[Suzanne]

Hi Sandy, I am still here Just don’t say as much as I used to because there are so many new drugs and treatments since I went through it all. Things have changed a lot. When I was where youall are there were only 2 options once it went into AML(I had 75% blasts and it had moved from 19% to that very quickly)I could go supportive care or the heavy chemo. I went the heavy chemo-one round of induction (they kept me in the hospital for a month and a second round about 30 days later of consolodation-this time in the hospital for more then a month. they did not let me out until my counts started coming back and hit a certain goal level. I went into remission with the 1st induction round I did not have a transplant. My sister was not a match & they did not want to use an unrelated doner at my age. I did take an experimental drug for a year with the hope that it might prevent relapse-It is hard to believe but it has been three years. I go this Friday for my semiannual BMB but my counts were checked a few weeks ago because I got some unusual infections from a cold and they are the best they have ever been-everything in normal range- so I am not too worried about the BMB results. This doesn’t happen often but it does happen. sometimes the fact that we are react differently is a good thing. Take one step at a time and make one decision at a time after weighing your options at each place. And always always go to a center of excellence if it is at all possible. Good luck to you.

[Suzanne]

When I was treated RAEB-T was RAEB “in transformation” Meaning moving towards AML as apposed to secondary MDS-from chemo for other cancers. They have since changed the terminology- I think they usually call it RAEB-2 now. But I believe that is still different then secondary -both T and 2 refer to how high the “risk factor” is-many times the # of blasts they are seeing. They did not do a whole lot of treatment for me either until I moved into AML.I tried one drug trial-at that time there were no approved treatments. There are more alternatives now but they are usually more successful with patients with specifis characteristics.Patients with RAEB have a high possibility of developing AML.

[Suzanne]

I had both and the chemo used to fight the AML put me in remission for both. They continue to check me for any signs of either disease returning. So far I have been lucky and there are no signs if either. My next bone marrow test to check is scheduled for Dec. Good luck to you, the best advice I can give is to go to a center of excellence. There are so many new developments-some approved but many still in the trial stage that are giving people a much better chance then we had just a few years ago!

[Suzanne]

whoops! Don’t know what happened to what I typed! It is 10 mil each of Ativan and Oxycodone

[Suzanne]

I have had a lot of these-more then15 I know. They use the local numbing injsection fot the site. some people are better at getting it numb then others Now they also give me 10 mil each of “float” right through-can’t drive myself of course and I take a long nap afterwards but my nurse practitioner says the two work together very well and being relaxed makes a bit difference. They can also a stronger drug that pretty much puts you out.

[Suzanne]

There are quite a few of us now that have lived several years after diagnosis-even some of us with the types of MDS that have a prognosis of living only months. There are even some with diabeties-Neil aren’t you diabetic?My guess is that Diabetes might go more with the typical age we get MDS then it does with the disease. Go to a center of excellence for MDS and take one step at a time.

[Suzanne]

I decided against a transplant before the results of my one sisters blood tests were back after visiting with a friend who had a transplant at the Hutch several years before,seeing what he was dealing with when his transplant was a success, reading the material I was given and found and seeing what transplant patients on the forum were going through. My Doc at Hopkins did say that if my sister had been a match he would have urged me. Luckily the final decision was made for me when she did not match. I live alone and the idea of having to go live with one of my children for a least a year,subjecting my grandchildren to a front row seat for a serious illness, dealing with all the side effects, and taking tons of medications for the rest of my life, provided I survived the process just did not feel like the right direction for me. They have made a lot of advances in the transplant process since I was making the decision-However it is still seldom an easy road with no quarantees. Things worked out for me-Not going for a tranplant does not necessarily mean giving up or settling for supportive care. I had the two rounds of heavy chemo and a year of experimental medication (all of which did not effect my quality of life too drastically- not that there weren’t a few problems with that road too) and I have stayed in remission so far. Living totally normally on my own in my own home-all counts within acceptable ranges and taking no medications other then a small dose of Lipitor started this year for high colesterol. I suspect it is normal to be really nervous about the process and family and friends certainly want to help support someone past fear. But if their “gut” tells them it isn’t the way they want to go-then I can tell you I was very glad that my family supported me in that decision. And made it as easy as possible for me to follow my instincts and deal with the disease on my own terms. We are all glad that I didn’t give up and that I had Doctors at a Center of Excellence that offered other alternatives.

[Suzanne]

As far as I know the only way to definitely diagnose or rule out MDS is with a bone marrow biopsy.I did not lose weight with either MDS or AML-Only when they stopped feeding me as part of my chemo treatment. If possible go to a center of excellence for a consultation or at least go to a hemo with lots of experience with MDS. If it can definitely be ruled out that will be one less thing for you to worry about.

[Suzanne]

another 2 cents worth-they made very sure I got the flu shot while I was fighting MDS and AML-I was high prority when there was a shortage. I had never gotten the shot before. Now I get it every year and I got the pneuumonia one too. If I have more problems with the disease I don’t want my body to have to fight anything extra that it does not have too. Because I had traveled to Africa before I was diagnosed I had all kinds of shots and boosters and I always felt that kept me safer then some when my immune system was weak. Guess there are always more then one opinion on everything.

[Suzanne]

So glad that drug may work for someone.the researchers have high hopes for it. I surely had very little problem taking it for a year to try to prevent relapse. And what a pleasure- a tiny tiny pill!

[Suzanne]

Contact the Aplastic Anemia & MDS International Foundation Po Box 613
Annapolis Md. 21404-0613 USA
800-747-2820.Or contact them through the internet.
the packet of informaion they send out on MDS at no cost was about the best over view of the diseases in language that is easy to understand that I found anywhere.

[Suzanne]

Naomi, You are one of the stars that keep the rest of us going. Hang in there. You have hopes and prayers from all I am sure.

[Suzanne]

Yes it is common. Hopefully she is seeing specislists in MDS at a center of excellence. I believer Dr List is in Florida but have forgotten where-Someone will know and post his info.

[Suzanne]

The products that people on the forum have recommended over the past couple of years are “ulcer Ease”, “Swish and Swallow”, and “Magic Mouthwash”

[Suzanne]

Oh Terry ! I am so happy for you. Who would have thought one of us would be low on Iron. Last I knew my body was still trying to get rid of excess from transfusions-wish I could send him some!

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