Forum Replies Created
-
AuthorPosts
-
Bob P
MemberTo Ron & Barb,
I to want to join you with my thanks to Neil for all of his help and I salute him as well. We all have to be thankful to him for all the help he has given all of us on the forum. I’m very happy that someone put into words what we all feel.Bob…
MemberJohn in GR, & Tahoe,
I must thank you both for you little feud. This forum is always filled with blood counts and mostly unhappy things that are happening to people with this MDS. You two have given us a bit of a comic break.Bob…
MemberI want to thank you all for your kind thoughts and prayers.
Terri, No I’m not on any supplementing with any natural methods. Also, on the positive side of Trisenox. My doctor’s office is running a trial with it on other diseases as well. One is on a man with MDS. He has been on it for a little over a year and had been TX free for that time. I spoke with him and he had no side effects. It is worth a try.
Joannie, I did do a little research on the mini transplant. There isn’t much data yet to judge. One thing they have found is that it doesn’t work very well with MDS patients.
My Best to all,
Bob…MemberHi Ron,
I have been on Neupogen for a couple of years already. I do self inject. It has held up my WBC all along. I was taking 480mcg 3X a week but developed a lot of bone pain in my ankles so my doc reduced the dose to 300mcg. It worked but not quite as well.Bob…
MemberHi John,
I’m very sorry to hear of the sudden loss of your Brother. Those are the hardest to take and adjust to.I don’t always agree with your philosophy of treatment but I must complement you on your letter writing. You use words so well to describe your thoughts. If ever I needed an attorneys letter I would hope to find one who is as good as you in writing it.
Bob…
MemberHi Jocelyn,
Have the same situation. I to lost a great deal of weight that was not planned. December of last year I was about 220 lbs. Now January of ’05 I am down to 168 lbs. Y doctors just keep saying eat, eat, eat with no answer to the cause of the loss. I have noticed that when my counts are low my appetite goes with it. I just don’t want to eat. I also was on the Vidaza trial during that time. Perhaps that to was part of the reason for the weight loss. Now I am eating lots of rich food like ice cream, cakes, cream puffs, Ensure Plus etc. and I can’t seem to put on weight, at least it is not sticking but I am enjoying the food.Bob…
MemberHi Jim,
If you are a very FACT based person you personally will have a difficult time with this disease. It is different for each person. Each person responds differently to it. There are components of a couple of other myeloid diseases in each case. Sometimes even the specialists have a though time making a diagnosis. The treatments available also affect each person differently. Some times they work, sometimes only partially sometimes not at all and there is no answer why. As time passes the blood counts will go up and then down and up again. The disease is non-linear. The doctors have learned a lot about MDS these past few years but there is still a long way to go.Bob…
MemberHi,
That is a tough question to answer about how long to continue Vidaza treatment. Each of us with MDS is so different and the drug reacts differently to. For myself, I was told that if it does help I should see it between the 4th and 6th treatment. No improvement occurred. I continued on till the 8th treatment. There was no improvement in my marrow, or blood. BMB was the same. I just couldn’t take those swings any longer in my counts so I stopped it. I took the drug when it was still in trial as azacitidine with a specialist at Mt. Sinai. I was still getting weekly TX’s. The first month or so off the aza my counts went up and stayed there for a few weeks. NO, TX’s. Unfortunately it didn’t last but I must say I did feel really good for that time.Bob…
MemberHi Christina,
I to had some swings in my counts while on the Vidaza. My WBC went down to 0.6 and stayed there for the entire 8 months of treatment. The Doc gave me Cypro 500 mg 2x day to afford me some protection. My platelets a couple of times dropped as low as 3000. I received platelet transfusion during those times. My HGB went as low as 5.6 on a couple of occasions. Three units of blood were required at those times. After the 8 treatments it was decided that the Vidaza was not working for me and I got off the drug. The next month or so my counts really went up and I was feeling pretty good. It didn’t last all that long when they started to fall again. I am now TX dependent. I’m on neupogen and procrit. (I don’t think the procrit is doing much for me) I just spent from Jan 1 to Jan 8 in the hospital because of an additional virus infection. It really knocked me down. This MDS does effect almost every one differently as well as the Vidaza. This maybe what happened to you Dad to.The Best,
Bob…MemberHi Sarah J,
I’m very sorry you have reason to find this site. The best advice you can get from anyone on here is to go to a center of excellence to get an experienced hemodoc who has treated many MDS patients. There is a list of them from all over the country at another page on this site. Most local hemo’s may see only a handful of MDS patients during their whole practice. The specialist in most cases will work along with your doctor.
At the present time the benchmark cure for this disease is a full bone marrow transplant. A lot of trials and work with stem cell transplants are being done with good success and one day that might be the bench mark. The younger you are the better the results and the better you can tolerate a BMT. At 24 you should do very well. Only an expert can tell you that though.Bob….
-
AuthorPosts
