I was dx'd with CML almost 6 years ago. After being on Gleevec, Sprycel(when it was in trial phase), I was then put on Pegasys, Interferon. I have been self-injecting once every 3 weeks for about 3 1/2 years. Just wondering if anyone else out there is taking Pegasys Interferon and wondering how your treatment is going, side effects, etc . I was told by my Onc that I didn't need BMA anymore while on the interferon. That is one pain in the butt I am happy to do without!!! Would love to hear others experiences with Interferon!
Pegasys Interferon, anyone?
Posted 03 May 2011 - 12:38 AM
Are u on Pegasys Interferon only or are you in combo medication with Sprycel or Gleevec ?
If you are already in PCRU for 3 yrs, one may still need BMA yearly, wonder why doc do not monitor BMA. Do you still do PCR test with your peripheral blood instead ?
Posted 03 May 2011 - 09:22 AM
I've heard of a few other people with this regimen. I am wondering why though. This is not the typical treatment for CML. Are you in a trial? Were you unable to tolerate TKI drugs? Do you know what your FISH and PCR statuses are?
Posted 04 May 2011 - 01:09 PM
I am only on interferon, 180 units once every 3 weeks. I get my peripheral blood checked every 3 months.
Posted 04 May 2011 - 01:12 PM
Would you be willing to share why you are only on Interferon? You said you were on TKI drugs but now you are on Interferon, did the TKI drugs not work for you?
How are you doing on Interferon? Do you know what your FISH and/or PCR status is?
Just curious, if you do not want to answer, I understand.
Posted 04 May 2011 - 01:18 PM
I started off on Gleevec after I was dx'd in 2005. I had terrible intolerable bone pain. After trying various doses, schedules and even taking a break and going back on it,to see if the bone pain came back or was just an initial response. I started Sprycel while it was in trial and had the same bone pain with it. I would have stayed on the Sprycel perhaps, but I failed the drug trial(my heart rate was down to 36 ) so I was removed from the trial because it was just not safe for me. I began Interferon shortly thereafter-there was nothing else at the time, and my Onc figured I would probably have the same response with bone pain to a new TKI anyway. But that is neither here nor there, as there was no other TKI then. I have done well on the Interferon-I still have the bone pain, and did as soon as I started it, but with the meds I am taking now at least I am able to live a 'normal' life, I wasn't able to on Gleevec. I was 2.9 log reduction last time. My onc explained to me the log number isn't the same as for the TKI's, because the medicines are totally different and remission is not measured in the same way with Interferon. I do know I am doing well, and bld counts have been stable for over 3 years!
Posted 04 May 2011 - 01:23 PM
Wow! Thank you for sharing that interesting information. I am sorry in one sense for the trouble you went through, but very happy to hear that this other option is working for you. It sounds like you have a good doctor too. I hope you continue to do well and thanks again for putting out there what could be yet another option for someone with this disease.
Posted 04 May 2011 - 10:35 PM
Nice to know you are doin well with interferon. One thing I am confused is the BCRABL log reduction in your case, where you doc mentioned the measurement with TKI and interferon is different ? I thought the BCR-ABL gene log reduction should be the same procedure or standard (IS) wheter you are in Interferon or TKIs, as it is referenced to the baseline standard BCR-ABL gene. Why there is a different ?
I heard there are patients that with interferon who did well in studies, some could stop the medication as the immune system is capable of controlling the BCR-ABL gene. I was wondering if you doc has any trial who are successfull.
Best of luck and wishes to you, may you be well...
Posted 05 May 2011 - 09:20 AM
The log reduction and treatment goals for TKI drugs and Interferon are the same, since both are measured by BMB, FISH, and PCR. The exception is that expectations are lower for Interferon, since it generally does not work as well, or as long as TKIs. So the treatment goals might be less optimistic for Interferon than for TKI drugs.
For the others reading this, Interferon is a naturally occurring enzyme in the body, and its purpose is to stimulate the immune system (T-cells) during periods when they are needed. Interferon works against leukemia by increasing the numbers and sensitivity of T-cells, so they will be more aggressive, and target leukemic cells instead of leaving them alone. This was the primary treatment method before Gleevec came along. But Interferon did not work nearly as well as TKI drugs for most people, and the side effects were often severe, and many could not tolerate it in therapeutic doses. But a few people can do well on Interferon over a longer term, and can tolerate it, but those cases are somewhat rare. A few people never switched to TKI drugs and have remained on Interferon over the years. As with anything, there are secondary issues, and Interferon can cause autoimmune responses in people, which means the T-cells attack more than just the leukemic cells, and attack other normal body tissues.
There are current clinical trials looking at TKI drugs plus Interferon in low dosages. Some think this could be a potential cure in some cases, but it is still specualtion and has a long way to go. The clincal trial is being done by Dr Talpaz at the University of Michigan:
Here is a comparison of Gleevec and Interferon responses:
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