How long Has everyone Lasted?

[JulieMarie]

Hello,

in some readings I’ve done it says that people with MDS only live 4 to 5 years after they were diagnosed. The problem with this is that the articles are dated. I was wondering if this is still acccurit. Also I after reading that one post about making a database with every type of drug out there it might be worth our while to also do one to make sure the average life span hasn’t changed. I’m willing to do the work Things I want to gather up are….

MDS Type
Year Diagnosed
Treatment
Year Passed away (for those of you who have lost love ones but would like to help out)

Thanks for all your help!

[PamyRn]

age 48 female
RAEB-2
diagnosed Nov 2004
Transferred to AML Jan 2005/chemo induction
currently in remission
Await SCT soon

[frank]

age 42 male
RARS
diagnosed April 2004
depending on blood transfusion, with herb medicine, the transfusion time has been sustained. no responce to procrit or any medicine.
Await BMT match.

[Donna]

mom age 62
RAEB 2
diagnosed March 2003
passed away August 2004
frequent transfusions only

[shirlsgirl]

mom age 60
CMML
diagnosed Oct.2004
cyclosporin and prednisone(weening off)
soon to be on Gleevec

[Suzanne]

Here is my info. I was told originally 6 months to a year life expectancy for my type in MDS. I think the prognosis will vary tremendously depending on what type of MDS ,age, physical condition and other individual factors that have yet to be discovered as they learn more about the diseases. I don’t believe you will find any hard and fast way to answer the question of “how long”
One Dr. told me that they believe there will eventually be many more then the 5 categories of the disease now defined. Remember that they only broke out the categories from the original “pre-leukemia designation a relatively few years ago. I certainly know of people I have been in contact with that seemed similiar to my case and had siniliar treatment but our reaction to drugs and survival times have been radically different.

[Neil]

Hi Julie,
There is no hard and fast rule for “MDS longevity’.
Those with RA, RARS, and the low risk RCMD can live for long periods. I am in my 8th year. A friend is in his 15th year. He has a tx roughly every other week and has traveled extensively between tx. Those with RAEB,RAEBt and CMML would be another matter. Much would depend upon their risk level and an how successfully they responded to treatments. There are quite a few who have exceeded the 4-5 year estimate.
Much depends upon the age of the patient at the time they developed MDS, not necessarily when they were DX. That interval could be a year or two.
Research has paid off over the last few years to the point where some patients respond well and their “time” is extended. We will probably see more drugs, stem cell advancements and genetic “tinkering” that will eventually put patients into remission or perhaps cure them.
Aso remember there patients in their 80s who have more than MDS to contend with. MDS certainly complicates their lives, but how much time would they have without it?
Some of the earlier drugs were fairly toxic. Many patients who opted for them found the drugs were worse than the disease. Did these more toxic drugs prolong or shorten their lives. A tough call.
Much to think about, particularly with the 50 and 60 year old patients.

[Marsha]

Hi,

Dx March 2004 (I think I had it long before diagnosis)
CMML
BMT Novemeber 2004

[bper]

My Dad (age 61) was diagnosed 4/02 with RAEB
transformed to AML 8/02

underwent chemo @ Toledo Hospital, then experimental therapy under Dr. Raza in 10/02

passed away 11/02

His mother also passed away from leukemia in the late 50’s at age 47

Beth in Toledo, Ohio

[Bill and Mary]

I was told last month that the mean longevity for a person with my diagnosis was 3.5 years. That is one of the reasons I have decided to go for a transplant. That estimate was based on a BMB done last April. Since then I have had another BMB and have deteriorated a little. Only God knows what the real longevity will be.

Age 59
Originally diagnosed: 4-5/2004 RCMD 20q
rediagnosed: 3/2005 add RS and a few more blasts
Treatment: Supportive care, tx, Procrit did not do anything.
Waiting for transplant

[Sad About Dad]

Dad was dx. in April 2003. He died Jan. 26, 2005. They told him he would only live for six months. I guess that is the standard they tell patients with RAEB. But they are not God. They can’t tell you how long you have no matter what is wrong with you.

[John in GR]

I was diagnosed May 2001 w hypocellular RA and three chromosomal abnormalities. My local hematologist told me three years. A U of Mich hematologist estimated one yr and recommended an immediate SCT. Although my sister is a match, I have declined that approach. I have followed a nutritional/alternative therapy routine. I have had monthly testing and no conventional therapy. I am still doing well, but only God holds the future. I am currently 58 years old.

John

[Jimbob]

dxd Feb 2004 with CMML at age 54

SCT in Mar 2004

doing well

[Bec]

Hey Julie,

It really freaked us out when they told my Dad five years ago that he had RA MDS and had approximately five years. Dad has been on his “death bed” recently and is now doing better. His tx were once a week but after his open heart surgery, he went to tx every two weeks and just recently, he went three weeks between tx. He is now on procrit again and seems to be content just maintaining his illness with tx. He has not given up on trials but decided to take a rest. He just finished helping me build a new house and he now starting on my sisters. He feels good for about a week and a half then is ready for tx.

We hope to beat the odds…

Thanks for your compiling..

Bec

[tahoedonner]

The WEB site below is the best I have found re the question you raise, The gentleman who wrote it, I understand, died ironically of an unrelated heart attack and not MDS….

http://www.ib014a7519.f2s.com/rlb/MDSMain.htm

I hope the link works!

[Author]

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