Hello people-I was diagnosed with CML Jan '09. Was on Glyvec for 7 mos before it quit working. After about a month on Sprycell, it's apparently not working and my Oncologists is about to put me on a 3rd medication. If that doesn't work, he's telling me we will be looking at a bone marrow transplant.
I don't have insurance and from what I understand, the procedure costs between $300,000 and $500,000. Puts me in a precarious position.
Any input would be appreciated.
Doug
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treatment not working
Hello Doug,
It would be good if you could indicate the reasons your doctor gave for:
a. imatinib (Glivec) not working: resistant mutation? or some other reason?
b. dasatinib (Sprycel) not working ? no control of white cells? no cytogenetic response? 1 month is quite a short time.
I assume you are now to be put on nilotinib (Tasigna) which works by targeting a similar pathway to both the other drugs but in a more efficient way than Glivec.
If you have had a mutation test then it would be good to know the results. Your doctor should be able to tell you which mutation - if any- you have... or the other reason/s for lack of response to 2 TKI's.
However this is not unheard of and you may well respond very well to nilotinib.
Your will need to change your regime for taking this drug... fast 2 hours before and for 1 hour after taking each dose of 400mg twice daily. Unlike imatinib and dasatinib which are both to be taken with food.
You need to make sure you keep to a regular schedule when taking any of the TKI's in order to keep the blood levels of the drug at the right level. Y
You might not have been maintaining your levels for some reason and you should ask your doctor to check this.
It is a simple test to measure the level of drug in your blood just before you take your next dose.
This gives you the 'trough' or bottom level. At least for imatinib (Glivec) you should maintain >1000 ng per ml of plasma at all times. If you consistently fall below this then your response will not be optimal and you might fail to control the disease.
If this is true for imatinib then I am sure it is also true for the other two TKI's
Ask your doctor some probing questions about why he thinks your failed 2 TKI's.... this info will help you.
Where are you being treated?
In the UK transplants are paid for by the NHS which is the national health service that all those in work pay towards. All citizens can then get equal access to healthcare if and when they need it. It's a sort of pooled risk insurance.
But that is not helpful in your situation as you are in the US without insurance!
But hopefully you will respond nicely to nilotinib and the SCT option will not have to be tackled.
If you know the answers to why you failed both drugs then it might be possible to advise you about getting on a trial of a newer 3rd generation drugs.
Best wishes,
Sandy
Sandy
Thanks for the response.
Some history-As I said, I was diagnosed in Jan of '09. For about 7 or 8 mos, I was on Glivec and my blood counts stayed in line. A couple of months ago, they did a DNA test and although my blood tests were normal, the percentage of cml in my WBC had increased to about 60%. We redid the DNA test with the same results, so my doctor upped my dosage from 400 mgs to 600 mgs. In the following week, I went to the emergency room twice thinking I was having heart failure (excessive sweating, dizziness, heart pounding at abnormal accelerated rate, vomiting). The doctor took me off medication for 3 days after which my wbc blasted to around 65000. The doctor put me on 2000mg Hydrea + 600mg Glivec over the weekend. On Monday, all my counts were exremely low. wbc at around 3, rbc at 2 and platlettes at 3. I went into the hospital for a platlette transfusion and in the following week, we continued to have a low platlette count and a higher then normal wbc count. We switched to Sprycell and continued to have the same problem. I've had 3 platlette transfusion since then, the most recent yesterday. I started the Nilotinib Friday night 5 days ago. In my meeting with the doc yesterday morning, I asked the doc pointedly if given that the previous two medications hadn't worked, what were the chances that the Nilotinib would work. He told me odds were against it.
After reading your response to my initial entry, it's obvious to me and probably to you that I don't have a grasp of what's going on and I need to take a more hands on approach to the situation including educating myself to the different variables. You seem to be really informed. Thank you very much for the input. Absorbing your info and acting on it is a good first step for me.
Doug
P.S. I'm in Austin, Texas