[Donna]

Kathy,
Are you taking the Erythropietin for osteoporosis? I too have osteoporosis and pre-MDS. Does your doctor feel there is a connection in any way between MDS and osteoporosis? I have an okay bone density test in Oct. 2017, then in Jan. 2018 I got a compression fracture in thoracic spine from coughing. X-ray says diffuse osteoporosis. That was quick. Something seems weird. I had an MRI which showed invasive bone marrow process in spine which could be anemia or other form of blood disorder. I have held off on treatment for osteoporosis because of all the side effects from most of the meds. I had not heard of Erythropietin though. Can you tell me anything about it? Thanks.
Donna

[Donna]

Hi Amy,
I am watch and wait, get blood work every three months, called pre-MDS on bone marrow biopsy. However, I have 4 mutations that seem to matter: ASKL1, SRSF2, RUNX1 and TET2. My platelets, WBC, RBC and hemoglobin are all going down…WBC around 1.6, hemoglobin 10.8, RBC I forget and platelets 63,000. My MD tells me that when my platelets get to 50,000 I will have to start treatment and he said it would be either Dacogen or Vicaza, but most likely Dacogen. All I get for symptoms are bruises, tired/weak feeling and back pain. I guess I’m only telling you this because I imagine the Dacogen must be effective with ASXL1. My doctor did say that he has to tell me that it doesn’t work for everyone but he didn’t say why. Hmmmm. I hope your husband does well. It’s kind of like a cloud that follows you around and you don’t know what is going to happen next.
Donna

[Donna]

Hi Debbie,
They have been watching my blood counts for several years, but I have only been to hemotologist/oncologist the last 4 years. I am just watch and wait. My WBC run around 1.2 to 1.8. Hemoglobin is 10.5 and platelets are 63,000. My RBCs run a little low too. I have back ache and back pain, but I have been diagnoses with osteoporosis, so I’m not sure what is causing the pain. I guess I have some back problems too by MRI. I also have dizziness which is from my ears. I have been told to be very careful with taking any anti-inflammatories, so I just take Tylenol. It only helps a little, not like Advil, but I too am afraid to take things that might effect my counts. Good luck to you and I hope you stay on watch and wait for a long time….me too. Donna

[Donna]

I am so sorry for your loss. Pets are such an important part of our families. It looks like you and your wife gave him a great life! I’m glad you are doing good as far as your health.

[Donna]

Lillian……..Glad to hear. As long as you are comfortable with the decision, it must be the right decision. I’m glad to hear the Dacogen is doing it’s job. I have not needed treatment yet…just talk about Dacogen. Please keep us informed as to how you’re doing. I am going to the patient/caregiver forum in Boston next weekend. It should be interesting. Donna

[Donna]

Hi Cecile………..I am 73 and I think I feel the same as you about BMT. It is very involved. I’m happy for you that your chemo is working and you are enjoying life.
Donna

[Donna]

Lillian,
When are you having your BMT? Do you have a donor?
Donna

[Donna]

Lillian,
When are you have your BMT? Do you have a donor?
Donna

[Donna]

Hi to all
I have a lot of back pain, but I also have osteoporosis, so it is hard to tell what is causing it. I had an MRI and it read that there was an invasive bone marrow process in the spine which could be myelofibrosis or an anemia. My doctor said he sees this on MRI with MDS because the bone marrow looks different on MRI. IN my case, they have ruled out myelofibrosis. I don’t know if this “process” causes pain. I do have a few issues with my spine unrelated to MDS so who knows? I have been saying for years that I was in great health except for my musculoskeletal system.
Donna

[Donna]

Ray………..What is your mutation and do you know what it means?

[Donna]

Greg…………I want to wish you the best for your stem cell transplant. I will be interested in hearing how it all goes. I also go to Dana Farber and am still watch and wait. I plan to attend the forum in Boston on July 21. I am not a candidate for the full stem cell transplant but may be a candidate for the mini. That was only mentioned once. Time will tell I guess. I hope you do well.
Donna

[Donna]

Thanks for the encouragement. I decided to cancel my appointment tomorrow because of all the awful side effects. I might go for a second opinion to see if there is anything different they can give me that won’t be in my system for a year. It is good to know that the Reclast doesn’t interfere with your MDS treatment. Donna

[Donna]

Hi Ray, As far as the bone marrow biopsy goes, I too was freaking, but I just requested conscious sedation. In fact, I changed doctors because the first one though local and Ativan would do. My current doctor was fine with conscious sedation….awake, aware but no pain….just a little pressure when I imagine it would be pain without the sedation. Donna

[Donna]

Ray……I don’t know how to PM but I can tell you that my mutations were: ASXL1, SRFS2, TET2, RUNX1. Donna

[Donna]

Wendy……I extend my sympathy to you regarding the loss of your Dad. May he RIP. Donna

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