Forum Replies Created
-
AuthorPosts
-
Rita Knopick
ParticipantHi Kathy,
My husband was on Decitibine for 2 1/2 years. Another name for Decitibine is Dacogen. He received the drug IV for 5 days a week every month. He never had any side effects from the drug. Unfortunately he transitioned to AML in June 2020 and lost his battle with the disease. Sending prayers for you and your husband in this journey.
ParticipantI believe that most of the mentioned drugs require prior authorization so they won’t list as approved. My husband was on Dacogen for almost 3 years and it was covered at 100%. When his MDS transitioned to AML he tried a new drug called Venclexta. This drug was very expensive but our insurance covered 80% and we received a grant for the remaining 20%. He also was on Medicare Part D. I hope this helps.
ParticipantMy husband passed in July 2020 with MDS that transitioned to AML. I was his “Quarterback” but the disease once it transitions to AML is a no win situation. I still ask myself was there anything more I could have done and I know in my heart there was not. My biggest regret is that when he was feeling fairly good and could have traveled and vacationed I was too afraid to leave our area and the doctors and hospital that were treating him. I too pray every day that there will be a cure someday for this disease.
ParticipantI recently lost my husband to MDS that transitioned to AML. I strongly suggest you have your husband seen at a Center of Excellence as soon a possible. You can call the MDS Foundation and they will assist you with getting an appointment.
Do not be reluctant to ask as many questions as you need to his hematologist and NP. The more informed that you are the better advocate you will be for your husband.
Best wishes and prayers.
ParticipantMark, Look into the drug called VENCLEXTA. It is a targeted drug for AML. It is in pill form although you have to take 6 pills a day and drink 56 oz of water daily. It’s given with injections of chemo 10 days on 10 days off.
ParticipantGood to hear from you Mark. I wondered how you were doing. Keep the faith that the second round will work for you. I am sending you good vibes and some prayers also. I understand that they are having some good results with some of the experimental treatments also. Stay hopeful.
ParticipantContact the MDS Foundation and get a referral to a center of Excellence is my advise. My husband has MDS and we went to a center of Excellence and are very thankful that we did.
ParticipantThe MDS Center of Excellence in Rochester NY is wonderful. Click on contact us on this page and email the patient liaison and they will help you get an appointment for your Mother. Best wishes to you and your Mother.
ParticipantSo very sorry to hear this sad new Tara. My husband is going through this rotten disease also and is in the hospital right now with a stomach bleed. We are living our lives one day at a time. Sending prayers for comfort for you and your son. God Bless you. Rita
ParticipantHello Patty,
I firmly recommend a MDS Center of Excellence that is closest to where you live. My husband has high risk MDS and we went to Strong Memorial Hospital in Rochester NY as that was the center closest to where we live in NE Pa. We are very thankful that we went there and go a second opinion. God Bless.
August 7, 2019 at 4:49 pm in reply to: Survey: How many MDS patients on high blood pressure meds #48671ParticipantHi Sally,
My husband has high risk MDS and has been on Amlodipine for 20 years. He also had radiation for prostate cancer and chemo for bladder cancer so they attribute his to that. Very interesting though.
ParticipantHi Steve,
I don’t want you to think that no one cares, but I am not at all familiar with LDH numbers. My husband has MDS high risk and has not had LDH tests so far. I think that normal range is 105-333. I checked and there is a forum for Myelofibrosis. (www.Myelofibrosis.com). I hope that this will help. Best wishes and prayers to you.
ParticipantHi Bridgette,
My husband has very high risk MDS and has done quite well for the past year and one half. He gets Dacogen (decitabine) 5 days as week every 28 days and has been getting that for a year now. I hope this helps.
Rita
ParticipantHi Donna,
My husband has MDS high risk and has been receiving Dacogen treatment 5 days every 28 days since Feb 2018. He feels a little tired after treatment but has not had any other problem after treatment. I do drive him to his treatments as he also has macular degeneration so he does not see well but I am sure he would be able to transport himself if I was not available. There are quite a few patients also getting the same treatment with the dacogen at his oncology clinic and they all drive themselves. I sure hope this helps a little. Best Wishes to you.
RitaParticipantJust an update. Thanks to Audrey at the MDS foundation we did get an appointment at a MDS Center of Excellence in Rochester, NY in August. The specialist agreed with the local oncologist but recommended he continue with the Dacogen and I am happy to report his condition is stable at the moment. The Dacogen seems to be working although all blood levels remain low.
-
AuthorPosts
