Re: husband newly diagnosed

[xseoer]

God bless you!!
I hope you’ll be well soon.

[bobweinberg]

All I can tell you, Susan, is that I was diagnosed with MDS/RARS in 5/98 at 48 years old, immediately needed transfusions and have received over 500 unita of packed red blood cells since that time. I am now 60 years old and my iron level is steady (ferritin = 480) because I take Exjade religiously. I have had a great 12 years despite the transfusions and expect a bunch more years.

Bob

[heather de boer]

My husband has had low risk Refractory Anaemia for four years, as far as we know. He is on watch and wait, having blood tests every four months. His oncologist has told him he sees people who have had this for over ten years and are still the same. He has no chromesome abnormalities. We have been told to enjoy our lives and not worry about what may never happen. My husband is 67 years old and in good health at the moment. Has anyone else had a similar experience to ours?

[g-masews]

My husband was diagnosed 5 1/2 years ago with RCMD, high risk due to several chromosome abnormalities. Doctors advised transplant, which he chose not to proceed with. He was 54 at the time. His red cells are his best line and never drop lower than 10 therefore he has never needed a transfusion. His white cells are low, but he never seems to catch a cold and his platelets have been dropping slowly over the 5 years, but not a problem yet. He gets a CBC twice a year, and is stable. According to the WHO prognostic scoring, there are only 7% of people in his catagory still alive at the five year mark. We just go through life each day no longer worrying. He still works full time and you’d never know he had this disease.

[ramey2148]

Miriam,
Hi and sorry about your recent findings. I just turned 33 on the 21st. but was diagnosed with MDS in Feb. of this year. I had several chromosomal abnormalities. My Dr. sent me to Temple to be treated do to my age. I went to appointments regulary and good thing. Overnight my MDS turned to AML in June. As you probably know there will be alot of ups and downs during your husband’s treatment but just try to stay as possitive as posssible. I had a transplant on Aug. 31st and am doing what I can (sometimes more lol). My donor was a 9 out of 10 match. You are on a good furum if you have questions because there are alot of knowledgable people on it. Ask anything there are no dumb questions. Good Luck
Bob

[LilyRose]

Hi, Susan: After reading your initial post and subsequent comments, I would like to encourage you by first saying your husband’s counts look pretty good. I would also like to encourage you by saying I have been treated for MDS going on 6 years, and though the initial diagnosis can be a bit unnerving, once you become familiar with the terminologies, treatments and medical surroundings that go with MDS, a lot of the fear and anxiety that you initially experience will dissipate.

My MDS is considered moderate to high risk. I am not a good candidate for a transplant, yet after almost 6 years, I can honestly say I continue to experience a wonderful quality of life. I have had to accommodate certain things, such as not going into crowds when my white count is low, not travelling as much as I use to, accepting the fact that regular blood transfusions and monthly chemo treatments (Vidaza) are keeping me alive and are a gift, thankful that Vidaza is available since it was so new when I was first diagnosed that my insurance company didn’t even have a code for it, thankful that the only side effect I have to deal with is fatigue, thankful for my wonderful fellow patients, several of whom have become dear friends, thankful I still work part-time, and thankful for my husband and children who are such amazing supporters.

MDS is a serious disease, but it doesn’t mean your husband has one foot in the grave. He can live a long and fulfilling life. My doctor tells me his goal is to keep me alive until there is a cure, and test trials are proving more and more encouraging each day.

My thoughts and prayers are with you and your husband. May you walk this journey together in love, unity, faith and the knowledge that life is a beautiful gift, and MDS can never change that.

Lily Rose

[Mary4Mike]

Lily Rose,

You have a wonderful outlook and I totally agree with you. If you look for the blessings, you will always find them. Everytime we have been in a chemo room setting, we see people who are so much worse off than my husband. Having been on the transplant floor and the children’s cancer center (same clinic where we go), we leave saying a prayer of thanksgiving and asking for strength and healing for everyone on that floor.

My husband lived with MDS for 10 years before transplant. It really never stopped us from doing what we wanted. Mike knew when it was time for transplant. He had run out of treatment options, his cytogenetics were changing, and he was getting no benefit in the way he felt from transfusions. He knew he didn’t want to live the rest of his life feeling exhausted, fuzzy minded, and physically weighed down.

He went for it and he is now free of disease. We put it in the hands of the Lord and it was His will to heal. Of course, the medical people play a part in this, but the ultimate healer is the Lord.

We had a doctor tell us many years ago that he could keep Mike alive a long time with transfusions. We had another doctor tell us that Mike would most likely die from something other than MDS. Perhaps it was because of the RARS classification. When he was first diagnosed, we said we would never attempt transplant – the statistics for survial weren’t that good. Well, never say never. You do what you have to sustain life, because as you said, life is a beautiful gift.

Take care,
Mary

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