Please help me figure out MDS!

[smfallen]

Hi –

I’ve posted here once before a few months ago when my dad was first diagnosed. Several months later, I know a little bit more but still find the information about this disease to be very technical and difficult to understand. Here’s what I know about his disease; what I need (desperately) to know is how much danger he’s actually in. I live in a different state, and my dad is a doctor himself, but i think he’s minimizing his disease to protect us.

First, he’s a 70-year old man, with diabetes (although he controls his diabetes well with meds and diet). His MDS numbers, that I know are that his hemogliobin is about 10.5, his white blood cells are about 2,000 and his platelets are less than 30,000. It turns out he’s probably had MDS for a while and just didn’t know it until recently. I’d like to know what you all think his prognosis will be, what to expect, etc.

Thank you so much for any info you can provide. I feel totally overwhelmed about his diagnosis.

S. Allen

[Zoe]

Allen,

I am sorry you and your family are having to go through this. There are no hard and fast answers when it comes to MDS. Some info you don’t have which can affect outcome are blast count, MDS subtype, and chromosome involvement. Even then, it seems to be a crap shoot. Each person respoonds so differently to the disease and treatments.

I just try to take one day at a time. I know it is hard though. My hgb is starting what appears to be a slow decline in spite of the Aranesp. I am struggling to not worry that it will keep going down. I am working hard to stay focused just on today.

Zoe

[Kitty]

Allen,
Just like Zoe says everyone responds differently. You do need to now more details.
I have MDS Intermediate 1 trisomy 8 hmg <10 and I go for consultation to Stanford Medical Center.
You might want to join http://forums.marrowforums.org/
they have more information there.
Is your dad taking any drugs? Some work for some and not for others. The key is to keep well informed on a disease that is very hard to predict and understand.
Good luck to you.
Kitty

[jaxem]

s. allen
he is sharing his disease impact with you in that you know his count numbers. His numbers really aren’t that bad for someone with a blood disease. what type of mds does he have, i.e. RA, RARS, RAEB, etc.? could be that all he needs is a “watch & wait” program which a lot of forum members are undergoing. hopefully, being a doc, he’ll be monitoring himself. get back to us with more descriptive info about his disease.

[Neil]

It would be very difficult to arrive at a prognosis at this time.
His:
MDS classification
Blast count (if any)
Abnormal chromosomes
Cell counts over the next few months
Bone Marrow Biopsy results
will all be used in the determination of his prognosis. His counts look pretty good. The platelets bear watching, but if he does not have any symptoms of low platelets so much the better.
My platelets are generally in the 10,000 range. They dip to 6,000 or go up to 11,000, but long term hang in at 10,000. I am asymptomatic. On the other hand patients with platelets between 50,000 and 75,000 can have bruising and bleeding issues. It takes a bit of time to see how they will react.
Most of the material published prior to 2005 is pretty obsolete. The basics are still sound, but items such as length of survival are not valid any longer. There have been substantial advances in MDS reasearch and treatment over the las 2 plus years.
Would hope he has an associate that is a hemotologist or oncologist that can provide him/you with the current thinking on treatment and drug options.
His HGB at 10.5 is not that bad—unless he feels fatigue. As we age the threshold for fatigue becomes lower. If fatigue becomes an issue drugs such as Procrit or Aranesp may boost his red cell counts and get more oxygen to his body.
WBC at 2.0 is pretty good. In my case my doc focuses on my ANC. If it gets to 500 he would start me on a drug such as Neupogen.
There are no drugs that will grow platelets at this time. There ar several trials underway with Lonafarnib. It is probably too soon the have any difinitive results.
Most of us with a low risk diagnosis play the waiting game. I have been waiting and watching for over 10 years. Others with intermediate to hih risk DX are generally more aggressive with their treatment. Age gets much consideration. Some of the drugs can have some nasty side effects. There are times when the side effects may be worse than the disease.
Diabetes seems to be independent of MDS. At least it is in my situation. I can control my glucose with diet, exercise and meds. Not quite the same with MDS.
I found the more I learned about my class of MDS and my particular situation the easier it has been to deal with.
At the beginning it was pretty scary, and I pretty well kept thing to myself. As time passed and with more and more knowledge I opened up more with my family. We seldom talk about MDS unless my counts start moving lower of some other issue presents itself.
If you can get him to open up a bit and discuss his feelings it could help.

[faith’s daughter]

I must concur that this disease is unpredictable. My mom was diagnosed last Nov. 19 and is responding well to Revlimed. The doctor wasn’t sure it’d work for her because her bone marrow biopsy was inconclusive but he tried it anyway. I really don’t know any more now than I did then. I’m comfortable with blood draws now. She hasn’t needed a transfusion since May but I was getting comfortable with those too. She suffered a spinal cord injury this July but that’s a whole other ball of wax. As I see it we’ve just been put on a different rollercoaster ride within this rollercoaster ride known as MDS. If I could offer any advice, it’s just to be the best son you can be. I know it’s hard but do what you can to have MDS free days. Only let it into your life enough to treat it–don’t let it take over. Trust me I know it’s hard but it’s neccessary.

[Author]

Posts