Wow 35 that is young, I should be greatful that I wasn't diagnosed until 57 years. My 30's weren't bad but the 40's were great, was having the time of my life. Was a single mom with my kids all grown and gone. Great job, foot loose and fancy free, learning how to water skii, traveling to England, learning how to dance. Was on the board of Parents without partners and we had some pretty amazing activites. Then I met my husband to be in 1996 and transferred my job to where he was and got married a few months later, that was 17 years ago. Sorry got off tract just thinking back to when I was your age. I felt like I had life all wrapped in a pretty package and bow. My husband and I retired, started traveling and life was even more grand, than the big bomb CML and things changed. Not only with my CML but taking care of my dying mom and my husband health started to declined a couple of years ago, he retired from Chrysler, but works part time, but his memory has really faded. So here I am 65 years old with CML and looking after my husband. Stress is not good. Just got back from a month in Florida though and it was devine, really uplifting the spirit. Now I am back home and to the reality of doctors and decisions, sucks. I just want to sell this house, move to Florida and enjoy a few quality years of life. God just give me 10 good years in the sunshine.
Oh, your question I went to my previous oncologist for about 6 1/2 years and she had to send my labs to New Jersey, I live in Indiana. It was kind of strange because most of my FISH were always very low at 1 ? 3% but I was always at PCRU, now how could that be? Well my PCR started coming back bad, can't remember exact numbers, but one month it jumped like 18 % than next one up to 48 %, etc. I was freaking out. But than I noticed on the LLS board others were complaining. Well I called the Lab in New Jersey Gen Corp I think it was than, but they may be under a different name now, and i found out they had just changed over to the Internationsl Scale. Doc wanted to change my TKI right away and at about that same time, I got a letter from Novartis they weren't going to help with co-pay any more for Gleevec only Tasigna. Thought the coincidence was strange. Then I realized Gleevec was going Generic but Novartis got an exstension, I think Gleevec will be Generic sometime next year and the cost will probably drop down to a few hundred dollars for a 30 days supply of 400mg. I don't know, just guessing. But I wasn't worried about Novartis paying any co-pay as my insurance paid for most of it. So I stayed on Gleevec but I found out that Indiana University Cancer center just 15 miles from me did their own FISH AND PCR. Funny I asked my precious ono if there were was any place in Indiana that could run the FISH/PCR and she said NO. Perhpas she meant that she had right to, I don't know. Anyhow I decided to go there, to Indiana University, thinking my test would be more accurate. Don't know if that is true, but that is what I was thinking. Anyhow the onc there said I could never have been undetectable with a postive FISH, so go figure.
Well ever 8 years I am having some other health issues. I think it is a combination of old age, got a lot of miles on these organs, Leukemia, and TKI and other drugs, all wrapped into one.
There is another hospital close by that just hooked up with MDAnderson in Houston TX , they are on the some technical program, I am not sure how all that works. Anyhow I called them last Friday and talked to the nurse and she was describing one of the oncologist she thought would be a good fit for me. I'll just call him Mr V. I told her I was 65 years old and my organs especially heart and kidneys are showing some wear and tear and I wasn't looking for great FISH/PCR number, but a lower dose of TKI that would be less toxic and a better quality of life, of what time I had left here on earth. Also if I went on Sprycel I wanted base line montioring I didn't want to wait until I couldn't breath to find out I had PE. I called the pharmacy where my TKI come from and she said 50 % of their patients on Sprycel and are over 65 years with preexisting conditions develope PE, so see I am not crazy, that only make for common sense. We took care of my mom before she died and you can't give older patients adult dosage of medicine. Their organs aren't in that good of shape. Cardio doc siad those diurectic will wear your kidneys out and dyhydrate your organs. So I am only take 1 diurectic a week instead of everyday and it is working out pretty good, but had to change the blood pressure med around. She/nurse really did get it, I was a little surprised as I don't fit the protocol program for CML and TKI and all, and most patients don't feel that way. At least that is what the onc at I.U. says. Onc says most patients want the latest drug out and the high dosage. Wait until they are older and have been on these drugs a long time, they might not feel that way. Went to the orth doctor last week got arthrits spurrs on my thumb, hard to use, drop things. He gave me a hand harness and said he could give me steriod injection, but i needed to talk to oncologist as they can mess with your immune system. I got to thinking back to the year 2000 when we moved to a house that had a lot of overgrow landscape and also poinson ivy. I went to the doctor and he gave big dose of preedizone for a long time, I was just wondering if that might of caused the CML. I looked it up on the internet and yes it can damage your immune system and cause blood cancers. So I may opt or surgery on the thmbe to take the spurrs off but I am wonderiing if scar tissue will set in and if I develope fluid from TKI and my hand swells up will I be in just as bad shape. Maybe I should just wear the brace and live with it.
Anyhow that was a long answer. I have been depressed thinking about my kidneys GFR is at a stage 3, but I have got an appointment with a kidney specilist next week, the gal I talked to said most people can go a long time in stage 3. she said he will run some blood test, urine sample, check my electolytes, and get to the bottom of it. I guess someitmes they can change your diiet and perhaps slow down the process of kidney failure, we will see. My primary doesn't want to do anything until stage 4, but I want to find out all I can before that. I think it is more depressing not to know, I think educationa and power over options and choices is not as depressing as not knowing anything. But then medical science seems to be a bit of a guessing game of trial and error.
Glad your doctor is not worried. I think as long as you stay in a safe range you will be OK. I mean after all you could be undedectible, fly under the radar and still have a million + luekemia cells. The TKI only kill at the bottom level, they don't kill the defective stem at the top of the chain that was born from your bone marrow, the stem cell that created this whole mess which is at the top of the chain. TKI only kill the p+ chromosome at the bottom. Far from a cure. I asked the onc where is the promised cure he said 50 years, I think he wasn't kidding.
Trey and some of the other's got some good grafts, to show how it all works it really is an eye opener. Usually the doc's just tell you about the PH+ part of it and then people think oh, I am undedectible, cured, not so, but my doc says the less PH+ cell the less chance of the CML developing into blast or other things. I don't know I always tell them everything is a risk and I'm not losing my kidney and having PE at my age. So I don't know I'm just depressed over these new developements and scared to change drugs to Sprycel because he won't run the chest x-ray and ekg, until I can't breath. I said that is a funny thing to tell a patient, let me know when you can't breath. I said well are you going to be taking test and close monitoring, he says no only for Tasigna. But I have been reading some reports and talking to pharmacist and others and that is not necessarily true. I am wonderiing if perhaps now that I am medicare age, if that changes the guidlines. Could be, who know what 2014, the new ObamaCare will bring, not blaming Obama I mean all of Congress has got there paw's in this. So we shall see, but I think it will be worse for especially the elderly.
Now those are not happy thoughts, I need to think Happy thoughts, and trust more In God to help me get over this bump in the road and chill out, least I have a heart attach.
I was look at what you said about "doctor is not worried unless I go past 10%. Well when I went to I.U a year and 1/2 ago my Fish was at 1.5 % then it just sort of jump around the higest was the one six months ago at 13 % but then the lab Fish for June 13, 13 was only 4%. But I was thinking about changing to a low dose of Sprycel because I have problems with Kidneys and blood pressure and a few other issues. I don't know that all seem to have their toxicity, so I don't know if I should even change, might have worst problems. But I made it clear I was only starting at 50% Spyrcel and staying there as long as my number were around 1% to 5%. But I thought I was going to be closely monitor with x-rays and ekg, not so. So I didn't except my Sprycel Meds last Friday from UPS I sent tham back. So I imagine I.U. is shocked. I told them but I don't think they believe me. So I am off to another doctor, will it do any good I don't know, what the answer is, except my organs are not doing as well and I want a lower dose! and more test before I change. So I am throwing a fit, a royal pain in the butt. they probably think I have flipped out, maybe so.
Well go to bed. Good Luck,