Myelodysplasia Support Group

The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified within the hematological neoplasms.

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myelodysplasia intermediate stage help

My father was diagnosed with MDS 4 months ago - he has been in and out of the hospital with infections, fevers etc..

The doctors think he is in the intermediate stage and says that the treatments only help prolong life for about 9 months.

We feel so in the dark - I would love to know of anyone that is dealing with the same thing. Any treatments they have had and how long they have had this for.





Dear Mancusolucia,
I suggest that you consider getting a second opinion from another oncologist. There are several kinds of myelodysplasia, and they appear to progress at different speeds in different people.
The first oncologist I went to was a generalist in the oncology world, and wanted to take a "wait and watch" approach. I told him that I would like a second opinion, and would consider a clinical trial. He actually helped me get in to another doctor for a second opinion. The second doctor was much younger, specialized in blood cancers, was really up on the latest treatments, and is much more aggressive in his treatment protocols, which was what i wanted.
I am now a 5 year survivor, with 4-1/2 years transfusion free.
You might also consider going to a MDS or Leukemia/Lymphoma support group if there is one in your area. People there often know of other doctors who might at least be more communicative, so you don't feel lost in the dark.
Best of luck to you!

I started with MDS, when in hospital at the end of August, the usual pre-operative blood test showed a placelet level of 66. The operation was cancelled, and I went to Pathology in Worthing for a Bone Marrow Biopsy.

Since then my platelet count has dropped to 48, and hemoglobin to 10.2, so I am currently a bit away from the need for weekly transfusions.
Three weeks ago I went back to hospital for the operation, was given a platelet transfusion on the morning of the operation, and just when it was complete, their junior Doctor came to tell me that there was no bed in the High Dependancy Unit, and in view of the danger of infection they could not operate.

Tuesday of this week at Henotology the Consultant suggested that I might like a referral to Kings College Hospital in London, where Professor Ghulam Mufti runs a department said to be "a centre of excellence" There are two others in Dundee and Bournemouth. KCL have two drugs on test, and no other hospital apparently has them. I will require a Cromosone test, which means another Bone Marrow Biopsy ( I hated the first even though I had sedation) but will have it, as it will be required by KCL.
I do not know when my appointmnet will be, or whether I will be accepted as a Guinea Pig, but I will go for it if at all possible, as long as the side effects are not too ghastly to bear.
At present I am at "Intermediate Risk, Grade 2, and I am told suffer from Refractory Anaemia with excess blasts.
Median survival is said to be 1.2 years, which I calculate as 1 year, 10 weeks and 2 days and 2 hours and 24 minutes, but I reckon these numbers are just there to get down the spirit of the weakest, and I am determined to survive as long as I can. I do not fear death, but am just a little worried that I may not be able to do all the things I want to do in my lifetime, though nobody (not even my wife and children know what those things are,) and I am making them up, and adding to the list as I go along.
So advice to Mancusolucia is to get to one of the three centres of excellence at KCL, Dundee or Bournemouth for a second opinion. This does not seem to me to be the job of an oncologist, but I say that as I always see, (now every 4 weeks) the Consultants at Worthings Haematology Department. I will keep you posted when there are any developments.
I suspect that one of the problems is that there are not too many of us who suffer from MDS, there are different stages and different types, and science has yet to find effective answers to MDS. In the USA I am told they use a very very weak dosage of Chemotheraphy, though this rarely happens in the UK.
I am on no medication or treatment at present, and to be fair feel fine though I need a daily Siesta, (generally when a TV programme I want to see is one, which I watch and doze off) I have no solutions other than my Faith, my local Rector, my wife and children and my very strong desire to survive and enjoy life. I fear becoming depressed as this would be a death in itself.
Good luck Mancusolucia, keep us posted and good luck to all others out there.
p.s. Shall we start a campaign to convince the PM and his tame Chancellor to allocate extra money to finding a solution for all of us? How many could we muster in this country if we decided to have a march down Whitehall?
Its an idea, and getting the organisation done could keep some of us interested in life.
Happy Christmas to all and love from a fellow member.
If anyone out there lives in West Sussex, a meet would be lovely.

My dad was diagnosed a few years ago and I know it's not easy to watch someone go through this. We too were told that the treatments were not a cure but they could prolong his life - maybe 1 to 2 years. Its now 5 years later. He is now getting weaker and I am starting to have to deal with saying goodbye to him soon, so I understand about feeling like you are in the dark. He has had revlimid, transfusions, procrit and other therapies that did help for awhile. I think the hardest thing for him has been the fatigue. Try not to pay attentionto the "9 months". My dad has lasted more than twice as long as the doctors thought. Also try to get some support for him. One of the issues my father has had is depression from isolation. Find people that can go visit him on a regular basis. HAng in there!!

Dear Mancusolucia,

I am at Intermediate stage 2, Refractory Anaemia with excess blasts. The blast level is 7%. I have been diagnosed after my second Bone Marrow Biopsy as having a Trinomy 8, which means in effect that I have an extra Cromosone 8. Sounds odd, even awful, and this particular variation can lead to to Myloid Leukaemia. But not yet!

My platelets, white blood cells and red blood cell counts have been level or risen slightly over the last 4 months, so I no longer believe the 1.2 years of life expectancy diagnosed in September 2008.

I have been offered Cytarabine, which is Chemo, every day for 14 days followed by 2 to 3 weeks, before the next 14 days treatment, as during the chemo all counts will go down and they need to be given the chance to rise up again. I have agreed with my Haematologist that I will not start treatment as yet, or at least not unless my counts start dropping much lower.

Yes from time to time I am tired, thats the anaemia, and I slip off into a sleep siting in front of a TV watching my favourite programme and wake up when something is on that I hate to watch.

So here I am. almost 8 months after initial diagnosis, and really doing fine. No guarantees about tomorrow, next week, next month or next year, but I am determined to continue to enjoy my life.

It seems that MDS, which has many variants affects all of us in different ways, and I can only say that hope and prayer is the best guarantee anyone can offer.
So good luck.

HI my dad is also he started getting transfusions about one a month or so know in the last couple months he has been hospitalized and is having transfusions once a weak the problem is there blood is so low that it effects the immune system so they always get sick. im at my wits end also it is rough. And he has been to and had second opinions there is no cure my dad i belive know is at full blown lukemia.

Dear Ariesnv,

I wish your Father and you the very best of luck. I am having my periodic blood test on Thursday 11th June,and I hope that if the counts have not got worse, that the Haematology Consultant will agree that I do not have a transfusion on June 13th. I just do not want to start transfusions, as it seems to me like a step into worse territory.

I feel very well, at present, and have managed over a period of 5 days not to have a siesta sometime during the day, in spite of being very active in beautiful weather, by the sea in my favourite seaside town.

So I am keeping my fingers crossed, and I will cross the fingers on my other hand for your Father, and hope that the transfusions will put up his blood counts and they can be abandoned.
Good Luck.
Christopher (Chrisjb)
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