Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #1  
Old Sat Dec 18, 2010, 01:02 PM
itzhak itzhak is offline
Member
 
Join Date: Dec 2010
Location: furlong pa
Posts: 2
Angry My Father

My father was 85 years old, he was diagnosed with AML in Oct. 2008, he started Vidaza and for 7 months he was ok and in remission. After the Vidaza stopped working we went to Jefferson Hospital where they gave him a new treatment, of Decagon (I am sure I misspelled it). With the new treatment his cancer was controlled and the Dr. Re diagnosed it as CLL.
All this time with the new treatment his CBC numbers where low and he got transfusion once every 2 weeks. His platelets where between 0-8, and the Dr. put him on Amicorp , unless there was a visible sign of bleeding, for the past 3 weeks there were no major visible signs of Bleeding but his platlets level were at 1,000, I kept asking the Dr. to infuse platelets and he refused. Well I guess the Dr. knows better, my father died Dec. 16th from blood in his brain. ( well it was still not a visible bleed), after his death, I called the Dr. who said “I am sorry”,
My father and I were very very close, we had done everything together, including our business, are we so disposable?...
Reply With Quote
  #2  
Old Sat Dec 18, 2010, 04:25 PM
cheri cheri is offline
Member
 
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Your Father

I am so sorry to hear this...I have often wrestled with to what degree those who we depend on for care are really treating us as individuals. Often I feel that my health is in the hands of some people who treat this line of work as just a job, when my LIFE depends on their actions and responses. I don't understand why the doctor would not transfuse platelets. In my experience, platelet transfusions usually occur below 20K, definitely under 10...mine have been as low as 2K and I still did not have any type of bleed. But they had in me the hospital immediately and gave me platelets asap.
Could your father's age been a factor in any of this? Or any other cause? It seems like he beat the odds with AML for 2 years, and then being rediagnosed as CLL....
Hopefully, someone can give you some answers, but all I can offer is my sincere sympathy for your loss. Take care....
__________________
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
Reply With Quote
  #3  
Old Sat Dec 18, 2010, 11:47 PM
lindy lindy is offline
Member
 
Join Date: Nov 2010
Posts: 48
Sorry about your father passing, my condolences.
I have lost my mother to AML too. I am close to her too so I understand how difficult it is for you now. It's still painful after all these years & now I'm diagnose with a blood disorder & worry what my son will need to go through emotionally. Life is somtimes not easy.

I hope your family & friends will give the strength to cope during this difficult period. Take care.
__________________
Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode.
Reply With Quote
  #4  
Old Sun Dec 19, 2010, 01:35 PM
Lisa V Lisa V is offline
Member
 
Join Date: Aug 2006
Location: Waimanalo, Hawaii
Posts: 401
I am so sorry about your father, Itzhak. What reason did his doctor give for refusing to give platelets? Perhaps it was only a matter of time, but to simply refuse a request like that without talking it over with the patient or family just seems like bad medicine to me. Only you can decide if you want to pursue this. It won't bring your father back, but we all deserve some sense of closure, and that's hard to acheive when there are unanswered questions.
__________________
-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
Reply With Quote
  #5  
Old Sun Dec 19, 2010, 09:23 PM
Lisa Z Lisa Z is offline
Member
 
Join Date: Nov 2008
Location: Ft. Washington, PA (Philadelphia area)
Posts: 111
Lisa V

Sorry for your loss.

Lisa Z
__________________
Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
Reply With Quote
  #6  
Old Mon Dec 20, 2010, 09:47 AM
itzhak itzhak is offline
Member
 
Join Date: Dec 2010
Location: furlong pa
Posts: 2
Hi to all

I am going to seek legal representation so I can take action against Jefferson Hospital In phila. Thank you for all your support, I feel that I have lost my right hand now.
Reply With Quote
  #7  
Old Tue Dec 21, 2010, 09:54 PM
launch launch is offline
Member
 
Join Date: Mar 2009
Posts: 193
Good Luck

I am so sorry to hear about your Father's passing and I hope that, through, legal representation, you receive peace in your heart. I pray that through your fight, you make it better for other families that are going through the same type situations. Sometimes I believe the medical facilities forget that it's our "First time going through things".... and we become statistics and voices without faces...

Again, I am sorry for your loss....

I pray for your strength in fighting the system and making it better for others!

Hugs, Cindy
__________________
Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
my father at First got TTP and now MDS? Is it possible? Rainbow Star MDS 7 Mon Jan 16, 2017 11:13 AM
Father with RCMD PolyG MDS 4 Wed Jan 21, 2015 03:33 PM
My father had decided not to do the clinical trail MaryS MDS 0 Tue Nov 19, 2013 09:03 PM
My father keeps coughing and lots of blood in mucus due to very low platete- please h estelle MDS 1 Sat Sep 22, 2012 06:55 PM
My Father agonzalez Tell Your Story 2 Tue May 1, 2012 06:53 PM


All times are GMT -4. The time now is 08:43 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org