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I will relate my own personal experience. I was on Vidaza for several years and it did keep my disease under control. Prior to Vidaza, I did try two other drugs briefly (Arsenic and an experimental drug, neither of which helped). However, once Vidaza stopped working, I underwent high dose induction chemotherapy. I tolerated the chemotherapy fine but 6 weeks after induction my disease had returned. So I think part of the answer may be how healthy you are today and what are your long term plans with regards to treatment. My doctors told me that the long period of treatment with Vidaza caused the disease to become more resistant to treatment with induction chemotherapy. I also believe your doctors should be the one to “strongly” suggest the right choice between these two options.
I am sorry and sad to hear about Bob. I have followed Bob’s course for several years. You two have fought a great battle and have been an inspiration to so many of us. I’ll be praying for your peace and comfort in the coming weeks and months. Harold
The azacitidine (Vidaza) injections under the skin generally cause a significant local reaction (bruising, pain, blisters, etc.). On the other hand, intravenous infusions would ideally be given through a “permanent” catheter placed in a vein. These can also become problematic (infections) and they require regular care (dressing changes). For some patients starting a IV for every cycle of medication might be difficult, and over time, these chemotherapy treatments can cause it to be even more difficult finding a good vein in which to start an IV. At the time of my treatment the only option was azacitidine subcutaneous injections and I took these for many months. Since this time, I have had a permanent intravenous line “installed.” These lines can also be used to draw blood, administer blood and other drugs, and as a result you no longer require routine sticks. I suppose the intravenouses infusions worked out best for me but it’s a close call.
Connie, I also very much enjoyed your blog! And Dr. Ore’s music as well. You are both blessed to have these wonderful gifts of expression. Harold
Sarah, we remember and appreciate your faithfulness… to your husband and to the forum and to our cause. I pray that time will ease your pain.
Josey, I think it is just fine to email your doctor, especially if they provide an email address on their card. I often email my doctor at Duke and he is very responsive. I have had very good results from doctors at major medical centers/institutions.
I was on Vidaza for about 14-16 months without any significant side effects. While my disease did not go into remission while on Vidaza, it did seem to keep the bone marrow blast count under control for over a year. During the last few months on Vidaza therapy, I began to require platelet and red blood cell transfusions and they became more and more frequent. I have since had a stem cell transplant and I am doing well. My Vidaza treatment was 7 days on and 21 days off. I used something for nausea before each dose of Vidaza and I routinely used something for constipation.
This is great news. Our best to Ashley. She will do well and life will be normal again soon. I will continue to remember you both in prayers. Harold
If you search (Google) “Danazol in myelodysplasia” there are lots of references to Danazol therapy in myelodysplasia, most of them dated. I think its use in MDS is mostly anecdotal but it may be of benefit in certain patients. It’s actually a synthetic male hormone used mostly for female disorders.
Sandy, thank you for a powerful and loving note and your unselfish attitute. I often prayed for Mike and now I will continue to remember you. Please take some time for yourself. Harold
Loretta, continue to stay strong… mentally, physically and spiritually. I hope the chemotherapy has been successful in getting you to remission. Keep the faith and I’ll pray for deliverance as well.
Sandy, I am sorry to hear this news about Mike. I’ll be thinking and praying for you and the family. Harold
The drug could be hydroxyurea (Hydrea), commonly used in certain leukemias to reduce the number of white blood cells.
Kathy, I have had a long standing problem with low platelets. For me, “normal” platelet transfusions only last about one week. HLA-matched or cross-matched platelets do give a better response in terms of the platelet boost and platelet survival. I do not normally have a platelet transfusion until the platelets are below 5000-6000. When the platelet count reached about 1000, I will have numerous petechia and larger reddish/purplish spots in my mouth and a few spots in other areas of the body. I will also have a few significant black and blue spots (bruises) on the arms and legs. I feel very lucky that I do not have bleeding despite these very low platelet counts. I think it varies from person to person as to the platelet count when they become symptomatic (bleeding) and it must be monitored carefully.
Phyllis, I am so sorry to hear about Ron. I’ll be thinking about you in the coming days and weeks. Thanks for sharing the last few years with us. Harold