83 replies to this topic

[thatguy]

Thank you, Gerry.


So... Dr. Deininger...top notch. What a humble, well-mannered, and knowledgeable man for our disease. I went with high hopes after seeing his name attached to many medical journals, trials and documents online, and left with my questions answered, and not feeling rushed. Very much appreciated his putting up with our tons of questions. It was a privilege to meet with him.

Huntsman- clearly an up and coming world-class treatment center. Clean, elegant, easily accessible, and all-around nice. My favorite that I've visited.

Synopsis (several things were expressed that were echoes of advice from you guys, too, so thanks for your words):

It was Dr. Deininger's opinion that I didn't fail either prior treatment, and rather responded pretty well, detailing that given my spleen size, wbc, basophil and eosinophil count at diagnosis, that I was a high-risk cp'er.

He also stated:
-he's happy with Bosulif as the current tki, as the side effect profile is safer long-term, and said that I likely won't ever be able to attempt cessation.

-pcr's done on the same sample can vary by 5-fold.

-although mmr is optimal, there is no data to suggest any increased O/S over a ccyr maintained for at least 24 months (which predicts a high likelihood of a normal lifespan compared to the general population), although intuition would.

-likely my last pcr's below the ccyr threshold, including the recent .881, are likely the same result, and furthermore, testing monthly in my situation is detecting irrelevant fluctuations due to sampling and testing variables. So 3-month pcr's, from here on.

-he said that transitioning disease from cp to ap, typically will display elevating basophils, promyelocytes and pcr, along with blasts, but typically intervention occurs when pcr climbs above that listed 5-fold range for 2 consecutive tests, and then a full mutation and resistance work up should be performed.

-losing ccyr (over 1%) is when alarms should be ringing, but should be verified with a follow up test, before treatment intervention.

-there is no optimal dosing time for tki's. It is most imperative for continual dosing at the same time, each day.

-Ponatinib, before SCT. Although any residual disease occurring after transplant, often will bare the mutations present before hand, and tki's are used as standard maintenance for 12 or 24 months following any cml SCT.

-he stated there are better statistics which haven't yet been published for SCT, and stated that given my profile, (God forbid) I'd have a 90% to 95% chance of survival with a 10/10 match, with the 10% mortality as a "higher estimation"... But this should only be approached if tki's are exhausted.

-returning to Tasigna would be an option in his mind.

-when asked whether we should watch our two kids closely for blood cancers, it was a "no, this was sporadic".

-when asked about my baby boy on the way, conceived during Gleevec treatment, again, he voiced no concerns, and said that quite a few have fathered healthy babies while on Gleevec.


What an enlightening, validating visit. I'm really glad we have the ability here in the U.S to schedule with different doctors and facilities with out a huge wait, or government agency approval.

[gerry]

Glad it went well. :-)

[r06ue1]

thatguy, glad he put your mind at ease, I know you were having a tough time worrying that you were going to lose CCyR and such.  Most of what he said are things you also hear on these boards (some new info also so thanks!) so there are some very knowledgeable people here too.  Just remember, as long as your PCR is not jumping an entire log, you're within the variance of testing.

[kat73]

Super happy you found Dr. Deininger and put your fears to rest.  It makes all the difference in the world to have confidence in your doctor, and to have one that truly listens to you and makes you feel you aren't crazy, dosen't it? 

[Frogiegirl]

Yep    Like I said I really like Dr. Deininger he always laughs at me and says how do you know all these things....smart girl he says. lol  I've asked him before when can we make a baby? he said well that's up to you two, I don't think I should be there. bahahahaha  I feel like he has great manners and a good sense of humor at the correct times.  I feel very supported by him. he talks me through every question and never rolls his eyes or acts like didn't I just answer that last time? I'm glad you were able to meet with him, I feel very fortunate to have him as my doc.

[thatguy]

Yeah, thanks Ro6ue and Kat.. it sure does. To have validation of that information by a specialist in our disease, like Him, it was well worth the trip and expense. I can breathe between tests now, a bit.

Yeah, Frogie, he seems like a very likeable guy, and a great doc...It's unfortunate, he didn't just stare calmly and slowly loosen his tie, with a set up like that. Lol. I'm going to be seeing him on a yearly basis from here on, for monitoring.

[snowbear]

Diagnosed November 2014 with a WBC of 50+, 92% FISH and 23.5% BCR-ABL;  started Gleevec on 12/30/2014. I don't remember all of the test results but my last ones at 18 months are 3.5% FISH and 1.08% BCR-ABL.  Not too impressive, but the #'s have been steadily but slowly going down and I'm not bouncing up and down so doc is willing to give it another 6 months before she considers switching to Bosiluf. 

 

 Right now, I'm having some issues with shortness of breath and low blood oxygen that is being checked out, so that's another reason for not switching now.

 

Asides from the puffy eyes, it's hard to tell what might be side effects of Gleevec and what is due to Inflammatory Arthritis but I have a lot of fatigue and pain.  Most of the time the pain is tolerable (or maybe I've just gotten used to it) but it does limit my activities along with the breathing issues.  I do have Rx for Tramadol and Flexeril for when I really need some relief.  I don't think I will ever get used to the fatigue.  It's soul crushing at times.  I take a multivitamin, high dose of Vit D, B12, folic acid and iron.  

[thatguy]

Best wishes, Snowbear. Of the 3 tki's I've tried now, Gleevec was the roughest (knock-on-wood) for me... good luck.

[thatguy]

.432% i.s, wooooo! Bosulif- some skin rash, diarrhea and headache.

[Buzzm1]

So 3-month pcr's, from here on.

 

that didn't last long ... back to every month again? ... 

[thatguy]

I went for my cbc and they ran the pcr anyway... that was the last one on standing order though.

[AdamJ]

Great news that your PCR went down with the Bosulif!  Hopefully the side effects will taper off a bit as your body adjusts to the new medication.

[Trey]

TG,

One of your biggest issues was too many PCRs too close together showing a misperception of lack of fast enough response.  In reality you simply had the standard Tasigna plateau, and one random small blip upward.  Although the switch to Bosulif was just fine (no reason is needed to switch drugs) you could also do well on Tasigna long term.  There is no reason to worry about your future.  Look forward to the birth of your baby boy and seeing him grow up.

[thatguy]

Thank you guys, I appreciate that, and I think you're right on about the Tasigna, Trey. It's been a learning curve for sure, and test of my patience. I needed that validation from Deininger, and wish in retrospect that i would've gone a bit sooner. I must say that an immediate direct benefit I've had, is being able to take multi vitamins again, fish oil, and other supposedly non-reactive supplements, without a debilitating migraine occurring in the following day, which was the case with both Gleevec and Tasigna.

My Dr. has since corresponded with Deininger and I believe may have gained/reevaluated some valuable CML disease/treatment management expectations. Hopefully future patients will benefit as a result. They have a tough job, and the amount of knowledge they have to learn and retain is tremendous. Hopefully this was a beneficial series of events for many, including readers on here.

The boy's coming in 2 weeks and at check up last week was already 7 lb 4 Oz they estimate...bigger than his sister was at birth. Lol. Poor Mom.

[AdamJ]

I think I just hit a major milestone, but I am wondering if there is a possibility of a bad test so I am trying not to get too excited. On August 22nd I took my first PCR since diagnosis back in March and the results came back pretty amazing.  My value went to 0.0035% IS.  I was tempted to ask for another PCR to confirm it, but I think I can wait a few months and hope that it was accurate. Has anyone else experienced such a rapid decline in their PCR values?  Has anyone seen a very good number like this only to discover that subsequent tests were off by a log or more?  I have to say I was very surprised by the result. I was hoping to see a zero to the left of decimal point and had no expectation of any on the other side based on discussions mentioning a plateau.

[Gail's]

I switched from gleevec to sprycel about 6 mos ago, 100 mg daily. My pcr dropped like a rock compared to the slow, slow descent with gleevec. Makes me wish I'd been on sprycel from the start.

[AdamJ]

Thank you Gail, I hope that in my case the number is accurate and my experience has been similar to yours.  Initially I was given the choice between Gleevec and Sprycel and I opted for the Sprycel because the doctor told me simply that it was better.  Based on what has been a good response so far (despite the initial liver issues) and also on your experience, it seems that it was the right choice.  I will feel a little more at ease when I see a second PCR that has a nice low value like this. I think I will ask for another one at my next visit to the hospital.

[thatguy]

I think I just hit a major milestone, but I am wondering if there is a possibility of a bad test so I am trying not to get too excited. On August 22nd I took my first PCR since diagnosis back in March and the results came back pretty amazing. My value went to 0.0035% IS. I was tempted to ask for another PCR to confirm it, but I think I can wait a few months and hope that it was accurate. Has anyone else experienced such a rapid decline in their PCR values? Has anyone seen a very good number like this only to discover that subsequent tests were off by a log or more? I have to say I was very surprised by the result. I was hoping to see a zero to the left of decimal point and had no expectation of any on the other side based on discussions mentioning a plateau.

That's awesome, man. It's likely accurate. My best advice, based on my trek so far: try your best not to think about the disease, other than taking your meds religiously, and following warnings for what reduces med absorption.....


Even if not accurate, you're likely at a very low level for it to degrade that low, and still be viable for the lab. Good luck, buddy!

[gerry]

I think I just hit a major milestone, but I am wondering if there is a possibility of a bad test so I am trying not to get too excited. On August 22nd I took my first PCR since diagnosis back in March and the results came back pretty amazing. My value went to 0.0035% IS. I was tempted to ask for another PCR to confirm it, but I think I can wait a few months and hope that it was accurate. Has anyone else experienced such a rapid decline in their PCR values? Has anyone seen a very good number like this only to discover that subsequent tests were off by a log or more? I have to say I was very surprised by the result. I was hoping to see a zero to the left of decimal point and had no expectation of any on the other side based on discussions mentioning a plateau.

Hopefully it is accurate and if it is you could be a good candidate for trying cessation after two years PCRU.

[thatguy]

20 mo. Lab -.325%
-all other counts normal
-no perceived side effects from Bosulif, dosing ease destroys Tasigna.
-have a healthy new baby boy, 2 mos. old.

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