None of this makes sense

[Roger]

Good evening all.

I have never done anything like this before, and I hope that you will have patience with me in case I get to significant rambling or sound out of line.

I have been diagnosed with low to intermediate 1 MDS RCMD variety approximately one year ago. I have several genetic transmutations that I understand are unfavorable such as runx1, srfs2, etc, but for right now, I do not know how to deal with the symptoms I am incurring. The main symptoms are large sores in my mouth, rashes that will not go away, bruising all over that is significant, I am out of breath, my nose bleeds at the most unkind of moments, and I am always tired. I am assured that with low to intermediate MDS, these symptoms are not related to this disease. Never before have I had any of these symptoms.

I am starting to feel like I am posing the treatment questions to the wrong physicians, or that I am becoming so negative that nobody wants to hear a word I have to say.

Has anybody experienced the same type of frustrations with this diagnosis and treatment? I am receiving aranesp for low hemoglobin, but so far, that is it.

Any help would be greatly appreciated, and god bless.

[Anonymous]

Dear Roger, I know this is a difficult situation for you and I would recommend that you go to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. You should be very carefully assessed before undergoing any treatment. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. For your mouth sores, Biotene oral rinse or Magic Mouthwash Rx can help.

[Judy Bssisso]

My mother was also dx with low mod risk. However, when she began having similar symptoms, the doctors looked at everything BUT the possibility her MDS was progressing. After messing with other diagnosis for nearly a year I requested anoth bone biopsy. It was done and found she was in acute leukemia! Listen to site administrator. Seek one of their MDS centers of excellence doctors, we finally did but may have waited to long. She very sick in a center of excellence center now but not doing well.

[Kellie DeVito]

Hello. My father was dx with rcmd about 6 months ago. His main issue is very low white cells/neutrophil. He’s had terrible mouth sores last few months and nothing worked until his doctor recently prescribed a steroid mouthwash and neupogen shot every 5 days. He’s had considerable improvement in the last week and is finally eating after 2 months. I would ask your doc about the steroid mouthwash and see where white cell count is at.

[Roger]

Good AM All.

Thanks so much for taking the time to write. I will take the The Site Administrators instructions, and go to a Center of Excellence.

I also appreciate the positive “note” of your posts, and I see that I need to do something about this quickly.

Additionally, I hope that everything works out well for you and your families (actually everyone).

Thank You so much.

[Stephen Smith]

I was diagnosed with early onset MDS one year ago. My only complaints were fatigue and mouth ulcers. My doc said both symptoms were a coincidence and gave me a lecture on dental hygiene. A Google search disclosed that the mouth ulcers are related to autoimmune problems. I got rid of that doc and the Foundation made an appointment with a doc listed in the Center of Excellence. After genetic testing and a bone marrow biopsy pre-MDS was confirmed. I have low neutraphils. I get the mouth ulcers every 21 days without fail. They last 7 to 14 days. They vary from a minor nuisance to debilitating. I use a prescription lidocaine mouth rinse. My doc never heard of this side affect but knows it is related. I had the opportunity during a webinar to ask Dr. Smith from John Hopkins about them. He said the mouth ulcers are definitely related and he has had patients with them in the past. Unfortunately he said nothing could be done to prevent them. Best of luck.

[Edwina Kolb]

Hi Roger.
You said that you have the RCMD type of MDS…so do I, and your symptoms make perfect sense. I was diagnosed with intermediate stage RCMD earlier this year and, although I realize this disease manifests itself differently in different people, I have had all of the symptoms you described. This type of MDS not only affects your red blood cells, it also affects your white blood cells and/or platelets. That’s why you’re having nosebleeds and bruising in addition to anemia. I support the recommendations that you find a Center of Excellence where physicians specialize in diseases of the bone marrow. This is a complex disease that affects the entire body so the more you know about it, the better able you’ll be to participate in your treatment. There is a lot of self-education material online at sites like this one, the NIH, The MDS Beacon, the American Cancer Society and the American Society of Hematology.

[LeAnn Duke]

Hi Roger, I too have MDS RCMD intermediate 1 stage. I have progressed over the past year from RARS low risk. I am blood transfusion dependent and have been taking Decitibine infusions for the past 5 months with no improvements at this time. I am 59 and a female. I am with everyone else in that you should find a centers of excellence and see a specialist who deals with MDS. The only symptom you mentioned that I am not familiar with is the mouth sores. That’s a new one for me and I will be remembering that one. I don’t have the nose bleeds or significant bruising yet though my white blood cells and platelets get low due to the infusions I’m taking.

This is definitely nothing to play around with and I certainly cannot understand Dr’s who won’t send you to a specialist. Keep looking till you find a Dr who will listen. I don’t know where you live, but MD Anderson Cancer Center in Houston TX is a great place and they also have clinical trials to try if the FDA approved Medications don’t work. They would of course have to evaluate your particular type of MDS and your genetic tests as well. Good luck in your search for the best Dr.

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