Kathy M.

[Kathy M.]

Hi, my name is Kathy and my husband was diagnosed with MDS on July 3rd.I am overwhelmed and very scared for what the future holds for us ....he will be 65 in Sept. he had 1 week of Decitabine starting July 9th and goes for labs2x/week....all blood counts are low and he has had some transfusions also....apparently a transplant will be in the future and the thought of what he may go through really is scary...I am having trouble coping and I am afraid that I am not strong enough to help him...I would appreciate any feedback from anyone.

[Al's Wife]

Kathy,

You have found the right forum. Believe me, we ALL know what you are going through right now. Things will get easier. If you read through these threads, you will see the fear that we all have when our loved ones are first diagnosed. If you are like most of us, you had never heard of myelodysplasia before July 3rd when your husband was diagnosed.
I'm sure you've probably read and gotten the pamphlets from the http://www.aamds.org/ website.
If I've learned anything on this rollercoaster ride, it is: Don't be afraid to ask questions, get second opinions, and be your husband's advocate - you must do this!
And I promise that that sick feeling you probably still have in your stomach will go away eventually, only to rear it's ugly head when the numbers aren't what you think they should be.
But just know that there is hope and that there are a lot of new trials going on. My husband did not respond to Vidaza (which is similar to Dacogen) and so he is now in his third clinical trial and we are NOT giving up. One of our doctors told us that there have been more advances in MDS in the last two years than in the previous ten and new trials are being introduced all the time.
I hope and pray your husband will have good results with the Dacogen. Please let us know how he's doing. You are both in our thoughts and prayers.

[DanL]

Kathy,

An MDS diagnosis is a lot to absorb in a short period of time. As noted by Al's wife, the sick feeling subsides, the fight comes out, and you will have the strength that you need for you and for your husband. For now, just make sure to ask lots of questions so that you understand what is happening to your husband before, during, and after treatment. Knowing what to expect really helps. Get to know what impact low blood counts have on daily life and make the adjustments.

There are a lot of really good people on this forum that can help you through with information or moral support as needed. Make sure that you take several deep breaths and take care of yourself while you are caring for your husband. It is important to maintain some balance and routine to your life as well.

Wishing the best for you and your husband.
Dan

[SLB]

Hi Kathy,

It is definitely a roller coaster ride but it does get easier. What the others have said is well put. One thing I have realised, mainly from reading this forum and others journeys, is not too focus so much on the prognosis stats that u can read. I think most don't necessarily take into account all the new treatments/ trials that are happening. And definitely read of other forum members journeys, I know it helped me when I was first diagnosed. What type of MDS does your husband have? How well did he tolerate his first treatment? All the best, stay positive, I'm sure you will discover strengths you never knew you had.. and you won't believe how quickly you adapt to all the terms and lingo!

Sharnie.

[kgtuck]

Kathy, Hope I can help ease the INITIAL FRIGHT. My husband and I went thru the shock diagnosis and I began dacogen treatments 3 years ago. The first few months can be a bumpy ride (as it takes a few months for the dacogen to "kick in"), but you just have to ride out the storm.

My advice is to learn as much as you can, keep ongoing dialog/questions with your drs. and nurses; join a local support group if you have one in your area-you can find out through the AA/MDS Foundation website, (along with this wonderful forum online)!

It's been 3 years now and the dacogen continues to keep me healthy with no symptoms of the disease. Hope things go well for you and your husband as well!!!!

Sit back, take deep breaths, and take care of yourself, also.

Karanne

[milliken2]

Kathy;
It's a good idea to keep a notebook with the differences you notice in your husband, and get copies of all of his lab work - and keep them in chronological order. This way - if you do see another Doc - you will have all of the records you need to take with you.
Yes - it is definitely an up and down time. My husband turned 66 in May - and he has received 5 treatments of Dacogen. Not to scare you - but so far, it has not helped Earl. But people respond differently.
Learn as much as you can, and know that we are all here to help too. The forum has been a blessing to me - since I never heard of MDS before Earl's diagnosis. I am still learning for sure. And it is probably a good idea to make sure you get your labs drawn at the same place every time - this way there is less chance for discrepancy. Take care, and keep your chin up.
Beth

[Kathy M.]

Thank you Beth,
I too am an R.N. and have never heard of MDS... it is ironic how our hubands are so similar in age ....John was diagnosed on July 3rd after having been in the hospital twice in the month before ....he has RAEB 1 with 5 - 10 % blasts and has had the 1 round of Decitabine due for another in a week or two ... 3 of his siblings are matches for him so the youngest has been chosen to be the donor for his stem cell transplant ... it hasn't been decided yet when this will be though...we are still overwhelmed by all of this.. he is neutrapenic so our life has come to a screeching halt for any activity,,,the thing that bothers him the most is that he was told to stay away from our grandchildren due to the chances for infection...life is certainly not the way we knew it....anyway ,thanks for taking the time to respond to me ... I really appreciate any advice I can get.