[CMLHope] Re: Mutation analysis - several questions

2009-08-08 Thread Trey
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 th

[CMLHope] Re: Long-term PCRU

2009-08-08 Thread Trey
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

[CMLHope] Re: CML and Green Tea

2009-07-09 Thread Trey
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 s

[CMLHope] Re: My counts have been rising and now have to take hydroxyurea along with my Tasiga

2009-06-22 Thread Trey
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/publi

[CMLHope] Re: Son has CML

2009-02-26 Thread Trey
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

[CMLHope] Re: Osteoperosis

2009-02-08 Thread Trey
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

[CMLHope] Re: Chat Remider tonight 9:00 PM Eastern

2009-01-28 Thread Trey
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 "CMLHo

[CMLHope] Re: Blood in Urine

2009-01-24 Thread Trey
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

[CMLHope] Re: Medical Articles 12/23

2008-12-24 Thread Trey
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 p

[CMLHope] Re: Ariad AP24534 Trial in CML/Leukemia

2008-12-14 Thread Trey
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.

[CMLHope] Re: another question re rash

2008-12-01 Thread Trey
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 diffe

[CMLHope] Re: Gleevec Holiday?

2008-11-28 Thread Trey
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

[CMLHope] Re: Monnosomy 7

2008-11-20 Thread Trey
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-

[CMLHope] Re: Medicare Part D

2008-11-18 Thread Trey
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 -

[CMLHope] Large Donation Funding OHSU Research

2008-11-04 Thread Trey
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.

[CMLHope] Re: side effect?

2008-11-04 Thread Trey
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

[CMLHope] Re: Fwd: 13 yr old son diagnosed in August

2008-11-04 Thread Trey
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 Gle

[CMLHope] Re: Fwd: 13 yr old son diagnosed in August

2008-11-03 Thread Trey
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

[CMLHope] Re: PCR baseline

2008-10-30 Thread Trey
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:/

[CMLHope] Re: debilitating fatigue, but good therapeutic response, with gleevec

2008-10-30 Thread Trey
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. Othe

[CMLHope] Re: How meaningful is this PCR increace

2008-10-27 Thread Trey
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

[CMLHope] Re: Medical Articles 10/10

2008-10-14 Thread Trey
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 -

[CMLHope] Re: My son Status - Bad news

2008-10-14 Thread Trey
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] Re: Gleevec or Dasatinib

2008-09-29 Thread Trey
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 wit

[CMLHope] Re: Help for doing BCR ABL Mutation

2008-09-29 Thread Trey
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

[CMLHope] Re: Gleevec or Dasatinib

2008-09-26 Thread Trey
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-dn

[CMLHope] Re: Procrit

2008-09-23 Thread Trey
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

[CMLHope] Re: what's the importance of BCR ABL Mutation Analysis?

2008-09-18 Thread Trey
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 b

[CMLHope] Re: Ups & Downs & What Next?

2008-09-05 Thread Trey
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 workin

[CMLHope] Re: ALLOPURINOL ? Sodium polystyrene sulfonate (e.g.Kayexalate)

2008-09-02 Thread Trey
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 (sal

[CMLHope] Re: ALLOPURINOL ?

2008-09-02 Thread Trey
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] Re: Procrit and myeloid Leukemia

2008-08-29 Thread Trey
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

[CMLHope] Re: hi potassium in blood?

2008-08-26 Thread Trey
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 h

[CMLHope] Re: In the beginning

2008-08-22 Thread Trey
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, b

[CMLHope] Re: What Should I DO?

2008-08-17 Thread Trey
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%2

[CMLHope] Re: can someone comment on my cbc report thanks

2008-08-11 Thread Trey
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.

[CMLHope] Re: Test Results

2008-08-04 Thread Trey
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 ti

[CMLHope] Re: New Drug

2008-07-16 Thread Trey
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

[CMLHope] Re: Thanks for your responses

2008-07-13 Thread Trey
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%

[CMLHope] Re: back pain

2008-06-21 Thread Trey
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] Re: Relapse after BMT

2008-04-20 Thread Trey
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 si

[CMLHope] Re: grapefruit

2008-04-09 Thread Trey
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 prod

[CMLHope] Re: combination of interferon and glivec

2008-04-09 Thread Trey
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-a

[CMLHope] Re: Hand cramping

2008-04-06 Thread Trey
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 tech

[CMLHope] Re: Rachel and what to do....again.

2008-04-03 Thread Trey
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 complete

[CMLHope] Re: platelets are rising again Giant Platelets?

2008-03-31 Thread Trey
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

[CMLHope] Re: just got my cbc report back it is the worst I've ever had

2008-03-30 Thread Trey
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) o

[CMLHope] Re: generic imatinib

2008-03-27 Thread Trey
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 mo

[CMLHope] Re: BMB question

2008-03-24 Thread Trey
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 sup

[CMLHope] Re: how necessary are bone marrow biopsies?

2008-03-13 Thread Trey
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 B

[CMLHope] Re: Sprycel and Gastro Problems

2008-03-10 Thread Trey
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

[CMLHope] Re: how necessary are bone marrow biopsies?

2008-03-10 Thread Trey
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 progr

[CMLHope] Re: CML Patients SPEAK OUT Survey

2008-03-10 Thread Trey
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

[CMLHope] Re: BMB results after 4% positive FISH

2008-02-22 Thread Trey
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

[CMLHope] Re: Somewhat Newly Diagnosed

2008-02-22 Thread Trey
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

[CMLHope] Re: G250E Mutation and Goodbye Gleevec!

2008-02-22 Thread Trey
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 articl

[CMLHope] Re: 5 new messages in 5 topics - digest

2008-02-14 Thread Trey
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

[CMLHope] Re: What's used for CLL?

2008-02-12 Thread Trey
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 cal

[CMLHope] Re: Interferon and chemo

2008-02-10 Thread Trey
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

[CMLHope] Re: New CML Video + Other Resources

2008-02-09 Thread Trey
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 --~--~-~--~~~---~--~~ [CM

[CMLHope] New CML Video + Other Resources

2008-02-07 Thread Trey
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 th

[CMLHope] Re: RESULTS OF FLOW CYTOMETRY REPORT please explain?

2008-02-05 Thread Trey
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 positiv

[CMLHope] Re: Doing QPCR

2008-02-04 Thread Trey
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 M

[CMLHope] Re: positive FISH test

2008-02-01 Thread Trey
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

[CMLHope] Re: Transplant

2008-01-13 Thread Trey
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-8

[CMLHope] Re: New Year News/ Jonathan

2008-01-08 Thread Trey
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 -

[CMLHope] Re: Need your advice, 11 years old boy with CML

2008-01-05 Thread Trey
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 CM

[CMLHope] Re: Thrombocytopenia

2008-01-02 Thread Trey
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 wo

[CMLHope] Re: CML SPECIALISTS

2007-12-30 Thread Trey
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 --

[CMLHope] Re: combination of interferon and glivec

2007-12-28 Thread Trey
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 wa

[CMLHope] Re: broken rib

2007-12-26 Thread Trey
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] Re: Stopping Gleevec

2007-12-16 Thread Trey
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

[CMLHope] Re: Stopping Gleevec

2007-12-14 Thread Trey
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

[CMLHope] Re: Bounced Around

2007-12-13 Thread Trey
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

[CMLHope] Re: mutation testing

2007-12-05 Thread Trey
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

[CMLHope] Re: Fw: FW: Cancer Info Update from John's Hopkins

2007-12-04 Thread Trey
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] Re: gleevec out of date> is it still good?

2007-11-29 Thread Trey
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

[CMLHope] Re: my visit at Hopkins

2007-11-27 Thread Trey
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 pro

[CMLHope] Re: Vaccine Clinical Trial Experience

2007-11-25 Thread Trey
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.c

[CMLHope] Vaccine Clinical Trial Experience

2007-11-24 Thread Trey
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

[CMLHope] Re: Johns Hopkins Monday

2007-11-22 Thread Trey
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

[CMLHope] Re: 3 new messages in 3 topics - digest

2007-11-18 Thread Trey
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 tha

[CMLHope] Re: Calcium Levels

2007-11-01 Thread Trey
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.h

[CMLHope] Re: Rob -- Need to Block This Ankur Kothari Flim-Flam Guy

2007-10-27 Thread Trey
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 --

[CMLHope] Re: fatigue

2007-10-23 Thread Trey
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 impa

[CMLHope] Rob -- Need to Block This Ankur Kothari Flim-Flam Guy

2007-10-23 Thread Trey
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 Googl

[CMLHope] Re: Possible other side effects

2007-10-18 Thread Trey
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 -

[CMLHope] Re: Jeanie

2007-10-15 Thread Trey
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 o

[CMLHope] Re: RESULTS OF MY BMA SOME GOOD SOME BAD

2007-10-13 Thread Trey
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

[CMLHope] CML Testing Explained

2007-09-21 Thread Trey
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. F

[CMLHope] Re: FISH tests GOOD SITE FOR EXPLANATION OF FISH

2007-09-19 Thread Trey
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 jus

[CMLHope] Re: Update Gleevec Vacation

2007-08-31 Thread Trey
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 htt

[CMLHope] Re: Dizzy a lot

2007-08-23 Thread Trey
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. Throug

[CMLHope] Re: BMT's & Donors

2007-08-18 Thread Trey
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 messag

[CMLHope] Re: BMT's & Donors

2007-08-17 Thread Trey
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 a

[CMLHope] Re: New development Trisomy 8 clonal transmutation?

2007-08-16 Thread Trey
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 Wikiped

[CMLHope] Re: low platelets

2007-07-01 Thread Trey
ups.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

[CMLHope] Re: Need help with a decission

2007-06-25 Thread Trey
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

[CMLHope] Re: Nilotinib

2007-06-08 Thread Trey
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 Tas

[CMLHope] Re: Nilotinib

2007-06-05 Thread Trey
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), t

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