I was diagnosed with AML last year in the first week of August. Here it is the end of Feb and the last biopsy I had said I was cancer free. I am still on bag chemo for 4 days a month and home chemo pills for 14 days on and 14 days off. My question is the longer I am on chemo the more things are happening to me. My skin is breaking out in bumps and dry skin. At night my tummy feels like I want to vomit. I haven’t done that yet but depression is setting in and I feel like it’s slowly killing me not just the cancer.
Hi @txsnowbird, Welcome to Mayo Connect. Acute Myeloid Leukemia (AML) is a sneaky one. The cancer cells can be elusive by hiding, they can also morph quickly to evade chemo. That’s why there is often ongoing chemo for several months after the initial induction treatment.
Chemo to treat AML is aggressive. It has to be in order to keep ahead of those creative, aggressive cancer cells. Each monthly cycle of chemo knocks down a few more cells that might be lingering and the goal is, at some point to out-wait or out-wit any cells that are hiding from the chemo.
Unfortunately, the side effects from each subsequent round of treatment can take a toll requiring longer recovery time for your body and may leave your immune system weaker as well. This is possibly why you’re seeing changes in your skin, feeling nauseated and just plain miserable some days. It is depressing and you feel like you’re never going to be normal again.
I had AML, but mutations that caused it to happen required a bone marrow transplant after several rounds of chemo. Not everyone requires that as a last resort.
A good friend, whom I met while mentoring at our local cancer center, has a similar scenario as yours. She went on to have many rounds of chemo. After clean biopsies, she is finally off the meds and is now recovering really well. Her skin and digestive tract are better, she has energy and hair is growing in!
It’s excellent news that your latest biopsy has come back clean! That is a very good sign. Has your hematologist/oncologist talked about when you’ll be able to stop the monthly chemo sessions?
I was diagnosed with AML last year in the first week of August. Here it is the end of Feb and the last biopsy I had said I was cancer free. I am still on bag chemo for 4 days a month and home chemo pills for 14 days on and 14 days off. My question is the longer I am on chemo the more things are happening to me. My skin is breaking out in bumps and dry skin. At night my tummy feels like I want to vomit. I haven’t done that yet but depression is setting in and I feel like it’s slowly killing me not just the cancer.
I agree that chemo for AML is brutal! I had 5 rounds of chemo before I had my transplant. The recovery from each chemo round was slow and I had all the symptoms you described. Your body will recover from those symptoms. Make sure to talk to your doctors about what symptoms management may work for you.
My skin also became very thin and dry. I went through a number of different moisturizers before finding one that worked for me.
While I was recovering from all the treatments, I had to evaluate what I had control over and what was completely out of my hands. (A lot was out of my hands!) My mental recovery started when I began walking. At first, I only had enough energy to walk for 5 minutes. After a few months, it increased to 1,5 hours a day. I was living in Michigan then and did a lot of my walking in my living room, since it was in the middle of winter. I also could focus on nutrition and needing to get more protein into my diet.
Recovery is a long process, but do what you can today to strengthen your body.
Hi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.
Hi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.
Hi @kt2013 and happy 10th Re-birthday! That’s a huge milestone and always so encouraging for those of us younglings who had SCT/BMT. How wonderful that your sister was your donor! I had to laugh about her love of fancy shoes and hot sauce not rubbing off on you. I’m a ‘woman of age’ and my donor was a 20 year old male. My husband was waiting for me to develop an urge for cheap beer, greasy pizza, Axe pit spray and girlie magazines under the bed. 😂 It will be 4 years the end of June and so far, nope!
Welcome to Mayo Connect! There are several of us that I can think of off hand who have had AML and an allo transplant. I’ll tag fellow members @edb1123@alive@tmvanla@tedwueste@waveg@anieke so you can meet them.
I started a discussion you might like to join where a handful of us have shared our transplant stories. Not everyone had AML but we all needed the generosity of a donor to make it through…
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Not sure if you’ve experienced any GVHD in your decade with a new immune system. There is another discussion for those of us with varying levels of that fun side effect. https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/?pg=2
And finally, this group is fun! Feel free to post a photo that wouldn’t be possible without your transplant! ☺️
Snapshots of hope: Life on the other side of transplant https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I feel exactly as you do! At the time of the AML/Transplant I could not imagine the life behind all of that medical drama. But it has been an incredible experience and I feel I’m all the richer for it. I’ve met incredible people, new friends, a respect and admiration for medicine, a strength I didn’t realize I possessed and I found a place in Connect where I can help others along their cancer/transplant odyssey. I’m so happy you’ve joined us as well.
Have you experienced any GVHD?
Hi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.
My friend was recently diagnosed with acute aml leukemia. Might I ask what clinical trial you were enrolled in and where? She is having a real time with this, she is being sent to UCD Davis for a clinical trial and was told by the doctor hat she may only have a few months left. Any info I could pass on would be appreciated. I’m so glad to hear of your outcome there is lots of hope out there. Thank you.
Hi. I am sorry for your friend’s diagnosis. The clinical trial I was on was through the Mayo Clinic and is now completed. It was specifically for patients with the FLT3 genetic mutation. I know there have been many good clinical trials developed in the past 10 years since I was diagnosed. From my experience, I was glad to participate in a clinical trial that might provide me with at least the best treatment available or potentially the next generation of treatment. That made it a win-win decision for me. Please send my best wishes to your friend.
Hi. I am sorry for your friend’s diagnosis. The clinical trial I was on was through the Mayo Clinic and is now completed. It was specifically for patients with the FLT3 genetic mutation. I know there have been many good clinical trials developed in the past 10 years since I was diagnosed. From my experience, I was glad to participate in a clinical trial that might provide me with at least the best treatment available or potentially the next generation of treatment. That made it a win-win decision for me. Please send my best wishes to your friend.
I’m curious about your clinical trial medication too and wondering if I might be the one of the lucky recipients of the results of your test run.
I had AML with the FLT3 mutation along with 2 other mutations and received the standard 7+3 induction for initial treatment. But was also on the abrogating, targeted drug for FLT3 called Midostaurin. It was originally designed for patients with solid tumors but found to be a really solid drug for AML patients with the FLT3 mutation. https://www.nejm.org/doi/full/10.1056/NEJMoa1614359 @jeanadair123 I’m really sorry to hear about your friend’s rough time with this aggressive leukemia. The odds weren’t in my favor either but here I am 4 years later and in a very durable remission from AML. I wish her all the success in the world with this next step. There are several of us here who have had AML and more than willing to talk anytime.
Keep us posted, ok?
I’m curious about your clinical trial medication too and wondering if I might be the one of the lucky recipients of the results of your test run.
I had AML with the FLT3 mutation along with 2 other mutations and received the standard 7+3 induction for initial treatment. But was also on the abrogating, targeted drug for FLT3 called Midostaurin. It was originally designed for patients with solid tumors but found to be a really solid drug for AML patients with the FLT3 mutation. https://www.nejm.org/doi/full/10.1056/NEJMoa1614359 @jeanadair123 I’m really sorry to hear about your friend’s rough time with this aggressive leukemia. The odds weren’t in my favor either but here I am 4 years later and in a very durable remission from AML. I wish her all the success in the world with this next step. There are several of us here who have had AML and more than willing to talk anytime.
Keep us posted, ok?
I am trying on to overstep trying to help right now, just try8ng to give her the info I find to add to the questions for her doctors so she will have an idea of what is available out there and if she would be a candidate? Thanks for your info.
My friend was recently diagnosed with acute aml leukemia. Might I ask what clinical trial you were enrolled in and where? She is having a real time with this, she is being sent to UCD Davis for a clinical trial and was told by the doctor hat she may only have a few months left. Any info I could pass on would be appreciated. I’m so glad to hear of your outcome there is lots of hope out there. Thank you.
I’m so sorry to hear about your friend! I was diagnosed with AML seven years ago. I was not given much time to live unless I received a stem cell transplant. I went through a lot of chemo to prepare me for the transplant. I’m here today because of it.
I did participate in a clinical trial, but it was during the transplant to try to prevent GVHD.
Is stem cell transplant an option for your friend?
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Hi @txsnowbird, Welcome to Mayo Connect. Acute Myeloid Leukemia (AML) is a sneaky one. The cancer cells can be elusive by hiding, they can also morph quickly to evade chemo. That’s why there is often ongoing chemo for several months after the initial induction treatment.
Chemo to treat AML is aggressive. It has to be in order to keep ahead of those creative, aggressive cancer cells. Each monthly cycle of chemo knocks down a few more cells that might be lingering and the goal is, at some point to out-wait or out-wit any cells that are hiding from the chemo.
Unfortunately, the side effects from each subsequent round of treatment can take a toll requiring longer recovery time for your body and may leave your immune system weaker as well. This is possibly why you’re seeing changes in your skin, feeling nauseated and just plain miserable some days. It is depressing and you feel like you’re never going to be normal again.
I had AML, but mutations that caused it to happen required a bone marrow transplant after several rounds of chemo. Not everyone requires that as a last resort.
A good friend, whom I met while mentoring at our local cancer center, has a similar scenario as yours. She went on to have many rounds of chemo. After clean biopsies, she is finally off the meds and is now recovering really well. Her skin and digestive tract are better, she has energy and hair is growing in!
It’s excellent news that your latest biopsy has come back clean! That is a very good sign. Has your hematologist/oncologist talked about when you’ll be able to stop the monthly chemo sessions?
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5 ReactionsI agree that chemo for AML is brutal! I had 5 rounds of chemo before I had my transplant. The recovery from each chemo round was slow and I had all the symptoms you described. Your body will recover from those symptoms. Make sure to talk to your doctors about what symptoms management may work for you.
My skin also became very thin and dry. I went through a number of different moisturizers before finding one that worked for me.
While I was recovering from all the treatments, I had to evaluate what I had control over and what was completely out of my hands. (A lot was out of my hands!) My mental recovery started when I began walking. At first, I only had enough energy to walk for 5 minutes. After a few months, it increased to 1,5 hours a day. I was living in Michigan then and did a lot of my walking in my living room, since it was in the middle of winter. I also could focus on nutrition and needing to get more protein into my diet.
Recovery is a long process, but do what you can today to strengthen your body.
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Like -
Helpful -
Hug
3 ReactionsHi! I am here to share a celebration story. In 2013, I was diagnosed with an aggressive form of AML. I participated in a clinical trial to get the most promising treatment at that time. And I was blessed to have a near perfect match for a stem cell transplant from one of my sisters. She gave me 5+ million healthy white blood cells which became my new immune system. She loves fancy shoes and hot sauce, but I did not get gain those traits.
This year, like every year, I am celebrating another 365 days in gratitude for each sunrise and sunset and every hour in between. When my whole life changed, I could never have imagined the blessings that would follow the worse year of my life. If you need someone to talk to about your AML journey, reach out. I would love to connect with you. Best wishes.
Hi @kt2013 and happy 10th Re-birthday! That’s a huge milestone and always so encouraging for those of us younglings who had SCT/BMT. How wonderful that your sister was your donor! I had to laugh about her love of fancy shoes and hot sauce not rubbing off on you. I’m a ‘woman of age’ and my donor was a 20 year old male. My husband was waiting for me to develop an urge for cheap beer, greasy pizza, Axe pit spray and girlie magazines under the bed. 😂 It will be 4 years the end of June and so far, nope!
Welcome to Mayo Connect! There are several of us that I can think of off hand who have had AML and an allo transplant. I’ll tag fellow members @edb1123 @alive @tmvanla @tedwueste @waveg @anieke so you can meet them.
I started a discussion you might like to join where a handful of us have shared our transplant stories. Not everyone had AML but we all needed the generosity of a donor to make it through…
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Not sure if you’ve experienced any GVHD in your decade with a new immune system. There is another discussion for those of us with varying levels of that fun side effect.
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/?pg=2
And finally, this group is fun! Feel free to post a photo that wouldn’t be possible without your transplant! ☺️
Snapshots of hope: Life on the other side of transplant
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
I feel exactly as you do! At the time of the AML/Transplant I could not imagine the life behind all of that medical drama. But it has been an incredible experience and I feel I’m all the richer for it. I’ve met incredible people, new friends, a respect and admiration for medicine, a strength I didn’t realize I possessed and I found a place in Connect where I can help others along their cancer/transplant odyssey. I’m so happy you’ve joined us as well.
Have you experienced any GVHD?
My friend was recently diagnosed with acute aml leukemia. Might I ask what clinical trial you were enrolled in and where? She is having a real time with this, she is being sent to UCD Davis for a clinical trial and was told by the doctor hat she may only have a few months left. Any info I could pass on would be appreciated. I’m so glad to hear of your outcome there is lots of hope out there. Thank you.
Hi. I am sorry for your friend’s diagnosis. The clinical trial I was on was through the Mayo Clinic and is now completed. It was specifically for patients with the FLT3 genetic mutation. I know there have been many good clinical trials developed in the past 10 years since I was diagnosed. From my experience, I was glad to participate in a clinical trial that might provide me with at least the best treatment available or potentially the next generation of treatment. That made it a win-win decision for me. Please send my best wishes to your friend.
I’m curious about your clinical trial medication too and wondering if I might be the one of the lucky recipients of the results of your test run.
I had AML with the FLT3 mutation along with 2 other mutations and received the standard 7+3 induction for initial treatment. But was also on the abrogating, targeted drug for FLT3 called Midostaurin. It was originally designed for patients with solid tumors but found to be a really solid drug for AML patients with the FLT3 mutation.
https://www.nejm.org/doi/full/10.1056/NEJMoa1614359
@jeanadair123 I’m really sorry to hear about your friend’s rough time with this aggressive leukemia. The odds weren’t in my favor either but here I am 4 years later and in a very durable remission from AML. I wish her all the success in the world with this next step. There are several of us here who have had AML and more than willing to talk anytime.
Keep us posted, ok?
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1 ReactionHi. Happy to share this information. My treatment included alvocidib (formerly flavopiridol), cytarabine, and mitoxantrone (FLAM).
Best regards!
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1 ReactionI am trying on to overstep trying to help right now, just try8ng to give her the info I find to add to the questions for her doctors so she will have an idea of what is available out there and if she would be a candidate? Thanks for your info.
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Hug
2 ReactionsI’m so sorry to hear about your friend! I was diagnosed with AML seven years ago. I was not given much time to live unless I received a stem cell transplant. I went through a lot of chemo to prepare me for the transplant. I’m here today because of it.
I did participate in a clinical trial, but it was during the transplant to try to prevent GVHD.
Is stem cell transplant an option for your friend?
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Hug
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