Vidaza 3rd round-any suggestions

[donna j.]

Hi All,

After 3 weekly postponements of my 3rd round of vidaza, due to low numbers: white 1.7; red 8.7 and platelets between 7-13, and then getting pneumonia, I am ready to start again on Monday. I will have shots Mon, Tues, Wed, Then following Monday, Tues, Wed, Thurs followed by a shot of Neulasta. My transplant will not take place in December, but more likely in January, if all matches and donor contines to offer her marrow/stem cells. Its an 8:8 match, but my team assures me this is fine.

My question is: is there anything I can do to boost my numbers and anything I can do to make my Vidaza treatments, receptive and not so reactionary to my body. (I did read a suggestion for Primrose Oil capsules, to open and put on inflamations) Marlene was that you?. Foods?, alternative treatments?

I have had a couple of melt downs in the last few weeks, and am refocusing on mindfulness, focusing on this day only, and observing my breathing. I have also started to wear hand weights for a few times a day to build up some of the muscle, I am losing. When I get my breath back, I hope to go for a walk and get on the recombent(sp) bike.

Thanks,

Donna j.

[Birgitta-A]

Hi Donna,
We have only the usual recommendations for low counts: avoid infections (very important), eat well, exercise (outdoors if possible) and sleep well. Your immune system is repaired when you sleep. Primrose oil can decrease skin reactions. Many CAM drugs like garlic, green tea and Omega 3 increase bleeding risk (so you don't get arteriosclerosis) and should be avoided.

You know when your Neutrophils are 0.5 or lower your own bacteria, virus and so on can give infections. Do they have to wait so long before you get Neulasta?
Kind regards
Birgitta-A

[donna j.]

Thank you Birgitta for responding,

Actually from reading Marrowforums, I suggested if I shouldn't get something for the white cell count. Since the infection and pneumonia, my transplant dr. just told me on Friday that within 24 hrs following my last Vidaza shot, I would get the shot.

Any problems getting it during the Vidaza treatment? Is that why they want to wait?

Donna

[Birgitta-A]

Hi Donna,
As far as I understand they mostly delay the treatment and give a lower dose as prescribed at the Vidaza home page. I can only find one abstract where the author mentions growth factors like Neupogen or Neulasta: http://www.springerlink.com/content/6450j44112567073/

As you probably know the hematological adverse effects can decrease after the third cycle when hopefully the positive effect of the treatment kicks in.
Kind regards
Birgitta-A

[donna j.]

Thank you Birgitta for your kindness and wealth of knowledge and resource.

Donna

[Mary4Mike]

I am asking this totally out of curiosity and not wanting to come across snide in any way: If you are having a transplant in the near future, why are you continuing with Vidaza? Don't they want your counts to be recovered as much as possible prior to transplant? Are they thinking that maybe the Vidaza will kick in and you won't need a transplant? Your reaction to Vidaza brings back the memories of how Dacogen effected my husband. Complete knockdown of counts and hospitalizations with pneumonia 3 times. He was never able to begin his cycles on time because of these problems. He had a good experience with Vidaza and also with transplant. I pray that you will also have a good outcome.

[mausmish]

I can't guess Donna's doctor's reasoning but my doctors wanted me on Vidaza until immediately before transplant to keep me in remission (blasts < 5% and no chromosome abnormalities).

The conditioning chemo is going to knock the counts down to zero anyway once transplant time comes. But they need to be kept high enough to stay reasonably well beforehand, i.e., no fevers, bleeds, or infections.

[donna j.]

Mary and Karen

I welcome all comments and thoughts, I feel as I am going through a maze blindfolded. My dr. wanted my blasts less than 5% even though they are less than 10%. She also hoped the blood counts would increase as they are always quite low. I think she also had concerns regarding the disease progressing, as it came on quite quickly. My last BMB on 11/1/11 showed no progressession and slight decrease in blasts. She is no longer talking about a 4th cycle, as i freaked feeling I just will become less and less healthy prior to the transplant. Also the doner nurse's asst. informed me in October, that it was a poor time to try and get a doner during the holiday season starting with Rash a sha nah through to New Years. (Already that team has been in and out on vacations). I'm a little nervous with that area as they were given only 1 match, after requesting 2, when I inquired why not ask again, they cited expense.( Dana Farber did a preliminary check and found 1:499)
So I have one 8:8 match, which I know cannot be reserved, and she is 22 yrs old. I worry that she might bail and there is no back up. But I guess it may not take long to get another?

Also I know my insurance in involved, but final approval has not been made, pending all medical tests. Unfortunately too, approvals are till 12/31/11, I hope that is not a problem.

Thank you all for your comments and suggestions and quiery's I welcome them!

Donna

[Birgitta-A]

Hi Donna,
Here is a study about Vidaza (azacitidine) before SCT. As you can see Vidaza treatment appears to be a valid therapeutic approach, but mainly in patients receiving Vidaza alone since allo-SCT in patients who required both Vidaza and chemotherapy had less satisfactory outcomes, possibly reflecting additional toxicity and/or more resistant disease.

The Vidaza alone patients were older (p =.025), had more often Int-2 and high IPSS (p=.013), poor cytogenetic IPSS (p<.001) and received more often NMA conditioning (p =.005) from an unrelated donor (p=.007) but they still did better.
http://ash.confex.com/ash/2011/webpr...aper36900.html

Many of the patients in the study had a more advanced disease than you have.
Kind regards
Birgitta-A

[donna j.]

Thank you Birgitta,

I will review the study and may have some questions.

I just received a call from my insurance and the transplant has been approved for 12 months. (one less worry).

I see I need to figure out how to turn on my spell check as "doner" will never do!

again my thanks,

Donna

[Birgitta-A]

Hi Donna,
Very good with OK from the insurance company !
Kind regards
Birgitta-A