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I am 81 year old Dad and I have had MDS for about 8 years. Since 2015. I have been lucky as was given 1-2 years to live.
I took Vidaza Chemo for 6 months. I was in hospital June 2022 with blood bacteria. 2 days from dying. Antibiotics
fixed me. I have been on HGB transfusions most of last 6 months. I have a hospice nurse on call when I need her.
My wife has drugs in refrigerator to give me when time comes.. My white cells are 1.5 and HGB at 7.2.
I expect not to make it very far into this 2023 year. I do not want any transfusions while in hospice. Just good
Just to share my MDS story. I was diagnosed with it in 2015 and given 1 1/2 to two years to live. I took Vidaza chemo for 6 months and quit. I did not need transfusions until 2022, and beginning this year get Procrit shot each week. I get transfusions about each week, now and may skip a week here and there. My last CBC was WBC 1.2, HGB is
7.2, and PLT 46. I am going on 8 years now and surprised my Oncologist. Best wishes to all….
I am 85 year old male, and have had MDS for 7 years now. Was told I would die five years ago, but held in there. Took Vidaza chemo for six months, and did not like it. I started getting Transfusions this year and needing more and more. I am planning to stop all treatment soon. Just tierd of all the BS dealing with CBC numbers, hospital visits etc. This MDS is a Terminal disease, and I have no fear of dieing. I have a Hospice company lined up and
will let my wife of 37 years give me drops of medicaton to ease pain and suffering.. I have a great wife.
To the children of patients.. Pleae let you parents make the end of life decisions.
My best wishes to all of you. I am an 81 year old male and have been diagnosed with MDS in 2015. I had 18% blasts at that time and given about 2 years to live. I was given chemo injections of Vidaza for six months, and
just decided to stop them because of the pain and copmlications of constipation.
So, I am still here going on year 8. I make weekly trips to my Oncolgist for CBC check, and a shot Procrit.
My WBC average around 2.0. My HGB is 6.7 up to 7.8 with transfusions of one unit about every 4 weeks. My platelets are holding 20.0 up to about 60.0 I have a nurse lined up for home care when the time comes for hospice. I live season to season, and am not afaid of the end. My father died of this MDS at age 78, My brother age 89 has it also. His numbers are identical ot mine but has had MDS for 3 years.
I am sorry for your loss as well. I too have MDS.. My primary doctor noticed that my blood test showed me to be borderline Anemic. I had blood tests every year, so she knew i had a problem. She had me wait for 3 months and had a second test made. She then refereed me to an Oncologist. After many more blood tests, and a bone marrow test
he determined that I had MDS RAEB_2. Serious… Sent me to University of Chicago for second opinion because I looked so healthy. They too arrived at same conclusion. I am 75 years old. He gave me one to two years to live.
He gave me 6 months of Vidaza Chemo which might help. Another Bone marrow test. No improvement.
I am one year into my prognosis,and feel ok, Look great so everyone says.. I expect to die in 2017 as my CBC
numbers are starting to go down. I decided to not try anymore Chemo, or Stem Cell transplant. I enjoy the few
months I have left, and from what I have read, the Transplant program may well kill me too. In the mean time
I travel and enjoy life. I expect to die from an infection, or hemorrhage. Hemorrhage can be controled by transfusions. The Platlets last only about 6 days. I expect to get many transfusions, until I get an infection
and die.. My father had the same leukemia 31 years ago. He had infection in his belly, went to hospital and died within a week.. I hope to be as lucky.
I have positve thoughts on life. Fortunate that I have lived to 75 very healthy.. 50% of the population born in 1941 are gone. That is life expectancy.. I look at Obituarys now and see so many poor souls die as babys, or young adults.. I am Lucky..
So glad you are still doing good. you posted on Jan 14, They found a clinical trial for a drug (AG-221) that works for people who have a IDH2 gene mutation. I dont have that gene mutation. However after reading all the hell you went through in you blog, I would not want a transplant at 75 years of age. I urge others to read
your comements by searhing “new to MDS’ Ray gave us great detail on his success to date.
Personaly if I did a Clinical trial and got my blasts down to 2% I would stop there. I am at 18%.
Hi Brian, No there has been no one or nothing done for me. When my oncologist read the report on my bone marrow he was
very out front with me. No cure for what I have.. That being MDS-RAEB-2. Each MDS is different. Dont remember what your
father has. Some are more treatable then mine.
I have accepted what I have. I am an optimistic person, and say to everyone that at least I dont have time to get any of the really
terrible long term diseases such as MS, Parkinson’s, all the rest of the cancer that can linger for years.
I do have a choice and need to decide in next few months. That is do I want to try a Clinical trial at a Chicago University..Not sure,
because they have to monitor my kidney, liver functions so the potential cure will not kill me first.
Hello Brian, Well not much positive to say on this disease. I am 75 and have MDS RAEB-2 with blasts of 18%
I was diagnosed with it Sep 2015. Been through 6 months of Vidaza. Bone marrow shows not sigh that it helped
and during chemo my CBC count was very low. Now that am not on Vidaza last 6 weeks it has gone up to what it was last Sep as well. I went to University of Chicago also for a second opinion. I was given 1-2 years at that time.
How much left? We dont know. Now I hear the Northwestern Hospital has a Clinical trial I may be eligable for,
but that will mean a forth Bone marrow biopsy, and many tirps to Downtown Chicago. That is an hour and half each
way by train, and bus/taxi.. will it help me live longer??? Or should one just say no, let me be. I saw my
father die from this 30 years ago. They had no Chemo for it then.. perhaps your dad and I will live long enough
to see a cure of sorts.
Best wishes, Richard.
Hello Diane, I too have a wife with your name, and I too have MDS. I am 75. I have been on Warfarin for over 10 years. I was wondering the same as you. However I also was exposed to many chemicals in my job as mechanic that may have caused this. My father was 78 when he died of the same thing I have. They called it Pre Leukemia 30 years ago. I am sorry for your loss Diane. I would like to ask you just what was it that he died from?
I understand that it will be an infection of some sort.
Best wishes to you and family.
I am almost finished with my 6th cycle of Vidaza injections. Only real bother is the sore arms and belly at injection sites. A little nausea at times, other then that I have been lucky I am guessing. I will get my third bone marrow biopsy done in a few weeks to see if this is working. I was 16-18% blasts in September. What to do if I have gotten worse? I was given 1-2 years six months ago. Oncologist says he hope to give me a year or so more with the Vidaza. WBC-2.2, GRA-1.0, RBC-3.16, PLT-156 on last CBC. Best wishes to all..
Hello Dion, What drug you taking? Injections, or infusion.. I think Nausea will get better for you..Mine is almost non existant at cycle 5. Constipation 2 weeks out of the month is most problem I have. Good Luck.
Hi YQ—I too am 74 and am going into Cycle 6 with Vidaza. Only side effects for me is 2 weeks of constipation, and a little nausea. I have had a lot of pimples on my back at cycle 2-3, but not much now. I get my Vidaza in the shot form. 2 shots each day for 9 days. I had 16-18% blasts in my bone marrow in Oct. That is high. Only
real negative thing is my WBC are low, and I need to get them up so I can go to dentist. Wish your dad the best.
Thank You Richard M. I wish you have a pleasant journey as well. We all have that road in life that has
some detours and they all have an end. I dont mind the end of the road but how we get to it in some comfort.
Hello rar– I read your message from Jan 10 and nurses thought you may die during your ordeal.. This is not
a life I want to live. I am in fairly good health, but have COPD. My Oncologist could not believe the test results because I looked so healthy. I kinda made a decision to have quality and not quantity of life.
I have neighbor that is 56 and had transplant. Same thing. He went through hell, and is at 2 years with continued problems with his body rejecting the transplant stem cells.
I wish you continued good health, and same to all on this wonderful web site.
I was told that because of my age, 75 I was too old for transplant. University talked about it, but I would probably not survive that ordeal.