my husband has had two allo transplants in four years, he did not file for disability the first time, he did the second time and was approved within 3 weeks. Still there is a waiting period between diagnosis and when payments kick in.

Not always a good thing as far as prognosis is considered, hoping to beet the odds! Certain blood cancers are put on the fast track, not always where you want to be though.


You almost want a fight as they think you are healthier. Strange world we live in when, when the threat of dying soon qualifies you for SSDI or an early trial. Happy to be there in some ways, but again realize how the dire the situation is, feel free to PM me.

Wishing your family member well

Have to be thankful for small victories at this point which is that she can use her own marrow.

Did your husband use an attorney when he applied?

She's meeting with her primary oncologist now, as I type, and will be having a second opinion appointment next week so everyone concurs on treatment.

I'm trying to help her navigate the finances. Thank you so much for replying to my post. I probably will PM you a little later on this week / next week when I have a better handle on her situation.

I hope your husband is doing well. My relative's relapse was a bit of shock as it has been less than 2 years since she was declared cured after her first treatment.

as Tab mentioned below there is a waiting period of five months and then they pay in arrears. So it could be six months between the first check and the time she has been declared disabled. The filing date did not matter as much as the date when he was deemed eligible, so even though you might file a month or two after diagnosis, if they feel the diagnosis is proper, the waiting time begins at the earlier point.

Glad to here she can receive her own cells! Although I know not all auto transplants are easy and have the desired effect, there are several people whom we have met that had two autos and then an allo with success. In general, and not something to be undertaken lightly, I must say that the treatment CAN be less intense with an auto and allow a person to undergo another auto and/or an allo if needed. It really depends on what type of blood cancer and how aggressive the cancer is determined to be. Mind you they are still trying to fine tune a "better" path forward for all.

My husband is doing well and thank you for asking Six month bone marrow biopsy next week, Again! My how time flies

PM me if you think I can help answer any questions and wishing your relative the best with the second opinion. It is a long road and I am sure she is So Very Happy to have you help navigate the path ahead!

That you can get a stem-cell transplant which, when I was looking at it (ultimately was not a candidate) was going to have me out of commission for at least 6 months, or at least out of major public view for 3 months, and not have it qualify is beyond me.

automatic qualifier - you are automatically deemed disabled. For 12 or more months. However, say you get approved -- payments may not start for 5-6 months and I assume you're just supposed to exist on thin air? I'm of course grateful that it's an option at all, but sometimes the system is so damn unrealistic.

I hope you are well.

but they should be retroactive to the start of the claim.

Best to you

LLS.org and Be the Match.org are two of them, there are others.

Grants depend on donations received, so check back with them.

And for your PM, too. Excellent and comforting information. We await her second opinion this Tuesday and then I believe it's full sail ahead...

I talked to LLS on Friday; they mentioned their grants (and how they often fluctuated due to funds available) but hadn't heard of Be the Match.org - thanks very much.

we were fortunate to get a $500 grant from LLS for travel expenses, but that fund soon was gone. There are other organizations that might have some funds for your relative and I will send those to you.

Wishing you the best for tomorrow/today

biopsy go? Sending good vibes

we are still waiting on the chimerism and immune function results. I would expect the chimerism test would show he is all donor though, in this case his sister's cells.

Just googled chimerism, I know the preferred outcome of basic test results are 100% donor, which they had been after the first transplant. When my husband relapsed the mix had fallen from 100% donor to 60% donor and 40% his own cells, not something you want to happen, the initially undetected leukemia cells fought their way back.

But so far so good

How is your relative doing, is there a date for the transplant? If you can relieve some stress by managing some of the financial issues that is a great thing! Please let us know how things are going


http://www.seattlecca.org/Chimerism-Testing.cfm


Chimerism-Testing

Chimerism Testing/Engraftment Analysis


"A Chimera was a creature in Greek mythology usually represented as a composite of a lion, goat, and serpent. Contemporary use of the term “chimerism” in hematopoietic cell transplant derives from this idea of a “mixed” entity, referring to someone who has received a transplant of genetically different tissue. A test for chimerism after a hematopoietic stem cell transplant involves identifying the genetic profiles of the recipient and of the donor and then evaluating the extent of mixture in the recipient’s blood, bone marrow, or other tissue.

Chimerism testing (engraftment analysis) by DNA employs methodology commonly used in human identity testing and is accomplished by the analysis of genomic polymorphisms called short tandem repeat (STR) loci. These loci consist of a core DNA sequence that is repeated a variable number of times within a discrete genetic locus. The term STR, also referred to as microsatellites, relates to the number of base pairs of a tandemly repeated core DNA sequence which ranges from 2-8 base pairs in length. These loci exhibit alleles that may differ in length between individuals and are inherited as codominant Mendelian traits. STR loci have been identified throughout the human genome and some loci have more than 25 alleles..."

And hoping the chimerism and immune function results are also good! Let me know ...

Relative's butt being seriously kicked by chemo; preliminary schedule is one more chemo mid-month, then see how she does before scheduling the SCT. She's already very compromised from chemo even after this first round so I don't know how that will affect everything else.

Finished the disability application last week (submitted online) and need to follow up with papers, etc. Once that hurdle is over I'll start diving into the work-related leave, early retirement issues...

follow up visit yesterday and more biopsy results shows he is donor Now if it can stay that way!!!

Sorry that the chemo has had such a negative effect on your relative, unfortunately some negative effects surface when seeking a positive outcome. Please remind her to keep her eyes on the prize. Hope they are not too bad and I would encourage her to use whatever drugs she needs to lessen the effects of chemo and to get through this period. And when possible keep moving and also use whatever resources are available ... physical therapy, alternative therapies etc. This is the most difficult job anyone will ever have!

It is so nice of you to take on the paperwork task which is enormous, hopefully all will move forward with few bumps. Please let us know how the next chemo goes.

Best of luck