So sad today. I have been dx with CML for 2 years and and 9 nightmarish months (had some major issues with severely low counts along the way). Not to say I have not had some wonderful times and some happiness during, but having a disease that I don't even feel right now, knowing all the time it can kill me, really sucks much of the enjoyment out of life. Anyway, my PCR came back higher. It is considered within range for stable, but it is so depressing. Again, I was so hoping to be MMR.
Despite hearing that that CCR is still good, most every article I read mentions that reaching MMR or better yet, PCRU quickly, (or on time, and I have not according to Trey's calculations), have a very little chance of progressing. I am on a full therapeutic dose of Sprycel (100mg) and have been for 2 years. My blood counts are still very low (well, just on the border of needing shots for the red and white blood cells). I can only think that since my blood quality has been so poor for so long, it is a bad sign. Moreover, I usually come up with "toxic granulation" in my blood counts. I have heard on this site, it could be trouble, but since it has been so common for me over the years, and I have yet to pop off from some infection, I am probably OK. The only thing that I know is that it is common in people who suffer from leukemia. So, it seems to be that leukemia is still very rampant in my body.
I started taking curcumin for a year now (and Omega 3). I upped my curcumin dose 3 months ago. And I have not noticed any drop in any of my counts (PCR included--it actually has crept up). Ironically, my PLT have increased to 70,000. This is the highest they have ever been on a TKI. So, it appears curcumin and Omega 3 are not making my counts lower.
Nevertheless, I have not really seen much change in my PCR taking Sprycel and curcumin (and Omega 3). So, I will stop the curcumin and see how the next PCR in Oct. comes out. If it stays the same, I could only guess the curcumin is not making the Sprycel work better for me. However, I have this crazy idea in my head that the curcumin is helping to reduce inflammation, which cancer patients have a ton of. I would hate to stop just for that reason alone. But unless I do, I will have no idea if curcumin is helping to keep my PCR at my current level or not.
I have in mind that if I were MMR (or the heaven-sent PCRU), I could reduce my dose of Sprycel to get my counts up. I cannot say that I notice anything different about my life with my current low counts, but I just would feel safer if they were normal. So much for that.
Just having a hard time with this. I remember someone writing about a woman they know of who has been CCR for 14 years. I guess that is fine if there is research to support that just being CCR forever = a very miniscule chance of progression---ever. But that is not supported. MMR and PCRU appears to be (or best liked). Among other things (i.e. normal blood counts). I feel like a failure and that this disease is silently and slowly beating me.
Anyway, seriously thinking about asking to see Dr. Tapez (he is closest). After crying to my husband for half an hour on the phone, he suggested we take a long weekend to go see him, if only to make me feel better about my current CML status. Perhaps when Ponatinib is finally approved, it will work better. Hope my leukemic cells can be staved off that long.
I am so scared I will not survive a SCT. And I don't want to continue life with any more misery that one would surely bring and with a small chance of living longer. It would be a very difficult choice if the time comes. Would I want to take a chance that it may extend my life? Or would I have lived longer just letting the CML take its course with palliative care (it is considered a chronic cancer...). It will be a tough decision. But I hope it never comes to that for me or any of us.
To end, is it time to see a specialist? I want to be proactive. I think if my blood counts were more normal, I would not be as distressed. My onc stays it is still because of the disease. It has been almost 3 years. And my PCR has been the same for the last 9 months. I cannot say how disappointed I am. It would have been great if Gleevec worked for me (cost-wise too since it will become generic first). I cannot help but get so depressed that on 100mg of the strongest approved TKI on the market, and at 100mg, I am still only CCR after 2 years. But yes, it could be worse. My husband tells me, "Honey, no one lives forever." I know he means well. But you just don't say that to someone suffering with a deadly illness. It is like a knife every time. (I think it makes him feel better and he is trying to be Zen about it. but being Zen only really seems to work for those in good health and have had little personal tragedy in life (not to mention---have reached a considerable age--aren't most of the masters really old?). I am not sure he really understands what it is to live a Zen lifestyle. I think the biggest thing is compassion. Well, anyway, I digress... At this point, I would like to make it to 50. But I would be so incredibly grateful to die of old age.
Thanks everyone for giving me the opportunity to vent.
P.S. My first onc said that I have no more good stem cells left (she had me on a SCT route until she contacted Dr Druker). I was dx with 180,000 WBC 600,000 PLT and a very enlarged spleen (it swelled a week before dx). She made her decision about the stem cells based on my spleen size and then on my blood counts that would not go back to normal. Could what she said be true? Even with the TKI keeping the CML in check for the last 2.9 years? If I am CCR doesn't that mean there are some healthy stem cells reproducing? Her gloom and doom way with me was so hard in the beginning. I was already so terrorized by the dx I couldn't sleep for almost a year. I was so afraid of the dark. I still hear her prediction of doom for me despite my new onc who has just a "wait and see" attitude and seems OK with things as they are. Wish I could let it go. I guess if I were doing better, I could.