New to Forum-Brother has MDS

[JaneP]

Brother was 42 when diagnosed 8 years ago with Non-Hodgkins Lymphoma. CHOP treatment unsuccesful, Stem-cell transplant and radiation. Okay for 8 years and diagnosed this past March with MDS. Receives normally 2 units of blood and platelets daily or at least every other day. Getting ready to start 4th round of chemo which they say is not working. He is scheduled to go to MCV in Richmond this week as the transplant unit at Univ. of Virginia is not taking patients until after first of year. He has been running a 103 temp for 3 days this week and today when he went in to get blood and platelets he now has a 94 temp. They wanted to admit him but he said no he wanted to go home. He told me last night that he doesn’t think he is going to make it to Sept. 1. He has been approved for Social Security Disability and he has now filed to retire eff. Sept. 1 from his job of 30 years. I thought 8 years ago was a roller coaster ride, but this is worse than the cancer. His life consists of spending 8-10 hours a day in the hospital getting his transfusions, going home and wrapping in blanket freezing then sweating all night. Repeats every day. I worked in the Cancer Center before when he was diagnosed but now have been in Alabama for the past 5 years. I never expected this to happen.

I read the forums and finally decided I needed to write what was happening to him. I call eery night and have been going home at least once every 2 months.

I heart goes out to each and every one of you here. All we can do is pray. Bless you all.

[Sandy M]

Jane,
welcome aboard, I’m sorry you have the need to find us but at the same time, I’m glad you did because there are alot of folks here that have alot of knowledge, sounds as if your brother has had a very rough time, and I will pray for him as well as your whole family… God Bless

[JaneP]

Thanks Sandy. I have read all that I can on MDS because I was not even aware of it. I had worked with Oncologist not Hemotologists.

I have been reading the forum’s and tonight just needed to unload.

Thanks for the support and prayers.

[Neil]

Hi Jane,
Very sorry about your brother.
Have they considered another Stem Cell Transplant?
Have a friend who went through the same type of situation. his SCT failed after 5 years and was given another.
Will get you more info.
Neil

[sarah]

Jane, welcome to forum. Will keep your brother in our thoughts and prayers. Please keep us updated on how he is doing. Is another stem cell transplant being considered by Dr? What is his classification of MDS?
Sarah

[JaneP]

Thanks Sarah. My brother meets with the new Dr. at another hospital this Wednesday. They want to do another SCT with his frozen stem cells from before. They tested my 2 sisters and myself for bone marrow match and I was the closest but not good enough they said. (4/7) He is at the hospital again today getting loaded down with platelets, and he has an infection in his blood so they are giving antibiotics today intravenously. He has been on antibiotics all last week as they thought he had a sinus infection. He told me this week that he didn’t think he was going to make it. I worked for the Dr. he has now, and he just told me prognois was not good. I am trying to keep him up with a positive attitude. He did so good last time after over 2 years of fighting. I know he has abnormal chromosomes, gets blood and platelets daily (2 units) and this has been going on since March. He finished his 4th round of Vidaza(daily for 7 days) with no change. He had a bleed in his eye and has not regained sight, and they have had to cauterize his nose for the bleeds. It takes hours to even get the blood prepared to give to him. He has had numerous blood clots and they have put screens in his lungs. He has hardly any immune system left now, and has to be real careful. I feel so guilty because I am not there this time. It was so much better when I worked in the cancer center and was able to be with him all of the time.
I wish you and Charlie the best, and will keep you in my prayers for a match.

Jane

[JaneP]

Well, I just talked to my brother. They have admitted him again. His temp went from 103 all last week to 94 yesterday and then this morning it was back up to 102. He has neutropenia infection. They have been loading him up with platelets today (3) so far and are getting ready to give him more blood. I think they want to keep him in until Wednesday. That is when he will go to MCV about the transplant. He just told me that everything is making him sick. He did just eat some pudding. He has lost 65 lbs. since the end of March when he was first diagnosed. Will write more when I know more.

Jane

[KATHY1]

Jane,
so sorry your brother and the rest of the family have to go through this. Keeping you all in my thoughts and prayers.

Kathy

[JaneP]

Thank you Kathy. It is such a long roller coaster ride for us all, but most of all for my brother.

I am so sorry about your Mother too. I am sure that was a very difficult time. No matter how prepared we think we are, I don’t think we are really.

Jane

[Sandy L]

Hi Jane,

So sorry to hear about your brother. He is going thru some tough times but he seems to be a fighter. I will keep him in my prayers.

[JaneP]

Thanks Sandy,

I wish you and Mike the best as well. It is so nice to have this forum available to speak to others. What were our lives like before the computer.

Bless you!
Jane

[danz]

I hope I’m not out of line in asking. Did your brother return to work after the first BMT. Also, what does he do on his job.

I’m asking because I had a BMT a little over a year ago for MDS-RAEB. Except for a little GVHD, I’m fine. I am having trouble getting a release to return to work. I’m just hoping to find out what other’s did after the BMT.

[Carrie]

Jane,

My dad also had NHL, chemo, then a SCT. Then Rituxan. A year and a half after ANY treatments, he got MDS. He’s also been struggling with infection. He always goes to the hospital but after this last bout (almost 2 months and he’s still there), I have to wonder if he’ll want to go back in if he ever gets out.

I hope your brother and my dad can hold out for Revlimid and that it’s the miracle we’re looking for.

Love,
Carrie

[Sandy M]

Jane,
you never can really prepare yourself for such a roller coaster ride such as this illness, your constantly on guard and walking on pins and needles, and as far as I believe …from personal experience is, you can TRY to prepare for ones illness and or passing, but you can NEVER prepare for their absence ! I don’t mean to sound blunt here, but it’s a big part of the picture.
Please keep us posted on your brother hun, we’re all praying for him…

[JaneP]

Danz,

My brother was out of the hospital after the first SCT in 10 days. He did fine. Had radiation and then returned to work and had been working for 8 years. No health problems until this came up suddenly in March. They had tried to get him to go on disability when they found the cancer. In a way, I think they want you to retire and enjoy your life, because it is all so unpredictable if you know what I mean.

I truly wish the best for you, and pray for you and your family.

Jane

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