than three times each week for conventional interferon- alpha. http://en.wikipedia.org/wiki/Interferon --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Hand cramping
Hand cramps (or any muscle cramp) can be caused just by the Gleevec -- it does not require interaction with anything else. I often need to pry my fingers off an object with the other hand. Writing and using tools will often cause hand cramps. I would see if he can alter his utensil holding technique, to use the fingers in a flattened out mode. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Rachel and what to do....again.
We appreciate the update on Rachel. Most of what you described would generally be attributed to the chemotherapy, especially since she has mostly stopped taking Gleevec about a year ago. The evidence of Gleevec causing delayed puberty seems to be inconclusive, but it cannot be ruled out completely. It is also possible that the CML itself could be having some effect on the timing of her development. Most likely the chemo has caused delays that she may now be starting to recover from, and possibly the HRT is helping. Sounds like there are some encouraging signs in her development. Regarding the armpit hair growth, since Gleevec does have an impact on hair follicles and can sometimes stimulate hair growth. Some of us have noted unusual hair growth in ourselves. Even though she is not taking Gleevec, it might have caused a stimulation in hair re-growth. Possibly there is also interaction with the HRT. That could be a reason she might consider to re-start taking Gleevec. Below are some resources that might be helpful, and help you formulate questions to ask the doc: http://www.marrow.org/PATIENT/When_Child_Needs_Tx/Possible_Late_Effects_of_Your_/index.html http://www.leukemia-lymphoma.org/attachments/National/br_1098117804.pdf http://www.youngwomenshealth.org/cancer.html Regarding Rachel not taking Gleevec, it is interesting that her CML has remained stable. I know it has been 7 years since she had the BMT & DLI infusion, but it makes one wonder if there could be some lingering effect -- maybe not, but that would be an interesting study. But it is definitely not the recommended approach to stop therapy, and she should see if there are any clinical trials that would be conducted in a controlled manner if she wants to prove any theories. And as suggested, close monitoring of the CML is very necessary. We all hope Rachel will do well. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: platelets are rising again Giant Platelets?
Giant platelets are those which are approx 7 - 10 times normal size. They do not function very well, so if there are large numbers of them in the blood, you could bruise and bleed more easily. I would ask if they were present in small or large quantities. If there are only a small number, then that is no big deal. If there are lots of them, be careful about cuts. Folks with CML can have some giant platelets, especially at diagnosis, but should go away over time. If platelets are out of whack, this is probably associated with that general issue. Increasing the dosage of Gleevec can change the platelet counts; for some they decrease and in others they can increase. Platelets are not formed directly, but rather they start out as huge cells called megakaryocytes (meaning "huge cell"). These megakaryocytes are then "crushed" in the bloodstream and lungs to form approx 1000 fragments, which are the platelets. By the way, that is why many of us had an unexplained cough prior to CML diagnosis, because coughing breaks up megakaryocytes in the lungs faster, and also the megakaryocyte nucleus is disposed of in the lungs after being crushed into platelets. Platelets form sticky edges when there is a wound, and clump together to stop the blood flow at the wound site. The body then repairs the site and removes/discards the dried platelets (scab). http://www.chelationtherapyonline.com/GarryGordon/KarlLorenResearch/p32.html --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: just got my cbc report back it is the worst I've ever had
Jeanie, Increasing the dosage of Gleevec will often suppress the counts of the granulocyte cell lines (neutrophils, eosinophils, basophils), but will not normally affect the lymphocyte cells (T-cells, B-cells, etc) by creating either smudge cells (fragile lymphocyte cells that break open easily) or atypical lymphocyte cells (odd sizes, shapes, or nucleus), neither of which are normally associated with CML. I would ask the doc about the smudge cells and atypical lymphocytes. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: generic imatinib
Novartis has several patents on Gleevec, but generally the main patent expires in 2015 (it was extended from the original expiration date of 2013). As mentioned, it was granted "orphan drug" status, meaning that since it has a relatively small population that requires such a drug. Patent law is more favorable to companies that invest in development of new drugs to fill these "orphan drug" needs. By the way, this also explains something about Sprycel and Tasigna. Sprycel is made by a competitor of Novartis (Bristol Myers Squibb), so it had to work differently than Gleevec, and it does. But Tasigna is made by Novartis, and it works like Gleevec, only with a stronger binding capability. If Tasigna had been made by another company, it would have violated the Novartis Gleevec patent. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BMB question
Here is a recent article with the latest thinking on monitoring CML patients, including BMBs. Look especially at the paragraph titled: "A hybrid approach": http://bloodjournal.hematologylibrary.org/cgi/content/full/111/4/1774 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: how necessary are bone marrow biopsies?
I think Daniel is reflecting what most of us see happening. Namely, the 12 month BMB for patients who are responding well seems to be disappearing, even though some continue to cling to the more conservative approach of doing a BMB every 12 months. Dr Druker's patients report that he stretches BMBs out to 18 - 24 months after the first year for those who have responded well to drug therapy. Dr John Goldman has stated that annual BMBs are no longer mandatory after achieving CCR. Dr Kantarjian at MD Anderson says that BMBs can be done every 2 years after CCR. These are the folks I would trust with setting the direction of CML monitoring. By the way, something we have not previously discussed is that BMB analysis is fairly inaccurate by testing standards. BMBs have an error rate of 15% because it is a very manual process. So one could question the usefulness of BMBs for those responding well based on error rate alone. Here is also a new article that discusses practical CML monitoring. It also has a good description of CML testing methods: http://bloodjournal.hematologylibrary.org/cgi/content/full/111/4/1774 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Sprycel and Gastro Problems
It is likely too early to tell. You will need to give it a few weeks to know for certain if you cannot tolerate Sprycel. Even then, some need to start-stop-restart if the first response on the new drug is not positive. You could also experiment taking it with either a little or lot of food, and little or lots of water, to see which works best for you. We wish you well. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: how necessary are bone marrow biopsies?
Daniel, Just to add a couple items. BMB certainly looks for things that PCR and FISH cannot see, as outlined above. The best uses of a BMB are at diagnosis (where it is very necessary) and after that for early detection of additional chromosomal mutations that might infer potential disease progression to the next stage. After the first year, if the CML patient is doing very well (especially PCRU) the BMBs are spaced out to approx 18 months. Your question is a reasonable one, since there is some question about how useful this BMB information is when a patient is doing well, since most additional chromosomal mutations are merely monitored anyway, and PCR is a good indicator of relapse for those in a minimum residual disease (MRD) status. Having an occasional BMB is a conservative approach. Researchers and Oncs are still trying to figure out this whole CML post-Gleevec world, since it changed all the rules not so very long ago. Also, you suggested BMB cytogenetics might test for bcr-abl point mutations, but it does not. That requires a special test for a specific bcr-abl mutations that lead to Gleevec (or other drug) resistance. These are generally only done if someone starts to relapse while using drugs. http://www.mdanderson.org/labs/mdl/display.cfm?id=71632d50-a515-4193-9e83ea7cdf9c8cc2&method=displayfull&pn=ea864a7d-948b-4aff-a498d5a91f875239 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: CML Patients SPEAK OUT Survey
Just to clarify, the survey says that CML patients from the USA do not qualify. I assume this is only for Canadians. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BMB results after 4% positive FISH
That is very good news -- thanks for updating your progress. The previous 4% positive FISH would seem to be a false positive reading. ARUP labs is a large, international lab. PCR results cannot be compared directly among labs, especially when different control genes are used. G6PDH is not used as much anymore; most labs seem to prefer ABL or B2M. But in general, a low PCR result is a good one from any lab. I see that ARUP does not provide a standardized log reduction -- that would help normalize the result with other labs. Again, very good news. Here is ARUP Lab's CML quantitative PCR info: http://www.aruplab.com/guides/ug/tests/0051066.jsp --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Somewhat Newly Diagnosed
Here are some previous discussions about disability and CML: http://groups.google.com/group/CMLHope/search?hl=en&group=CMLHope&q=disability&qt_g=Search+this+group --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: G250E Mutation and Goodbye Gleevec!
The G250E mutation is one of the common bcr-abl mutations that limits Gleevec effectiveness, so a change is necessary. Both Sprycel (Dasatinib) and Tasigna (Nilotinib) work well against it. From what I have seen, Sprycel worked somewhat better in clinical trials for this mutation (see 2nd article below). Sprycel may be a better choice since it binds to bcr-abl differently than Gleevec, while Tasigna binds similarly to Gleevec, just more strongly (an over- simplification, but maybe useful). Here is a good article on the resistance issue: http://asheducationbook.hematologylibrary.org/cgi/content/full/2007/1/371 Here is an article with a chart showing overall mutation response during a clinical trial of Sprycel and Tasigna (see last line of the chart on 4th page): http://www.communityoncology.net/journal/articles/0308519.pdf --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: 5 new messages in 5 topics - digest
Your results are more than a 4 log reduction and at the low end of detectability. It is certainly reason to celebrate. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: What's used for CLL?
Maybe a short overview is warranted. Leukemia is a blood cancer. Cancer has two things in common -- certain cells in the body become abnormal, then the body produces large numbers of abnormal cells. In leukemia those abnormal cells are blood cells. When leukemia affects the lymph cells, it is called lymphocytic leukemia. When marrow (myeloid) cells are affected, the disease is called myeloid or myelogenous leukemia, such as CML. The four main forms of leukemia are: Chronic myelogenous leukemia (CML), Acute myelogenous leukemia (AML), Chronic lymphocytic leukemia (CLL), and Acute lymphocytic leukemia (ALL). Recently, other rarer classes of leukemias have been defined. Leukemia develops when a genetic change occurs in the DNA of a blood stem cell (either lymph or myeloid), then the body produces large numbers of abnormal blood cells which do not function properly. In CML the 9,22 translocation creates a Ph+ stem cell that produces leukemic myeloid blood cells. In CLL it can sometimes be a chromosome translocation, but most often it is a chromosome deletion. If the CLL patient has a translocation, the prognosis is worse. Treatment for CLL is usually chemotherapy, but it is not very effective, and CLL is generally not curable. BMT is not very effective. Survival is generally only a few years after diagnosis, but some rare forms are not very aggressive, so survival can be much longer in those cases. Most CLL patients die from infection as their immune system loses effectiveness over time. You can see that CML is "fairly simple" compared to CLL, which can be very complicated. We are fortunate that so much is understood about CML compared to other leukemias. Our drugs can shut down the CML production line, whereas other leukemias have no such targeted drugs. So the overall prognosis for CLL is poor, but the best hope is that the person has the rare non-aggressive form of CLL. You can read more: http://www.leukemia-lymphoma.org/all_page.adp?item_id=7059 http://www.webmd.com/cancer/tc/leukemia-chronic-lymphocytic-treatment-health-professional-information-nci-pdq-treatment-option --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Interferon and chemo
The IRIS Study has shown that Gleevec is far superior to the previous drugs. Even if people initially responded to Interferon, Ara-C, and Hydroxyurea, these responses were not as deep and durable as with Gleevec, so long term survival rates were poor when compared to the 95% overall survival rate for Gleevec. Besides the lack of long term benefit, many people could not tolerate the side effects from those drugs. Hydroxyurea is still used for some at initial diagnosis when WBC counts are extremely high to gain a rapid reduction in leukemia cells, but then Gleevec is used soon after that. There are a few who beat the odds on earlier drug therapy, but they were rare cases, and their quality of life was often poor. http://www.sciencedaily.com/releases/2007/12/071210094338.htm --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New CML Video + Other Resources
More useful information: Interview 2008 With Dr Cortes, MD Anderson: http://www.medscape.com/viewarticle/568343?src=mp Multiple Articles on CML Issues: http://www.cancerpublications.com/newsletter/hematological/clm_journal/v7s2/index.html --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] New CML Video + Other Resources
A recent CML video presentation (Dec 2007) by Dr Jerald Radich, Fred Hutchinson Cancer Research Center, is worth viewing: http://www.medscape.com/viewarticle/564100 Here are abstracts related to CML from the annual meeting of the American Society of Hematology (ASH) held in Nov 2007 (thanks to the UK CMLSupport.org group): http://www.cmlsupport.org.uk/?q=ash This article discusses CML drug resistance and has some interesting illustrations: http://www.cmlsupport.org.uk/?q=system/files/Mechanisms+of+Resistance+-+Imatinib.pdf --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: RESULTS OF FLOW CYTOMETRY REPORT please explain?
Jeanie, Regarding your confusion about conflicting tests, Timothy's excellent analysis indicated that the flow cytometry test showed nothing unusual. This is good news, of course. But that does not mean your PCR would be negative. Your previous posting said your BMB FISH recently came back positive, and you are still waiting for PCR results. The flow cytometry was done because of the FISH report (you did not provide the FISH numbers -- possibly it could be a false positive if less than 5%). This flow cytometry was trying to determine if your leukemia had changed into something more aggressive, which it did not show (good news). The PCR measures leukemia levels in a very sensitive manner, and tests very differently than the flow cytometry. So do not be surprised that your next PCR could be positive. So there is good news to be grateful for, but you may still need more testing to determine if you have other issues if your PCR result rises significantly. If so, possibly a BCR-ABL Mutation Test is needed. If the PCR is good, maybe the FISH was a false positive. Flow Cytometry Info: http://www.answers.com/topic/flow-cytometry?cat=health --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Doing QPCR
You might be able to have the quantitative PCRs done in Europe more easily (possibly France, due to embargo on Iran by some countries, including USA). Also, shorter shipping times help ensure a more accurate result. Here are some labs in France that deal with CML: Laboratoire de Cytogénétique Médicale, Faculté de Médecine, Clermont- Ferrand, France Service drsquoHématologie clinique, Centre Hospitalier de la Côte Basque, Bayonne, France Laboratoire de Génétique des Hémopathies, CHU Purpan, Toulouse, France Laboratoire de Biologie Moléculaire, Institut Paoli-Calmettes, Marseille, France --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: positive FISH test
A 4% positive FISH could possibly be a false positive, since it has approx 5% margin of error. But you should not assume that is the case, but should have a PCR done, and a BMB is also a good idea if you have not had one recently. You might also want to have a Gleevec Resistance Test, since that is a major reason why Gleevec starts losing effectiveness. Here is the Genzyme and Quest labs info on that issue: http://www.news-medical.net/?id=15885 http://www.questdiagnostics.com/hcp/topics/hem_onc/leumeta.html (see first test listed) Your last PCR was done 8 months ago -- PCR should be done every 3 months, especially if you are still positive by PCR. I wonder why a FISH was done at all, since PCRs should be done at your level of PCR value (Major Cytogenetic Response). You could also ask your Onc to increase dosage in the meantime while tests are being done just to take a conservative approach. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Transplant
Deb (and others), Here are some online resources to help understand the transplant process and issues: http://www.cancer.gov/cancertopics/factsheet/Therapy/bone-marrow-transplant http://www.bmtinfonet.org/bmt/bmt.book/toc.html http://www.mdanderson.org/departments/bmt/display.cfm?id=D176629C-8E4C-11D4-80FA00508B603A14&method=displayFull http://cpmcnet.columbia.edu/dept/medicine/bonemarrow/bmtinfo.html http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Lrn_about_Disease/CML/CML_Transplant_Outcomes/index.html http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1/226 http://www.cancerhelp.org.uk/help/default.asp?page=4852 http://cancerguide.org/bone_marrow.html http://www.patient.co.uk/showdoc/27000829/ http://www.cancerbackup.org.uk/Treatments/Stemcellbonemarrowtransplants/Generalinformation --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New Year News/ Jonathan
For those of us who have followed Jonathan's story it is very heartening to hear that he is growing and doing well. Thanks for letting us know. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Need your advice, 11 years old boy with CML
Sometimes it helps children to understand that they are not alone, and that other children share their same problem. Approximately 3800 children are diagnosed with all types of leukemia each year in the United States, and many more around the world. There are over 1000 children and teens with CML in the US, and thousands in other countries. You can find other children with CML and other forms of leukemia, read their stories, and talk with them at the following websites: http://www.newcmldrug.com/Children/Default.asp http://www.childrenwithcml.org.uk/forum.asp?slevel=0z81&parent_id=81 http://www.cancercompass.com/message-board/message/all,3049,0.htm http://www.kidscancernetwork.org/yourstory.html http://www.acor.org/leukemia/sites2.html http://cmlblog.spaces.live.com/default.aspx http://www.childrenshospital.org/az/Site2170/mainpageS2170P0.html https://www.teenagecancertrust.org/health-info/resources.php --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Thrombocytopenia
Between the Gleevec side effects and Lupus, no wonder you are fatigued. Both suppress WBC, RBC, and platelets. Hopefully your Onc has stopped your Gleevec until your platelets recover. Sometimes a Gleevec vacation will get things back on track. But if it does not straighten out soon, then I would ask the Onc about switching to Sprycel to see if it works better. Sprycel does not affect platelets the same way Gleevec does. Here is some info on Lupus and symptoms: http://www.lupusmn.org/Education/Articles/WhataretheSignsandSymptomsofLupus.htm You should also be tested to see what type of anemia you have. With your RBC count way below normal, you are certainly not getting enough oxygen in your body. You may need to also be taking supplements (usually iron and/or folic acid -- but get an anemia test and ask your Onc what is needed). The BMB suggestion seems like a good idea, if one has not been done recently. Here is what the FDA says about Gleevec. See paragraphs 5.3 and 6.2 especially: http://www.fda.gov/medwatch/safety/2007/Sep_PI/Gleevec_PI.pdf --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: CML SPECIALISTS
A search of CMLHope gives the following references for discussions about specialists: http://groups.google.com/group/CMLHope/search?hl=en&group=CMLHope&q=specialists&qt_g=Search+this+group --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: combination of interferon and glivec
Livia, You said that your current PCR is 0.4/1000 and was previously 0.1/1000 Your Nov 26th posting said "My result from May said 0.1 copies per 1,000 copies ABL. The PCR from August that I received today said 0.4 copies per 1,000 copies ABL." Lab results are not normally displayed in these ways because it is very confusing. You need to divide the numbers, and then they will be shown as .0004 and .0001 If these are already percentages, then these numbers actually are both more than a 4 log reduction, and very close to undetectable. If they are not already percentages, then they are .04% and .01% You should double check this with your Onc to see which it is, because I cannot tell from your information. It is ridiculous that labs and Oncs confuse patients by not making the results easily understood. So you could be doing much better than you think you are. Greenie, Molecular test should be the PCR. Not sure what "no plus or minus" means, but it sounds like a test failure (could be not enough sample, or sample degraded, or a lab problem, or other human error). You should ask what it means, and whether the blood sample can be done locally and shipped to them. That is not a problem for test results, but a clinical trial Onc needs to maintain very strict controls to eliminate variables in the trial, so may not allow it. But you should try anyway. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: broken rib
Gleevec can interfere with bone strength, especially those taking higher doses. It is probably a mixture of already having a problem with osteoporosis and Gleevec making the problem worse. http://www.spine-health.com/news/osteoporosis/art532621.html --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Stopping Gleevec
A reduction to 400mg would seem reasonable as long as he did not have an initial reason for the 600mg dosage, namely that 400mg was not doing the job. I would definitely ask the Onc about reducing the dosage to 400mg. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Stopping Gleevec
Going off drug therapy will most likely result in relapse for the majority of folks with CML. But a few have done it and have remained free of CML, some of them for years. The reason is not clear. There was a clinical trial in 2005 that took 12 people off Gleevec who had been PCR undetectable for over 2 years to see how many would relapse. They had monthly PCRs to carefully watch for signs of relapse. Half relapsed within a few months, but the other six did not relapse at all. Here is the article: http://bloodjournal.hematologylibrary.org/cgi/reprint/blood-2006-03-011239v1 Dr John Goldman, one of the most respected CML experts, says about this subject: "How long should IM [Gleevec] be continued in the responding [CML] patient? There is preliminary evidence that the incidence of disease progression in responders diminishes with each successive year on IM. Moreover, there is no suggestion that the incidence of toxicity increases with duration of treatment. Anecdotal evidence suggests that most patients who stop taking IM lose within weeks or months the response they did achieve. These facts taken together suggest that the best advice for individual patients responding to IM is that the drug should be continued indefinitely, although whether this should be at full dose (400 mg daily) or at reduced dose is not yet established. A small number of patients in whom BCR-ABL transcripts have been undetectable for more than 1 or 2 years have stopped taking IM for various reasons. In the largest series published thus far, 6 of 12 patients showed evidence of relapse at the molecular level within 5 months of stopping IM, but the other 6 remained in "complete molecular remission" at a median follow-up of 15 months. This observation does raise the intriguing possibility that IM continued for long enough might eradicate residual leukemia in selected patients, perhaps particularly in those who have previously been treated with interferon- alfa. In vitro studies however suggest that "quiescent" leukemia stem cells are highly resistant to IM, and thus some at least are likely to survive long term even in patients who achieve a complete molecular remission, a conclusion supported by mathematic modeling of changes in BCR-ABL transcript numbers in responding patients. Whether this is clinically relevant remains to be seen. In summary, responding patients should continue IM indefinitely until such time as the results of prospective studies suggest otherwise." Negative PCRs for over 2 years is the criteria used for the study discussed above. Also, the patients who did not relapse in the study had taken Interferon-alfa before Gleevec. It is unknown whether that had anything to do with it. But this has caused a renewed interest in Interferon combined with Gleevec, and clinical trials are underway on this. Since Gleevec is not a cure, why have some remained disease free after stopping Gleevec? This is an interesting question, and no one knows why. There is debate about which level of stem cell causes CML. Some types of stem cells die after a number of years, and some live as long as the person does. If a person with CML can outlive the stem cell that originally caused the CML, then a cure could result, because all the leukemic daughter cells would eventually die and would not be replaced. While Gleevec does not seem to cause an actual cure, it could possibly allow a person to outlive the originating leukemic stem cell. If this theory is accurate (and no one knows), some who are PCRU could actually be cured and not know it unless they stop therapy. As I see it, there will be clinical trials that include stopping drug therapy, and these will provide information that will allow an informed decision to stop treatment. Until then, the recommended approach is to continue, and especially if a person is not PCR undetectable for at least 2 years. It is unusual that an Onc would suggest stopping Gleevec. But I will admit that it would be tempting to stop after being PCRU for many years and see what happens. But if someone is going to do it, continuous PCRs would be needed, probably monthly. But this information is one more reason to have hope that we might not need to stay on drug therapy for the rest of our lives, because a cure for CML -- in one form or another -- might be possible some day. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Bounced Around
Mel, Being bounced around from Gleevec to a Tasigna trial and then to Sprycel, and having Trisomy 8 is not the way you would like to have things go, so the distress is understandable. From your previous postings the good news has been your low blast count, which means you had not advanced to the accelerated stage. So there is reason to be grateful that you still seem to be in chronic phase. Also, from your previous postings your PCRs seem to show that you have done the best on Tasigna, except for the low platelet issue. If it were me, I would give Tasigna another try. Sometimes the platelet issue just takes some time to resolve itself, so you might be able to tolerate it better if you give it another chance. Tasigna dosage reductions and platelet infusions could also be options until your body gets used to it. You might also want to have a Secondary Resistance BCR-ABL Mutation test done to see if you have a resistance to CML drugs (note that this is a different test than the one that found your Trisomy 8 mutation). This is a relatively new test. This test can be done by Genzyme and MolecularMD. http://www.molecularmd.com/clinTestsBCRABLMutat.php It seems that you still have drug options available since you have responded reasonably well to Tasigna. Your BMB in a couple weeks will also provide more information, so I would ask your Onc about switching back to Tasigna now that it is available, having a Secondary Resistance BCR-ABL Mutation test done, and otherwise just hang in there to see if the BMB provides any other useful information. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: mutation testing
Genzyme Genetics is the only lab I know of that does this test. Here is their website: http://www.genzymegenetics.com/testmenu/tests/cancer/gene_p_testmenu_can_test_BCRABL.asp --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Fw: FW: Cancer Info Update from John's Hopkins
The plastic and dioxin part is an old Urban Legend that is false. The rest has grains of truth mixed with fabrications. http://urbanlegends.about.com/library/bl-microwave-dioxin2.htm This proves once again that the Internet is both a source of good and bad information. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: gleevec out of date> is it still good?
Probably. Most expiration dates are set by lawyers. It won't harm you, it just starts losing some effectiveness as it ages. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: my visit at Hopkins
Livia, It is difficult when so many things are coming together at the same time. In percentage terms, your PCR went from .01% to .04%. When the results are shown in that way, they do not look as bad. Shortly you will have the results of the PCR from the sample taken yesterday, and that will provide the information you need. Hopefully the trend will turn down again. Also, your red blood cells are doing better, which is good news, and the clinical trial is something to look forward to. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Vaccine Clinical Trial Experience
I felt fine -- no additional side effects beyond what Gleevec caused me. For the NIH trial there is one vaccine shot in each arm at the same time, since there are two different vaccines being used. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Vaccine Clinical Trial Experience
Livia brought up the issue of vaccine clinical trials in her recent posting. I was a participant in a clinical trial in early 2007 that involved research on a leukemia vaccine. This was a Phase I trial, which essentially checked to see if the substance was safe enough to try on a larger number of people in Phase II. So the data is very preliminary, since the trial was shorter than needed to demonstrate that this vaccine actually works. Phase II of this vaccine trial is now open at the National Institutes of Health in Maryland: http://clinicaltrial.gov/ct/show/NCT00488592;jsessionid=D972531406943C1B8C6A6512C99450EB?order=50 If interested, the clinical trial can only use people who have a HLA- A0201 WBC type match. This is found in persons of European descent, and generally northern region, but not exclusively. The term "vaccine" can be confusing when applied to leukemia, since a vaccine is normally used to prevent a disease from occurring, such as a flu vaccine. A leukemia vaccine would be given to someone who already has the disease, to control or possibly even eliminate the disease. If a vaccine is proven to be successful, it would presumably work on various types of leukemias, MDS, and possibly other malignancies. Generally, the vaccine trials are trying to stimulate the body's own immune system T-Cells to mount a battle against cells that have a larger than normal amount of a certain substance in them. Leukemic cells look close enough to normal to the body's immune system, so they are left alone. But leukemic cells are actually different than normal cells in some important ways. So a vaccine would teach the immune system to recognize that the leukemic cells are different, since they have greater amounts of certain substances in the cells (such as PR1, WT1, etc). The theory is that if you can teach the body's T-Cells to recognize the leukemic cells as abnormal, including the leukemic stem cells, the immune system would see them as a target and kill them. And since the leukemic stem cells are the source of all other leukemic cells in the body, killing them would be like cutting the head off the snake. But even if it did not kill the stem cells, a vaccine could be used to control the disease much as Gleevec and Sprycel kill the leukemic offspring cells, but not the stem cells that produce them. Remember that this is mostly theory and not yet proven as actually possible, although there is some evidence so far that the theory works to some degree on some people. There are various types of vaccine trials ongoing around the country. Most involve a peptide called PR1. Others include a peptide called WT1. Some use other potential vaccine candidates, such as a person's own leukemia cells that have been irradiated. The trial that I participated in included both PR1 and WT1 combined. You can read more about the details of this and other vaccines in the links below, but in short, PR1 and WT1 are present in normal cells, but they are present in much larger quantities in leukemic WBCs and especially in leukemic stem cells. So theoretically, the leukemic cells are different enough that the body's immune system could be taught to recognize those differences and respond. As previously discussed, leukemic cells look much like regular cells, so they are not attacked by the immune system's T-Cells. Each type of T-Cell is specific to certain invaders. A polio vaccine teaches the body to make T-Cells to fight anything that looks like a polio virus, and the effects last for a lifetime. That is the theory of a leukemia vaccine, except that it is given to someone who already has leukemia to control or eliminate it. So a leukemia vaccine could be a cure, not just a prevention. The best use of a vaccine would be to eliminate the minimal residual disease levels (the leukemic stem cells) that remain after drug therapy reduces the leukemia levels in the body. Dr Cortes of MD Anderson has said: "If we are able to stimulate an immune reaction against leukemia cells while there is minimal disease, it could offer us a curative strategy." Again, this is theory, not yet proven fact. So my experience in the clinical trial included getting a baseline PCR, BMB, and blood tests, followed the next week by several shots at the same time. This trial was a combination trial of PR1 and WT1 vaccines, so I (and 7 other participants with various leukemias or MDS) received shots including one PR1 vaccine, one WT1 vaccine, and a shot of Leukine to boost the immune system. Then we returned each week and provided blood samples for the next five weeks, and PCRs and other tests were done each week. Since I am PCR undetectable, they were not monitoring me for reduction of BCR-ABL, but rather looking to see if my immune system mounted a response by making T-Cells that would attack PR1 and WT1, which would assume the T-Cells would then attack leukemic cells. Most of the participants involved had a PR1 response, but fewer had a WT1 response. We learned af
[CMLHope] Re: Johns Hopkins Monday
Livia, The WBC count is within the normal range, and it can fluctuate because of allergies or low level bacterial infections. I would not be too concerned about that, and would wait to see what the PCR test results are. We wish you the best results. The low RBC count is a problem for many of us, so we are low on energy. For CML, our Oncologists cannot do much for us that Gleevec or Sprycel isn't already doing. So they tend to ignore us and focus on other more difficult problems in other patients. Your experience with that is fairly normal. It is good that we do not require constant care from our doctors. I was in a Phase I vaccine clinical trial, but only received one vaccine shot. I was already PCRU, and I continue to take Gleevec, so I do not know if it did anything for me. I would ask the clinical trial Oncologist if you will continue to take Gleevec. The doctor would probably be very interested to see what happens if you stop taking Gleevec to have a baby after the trial is over. If you do not have a choice between vaccine and Interferon, maybe you should investigate a clinical trial where you will be certain to get the vaccine. The NIH has such a clinical trial right now, which is the Phase II of the trial I participated in. You should call Dr Rezvani at NIH who is managing the trial (and Laura Musse, who you already know). http://clinicaltrials.gov/ct/show/NCT00433745?order=1 Good luck with your PCR and clinical trial decision. You can email me personally (use "reply to author") if you want more information about my clinical trial experiences. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: 3 new messages in 3 topics - digest
In mathematical terms, .1 equates to 1 in 100,000, and .01 is 1 in a million. But PCR values should be expressed as percentages, so if the PCR reads .0001%, that is 1 in a million. The theoretical limit of RT-PCR sensitivity is .0001% (1 in a million). So using RT- PCR, PCRU is less than .0001% (.99% or less). That is the theory, but sometimes a PCR can find a "needle in the haystack" at those low levels. Once again, the best use of PCR is for trends, not as isolated numbers. So if your latest PCR is approximately .001%, that is 1 in 100,000. It is also a 4 log reduction on the standardized scale, which assumes a 10.0% PCR value at diagnosis. If a more sensitive nested PCR is used, it can theoretically detect approximately 1 in 10 million cells. A CML PCR is not truly a total percentage of leukemic cells in the body, but rather a ratio of BCR-ABL DNA (RNA) to another type of DNA in your cells, which is different among various labs. It also is a complicated estimate, not a literal counting procedure like a BMB or FISH. But it is still a very good tool for monitoring low levels of disease for trends. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Calcium Levels
In simple terms, Osmolality refers to the level of concentration of something suspended in solution, such as calcium levels in the blood plasma. It is like putting sugar into iced tea; the sugar disappears as it is suspended in the liquid. http://www.nlm.nih.gov/medlineplus/ency/article/003463.htm Your levels are fine, and they would likely change from one day to the next. Also, the recommended normal ranges are not precise. I assume that you fasted for 12 hours before the test -- otherwise they would be on the high side. So you have plenty of calcium. If you are taking calcium supplements, you could cut back. If you are not drinking enough fluids, you could drink more. But overall, it is not a concern. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Rob -- Need to Block This Ankur Kothari Flim-Flam Guy
Rob, Second request -- need to block this guy. Are you there??? This website will not work without monitoring and taking action to enforce the rules. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: fatigue
Gleevec not only suppresses leukemic cell production, but it also mildly suppresses normal blood cell production. Many of us on Gleevec have blood counts at the low end of normal (or lower than normal). If your red blood cell (RBC) counts, HGB, and/or HCT are below mid-range normal, it will impact energy levels to some degree. Gleevec is a highly targeted drug, but not perfectly targeted. http://www.blackwell-synergy.com/doi/abs/10./j.1365-2362.2006.01645.x?cookieSet=1&journalCode=eci --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Rob -- Need to Block This Ankur Kothari Flim-Flam Guy
Rob, Please block this Ankur Kothari guy for violating posting rules. Thanks. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Possible other side effects
Some guys with CML taking Sprycel have reported that issue. Not sure about Gleevec. http://www.newcmldrug.com/bms_discuss/reply.asp?ID=4809&Reply=4809 --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Jeanie
Jerome is doing great. PCRU is only attained by fewer than 10% of CMLers. A 3 log reduction is used as the CML therapy goal, which is more realistic. And studies show nearly 100% survival rate if 3 log reduction is achieved. So Jerome has exceeded the goal. His anemia is something that many of us live with. Anisocytosis means the red blood cells have greater variation in size than normal. This is also shown by the CBC RDW count going higher. Poikilocytosis (oddly shaped red blood cells - RBCs) and occasional elliptocytes (oval shaped RBCs) and rare odd shaped poikilocytes are also seen in CML. Rouleaux formation is when RBCs clump together. These RBC issues are a matter of the "quality" of the RBCs, and go along with CML anemia. This is why just taking more iron or folic acid does not eliminate the anemia. These inefficient types of RBCs do not function as well, hence the anemia. Some data indicates these RBC quality issues tend to get better over time for many people. Hypocellular marrow (low number of cells in the marrow) goes with the anemia. If he is taking iron supplements, the increase in iron storage might show he is taking too much iron -- ask the doc about that. CML anemia does not automatically mean we need more iron. Too much iron can be counterproductive. The body stores the excess iron, which is not necessarily a good thing. Fibrosis (scarring) of the marrow is NOT Myelofibrosis (also called Idiopathic Myelofibrosis). No wonder it scared you. Mild fibrosis of the marrow can sometimes occur in CML, and is often reversible. Myelofibrosis is a different disease caused by a separate DNA mutation. --~--~-~--~~~---~--~~ You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope?hl=en -~--~~~~--~~--~--~---
[CMLHope] Re: RESULTS OF MY BMA SOME GOOD SOME BAD
Overall the report is not bad. Except for the platelet issue, the rest is not a big concern. "Moderately hypercellular marrow" (more cells in the marrow than normal people have) is fairly normal for CML types, even those who are doing very well. I am PCRU and my report says that sometimes. "No immunophenotypic evidence of a neoplastic lymphoid population" means no leukemic cells were found cytogenetic testing -- that is good, of course. (Note: this is not a PCR test). "Trilinear Maturation" is just a way to say whether all cell lines are maturing properly. Your report on that seems to say it is fine. Regarding the myeloid to erythroid (M:E) ratio, yours is just slightly below normal, meaning you have fewer WBC than RBC by ratio. But nothing to get overly concerned about. Here is some data on that issue: http://www.drugs.com/dict/m-e-ratio.html Megakaryocytic hyperplasia means you are making too many platelets. That is an issue worth watching, but not a disaster. It is excellent news that your blast count is fine. Sounds like your Onc is taking a cautious approach with increased dosage. You can take that one foot back out of the grave. It is not that bad. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] CML Testing Explained
There have been several requests for information about the various tests done on folks with CML. This is designed as a general overview to provide a basic layman's understanding of testing and CML. I will avoid the jargon and keep this somewhat short, so this will not cover everything in detail. For more details, Google the phrase and also ask your doctor/Oncologist. There are tests to diagnose CML, evaluate response to therapy, assess the levels of the remaining disease, and to check for specific problems. Among these are Complete Blood Count (CBC), Bone Marrow Biopsy (BMB), Bone Marrow Aspiration (BMA), Cytogenetics Testing, Fluorescence In Situ Hybridization (FISH) testing, Polymerase Chain Reaction (PCR) testing, and some miscellaneous other tests. When a person is suspected of having CML, testing is done to confirm the diagnosis. A Complete Blood Count (CBC) test will usually show a very high white blood cell (WBC) count, and may also show high platelets (PLT) and other abnormalities. But this does not confirm that a person has CML. The confirmation of CML is usually done by Cytogenetics Testing on cells taken during a Bone Marrow Biopsy (BMB) process. During a BMB, a core sample is taken from the hip bone, and marrow cells are collected that cling to that bone sample. While the hole is open in the hip bone, fluid from the hip marrow is also taken out by a syringe, and this second part is called a Bone Marrow Aspiration (BMA). The BMA aspirate or fluid is extracted through the hole created during the BMB. Cytogenetics Testing is done on the core sample and aspirate fluid. The marrow cells are viewed by a lab technician and/or doctor under a microscope, where the chromosomes are treated with a dye and observed, and the Philadelphia Chromosome (Ph chromosome), which is the indicator of CML, can be seen and a diagnosis made. The core sample is also checked for other abnormalities. So Cytogenetics Testing is done using a BMB core sample and aspirate viewed under a microscope. Cytogenetics Testing is also used to check for other chromosome mutations and abnormalities, so a BMB might be done again at six months post-diagnosis, and then every 12-18 months after that, or sooner if other tests show a suspected problem such as loss of response to drug therapy. When therapy reduces the levels of CML disease to where the Cytogenetics Testing can no longer detect any Ph chromosome cells among the approx 20 that are counted, that person has achieved a Complete Cytogenetic Response (CCR). After diagnosis, it is important to continually monitor response to therapy with regular Complete Blood Count tests. When these CBC tests show that the blood counts have returned to normal levels, and especially the WBC and platelet counts, the person has achieved a Complete Hematological Response (CHR). After that, the CBCs should still be continued, but the frequency is often reduced. The BMA fluid taken after a BMB core sample procedure can also be used to perform a FISH or PCR test. (FISH is fluorescence in situ hybridization and PCR is polymerase chain reaction). Or circulating (peripheral) blood can also be used nowadays with nearly equal confidence levels to perform a FISH or PCR. Both FISH and PCR show the levels of CML disease, and are used to monitor progress, or detect setbacks or loss of response to therapy. A FISH test checks approximately 200 - 500 cells, and counts the number of cells that have the Ph chromosome (technically it looks for the BCR-ABL gene in the cells). This is done by a machine which uses a dye process, isolates approx 200 - 500 cells, and counts the leukemic cells. The result is given as a percentage of leukemic cells to good cells, so the person can say that X% of their cells are leukemic. The limitation of FISH is that it can only count a small sample of cells, so if the level of disease is only a few percent, the FISH report will likely be zero (a zero FISH is also CCR, same as a zero Cytogenetics Test). So FISH is generally not used once the level of leukemia drops below approximately 5%. At that point PCR testing is used to monitor CML patients in this Minimal Residual Disease (MRD) status, since it is far more sensitive. A trend among Oncologists is to start doing PCRs early instead of FISH, since PCRs are more sensitive and can be used to track log reductions in disease levels, and FISH cannot track log reductions. There are two types of PCR tests. One is called a Qualitative PCR, which is a simple "yes/no" test that says it either detected BCR-ABL (leukemic cells) or did not detect them, but no number - this is generally only useful to help diagnose CML since it helps distinguish between CML and other types of leukemia. The other type of PCR, the Quantitative PCR, counts the number of BCR-ABL (Ph chromosome cells) and reports it, so this is the type of PCR that is useful to track treatment progress, especially in Minimal Residual Disease (MRD) status where the levels of Ph chromosome c
[CMLHope] Re: FISH tests GOOD SITE FOR EXPLANATION OF FISH
I believe you were diagnosed in early 2004. FISH tests are often used in combination with a BMB at diagnosis. After that, FISH can be used until it no longer registers positive. Then the PCR is used for monitoring since it is far more sensitive. Some Oncs have stopped using FISH at all and just use PCRs from the beginning, since the price has dropped for the PCR and it is a better indicator overall than FISH. If you are having a PCR done every 3 months, you can forget the FISH. The link you used for FISH in your posting was from 1999. That is ancient history in CML terms. I generally do not use any reference earlier than 2003, since so much has changed so quickly. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Update Gleevec Vacation
Previous postings on this issue are interesting to review for context: http://groups.google.com/group/CMLHope/browse_thread/thread/f5e7e20690a74dd4/6a8c3215350f751e?lnk=gst&q=Richard+H&rnum=1#6a8c3215350f751e --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Dizzy a lot
Gleevec can make some more likely to experience dizziness, but there are many other reasons. Low red blood cell/HGB/HCT counts are one, as Livia mentioned, since there is reduced oxygen in the blood, so the brain can become low on oxygen. But allergies are one of the most common causes. Throughout the year, allergies change from grass to weeds to molds. Just something to consider. It is also possible that Gleevec or low counts make allergy symptoms worse for some. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BMT's & Donors
My response should have said more clearly that the five alleles are in pairs, which is where the number 10 comes from. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: BMT's & Donors
For BMT matching, at least five different proteins or alleles, called Human Leukocyte Antigens (HLA), which reside on the surface of our cells, are used to match a donor. Allele matching is important to survival, since the body is continually invaded by foreign organisms that must be identified and killed. The body's defenses will kill anything that does not match the alleles in the rest of the body, including a non-matching stem cell transplant (this transplant rejection is called Graft Versus Host Disease -- GVHD). So the better the match, the higher the probability that the body will not kill the transplanted stem cells. If the match is perfect, there should theoretically not be a GVHD problem. Chances that a sibling will be a perfect match are about 30%, and non- sibling perfect matches are about 1 in 100,000. In the National Donor Registry in the U.S., each potential donor is tested for only 6 of the 10 alleles before being added to the donor base, since testing for all 10 is too expensive. When searching for a donor, they match 6 out of 10 first, then test for the remaining 4 as needed. That is where the match of 6 out of 10 has been determined for you. It could be more, and maybe even a perfect match, but additional testing would be required. In your case, that testing would only occur on those 24 people who match 6 out of 10 if you proceeded with a BMT request. One or more of them might be a 10 out of 10, or maybe none would match perfectly. Here are some links to more information: http://www.bmtinfonet.org/newsletters/issue53/perfectdonor.html http://www.marrow.org/PHYSICIAN/URD_Search_and_Tx/HLA_Matching_for_HTC/index.html --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: New development Trisomy 8 clonal transmutation?
Regarding mutations and progression to Accelerated Phase, the most recent thinking on the subject seems to lean toward saying that if the mutations are not accompanied by increased blasts (above 10%), then it is not Accelerated Phase. I believe that is what Dr Shah is saying. Here is the Wikipedia description of CML Accelerated Phase characteristics: "Accelerated Phase: Criteria for diagnosing transition into the accelerated phase are somewhat variable; the most widely used criteria are those put forward by investigators at M.D. Anderson Cancer Center,[5] by Sokal et al,[6] and the World Health Organization.[7] The WHO criteria are perhaps most widely used, and include: * 10-19% myeloblasts in the blood or bone marrow * >20% basophils in the blood or bone marrow * Platelet count <100,000, unrelated to therapy * Platelet count >1,000,000, unresponsive to therapy * Cytogenetic evolution with new abnormalities in addition to the Philadelphia chromosome * Increasing splenomegaly or white blood cell count, unresponsive to therapy The patient is considered to be in the accelerated phase if any of the above are present. The accelerated phase is significant because it signals that the disease is progressing and transformation to blast crisis is imminent." --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: low platelets
There is a "Sprycel Talk" website, which is very useful: http://www.newcmldrug.com/bms_discuss/default.asp The official Bristol Myers Squibb website is: https://www.sprycel.com/ Other helpful information can be found at: http://www.fda.gov/cder/drug/InfoSheets/patient/dasatinibPIS.htm http://www.drugs.com/sprycel.html http://emc.medicines.org.uk/emc/assets/c/html/displaydoc.asp?documentid=19219 You can also search our CML Hope website by using the "search this group" button in the upper right corner -- search for Sprycel, or just click here for the link: http://groups.google.com/group/CMLHope/search?group=CMLHope&q=sprycel&qt_g=Search+this+group We all hope Erik will do very well on Sprycel, as many others are getting good results with it. --Trey --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Need help with a decission
Livia, Here is the summary report on the Phase I clinical trial of this vaccine you are considering: http://meeting.jco.org/cgi/content/abstract/24/18_suppl/6509?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&fulltext=vaccine+cml&searchid=1&FIRSTINDEX=0&volume=24&issue=18_suppl&resourcetype=HWCIT K562/GM-CSF vaccination reduces tumor burden, including achieving molecular remissions, in chronic myeloid leukemia (CML) patients (PTS) with residual disease on imatinib mesylate (IM) B. Smith, Y. L. Kasamon, C. B. Miller, C. Chia, C. Gocke, J. Kowalski, I. Tartakovsky, B. Biedrzycki, R. J. Jones, K. Hege and H. I. Levitsky Johns Hopkins University, Baltimore, MD; Cell Genesys, Inc., South San Francisco, CA Background: Despite high rates of clinical responses to IM, molecular complete responses are rare. The curative potential of allo transplantation and donor lymphocyte infusions underscores CML's responsiveness to T cell mediated immunity. K562/GM-CSF is a tumor vaccine derived from a CML cell line that expresses several defined CML associated antigens and has been genetically engineered to produce GM-CSF. A pilot vaccination strategy was developed to determine if K562/GM-CSF immunotherapy in combination with IM could enhance T cell reactivity and clinical responses in pts having persistent, measurable disease despite 1 or more years on IM. Methods: Eligibility required pts to have achieved a major cytogenetic response (<35% Ph+ cells) while on a stable dose of IM. Disease burden was measured serially over 12 wks prior to vaccines. 4 vaccines were administered in 3 wk intervals, each consisting of 1 x 108 irradiated K562/GM-CSF cells distributed over 10 sites, with or without topical 5% Aldara (a Toll- like receptor 7 agonist) used as a vaccine adjuvant. Disease burden was measured at 6 wk intervals for 9 mos from the first vaccine and specimens were banked for measurement of immune responses. Results: The trial enrolled 19 pts, all have completed the planned 4 vaccinations and 14 pts have completed all planned disease burden measurements. The median age is 52 (range 28-76) yrs with a median time from dx to enrollment of 57 (range 16-111) mos. Pts were on IM for a median of 37 (13-53) mos prior. 4 of 19 pts had FISH pos as their best previous response (BPR) with 2 becoming FISH neg post- vaccine (1 became PCR neg and 1 achieved a >1 log reduction in disease burden by PCR). Of the 15 pts whose BPR was FISH neg/PCR pos, 4 are now PCR neg post vaccine, 4 experienced a >1 log and 1 had 0.5-0.99 log reduction by PCR. Mean PCR levels for the 19 pts declined btwn pre- and post-vaccine measures (p=0.01). 3 of 5 pts achieving PCR neg remain so beyond 6 months. Only 1 pt progressed having entered the study with a heavy disease burden (30% FISH pos). Conclusions: K562/GM- CSF vaccine appears to improve responses in pts on IM, including achieving complete molecular remissions, despite long durations of previous IM therapy. END QUOTE The vaccine in the clinical trial you are considering is made by taking the patient's own leukemic cells, mixing them with GM-CSF (Leukine -- which boosts WBC production), and then the mixture is irradiated to geneticly alter the cells. The goal is to try to teach the patient's T-cells to recognize the altered leukemic cells as something that should be attacked and eliminated, and also teach those same T-cells to attack live leukemic cells. The Phase I report above shows that it works to some degree on some people, but not on everyone. I participated in a different type of vaccine clinical trial earlier this year and will post some information about it in the near future. But as far as whether you should participate and why you would want to, you need to look into several issues. First, your Onc is also involved in the clinical trial, so he needs to get 54 people to sign up for it, which is harder than you might think. He may not have any other reason for suggesting that you participate but to fill his quota, so you should ask him that directly. If your RT-PCRs are negative but the lab has also been doing nested Q-PCRs which are more sensitive and show positive, then you have at least a 4 or 5 log reduction in BCR-ABL. So controlling the disease is not much of an issue for you. So the reasons to participate in the trial could be: 1) to help expand the science of CML vaccines, 2) to see if you are able to further reduce your BCR-ABL levels, and have the residual effects carry you during pregnancy, 3) to hope the vaccine might eliminate some or all of your leukemic stem cells and progenitor cells that Gleevec cannot eliminate, and become cured (this is not proven, and is highly questionable). There is another item, which is that you may not be accepted into the trial since your BCR-ABL levels are so low. The clinical trials prefer to have people with only a 2 log reduction, so they can track the progress in BCR-ABL reduction. If you go from being barely detectable to undetectable, have
[CMLHope] Re: Nilotinib
Novartis has several patents on Gleevec (Imatinib), but generally the main patent expires in 2015 (it was extended from the original expiration date of 2013). Bristol Myers Squibb has five patents on Sprycel (Dasatinib). The main patents expire in April 2020. Novartis has filed a patent for Tasigna (Nilotinib) which has not yet been approved. It will likely be into 2020 as well. These drugs are granted "orphan drug" status, meaning they have a limited population that benefits. So the patents are favorable to those companies that develop new drugs to fill these "orphan drug" needs. That is because the high development costs might make them unprofitable, so companies might not develop them without the long patent terms. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Nilotinib
Actually, just as Gleevec is the marketing name used by Novartis, and also still has the generic technical name Imatinib, Tasigna is the marketing name, and Nolotinib will continue to be the generic technical name. Same for Sprycel and Dasatinib. When the patents expire for each (a long time), they would receive other marketing names by the new companies selling them, but the techincal name lives on. Another example is antihistimine sold under various brand names such as Benadryl, Claritan, Tavist, Ephedra, etc., but it is always still antihistimine. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
