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MDS Myelodysplastic syndromes

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  #1  
Old Thu Sep 29, 2011, 04:35 AM
Jadon Jadon is offline
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lost my dad 3 weeks ago..

My dad was dignose with MDS last Oct 2010. Doctor told us that he was still in a rather early stage of MDS and if treated well he would still have many years with us.

He was in his Fifth cycle of Vidaza and was feeling weak.

2 mths ago in July, he suddenly caught a fever and started vomiting. He was then admited into the hospital. He was in there for a month. transfusing blood and platelet everyday. He kept on fighting but eventually lost the battle 3 weeks ago.

I'm writing this because i want to let people know don't believe what one doctor says and seeks a few more opinions and treatment decisions needs to be made wisely. Dont treat MDS lightly as Low white blood count means you are very prone to infection.

Its not even a year and i lost him.... i miss him everyday. he is a great man.

We were all there when he took his last breath. He was only 59 when i lost him... i wish i had more time with him.

To everyone.. dont give up.

" I'll keep on fighting " - Thats what my dad said till the last day.

Last edited by Jadon : Thu Sep 29, 2011 at 04:50 AM.
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  #2  
Old Thu Sep 29, 2011, 05:08 AM
Birgitta-A Birgitta-A is offline
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Location: Stockholm, Sweden
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Low WBCs

Dear Jadon,
How sad that you lost your dad!

It is true that low WBCs leading to infections always are a threat for us. All kind of infections will kill our WBCs and as our bone marrow often can't make enough new we get new infections. Infections and bleedings are very frequent death causes in MDS.
Warm regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, supportive therapy with Neupogen, Desferal and Exjade until June 2010. Since then Thalidomide + Prednisone + Neupogen. No txs since Sept 2010. Latest counts HGB 13.7, WBCs 4.2 and platelets 97.
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  #3  
Old Thu Sep 29, 2011, 12:52 PM
Neil Cuadra Neil Cuadra is offline
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Jadon,

It is extremely generous of you to share your advice with other patients and families after the loss you've had. I'm very sorry to hear that you lost your dad this way, and at too young an age. I'm glad he had his family around him. I'm sure that provided him with more comfort than anything the doctors could have done.

The doctor misspoke if he/she said that your dad would still have many years left, instead of saying that your dad could still have many years left. Families need to hear realistic information, and with MDS there are no guarantees. Doctors know this, of course, but don't always convey it to families as well as they should.

Please don't assume that your dad and your family chose the wrong treatment approach. I'm a fan of second opinions (my wife and I got second and third opinions before treatment) but another doctor might have recommended Vidaza as well. Vidaza treatment is risky but it's often the best option among the less than ideal choices that patients have. No matter what approach doctors take, many but not all MDS patients survive. Since your dad was up to the 5th cycle of Vidaza, it sounds like Vidaza was a reasonable choice. How sad that the infection set in.

Thank you so much for your message about the seriousness of MDS and the determination we all need. I hope you'll be sustained by the memories of your dad's years before this last one.
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  #4  
Old Thu Sep 29, 2011, 07:38 PM
bebop bebop is offline
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I am so sorry for your loss. As others have said don't think you could have done anything differently. I lost my Dad in May to mds/acute leukemia not infection. thank you for sharing with us. ((((hugs))))
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  #5  
Old Thu Sep 29, 2011, 08:59 PM
mausmish mausmish is offline
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I'm sorry about your loss. MDS is such a heartbreaking, variable, and unpredictable disease. It most likely would not have mattered if you had done anything differently. Vidaza turned out to be very beneficial for me. You just never know. Second guessing after the fact is no good.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #6  
Old Fri Sep 30, 2011, 06:56 PM
freedom99 freedom99 is offline
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Lost Your Dad

Hi Jadon;
Thankyou so much for sharing;
My wife has been given months or maybe weeks. Yet her vital signs are ok.
Our doctor always was realistic in the prognosis. It prepared us and every day that my wife is still stable is a bonus.
Our doctor has also set up home care, hospice and nurses etc. This has helped to share the burden.
To all those with MDS don't give up sharing since it helps us make the decisions.
My emotions are always near the surface and it's hard not to cry Jadon.
My prayers are with you and your family to safely journey through this time of grief and at the end of that journey to be able to celebrate the life of your dad with the memories and that those memories would become part of you and make you even stronger.
Again, my sincere condolences.
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Wife 63, June 2010 MDS (refr anemia - excess blasts type-2) PLTs 11,000/μl with giant forms 2 TF/wk. Hgb kept at 80g/l with 1TF per 2 weeks. 9% blasts 2 cytogenic abnormalities del(5)(q22q35) + inv(20)(p11.23q11.21) 3 cycles Vidaza no effect. June 2011 to AML WBC to 67 blasts and Aur rods in blood.
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  #7  
Old Wed Oct 5, 2011, 01:59 PM
sophia68 sophia68 is offline
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Hi Jadon,

So sorry your dad lost his battle and thank you for coming back to the forum to share your experience.

When my dad was admitted to the hospital back in July, we were told he was at his worst and to prepare for hospice, etc. As you can imagine, we got quite a scare, but my dad recovered. So, yes, the doctors aren't always right.

Regards,
Sophia
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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  #8  
Old Mon Nov 7, 2011, 06:53 AM
Sunshine123 Sunshine123 is offline
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Quote:
Originally Posted by Jadon View Post
My dad was dignose with MDS last Oct 2010. Doctor told us that he was still in a rather early stage of MDS and if treated well he would still have many years with us.

He was in his Fifth cycle of Vidaza and was feeling weak.

2 mths ago in July, he suddenly caught a fever and started vomiting. He was then admited into the hospital. He was in there for a month. transfusing blood and platelet everyday. He kept on fighting but eventually lost the battle 3 weeks ago.

I'm writing this because i want to let people know don't believe what one doctor says and seeks a few more opinions and treatment decisions needs to be made wisely. Dont treat MDS lightly as Low white blood count means you are very prone to infection.

Its not even a year and i lost him.... i miss him everyday. he is a great man.

We were all there when he took his last breath. He was only 59 when i lost him... i wish i had more time with him.

To everyone.. dont give up.

" I'll keep on fighting " - Thats what my dad said till the last day.
I am so sorry for your loss!!! My dad was diagnosed last year at 63. He is my best friend.
It has been a rough year for us and we just thought they were regulating him and all of a sudden his numbers go haywire and they have him on all these chemo pills and he feels like crap and he's talking about if he passes. This is killing me inside. Thanks for your advice about getting other opinions my dad is against it but I slowly keep suggesting. My thoughts and prayers r with your family.
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Dad age 63 diagnosed MD's refectory anemia 11/2010 treated with revlimid and hydroxurea with agrelide.
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