on Dacogen, battling HORRIBLE nausea

[txnmomma]

My father just finished his 2nd round of Dacogen.[5 days ago] It seems this 2nd round was worse than the first. He is taking Neupogen for 10 days. Does Neupogen give nausea??

It has given him HORRIBLE nausea. He was rx’ed Zofran and Phenergan. It’s hardly doing the job to control nausea. He has puked 2x today. I am concerned b/c I dont want him to get dehydrated.

Has anyone else used another drug to help with nausea and vomiting?? HELP!!

This has really take a toll on him. The nausea/vomiting is out of control. I need to call his dr on Monday for something else.

TIA
Wendy

[Russ P.]

Hi Wendy,
I have had quite a few rounds of dacogen and nausea has not been a problem. Before each Dacogen dose I get Anzemet and Decadron in the IV. On the last day of Dacogen Aloxi is sometimes used instead of Anzemet because it lasts longer. Some days during treatment I have them omit the Decadron because it keeps me awake at night. I keep Ativan at home to use if nausea is a problem but Kytril is also good.
I do not take Neupogen or Neulasta so it is possibly the cause of your Dad’s nausea.
Best wishes,
Russ

[txnmomma]

Hi Russ..

It never ocurred to me that Neupogen could be the culprit for nausea.

Maybe calling his dr and checking into more meds [different ones] to control nausea is something I need to do.

He is coming home from the hospital. He was admitted Sunday b/c his hemaglobin was 3.2, lowest it has ever been. He received 6 units of blood to get his numbers up.

Thanks for the advice.

Wendy

[Alice S]

Hi Wendy

Mom received Neupogen injections on two occassions recently, did not cause any nausea, though it made her platelet counts drop right down till 3, fortunately they rise slowly by themselves – she can’t have platelet tx at all.

Mom has been nauseas nad unable to eat for sometime, lost a lot of weight until she collapsed. Spent a month in hospital and is now eating all day! My theory is that she had yellow jaundice (my husband had the same 17 years ago, with all the same symptoms etc.)Her liver counts were way overboard. We thought she may have reached AML or CMML but suddenly on two occassions her blood counts went up about a week after tx, doctor can’t explain it as yet, will have to see how things develop from here.

Perhaps the nausea is neither the Medication or the MDS.

I know it’s difficult to separate MDS for other illnesses, but I think one has to look at the possibility.

[Harold P]

My husband was diagnosed in 2/08 with MDS RARS INT-1 secondary because of chemo treatments he had in 1998 for Non Hodgkin’s Lymphoma. He has multiple chromosome damage including monosomy 7. We have seen 2 oncologist/hematologists, 1 MDS specialist, & 2 transplant doctors. After talking with the MDS specialist my husband, Pete, decided to try Vidaza. We were aware of the fact that your counts would go down after the treatment. Sure enough it did. Pete ended up in the hospital & had to have 2 pints of blood. We discussed the Vidaza treatment with Pete’s hematologist/oncologist he sees off & on at the Mayo Clinic. This Dr. thought my husband should do the wait & watch since Pete had been feeling so good & his counts were pretty decent before the Vidaza treatment. After a lot of thought Pete decided to stop any further treatments of Vidaza at this time. He said maybe later on down the line he would start the treatments again. Ever since his counts have been improving.

6/3/08:
WBC 7.44, Neutrophils 5.15, RBC 4.59, HGB 13.8, Plt 260
7/8/08:
WBC 4.42, Neutrophils 4.94, RBC 4.42, HGB 14.6, Plt 204

So you can see that his counts are continuing to get better. He feels great. Pete’s doctor here in Des Moines & the transplant Dr. at the Univ of MN think that the one Vidaza treatment is why his counts are doing so well. We don’t know what to think. Pete hasn’t had a BMB since 1/28/08, so we don’t know if there has been any change in his chromosome damage. His Dr. doesn’t want to do a BMB yet. She wants to wait & watch. She is very happy with his counts.
We are hoping & praying that something miraculous has happened due to the Vidaza treatment. If he can do this well after only 1 treatment then hopefully this will mean that the Vidaza treatments can be spread out indefinitely. I don’t think any of the doctors know for sure. We are very thankful for this wonderful news & pray that it continues. We will keep you all posted.

We continue to pray for all MDS patients & their families.

Regards,
Pete & Sandy Peterson

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