MDS: How do you die?

[zatstone]

I am a two time (since 2006) cancer survivor. I was given high doses of radiation and chemotherapy. Now (2012) I have been diagnosed with secondary MDS with Thrombocytopenia (platelets), Pernicous Anemia and Normochromic Anemia. I also have autoimmune disease as a result of five anaphylactic reactions to tetanus, penicillin and sulphur dioxide. Psycologically I am strong, Just find my short-term memory is not as good as it used to be. Anyway, knowing in detail what you are dealing with better prepares you to deal with it. So, does anyone out there know what exactly an MDS sufferer goes through in the two or so years before they pass. I would like detail please, not that I am morbid, but because I wish to live as full a life as possible. Many thanks. T

[Neil Cuadra]

zatstone,

It's hard to talk about but it's a perfectly valid question.

People don't die directly from MDS but from complications caused by the symptoms and effects of MDS, particularly low blood counts. What happens in the final stages depends on which types of blood cells an MDS patient is lacking, just how low their counts are, and other factors such as their general health, since MDS can exacerbate other health problems. Without enough red cells (anemia) a patient may suffer congestive heart failure. With a very low platelet count (thrombocytopenia) a patient may die from bleeding into the brain or intestines. Patients with a very low white cell count (neutropenia) are often in the most danger because they are subject to infections and may succumb to pneumonia or other bacterial or fungal infections. Because patients may have to fight the battle on multiple fronts, developing problems with more than one organ or body system, this can gradually make them too weak for further treatment.

Measures can be taken to keep patients comfortable when it's clear that the end is coming. Transfusions can be continued as long as they are effective. Pain can be controlled, although those on higher doses of pain medication may be "out of it" much of the time. Patients may be able to go home on hospice care and may simply go to sleep and not wake up.

Patients can also experience serious side effects from MDS treatments. You can look them up for each drug. When to take, continue to take, or stop chemo treatments can be a very hard decision because it trades one set of risks for another set of risks, and it affects quality of life.

This information is based on what I've read and what I've heard from others. It would be nice if someone with a medical background could confirm this or provide more details!

Living as full a life as possible is a wonderful goal, and knowing what you are up against is important. I think that patients should take reasonable precautions to protect their health but that they should also continue to live their lives. Even thought an MDS patient will usually have to scale back what they do, they shouldn't give up on doing what makes them who they are. And since none of us knows how long we have left, we should all take full advantage of the time we have and concentrate on what's most important.

[bebop]

As my Dad's dr told us..many things can happen. Dad's dr took him off his transfusions when they just stopped working. Of all the things she said could happen did not. I think everyone is different. Like Neil said though with low platelets you can bleed out anywhere. Not just brain or intestines. I wish you the very best on your journey with MDS.

[Chirley]

Hi, I asked my doctor that if I didn't get full blown AML, what would kill me. He said in my case it would almost certainly have been an overwhelming infection because my white cells were really bad.

I used to have treatment with another man and he had a bad platelet problem and he ended up dying from a massive brain bleed.

I think it depends on the cell line most affected and a dollop of luck (?) thrown in.

Regards

Chirley

[sandem01]

With my dad, the dr. suspected he had gone into developing aml when transfusions and chemo stopped working. It was never confirmed, though. He just started going down hill and eventually everything just started shutting down. He started sleeping more, eating less, etc. One day he couldn't even get out of bed, and that had never happened before. That was the last day before he passed. For all we know, he didn't have aml and may have just given out!

One thing I've noticed though is that getting aml doesn't always mean the "end", apparently, not for everyone. I keep reading about people on here who have aml, but yet they are still going to get chemo. I guess there are different factors for different people!

[zatstone]

Thanks for all the responses. Appreciate the info. T

[billyb]

Zat, My wife and I have you in our thoughts and prayers, you are not alone, pay attention to your surroundings, we wash our hands a lot and wipe down door handles, she wears a mask if she is out and her counts are low ( that keeps people away from her ) I dont let her vacume the house and so on, we will be paying attention to the change of the seasons because that will bring on a whole new set of circumstances, sometimes its not about when will this disease get me, but it can be about what can I do to buy more time until a better medication is developed, know your limits, dont fell guilty to tell people no, and dont be embarresed to ask for help, get plenty of rest and eat correctly, remember.. this is our new normal..Billy

[MDSPerth]

As Pauls doctor kindly informed him "Whilst I'm treating you for your MDS you might have a heart attack and die".

Its really kind of doctors to be so informative

[Neil Cuadra]

Originally Posted by MDSPerth

As Pauls doctor kindly informed him "Whilst I'm treating you for your MDS you might have a heart attack and die".

Its really kind of doctors to be so informative

We've heard it said that a medical specialist's goal is to have you die from some other cause. It's gallows humor but there's probably a bit of truth there.

[BAE]

Hello everyone! I'm new to this board & just read this thred. My husband was told he had some kind of Bone Marrow disease right after Thanksgiving. He went right into the hospital for a week. They had a hard time deciding exactly what he had but kept telling him he looked so good! Well, we finally visited with a Transplant specialist who informed him it is definitely MDS. They put him on Vidaza right away & he just finished his third round of subcutaneous shots. He's had plenty of his share of transfusions so far. Last week it was just platelets. They still keep saying he looks so good & they're surprised he doesn't have any fevers.

I don't know what to think about all this! Must I prepare myself to lose the love of my life? We are still anxiously waiting to hear if his sister is a marrow match but know the chances aren't great! What others go through with a transplant is pretty scary too!

Has anyone been cured of this - totally?! Does it come back? I know someone who actually went into remission with Vidaza but she's on Nupogen to keep her white cells up.

I guess I just need help understanding what to expect

Beth E.

[gramous]

hello beth,

How oud is your husband and what's his mds's type?
At this day, transplant is the only cure, he has 1/4 chance that his sister one matched is... If it doesn't so, you have also the internationnal registrary of bone marrow...the transplant is a difficult road but there are a lot of people in this forum who say that it is doable... (see particulary the posts of neil, cam, and a lot of other,...).
You're also treatment whitch can help your husband (vidazza, revlimid, epo, growth factors, ...) but there're not definitively cure.
Stay hoping .
Kind regards and sorry for my bas english :-(.
béné

[billyb]

Beth, Try not to worry about when, where, why, how long and so fourth ( allthough it is allways in the back of our minds and totaly natural ).Planning is one thing, worrying is another. Be proactive, resourseful, I know in the beginning it is hard not to do that and consume your time with worst case sanerios If you surf the wrong info on the internet it can drive you to the brink of insanity. There are a lot of reputable sites with information about MDS that can keep you informed along with folks on this site that have the knowledge, love, care and understanding of what ya"ll are going thru, this is a tramatic time in your life, try your best not to complicate it.Leukemia effects people in different ways, focus on changing your lifestyle, how you do things on a daily basis, how you eat, hygene ( washing hands, contact with people and so fourth ) and things of that nature to stay as healthy as possible.Love and prayers....Billy and Tina