Thanks for your comments an info yes pretty nervous about it but I have to go for it an stay strong an hopefully come out on other side an yes u have to trust your docs an the team
I also had an allogenic transplant in 2020 to treat AML. I am approaching my 3rd “Rebirthday” and am doing great! I had some bumps along the road since then - high liver enzymes and skin issues due to sun exposure because of my antifungal medication. However, I golf 3-4 days/week and play pickleball! I was fortunate to live 1-1/2 hours from the Mayo Clinic and had a great team there! I am happy to share my experience and answer any questions. I wish you all the best in your treatment!
Well, I promise to stick with you through all of it and I know many others on here will be right along with you. ☺️
One thing that will be required is for you to have a caregiver who will accompany while you recover from the transplant, especially the first few months. Do you live near the clinic that will do the transplant?
Well the main hospital is downtown philly but there is a nice new cancer clinic close to where I live which is where I been goin for blood work an transfusion
I also had an allogenic transplant in 2020 to treat AML. I am approaching my 3rd “Rebirthday” and am doing great! I had some bumps along the road since then - high liver enzymes and skin issues due to sun exposure because of my antifungal medication. However, I golf 3-4 days/week and play pickleball! I was fortunate to live 1-1/2 hours from the Mayo Clinic and had a great team there! I am happy to share my experience and answer any questions. I wish you all the best in your treatment!
Hello @tweetyslp, well, you came to the right place because there are a number of us in the Connect support group who have had AML and we’d love to help you and your husband with this new adventure he’s on.
My diagnosis for AML was 2/6/19 and after several rounds of Chemo to treat that, I received a bone marrow transplant at Mayo Rochester the end of June 2019.
Fellow members, @edb1123@kt2013@alive and several others have also had AML and transplants. We’re all doing really well and here to offer hope and encouragement to anyone who is facing this blood cancer.
If your husband was diagnosed in February, he’s most likely had one or two weeks of chemo. How is he doing with his treatment and has a bone marrow transplant been suggested for him?
I was diagnosed with AML 7 years ago. I had a stem cell transplant 5 months after my diagnosis. I can meet with you virtually to answer any questions you may have about my experience. You are welcome to message me.
Hello @tweetyslp, well, you came to the right place because there are a number of us in the Connect support group who have had AML and we’d love to help you and your husband with this new adventure he’s on.
My diagnosis for AML was 2/6/19 and after several rounds of Chemo to treat that, I received a bone marrow transplant at Mayo Rochester the end of June 2019.
Fellow members, @edb1123@kt2013@alive and several others have also had AML and transplants. We’re all doing really well and here to offer hope and encouragement to anyone who is facing this blood cancer.
If your husband was diagnosed in February, he’s most likely had one or two weeks of chemo. How is he doing with his treatment and has a bone marrow transplant been suggested for him?
Hi to all I have MDs an have 1 round of chemo using Inqovi but drug has really lowered all my counts where I’ve needed several transfusions an am worried my numbers will never go up an if they do they want me to take another cycle which worries me an now they are preparing me for stem cell transplant which is wat I’d like to do an get it over with chemo just seems to make me worse
Hi @yusbe, Welcome to Mayo Connect where you’ll be able to talk with other members who also have been diagnosed multiple myeloma. (MM). You’ll find everyone helpful and willing to share their experiences and offer some encouragement for you and your husband. I know it’s frightening getting a blood cancer diagnosis but there are treatments which can help keep the Multiple Myeloma under control.
Some are older conversations but you can reverse the order to the most recent replies. There is a button under the opening discussion paragraph which says “oldest to newest”. Just click there and the order will provide the newest answers for you.
Feel free to jump into any conversation. If you want to reply directly to a specific comment you’ve read, simply click the blue reply button and that will open a link with that member’s @name so they will get a notification.
These links below are good sources to give you a little more information about MM with how the diagnosis is determined, symptoms and possible treatments.
Your husband was just newly diagnosed so everything feels overwhelming and daunting because you don’t know what to expect. It can really help calm fears when you’re able to talk with other who are going through a similar experience.
Muchas gracias por toda su explicación. El diagnóstico es reciente y aún no determinan la estrategia de tratamiento con la que lucharemos. Vivimos en Cuba y los recursos son escasos. Dios nos ayude a encontrar uno potente que nos dé una esperanza de vida. Trataré de seguir en contacto con usted. Gracias de corazón. Abrazo a todos desde Cuba.
Hi Howard, If I remember correctly I think you had the first round of chemo beginning March 20 so that means you’re getting ready for another session in a few days. Usually with monthly chemo, we start feeling pretty good again by the end of the month, just in time for that second round. I know…not something to look forward to, but at least now you know that there’s a recovery period. 😊
How are you feeling? Have you had any bloodwork done to see if there’s a change in you numbers?
Hi not feeling great blood numbers very low an continue to get many transfusions so in my opinion the chemo hasn’t gone on upswing yet which worries me an thought of taking it again an putting me in Pancytopenia is not one I’m lookin forward tp
Muchas gracias por toda su explicación. El diagnóstico es reciente y aún no determinan la estrategia de tratamiento con la que lucharemos. Vivimos en Cuba y los recursos son escasos. Dios nos ayude a encontrar uno potente que nos dé una esperanza de vida. Trataré de seguir en contacto con usted. Gracias de corazón. Abrazo a todos desde Cuba.
@yusbe Hopefully there will be a treatment plan soon for your husband. There are medications which can help but sadly, I don’t know if they are available in your country. It is not a rare condition so there may be others who have multiple myeloma in Cuba and his doctors may be familiar with this.
I’ll be sending prayers right along with you that your husband will be ok and that he can get the help he needs to stay as healthy as possible. Please do keep in touch…it helps to not feel alone when dealing with a frightening diagnosis. Take care and a huge hug for you and your husband.
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I also had an allogenic transplant in 2020 to treat AML. I am approaching my 3rd “Rebirthday” and am doing great! I had some bumps along the road since then - high liver enzymes and skin issues due to sun exposure because of my antifungal medication. However, I golf 3-4 days/week and play pickleball! I was fortunate to live 1-1/2 hours from the Mayo Clinic and had a great team there! I am happy to share my experience and answer any questions. I wish you all the best in your treatment!
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3 ReactionsWell the main hospital is downtown philly but there is a nice new cancer clinic close to where I live which is where I been goin for blood work an transfusion
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1 ReactionSounds great where I hope I will be thanks hopfully my team at Jefferson hospital in philly is good as they say
Hello,
My husband has AML, recently as of 2/20/23. We are wondering if there is a virtual support group out there. I have not been able to find one.
Hello @tweetyslp, well, you came to the right place because there are a number of us in the Connect support group who have had AML and we’d love to help you and your husband with this new adventure he’s on.
My diagnosis for AML was 2/6/19 and after several rounds of Chemo to treat that, I received a bone marrow transplant at Mayo Rochester the end of June 2019.
Fellow members, @edb1123 @kt2013 @alive and several others have also had AML and transplants. We’re all doing really well and here to offer hope and encouragement to anyone who is facing this blood cancer.
If your husband was diagnosed in February, he’s most likely had one or two weeks of chemo. How is he doing with his treatment and has a bone marrow transplant been suggested for him?
I was diagnosed with AML 7 years ago. I had a stem cell transplant 5 months after my diagnosis. I can meet with you virtually to answer any questions you may have about my experience. You are welcome to message me.
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1 ReactionHi to all I have MDs an have 1 round of chemo using Inqovi but drug has really lowered all my counts where I’ve needed several transfusions an am worried my numbers will never go up an if they do they want me to take another cycle which worries me an now they are preparing me for stem cell transplant which is wat I’d like to do an get it over with chemo just seems to make me worse
Muchas gracias por toda su explicación. El diagnóstico es reciente y aún no determinan la estrategia de tratamiento con la que lucharemos. Vivimos en Cuba y los recursos son escasos. Dios nos ayude a encontrar uno potente que nos dé una esperanza de vida. Trataré de seguir en contacto con usted. Gracias de corazón. Abrazo a todos desde Cuba.
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Hi not feeling great blood numbers very low an continue to get many transfusions so in my opinion the chemo hasn’t gone on upswing yet which worries me an thought of taking it again an putting me in Pancytopenia is not one I’m lookin forward tp
@yusbe Hopefully there will be a treatment plan soon for your husband. There are medications which can help but sadly, I don’t know if they are available in your country. It is not a rare condition so there may be others who have multiple myeloma in Cuba and his doctors may be familiar with this.
I’ll be sending prayers right along with you that your husband will be ok and that he can get the help he needs to stay as healthy as possible. Please do keep in touch…it helps to not feel alone when dealing with a frightening diagnosis. Take care and a huge hug for you and your husband.
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