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4 Replies Last post: Oct 24, 2009 1:12 PM by Tex  
my2boys99  
my2boys99
2 posts since
Oct 21, 2009
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Oct 21, 2009 7:31 PM

Dad has been diagnosed - Need help

I know this isn't about me, but I was hoping to find some answers here. My dad has a very complicated story.  I will try my best to keep it as short as possible.  First, he is 76 years old and back in March, he went in to have surgery for an AAA (abdominal aortic aneurysm).  Everything would have been fine, but he had a terrible reaction to the blood thinner, heparin, and came within inches of his life.  He stayed in the hospital for over 3 months trying to recover and build up enough strength to come home.  During that time, his blood counts did some super-crazy things.  This is normal for HIT (Heparin Induced Thrombocytopenia), which was caused from the heparin allergy.  However, after giving him so many platelets and seeing that his blood counts were not rising, a hematologist/oncologist got involved and they did a bone marrow biopsy.  This was back in March/early April.  I received a phone call from the Dr. telling me that my dad had mylodysplasia or "preleukemia" and based on my dad's "numbers", he might develop acute leukemia 2-3 years down the road but it was hard to predict.  I have to admit, his bedside manner was not too good.  I had just returned back to Michigan from visiting my dad in Arkansas and I was SO upset to hear this news.  I had lost my mother 15 years ago to multiple myeloma and now my dad was diagnosed with another blood cancer!  So, he tells me there is nothing that can be done because of his age, and that he may need an occasional blood transfusion.

 

That was the last we heard of him! Apparently, his regular family Dr. was supposed to take over.  Who knows, but after months of trying to take care of him from MI and taking trips down there only to find him so weak that he could hardly walk, and numerous other doctors involved, we now have another hematologist/oncologist appt. on Monday.

 

My dad's RBC was averaging around 6!  His kidney doctor has been giving him weekly shots of something (a vitamin I think) and that's boosted it to 8.5 this past week.  He has a live-in nurse 4 hours a day who is cooking meals for him so he's a bit stronger.

 

I know that he doesn't have "cancer" yet, but he may be getting it soon.  Has anyone had any experiences with mylodysplasia, especially with the elderly?  If so, is his RBC really bad?  Shouldn't he be receiving blood transfusions?  Is there really nothing that can be done?

 

Thanks,
Jane

Tex  
Tex
3,909 posts since
Apr 3, 2009
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1. Oct 22, 2009 1:14 PM in response to: my2boys99
Re: Dad has been diagnosed - Need help

Hi, welcome  to the sucky club.

 

Lot of things to respond to here.  First, I've got to say my mom had that AAA bypass when she was 62 and she almost bought the farm.  That your dad was able to make it through that at 76 says a lot of good things to me about his basic physical condition.  That's helpful.

 

Idon't know why the hem-onc would say there's nothing to do for your dad unless the surgery really messed him up inside.  There are treeatments that can help with MDS, even with the elderly in good general health.  That he wa left to his family doc doesn't make sense.  And the condition you've found him in would make me wonder if the family doc had ever been informed s/he was in charge?

 

From what you've said, I'd have some serious questions for the original hem-onc to consult.  I'd probably submit those questions through an attorney.

 

I hope all goes well or, at least, positively at the hem-onc's on Monday.  If the doc doesn't mention some meds, ask about Dacogen.  That's a med that was specifically developed for MDS, I think.  That's where it was initially used anyway.

 

Please let us know how your dad's doing.

 

Blessings

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Tex  
Tex
3,909 posts since
Apr 3, 2009
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2. Oct 22, 2009 1:45 PM in response to: my2boys99
Re: Dad has been diagnosed - Need help

I forgot to address the RBC question.  Are you possibly confusing RBC (red blood cells) with HGB (hemoglobin)?  The counts you report would be very high for RBC but pretty low for HGB.  HGB is a factor of the red cells but counts the stuff in the cells instead of the number of cells.

 

Blessings

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my2boys99  
my2boys99
2 posts since
Oct 21, 2009
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3. Oct 23, 2009 1:25 PM in response to: Tex
Re: Dad has been diagnosed - Need help

Yes, we have considered an attorney, but at this point, we need to sort it all out.  It's just a mess.  The original hem/onc. told me on the phone that my dad was too old and too sick to handle any kind of treatment, whether it be drugs or a bone marrow transplant.  I will indeed ask this new Dr. about that drug you mentioned.  The heparin reaction from the AAA surgery did leave him in a horrible state of health, and he was very close to dying.  He spent several weeks in the ICU barely hanging on.  But, he did make it through so I'm not sure why he can't have some sort of help now.

 

Yes, I might be confusing RBC with HGB.  All I know is my dad tells me that his "red blood count is ...whatever" so that's what I have to go by.  But you're right, it could very well be his hemoglobin.  Thank you for correcting me.  Anything I can learn about this is very helpful.  Is 8 really low for hemoglobin?  It was in the 6's, so it's a bit better now.

 

Thanks for your help.  If you don't mind me asking, why do you belong to this "sucky" club?

 

Jane

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Tex  
Tex
3,909 posts since
Apr 3, 2009
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4. Oct 24, 2009 1:12 PM in response to: my2boys99
Re: Dad has been diagnosed - Need help

I was diagnosed with Acute Myelogenous Leukemia (AML) back on Halloween 2003.  That's the leukemia that MDS turns into, if it goes that far, which isn't guaranteed at all.  I then had a Stem Cell Transplant, which is like a Bone Marrow Transplant.  So, that's how I joined.

 

Normal HGB for an adult male is around the 14-17 range.  I was sent to the hospital with a 5.5 with the warning I was risking a heart attack or stroke, so, yeah, 8 is pretty low and 6 is dangerous.  I'm guessing someone has at least been transfusing him as he's staying around 8.  That's where they usually transfuse.

 

Let us know what you learn from the new doc.  Could be your dad has improved enough to have some treatment.

 

Bkessings

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