Sunday, April 4, 2010

Pulling Over

Wow, these last 3 days have been peachy keen! Nope, not because it's been a long weekend with great weather, not because Butler and Duke are playing in the NCAA basketball finals tomorrow or because the U.S recently announced much needed major reforms to healthcare........these last few days have been awesome because I'm drug free!

Last Thursday I had minor surgery to have some tissue removed from my tailbone- in order to speed up the recovery process I've been advised to stop taking Gleevec for 1 week and I was even ordered to skip a dose of Pegylated Interferon!?!!?? I have not been on a drug holiday since I was diagnosed back in December '06.......I totally forgot what life feels like on the other side.

Over the last couple of years I have conditioned myself to regular take my meds. On Thursday evening, I was forcing myself to eat a large pre- Gleevec meal.......a few bites in and I dropped my fork on the plate, it hit me at that instant- I didn't need to eat because Gleevec was off the menu for the next short while. Cool!

In addition to stuffing my face, I usually have Gleevec right before I go to sleep with copious amounts of water........(this usually means answering natures call at around 2am.) I find consistently following this procedure minimizes side effects. What are your pill popping rituals?

So, these last few days there has been no ingestion of TKI's or Sub-Q injections.........I could get used to this! I have an appointment with my Hema-Onc this Thursday, I'm going to request a drug holiday extension. From what I've heard from other patients, Gleevec takes 7 to 10 days to completely leave your the 7 day mark I'll have to resume G-vec. I will request a 1 week extension- I'm pretty sure I will be denied but hey, you don't lose anything by asking.

This feeling I've had these last few days is hard to put down in words; is it a sense of normalcy? Maybe it's the freedom; not feeling guilty when you pass out on the couch and wake up at 4am to realize you forgot to take your pill. Or perhaps it's just the overdue break from routine that I think I needed, I mean every driver needs to pull over from time to time to recompose themselves.

I am in no way endorsing that you stop your medication, I would not have done so unless I was given the green light by my doctor. What I will say though; the drug free experience I have had over this past weekend has only reinforced my decision to undergo combination therapy. The thought of exiting CML Boulevard in 2o months is exciting, it would be awesome if there was bumper to bumper traffic at the exit...............GOOD NEWS! (Woah- isn't this an optimistic post!?!!?)

The University of Michigan and Dr. Talpaz have announced that the flood gates are wide open......they want to up the number of patients on combo. therapy and they will be quite accommodating to patients. Canadians/Americans/Overseas........all are welcome! Jerry Mayfield made the announcement on his website on March 11th. Dr. Talpaz has a strong belief that combo. therapy has curative effects and it has been reported that he believes up to 85% of patients could be CML free after undergoing trial protocol.

For those patients who have already shunned the idea of TKI + low dose Interferon- I would like to hear your reasons, just an informal discussion amongst patients. Perhaps their is something myself and others undergoing combo therapy have overlooked. If you have decided to try out combo. therapy- what were you reasons for wanting to try this?

Please post below, this is a hot topic which could change the way this disease is treated.

That's all folks.



  1. Hi CML Kid,
    Enjoy your drug holiday :-) I have not had one in over 4 years (I am on Sprycel). I have totally forgotten what drug free feels like, but I do remember that I was so surprised at how well I felt....

    Re combo therapy - I would love to try it, but there are several issues that prevent me from taking the plunge:
    1) I am currently on a Spryccel study where i get my meds for free.
    I am pretty sure that if I switch studies, I would have to pay for all my meds, and we all know the cost involved..
    2) I am very sensitive to drugs, and I am concerned that I would not tolerate the combo, and then be back where I am now, on Sprycel -except paying for it out of pocket (which may happen at some point anyway, but I am pretty sure I have at least another year, since other people have been on the study for 5 years)
    3) The study is only available in Ann Arbor. I am in Denver - the hassle (and expense again) factors are not insignificant...

    That said, if the trial proves successful (and I keep my fingers crossed that it will be), I look forward to getting on the train in 4 years, and being drug free 2 years after that - 6 years of meds looks much more appealing than decades!


  2. Hi CML Kid,
    First time I have looked in on your blog. I have had a series of 3 drug free holidays (because of pleural effusion) since Sept., each lasting about 2 weeks, and each time my PCR increased significantly. My ph+ cells are way too active, and rearing to break free the minute I am off my this is not an option for me. I am still looking for a drug to give me a low pcr. I am a long time turtle with what they call primary cells just outsmart the TKIs. But my cml (dx 11 years ago) has been stable, no mutations, etc.

    One thing about inf. is that if a person also has any form of auto-immune disease, the inf. can rev it up. For me this is psoriasis....when I was on inf combined with ara-c and HHT, my skin was horrible. On the TKIs the skin is actually much better and this is because the TKIs suppress the T cells (suppress the immune system).

    I think there will be more than one way to slay the dragon....and that down the road there will be other options that might cure cml or get folks off drugs. Interferon has been Dr. Talpaz's baby since the get go, so I wish all who do participate in this trial (and are qualified) good luck with it. I will also say that combining Gleevec with interferon is not new.....Dr. Druker was combining Gleevec with either ara-c or interferon in some early trials, and I don't know how any of them came out.....but this was from the time of dx (I believe) and not after a deep level of response.

    Best to you,
    Nancy C.

  3. Hey, CML Kid,

    Nice post, and enjoy your drug vacation! I have not had a "drug vacation" in thirty years, since I am Type 1 diabetic, requiring insulin since diagnosis at age 11, in addition to having CML now.

    I would LOVE to off Gleevec. I am considering doing the combo trial with Dr. Talpaz. My concerns are: 1) I have diabetic retinopathy and just had a bleed into the vitreous ("liquid center") of my left eye around Christmas time. I still can't see out of my left eye. I know interferon aggravates retinopathy. Is my choice between CML-free and blind vs taking Gleevec indefinetely? (I've been in molecular remission for almost ten years now on Gleevec alone.)

    Concern #2: I have quite a bit of fatigue while taking Gleevec. This has affected my ability to be "present" at work, in the sense of awake and alert. I am single and the only breadwinner in my small family of strays (of my lovely dog and his sister, the cat). I can't afford to lose another job and I couldn't afford to live on disability.

    My question to myself these days: If gleevec + interferon really leads to a "cure," then why not let the concept be proven by other folks (sorry!). If it works, or is likely to work for me, then I will consider it more strongly once that is known. If the studies show otherwise, then I have optimized my chances of being able to work and maintain my energy level by NOT adding the interferon. (Not to mention, possibly my eyesight.)

    I am very hopeful for you and envy your enthusiasm, I must admit. Go, CML Kid, Go!!

  4. Hello Kid,

    I can understand your excitement about a drug holiday. Since I have been on the CML highway for close to ten years now (I am grateful for being on the CML highway, but I too want to find my exit and remain healthy), I have had several holidays for one reason or another. The first holiday was for about 3 weeks after a bout of pancytopenia (all counts dropped precipitously while trying to determine the correct dose of IFN - before the advent of TKI's), then another drug free holiday as a wash out period before switching to Gleevec. There have been a few more here and there for one reason or another. I do recall, during my second year of Gleevec therapy and being CMR, and giving myself a drug holiday because I was fed up with the nausea. I took two weeks off - it was amazing. I was nervous, but it felt so good not to have any nausea. When I restarted Gleevec it took about a month for the side effects to come back, so all told this gave me a 6 week break from serious nausea. The bonus was that my PCR remained undetectable.

    I am now on Sprycel and IFN. Sprycel has a very short half life, therefore it doesn't take so long to get out of your body. There was a good paper at ASH this year about having a weekend holiday from Sprycel for anyone who had side effects and how this worked quite well.

    As for the trial with Dr. Talpaz, I have quite a few friends in Europe who tried this and they are drug free. I hope to be drug free soon myself, we'll see.

    Unfortunately not everyone who can or wants to participate in this trial will be able to and that is a shame.

    In my case, my insurance company can figure out that two years of extra costs that may lead to me being healthy and drug free in the long term is a safe investment. I can convince myself of that as well.

    There were some other trials of Gleevec and INF that were not so successful, that was because unfortunately the doses that were given were too high and created some side effects that made it hard for patients to stay on the protocol. What Dr. Talpaz and others have learned since then is that with IFN smaller doses actually work better for two reasons, 1.) patients can stay on the protocol, and 2.) because patients can stay on the protocol, it works much better.

    This is what you Kid are finding out also.

    In my ten year "career" with CML, I have been on IFN either as a monotherapy or in combination with Sprycel for all told about 6 years. I have Raynauds syndrome, but I can't say that the IFN exacerbates the problem. I think it was much worst on monotherapy Gleevec or Sprycel.

    The other thing to think about is that before Dr. Talpaz accepts anyone in the trial there is a pre-screening done. Patients who would clearly not benefit from this approach would not be en-rolled. So, if it were me, I would certainly invest in the plane fare and have a consult with Dr. Talpaz.

    Since being on low dose Sprycel and low dose IFN, I think this would be an exciting trial and my understanding is that BMS is quite curious about this as well.

    These are exciting times for all of us and thanks Kid for this blog and raising awareness of this important opportunity for many patients.