8 replies to this topic

[Teresabourgeois]

Question:  What would happen if none of us could get our medicines any longer  ?  Assuming that we are in remission and the medicine was not available.  

[lala]

Hi....we would get very sick!  There has been talk about that on this site.  A sister wanted to stop taking her meds and the discussion was all about what would happen to her...... Lala

[JoshLee]

Uh, I mean, it could happen.....But it's not likely....This doesn't seem like a very worthwhile think to think about. We've got a lot of reasons to be positive, let's try and keep it that way!!!

[ChrisC]

If we were in "remission" as you say, it would be necessary to find out how long that had been the case. We can't say for sure yet what would happen. According to current studies being conducted under complete supervision on those who had been PCRU (your "remission") for over two years, so far about half the study subjects "relapse" within six months of stopping their medication, and the other half continue to show no evidence of CML even after more than two years. HOWEVER, we should assume that over time, until we have enough years monitoring to say otherwise, that there is the expected likelihood that the CML would return. When it returns, because it is a slow-moving condition, the first couple of years wouldn't be so hard, I think, then things get awful. Really awful. Fatally awful.

Message was edited by: ChrisC

[Teresabourgeois]

Thanks for the input Chris.  I'm really not trying to be negative.  I just think of things and blurt them out.  I would assume that more of us have pondered this thought.  My daughter has Type 1 diabetes  and I know that if she could no longer assess her insulin, then she would die.  I also have been reading a lot of postings about people that can not manager the cost of this medicine.  How sad!!!!   To me CML has made such wonderful progress in the last 10 years.  Now if we could reform our medical system so that everyone could afford it and still eat.  I am blessed that I started on Sprycel right after dx and I'm on a study at MD Anderson.  My medicine is paid for.  If not, the cost would have been $8000.00 per month on my insurance.  So I would have been on gleevac or tas.  My study is only for 3-5 years then I will have to make a decision.  Not even sure if I can go back to one of the older drugs.  Thanks again!

[ChrisC]

One thing you can count on, when something happens regarding your CML that challenges you to the point of worrying about it, you can always come here and discuss it. Meanwhile, "What? Me worry?" — thanks, Alfred E. Newman!

[Susan61]

Hi:  Try not to think like that.  Your letting your mind wander ahead to things that will not happen.  These TKI drugs have been the biggest miracle breakthrough for CML, and they are not going away.  Its only going to get better wth even better treatments, because they know how to stop the progression and what causes the disease.  Relax and just think how blessed you are to have this available to you now.

Susan

[CallMeLucky]

A particular drug company would be losing a lot of money.  Fortunately being the motivator that money is, I would expect someone else to be willing to step in.

[Teresabourgeois]

I was thinking back to the year 2000 when everything was suppose to go haywire.  My sister and I were talking about tough times in the world today and that is how this subject came to be.  I told her that if a horrible nuclear bomb hit that I wouldn't want to live on earth after the fact.  So my thought was that I probably wouldn't since I couldn't get my medicine.   She blew my theory saying "Not necessarily"  because I could just remain in remission.

Ya'll, I am not thinking negative.  Just thinking out loud.  I know how blessed and lucky I am.  I've even read the book by Daniel Vasella, MD that details how Gleevac even ever made it to the market.  That in it's self is a miracle!!!