vidaza for the elderly

[Annettec]

My mother was diagnosed in May 2014 after going for her annual blood work due to having had cancer 25 yrs ago. She was and is still not feeling any effects from her aggressive form of MDS. At the time of diagnosis, her oncologist told us that unless she started treatments right away, her MDS would likely turn into AML very quickly. Her blasts were 13% at the time of her diagnosis. ( she was told that there was a slight improvement when they conducted another BMB in Nov 2014). She has just completed her 10th Vidaza treatment and except for a week spent in hospital in January from a fever, she has really tolerated her treatments well and continues to enjoy life....albeit, she sometimes gets fed up with the time she has to spend at hospital for treatments, tests, doc appointments, etc.

Vidaza has definitely helped her. Her blood counts have all gone up and except for one transfusion in the 1st month of diagnosis, she has been transfusion free. Since her fever in January, her last blood work did show a slight decrease. I am hoping it's related to her fever (infection) but down deep, I am concerned that Vidaza is starting to be less effective.

I have read just about everything I can get my hands on regarding MDS , AML and Vidaza. It's obvious that older people do not have the same prognosis as they are not candidates for a BMT or aggressive chemo. Here's my question, does anyone out there in this vast MDS community know of anyone in their 70s who has lived more than 3 years on Vidaza? I should mention that her oncologist does not appear to be very optimistic... At least that's what we are sensing...he's not the easiest of communicators and since my mother prefers to know less, we cannot get much out of him while she is with us. I have her POA and although she would like me to be her advocate, her doctor will not meet or speak to me alone. His receptionist told me that he told us everything he can tell us. Very frustrating when we have questions that I am sure would shed some light, but he simply will not give us any time. I often wonder how doctors would feel in our positions? A bit goes a long way.... We often just need a professional opinion to make sense of all the info we are taking in.

I love my mother dearly.... And I am trying to anticipate her needs so that we can support her as much as possible. She is such a good person, she deserves that and more.....

All the best to everyone dealing with this horrible disease.....
Annette

[PaulS]

Hi Annette,

I'm sorry about your mother. How old is she? Just because she is in her 70's does not necessarily rule out transplantation - especially a "mini transplant" where not all of the patients marrow is destroyed - this in't a scholarly link, but you get the idea:
http://www.fredhutch.org/en/news/rel...ransplant.html

Where is your mother being treated? - is the doctor a specialist in MDS? Is the hospital a treatment center with expertise in MDS? Here is a link to what the MDS Foundation considers "Centers of Excellence."
http://www.mds-foundation.org/mds-ce...of-excellence/

Regardless of the qualifications of your doctor, I'm concerned he seems a bit arrogant and does not answer all of your questions . There really is no excuse for that and there are many doctors who are in the top of their field who will take the time to make sure you understand everything. MDS will bring you into frequent contact with your hematologist, nursing staff, clinics, hospitals etc - you and your mother should feel comfortable with all of those people and places. I suggest you try and find an MDS specialist and get a second opinion. If you are not near one of the major MDS centers it may be worth a bit of a trip to get an opinion on possible treatment plans and to fully understand what you mothers options are.

Best of luck. Paul

[bailie]

Not excusing the doctor's attitude, but it is very difficult for doctors to suggest an accurate presentation of how MDS will develop. Everyone seems to have their own adventure. It is one of the first things I noticed in my first appointments following diagnosis. But, the doctors need to be as helpful as possible because it is very difficult for the patient and family. My doctors were very straight forward and I appreciated that. My only chance was a stem cell transplant.

[Annettec]

Hi Paul,
Tks so much for your response. My mother is 78 yrs old and until this, she was a very active person...taught dance, volunteered at church as well as in a nursing home , played cards 3 times a week and she is also an avid hockey fan!

Although she is not as active, she still manages to do more than most people her age. I keep hoping that her Vidaza treatment will keep her relatively healthy for a few yrs. Studies are not very encouraging...nor is her doctor.

I am going to take your advice and check his credentials. He is listed as an oncologist, but not necessarily sure about any further designation as a specialist for blood disorders. He does appear quite young.....
Worth a try....

I swear doctors need a bit of their own medicine at times... Not that I would wish anyone this horrible disease. I know they cannot become personally involved in their cases, but they should at the very least be a bit more understanding that their patients are not just "files". They're someone's mother, father, sister, child, etc....

Hope all is well with you.....if you have a moment, I would love to hear about your life.

Tks again, very comforting to know that I am being heard!

Best,
Annette

[Annettec]

Tks Ballie. I do appreciate that they cannot foresee the future, however, I wasn't even able to get answers on basics such as her blasts, etc. I had to get info from nurses at the oncology center....

My mother made it very clear from the onset that in her opinion, ignorance is bliss and that she would leave all the details to me. Unfortunately, the doctor will not see or speak to me without my mother present.

To his credit, he has been very matter of fact during my mother's scheduled appointments and I personally appreciate that. I simply have very basic questions that only he can answer as her physician. I simply want to know what he knows, without sugar coating. It's just hard to have a conversation with him as he will not make himself available, except when he meets my mother.

Since I have been trying to become as informed as possible, during the last app't, I asked him very specific questions about her test results. He was rather surprised and taken aback by my questions.... I managed to asked them in such technical terms that my dear old mom was never the wiser... Or at least she didn't know what it meant and made sure to tell me after the app't to keep it to myself as she was doing well and appreciates living every day as it comes. I would never want to take that away from her.... I actually am so envious that she is able, for the most part, to be able to live in the moment.

Sorry for rambling on.... I am home with the flu so too much time on my hands!

I remain impressed with this forum...it's a godsend and all of you are simply the best to want to share, prop us up when we need it or simply listen. I have spent hours going through individual stories..... Exceptional humanity demonstrated and coming from every continent. It's impressive and heartwarming,

Annette

[bebop]

having a dr that will talk to the family is very important to me. I was fortunate that I could hang back while my Dad was checking out that his dr would talk to me. I would suggest since you have a poa that maybe you change drs to one that is a specialist in mds. someone more open with YOU.

[PaulS]

Hope you feel better. Here is a link to a couple of presentations on MDS - the two at the bottom by Dr. Gail Roboz might be especially helpful - on general thoughts and practices - and on new treatments on the horizon. They are long but very informative and clearly presented.

https://www.pathlms.com/aamdsif/searches

It looks like you are in New Brunswick Canada? If so, I suspect you doctors are not especially experts with MDS as it is not all that common and it manifests in many ways. You want to find someone who has some experience but who isn't afraid to admit when they don't have an answer - but someone you and your mother feel comfortable with - and who will find out the answers to questions you don't know. The nearest MDS center to you that I'm familiar with is the Dana Farber Center in Boston.
http://www.dana-farber.org
It may be too far to travel to - but perhaps you or your doctor can get a telephone consult. A transplant is not an easy thing and you mother may not want one - but if you do go in that direction I think its important to go to a center that is on the cutting edge if you can - transplant technology and protocols are changing rapidly.
That said, it sounds like the Vidaza is working and as long as it works that's great - While it isn't a cure, it can work for a while and as long as it works enjoy those days.

Did they do any genetic studies when they biopsied your Mom? There are some chromosomal anomalies that correlate with better or worse outcomes - and that might influence treatment options.

I am 55 and was diagnosed with low risk MDS 2.5 years ago. I recently started Vidaza with the hope it will work for a while - if not a transplant may be in my future. if you have questions you'd prefer to send via private message that'd be fine - if I can figure out how that works.

All the best,
P

[Annettec]

Hello again Paul,

Yes, indeed, we're in New Brunswick Canada. I went searching online and alas, in Canada, the only Centres of Excellence for MDS are in Toronto. While that's not an issue for me, my mother would never agree to travel. She is adamant about staying close to home.

As for your question about testing for genetics, if it was done, we never got any results from her doctor. Again, he is not so forthcoming with the information...perhaps because it's so dire. All I know is that she has an "aggressive" form of MDS ( inter 2 at dx) and without Vidaza, she will die. When Vidaza is no longer effective, they will discontinue all treatments and she will be placed in palliative care.

I am praying that Vidaza will keep AML at bay for a couple of years at least. I would love to be able to celebrate her 80th birthday with her.....

A.

[Neil Cuadra]

Originally Posted by Annettec

Yes, indeed, we're in New Brunswick Canada. I went searching online and alas, in Canada, the only Centres of Excellence for MDS are in Toronto.

Annette,

I suggest that you contact the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) for advice about doctors and treatment centers in New Brunswick, if you haven't already.

A treatment facility or medical practice doesn't have to have an official Centre of Excellence designation to have MDS experience and doctors that can evaluate and treat your mother.

[Annettec]

Tks Neil and thank you for creating this forum. It's truly helpful....
God bless you and your wife!

[rar]

Is it possible that your mother did not give the doctor permission to talk to you alone? Privacy policies in US prohibit giving medical data without the written permission of the patient. I second the opinion that you need an oncologist that treats many MDS patients.

I was 73 when I had a SCT. At the time I was told that patients in their 80's had SCT. Now 8 months after my SCT my oncologist said that he thinks I am probably cured of the MDS and should live a "near normal" lifetime. I think that should be more than 3 years. See my other posts about recovery.

Ray

[Annettec]

She did give her permission, and in writing as well. She made it very clear to the doctor that she expected me to act as her advocate as she did not want to know too much at this stage....that may change but for the time being, she prefers concentrating on the moment, while I am trying to ensure she has the best care possible, with the most optimal quality of life.

Perhaps her doctor thinks she's in denial.... Which I do not believe is the case..she just doesn't want to know all the complications possible at his stage and how bad things can get. I can appreciate that.

Horrible disease.....

[Annettec]

By the way Rar, your story is inspirational....we need to hear more from folks like you.... Bless you for sharing. I will ask my mother's doctor why this was not an option for her.

[PaulS]

Hi Annette -

At 78, you Mom has lived a pretty long life. How aggressive she wants to be in treatment options depends on her health, attitude etc. Is it better to live another year or two and feel relatively good - or do you risk more aggressive treatments with more risk - including the risk of making the quality of life in the final years worse then they had to be? Not easy decisions. Both my parents had somewhat lingering deaths - and my mother's in particular was very distressing to everyone. In retrospect she would have been better off with fewer medical treatments at the end of life.

That said - it still sounds like you really need to find a doctor who is easier to talk to and more forthcoming - and moveable to admit what he doesn't know. I still suggest you or your doctor try and speak with someone at a center that treats a lot of MDS - like MD Anderson in Houston, Weil Cornell in NYC, Dana Farber in Boston - or maybe try and find someone through the AA/MDS foundation -
I'm pretty sure there are other options short of a SCT to at least try - including combination drug therapy using already approved drugs such as lenalidomide or Thalidomide - or a trial using novel substances.
http://www.mdanderson.org/newsroom/n...k-mds-aml.html

Whatever happens, enjoy whatever time you have left together.

Paul