Anyone go through duv/romi treatment before an allogenic BMT?

@loribmt Hi Lori,
Wanted to give you and @coloradored @bizzylizzy a little update.
My stem cell collection was unsuccessful. They just couldn't collect enough even with 4 days of shots.
My doctor informed me an autologous is no longer an option. I'm ok with this, but talk about a complete derailment of plans.
She said allogeneic is where we are now. I will meet with another Mayo oncologist that specializes in allo. I know nothing more than this is my next option- whether now or down the road.
I am absolutely terrified of doing the allogeneic. Terrified.
Lori, I know you have had the
allo. Would you mind giving me a rundown and if you encountered many GVHD complications?
I never saw this coming. At least I am in remission 🤍

@loribmt Hi Lori,
Wanted to give you and @coloradored @bizzylizzy a little update.
My stem cell collection was unsuccessful. They just couldn't collect enough even with 4 days of shots.
My doctor informed me an autologous is no longer an option. I'm ok with this, but talk about a complete derailment of plans.
She said allogeneic is where we are now. I will meet with another Mayo oncologist that specializes in allo. I know nothing more than this is my next option- whether now or down the road.
I am absolutely terrified of doing the allogeneic. Terrified.
Lori, I know you have had the
allo. Would you mind giving me a rundown and if you encountered many GVHD complications?
I never saw this coming. At least I am in remission 🤍

@loribmt Hi Lori,
Wanted to give you and @coloradored @bizzylizzy a little update.
My stem cell collection was unsuccessful. They just couldn't collect enough even with 4 days of shots.
My doctor informed me an autologous is no longer an option. I'm ok with this, but talk about a complete derailment of plans.
She said allogeneic is where we are now. I will meet with another Mayo oncologist that specializes in allo. I know nothing more than this is my next option- whether now or down the road.
I am absolutely terrified of doing the allogeneic. Terrified.
Lori, I know you have had the
allo. Would you mind giving me a rundown and if you encountered many GVHD complications?
I never saw this coming. At least I am in remission 🤍

@loribmt Today is the initial meeting with the transplant team, conditioning scheduled for the end of February, with transplant day early March. I'm a little apprehensive but ready to move ahead

@alxlo1 Just checking in with you to see where you are on the transplant schedule. From what you mentioned earlier I think it must be very soon. Please know that I’m here for you any time if you have questions or need a pep talk! ☺️
When is Day 0?

Good morning, @thenester.
Ohh goodness, “Terrified” is such an intense word! I hope with the help of some of my BMT (allogeneic bone marrow transplant) friends here we can help you feel less fearful of the procedure and recovery.
While you’re no longer able to have the autologous transplant using your own cells, there still may be the option of the allogeneic tranpslant using donor blood stem cells.

The upside, there are long term benefits to having the allo transplant such as you’re less likely to have a repeat transplant than with the auto. Your current immune system is no longer recognizing cancer cells responsible for your diagnosis. By clearing out your bone marrow, basically the heart of the immune, your current blood stem cells and defective lymph system will be purged. The newly donated blood stem cells from a donor, should restore a healthy immune system to you once again. However, it will never be quite as robust as the ‘factory installed model’ but still very effective.

GVHD (graft vs host disease) is a potential downside to having an allo transplant. However, it is that very effect of ‘graft vs leukemia or graft vs tumor’ that makes this type of transplant successful. So it’s important to have some reaction to the transplant. There have been advancements in preempting some of the more severe complications of GVHD during the recovery period. Mayo Clinic has been at the forefront of this mitigating program for several years having introduced the new protocol a couple of years after my transplant.
When I had my transplant, like @alive, I fully trusted my doctor and his team to keep me safe and healthy. They wanted a successful outcome as much as I did.
I had the same concerns you have about gvhd. My doctor and his team were very upfront telling me about potential gvhd side effects. Bottom line: They couldn’t tell me what, where or when or if it would happen but that IF it did occur they’d handle it! And they did! I’m coming up on 7 years post transplant, feel as though nothing ever happened and enjoying my life…that I wouldn’t have if not for the transplant. I’d have been gone 6 years ago.

The fact that you’re in remission now is fabulous. If a BMT is warranted and you’re a good candidate this may be a preferred time for the transplant. But that’s a discussion to have with a transplant doctor. I know you’re apprehensive, but this is a potential gift of a second chance at life…it has the potential to keep you in a durable remission.

Do you have an appointment with a transplant doctor yet? I can’t remember, are you in Phoenix?

@loribmt conditioning starts next week, transplant scheduled for March 8. So far all test results have been good. Looking forward to zero day

@loribmt Thank you for this hopeful message. My situation is a bit different (myelofibrosis), but have been reading about GVHD and trying to make sure I am as prepared as possible to optimize my health through the transplant that is supposed to take place this summer. Any insights about the process and / or things to do or not do are appreciated. Thanks again

Good morning, @thenester.
Ohh goodness, “Terrified” is such an intense word! I hope with the help of some of my BMT (allogeneic bone marrow transplant) friends here we can help you feel less fearful of the procedure and recovery.
While you’re no longer able to have the autologous transplant using your own cells, there still may be the option of the allogeneic tranpslant using donor blood stem cells.

The upside, there are long term benefits to having the allo transplant such as you’re less likely to have a repeat transplant than with the auto. Your current immune system is no longer recognizing cancer cells responsible for your diagnosis. By clearing out your bone marrow, basically the heart of the immune, your current blood stem cells and defective lymph system will be purged. The newly donated blood stem cells from a donor, should restore a healthy immune system to you once again. However, it will never be quite as robust as the ‘factory installed model’ but still very effective.

GVHD (graft vs host disease) is a potential downside to having an allo transplant. However, it is that very effect of ‘graft vs leukemia or graft vs tumor’ that makes this type of transplant successful. So it’s important to have some reaction to the transplant. There have been advancements in preempting some of the more severe complications of GVHD during the recovery period. Mayo Clinic has been at the forefront of this mitigating program for several years having introduced the new protocol a couple of years after my transplant.
When I had my transplant, like @alive, I fully trusted my doctor and his team to keep me safe and healthy. They wanted a successful outcome as much as I did.
I had the same concerns you have about gvhd. My doctor and his team were very upfront telling me about potential gvhd side effects. Bottom line: They couldn’t tell me what, where or when or if it would happen but that IF it did occur they’d handle it! And they did! I’m coming up on 7 years post transplant, feel as though nothing ever happened and enjoying my life…that I wouldn’t have if not for the transplant. I’d have been gone 6 years ago.

The fact that you’re in remission now is fabulous. If a BMT is warranted and you’re a good candidate this may be a preferred time for the transplant. But that’s a discussion to have with a transplant doctor. I know you’re apprehensive, but this is a potential gift of a second chance at life…it has the potential to keep you in a durable remission.

Do you have an appointment with a transplant doctor yet? I can’t remember, are you in Phoenix?

@loribmt we are going today for our 3 yr post transplant. Getting the who who’s testing today to see the levels. My husband talked with his donor on the actual day for the 3 yr mark. It was nice to be able to thank him. Please anyone who has a chance for a BMT go for it. Yes he would have probably been gone had he not gotten this second chance at life. Not saying the road is easy but worth it. They say a little GVHD is good like you said it helps out with the process. Hope we can also make it to 7 yrs. Thanks Lori for the encouragement. 🙏