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mdsfound
ModeratorHi Cheyenne, I am sorry to hear what you are experiencing. Chronic GVHD can occur at any point after transplant and commonly occurs in the skin, GI tract, lung and liver. Skin GVHD usually manifests as a rash, tightening of the skin and hyper or hypo pigmentation. This does not seem to be the case for you. I believe it is very common to loss muscle mass with the treatment that has been received in the past and it is very important to remain active and do weight bearing exercises when able. If GVHD is present in the GI tract, it could be difficult to gain weight. I would highly suggest to follow up with your bone marrow transplant team to make sure there is no GVHD or other cause for these symptoms. I hope this information helps.
ModeratorBone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis.
ModeratorThank you for your post with information regarding your father’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion if you have not done so already. It is not unheard of for some patients to get even third and fourth opinions from our designated Centers of Excellence. He 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/. I hope this information helps.
ModeratorHi Pat, Thank you for your post with information regarding your husband’s health. I know this is a difficult situation for you and I would recommend that you take him to one of our Centers of Excellence in MDS for a second opinion. He 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/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us at 1-800-637-0839 Ext. 210.
ModeratorHi Alan, The MDS Foundation can connect you with other MDS patients who have gone through the transplant process as well as provide you with material resources. Please contact us at 1-800-637-0839 Ext. 210. Happy to help!
ModeratorDear Clement, Thank you for posting. 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. 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/. I hope this information helps. If we can be of any further assistance, please do not hesitate to contact us.September 27, 2019 at 3:04 pm in reply to: Has anyone seen Dr Alan List @ Moffitt Cancer Center #49096ModeratorDr. Alan List at Moffitt Cancer Center, an MDS Center of Excellence, is world renowned in the field of MDS.
ModeratorOnly attenuated Shingles vaccines are recommended for patients who are immunocompromised – ask you provider before you get a Shingles vaccine. I hope this helps.
ModeratorDear Kathryn, Thank you for posting information regarding your health. 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 just to make sure you are not being undertreated. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.
ModeratorI 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. 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/. I hope this helps.
ModeratorBone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis.
ModeratorPort placement requires a surgical procedure; IV access does not.
ModeratorA port is a very useful tool for both the patient and the healthcare team. A safe, suitable IV access site can be difficult to locate for some patients and the port can result in a more efficient access than an IV site which can also cause an injection site reaction which occurs more easily with an IV access, but would be very rare with a port. Using a port vs intravenous injection has no impact on the effectiveness of treatment.
ModeratorHi Kathy, For questions regarding Aranesp you can call their patient assistance hotline 1-888-427-7478. I hope this helps!
ModeratorDear Joseph, Thank you for sharing your update on your father’s health with us. Our prayers are with your father and your family during this difficult time. Hopefully another treatment and eventually a cure will result from our efforts. Most sincerely, The MDS Foundation
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