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Was told I would need bone marrow transplant


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#1 redonkalous

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Posted 21 September 2012 - 12:46 PM

Hi guys let me first run by my story.  I was diagnosed with CML 4/7/2011.  My WBC was 600,000 and was put on Geleevec on and off but later got off because my platelets keeps getting low.  Then a year later I was put on Tasigna.  From 400mg every 12 hours to 200mg every 12 hours then eventually recently getting off it.  The day after my 32nd birthday on 09/20 the doc told me I would need a bone marrow transplant.  After reading the blogs and articles about it, I'm kinda worried.  The onc sent a request to the City of Hope center.

I didn't have insurance and was covered by a county program but just a couple weeks ago I was approve for Medi-cal. I think the oncologists were just waiting for me to have some sort of coverage and when I told them I have Medi-cal, the main oncologist recommended BMT.  My platelets are at 37 and my WBC is at 5.7.  These counts seem to be stable even when I was taking 200 mg every 12 hours but my platelets keeps getting low.  Low platelets were their main concern.

I plan getting a second opinion but I don't know where to start, I guess on here is a start.  I just turned 32, I feel healthy, I'm at optimal BMI, I work out and have been lifting weights.  I'm taking nitric oxide as supplement for muscle building, not sure if that was interacting with anything since my platelets kept getting low even without it.  I have 5 siblings so matching my marrow may become easier.

Just needed some opinions or similar stories. My wife is at Navy boot camp right now and will graduate in November then go to her A-school.  I will be in the process of getting military medical benefits.  I don't want to worry her right now so I'm thinking of just waiting to get BMT or even just passing that up? I'm not sure right now.  I asked the oncologist if switching to Sprycel will help but he didn't recommend that, Bone Marrow Transplant was my only option.  I think I'll wait for my wife to finish boot camp and til I get military benefits to get a second opinion.  What are your opinions?  Thanks guys.  I really appreciate all the info on here.

- Ray



#2 jrsboo

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Posted 21 September 2012 - 01:47 PM

Run away from those docs!  Go to a CML specialist.  Someone who does CML all the damn time.  Your counts don't look like ANYTHING that needs a BMT.  The survival rate isn't good, AND you have to stay on drugs the rest of your life so you don't reject the transplant.

Go to a specialist.  NOW.

Caroline



#3 Ray99

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Posted 21 September 2012 - 02:25 PM

How are your PCR tests?  I would think that is the most important indicator of whether you are responding the the drug therapy. 

Low PLT is a side effect of the drug.  It could recover after a while or  a drug break would usually help.

Go to see a CML specialist.



#4 scuba

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Posted 21 September 2012 - 02:31 PM

Ray - What are your CML marker numbers?  FISH = ?  PCR = ?

Also - chances are very good you do not need a bone marrow transplant. A proven strategy for someone who is just starting out is to start and stop therapy to give your body time to adjust. This can be done over two years. Usually, you will adjust within six months or so ... but the key is to keep taking the TKI every time your counts (in this case Platelets) return to an acceptable level.

There is a great likelihood that you will stabilize while your  CML level keeps dropping. The measure above (Fish/PCR) are very important to know.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#5 chriskuo

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Posted 21 September 2012 - 02:52 PM

When were you diagnosed?  4/2012 is only 5 months ago.



#6 redonkalous

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Posted 21 September 2012 - 03:22 PM

Oops thanks for that, I edited.  Also thanks guys.  I will get a copy of my medical records there and get a second opinion once military benefits kicks it.  I get treated at Riverside County Medical Center Oncology (even convicts gets treated here) now after I didn't have any insurance to continue seeing the oncologists at UC San Diego Medical Center.  The last BCR/ABL result I scribbled down on my notepad was at 5.5% on 6/5/2012.  I didn't get a chance to write down latest results though beside my WBC and PLT.  I will get my medical records the beginning of next week and will tell them I will be getting a second opinion once military benefits kicks it, and to see exact results.

The oncologist I see is Dr. Mohammadbagher Ziari.  A quick google search reveals he's a Hematologist.  At the clinic I visit, I see the assistant oncologists more often though.  That place is a zoo but I'm very thankful for being seen there.  In my opinion having something is better than nothing.  I usually get my blood drawn there by students weekly, then at the end of the month I see the oncologist and they tell me the results and they adjust the medicine provided by Norvatis.

I will be looking for a CML specialist now.  I was hopeful for these TKI drugs but after my visits, it gave me second thoughts.  Despite going through side effects, I manage to make it through and felt fine being on them.  It was my platelet counts that they seem to focus on and had concerns.  After reading experiences here even before, I had a gut feeling I might not be getting the best advice there.  I'm thankful for the people there, and I'm thankful for the knowledge here.  Thanks guys.  I will update as soon as I get more info.



#7 Trey

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Posted 22 September 2012 - 08:12 PM

You will want to ask why the BMT is recommended.  There are two main possibilities:

1) You have failed the TKI drugs (all of them) -- This seems unlikely since you have not tried Sprycel; unless you have T315i mutation

2) You have what is called dangerous levels of "aplastic anemia" that do not respond to any attempts to remedy it, and the Onc believes your marrow has failed completely

There is a third that comes up occasionally:

3) The Onc believes you will never be able to afford life-long drug therapy and so a BMT is more "cost effective" (don't think it hasn't happened)

None of these appear (from what you have provided) to be the case.  But there may be more info than what you have provided.  So ask the Onc straight out: "Why do you believe I need a BMT?"



#8 tranier

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Posted 23 September 2012 - 07:53 PM

My son had transplant...I agree with Trey and would seek other expert opinions.  If you contact Dr Moshe Alpaca at University of Michigan..he or Dr Baxter would see you..They have expanded access to Containing...which would be something to try if T315i..Our journey has been continuously "rare'" but my advise is to be sure there are no other options out there!



#9 tranier

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Posted 23 September 2012 - 07:54 PM

sorry...my pad has auto correct..Dr Moshe Talpaz...



#10 tranier

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Posted 23 September 2012 - 07:55 PM

Ponatinib is the tki in expanded access..sorry...



#11 Tedsey

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Posted 24 September 2012 - 09:24 PM

Ray,

I just read an article somewhere that many times oncs will try to convince their younger patients to go through a BMT.   I think there is a train of thought out there that a SCT may provide a cure since drug therapy will be life-long, and especially long for someone who is young (wouldn't that be a dream to live to be 80 or 90 on a TKI--not quite sure what is so bad about that if it is possible).  When I was first diagnosed, my first onc, a hematologist/oncologist, who was a transplant doctor, was certain I would inevitably need a SCT and the sooner the better, (my WBC climbed up to 180,000 before an affirmative CML dx and I had a huge spleen).  My counts did not immediately go back to "normal".  As a matter of fact, it took more like 2.5 years for my counts to come anywhere near what looked like a CML "normal" (which means mostly "close to normal").

After 6 months, with a crazy onc who seemed to love to scare the heck outta me, with the help and support of this board, I changed doctors.  I found a hem/onc who was more knowledgeable and educable than the previous.  I was dx Nov. 2009.  After a bout of severe anemia, transfusions, extremely painful shots for low WBC and RBC, etc. so forth and so on, still, no one told me I would need a SCT.  I was lucky.  After a drug change, the anemia became much less severe.

I still have low PLT.  They bounce around from 20-70K.  My blood counts have finally gotten a little closer to normal.  I have retained a cytogenic response since Dec. 2010.  My PCR has been the same for the last 9 months.  I am on 100mg Sprycel (I have been on it for a little over 2 years).  Not a great response, but pretty acceptable.  It is my understanding that the idea is to ward off a SCT as long as possible, even for a person like me, who has suffered more complications than most.  I still hope to outlive this disease despite my mediocre response.

Don't hesitate to ask the onc to give you all the details.  And like Trey says, have him tell you the exact reason why he thinks you need a SCT.  Low PLT is not enough.  If you were dx in the chronic phase and your cytogenics and PCR are going down, I would think it is too soon to talk SCT, which is a very big deal (I don't always understand why some doctors throw it around like it is nothing--the survival statistics are still pretty grim).  Glad you are going to get a 2nd opinion.  If you were dx in chronic phase, there is much hope these drugs will work and you may avoid a SCT for what I wish will be the rest of your long life.

Good luck and good health,

Tedsey



#12 redonkalous

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Posted 27 September 2012 - 12:00 AM

Thanks guys for sharing your experiences and important info I needed.  I put in a request to get my medical copies, will take a week or more to get them.  I am on the search for a CML specialist in the state of California right now too.  I will be searching this forums and online and ask around.  I don't want to burn any bridges but I know I want to seek other options, it's what my gut is telling me.  I'm juggling all these while my spouse is in Navy training right now. Can't wait till November when she'll be done with that.  So far so good. I really appreciate everything I read here.  More update when it comes.






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