MDS and remission

[Dennis]

Someone asked about MDS and remission — so let’s talk about that. Is anyone here in a state that has been called remission? If so, what did you do to get there? Are you still taking that treatment, or just on some kind of followup? What are your expectations?

Thanks.

Dennis

[SusanJ]

Sadly Dennis, it seems that no one has experienced a “remission”. My dad just has in his mind that this is something that can be fixed if he tries hard enough. Maybe I should have that approach. What could it hurt? I have been so negative through this, maybe if I take a more positive view, we will have a miracle.

[Dennis]

Give a little more time — it takes a while for everyone to see a message.

I’m sure there’s some good ideas out there.

[Engel]

Dennis,
You have been my shining light, when I read your posts, I get hope. We have had a really rough time.My husband 69 was dx in Jan.06 with RARS, he had a BMB yesterday and he has had a fever all day and is hurting , is this common? We think that his disease has progressed some since nothing has helped. One step forward and two back.
Thank you for being on this forum. Gloria

[SusanJ]

Dennis,

I feel the same way. You seem to have a very positive attitude. Gloria, I will put you and your husband on my prayer list. God will take care of all of us.

[Suzanne]

Dennis, I am officially “in Remission”! And there are others on the forum who are-not many but some. You can see from my signature line what I did to get there. Two rounds of heavy chemo and a year on a trial of Zarnestra hopefully to get through the period when relapse was most likely and catch any bad cells that chemo might have missed and prevent them cloneing or whatever. It has been 2 1/2 years since they announced I was in remission with the 1st round of chemo. At first I just figured I was buying time and either the MDS or the AML would come roaring back any minute. They told me that the more time that passed in remission the better chance I had( For extended time I think since there is not supposed to be a cure other then a transplant) –so I am beginning to have a little hope that we might have beaten this thing at least for a significant period of time. Today I can say I feel like my old self. I did not realize until I began to feel that way how many small effects there were from the diseases and/or the drugs.I don’t think about it all the time any more and I don’t think of myself as a sick person who temporarily feels ok. I am back living life in an ordinary way-but with a special understanding and appreciation for every day, how lucky I am and an awareness that it isn’t forever and that trouble can come with little warning like a truck without lights!True for everybody whether they have an illness or not but most don’t think about it.

[lynette]

Suzanne,
Beautifully said!! My Mom is in remission as well. I must say, that while we are thankful, every day is colored by the fear that today is the day that the leukemic cells will begin to grow again. I take comfort in your case because although my Mom went a different route to achieve remission, the docs told us that the average period of remission was the same as traditional chemo. Reading your post gives me hope!!
Lynette

[Suzanne]

I had Ara-c in both chemo rounds and VP-16 in one so your mom and I have some similarities in treatment. I had Daunorubicin but no trisenox. Tell you mom I am thinking about her wishing her well and looking at the world through very similiar eyes. I too know that feeling when you see a bruise, feel tired or those counts drop just a little bit on a CBC. They have now put several months between blood checks for me-That makes it easier not to worry.

[patti]

Suzanne and Lynette,

Your stories have got to give hope to so many people here. Especially when it seems we hear so little about someone going into remission. I’m sure it was a long road getting there physically but what a blessing that you’re (your mom, Lynette) doing so well! Cheers to both of you!

Best wishes,

patti

[Naomi]

Dennis:
I am in “remission” also. I am on revlimid and have been on it since 11/03. I have not had a tx since 12/08/03. I was getting them every 7 to 10 days before I started the revlimid. My white, red and platelets are all lower then normal, but fairly stable. My hbg and hct are both in the normal range. Was doing phlebotomy for iron overload, but my port sort of acted up. It was removed and I have started exjade. I shudder every time I take it. I do not like it, it tastes horrible and I will not ruin my oj with it. I have once again started phlebotomy through the arm.
I was just diagnosed with c-diff. Thought all the diarrhea was from adding the exjade, but found out differently. If it is not one thing it is another, so I just keep plugging along, living one day at a time, as it is about the only thing you can do with this dreaded disease
Naomi

[pierre]

I logged into the forum tonight thinking I was going to start a separate thread, but given the subject of this one, I think it’s as good a place as any to share the news with everyone that today we learned that my mother is in complete remission from her MDS-AML after two rounds of ara-C/arsenic at New York Presbyterian–in other words it ended up working just as it did for Lynette’s mom, whose remission was one of the initial reasons I advised my mother to sign up for the arsenic clinical trial in the first place. What better proof could there be of the incredible usefulness of this board and of its members?

We are of course extremely grateful to the doctors and very aware of our good fortune. Many thanks to Lynette, Suzanne and all the others who showed such kindness when I came here looking for information and reassurance. You may not realize it, but you have made a real difference in our lives.

We don’t have all that much time to celebrate though, since we already have to come up with a decision about the next phase of treatment (consolidation; then mini-transplant or maintenance chemo?), but regardless–today is a day of hope.

[Suzanne]

I am meeting a friend tonight that I met probably through this forum-I’ve forgotten-She had treatment for secondary MDS ( breast cancer treatment)she had full chemo and a really rough time at Hopkins. I was on the Zarnestra trial and being checked often at that point and went upstairs to visit with herduring her chemo stay while I waited for my CBC results. She too is in remission and for an even higher risk disease. I know part of her expectation is to be around while her young daughter grows up. She is also doing a lot for awareness work and fund raising for both breast cancer and our disease. I will tell you more after I see her tonight at the talk our Docs are giving at Hopkins re developments in treatments. We will be trying to find each other witha few more pounds & hair instead of a scarf or wig!

[lynette]

Pierre,
Congratulations!!! I know the happiness that you must feel today. I am so glad to hear of your Mother’s remission. My Mom chose the maintenance route. So far, she is doing very well. Good luck with your decision, and celebrate the good news!
Lynette

[patti]

Dennis,

This was a good thread to start! I think people need hope that remission is possible regardless of what route they take for treatment.

Pierre, congrats! What a blessing. I agree with you that this list is such a support when trying to make decisions about treatment.

Best wishes,

patti

[Engel]

Suzanne, I read your post where you are no in remission. My husband was dx in 01/06 with RARS and today 5/12/06 after another BMB he is AML and we are completly lost and I would appriciate anything you can tell me. He is in the hospital low RBC and Plat, getting both this evening and tomorrow they want to get him ready for Chemo this has all happened so fast and I feel so lost.thank for any advice at all. Gloria

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