New Member
Posted 02 June 2012 - 08:30 AM
Pat,
All my best to you ans Nate. That is hard news to hear indeed. Since Nate has reservations, I hope he will seek a second opinion from a CML expert. Not sure if he's seeing one already. Anyway, a second opinion can't hurt, and I'm sure there are many here who can point you to a good one.
Traci
Advanced Member
Posted 02 June 2012 - 05:21 PM
Trisomy 8 is not so unusual for CML patients taking TKI drugs. So it is not necessarily a bad indicator as long as it is in the non-leukemic cells. Some believe the TKI drugs may even cause it. Often it will go away over time.
What does his FISH and/or PCR show?
New Member
Posted 17 October 2012 - 09:53 PM
HELLO TREY AND EVERYONE ELSE AS WELL. IT HAS BEEN MONTHS SINCE I'VE BEEN ON HERE. SINCE THEN, NATHAN'S PLATELETS PLUNGED AND THEY TOOK HIM OFF THE TASIGNA. HE WAS OFF MOST OF THE SUMMER AND HIS PLATELETS SLOWLY ROSE. HE MET WITH A TRANSPLANT TEAM AND TURNED DOWN THE TRANSPLANT AT THAT TIME. THE DOCTOR SAID THEY WOULD REVISIT IT IN NOVEMBER. LATE AUGUST THEY DR PUT HIM BACK ON TASIGNA STARTING WITH 200 MG AND RAISING IT EVERY TWO WEES. HE HAS NOW BEEN ON 800 MGS FOR 2 WEEKS AND SO FAR HIS PLATELETS HAVE ACTUALLY GONE UP AND HIS WBC HAS STAYED STEADY AT NORMAL RANGES. HE HASN'T HAD A BMB FOR SEVERAL MONTHS BUT THE LAST IN DEPTH BLOOD TEST SHOWED THE PHL CHROMOSOME DOWN TO 25%. HIS MAIN CHANGE HAS BEEN THAT HIS BLOOD PRESSURE IS RUNNING HIGH. THE DR DOESN'T SEEM CONCERNED ABOUT THAT THOUGH. IS THAT A SIDE EFFECT OF TASIGNA? HIS DR (ONC) WAS HEARTBROKEN WHEN HE TURNED DOWN THE BMT IN MAY. THEY TOLD HIM HE HAS 1 TO 3 YEARS TO LIVE WITHOUT ONE. I AM HOPEFULLY GOING DOWN IN NOVEMBER TO GO TO HIS NEXT APPOINTMENT WITH THE TRANSPLANT TEAM. HE HAS BEEN THINKING ABOUT HAVING ONE BECAUSE HE HAS A SIGNIFICANT OTHER TO LIVE FOR NOW. WE (HIS FAMILY) HAVE TOLD HIM THAT WE SUPPORT WHATEVER HE DECIDES.
SO-O-O-O THAT'S THE UPDATE ON NATE. HOPE ALL OF YOU FOLKS ON HERE ARE DOING WELL AND HANGING IN THERE. THANKS FOR LISTENING
NATESMAMA, PAT
Advanced Member
Posted 17 October 2012 - 10:49 PM
I re-read all your posts just to make sure I didn't miss anything. Nate's journey has been an unusual one with a rocky start, odd symptoms, secondary health problems, and questions over his CML Phase. Theseare the main reasons why the Onc wants to do the transplant. Plus Nate has a hard time staying on a drug (very low platelets) long enough to respond well.
But Nate's FISH reached 25% at one point, so he CAN RESPOND to the drugs (sorry for shouting -- a little joke there). And his blood counts normalized, but went too low. So there is still enough reason to believe that if he can stay on a drug, that he might respond well enough longer term. So is a BMT necessary, given the risks? I do not know, and neither does anyone else. It is a decision, not an algorithm with lots of known numbers and facts.
Regarding the transplant issue, it is not an easy answer. Oncs like BMTs in unusual cases since they do not know what lies ahead for Nate. But if an Onc had this choice for his own child, I wonder what he would do. Just wondering out loud. But offering a transplant means nothing if you do not have a very good match already identified. Nate's siblings are not a match, so he would need to find an unrelated donor. To me, I could never say yes or no to a BMT unless I saw the matches that were offered. But the Onc seems to want a commitment first, and then a matching process. I would say "show me the matching options, then I will decide".
For me personally, if I were in Nate's situation, I would likely resist the BMT since there is adequate response to the drugs, and reasonable hope that he can remain on one of them, although it may require transfusions. The other issue is that Nate's overall health may not be strong enough right now for a BMT. He has been having heart related issues (unknown cause) and has possible damage from the 600K WBC that caused oxygen deprivation to his organs. So overall, the Onc may think that a BMT is needed, but Oncs think a BMT is just another treatment option. To me it is a last resort. That is how I look at it.
You can read more about BMTs here:
http://community.lls.org/docs/DOC-1375
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