[CMLHope] Re: Can someone help with the terminology?
Hello Steve, Sorry your wife Vanessa has become a member of our club, but on the other hand there are quite a few new drugs out there to help us all. It was interesting that you mentioned that your wife was first put on Interferon, and then switched to Gleevec. The exciting thing is that IFN is the only drug available at this time that could potentially stimulate an immune response, however, it is usually not well tolerated. Interferon was the only drug available before Gleevec and it was administered in very high toxic doses which made most patients quite sick. However, there is new work going on with low dose interferon and some thought of cycling Interferon (IFN) with Gleevec. >From what we know at this stage of the game, Gleevec does not "cure" CML, that means we will have to take it for the rest of our lives - if we are lucky. The down side is that some people do develop side effects either initially, or after some time on the drug. Some of the side effects are easier to deal with then others. I would guess in most cases the side effects are probably worst than we allow ourselves to acknowledge only because we are able to convince ourselves that it is better than the alternative (i.e. being really sick on other drugs, going through a transplant, etc.) . So, when it comes to side effects we have to take many things into consideration, other than just the physical effects. For so many people, Gleevec has "bought" us important time. Since Gleevec was launched there is now at least one new drug on the market, Sprycel - from Bristol Myers Squibb, that provides patients in the US with an alternative choice. But there are at least 3 other drugs in clinical trial - AMN107- Tasingna (Novartis), SKI 606 (Wyeth) and another new drug, I think from Chemgenex for MDS and CML - Decitabine. I am not a big fan of high dose Gleevec personally, especially now with other options for patients to try. The reason being is that the latest studies from the top hematology conferences show that the higher doses really do not offer a statistically significant benefit. We have heard that many patients notice a decrease in their quality of life on the higher doses. So, my feeling is that if there is some way to feel less miserable without compromising your health too much (everything is a trade off, it just depends what you want to trade) then go on the standard dose of 400mg and watch very closely what happens. I am just guessing that after a few weeks of IFN and your wifes WBC's have declined dramatically, than she seems to be a good responder. So the higher dose is kind of like using an entire can of raid on one small fly - a bit of overkill. To much drugs in your system effects your other organs (i.e. liver, kidneys, etc), so since we are going to be on one drug or another for some time, why compromise ourselves so early in the game when it might not be necessary? It isso important to approach this strategically, but it is so hard to do in the beginning because you are so new to this. You do not even know what you do not know at this point. Additionally, we will all be feeding you information as your doctor will and, well I remember thinking back to close to 6 years ago when I was dxed, it can be a bit overwhelming. For the record, here is what I chose to do (bear in mind, I have over 16 years in the health care field in marketing and sales, so I had some knowledge on how the system works - and don't kid yourself, it is a system, regardless of where you are). I chose to go on IFN first even though Gleevec was available and I could have opted for that. I went with IFN specifically for its ability to generate an immune response, kind of like teaching my body to FISH (more about this later). This is a very personal decision, and for me it just felt like a very proactive thing to do. Of course, I made this decision with much more confidence as there was Gleevec to "fall back on" if IFN didn't work for me. But IFN did, and I enjoyed a wonderful quality of life (unlike many of my fellow CMLers) on very low dose IFN. I even achieved a PCRU (Polymerase chain reaction undetectable). However, I was "smitten" by the wave of Gleevec and switched over. Although I never admitted this publicly, my quality of life was horrible and greatly deteriorated on Gleevec. Last summer, we saw classic signs of potential kidney failure. My Hemoglobin was always "rock bottom" and although I am a very active individual, hiking, SCUBA diving, kayaking (a recent new thing) I felt like I was doing this with about 100 pounds of lead strapped to my body. Peripheral edema was the worst, regardless of how much I dieted or what kind of diuretics I took, I could not shed the extrat 15 pounds of "water weigjht" further compounding my kdiney problems. It has been a bit of a nightmare for me. This is the first time I am talking about this publicly. So, If I was newly diagnosed, what would I do? I would like to first say something
[CMLHope] Can someone help with the terminology?
Hi wondered if anyone can help. I'm struggling with a few of teh acronyms and some of the terminology. What does PCRU refer to explicitly? I assume it relates to full remission but if someone could clarify , that would be great. In addition, having read a number of the topics I gather that the status of the CML is measured in %. Can you clarify what the % explicitly measures. Excuse the ignorance, but my wife and I are new to this. Cheers Steve --~--~-~--~~~---~--~~ [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 I'm New and have a couple of questions
Many of us who have CML do not have a normal blood count. Gleevec is an outside regulator that cannot duplicate the internal regulators perfectly, but it often gets close enough. You might call our blood count status "CML normal", because it is normal enough for a healthy life, but would look odd otherwise. You can expect continual fluctuations in blood counts over many months or longer. But the first rule is don't panic over the temporary lows and highs. It is better to watch longer term trends, and only take action when absolutely necessary. Reference Mike Burwen's advice above about CML experts, because most Oncologists deal so much with other cancers that they do not understand CML very well. Some will panic and pull a patient off Gleevec prematurely. That is necessary sometimes, but often waiting for the next couple blood counts will show improvement. There are also WBC boosters available if the counts go too low and stay there. For instance, my Onc said she would not worry unless my WBC count stayed well below 2,000. Staying on Gleevec is very important, if at all possible. It is also a good idea to keep your own chart of blood counts to show trends, which is helpful when talking with the Onc. While the WBC is low, one should avoid cuts and wash any skin breaks well. Keep hands washed and avoid sick people (good luck with that). But generally, even with CML, the body can usually respond to illness by making more good WBC when needed. Vanessa sounds like she is having a relatively normal response to 600mg. Gleevec is a powerful drug, and that power is not always perfectly directed. Watch the long term trends and don't panic. She can always reduce to 400mg or get WBC booster shots if counts do not stabilize. --Trey dx Oct 2005 --~--~-~--~~~---~--~~ [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 I'm New and have a couple of questions
Steve, I don't have much more to add than what everyone else has said. I was diagnosed in June/06. I was put on Allopurinol for two weeks, and started 400 mg of Gleevec a few days after the Allopurinol. In the beginning I was a little more tired than usual, and experienced some heartburn which is also a side effect of both medications. But I have been blessed to have no other side effects. After one month of being on Gleevec both my WBC and platelets have dropped significantly. I agree with the others that you need to have an Oncologist that is very experienced in what your wife has. My Dr. has been involved in alot of Research and he is so easy to communicate with. Best of luck to your wife. Having a supportive husband is a good thing. I am blessed on that part too. Caron --~--~-~--~~~---~--~~ [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 I'm New and have a couple of questions
Looks like you have gotten losts of responses already. I started out on 400mg/daily or Gleevec. After 6 months, the dosage was up'd to 600mg/daily. My oncologist said that 600mg was the "optimal" dosage. I wish you and your wife great success with Gleevec. It does have a lot of side effects, but it has been a true "miracle" for me and many others with CML. --~--~-~--~~~---~--~~ [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 I'm New and have a couple of questions
Sorry to hear about Vanessa. I was diagnosed in April of 04 and put on 400mg of gleevec and have been in remission for almost two years now. My blood counts go up and down but now stay within safe guidelines. As has been mentioned Gleevec can cause some side effects, but some people have them worst then others. In my experience I had allot of swelling around the eyes, but that has nearly gone away. Vanessa may go through some nausea, and bone pain, and fatigue, or she may not, it seems the drug effects people differently. The one great thing about Gleevec is it works and can help her have a very long life. My doctor has pretty much ruled out me having to get a bone marrow transplant as long as the Gleevec maintains my remission. I think the main reason they placed her on a higher dosage was the level her WBC was when they found the disease. It is awesome to see you are being so supportive, keep it up because that is what she will need. I know my doctor stressed that aspect of "living" with CML. She will need support, because with CML many of us do not look sick on the outside, and many people do not really understand what having a "chronic" disease means. I mentioned Gleevec allowing her to live a long life, a good example is what my doctor explained to my fiance when she went on her first doctor visit with me. He told her of a patient he has that was diagnosed in his early twenties. This was before Gleevec was available so he told that patient he would most likely live 4 to six years tops. Well that patient was treated with what was available, and when Gleevec came out, my doctor put him on it. That same patient is now my age, which is 39, and is showing no signs of going anywhere anytime soon. To make a long story short. Gleevec has given him, myself, and many others a very good chance of living a long relatively normal life. The life expectancy went from 4 to 6 years to 15 to 20 years. My doctor also explained with advances coming down the pike that the outlook for people with CML is very bright. It may have been mentioned but I cannot stress enough the importance of having a doctor that is knowledgeable about CML, and shows compassion. I fired my first doctor, basically because he was clueless about CML, and could not even tell me what to expect while taking Gleevec. So if her doctor is treating her well as a person and is understanding, keep them. If not look else where. The main thing is to keep doing what your doing...being supportive, and giving her your love. I know it can be scary, but hang in there, I believe you will have her around for a very long time. Take care, Terry On 7/9/06, mburwen <[EMAIL PROTECTED]> wrote: It is common for some blood counts (especially WBC and Platelets) tooscillate a bit during the first few months on Gleevec. I assume your wife is being tested every month at this stage, so you will be able totrack the blood counts. The initial dose of Gleevec, whether 400,600, or 800, is Dr.s' choice. I'd say it is more usual to start on 400 because, the Dr.s sometimes want to see how well you handle the drug,but there is a lot of evidence to suggest higher doses are moreeffective. You really aren't going to know for sure for severalmonths. Since you are new here, I'll repeat my oft-repeated mantra again. Thatis, make sure that you have a Dr. that is a CML expert on your medicalteam.Mike Burwen --~--~-~--~~~---~--~~ [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: To Dane
Thanks all for the encouraging words! I just hope that the good news holds for the next few tests! Regards and prayers. Dane --~--~-~--~~~---~--~~ [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 Clinical Trials
I think if I needed to be in a clinical drug trial I would much rather go with the investigational new drug rather than the higher dose study. The data points to the fact that there really isn't much of a difference in benefit by reaching a 3 log reduction sooner and that even slow responders over time catch up on just the 400mg. From what I have read, the side effects make the drug almost unbearable. I am so sorry some patients will jump on the higher dose study. I feel their suffering... Cheers, Cheryl-Anne --~--~-~--~~~---~--~~ [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: To Dane
Hey Dane, These are awesome pictures - the entire family looks great. Love and all good things, Cheryl-Anne --~--~-~--~~~---~--~~ [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 -~--~~~~--~~--~--~---
