[Suzanne]

I don’t think it is new. It has been in trials for quite a while. I believe they were trying for an early approval and got it partially approved as an orphan drug as mentioned. According to some vague notes I have it is closely related to Vidaza( 5-Azacytidine)

[Suzanne]

Susan, My 5q- chromosome change was given the same interpretation-made me much higher risk. I think it is wise to be prepared and still not give up hope.And I know that must be a hard thing to do. You can see from the replies we are all so different even with what look like similiar diseases-They don’t know why and they really can not forecast what is going to happen-just give you an educated guess about what is likely.

[Suzanne]

I second that-the break for me came only after I progressed to AML and had the full chemo treatments that put me into remission. I often say the best thing that happened for me once I was diagnosed was progressing to AML. Before that nothing worked and I was in real danger of getting in trouble with infection.

[Suzanne]

Guess I am wonderiong why you aren’t considering heavy chemo-induction and consolidation- to try to get him into remission. I haven’t kept up with everything recently but I was under the impression most of the trials were for the disease prior to moving into AML. The only one I know of for AML is Zarnestra in place of chemo for patients that are usually older then Mike and for one health reason or another can’t deal with the chemo regimen.

[Suzanne]

Ditto. Sure hope if they ever do give up on this they warn us and set up an alternative. It is more important then that favorite TV show we hate to miss.

[Suzanne]

Phyllis, Hang in there. I once walked a road very similiar and am happily looking back after the drugs were successful in treating my AML. Sure hope the same happens for Ron. I too was in the hospital for 30 days- twice- and I was so glad. I seemed to have a lot less problems with them watching me so closely and taking care of everything that came up very quickly until my counts were headed back to a safe range then those that were sent home or to interim living & out patient care.That doesn’t mean I wasn’t super glad to get out and go home to my own bed! I am sending positive thoughts for much success and few problems for Ron.

[Suzanne]

They don’t talk about any treatments now. guess they like me are in thw wait to see what is available and best for my case if/when we have to deal with a relapse. So much new is happening all the time. I found revlimid in my notes talking about alternatives-but back when I was looking at treatments, there were no approved treatments and Revlimid was in trials and they were not running a trial for it a Hopkins at that time. so much has changed inwhat really is a short time.

[Suzanne]

I have my fingers crossed for you Mom also.

My case was/is “primary” I never had treatment for much of anything before. Yes 5q- was my only chromosone change.I was also Hypoplastic although they never mentioned that as being a factor in any treatment decisions. So much has been developed so quickly, they may have better alternatives for induction now. I had two rounds. Ara-c, Daunorubicin, & Etoposide the firt time-a 30 day rest and then Ara’c and I believe Daunorubicin again. I went into remission with the first round. Then they had me rest for about a month and put me in the experimental drug trial for Zarnestra for a year to try to cover the period that relapse was most likely.

As far as the transplant, there were several factors. I live alone and would have had to make a lot of changes to deal with the usual recovery difficulties with a transplant. My one sister was not a match. My docs would have put a lot of pressure on me if she had been-for a full transplant. I did not like the success statistics or the changes to quality of life I was hearing about at that time. And for me the statistics for success with the drug programs were about the same as the transplant. Although they still said that a transplant was the only way to be “cured”. In reality my “gut feeling” was not to go down that road. My dicision was to emphasize quality in whatever time I had and still fight as stong a battle as possible under that premise.
So far it has turned out to be the right decision for me personally-luckily. But the fact that my case was not secondary makes a big difference from what I read. And there have been a lot of developments in the transplant process-so my reasons over two years ago might not be valid today. They did tell me that they would talk about the mini if I ran out of alternatives, and they mentioned trying it with one of my children-as a partial match.(those were pretty far out alternatives to try-sort of “last ditch” ) But at that time Hopkins did not really recommend anything but a full match with a related donor

[Suzanne]

The time on my message has the Am and Pm reversed so maybe that answers it. I posted the above message at 7:59 AM this morning! I am posted this one at 7:48Pm. So much for the thoughts of so many staying up all night. !

[Suzanne]

My impression is that John’s Hopkins is open minded about such things. I think they even have an office or department of alternative treatments. I know they don’t know for sure that anything works in that vein. They only mentioned to me exercise and very healthy eating, and care of myself, and positive attitute. I always kept all treatment-drugs etc- at the minimum of what was necessary and I never did any of the alternatives just because I wanted them to have a totally clear picture of how my body was reacting to treatments they were doing. Luckily from the beginning my own body seemed to want to fight & win if it was just given enough of a chance. I hope it stays that way. I will ask if I get a chance. I know my nurse practitioner leans towards natural remedies and will answer an emailed question.

[Suzanne]

I have noticed a pattern that it is often the men who find the process more painful and the women who find it no fun but bearable-Have wondered if there is something different about the hip bone structure between the sexes.

[Suzanne]

Don’t know what zone the Forum is using for time. Guess it depends on that and where the poster is in the world. It makes sense that most post in the evening where ever they are.

[Suzanne]

I believe so . Call Laura Bakis at 443-287-2541 to register. Thursday May 11 5:30-8Pm at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins -Weinberg Auditorium. All the doctors but one that are presenting were involved in treating me and I probably saw him on rounds in the hospital. Topic is New Horizons: Treatment and Advances for Myelodysplastic Syndrome and Acute Myelogenous Leukemia. Light dinner provided, complimentary parking provided in the underground garage .

[Suzanne]

Viv,They are different for different people and some people are better at doing them then others. I have had something likie 16 BMB’s. Most I did with just the local anesthetic-They numbed the area. For me they were not awful. The pain they talk about is a little like a quick electric shock and after so many my nurse practitioner took pity and started me on the easy way. Now I take 10 mg of ativan (oral) and 10 of Oxy codone about 45 min before they do the test and I sort of float and chatter through-being relaxed helps. I have never had much discomfort afterwards-maybe once or twice I took a tylenol. The premedication makes me sleepy-they don’t want you to drive if you take it and I usually take a long nap-much relieved that the whole thing is over.

[Suzanne]

Yes, mine went down. Started with white cells and in the end all three lines-white, red and platelets. My understanding is that all the diseases except CML and CMML envolve the lines going down. That does not prevent the “blasts” going up. Like Neil said they are immature cells.I believe ther can be healthy immature cells that are going to mature-why under 5% can be OK. As it was explained to me the blasts they are measuring are the cells that are defective and will not mature. They can be present in the marrow and out in the blood. And as they increase they are cloning themselves and eventually “clog” up the marrow so it cannot function. With me they considered 20% leukemic. I moved from 20% to 75% pretty quickly. A confusing point is that they have told me that when they do a BMB they are looking for two distinctly different types of cells MDS and Leukemia. They always talk about them as two diseases. I know from the talks I have gone to that the distinction re when one has progressed to leukemia from MDS is a gray area.
I will be going to a lecture at Hopkins May 11 with all the Doctors I was envolved in presenting on treatment updates and new developments for both MDS and AML.

[Author]

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