Help....I need some opinions.....

[run4peach1]

My 78 year old father had a six year history of a high platelet count. MPD it's called. Treated successfully with hydrea. Three months ago, his hemotologist told him he needed to chage treatments to Vidaza. Thus, my introduction to MDS began.

Long story short, my father never had really big problems with his counts. His hemoglobin was low, 10-12, whites were always ok, and of course he had too MANY platelets. I wasn't really sure why the vidaza was started, but he got one cycle of that, which required a transfusion, and toward the end of the 21 days his platelet count exploded to 2.5 million. After getting that count down, the doctor decided to switch to Dacogen.

First round of dacogen went ok, counts ok, but again his platelets went thru the roof later on in the cycle. Now, remember he was off and on again with the hydrea.

As he took his second treatment of dacogen, he was also taking 7 platelet lowering pills a day (4 agrilyn and 3 hydrea) and just the other day his counts really crashed. He's still in the hospital trying to get his hemoglobin back up. The doc seems to blame such a crash on the stronger chemo dacogen plus the hydrea and the agrilyn. That certainly makes sense.

Not that I am questioning anything, but do you think maybe he started the dacogen and/or vidaza too soon? Like I said, my Dad felt pretty good until he got all this chemo in him, and now he is a shell of himself. I know that the dacogen and vidaza is to help him in the long run, but was it all too much too fast?

He has been in the hospital for 4 days now, and we're just praying his counts go up a bit (he also has a low grade fever) so he can go home.

I am thinking maybe we should suggest that he either try some of the RBC increasing drugs, like revilmid or some of the others, or try a reduced dosage of the chemo. I know he can't do anything right now. I'm thinking about getting a second opinion, but his doc does consult with others.

Anyone have any thoughts?

Thank you all, and May God Bless all of those effected by this disease.

[Birgitta-A]

Hi run4peach1,
Did your father have blast cells (immature cells) when they started Vidaza three months ago? Do you know anything about chromosome aberrations? What was his serumEPO before they started Vidaza – you could always try EPO treatment for low hemoglobin if the serumEPO is less than 500 before red blood cell transfusions.

Perhaps the best way to treat your father now is supportive therapy – red blood cell transfusions, Neupogen or similar drugs for white blood cells and platelet transfusions if he needs more platelets.

There are many drugs for MDS and we hardly know anything about the response of the individual patient except that Revlimid gives a good response in 75 % of the patients with the chromosome aberration 5q deletion.

Some members of this forum have tried the latest drugs for MDS called histone deacetylase inhibitors like Epival with very good results http://forums.marrowforums.org/showt...DAC+inhibitors

Hopefully your fathers counts will increase while his dr is pondering about treatment!
Kind regards
Birgitta-A

[run4peach1]

He must of had some blasts. I saw a CBC once, and it had blasts at 2%. Now, I didn't think a blood test would show this, I thought you needed a BMB, so maybe that wasn't accurate. He must have saw some blast cells in order to start the chemo.

I'm just a bit concerned that his counts (especially hemoglobins) aren't responding quicker. It's been only 4 days I guess, but the other day he was at 9.2 and yesterday it was at 8.3. I just wonder if all the chemo is still having an effect on his counts.

Up to a week or two ago he was walking a couple of miles a day. I am going to suggest some of these other drugs to the doc and see what he thinks. I don't want to be too forward, but I guess it's ok. I just pray he gets out of the hospital soon.

Thanks for your knowledge, it is quite remarkable. You're all in my prayers.

[Birgitta-A]

Hi run4peach1,
Thank you for your prayers - I need them because my hemoglobin is very slowly decreasing and I perhaps will have to start with Vidaza during the spring. I hoped that Promacta for low platelets should be available on license for MDS patients because my platelet count is low (last count 50) but Promacta is only given to patients with Immune Thrombocytopenic Purpura.

We can have blasts in periferal blood and that must be the reason for your fathers dr to start treatment with Vidaza.
http://www.cancer.gov/cancertopics/p...yelodysplastic

We are all different but probably Dacogen still can affect your fathers bone marrow - hope he is getting the best supportive care like red blood cell transfusions, Neupogen for white blood cells and platelet transfusion if he needs these treatments.
Kind regards
Birgitta-A

[run4peach1]

I got home from the hospital. The good news is WBC is 3.1 or 3.2; his platelets held stady at 172. Problem is his hemoglobin is down to 7.9. He does look better, shaved himself, washed up. etc.

I saw on his orders that they are going to try arsnep shots in a couple of days, I think one a week. That leads me to believe they are going to try that stuff to get his reds back up and maybe delay the chemo for a while.

How successful is aresnep?

Thanks for being a bit of a crutch for me, and keep up the fight. You're in my prayers.

[Birgitta-A]

Hi run4peach1,
Good that your fathers bone marrow seems to recover when it is left alone for some days !

They could have tried Aranesp before Vidaza and Dacogen - Aranesp is a very common supportive therapy and doesn´t have any adverse effects on the bone marrow.

Aranesp and the other EPO-drugs don´t work so good if the patients own kidneys make much serumEPO and try to stimulate the bone marrow. If the patients serumEPO is more than 500 Aranesp often doesn´t have any effect (my serumEPO was more than 800 and I never tried Aranesp).

Ask how much your fathes serumEPO was before the first transfusion?

Here is an abstract about an EPO-drug:
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

As you can read 67 % of the patients responded and more patients responded with a combination of EPO-drug and a drug like Neupogen for white blood cells.
Kind regards
Birgitta-A

[txplumber]

I am a 40 y/o male. I was diagnosed in May of this year. I have tried Aranesp injections and Revlimid, neither helped my situation. I just completed my 3rd round of chemo Decitabine, I have now gone almost 2 weeks since my last transfusion. A record. You can find out more on my website at www.IHaveMDS.com please take a moment to look it might help you or you maybe able to help someone else.