Diagnosed this week
March 5, 2005 at 2:35 pm #4466JenPMember
Hello everyone. I introduced myself last week before I was formally diagnosed with MDS. Just to remind you, my MDS is a result of having chemo as treatment for breast cancer 2 1/2 years ago. I finally got my diagnosis on Thurs. I have RAEB with no chromosome abnormalities, 10 – 15% blasts. My slides are now on their way to Dr. Gore at Johns Hopkins and I am most likely meeting with him sometime next week to discuss my treatment. Vidaza or BMT were mentioned as possible treatments, but won’t know anything for sure until I meet with Dr. Gore.
I’d really like to hear from anyone out there under the age of 50 that has been diagnosed with this. And I’d love to hear from all of you, no matter what age, with words of encouragement. I’m obviously really scared.
Thank you.March 5, 2005 at 3:45 pm #4467NeilMember
Sorry to learn about you diagnosis. Am certain the members of The Forum can provide some insight and help you to understand what is happening. I cant provide any personal experience on secondary MDS or RAEB, but have some thoughts that might help.
Dr Gore and Johns Hopkins have excellent reputations. You are fortunate to have them in your corner.
One of the goals you/they have will be to keep the blasts from increasing and from getting to the peripheral blood. You might ask about how they plan to accomplish those goals. Believe there are several options they will explain.
Your age is a distinct plus. At 39 you should have more going for you than older patients.
Having a solid background on MDS has been an advantage, at least in my case. If you wish I can e-mail some materials on the disease that help to develop a broad base of understanding. There is quite a bit on RAEB and some mention of the implications of secondary MDS.
You can reach me at: email@example.com if you wish the material. Much too long to put in a message.
There is a considerable amount of info you can find on the home page for this site. Don’t overlook them.March 5, 2005 at 4:43 pm #4468SuzanneMember
Jen, Good luck! You are about where I started off 2 & 1/2 years ago except that you have two advantages: you are a lot younger and I had a high risk chromosome change. However I had not had chemo for any other type of cancer so maybe we end up even in risk. Hopkins is a great place. Be prepared for maybe a little confusion and perhaps a feeling of being impersonal on your first visit. They do second opinions for people all over the world. But that all changes when you become a patient there. I have had wonderful care taking into consideration how I felt about risk and quality of life.They have always given me an explanation of all the alternatives at every stage of my disease and I truly feel we have made decisions together.So far things have gone very well for me.
The fascilities in the cancer clinic are wonderful and after talking to and visiting people that had chemo in a more or less local hospital, I am so glad I did not do that. The safty precautions for infection, staff knowledge, and ability to deal with any complications was much better at Hopkins. As I think I have told you before, I have met Dr. Gore several times when he was attending when I was in the hospital. In fact he was the first to suggest that I was a good candidate for the Zarnestra as a maintenance drug trial that I am just finiahing (and it is not his trial).
When I first went the first appointment was just an overview of the disease. Even tho my records were supposed to have been sent,they ran their own tests encluding a bone marrow biopsy before they discussed treatment optionsexcept in a very general way. Don’t know if that is always true but it was part of what made the first appointment frustrating. I was expecting instant answers about treatment.March 5, 2005 at 6:47 pm #4469JimbobMember
It is not wrong to be scared; this is a serious diseade but don’t let it make you walk in gloom. A positive outlook is almost as important as what treatment you get.
Otherr who have had similar experiences will be betterr able to empathise with you and to give you helpful information but we are all here for your support.
JimMarch 5, 2005 at 7:59 pm #4470sarahMember
Jennifer, welcome to forum. You will find alot of support and information on this forum. As others have said positive outlook is of most importance. My husband dx’d Dec 2001 RAEB, however he is not secondary. BMT is a good option for you, if you have a good donor.Hang in there and keep us informed.
SarahMarch 5, 2005 at 10:12 pm #4471andrzej g.Member
Welcome to the forum, Jennifer.
You will find much of help and emotional support here on the forum.
Please, write every time you feel you need it. It relieves a lot.
I would have a few general suggestions.
RAEB-2 is a severe disease and a tough challenge to take.
It happens, however from time to time, quite rarely, that it evolves as a ‘smoldering’ form and lasts for years.
Secondary (due to chemo treatment, irradiation, etc.) RAEB usually is connected with complex chromosomal aberrations and especially deletions or losses of chromosomes 5 and 7. Those features are regarded similarly to the secondary nature of disease to be poor prognostic factors influencing the natural disease course and reaction to the introduced treatment. It might seem probable that either your MDS is not secondary (which would be good) or the blasts did not account for the cytogenetics and the chromosomes were evaluated from the normal clones of progenitory blood cells (I have such a doubt when considering my father’s case – his normal cytogenetics stays contrary to the dynamics of the rise in his blasts).
However the IPPS claims normal cytogenetics to be a good prognostic factor, there are many voices trying to revise it.
You are very young and do not match the standard age and sex profile of the disease. You are a breast cancer survival which makes us suspect your raeb might remain in connection with cytotoxic treatment. But you also might be just susceptible and develop your mds ‘de novo’ (which would have a better prognosis).
What are your peripheral blood counts currently..?
BMT would be definitely an issue for you. You don’t have any potential related donor, do you..?
Courage. Lots of courage.
We’re with you.March 6, 2005 at 4:13 am #4472geebeebeeMember
I’m sorry about your diagnosis, but you do have a lot of things working for you. My Mom, too, got secondary MDS from the result of breast cancer chemo/radiation and is over 100 days post-stem-cell transplant, and is doing pretty well. She’s 65, so you have a huge age benefit there. I do know the secondary can sometimes move faster, but it sounds like you have good doctors that will keep a good handle on it.
I’m far from being an expert, but if there’s any information I can give you on anything, just ask.
Take care of yourself,
GregMarch 7, 2005 at 12:51 am #4473PamyRnMember
Cant imagine having cancer one time with treatment and then getting it again as a result of that treatment. My thoughts are with you. I was diagnosed with RAEB-2 this past Nov with 12-14% blasts..advanced to AML first of Jan. Went one round of chemo and after a long hard month with infections, have been in remission since. Feel great!! All counts up on their own. No transfusions since end of Jan. Heading to University of MI in two weeks for SCT. I, like you do not have any chromosome abnormalities as I believe this will make it easier to find you a match. I am so thankful for my 30yr old male donor….lets hope he passes his physical on the 9th as my last one two weeks ago flunked his physical so they had this guys speciment down there and he worked up as a 10/10. I feel so lucky to have this chance for a cure. Best of luck with your plan of care……take care
PamMarch 7, 2005 at 1:34 am #4474shirlsgirlMember
I’m so sorry about your diagnosis, you’ve been through so much already!! You are so young….BMT may be an excellent option for you. It sounds like you are in good hands with Dr. Gore, I’ve heard his name mentioned on this forum before and I think he is highly regarded. Please let us know how your meeting goes.
take care, JodyMarch 7, 2005 at 10:17 pm #4475JulieMarieMember
Sorry to hear about your case. Everyone is affected differently. I know hearing about MDS was a true shocker to our family when my mom (who is now 53)was finally diagnosed Last September with RARS MDS. She was sick all of last year. First with a urinary track infection, then with pneunomia (spelling?) finally in July the family dr. did a blood test and seen her counts off and told her to get more iron into her diet and come back in a few months if nothing changed. In September when nothing changed and infact her counts went lower, the dr. refered her to a specialist in Cancer. After a bonemarrow Biopsy in September / October she was finally diagnosed and started treatement of Procrit. After Thanksgiving when it didn’t seem Procrit was working the Dr. suggested we start Vidaza after the Christmas season. Christmas was tough for her, but since then she’s started Vidaza. She’s gone through 2 rounds of treatments so far and is doing great. Infact, today she is flying to Chicago for some MDS seminar which is tomorrow. Keep your chin up, the first few months of treatment are the wrose, My mom who’s a nurse is still managing to work about 40 hours a week, take each day as it comes. If you do go on Vidaza, a suggestion that has help my mom out greatly is to have meals all ready done up in the freezer, so all she has to do is get a serving out and pop it in the stove or microwave.
Hang in there, all of us here at the forum are pulling for you.
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