Forum Replies Created
-
AuthorPosts
-
Jean Ira
ParticipantThank you, Kathie, that’s encouraging. It’s great to hear that your husband is doing so well!
Thanks, Ashley, for your response.ParticipantHe was on it before, just ramping up to 4 pills a day when the infection/temperature took him to the ER and hospital for 2 weeks.
ParticipantDear Heinz, Will you please tell us the name of the cancer drug pill that you were prescribed (off label use)?
Thank you,
JeanParticipantMy husband started Vidaza in June of 2022. He has been on a 5 day injection cycle followed by 3 weeks off; although because of holidays, he had only 3 treatments one month and 4 another. He was originally diagnosed in February 2020 at the intermediate level and was on watch and wait. Beginning Vidaza: RBC 3.43; HGB 8.4 and platelets 14. Last week showed RBC 4.2, HGB 14 and platelets 196. It was a gradual improvement until cycle 6 or 7 when numbers improved more. He is tired 2 days after the 5th injections, but has no other side effects. He has energy and strength to do what he wants. He’ll soon be 72.
ParticipantMy husband was diagnosed about 3 years ago at 69 with intermediate MDS – seems all counts low, especially platelets. He was on watch and wait for 1.5 years and then started taking Promatca for platelets. Platelets held quite steady for almost a year before dropping rapidly below 5. He ended up in the hospital and other values dropped. He was given one transfusion of red blood cells and also platelets. They discovered he needed matched platelets. After 5 days he was released and began having labs 3X a week and getting matched platelet transfusions 2 -3 times a week and started on Azacidine (Vidaza) in June of 2022, getting injections 5 days in a row and then 3 weeks off. He tolerates the treatments very well and currently has platelets at 255 with no transfusions; WBC 5.0; RBC 3.87; HGB 12.6; ANC 2.7; Neutrophils 54. He now gets labs monthly. He is active and enjoys life.
ParticipantCarol, My husband needed matched platelets when he didn’t respond to general platelet transfusions. I hope your surgery goes well.
ParticipantMy husband has low RBC and WBC, but platelets were extremely low. He does not bruise easily now that his platelets
are higher. Previous bruising was caused by even a slight bump, but also showed up often on his arms caused by the pressure of carrying even very light weight objects.ParticipantMy husband has had petechiae when his platelets consistently dropped below about 15 (15000). It appeared mostly on his legs and went away with a rise in platelets. He has labs 3 times a week and if his platelets are below 20, he has an infusion of HLA or matched platelets. Many don’t get platelets until they are at 10, but since his dropped rapidly, his threshold is higher. The platelets seem to be holding more (up to a high of 8 days) since he started the Azacitidine. He has had 4 rounds of that. He also has low RBC and WBC.
ParticipantMy husband, 70, was diagnosed with intermediate MDS in February 2020 and has been on watch and wait since that time. He feels well and leads a normal life. He has labs and an appointment every 4 – 6 weeks. He started on Promatca in June 2021 because his platelets had been dropping. It is thought that Promatca has kept his platelets at least stable. (17 in June; 22 this week; HGB 10.5; WBC 2.68: generally closer to 1.5) The only side effect he has had is some coughing.
JeanParticipantKathy,
What chemo medication treatment are you on?
My husband’s doctor said he will likely start in a month if he remains on the path he’s been on.
His platelets are 16. He has been taking Promacta for platelets. It helped some for a couple of months.
He has low RBC and WBC. Like you, Maria, he isn’t a candidate for BMT.
JeanParticipantThank you, Kathy, for your response. My husband’s platelet level is 17,000. I hope your BMT is successful! My husband is not a candidate for that.
JeanParticipantKathy, aiqueen, Michael and Donna – It meant so much to my husband and I that you all would take your time to respond. You have been very helpful also in that you understand the frustration of this disease which affects individuals differently. The nearest Center of Excellence is 250 miles away. His hematologist/oncologist who he sees monthly, does have other MDS patients. He has an appointment tomorrow which will include labs taken today. I am unfamiliar with this site, so I hope you all received our appreciation.
-
AuthorPosts
