BMT vs Vidaza

[Ensnee]

Hi, I need some feedback. My husband was diagnosed with CMML last June. He did very well on Hydroxyurea until the last few weeks. His white
cell count is rising fast, although as of last week his platelets and red cells were still okay,
(they have been low in the past, but recovered.)
We are now looking into more aggressive treatment. While Vidaza is not currently available in Canada, we could have it brought into the country as an emergency. He is being referred to a BMT specialist here in Toronto, but I have also contacted M.D. Anderson to find out more about Vidaza, & to see if it would be an
appropriate medicine for him. Can anyone give me their thoughts on this?

many thanks,
Esme

[doreen]

I am very interested in everyones feedback on this. I am having a transplant done and have never been on any drugs nor had any tx done although I am very close to having to have platelets tranfused. I keep second guessing myself whether or not I should be doing something else rather the transplant. I am 52 years old and was diagnosed last year with MDS. I am scheduled April 11 and I feel I still may back out (mostly because of the fear I have). I have not been given any other options for 2 hospitals.

[eve]

if you are weighing the benefits of vidaza vs a bmt you are comparing apples and oranges

as far as i know a bmt is the only possible way for a cure –

vidaza,on the patients that have success with it, helps keep the disease in check – i don’t believe it is a cure

but i am definitely not an expert

the best possible information would be obtained from a doctor with experience in treating mds patients

eve

[Harold]

I was diagnosed with CMML in Oct., 2003. I had high WBCs and low platelets. RBC/HCT/HGB have remained normal. I tried Arsenic and another investigational drug without much success. I used Hydroxyurea for several months and it lowered WBC count. I started Vidaza in Oct., 2004 and I am currently on my 7th cycle. WBC count has stablized at the high end of normal, RBC/HCT/HGB remain normal, and platelet count has improved marginally and has stablized at 50K. Bone marrow blasts have been as high as 18-20% but have come done to about 7-8% while on Vidaza. Side effects from Vidaza have been minimal. Plan is to continue as long as results are good.

[shirlsgirl]

Hi Esme,

We are neighbours (I’m from Hamilton). Welcome aboard…sorry you had to find this site. My mom also has CMML, she was diagnosed Oct/Nov. 2004. Does your husband see a hematologist in Burlington? My mom sees Dr Chan out of St. Joes and Dr. Leber out of McMaster. Her counts are similar to Harold’s…wbc’s high normal,rbc’s and hgb normal, platelets holding steady around the 160,000’s.

I’m sorry I don’t have any first hand knowledge on Vidaza. My mom will be put on Gleevec as soon as she is off Prednisone. Hopefully in another couple of weeks. She has a particular chromosome abnormality, similar to CML, so they are hoping that Gleevec will be effective for her.

Interested to hear how his appointment goes in Toronto. Will he be going to Princess Margaret hospital? I know someone who also has CMML and will be having a BMT there in April. (It’s pretty nerve-racking…hope everything goes smoothly for her)

Please keep us posted… hope MD Anderson gives you some good feedback.

take care,Jody

[KP2112]

Hi Ensnee,

I am another neigbour, from Mississauga. It is very difficult initially to know what to ask for and from whom. Compounding that is that Canada does not have all the drugs that are available in the U.S. and elsewhere. My father is going to see his specialist this week. I am going to see exactly what can be prescribed in Canada. I will let you know about the options I find out about.

Kind Regards,
Karen P.

[Ensnee]

Thanks, everyone, for your responses. Also, sorry you are all dealing with this horrible disease either as a patient or a family member.

Jody, Hans has an appt w/ Dr. Walker at Mac.
His hematologist is Dr. McPhaden in Oakville. (We live in Burlington.)
I spoke to him today, & he is going to get Hans into PMH as well. Also, we’ve heard back from M.D. Anderson, and now we’ve sent in a patient self-referral, and I have to find out if OHIP will pay for a consult there. Also, I know and am
in touch with the lady you speak of who is going to PMH — Edith, right?

And Karen, I grew up in Mississauga! Was your dad
only just diagnosed? It’s good that you are going with him to his appt. I find that Hans forgets a lot of the details discussed, probably because his mind is spinning. I’m the one who is doing any research — he just can’t handle reading about it because the first time he did,
he read about the poor life expectancy, & it really upset him.

I’ll keep you all updated.

Try to stay well (easier said than done!)

[KP2112]

Ensnee,

Oh my goodness! My dad’s Dr. is Dr. McPhaden from Oakville. That is where my dad gets his transfusions. I have to say, McPhaden takes more of a laid back attitude so our family decided to go see a specialist at the PMH. McPhaden wasn’t suggesting anything except for Epogen and when it didn’t work, he told us it was too expensive to try again (or in combination with something else). I was really on my last nerve. He didn’t provide any options. I am so glad you are going to the PMH. I will keep in touch to see how things are going.

I have seen many life expectancy charts. I would tell Hans not to get distraught. As I have learned through reading and this website, life expectancy information is always changing, especially when treatment is involved.

Have a nice holiday weekend. Will be in touch.

Kind Regards,
Karen P.

[Jack_dup1]

I was diagnosed with CMML 4/03. My WBC and Platelets were iniially low, RBC normal. My platelets are +100,000. WBC 26.6, Mono’s 4200. I will be at MD Anderson 3 days next week for evaluation, Will let you know how it goes. Wish me luck, this is always the nervous time.
Jack

[Ensnee]

Hi Jack — I do wish you every bit of luck in your trip to M.D. Anderson. It will be very interesting, I’m sure, to hear how it goes.

Travel safe — Esme

[mommachkate]

Hi Esme, My husband was dx oct/2003.He tried arsenic treatment, proctrit, hydrea, and vidaza. Finaly he had a full cemo in the Moffitt cancer center in Tampa. No result. I wish he could have the choise to get a BMT. Just like Eve said it is the only cure. Best wishes for your husband recovery. Kate

Hi Jack, Wishing you all the luck and result for your visit at Md Anderson. Keep us informed Kate

[shirlsgirl]

Good Luck next week Jack!! Will be thinking of you!

Jody

[Jimbob]

Jack,
More than just wishing you luck, I pray that God will again show he has the ultimate power over death (and disease that normally leads to death) and you will be another example.
On Wednesday, 3/30/05, I will celebrate my first anniversary of SCT. I definitely feel that is the way that God had lead me and had given me the choice to accept it.
Jim

[Author]

Posts