Trisenox

[Bob P]

Hi All,
As most of you know MDS is a very individual disease. The drugs that are used are also individualized. That is what works for one does not work for all. I had an 8-month treatment with Vidaza and other then a roller coaster ride of my counts each month I saw no improvement.
Last week I had my first try with Trisenox. On 1/25/05 I received a TX of two units of blood and one of platelets. On 1/26/05 I received my first loading dose of Trisenox. On 1/27/05 I had a CBC prior to my next loading dose. My HGB went down but even worse my platelet count went down to 1. I have never been that low. My fatigue level was very bad and I had that rash all over my tummy. My Doc sent me right to the hospital where I received 4 units of PRC (Packed red cells) as well as four units of individual donor units of platelets. I spent two days there getting that. On 1/31/04 I went back to my doctor and had a CBC. My HGB did come up to 7.9 but my platelets were only 4. (Platelets don’t last to long in the body). Needless to say this was not a good experience. My Doc will no longer treat me with Trisenox. My Doc now feels that the MDS has damaged far too much of my bone marrow for a chemo drug like that to work. I am now back on supportive care as needed. I’ll find out on 2/7/05 when I see my Doc again and have a CBC. I go from there.

Bob…

[Terri]

Bob, sorry that none of these drugs seem to have worked for you. I hope that your next CBC shows some better numbers. Are you supplementing at all with vitamins etc. I do believe this works and I have to think it is what has been helping my Bob in conjunction with the Conventional treatments. (Our doc had mentioned the Trisenox if the Vidaza did not work – your side effects scare the devil out of me)

Wishing you well always

[sarah]

Bob, sorry these drugs are not working for you.Sounds like you have had a difficult time. Hope you have a good CBC. Will keep you in our thoughts and prayers. Take it one day at a time.
Sarah

[Joannie]

HI Bob,

I am so sorry this did not work for you. I will pray your platelets go back up and you are feeling much better. Have they considered a mini transplant for you ever? Joan

[jascar]

Hi Naomi Carol completed 6 mo. trial at Moffit with Dr. List no improvement txs every 12/14 days.Now on cyclosporine 2plus mo. no improvement so far.Have started Desferal sub q pump delivery 3 times/wk.feritin level 4000.This is just another misery.New pill should be avilable this summer.This treatment may have to continue up to a year because of so many txs.Think of you often hope you are still tx free.

[geebeebee]

Bob, sorry to hear about all your problems. We’ll all be hoping for good results from your test, and continued best wishes.

Greg

[Bob P]

I 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…

[Joannie]

Bob,

I will be praying your CBC looks better on the 7th. Please let us know how you make out. All my best. Joan

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