Hope?

[SusanJ]

I posted last week about my father’s new diagnosis with MDS. I have been reading this forum and it is all so depressing I can barely stand it. Is there any hope to be had with this?

[franm]

Dear Susan:

yes there is hope regarding MDS. My husband who is 73 was DIg with MDS over a year ago. So far he is on Folic Acid, Vit. B-12 and Iron pills. He has not started anyother treatment. He feels fine, a little tired at times but is doing well. He sees his Oncologist once a month and goes through blood test before seeing her. She said his blood test were just a little over normal and she doesn’t want to start him on any other treatment at this time.

So, there is hope. Hang in there and Pray.

Franm

[Suzanne]

Heavens yes! I think there is lots of hope. So much has developed in the past several years in successful treatments and more alternatives are coming out of research all the time! Many of us are living longer then predicted and have good quality of life. There are lots of health situations that are diagnosed that are very serious and this is one of them-but not hopeless!

[Joannie]

Yes there is hope. Try not to dwell on the worst possible scenario. There are treatments available, adjusting ones diet and activity can help. There are people with MDS that are living for years and years and are still doing well. Deal with each battle as it comes and enjoy time with your father. I know it is hard and it feels like your world is falling apart and you feel helpless, but take things day by day, deal with each thing one at a time. Hang in there. Joan

[SusanJ]

Thank you for the positive replies. I pray constantly about this. It just seems like everything I read on the web is all gloom and doom. It really helps to hear from people who are living normally with this disease. God bless all of you!

[lynette]

Susan,
Yes, there is hope. My Mom was given 3 months to live. Now, because of a clinical trial, she is in remission. Had we not taken a chance, with a great deal of faith and hope, Mom might not be here enjoying life.
Stay positive!
Lynette

[Dennis]

When I was dx’d with MDS I was devistated. Figured I wouldn’t live that much longer. Since then, I started on Vidaza, and have had amazing response to it. I’m waiting for a bone marrow transplant now, and looking forward to beating this condition.

There IS hope. But it’s not something the docs give you. It’s something you decide to grow within yourself.

Dennis

[Ani]

Susan J.

Dennis is SO correct when he says that we must “grow hope within us”. A positive mental attitude, whilst often so very difficult to produce, is of great importance. My husband, now 69 was given 6 months to live over 3 years ago and apart from monthly blood tests, vitamins, good diet including pineapple and the “dreaded” sesame seeds, has required no other treatment.
He has just completed renovating a bathroom and is now painting a bed room.
Sure we were devastated at the prognosis but after doing lots of research we believed the case was not as hopeless as was suggested, as much of the information out there but NOT on this Forum, is a few years old and there have been tremendous advances in the last couple of years. Of course his counts are not normal, platelets have been around 65,000 for a few months,but he feels well, has several interests and is continuing to hope.
Please don’t give up, be positive.
Shalom,
Ani

[SusanJ]

Thank you both for the positive replies. My dad has always been very active and the prospect of him not being able to live the active lifestyle that he is accustomed to and watching him deteriorate & suffer has slapped me in the face. All of you new friends who have replied to me and of course my faith in God have renewed my hope that he will live many many more years. God bless you all!

[g-masews]

I ditto everyone’s reply. My husband’s dr. said not to read too much into the “time frame” prognosis, as it is only a median, and each patient is different based on age, over-all health, and factors of the disease. But he also guessed that my husband was looking at maybe a year without a transplant. That was a year ago, and the man has not even had a headcold since. I catch everything that comes down the pike; of course he is exposed to me, and he gets nothing. He also is on no treatment at all, and hasn’t been. So, he has beaten the odds without treatment and I know there are treatments available when the time comes, as so many of you have proven. So, take heart. Take each day and make it what you would want it to be.

[SusanJ]

Thank you,thank you,Thank you, Thank You!!!!!! Thanks to all of you I haven’t cried in 2 days and I am so much more optimistic about everything!
I am so thankful that I found this wonderful support group!

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