First timer here, although I have had a lot of comfort and help from reading the info on this site and the many comments on the forum. What a wonderful support group this is. My husband was diagnosed with CML on 29 June this year at the age of 45. We were told he had every symptom associated with CML, including an enormous spleen. We had the option of the Dasatinib trial but decided against it due to the good results of Imatinib and the fact that taking part would mean hubby having to travel to a hospital much further from home. He was very ill so a local hospital appealed to him. I now wish I'd had the strength to find out more in the beginning - I didn't even understand the 1st and 2nd generation drug thing and couldn't face reading anything about CML. He started on Imatinib (early July) and at each appt we were told his blood was coming down and the spleen was shrinking nicely. By the beginning of October his WBC had went from 260 to 12, however, the doctor could still feel the tip of his spleen. We went back to the hospital 4 weeks later and were surprised when the doctor said his blood counts still weren't where he hoped they'd be and he would definitely have changed him to nilotinib that day if it wasn't for the fact his spleen was now normal. The doctor said they would be doing a more sensitive test this time to see how things were. I assume this is the PCR test (I could be wrong) as he confirmed hubby was 100% at the time of diagnosis and he wanted him down to at least 10. He confirmed we'd get results at our next appt. I went from very hopeful to very worried in an instant as I didn't think it bode well that based on the normal blood tests the Consultant was already talking about changing medication. Unfortunately, we went back last week and were told that the result of 10 hadn't been achieved - he's now 92 and was immediately changed to nilotinib. The Consultant, who has been wonderful and is always very positive, said he could keep him on imatinib longer as there had been some response, but he says he wants to be proactive in making the change quickly. From reading about other peoples results it doesn't seem like any kind of response to me, so I'm not sure if he's just trying to make us feel better or if it's me making use of my newly acquired paranoid tendencies. We're so glad the change has been made but we'd convinced ourselves imatinib was going to work, and it hasn't, so now the worry begins for the response to nilotinib. Is it possible that such a poor response to imatinib means it's less likely nilotinib will be successful?
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worrying failure of imatinib
Dear Audrey,
Your husband's doctor is right to be proactive and you should both be very reassured by that. He has obviously taken note of the recent publications of research(Marin et al) that has shown that by reaching <10% (<=less than) bcr/abl - a major molecular response- is the best guarantee of long term stability of response and survival.
Switching to nilotinib is currently one of the best options for securing a deep and faster molecular response- if your husband disease is responsive to TKi therapy he will no doubt see a more dramatic fall in PH+ cells down to below 1.5%...then on down to a major molecular response to below 0.1% bcr/abl and below.
It is early days but your husband is obviously in the right clinical environment with a proactive doctor- not everyone is so fortunate.
I feel for you- it is so difficult to be supportive and optimistic when you too are scared. Please update here as his results come through- I am sure all will be well and he will respond according to current best practice.
Best wishes,
Sandy
Hi on reading your post a few things reminded me of how I felt. I am 46 and I chose to go on the Spirit II trial (praying I would get dasatinib)and luckily I was given dasatinib. I was so hoping that I would get this drug,as I thought it was the best drug, ( in my mind)
It went well for 2.5 years but due to complicated side effects they decided it was best to come off them. I was devastated as I thought this was my drug.
I am now on nilotinib too. Since taking this I have felt human again and have a lot more energy - I havent had any results yet but going on how I feel I presume they will be good. You should also find that Nilotinib being a 2nd generation drug should give your husband a fster response
I do hope it works out for him
best wishes
Hi Audrey
Please try not to worry, easier said than done i know. When I was dx in feb 2011 I was given Imatinib I was on them for 12 months and felt rubbish and I could not get my Bcr down any lower than 9% in June they began to rise and I was changed to nilotinib. Wow is all I can say I feel loads better on them have way more energy and best of all I am now at 0.112% Bcr and that was in just 4 months. So please try not to worry nilotinib is a great TKI and I have heard so many stories about how good it is x
Thank you so much to everyone for their comments. Unfortunately, after 8 days on nilotinib, my husband had to contact the hospital about his racing heart and a very bad rash. His body and arms were all pimply and itchy but from his neck up it was different - he was very red, itchy and his scalp was quite sore. It looked like a bad case of sunburn. His Consultant was on holiday but the Dr he spoke to told him he had to stop taking nilotinib immediately. An ecg showed his heart was ok (just very fast) but there were concerns about the severity of the rash. That was last Thursday. His Consultant is still on holiday so we have an appt with another Dr in 3 days time. She spoke to my husband on the phone today and confirmed that because of the severity of the rash he won't be able to take nilotinib and she intends starting him on dasatinib. We had hoped they'd be able to give him something for the rash but it seems not. Trying to stay positive but I can't believe we're only 5 months down the line and he's already going on the 3rd option. Just hoping dasatinib is the drug for him. Hopefully, the Dr will be able to explain more when we see her on Thursday.