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John BradleyParticipant
Just received my third shot. I am noticing increased dizziness but all else is about the same. It will be interesting to see what else changes with side effects if any. I have wondered as time goes by if side effects increase or if they get better? The more information we can give to others hopefully will help people with this awful disease. I will keep the Forum informed.
John BradleyParticipantI go for my booster shot this week. No problems with Moderma two shots.
John BradleyParticipantCongratulations, that is great news.
John BradleyParticipantKeenan-Thank you for bringing up the important fact that yes I have ring sideroblasts. All of the data shows that if you have those you are a perfect candidate for this drug. It also appears that if you can get the generic costs go from astronomical to inexpensive. With BSBS insurance LUS in the generic goes to just pennies a day! I would encourage all of our Forum friends to look at the potential of Lus. There are many articles on this drug and education is important. I have learned a great deal from Forum folk and I fully intend to continue to be educated about other people’s experience with this horrible diesease! On a lighter note As I am writing this reply I am watching my Denver Broncos and eating a jelly donut! Shame on me!
John BradleyParticipantKenyan- I was watching my RBC and HMG gradually go south with no further treatment! I go to a Center of Excellence in Denver and after my latest Biopsy my doctors said we needed to try Luspatercept before trying others. Since I have liver cancer that is being treated at Mayo my doctors have to coordinate treatments-no easy task! I am lucky to have superb insurance that allows me to go anywhere in the US for any treatment. Before my Lus shots my RBC was 1.9. and my HMG WAS 6.9. My parents both lived over 100 and my doctors attribute my health to excellent genes! Everyone can laugh at that but I believe you are where you come from! Trying to juggle four major dieseases is interesting but I want to live as long as possible and help others. I am a realist however and the standard joke at Mayo is which will eventually be my swan song. When I am there we all laugh at this ghoulish talk but let’s go out smiling! I should also note that I exercise every day in my swim spa or on my bicycle. I find swimming to be the best exercise and have been 5’8 and 145 lbs for the last 30 years. Even with diabetes I eat mostly fruits and veggies and my A1C is 6.1. Meats in general are out except for chicken and fish. I do however love donuts and manage to sneak in two or three a week! After LUS runs it’s course I will prolly try Procrit. We will see. I will continue to let the Forum know my future ADVENTURES!
John BradleyParticipantWanted to update my situation with Luspatercept. I will soon have my 3rd shot and after my first two shots I can report very POSITIVE results. Rbc count and hgh up to a level I haven’t seen in a year. NO side effects so far! I know this is preliminary but for me every uptick is life saving. I still have not needed transfusions which I do not want to start on this regimen! I am the 76 old person with hemochromatosis and diabetes and liver cancer. Do not be afraid of this drug. I am well aware that the success rate is only about 45% but what do you have to lose? Also my hematocrit is up a staggering 25%! I will continue to report to Forum members on my results.
John BradleyParticipantI am a 78 male with liver cancer, diabetes, hemochromatosis, and MDS. Does it get any better? I just started Luspatercept and am hopeful to bring up my 7Hgm and 1.9 rbc. I have never had a transfusion and am hoping to avoid them. I will keep the Forum appraised about my experiences. Here’s hoping!
John BradleyParticipantThought I would update my situation for forum members. After a second liver embolization at Mayo when I got back to Denver a interesting thing has happened. Even with no change to my red blood cells and very low hemoglobin I have felt better as per energy levels! I don’t understand this but I am happy to report it. My MDS doctors are surprised but happy to see me so energized. Can I explain this clinically? I realize this may be ever so fleeting but all doctors say we will watch and not do anything for the present. Liver tumors are in a hold pattern and I will continue with embolizations in the future at Mayo. Thus we will see what happens in the coming months. I am happy for ANY time!
John BradleyParticipantThanks all. In particular to Phil who expressed my dilemma with having diabetes, hemochromatosis, liver cancer and MDS. It is hard to juggle all of these at once and come up with reasonable solutions! I am presently having discussions with my Mayo doctors about the next steps for the liver tumors after successful embolization procedure two months ago. Next ,surgery or not? And I will discuss with my MDS doctors about procrit to get my hemoglobin up. Thanks again to Forum members for posting.
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