Newbie here
 

My lovely wife was diagnosed ten years ago with aplastic anemia. Misdiagnosis initially, had a very rough go, went to another hospital where things were sorted out and she made it through. Her counts were down but she was steady at her "new normal". The good doctor followed her until last summer when they decided to part ways on the condition that if something happened help was a phone call away. Well, last month she was feeling a familiar heaviness, low energy and finally some chest pain that set off the alarm bells. Our GP ordered blood work, etc. and her counts were in her boots so we made a visit the local Emerg for a couple of units of O neg. So the phone call was made to the good doctor, tests were done and officially - few hours ago - she was diagnosed with MDS.

Hi Mike S,

I'm so sorry to hear about your wife's diagnosis. I'm not a medical expert, but I would like to give you hope that many types of MDS can be managed. I have a less aggressive form of MDS called Del 5q which I've been living with for seven years with the help of a drug called Lenalidomide.

This forum is great and your sure to find that there will be someone with the same diagnosis that can pass on their wisdom.

Rachael

Mike,

My wife was treated for AA, then later diagnosed with MDS and successfully treated. Every case is different, but I hope you and your wife are equally successful.

You and your wife will need to learn all about MDS. Given your wife's history, you must already know quite a bit about the symptoms of low blood counts, about CBCs and other tests, and many of the words that hematologists use in their medical lingo. You'll probably have an easier time than most people understanding what you read about MDS.

Your wife should go to a physician with MDS experience for a full evaluation. One of the first questions to ask is about your wife's MDS classification or severity. That gives you an idea of what category her disease is, whether it's in the low-risk group or the high-risk group, how urgent treatment is, and what treatment choices are likely to be recommended.

Good luck.

Hi I'm Mikes wife Mitzi. So our new diagnosis yesterday was of MDS monopsony 7. I have been trying to look up information on bone marrow transplant related to this subtype. Anyone have experience with this?

I also have a monosomy 7 chromosome abnormality and have been looking for information on how that affects the prognosis of a stem cell transplant. If you have to have a chromosome abnormality, monosomy 7 is not the one you want. I found the attached article that may be of interest to you.

Did they also do a next gen gene mutation study. Mutated genes can also be predictive of prognosis.

Hope you do well!!

Data

Hi Data,

That's a heavy load reading that. The language is way over my head but I caught the gist of it. Sounds like a real challenge. I'm not sure about the test that you mentioned but we're meeting up with the hematologist (the good doctor) in a little over a week to get the lowdown and the plan.

Take good care and kick gluteus maximus,
Mike

Mike,
I don't claim to understand it fully and I have read it numerous times. What I did get from it was monosomy 7 is not a good thing to have going into a stem cell transplant. I have an appointment on Dec 1 to talk to my doc about a stem cell transplant. I want to ask him how much additional risk the monosomy 7 includes as well as additional risk from the ASXL1 mutation.

Good Luck to Mitzi!!!


Data