Hi @bettersleep68 As we age, some of the meds used to treat AML can be pretty hard on the body. Fortunately there have been great advancements in the field of blood cancers over the past years that are much better tolerated by patients where traditional treatments aren’t an option. They are also used for patient with AML who aren’t candidates for a bone marrow transplant.
There are some awesome success stories with members in the forum. I want you to pop on over to this conversation with @lindagi and @dancouclanel4 along with other members on the same V & V regimen! I think you’ll feel a sense of relief!
Has anyone taken vidaza and venclecta for aml and what results did you have
.and what were the side effects
..thank you..justing looking for some information
Hello ....went to doctor
..we are going to do the v and v treatment...repeat bone marrow in 2 months..she said at me age 74 ...aggressive treatment would be hard for me..do you know anyone who did the v and v and had good results..I am worried I will not go into remission....thank you for your time
Hi @bettersleep68 As we age, some of the meds used to treat AML can be pretty hard on the body. Fortunately there have been great advancements in the field of blood cancers over the past years that are much better tolerated by patients where traditional treatments aren’t an option. They are also used for patient with AML who aren’t candidates for a bone marrow transplant.
There are some awesome success stories with members in the forum. I want you to pop on over to this conversation with @lindagi and @dancouclanel4 along with other members on the same V & V regimen! I think you’ll feel a sense of relief!
Hello ....went to doctor
..we are going to do the v and v treatment...repeat bone marrow in 2 months..she said at me age 74 ...aggressive treatment would be hard for me..do you know anyone who did the v and v and had good results..I am worried I will not go into remission....thank you for your time
Each person with AML will have their own, unique story to tell. You’re just at the beginning of your story with the recent diagnosis of AML and haven’t gotten a treatment plan mapped out for yet. So if you read through some of the stories of my odyssey or other members with their AML journeys, this may not be at all what you experience.
While some of the stories may be intense, we each got through it the same way…one day at a time and life on the other side for most of us is pretty darned good!
Here’s a discussion I started a few years ago where I’m joined by a lot of friends who have gone through AML and onto having a bone marrow transplant. We don’t all need them however! We have plenty of members on medications to hold their disease in check.
When you learn your complete diagnosis and treatment plan I’ll find members who are on the same meds for you to speak with. ☺️
Anyway here’s my story:
My BMT story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another story published by Mayo when I had the honor of meeting a young woman and her family whom I mentored through her transplant. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Besides mentoring on Connect I work through our local cancer center to mentor patients with AML or going on to transplant. Through that association I have developed a friendship with one of the women I mentored. She and I are as close as sisters now. She had AML, but didn’t require a transplant. Her mutations were such that she had a lower risk level of relapse. She is now 3 years post treatment of 5 rounds of chemo and doing great! Back to normal and no signs of disease. So AML runs the gamut. Life holds no guarantees so we do the best we can and enjoy the gift of life every day.
Thanks for this link. My side effects from chemo have been mostly nausea and initially changes in taste buds. Those have both changed over time. I have lost 50 lbs and was overweight so AML was my “wygovia” weight loss treatment of sorts ;-}
I elected NOT to have a Bone Marrow Transplant however my latest Bone Marrow Biopsy showed I am in remission. When I relapse my medical team assures me there are new drugs that they will suggest to get me back into remission. Praying all of us in remission stay there for years to come!
Yes...bone marrow blast 40,% going this week to discuss treatment..I am 74 years old and other than this healthy. I want to thank you for your encouraging words..I would appreciate all the information I can get...you did say you had aml and how long have you been in remission..thank you again.
I’ve been in a durable remission for almost 6 years. Though I did have a bone marrow transplant. The mutations responsible for my AML put me in a higher risk for relapse and the transplant was my only option. I had 85% blasts at the time of diagnosis. I was 65 when this adventure started and now I’m 71, feeling back to 99% normal…active and healthy.
I believe that knowledge is power and it’s important to educate ourselves with information about a diagnosis. But be a little cautious about searching online for AML information. It can be intimidating to read about. Especially looking at statistics. They often don’t reflect patients having treatments. So it can be a bit deceiving. Here are two reputable sources that will at least be helpful with how AML progresses and what can be done to get the disease wrangled into remission or potentially cured.
Don’t be afraid to ask questions of your doctor but as I mentioned it can be helpful to have them written down on your phone or a little notebook to make better use of the appointment time. That way it’s easier to stay on track. Let me know what you find out, ok?
Stay strong, stay positive, you’ve got this!! ☺️
Yes...bone marrow blast 40,% going this week to discuss treatment..I am 74 years old and other than this healthy. I want to thank you for your encouraging words..I would appreciate all the information I can get...you did say you had aml and how long have you been in remission..thank you again.
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Thank you for all the information ..you have been very helpful ...
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1 ReactionHas anyone taken vidaza and venclecta for aml and what results did you have
.and what were the side effects
..thank you..justing looking for some information
Hi @bettersleep68 As we age, some of the meds used to treat AML can be pretty hard on the body. Fortunately there have been great advancements in the field of blood cancers over the past years that are much better tolerated by patients where traditional treatments aren’t an option. They are also used for patient with AML who aren’t candidates for a bone marrow transplant.
There are some awesome success stories with members in the forum. I want you to pop on over to this conversation with @lindagi and @dancouclanel4 along with other members on the same V & V regimen! I think you’ll feel a sense of relief!
AML successful treatment
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
I hope this is helpful. Feel free post your questions over there! When do you start treatment?
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2 ReactionsHello ....went to doctor
..we are going to do the v and v treatment...repeat bone marrow in 2 months..she said at me age 74 ...aggressive treatment would be hard for me..do you know anyone who did the v and v and had good results..I am worried I will not go into remission....thank you for your time
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Like -
Helpful -
Hug
2 ReactionsThank you for the response,..I find out Wednesday what my treatment plan is and will let you know
.....have a great day
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Hug
2 ReactionsEach person with AML will have their own, unique story to tell. You’re just at the beginning of your story with the recent diagnosis of AML and haven’t gotten a treatment plan mapped out for yet. So if you read through some of the stories of my odyssey or other members with their AML journeys, this may not be at all what you experience.
While some of the stories may be intense, we each got through it the same way…one day at a time and life on the other side for most of us is pretty darned good!
Here’s a discussion I started a few years ago where I’m joined by a lot of friends who have gone through AML and onto having a bone marrow transplant. We don’t all need them however! We have plenty of members on medications to hold their disease in check.
When you learn your complete diagnosis and treatment plan I’ll find members who are on the same meds for you to speak with. ☺️
Anyway here’s my story:
My BMT story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another story published by Mayo when I had the honor of meeting a young woman and her family whom I mentored through her transplant.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Besides mentoring on Connect I work through our local cancer center to mentor patients with AML or going on to transplant. Through that association I have developed a friendship with one of the women I mentored. She and I are as close as sisters now. She had AML, but didn’t require a transplant. Her mutations were such that she had a lower risk level of relapse. She is now 3 years post treatment of 5 rounds of chemo and doing great! Back to normal and no signs of disease. So AML runs the gamut. Life holds no guarantees so we do the best we can and enjoy the gift of life every day.
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Like -
Helpful -
Hug
2 ReactionsWould like to hear more stories of your aml journey...I too pray for remission for all of us ..
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Hug
3 ReactionsThanks for this link. My side effects from chemo have been mostly nausea and initially changes in taste buds. Those have both changed over time. I have lost 50 lbs and was overweight so AML was my “wygovia” weight loss treatment of sorts ;-}
I elected NOT to have a Bone Marrow Transplant however my latest Bone Marrow Biopsy showed I am in remission. When I relapse my medical team assures me there are new drugs that they will suggest to get me back into remission. Praying all of us in remission stay there for years to come!
-
Like -
Helpful -
Hug
4 ReactionsI’ve been in a durable remission for almost 6 years. Though I did have a bone marrow transplant. The mutations responsible for my AML put me in a higher risk for relapse and the transplant was my only option. I had 85% blasts at the time of diagnosis. I was 65 when this adventure started and now I’m 71, feeling back to 99% normal…active and healthy.
I believe that knowledge is power and it’s important to educate ourselves with information about a diagnosis. But be a little cautious about searching online for AML information. It can be intimidating to read about. Especially looking at statistics. They often don’t reflect patients having treatments. So it can be a bit deceiving. Here are two reputable sources that will at least be helpful with how AML progresses and what can be done to get the disease wrangled into remission or potentially cured.
Leukemia/lymphoma Society
https://www.lls.org/leukemia/acute-myeloid-leukemia
https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/diagnosis-treatment/drc-20369115
When you learn more from your doctor we can discuss the particulars of the treatment plan if you have any questions. I’m not a doctor but have gleaned a fair amount of knowledge over the past 6 years so I can often add some clarification. ☺️ Right now, since you don’t know what’s being recommended for treatment, it’s too soon to speculate on which type you’ll be having.
Don’t be afraid to ask questions of your doctor but as I mentioned it can be helpful to have them written down on your phone or a little notebook to make better use of the appointment time. That way it’s easier to stay on track. Let me know what you find out, ok?
Stay strong, stay positive, you’ve got this!! ☺️
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Like -
Helpful -
Hug
7 ReactionsYes...bone marrow blast 40,% going this week to discuss treatment..I am 74 years old and other than this healthy. I want to thank you for your encouraging words..I would appreciate all the information I can get...you did say you had aml and how long have you been in remission..thank you again.
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Like -
Helpful -
Hug
2 Reactions