83 replies to this topic

[thatguy]

Does anyone else use the search function to find answers to questions, then go off on tangents researching other members' history and experience? No? Maybe I'm just a creeper, but uh..I was thinking it would be a cool and convenient thing to have a thread that members could "hit" as often as they want, and not feel like they were stealing the spotlight so to speak, going to bare criticisms, or whatever- and post their drug changes, pcr results, persistent or reduced side effects etc (good or bad)....not to replace a thread that they're seeking advice with, but almost as a "hey, had this done, still here" kinda thing.

Maybe that way less people would fall into the seeming inactive "?" abyss, and continue their story, even if just a bare bones no-nonsense, not looking to make any friends post. Lol

Opinions? If this thread dies, it dies. Carry on.

[rcase13]

I'll bite, I hit PCRU 4/2016. It took 18 months. Have no plans of changing my Tasigna ever. However I am extremely jelouse of those that can take their TKI with food. Maybe after 2 years of PCRU I'll switch to Gleevec.

[acl]

I'll bite, I hit PCRU 4/2016. It took 18 months. Have no plans of changing my Tasigna ever. However I am extremely jelouse of those that can take their TKI with food. Maybe after 2 years of PCRU I'll switch to Gleevec.

Congratulations rcase13.  I am happy for you!!!

[thatguy]

5/25/2016- 0.501% i.s 800 mg Tasigna stil, no change yet  . - adjusted dosing time to 10:30 a.m and p.m. eliminated milk consumption, replaced water with Gatorade for dose. Eliminated Metamucil supplement.

[thatguy]

.534% - changing to Bosulif, pending insurance approval

[kat73]

It's your business, but I am confounded as to why all the monthly testing and drug changes.  You started only 16 months ago, you are almost at MMR, and you've already moved to Bosulif?  I can't understand why your oncologist (or insurance!) would call for almost bi-monthly PCRs, when everyone knows how much they can vary, even if the same sample was tested twice in a day, it would be different.  0.534, 0.501, 0.781, and 0.652 - they're all essentially the same.  Your trend has been steadily downward, on three different drugs.  What gives?  Why the alarm?

[thatguy]

Because the fluctuations upward. I'm worn thin with fighting everything in life right now, including my doctor's advice. He wanted it again, so whatever. The monthly pcr's, he ordered, as response isn't optimal- per 2016 guidelines. The bi-monthlies- me freaking out and going. I'm not doing that anymore though.

[CallMeLucky]

Although it is tiring, I understand that, it may be worth your while to get a second opinion.  I give that advice to everyone regardless of the type of cancer.  Preferably your second opinion should be with a noted expert that treats many CML patients.  Guidelines are just that "guide lines".  They are not gospel and not to be applied blindly.  You don't need a doctor then.  I can read the guidelines, review PCR results and check the boxes to make decisions.  A true doctor has a certain amount of wisdom that gets applied to their craft and practice.

 

If you have doubts, and for what it's worth - I would have doubts with the rate of changing drugs, you should seek that second opinion.  It may be worth your time, and if nothing else give you confidence in your treatment plan.

 

 

[kat73]

I'll bet you're worn thin!  By unnecessary worry and all those blood draws.  At the very least you should stay put on Bosulif, if side effects allow you to, and wait 3 months for another PCR.  The guidelines used to call MMR at 18 months optimal, and many of us missed that mark, held our course, and got there in a few more months.  Your onc seems to be in panic mode.  I would question his experience with CML and TKI's.  You definitely need a second opinion from a CML specialist.

[thatguy]

I agree with that plan. I'm fed up with the juggling of stuff that sucks enough in life, without the disease always riding shotgun. I'm also kind of finished with the fear crap, I accept the absolute worst case scenarios that i constantly contemplate, might happen, regardless of my efforts, and everyone else's. I'm sick of my own superstitions with treatment - " oh maybe I just need to add this, or subtract that, or do this at this time". I got more angry at this news yesterday, than anything. Angry that this stupid piece of garbage in body failed so soon and will impact my family indefinitely, and my attitude until I'm done here, and distract me from focusing on, and treating appropriately the very things that I'm supposed to enjoy.

Enough ranting. I hate CML.

[CallMeLucky]

I hear your frustration and I sympathize.  Your test results are odd, but the changing of meds and frequent PCRs is really very odd and no wonder you are stressed out.  You are constantly waiting for test results and you can't get your body to settle down and get used to the meds.

The biggest question is why the weekly PCRs, that is the thing I think most of us would question.  Anytime I have gotten a bad result and we discussed retest my Dr would say "we have to wait at least a month, there is no point retesting any sooner than that".  So I do think this is strange.

Your results show City of Hope lab, did you actually go to City of Hope and see a CML specialist there?  They are pretty well known for CML so would be surprised if this is the treatment plan they are sticking to.

Also have to question why Bosulif over Sprycel, which has a longer track record.  The mutation test was negative so why Bosulif?  All in all your numbers appeared to be on a downward trend.

 

So if you try to isolate some of the noise, you were on Gleevec for a while and got to 

1.891% in Dec 2015.  You then went to Tasigna and two months later you were at 1.133%.  They increased your dose and three months later you were at 0.501%.

 

Clearly you are not an optimal responder, but you are responding and you have a downward trajectory.

 

I do think you need to get another opinion from someone else just to get some sanity around this.  Changing the drugs so fast is not giving you enough time to tell if they are working.  My doctor would not change drugs unless I had consistent increasing PCR (whole log increases) or I had a documented mutation.  You don't have either of those.

 

 

[kat73]

Totally agree with Lucky.  You actually are doing very well and are in a pretty safe spot.  Yes, some people have responded quicker and deeper, but many - MANY - have responded less well and are doing well, with a good prognosis.  It seems to me you have been presented (and have read) some crazy negative stuff about CML.  Have you read Trey's blog?  Have you read the brochures LLS puts out about CML?  You need a new CML specialist who will calm your fears and help you integrate CML into a smaller place in your life than it's occupying now.  You can only gain that perspective and peace of mind with education and facts. 

[thatguy]

So get this... I got to thinking about everything that you guys have been saying and I called my doctor today and asked if I could go back to to tasigna if I didn't have a fast deep result with bosulif, (since clearly that's what he's looking for), to which he responded no. And surprising even to me, he then asked when I was going back to Banner to see the transplant team! Deininger at Huntsman will not return my calls- I left a message again yesterday and I've heard nothing back, and I'm freaking out right now because this guy clearly wants me to go for transplant which he stated would be best right now while I'm stable!


I can read the guidelines right now, and see that there is no requirement for transplant at ccyr, so what in the world is going on right now with this advice????

I'm trying to figure out what's what, like is this at all correct? Is this because I'm still not optimal on high dose Tasigna????

[mikefromillinois]

Time to find a new doc...sooner rather than later.  Personally, for my own peace of mind, I would look for someone who has a lot of experience with CML.

 

Mike

[Buzzm1]

Thatguy, have you transitioned to Bosulif?  Others here, who have stalled out on other TKIs, have had great success with Bosulif.  

[thatguy]

To answer both questions, I'm in the waiting process for Bosulif, and seeking an appt with Deininger who is a CML specialist.

[kat73]

I'm stumped.  There must be something we don't know here.  Can you ask him point-blank why he thinks you're a candidate for transplant?  I hope Dr. Deininger can see you and straighten it all out.

[mikefromillinois]

I'm stumped.  There must be something we don't know here.  Can you ask him point-blank why he thinks you're a candidate for transplant?  I hope Dr. Deininger can see you and straighten it all out.

 

It looks like transplants are one of Deininger's 'areas of interest' if this is the same guy:

 

https://www.healthgr...nditions_anchor

[thatguy]

I thought I heard that he worked with Druker? My insurance isn't contracted with him and I'm obviously not paying out of pocket for a transplant. I'm going to go ahead and assume he'd treat me with honesty and integrity...lol... not like these guys are starving in the streets for cash anyway.

[Tucker1]

That guy, yes Dr. Deininger did work with Dr . Druker. I was in a clinical trial form 4 and 1/2 years with him at OHSU. And I emailed him last year with some questions. Not sure about his take on transplant but I had full confidence in him.