Forum Replies Created
-
AuthorPosts
-
lynne
ParticipantKathy, I was on Exjade for several years with not a lot of success. Jadenu is a newer drug,so my oncologist/hemotologist switched me,and after 20 months I went from 3000 ferritin to 900 ferritin. I realize that everyone responds differently,but I wanted to share with you my experience. Lynne
ParticipantA suggestion from my own experience would be to have a conversation with your doctor re Exjade vs Jadenu for his ferritin levels. Lynne
ParticipantI have been on Jadenu for about 20 months. My ferritin was a bit over 3000 when I started,and it is now a bit over 900. I haven’t had any side effects so far.
ParticipantI am having much better luck on Jadenu than I was on Exjade that I was on before. Lynne
ParticipantThe only person who can tell you if it is high risk of low risk MDS would be the doctor who made the diagnosis. This information is normally provided to the doctor through the results of a bone marrow biopsy.
ParticipantI have MDS-RARS,and have been on blood transfusions for years. My red cells are my problem…..no white cells or platelet issues so far. The iron overload from the transfusions is a problem for me,as I have iron on my heart,and was recently diagnosed with congestive heart failure. I had been on Exjade for 6 years to hopefully control the iron overload. My hemotologist recently changed me to Jadenu for the iron overload,but it has been to recent to know if it helps.
ParticipantEmily,when the New Year’s holiday is over you might consider calling the MDS Foundation and asking them to send you all the wonderful information they have available for patients. Lynne
ParticipantI was “watch and wait” for a long time as well,and now I have to get a blood transfusion every three weeks and have iron overload on my heart,thus congestive heart failure. I would recommend keeping on top of it,and if u can go to one of the centers of excellence, even if for a second opinion. I live 2 hours from the Sanford Center of Excellence,and my husband and I just went to a conference there at their cancer center for mds patients and their caregivers. My doctor is in Modesto,as we live in Oakdale ca.
ParticipantI am on 60,000 procrit once a week. Anyone at 80,000,and how is it tolerated? Thank u. Lynne
ParticipantGarsch…..so glad you have relief from the shortness of breath even though you had to go thru the transplant. I have had MDS since 2001 without a lot of problems until recently. I am having echocardiogram this week. I trust my doctors. How long did you have the shortness of breath before transplant?
ParticipantWere you ever on Exjade? How often do you get blood transfusions? I will ask my hematologist. Is it a daily pill?
ParticipantThanks for replying to my post regarding shortness of breath. I am a 76-yr old female. I am having echocardiogram soon. What test did they do for lungs? They did chest xray and EKG in emergency room. Are you on Exjade for iron overload?
ParticipantCan you give me an idea where your Ferritin level was when you began Exjade? I’ve read so many different things about what is considered "iron overlaod". It seemsm that a consistent Ferritin of 1000 is considered the average numberr,but I just read in a book written by a doctor at Stanford that 2000 is o.k. to start Exjade.
ParticipantI have MDS-RARS.Have CBC checkd every Sunday.current 9.1
ParticipantLynette…………..My ALT is 45,and my alkaline phos is 140,and they were normal before I started Procrit. The doctor does’nt think the two are connected,but he’s going to “watch it”………always somethinbg,huh?……..Lynne
-
AuthorPosts
