How long can we be on Vidaza.

[Daniel Chaviano]

I,m 68 years old, being with MDS for the past 3 years, 2 and haft years on Vidaza, seems working fine , but for the past month my Hemo goes down , ( I only got problems with my Hemoglobin levels no other problems , and barely symptoms ) to the point I needed a Blood Transfusion last month, Vidaza 5 days every 5 weeks , and Haranex injection every week , I saw the Transplant specialist and seems like I want a good candidate, I,m in Miami, Silvester Comprehensive Cancer Center , great doctor , fantastic nurses ,but still wonder how long with hat be, Doctor say for a lifetime , but how long is that period ? Wish you all the best of luck

[mdsfound]

Hi Daniel, You are going to an MDS Center of Excellence so you are in good hands. I can connect you with other transplant survivors in case you have any questions regarding the process for support. There are also other treatment options just in case Vidaza isn’t working for you any longer. Email patientliaison@mds-foundation.org.

• This reply was modified 5 years, 1 month ago by mdsfound.

[Bridgette Perkins]

Hello.Daniel.Can u email me other options please! bridgettecockrum@gmail.com

[debra]

I am probably going about this the wrong way but I am exhausted sad and confused so I am going to give this a shot. I apologize if this is infringing on anyone else’s “post” but I could not figure out how to begin my own post. I am writing about my dad. He was diagnosed 18 years ago with MDS low risk. Has done really well until about 3 years ago and is now transfusion dependent. He is 82 years old and getting 2 units every other week and even then hemoglobin hovers around 6 (at best). We were told today he has shifted to high risk and they want to do another BMB (last one in 2011) and possible start him on Vidaza. I absolutely cannot see putting this man through what appears to be an incredibly time consuming, physically brutal regimen at his age. And he is not in great health otherwise. I need honest opinions. I read horror stories where people say if they had known how rough it would be they would never have let their loved one go through it. They would have just gone for quality of life over quantity. My dad highly values my opinion and at this point I do not know how to advise him. Thank you to anyone who can help.

[anges]

Hi Debra,

I’m sorry to read this about your dad. I am Dutch but I will try to explain in good english what my experiences with my mother who has mds are. My mother was diagnosed September 2018 and in Octobre she started with Vidaza treatment. She only had 2% blasts. She is 78. It was very tough the first 4 months. Her platelets dropped and also her bloodcounts so she got very tired and was often out of breathe. Every month she needed a blood transfusion, especially right after she got the Vidaza. I felt so sorry for her, she became very weak and everytime she got the Vidazatreatment, she would get nauseous, throw up and felt feverish. She also got obstipated from the treatment at a point she had to go get a klysma at the hospital. For the nausea she got anti nausea medication but that is what triggered the obstipation. I knew that deep in her heart she wanted to stop the treatment but because of her children and grandchildren she pulled through. Since february going to march, her bloodcounts and platelets started to increase. I think this will be the second month she doesn’t need a blood transfusion because her red bloodcells are stable. She also doesn’t get nauseous anymore after treatment and she doesn’t suffer from obstipation at this point. My mother has diabetes also and it was bad. She never wanted insuline injected but since the diagnosis of mds I was adamant she took the injections cause I thought it would make her overall condition much better and it did. For now she feels much better, her color is healthy again and she definitely came a long way. I googled and read a lot and I was glad I came across this forum so I could pick up advice here and there. Like I gave her every day a cocktail of folic acid, b6 vitamins and b12 but also papaya leafs tea everyday. I don’t know if that helped her but it didn’t turn things worse either so. I hope I could help you a little bit.

[Tom]

Hi Debra, My husband 75 started Vidaza in October 2018. He has had 7 treatments. stomach is sore and tender, no nausea and he takes something before his shots.The week after he starts to feel better and stomach gets better. He gets 2 shots each day ( 2 shots because such a large amount it has to be given in 2 doses) ( 5 days on- off 3 weeks). His last transfusion was in December 2018. His blood counts haven’t gotten to normal but better than they were .Since Oct to now with the Vidaza his symptoms are better. Not sure whats going on but his counts have started to drop. He also gets insulin. This past week his WBC 2.1, RBC 2.97, HEMO 11, PLATETS 11, ANC 361.. We try to stay away from sick people, and no reason to cut yourself I tell him. I open doors or do what ever I can to avoid him touching anything in public. ( menus, salt & pepper shakers) We try to go out to eat between lunch and supper to avoid people. Can’t wait till summer when he can interact more with people being out in the open. Less chance of getting infected. Not sure what wuold be without the Vidaza I guess blood transfusions all the time.

[Ken Yamashita]

I’ve been undergoing Vidaza treatment since Spring of 2014 and still going. However, my blast counts have slowly progressed from 5% to now 12% (from 2014-Present) with no bone marrow donor in site. I’m 48 years old living in San Antonio, TX and working full time as a Cyber Test Engineer. My Vidaza treatments consists of treatment each month for five consecutive days. During the holidays (e.g., Thanksgiving, New Years, Christmas) I receive treatment for four days instead of five. If you have any questions, comments or concerns please don’t hesitate to ask!

[Chris Ballmer]

Ken – What criteria do your docs look for to do your BMT? Is it lack of donors? There is Anthony Nolan, and other non-profits who have their own donor databanks, maybe you can research others like that, who may help you get hooked up.?

[Ken Yamashita]

Hello Chris, presently my stem cell team are searching for donors who are a 50% or greater match. They have identified few haplo (partial match) candidates but I’m very reluctant to use a partial match due to high probability of side-effects, complications and Graft vs Host Disease (GVHD). I do not want to spend my last days in a hospital bed because I have a 9 year old daughter that lives me 50 percent of the time. My other alternative is to just accept AML development and live with it. Once my body transitions to AML my oncologist has few chemo treatments in mind to counter or slow it down. This way, I can continue to care for my daughter and raise her at home. I’ll be honest, each time I visit my stem cell team (Methodist Healthcare Cancer Network A Sarah Cannon Partner) I try not to ask too many questions. Too much information makes me feel uneasy. I am cognizant of the consequences once AML develops but I do my best to put those thoughts in the back of my mind so I can focus on my daughter, my wife and engineering job. “Please do not hesitate to ask questions.”

[Chris Ballmer]

Ken –

I hear you man. We are thinking of our loved ones especially the children, and that’s the right way. I hope you find your match, even if partial, and that you get well… we don’t have much of a choice other than to let it degrade, and i’m not in the place where i want to sit around and wait to die personally, but that’s just me… but it’s going to be on my terms as much as possible. Keep us posted, maybe someone else will have ideas for you…

chris

[Ken Yamashita]

Chris,

Thank you for the kind words. I will continue to fight and maintain my quality of life by giving everything I have in me to minimize AMLs effects of interfering with my family. Stay strong my friend!

[Jim Shofner]

To Debra,
My wife is 83 and has just finished her 22nd treatment of Vidaza after the diagnosis about 3 years ago. She started at 5 days and a four week cycle, but now is on five week cycle. She has injection site discomfort during the week of treatment, but it slacks off and has 3 or now 4 good weeks. Nausea very minimal if any, but she does get an infusion of anti-nausea and steroid first day of treatments which do help. Her low platelets are primary concern and hemoglobin is low which causes tiredness. She had a transfusion last month and the doctor said that will probably happen again. In her case, I do not see the treatments as ‘physically brutal.’ I am confident it has prevented her from progressing to AML. She is in good health otherwise. The treatments do take some time, but she is thankful for them. The results of BMB and the advice of the doctor would guide me. Prayers.
Jim

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