83 replies to this topic

[Frogiegirl]

I've been with Deininger since diagnosis, he wanted me typed and set up with a match when I first started treatment, stating he just wanted a back up plan if treatment failed. He never pushed a transplant. But unfortunately I'm one of the "unlucky" ones with no matches in the "be the match" registry. 7/10 at best. Luckily tasigna has worked well for me. But that's just my experience with him:)

[thatguy]

Thanks Tucker and Frogie... I'm sorry to hear Frogie, but happy for you and the positive response. Well...I faxed all of my records today, so hopefully I'll get an appointment and some peace of mind. Hopefully the Bosulif works, and I hit that mark soon. My wife called and jumped on my Dr. today after I relayed the message to her, and she said that in her phone call, he said he was NOT recommending starting transplant, but had instead forgotten that I had already went and had the matching performed, (which is what he meant he wanted me to do). So in this conversation, he also told her that he wants me to "try Bosulif and hit MMR by 18 Mo or very, very close, or consider transplant, because if MMR isn't reached, it's not a matter of if the disease will transform, it's when...and when it does, success is not likely." and also that "the choice is entirely your husband's"...sooooo yeah.  Like I said a few posts ago, I'm just sick and fed up with crap of this. I went digging through statistics today of course, (you know, because it's what normal people our age do in their free-time) and concluded that if I don't hit MMR by 18 months, I have like an 80% likelihood of living decent  for about 9 years, and if I go for transplant I have at best a 70% to go 5, but with more risks to quality of life, and the obvious, mortality- BUT the chance of cure. What wonderful thing that would be.... Maybe those statistics will close-gap, but I'm not much of a gambler. Really just want professional affirmation or dismissal of a treatment plan, soon...

[kat73]

Here's what I'm seeing:  You promptly responded to Gleevec, going from 14 down to 1 in 4 months.  Then, for some reason, you switched to Tasigna (side effects?) and you continued to improve (with one blip at 4) downward to .5 in the next 5 months.  THEN, for no good reason you were switched AGAIN, to Bosulif.  And now you are being threatened with transplant if you don't make it from .5 down to .1 in 3 months.  THIS IS NUTS.  It looks to me like you never needed to leave Gleevec - you didn't even stay with it long enough for side effects to calm down.  Ditto for Tasigna.  But to move to the third and last (pretty much last) drug before transplant is just crazy, with your numbers coming down like they have.  You could probably return either to Gleevec or Tasigna and get the same good results.  Or stay with Bosulif.  I hope Dr. Deininger will take you in hand and settle you down.

[CallMeLucky]

There is either info we don't know or your doctor is an imbecile.  How about this, take a look in your research at all the people who went into the Gleevec trial when they had already been sick with CML for a long time.  Back then there was no choice of other TKIs if the doctor wasn't satisfied with how fast it was working.  They were just grateful they had something and they used it and waited to see what would happen.  Most of those people are still alive today and doing well.  Your doctor lacks experience and patience.  Please stop making yourself crazy with his advice - I know that is hard, but do yourself this favor.  Go see another doctor.  You are far from needing a transplant.  

 

Here's some other things to consider with CML as a disease.  The problem with CML is that it causes your blood counts to increase to the point they drown out red blood cells.  Ultimately that is the problem, there is more to it, but at a very simple level that is the issue.  So right now your blood counts are normal.  First check point and most important thing to "stabilize the patient".  As long as your blood counts stay normal, you continue to live.  Everything beyond that is about trying to keep things stable for as long as possible.  So we look at CCyR.  In this state, if you are CCyR, you pretty much can't find actual leukemia cells.  For a long time it was considered if you obtained CCyR and maintained it, that was all that was needed to survive.  Look at statistics for Overall survival and you will see they are still very high even for people who did not reach MMR.  MMR is a checkpoint that the studies showed, for the most part, if you reached MMR your disease should not progress.  Note that there are no absolutes or guarantees with that.  There are people who never reached MMR that held steady and there are people who did reach MMR that down the road progressed.  Cancer is a tricky thing.  You are trying to play an odds game, get the best response you can for the best odds at long term survival.  Not reaching MMR is not a death sentence.  Further not reaching MMR by the average time is also not a sign that everything is going to go to hell.  Some people respond fast, some respond slow.  You have a downward trajectory and no mutations.  There is nothing here to be overly alarmed about other than a doctor who appears to only know how to treat this disease based on what he read in a pamphlet.

 

Oh yeah and jumping to Bosulif and bypassing Sprycel makes no sense what so ever.  Gleevec and Tasigna work very similar, whereas Sprycel and Bosulif work at it a bit differently.  If Gleevec and Tasigna weren't working (they were working BTW) the next logical choice by any Oncologist would be Sprycel.  To go straight to Bosulif sounds like someone had a visit from their Pharmaceutical rep that week.

 

 

Give yourself a break, go see the specialist and just give this thing some time.  You're going to look back on this years from now, as I have been doing myself, and say "I can't believe I spent so much time worrying about it, and no matter how much I worried it didn't make a difference".  Enjoy your life, you still have a lot ahead of you, even with CML.

[thatguy]

Thank you both for those great replies. I finally got my appointment scheduled this morning with Dr. Deininger, thankfully.

[kat73]

OK, great!  Get back to us what he says.

[thatguy]

Well that's all she wrote for Tasigna. Went for a last ditch PCR 7/15/2016, to decide whether to keep with the Tasigna or continue with my new prescription. Stayed and prayed on the Tasigna for the following week and got the results today that my numbers nearly doubled in 15 days, and in the time that lapsed since testing, I fear I may have lost CCyR. Took my first Bosulif pill an hour ago...Not to throw a pity party, but I never thought I'd be in this position, at this age....this is obviously a steep increase in transcripts, wondering if I mutated, or am progressing...

[AdamJ]

Best of luck with the new treatment. I am pretty new here myself (Dx almost exactly one year after you were). I have been though a few rounds of drug changes myself, due to liver toxicity and I fear that I have a long road ahead and I understand your frustration. I hope that the Bosulif will quickly put an end to your PCR increase and allow you to move beyond these issues.

[thatguy]

Thanks buddy, same to you. Be cautious of change for toxicities (unless theyre very serious ofcourse), because typically after time, they can subside (My headaches, enzymes and blood sugar did at least).

[kat73]

I hope Bosulif grants you success and peace of mind. 

[Melanie]

Hoping Bosulif works well for you! What dosage are you starting at?

[thatguy]

Thank you both. 500, Melanie.

[Frogiegirl]

Hi thatguy! What did you think of Dr. Deininger?

[kat73]

I'm going to go out on a limb here and suggest gently that perhaps your emotional distress about your own situation is strongly colored, if not inextricably entwined, with your father's recent cancer death.  I'm really sorry about your dad.  Your distress seems so outsized compared to where you really are, and you have not been helped by our telling you so, that I can only suggest strongly that you get some counseling.  I hope also that Dr. Deininger will help you.  Please, please share your fears - let him know your mindset.

[thatguy]

Yeah, you're right. I deleted that nonsense, sorry for that..

[Kellyb333]

Hi thatguy, how are you feeling on the Bosulif?

[Frogiegirl]

Thatguy I must have missed your post, hope I didn't upset you asking you how you liked my doc?

[thatguy]

No, no. Not at all, I see him today actually, so I'll let you know! Sorry, Frogie.

[thatguy]

Hey Kelly, feeling good on the Bosulif, (knock on wood). No felt side effects yet. ...

[gerry]

Fingers crossed, minimum side effects and a downward trend.