New member (mom with mds)

[Joanne]

Hi All
My mom was diagnosed with MDS (RARS) in the low risk group in May. She is 63 and her doctor has told her she was about 4.8 years of life left. Her hematologist has told her there are no drugs, treatment and she'll just have to play the "wait and see game". Her follow-up appointment is in July. I have been lurking on this website for a little while and have read about different drugs and treatments. Are these drugs not available in Canada? Why hasn't her hematologist told her about these drugs? Sorry for all the questions but I'm desperate here. My mom has so much to live for and thinking she only has 4 years left really frightens me.
Thanks for listening!

[Dick S]

Of course there are drugs an treatments for MDS. Just reading here can show you that. I can't see why they would not be available in Canada. I sure would be demanding some answers or explanations from that Hematologist.

[Joanne]

Do you think it's because she is still in the low risk group? She has no symptoms and wouldn't have even known she had the disease until she was convinced to have a bone marrow biopsy (at the urging of my sister) because of her excessive iron.....

[Dick S]

Originally Posted by Joanne

Do you think it's because she is still in the low risk group? She has no symptoms and wouldn't have even known she had the disease until she was convinced to have a bone marrow biopsy (at the urging of my sister) because of her excessive iron.....

I too am in the relatively low to intermediate risk group, at least for now. They Know what I have but my blast are <5% and HGB is at 10.9, so the numbers just aren't there yet. My disease is graduating very slowly and I too am constantly being told by my Primary Care and my Hema/Oncologist to be patient and "wait and see". It's a numbers game and they seem reluctant to expend time and drug treatments until the "numbers" hit certain thresholds. In the mean time I am extremely fatigued and tired a lot. But don't let them tell you there are not drug and treatments out there and it seems new ones being tested all the time.

[Neil Cuadra]

I don't think your mom is talking to the right doctors, Joanne, and that she should see an MDS specialist to get a more accurate assessment. MDS is rare, and her physicians may simply be uninformed about it. You and they can get basic MDS information from the Aplastic Anemia & Myelodysplasia Association of Canada, but a specialist can give a full evaluation.

Whether or not certain drugs are available in Canada, saying that they don't exist is simply incorrect, and drugs are not the only treatments for MDS.

It's also inappropriate for a doctor to tell her she has 4.8 years of life left, if that's how the doctor worded it (sometimes patients hear a different message than the doctor was trying to convey). Medical statisticians may report that a certain broad group of people in a certain age category live for an average of 4.8 years after diagnosis of a certain type of MDS, but that doesn't tell you what to expect for one individual patient. Although patients can do worse than expected based on statistics like that, they very often survive and live fairly normal lives for years after what these averages would lead you to believe. Also, patient statistics are based on years past, and new and better MDS treatments improve survival rates every year.

[Joanne]

Originally Posted by Neil Cuadra

I don't think your mom is talking to the right doctors, Joanne, and that she should see an MDS specialist to get a more accurate assessment. MDS is rare, and her physicians may simply be uninformed about it. You and they can get basic MDS information from the Aplastic Anemia & Myelodysplasia Association of Canada, but a specialist can give a full evaluation.

Whether or not certain drugs are available in Canada, saying that they don't exist is simply incorrect, and drugs are not the only treatments for MDS.

It's also inappropriate for a doctor to tell her she has 4.8 years of life left, if that's how the doctor worded it (sometimes patients hear a different message than the doctor was trying to convey). Medical statisticians may report that a certain broad group of people in a certain age category live for an average of 4.8 years after diagnosis of a certain type of MDS, but that doesn't tell you what to expect for one individual patient. Although patients can do worse than expected based on statistics like that, they very often survive and live fairly normal lives for years after what these averages would lead you to believe. Also, patient statistics are based on years past, and new and better MDS treatments improve survival rates every year.

Thanks for the info.
I really do wish she would see another hematologist. This guy is suppose to be the "best" around here. I don't see how you can be considered the best when you hand over a piece of paper (printed off from the internet to boot) to a 63 year old couple and circle the medial survival rate of 4.8 years and say "I'll see you back here on July 8".....it's so frustrating. Because she is symptom free my parents are playing the "if we don't talk about it's not really happening" game. I don't think she would even consider seeking out a second opinion and because I'm only her daughter I can't make it for her.....

[Birgitta-A]

Hi Joanne,
All patients with MDS are different and nobody knows the prognosis for each person as Neil already told you. I read a summary from an article from researcher at MD Anderson Cancer Clinic where they had patients that had had MDS for 15 years .

The reserachers wrote that the median survival was more than twice as long after 2000 than between 1980 to 1990 because now we have much better supportive care and more specific treatments like Vidaza.

I think it is true that for example Vidaza isn´t approved in Canada - it is not approved in Europe where I live . I could get the drug on license if I wanted to but I prefer to wait till there are drugs for low platelets - Vidaza can decrease the platelets.

Many patients are waiting for better drugs or participate in clinical trials if they want to try new drugs. They have many clinical trials in Canada. Your mother belongs to a patient group where the patients have much time to accept their disease without deciding anything now about treatment.
Kind regards
Birgitta-A
69 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal for iron overload, neupogen injections for low white blood cells, asymptomatic

[Neil Cuadra]

You know your parents better than anyone. For many adult children of patients, it's hard to decide if you should intervene or let them handle it in their own way. Trusting a single doctor with your health care and asking no questions is an old-fashioned notion, but that attitude persists, and when people insist you may have to respect their decision.

Personally, I believe that patients do best when they ask questions, understand for themselves what's going on, and are ready to be a partner with the people treating them.

If you want to push harder for her to see an MDS expert, I can make some suggestions. Perhaps some of them will suit you:

* Accept that your parents are probably scared. Understand that not talking about it can be a coping mechanism. Tell them that you are scared too, but you are learning what can be done and want them to let you help.

* If you are aren't 100% sure she wouldn't consider seeking a second opinion, bring it up again. Tell her how important it is and see if you can talk her into it.

* Talk separately to your father and spell out the facts.

* Get the brochures from AAMAC and share them with your parents. If a descriptions of MDS and its treatment options is sitting on their coffee table, I bet they'll read it and learn from it.

* Talk to your mom about her "being referred to a specialist" rather than "getting a second opinion." Some patients feel it shows a lack of trust in their physician to get a second opinion, even though a good physician should understand it's best for the patient and even welcome the chance for confirmation.

* Find out exactly who you would consult ahead of time. Depending on where you are in Canada, you'd probably prefer someone local, but the best MDS treatment centers I know of are in the Toronto area: the Sunnybrook Health Sciences Centre and Princess Margaret Hospital. Then, rather than ask her about the idea of seeing a specialist, tell her the details: the name of the doctor she will see, where and when.

* Talk to your mom's doctor yourself. If you need permission from her before the doctor will speak to you, get the necessary forms and ask your mom to fill them out. You could talk to the doctor about her condition, ask for test results, ask if he objects to your mom getting a second opinion, or ask if he'd be willing to consult a specialist.

* Get a copy of you mom's test results (blood counts, maybe even the bone marrow biopsy results). Ask her doctor or another doctor to explain what they mean, or let Marrowforums members help you understand what they are measuring.

* Offer your mom a chance to talk to other patients by phone. Hearing a friendly voice from someone facing the same thing can be very helpful, especially with a patient who may not know what to think, what to ask, or what to do. The AAMAC has a peer-to-peer support network of volunteers for this, and they can find someone for your mom to talk to. The AA&MDSIF can do this as well with their own Global Support Network of volunteers. Canadian volunteers would presumably know more about the Canadian health care system, so they might your first choice.

* If it isn't too far for you and your parents to travel (or just you alone), take a "vacation" to attend the AA&MDSIF 2008 Patient & Family Conference in Washington on July 27-29. You can find the full schedule here. At the conference, you or your mom can seek out other MDS patients, including Canadians, and get medical information directly from experts (only general questions and answers though, not the same as an individual appointment and full consultation).

* Check if there are local programs or support groups, perhaps at a hospital in your area, to help newly diagnosed patients like your mom.

[Joanne]

Thank you to everyone who has replied to my thread. I am so very happy I found this site! Everyone on it is wonderful and very informative. I feel much better already and I will passing this information on my mother.
Thanks again!

[ESeda]

Hi Joanne,

You have already gotten the best advise ever, right here in this forum. Keep on asking questions. Information is power.

You are a wonderful daughter taking the bull by the horns to help your mom. I wish my children had your heart felt desire to protect and go to bat for their parents. Your best ally, I believe, in your quest to have your mom seek a specialist is going to be your dad. Just seeing the way you show your love and caring for your mom tells me you learn that from your dad. Remember, your dad may feel helpless because he can't control or cure this decease. So help him be informed. If possible, go with them to her next visit to the doctor. Go prepared with lots of questions for the doctor to answer.

And don't you be afraid. This decease has a cure, God willing. So be strong do your homework and forge ahead.

We pray your mom will do well.

Eli.

[LynnI]

Hi Joanne;
I am from Canada and I have recently been dx with MDS/MPD-UC, with no chromesome changes and low risk at this time. I would recommend that you look at the MDS Foundation website, they list what they call Centres of Excellence, hopefully one is near you.

[Marrowforums]

The MDS Foundation and the Canadian treatment centers they have designated Centers of Excellence are listed on the Marrowforums Medical Resources page.

[Donna E]

Hi, welcome to the group . . .
Please see other doctors. My Dad was diagnosed in the early to mid 90's with this illness and I was terrified he would not walk me down the aisle at my wedding and never see my children . . .
He walked me down the aisle and praise God has seen the birth of my children. They are now 5 and 6 years old. We are having a difficult year this year and he is now on Vidaza. For years he was helped with drugs to build red blood cells and white blood cells.
PLEASE do not lose hope and PLEASE do not allow any doctor to tell you how many years of life your mom has left. I have seen people overcome the biggest health challenges with love, prayers and good doctors.
I have found great comfort in aamds.org and now in this forum.
Hang in there and know we are here for you and your mom.

KEEP THE HOPE . . .

Donna

[Joanne]

Wow Donna that is great news. I love to hear stories about that and I am glad to hear your dad was around to see your children. I have 2 girls as well who are really close to my parents and I would love to have my mom see them grow up as well.
Unfortunately, Vidaza is not yet approved in Canada. I sincerely hope your dad does well on the drug.
Thanks again for your reply