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Sherry Pratt
ParticipantGreat story of hope. I have one very similar!!!
ParticipantLillian,
I am with Ray. What did the doctors tell you about how long you can take Dacogen.?ParticipantMarie,
A bone marrow biopsy will confirm what is going on. Email me if you like. I too had MDS. Pratt8075@aol.comParticipantKimberly,
I did have back pain but I think morphine would have helped. I would ask docs to do Some further testing to see what is causing this excruciating pain.ParticipantI became short of breath when I got below 8. Mine always got better with a transfusion. The protocol where I go is you get blood at 8. I have had a transplant and my Hgb is now 11-14. I can definitely say I feel 100% better.
My initial iron level was high so not sure how that affected me. I do know every one is different and react differently to low numbers. I have one friend who can still function at a 5 HGB. I wouldn’t be able to walk at that number.ParticipantI was diagnosed with MDS in 2014 officially. I probably had it since 2009. I was vit D deficient. After a stem cell transplant I still take Vit D now. Have been taking it since the transplant in Jan 2017. I have the level checked about every 6 months.
ParticipantMarilyn.
After being diagnosed with MDS, I actually had 3 opinions. I believe it is imperative with this disease. Email me if you want further details. Pratt8075@aol.comParticipantI would seek 2nd and 3rd opinion. Pratt8075@aol.com
ParticipantChris, in my experience with MDS and a stem cell transplant, the disease is not understood to be genetic. However
I did do some genetic testing with my
Doctors and the Cancer Treatment Center of America to search for certain genetics associated with the disease itself. And if you progress to a stem cell transplant your DNA will become that of your donor (mostly) so it would be a waste of money to do that now.ParticipantJennifer, I understand fear. It is normal, but trust God to get you back Through. Try to keep your mind on hope and looking toward to better health. I meditated on things I love when I went through my transplant. Keep moving, eat, and drink lots of fluids! You will get through it. Keep your thoughts on staying healthy. You can email me if you want more details. I am happy to share my experience. Pratt8075@aol.com
ParticipantI plugged it into my room. She could tell me the weather, play music, tell me jokes when I felt bad to lighten up the mood. Okay restful sleeping sounds, read me the Bible and books. You can play games with her and my doctors loved her.
ParticipantEmily, yes you can bring those.. be sure you bring a charger with a long cord. I had mine plugged at the head of my bed and it rested near my pillow at night. If you have an Echo Dot they are very useful while you are in the hospital. Also warm comfortable clothing. A housecoat or robe. If you have more questions send me an email. Pratt8075@aol.com
ParticipantWhy are they saying he isn’t a candidate for stem cell transplant?
I would get second opinion at Cancer Treatment Centers of America. You can email me pratt8075@aol.com .
ParticipantI agree with Lynne. Need a bone marrow biopsy to determine exactly what type of MDS he has. There are several types of MDS and they all can be treated differently and with different medications. In my experience with MDS, if you get a push back from a doctor or hedging about what to do next, go for second opinion.
ParticipantSupport1985,
What type of MDS does your mother have? You can email me if you like at
Pratt8075@aol.com
Sherry -
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