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ParticipantHi,
shortly after beeing diagnosed with MDS 7 years ago, Vitamin D was the first "drug" I was prescribed. My hemo at that time told me we would start with a high dosis and try for about six weeks. In the leaflet of the Vitamin D package, there was marked sth about a potential effect to raise the erythrocytes…anyway it did not with me. This is my experience with Vitamin D. Good luck, maybe the effectiveness will continue!Participant"…..but I know I can’t go by statistics because everyone is different."
One of the key sentence of your first post !!!
Seems that the pre-transplant process is going to start very soon. Hope they’ll find a match very soon.
Warm regards, B.
ParticipantHi Itchy,
I am not from your place, but what I have heard is that MD Anderson is well-reputed. You are right with 18% blasts chemo&SCT is the cure option. All the best to you. I was diagnosed with MDS at 49 either, I am 56 now and still going strong 😉
BergitParticipantHi
Nutrition suggestions are not so very important, nor efficient, unfortunately. Eat healthy and well-balanced, that’s all you can do. There is no special diet or so to keep or even push up the hemoglobin level. In case you are transfusion dependant avoid food with too much iron. But also this actually does not make a real difference.
To get educated in disease implications, go to http://www.mdsbeacon.com There are a lot articles and informations in lay language.
ParticipantHi wifey, I feel very sorry about your frustration and there are certainly many different answers to this. I am a MDS-patient myself, but I know that it is a great burden to cope with all the challenges as a caregiver. The co-morbidities your husband has are weird and obviously your husband suffers from pain and unease. This is hard for him and so hard for you to see that. BUT you mentioned Vidaza, and it ist very much possible that this MDS-drug will make the situation much better. Because if it helps, it will help a lot and it will help him for a while.
So my first wish for you is that Vidaza will kick in.
Still you have the option of a SZT, which may lead to a cure.
Try to make only one step at a time. There is hope.
Warm regards, BergitParticipantDear all,
I was a friend of Bob and we knew each other through MDS.
I thought, you all knew already, because nobody had posted after april so far. But since there is a new post, I think I should tell you that Bob passed away at the end of April from his second chemotherapy. I am still very sad, I lost a dear friend.
You can read some meomorial remarks and see some photos on the website of the MDSF, you only have to go to the homepage.
Regards, BergitParticipantHi Fotis,
I see in your profile that your mother was diagnosed in the same year as myself. You are right assuming that there are some cases of long-time-survivors, normally with low-risk MDS. And it is true that they are just lucky and do not do anything special to deserve or achieve this luck…Unfortunately those are only single cases.
Most of us have to face disease progression over the years. No use to deny it. All the best for your mom.ParticipantHi Kathy,
20 years are a long time, congratulations for your and your husband’s spirit of mind…I think you are lucky and you behave in the right way. Do not focus too much on the numbers and be in the watch&wait. I wish you many more lucky years together.
My name is Bergit, 56, I am from Germany, and I have been suffering form MDS more than 7 years. I have tried several therapies, but nothing had really helped me. I am transfusion-dependent and unfortunately due to my fatigue I had to stop working two years ago..all the best, BergitParticipantI am so grateful for your answer and for the story of your husband, Mary ! Very encouraging!
My doctors have always pointed out that I am a rather perfect candidate for an SCT and – as soon as there will be blasts…
-or my whites would decline dramatically…
– or there would be an additional chromosomical aberration…
they would transplant right away.
I am so lucky to have my brother as a perfect match.As long as it is "ONLY TRANSFUSIONS" (although 15-18 days) they think (this includes first, second and even third opinion)the risk of a transplant is higher than living on transfusions.
I wish you well, Sally,
BergitHI to Bob Weinberg !!
I am not sure, but I think to have read that blood banks can prevent your organism from building antibodies against the donor’s blood by further tests etc. So that you get blood only from donors who are better matches for you.
Takes more time staying in hospital until all the investigation and work are done. But finally you’ll be fine and the transfusion frequency may become less often.
I hope so much that there will be a solution for your serious problem. Cya, BergitParticipantHi,
I am from Germany. I have been suffering from MDS for 5,5 years and I am transfusion dependant every 18 days in average.I do not understand, why your spleen had been removed? Was it too large and did not work well anymore because of the malfunctioning red cells? Never heard the spleen being taken out thinking the transfusion frequency would diminuish ?
If your iron-overload is under control – as you wrote – you can spend many more years that way.
Unfortunately many blood-transfusions makes a BMT more risky, that’s what you read and the physicians say.Last week I got my 101st tx. How many have you had so far?
Curious to know.
Bye, BergitParticipanthi Kitty,
I am not exactly around your area. In fact far away in Germany.
Although I’d be very interested in your case because of the trisomy 8, which is also my chromosomical abnormity…
Greetings, BergitParticipantHi,
I have been a MDS-patient IN GERMANY for four years now. I am afraid the representer, you listened to, did not differentiate enough.
I am trisomy 8 and do require RBC transfusions all 14 days in the meanwhile (I had intervalls of 6-8 weeks in the beginning). My MDS-specialists and my hemo gave me EPO and Valproic acid and now I am heading a study with a new drug, not yet approved….,
as you see, FIRST they try every other therapy, BEFORE I get the transplant recommendation.
I do not have blasts yet and my wbc and plts are mostly still in the normal range, I am "only" having this severe anemia and the chromosome aberration…I am supposed to be an INT. 1 patient.
This means watch&wait and try some drugs to gain life time and to keep QOL.I know a lot of German and European MDS-patiens, since being active in a forum.
Only high-risk MDS-patients are being transplanted, never low risks and INT. 1…You get the SCT only "at the point of no return", means: increasing blasts, obvious detoriation of the chromosome status, increasing infections and bleedings….
In Germany there is still a mortality rate of 20% ( and a probability of 40%(!) to get a relapse). Although I would grant that we have high standard in our SCT-programs…and constantly there is a lot of serious research around.
I would be interested to know more of the surroundings of SCT in the States,
bye, BergitParticipantHi Cathie,
with the two systems of HGB it is as simple as that, just put a point in between…
96 makes 9.6 etc.
I have been receiving my 24th transfusion so far last thursday with an hgb of 8.8.
Good luck, Bergit from GermanyParticipantHi, I am Bergit from Germany, just attended the European MDS-Forum im March with MDS-experts from GB (Dr. Bowen) and Italy (Dr. Santini). The forum was organiszed by the MDS-Foundation (europeam branch is localized in London) and the Forum took place in Germany.
I profited a lot.
In the subline you can see my MDS-career so far…
Greetings to everybody, BergitParticipantHi Sandhya,
I heard my hemo discussing a similar case on the phone – and I asked him afterwards to explain, because it also happened to me twice. I came in with 8,5 and my hgb was only 9,5 after the tx.Answer for you: Your father’s blood may build some antibodies against the spender’s blood.
Good luck, Bergit
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