Success with Vidaza

[grejulian]

This is my first post - tho have been reading the site for months.

My husband was diagnosed with MDS RAEB-INT2 on August 20th 2010 - began Vidaza treatment - Subcutaneous injections - 7 days on 21 days off for the first 4 months. His blasts were at 10 % - the plan was to go for a Stem Cell Transplant after 4 rounds. It was appearing that he was transfusion dependent until December. Hes not had a transfusion since 12/13 and no Aranesp or Procrit either. His blood counts continue to rise and are almost within normal levels. There had not been any donor identified - therefore the Vidaza treatment continued. He just finished 6th round of Vidaza and had a repeat BMB which showed 2% blasts. SUCCESS!!!!!!! The transplant will be put off - and we meet with the docs soon to really go over the results and the blood counts.

Just wanted to let all of those newly diagnosed that Vidaza seems to be working for us!!! God Bless all of you - Patients and caretakers alike - living with this disease is scary and sometimes conditions/blood counts change on a daily basis. Most people never know how much a 10th of a percentage point elates those dealing with anemia!

Good health and blessings to all!!!

[cheri]

Congrats! I am glad to hear about Vidaza working...did his numbers begin to rise after the 6th treatment or before? Are you continuing the Vidaza into round 7 and beyond, or stopping and waiting? Your info is greatly appreciated...

[grejulian]

Hi Cheri - Blood counts started to rise around round 5. But again that was the last transfusion as well as the last dose of Aranesp. Not sure of what really caused the drastic turnaround (but whose questioning right?) What might be of note - we have been juicing what I have read to be blood builders....and figured it couldnt hurt. Every day we have a big glass of the juice of a beet, kale, chard, blackberries, celery, carrot and apples. Again - we arent questioning, just going to continue. I do believe that the plan will be continue the Vidaza treatments. From what I understand, Vidaza keeps it from going into Leukemia. But we will get additional information when we meet again with the docs. Are you tolerating the Vidaza well? My husband is, although it isnt great - it isnt altogether too horrible either. Are you getting the subcutaneous injections or intravenous?

It is unfortunate that people of such young age are being diagnosed with this illness - my husband is only 47 and I see that you are awfully young as well. Good luck with the results of the BMB. We will include you in our prayers! Meanwhile, appreciate the good days and the tiny movement in blood count. We have learned that there are many miracles along the way!

[cheri]

Hi Grejulian
Thanks for the info.... got the injections for 7 days for the first 4 months, then they dropped it to 5 because nobody wants to work weekends.... I tolerate the Vidaza well, it's just all of the other stuff....Neupogen, Aranesp....I've been luck to have no real side effects from them. The first few months on Vidaza I ran crazy fevers and ended up in the hospital each month...lately, my temp has been below normal....then there is the nadir phase where my #'s are reallly low, and I need a bunch of transfusions...wondering if I'm neutropenic or not, waiting for things to level out. Get blood tested 2 x week and treatment as needed. Just when I'm feeling ok and things start heading up, time to start again....so it is really unnerving, as I have not seen any dramatic rise, even after 5 months. I'm waiting for the BMB to regroup....I'm taking a month off the Vidaza--doc said it wouldn't really matter one way or the other...hope he is right about that!

I have mixed emotions about juicing from much that I have read...that is a lot of sugar intake and cancer thrives on sugar.....even though it's natural. And can your body really utilize all of those vitamins, etc at once, or does it dump them? Plus, you are not getting the fiber...but if it's working for you, who am I to say? Where did you get your recipe?

I appreciate the prayers! Right back atcha...and you are so right about the miracles--I've had a few myself, and when time permits, I will post them in the "iving with illness" forum...take care and continued progress!

[grejulian]

Cheri - Yes - i do know and have read about cancer thriving on sugar - but in my mind that would apply more to processed sugars and processed foods as a whole. I dont really have a "recipe" perse but read "The Nutrition Almanac" and "Juicing Therapy" and specifically sections about anemia. We're not tough enough for a Macrobiotic diet - or becoming full fledged vegetarians. I will tell you though - prior to this - my husband ate TONS of red meat, and didnt eat fruits or vegetables - so whatever good stuff i can get into him - i will!!!! And since we began juicing he has had only one transfusion and that was nearly 2 months ago. I beleive you just have to listen to what your heart says is right on this crazy rollercoaster of MDS.

Blessings - and Hang in there !!

[Gokcen]

untill the 5th cycle videza my mother was doing well. her bmb blast result was % 6 in november. and she had her 5th cycle videza end of december2010. and after that her blood count started to decrease... in addition she never needed any transfusion since may 2010, that s good ..
( on may 2010 she had intensive chemothreapy bcs of AML )
her last BMB which was last friday, the result is % 24.. seems like she is back to AML ... i feel extremely frustrated now..
her 6th vidaza cycle started today.. she will have 200 mg every day.. total 1400 mg for a cycle..
she was having total 1000 mg before for a cycle..

I hope it works better ...

[Gokcen]

i guess vidaza not helping my mommy anymore...
She is having supportive treatment now, feels very weak and have bad flue..
Very low blood results.. Got some blood transfussions and started neupogen.
seems like her leukemia is back... ;-(
i feel exhausted& extremely sad...