I had to have aback procedure and did not start oral meds. Had one round and to start again next Monday. Do not like any of this.
Hope my back clears up ..almost too much to deal with I pray everyday..just down and out now
I had to have aback procedure and did not start oral meds. Had one round and to start again next Monday. Do not like any of this.
Hope my back clears up ..almost too much to deal with I pray everyday..just down and out now
Oh gosh, I wish I could reach through the computer this morning and give you a gentle hug. You surely didn’t need to have back issues tossed in on top of the AML treatments! I’m so sorry you’re having to deal with all of this at one time…it’s no wonder you’re feeling overwhelmed.
In the darkest moments, I found the strength within me to keep fighting. You can do this too! I know it’s the last thing you feel like doing, but if you can find even small moments during each day that bring you joy, a sense of peace or calmness, it can help to recharge your soul. Watch and listen to birds from your window. Take a little walk if you’re able. Watch a funny tv show, talk with a friend, admire the beauty of frost on the window… You are strong, resilient and will get through this rough stretch of road. And when you do, you’ll reflect back on the amazing inner strength you found to get you through each day.
Sending my annoyingly perky vibes of strength and healing for you! ☺️ Will you let me know how you’re feeling after treatment on Monday? (But you don’t have to wait until then…I’m here for you any time!)
I had to have aback procedure and did not start oral meds. Had one round and to start again next Monday. Do not like any of this.
Hope my back clears up ..almost too much to deal with I pray everyday..just down and out now
Yes. Vidaza of 100 MG x 3 days + 7 days ventecolax every 28 days. Full strength vidaza over 5 days was burning me up....so we looked for a sweet spot. Soooo grateful for my team and God. He has other plans for me.
That’s excellent news! There have been so many positive changes in the advancement for treating MDS and AML over the past years. I had AML 6 years ago but was fortunately able to have a bone marrow transplant at 65. That’s not always available as we age. So having these newer meds that are better tolerated has really given a rare gift of time when otherwise no treatment options were available!
So glad you found the sweet spot of Vidaza and here to offer encouragement to so many others going through AML/MDS!
Got 2 shots in abd....the pill is still going thru my insurance..had some vomiting when I got home..tummy is sore. One down and four more to go then 28 day break..thanks for caring
Yes. Vidaza of 100 MG x 3 days + 7 days ventecolax every 28 days. Full strength vidaza over 5 days was burning me up....so we looked for a sweet spot. Soooo grateful for my team and God. He has other plans for me.
I have had MDS/AML IN December 2023 with 26% blasts, admitted to hospital for month leaving with astounding results. AML is no game. OS was less than a year. I'm now on my 15th cycle with AML in remission as of September 2024. MDS persists. My oncologist and care team at OCSRI Tulsa OK are top of the line. Blood #s are up and exceeding parameters which is another story.....but NO BLASTS!! I'm 80 years old and love a good fight. 👍
Love this story, @dancouclanel4! You’re having amazing success with your treatment for AML. Going from 26% blasts to 0% and holding is miraculous! A little joke one of my doctors and I shared was, “Life is a blast until you find them in your blood.” Only a handful of us understand the nuances of that little anecdote.
Are you on cycles of Vidaza (azacitidine) and Venetoclax?
I have had MDS/AML IN December 2023 with 26% blasts, admitted to hospital for month leaving with astounding results. AML is no game. OS was less than a year. I'm now on my 15th cycle with AML in remission as of September 2024. MDS persists. My oncologist and care team at OCSRI Tulsa OK are top of the line. Blood #s are up and exceeding parameters which is another story.....but NO BLASTS!! I'm 80 years old and love a good fight. 👍
Hello @nicollissa and welcome to Connect! Thank you for sharing so much with @dell060969 regarding your AML diagnosis, your words of encouragement and your willingness to answer and questions Dell has. I especially appreciated your tips on how to recognize and avoid depression while going through treatment.
@nicollissa, right off the bat you mentioned something that caught my eye, hemophilia. If you are comfortable sharing a bit more about yourself, were you born with hemophilia or were you told that because your platelets were so low that you had hemophilia like symptoms of bleeding risk? I only ask because hemophilia is a genetic disorder and believe it or not, I am actually a hemophiliac! Naturally, my ears always perk up a bit when I hear or see that words because it is a rare disease and I don't ever meet many people with hemophilia. Even if you were not diagnosed with hemophilia but experienced hemophilia like symptoms, I can certainly relate to that part of your experience.
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Justin, my reason for being on the discussion page my husband has MF, so one page leads to another. My husband has dear first cousins that are hemophiliacs. You probably all ready know this, hemophilia is passed thru females to their male children. It doesn’t mean every male child will have it or every female will pass it on. His cousins were tested to find which girls carry and boys would have it. He had a dear cousin that lived a sheltered life his family always afraid he would get hurt somehow, after he grew up he decided he would live his life to the fullest. Which he did, he died at the age of 75 for something else.
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I will be praying for you for rest. Peace and hope. With God all things are possible. Just trust him.
Thank you
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1 ReactionOh gosh, I wish I could reach through the computer this morning and give you a gentle hug. You surely didn’t need to have back issues tossed in on top of the AML treatments! I’m so sorry you’re having to deal with all of this at one time…it’s no wonder you’re feeling overwhelmed.
In the darkest moments, I found the strength within me to keep fighting. You can do this too! I know it’s the last thing you feel like doing, but if you can find even small moments during each day that bring you joy, a sense of peace or calmness, it can help to recharge your soul. Watch and listen to birds from your window. Take a little walk if you’re able. Watch a funny tv show, talk with a friend, admire the beauty of frost on the window… You are strong, resilient and will get through this rough stretch of road. And when you do, you’ll reflect back on the amazing inner strength you found to get you through each day.
Sending my annoyingly perky vibes of strength and healing for you! ☺️ Will you let me know how you’re feeling after treatment on Monday? (But you don’t have to wait until then…I’m here for you any time!)
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Like -
Helpful -
Hug
2 ReactionsI had to have aback procedure and did not start oral meds. Had one round and to start again next Monday. Do not like any of this.
Hope my back clears up ..almost too much to deal with I pray everyday..just down and out now
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Like -
Helpful -
Hug
1 ReactionThat’s excellent news! There have been so many positive changes in the advancement for treating MDS and AML over the past years. I had AML 6 years ago but was fortunately able to have a bone marrow transplant at 65. That’s not always available as we age. So having these newer meds that are better tolerated has really given a rare gift of time when otherwise no treatment options were available!
So glad you found the sweet spot of Vidaza and here to offer encouragement to so many others going through AML/MDS!
Thought it was time to check in with you to see how treatment is going for the AML. Are you coming up on your next round soon?
Yes. Vidaza of 100 MG x 3 days + 7 days ventecolax every 28 days. Full strength vidaza over 5 days was burning me up....so we looked for a sweet spot. Soooo grateful for my team and God. He has other plans for me.
-
Like -
Helpful -
Hug
4 ReactionsLove this story, @dancouclanel4! You’re having amazing success with your treatment for AML. Going from 26% blasts to 0% and holding is miraculous! A little joke one of my doctors and I shared was, “Life is a blast until you find them in your blood.” Only a handful of us understand the nuances of that little anecdote.
Are you on cycles of Vidaza (azacitidine) and Venetoclax?
-
Like -
Helpful -
Hug
3 ReactionsI have had MDS/AML IN December 2023 with 26% blasts, admitted to hospital for month leaving with astounding results. AML is no game. OS was less than a year. I'm now on my 15th cycle with AML in remission as of September 2024. MDS persists. My oncologist and care team at OCSRI Tulsa OK are top of the line. Blood #s are up and exceeding parameters which is another story.....but NO BLASTS!! I'm 80 years old and love a good fight. 👍
-
Like -
Helpful -
Hug
3 ReactionsJustin, my reason for being on the discussion page my husband has MF, so one page leads to another. My husband has dear first cousins that are hemophiliacs. You probably all ready know this, hemophilia is passed thru females to their male children. It doesn’t mean every male child will have it or every female will pass it on. His cousins were tested to find which girls carry and boys would have it. He had a dear cousin that lived a sheltered life his family always afraid he would get hurt somehow, after he grew up he decided he would live his life to the fullest. Which he did, he died at the age of 75 for something else.