MDS and remission

[Suzanne]

Gloria. Same thing happened to me -sudenly AML and the chemo wasn’t exactly pleasant but not nearly as bad as I espected. they kept everything under contrrol and luckily even tho I was supposed to have a type of MDs that was chemo resistant and AML coming from MDS is consideered to have a lower chance of success anyway-the forst round put me in complete remeiison. I went on to a second round of chemo and a year of a trial of Zarnestra to try to prevent relapse. Today, I seem to be healthy and no sign of either the MDS or the AML in my bone marrow tests. My counts are pretty normal and I am taking no medication. that is why I say the AML turned out to be the best thing that happened to me-Hang in there and I hope your husband has the same luck! By the way, I learned at the presentation on new research direction at Hopkins that the Tipifarnib that some of you have mentioned is Zarnestra-just another name.

[lucym]

Suzanne,
Can you let me know how long after you started your 1st round of chemo did the numbers start going up? Thursday 5/18 will be 14 days after Mom started 1st of 5 days of chemo. Today (12days) numbers still really low, diarrhea and she is very weak. Doctor’s are not willing to give time frame because every patient is different. Also what is remission exactly? Blasts lower than 5%? Was there any other information from the seminar at Hopkins?
Thanks Lucy

[Suzanne]

Don’t get discouraged. It felt like forever for those counts to start back up and there were a couple of “false starts” Once they really started they moved up pretty fast-but it seems to me it was about three seeks before they started. There was a marker I had to hit to go home and I went home at about 30 days on the first round. With the consolidation they were even slower to come up. I was afraid they weren’t going to come back. They let me out before I hit the markerthat time because my Dr. recommended letting me go home and come in every day as an outpatient. I was getting really “stir crazy”
Hopkins wanted a “clean bone Marrow” (they told me the best was nothing showing at all after the chemo and no sign of the chromosome abnormalities. Then they wanted no sign of either the MDS or AML in the new cells that came back. My understanding is that both types of cells have abnomalities that they can see in the smear. They have not mentioned what % they see of blasts since I went into remission and I see nothing about that on my bone marrow test results. The only thing I can figure is that what they do see are normal and will mature or kill themselves just as they are supposed to when the marrow is functioning correctly.
Hopkins was very interesting. I will start a new subject line with what I learned there when I have time to look at the material again.

[lucym]

Thanks Suzanne,
Can you or anyone tell me about your tx during chemo? My Mom has always had plt issues, yesterday she had 5 plt tx and this morning her plt count is still at 1. Her HGB dropped from 9 to 5 in 24hours (yesterday she passed out and had a slight sezure) after 4 red blood tx her hgb is at 10 this morning. I am very concerned that the tx are not sticking even for a short time. Any information you can share would be great.

[Engel]

lucym, My husband started chemo on the 14 of May he was dx with MDS in Jan. 2006 quickly turned to AML on May 12, he is in the hospital, did well the first two treatments now low plt count hgb is holding has bad sweats at night and high fever. Any information will be greatly appreciated.
Gloria

husband AML as of 05/014/06 on chemo right now.

[franm]

Lucym, My husband is starting Vidaza today and he is suppose to have it for 7 days straight. He had a BMB 1 week ago and his blast was 29. He also had a blood test, which we won’t know the numbers until tomorrow when we see the Onc. She called us last Friday and said the Jim should start Chemo right away. I have been scared because he had a trible by-pass surgery 2 years ago and has a bad heart now.

Any information would be very helpful.
Husband is 73 and not in great condition.

Fran

[SusanJ]

Fran,

I will pray for you and Jim. Please keep me informed on how he does with Vidaza. My dad’s doctor has suggested Vidaza treatments. My dad is also 73 and he has a pacemaker and congestive heart failure. His last bone marrow biopsy showed 6% blasts. The Aranesp shots that he has been getting haven’t helped his blood counts at all. I am worried about how Vidaza might affect his heart. God bless!

Susan

[lucym]

Engel & Fran M,
My Mom handled the actual Chemo transfusions (ARA-C (5 days )and something else (1 Day). She was eating and feeling weak but OK. Then on 12th day she started with severe diarreha that made her even weaker and not wanting to eat. We have had about 3 days of that, but today she is feeling a tiny bit better, eating a tiny bit. They are giving her red blood and plt tx almost constantly. I am going back to the hospital tonight and will let you know any count information or anything else I find. It is very scary but I keep telling myself and my Mom it will get better (it has too!)
Thanks Lucy

[franm]

Susan:
My husband has a bad heart and I was really worried about the Vidaza; but he had the shots today and they gave him a pill before. As far as I know he feels OK. right now we just came home and he is sleeping. I have no idea if he will sleep through the night or not. He will see the Oncologist tomorrow morning and then we will know more regarding his blood test and BMB. I hope!!!
Jim will be taking the Vidaza every day for 7 days and then a 2 week rest and start again for 6 cycles.

I hope that will put him in remission…I hope so.

God bless and I hope that your Dad does well on the Vidaza also.

Fran

[Suzanne]

you know I don’t remember what my counts were during chemo -only that they took things down to zero and kept my RBC and platelets at a safe level with transfusions until my own counts came back to a certain level.

[Engel]

lucym,
How is your Mom doing. My husband finished his chemo last night he started on Sunday, sofar no bad sight effects, he is very optimistic and hopeful, I on the other hand worry all the time. The took a chest exray this morning and he received one unit of blood this afternoon. I spend 8 hours at the hospital and when I get home I am tired but still having problem sleeping. I know that the effects of chemo will still come, keep in touch. Gloria

[lucym]

Gloria,
For the past 2 days my Mom has been receiving plt tx round the clock. She had to have her PICC line changed so they needed to make sure they got her count up, today it was 58, she also received many red blood transfusions and today her HGB was up to 14.5. She is feeling well and the diarreha is subsiding. When we arrived at the hospital her blasts in her blood were 26, last test showed 2. Of course the WBC is still very low 0.3 but we are working on that too. I hope and pray your husband will have an easy time. Be sure to take care of yourself. Your husband will be sleeping alot over the next few days be sure to get some rest too. Try to get him to keep eating small meals to keep his energy up and help flush out the toxins.
Lucy

[Author]

Posts