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 aobut yout wifes case. You said she was dxed with WBS in 250,000. I was dxed in the 145,000 range (November 2000). I think starting on the IFN was a pretty good and interesting decision. Let me know how she tolerated it, and what dose she was on. Who is her Doctor and where is she being treated? Maybe the 600 MG of IM is part of the strategy to further attack the BCR ABL oncoprotein, and it seems that the IFN gave her a good head start. From what I have read, the 600mg is much better tolerated than the 800mg. So, my fingers are crossed that this will work out for your wife. She needs to know the results of her BMB/BMA and her baseline FISH and PCR. It is very likely that her FISH (Flourescent in situ hybridization - measures the percentage of philadelphia chromosomes - translocation between chromosomes 9 and 22, which forms the new philadelphia chromosome) is probably 100%. Most of us are 100% at DX (Diagnosis). the PCR (polymerase chain reaction) measures the oncoprotein - BCR ABL. BCR stands for Break point cluster region, and ABL stands for abelson (named after the scientist who discovered it). These are the "regions" on the chromosomes. Gleevec works to inhibit this oncoprotein by binding to the site on the oncoprotein where ATP would normally bind. ATP is like an "energy pack" that keeps the cell "turned on" and disrupts it from going through the normal process of cell death (Apoptosis), which is why the philadelphia chromosomes proliferate out of control as throws the rest of the cells in the marrow out of whack. Consequently, other componenets in our marrow start to overproduce (actually they do not die off as in anormal cycle). Our bone marrow becomes overun with too many cells - too much of a good thing is never good, and we get into trouble. In the beginning of treatment for CML we are looking to regain hematological remission. That means that our WBC's, Basophiles, Eosiniophiles, platelets, Hgb etc all return back to their normal level. Go to www.cmlsociety.org in the discussion area and look at the information from the CBMTG meeting which will give you the timelines when certain milestones should be reached according to the Canadian consensus. It is pretty much the agreed timeline for the rest of the world. After hematological response is achieve the next step is achieving "Zero" FISH, which essentially means no more philadelphia chromosome. This shows us that Gleevec (or IM as we like to refer to it) is working it's magic. The next step, or something that can actually be measured simultaneously is the reduction of the BCR ABL oncoprotein - the PCR test. It is ideal to achieve at least a 3 log reduction in 12 to 18 months. An therein lies the reason that some people go for the higher doses. There was some thought that the faster you achieve a 3 log reduction the "safer" it is for you. However, data from the recent ASCO (American Society of Clinical Oncolog) conference shows that even over time, slower responders on 400 mg eventually get to a 3 log reduction. Very rarely, patients do not respond and need higher doses or switch to one of the newer drugs altogether. Some patienst, roughly 10% achieve PCRU, which is usually greater than a 4 log reduction. Most CML experts will tell you that at a 3 log reduction or better, the chances of living a long life with this disease, improves significantly. All this to say that it was good that your wife got to try IFN first and switch to IM afterwards - kudos to your wifes doctor for trying this approach. From what I know, she should tolerate the 600mg fairly well. I would say to you that I noticed an improved quality of life on IM (albeit it slightly- but any improvement helped) when I adopted a low carb diet, I have no clue why that is, but it does seem to help with the edema. As much as your wife might feel tired, you must encourage her to do some form of daily exercise, it is essential, even if it is a few minutes of rapid walking gradually building up to longer durations. If I do not exercise, I feel lousy. The least you exercise, the least you want to exercise, the more miserable you feel, it is a vicious circle. How good of you to be so supportive of your wife. There is so much to learn and think about. I was 43 at the time I was dxed close to 6 years ago. Just this past june I was quite happy to watch my daughter (who's name is Vanessa by the way) graduate from University. When you consider that at the time of my dx the usual prognosis was 3 to 5 years, I could have missed this milestone in my daughters life. I certainly do not want to jinx myself, but I continue to contribute into my pension plan - just in case... Sorry this was so long, but I hope some of it helped. The bottom line is that you need to learn as much as you can so that you can be proactively engaged in the management of the disease and understand that certain strategy can be developed for long term management - which we hope isn't too long term, as many brilliant scientist are hard at work looking for a cure for this horrible disease. We can only give you suggestions and tell you what worked for us. As much as we are similar, we are all quite different and unique actually. The best thing to do is to stay informed of all the options (thankfully we have so many) and try the combination that works best for the patient. Cheers and keep us posted. 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 -~----------~----~----~----~------~----~------~--~---
