My brother just passed away from MDS

[BILB]

My only brother Jim just passed away after his courageous battle with MDS on Sept 1, 2008. He was 59. He was diagnosed MDS with several chromosome abnormalities almost exactly one year earlier. Before this disease Jim was a teacher,coach always excelled in athletics. He was a dad of five. This disease came out of nowhere. Jim never had a bad habit and alway stayed in excellent shape. This past year was like one long roller coaster ride that started at the Cleveland Clinc and ended at Johns Hopkins. He went through many clinical trials including induction chemo. His MDS evenually progressed to AML. He developed complications. The only constant through this whole ordeal was Jim’s faith in God. He never complained one time or asked why me? He truly believed this was all part of God’s plan till the very end. Jim did use this forum a few months back. I’m telling everyone this story to use my experence of this disease to try and offer some help to anyone who might have questions. I know it’s a scary disease from the beginning. But always have hope, because it helps and remember every patent that goes through this has different outcomes. I talked to my brother almost everyday so I stayed close to the medical side. So please feel free to ask questions. If I can help in anyway I sure will try. I don’t know all the medical specifics, but I do know from a caregiver’s point of view.

God Bless All

[3kids1dog]

Prayers to your family. Thank you for putting yourself out there to being a sounding board for questions.

[Mary4Mike]

We are so sorry to hear of the loss of your brother. Fifty nine is still so young.

Faith in our Lord brings such a beautiful peace that it helps make these earthly ordeals bearable.

Our thoughts and prayers are with you and your family.

[Zoe]

I am sorry to hear about your loss. Thank you for your willingness to use your pain to help others. You will be blessed beyond measure.

Zoe

[Sister]

BILLB,

I am so sad for you. My brother was just diagnosed three months ago and he is not doing well. He also has several chromosome abnormalities. He has had so much infections that doctors started giving him gamma globulin to beef up his immunity (is this common? I suspect he may have an immune deficiency problem in addition to MDS) He just started on Revlimid.

I think the hardest part is the unkown down the road — I have no idea what to expect; how much time does he have? Is his doctor the best? How agressive should he be?

I wonder if going to the “best of the best” place (like Hutchinson, MD Anderson, Mayo, etc) should be done right away? Or should one wait and see? His doctor seems very competent (UCSF).
I would like to have your viewpoint. Thank you and god bless you.

Sister

[txnmomma]

Thank you so much for posting this about your brother. I am sorry to hear about your loss.

[BILB]

Sister, Thank you for your questions. I hope my experience with this disease can someway help you. Obviously, I’m not a doctor, so don’t take this as medical advice, just my own personal view after following this disease through its course. First, your fighting a very tough disease, especially when your dealing with several chromosome abnormalities. I know my brother had the worse ones. So maybe your brother doesn’t have the same. My personal opinion would be to try ,if at all feasible, and contact MD Anderson, Johns Hopkins,Kettering Sloan or one of the few other top hospitals (do your reasearch) in MDS. At least try to get a second opinion. The top hospitals are at the cutting edge and offer some different new trials it seemed. They are also in a special cancer alliance and share their research. Maybe my brother’s outcome wouldn’t have change, but I really think it would have given him more of a chance at one of these top hospitals. Here’s a little detail on my brother’s story. It might give you an idea of some of the things that might lie ahead. My brother started at Cleveland Clinc and his doctor was very reassuring to him at first. The doctor was suppose to be one of the top research doctors in MDS. But the hospital can only offer the clinical trials they have available ongoing at that time. He went through clinical trials of Vidaza,Revlimid,Dacogen and maybe one more. He finally went to Johns Hopkins with AML, but by then the disease had progressed too far. They were busy just trying to fight the complications (fungal infections,etc.)by that time, not the disease. So no new trials were ever tried. My brother was in very good health(exercised daily, healthy foods)going into and throughout each clinical trials. He also had a very strong faith in God. I know it helped him. He tolerated each chemo treatment (Vidaza,Revlimid,Dacogen)very well. The trials slowed down the progress of MDS but couldn’t stop it. It just basically gave him more time. The doctors kept saying he was a very strong patient. Then came the induction chemo. He actually tolerated it very well, but it knock down his resistance so much, a very little scratch on his leg turned into a major fungal infection he never got rid of. The chemo induction will either put the patient into remission or make the disease worst. I think its like the “last chance” trial. He had zero blasts right afterwards. Then the disease came back like gangbusters. But remember every patient is different. Your brother might respond better on one of these chemo drugs. Never give up hope and attack this disease as aggressive as you can as soon as you can.
God Bless

[kami]

Sister,

My dad had Lloyd Damon as his doctor at UCSF…he was great on every level. He knew his stuff…and was always open to speaking with other docs at other hospitals.
Who is your doc there??

k

[Sister]

BILLB,

Thank you so much for your advise.
My brother started on Revlimid for a couple of weeks now, and it is still too early to tell whether it will be effective. But his immune system is SO weak, doctors are just trying to keep him having another major infection.
I would like to ask you one more questions. When your brother went from Cleveland to Hopkins, did your brother initiated it, or was it through the doc at Cleveland? My brother had talked to Mayo, but no decisions yet.
My sister and I will soon get tested to see if one of us is a match for bone marrow trasplant.

Thanks again for your help.

Sister

[Sister]

Kami,

My brother’s doc at UCSF is Dr. Wolf. I believe he and Dr. Damon work as a team. Who is his doctor now? Thanks.

Sister

[BILB]

Sister,
Actually my sister and I had discuss the option before proposing it to my brother. The discussion was initiated because Cleveland Clinc had said the couldn’t do any more for my brother(blasts were at 50% and AML had begun) except palliative care. My sister contacted Johns Hopkins and Dr. Karp said a clincial trial was available. He had to wait for 21 days because he had started a low dose chemo palliative care treatment at the Clinic. His condition got worst and he was became too sick to ever try the clinical trial. I guess my point was to explore all possible options while you can. I still believe these top rated hospitals can possibly offer options that other hospitals can’t.

God Bless

[choijk]

Bilb,
Please accept my deepest condolescences. I am truly sorry for your loss.

[choijk]

Bilb,
Please accept my deepest condolescences. I am truly sorry for your loss.

[CarolineG]

Sister.

Please accept my condolences on the loss of your brother. You are very strong to continue to help others through your loss. I will keep you and your family in my prayers.

Blessings,
Caroline

[Sister]

BILLB,

Thank you for your response and advice on Sept. 16.

Would like to ask you two more questions. Did your brother have high blast number? Did he ever consider BM transplant? Thanks.

Sister

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