blood problem

I spoke to the doctor and they are suspecting MDS, which is a side effect of chemo. Did anybody have that?

I read a bit about MDS back when I started treatments... since I knew it was a possible side effect of the chemo.  The University of Arkansas has done many studies on MDS.  Personally, I'd get a second opinion.  Statistically speaking, MDS as a side effect of chemo is rare.  It does happen, but it's rare.  From the cheap seats where I sit, I must say, I'm puzzeled at the doctors' "guesses" at this point.  Are you seeing general oncos?  If so, they're really not equipped to address transplant patients in general.  They don't administer transplants and they don't have much of an idea on how the chemo impacts the bone marrow and the different stages of development the bone marrow undertakes.  I'd get a second opinion perferrably from someone who treats stem cell transplant patients...like a MM specialist at a BMT clinic.

Here's a suggestion that can't hurt, go to the Huntsman Chat board and explain your situation and ask the question.  The MM specialist from the Huntsman provide the best answer they can without breaking the law.  And by the way, the specialist is named in almost all of the Arkansas studies on MDS...he's a PhD and knows MDS very well.

fightmyeloma.org

I hope it turns out neither of their guesses are true

Best of luck

Doug

On Oct 31, 2009 12:37 AM UTboy wrote:

I read a bit about MDS back when I started treatments... since I knew it was a possible side effect of the chemo.  The University of Arkansas has done many studies on MDS.  Personally, I'd get a second opinion.  Statistically speaking, MDS as a side effect of chemo is rare.  It does happen, but it's rare.  From the cheap seats where I sit, I must say, I'm puzzeled at the doctors' "guesses" at this point.  Are you seeing general oncos?  If so, they're really not equipped to address transplant patients in general.  They don't administer transplants and they don't have much of an idea on how the chemo impacts the bone marrow and the different stages of development the bone marrow undertakes.  I'd get a second opinion perferrably from someone who treats stem cell transplant patients...like a MM specialist at a BMT clinic.

Here's a suggestion that can't hurt, go to the Huntsman Chat board and explain your situation and ask the question.  The MM specialist from the Huntsman provide the best answer they can without breaking the law.  And by the way, the specialist is named in almost all of the Arkansas studies on MDS...he's a PhD and knows MDS very well.

fightmyeloma.org "" target="_blank" rel="nofollow">http://fightmyeloma.org " target="_blank" rel="nofollow">fightmyeloma.org

I hope it turns out neither of their guesses are true

Best of luck

Doug

Doug,

Thank you for your answer. My dad is seeing an MM specialist. He's been suspecting MDS for a few months and sent my dad to a blood/leukemia specialist at Cornell (we're in NYC) - back then the Dr didnt think it was MDS. Now is a different story.

I will check out the forum you suggested.

Julie

Hi Julie,

Just wanted to say welcome to the group, and try not to worry too much until you know something more definitive. My dad has MM also, stage III, with bone damage... but is doing much better now and has been 'stable' for some time. He was diagnosed two years ago. He's 79.

I see you are in NY... (woo - hoooo) - so are we. Does your dad go for treatment in Manhattan? Just wondering. Mine does not... he lives in Queens so goes to a local oncologist there, about 10 minutes from home. But we do also go to the VA hospital once a month in the city, to see a doctor there and get his Thalidimode.

Please keep us updated & good luck.

Deb

Julie - I've been following your thread on the Huntsman board as well.  I sure hope you and your family can get the answers you need.  It sounds like a really tough challenge ahead.

I wish you all the best and hope the docs can work their magic for your father

Doug

On Nov 05, 2009 6:28 PM UTboy wrote:

Julie - I've been following your thread on the Huntsman board as well.  I sure hope you and your family can get the answers you need.  It sounds like a really tough challenge ahead.

I wish you all the best and hope the docs can work their magic for your father

Doug

Thank you, Doug. Right now we're taking it day to day.  We were told he needs a transplant but it takes 2-4 months to find a donor. And right now dad is in the hospital with a fever that is not subsiding.

Julie

I'm sorry to hear that Julie.  I'll tell ya, the fever battle just never seems to end.  I've been fighting fevers off and on the past two months...one of unknown cause; the other, H1N1.  With a suppressed immune system, it's just one battle after another. 

I sure hope all goes well.  I know this must be difficult..especially after enduring a tandem transplant not so long ago.  Your family has been through a lot.

Peace to you Julie

Doug

On Nov 09, 2009 2:03 AM UTboy wrote:

I'm sorry to hear that Julie.  I'll tell ya, the fever battle just never seems to end.  I've been fighting fevers off and on the past two months...one of unknown cause; the other, H1N1.  With a suppressed immune system, it's just one battle after another. 

I sure hope all goes well.  I know this must be difficult..especially after enduring a tandem transplant not so long ago.  Your family has been through a lot.

Peace to you Julie

Doug

Thank you for your support, Doug. Dad's wbc counts are extremely low, and that makes it harder to fight off the infection. He has a fever on and off.  He's being given meds to raise the white blood cells but so far it's not working.  I am just wondering how long before it works?

Julie

Keep in mind Julie, colony producing drugs like neulasta and neupogen can cause fever themselves.  Many times patient end up in the hosptial fighting a fever of unknown origian shortly after getting those drugs.  If I remember right, there's a about a 6 day window before the white cells go bonkers.  I typically get bad lower back pain with neulasta.  My guess is your dad is getting neupogen. 

Have they ID'd the infection?  Or, are they assuming infection because of the fever? 

Doug