dacogen treatment - not recovering

[anne&dean]

Hi ,

Just wanted to update you on my husbands treatments. I am upset so writing makes me feel better. He had his first treatment of dacogen on November 11, 2008. on the 24th we went back to doctor and they gave him 2 more units of blood and paletes. He was suppose to start back on chemo next week, but after todays visit with doctor his counts are lower his white blood cells are down to .7 they were .9 last week, his platelets are 2 they were 5 last week, his hemoglin is 8.0 they were 8.1 last week, the only thing that went up was his red blood cells which are 2.64, last week they were 2.60

They are giving him 2 more units of blood today, then he goes back next Wednesday for more blood and then hopefully next Thursday they will put in a port, as his veins are so bad.

On the positive side of things we had a great thanksgiving, he eat the best he has in months, and seem to feel good. He even went for a short walk.

Friday night he started feeling worse, when this happens he has problems sleeping, even though he takes a sleeping pill. It is like he just can't get relaxed to go to sleep.

Hopefully they will be able to start the dacogen on the 15th.

Anyone that has had the dacogen treatment and the experience has been like this please let me know. I did not go with him today , my step-daughter did, as we have two homes one where his taking treatment and the other 3 1/2 hours away. I have a 12 year grandson that has cp that I take care of and it is hard to get someone to watch him the week I am gone for the treatment. I leave every Friday morning and go to our house in Durham and then come back on Sunday, as my step-son comes in Sunday night to run the business and is there with him during the week.

So all this said I was not able to ask the doctor if this was normal, and neither my husband or step-daughter ask him.

Any info from anyone would be deeply appreciated.

anne

[Birgitta-A]

Hi Anne,
Dacogen should give hematological improvement in 73 % of the patients. You know often it takes several cycles before Dacogen or Vidaza have a positive effect. The adverse reactions come at once and low red blood cells, white blood cells and platelets are common (Vidaza has the same adverse effects).

http://www.pcpoh.bham.ac.uk/publiche...Decitabine.pdf

As far as I understand many patients need packed red blood cell and platelet transfusions when they start treatment. When the white blood cells are low the patients should have Neupogen or similar treatment.

Look out for infections!
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal 4 days with transfusions, Neupogen 2 injections/week, asymptomatic

[anne&dean]

Hi All,

As I stated the other day my husbands counts were very low and he was receiveing platlets again plus blood. I decided to read about platlets, as I had not got that far in my research.

My husband was taking 325 mg. of aspirin aday which was on his medical information. From what I was reading he did not need to be taking this due to the effects it has on platlets. So I called his doctor, guess who was right, me! He told me to have him discontunine his aspirin till futher notice, that someway it had got by him.

Please make sure that when going to doctor he realizes what meds you are on! We give my husbands doctor a list every time, but sometimes they are so busy that they don't really see them.

So if you have low platlets and are taking aspirin, please ask your doctor about it!

anne

[Birgitta-A]

Hi Anne,
Here is a list from patients with a special kind of disease with low platelets called Immune Thrombocytopenic Purpura. There are many drugs that can give low platelets .

Then we are told to eat many kinds of food that should be good for us because that food increases bleeding tendency - we can avoid arteriosclerosis. Patients with low platelets don´t want increased bleeding tendency and have to avoid everything with for example garlic/onions.

http://www.pdsa.org/itp-information/itp-warnings.html
Kind regards
Birgitta-A

[LindaD]

I was diagnosed with MDS in 9/2006 here at Wake-Forest. Elected not to have induction. Did very well with Dacogen and an occasional aranesep and neupogen shot. Then last summer, everything fell and hasn't really bounced back. Have had 3 bone marrows - AML about 4 mos. after initiail dx; with 30% platelets; then 3nd one in August 2008, down to 9% and but counts falling. New specialis doesn't use neupogen due to theory it latches on to blasts as it is suppose to do to 'good' cells and can promote blast growth.. Now transfusion & plat;et dependent and very depressed. Have avoided infections, (despite 0.-180ANC), but depressed with low counts. Have dr. appt. and another week of dacogen. Anyone had this type of 'run'?
LDH

[anne&dean]

My husband was just dig. in October 2008. He goes to Duke which is in your vinicity, he has a great hemotolgist, Dr. Castro. I may be misinformed but I think he specialize in mds.

My husband was really doing bad, in Nov., Dec., Jan. 2009, but after his 3rd treatment with dacogen his counts started going up! He just finished his 5th treatment in March, before the treatment all his counts were up except his white blood cell. The doctor seemed very surprised that this had happen. At this time there will be one more treatment next month which will make 6 of them, if counts are still doing good, then we will go from there! He has been doing the dacogen one week on 3 weeks off.

So since this is our first time with the dacogen not sure what the end results will be.

Will keep you in our prayers, lol luv.

anne

[LindaD]

Anne, I was successful with Dacogen after about 10 rounds. Hang in there. In Nov. 2008, a blast increase so am trying it again every 4-6 weeks, not doing much so far. It is a roller coaster, period. A lot depends on age, I'm 72 but was in 'perfect' health up to 2006. No real profiles.

Infection is a danger so read up on that too. a pain in the neck but worthwhile when those white counts are low. Take care of yourself too. it can be soooo depressing to all.

Prayers to all.
Linda