1. < Bone Marrow Transplant (BMT) & CAR-T Cell Therapy

Preparing for Bone Marrow Transplant: My mind is racing

Posted by avaleir @avaleir, Jun 22 8:50pm

I have a Bone Marrow work up coming up soon. They will start the pre-transfusion testing July 9-10. I haven't slept I feel nervous, and my mind is racing like crazy. Anyone else had this happen. Like right after I got the good news.
Ava

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mary612 | @mary612 | Jul 31 10:09pm
In reply to @avaleir "Hello all, I am here!! I' been here in the hospital at the Mayo Clini, Jax....." + (show)
@avaleir

Hello all,
I am here!! I' been here in the hospital at the Mayo Clini, Jax.. I'm set for my Transplant this Thursday. I'm getting increased doses of Chemo every two hours. I'm snacking on healthy foods and drinks. That seems to be working to keep any vomiting from happening. My head is no longer racing because the Team here is wonderful. Do worries.

I have housing setup at the Hope Lodge. That portion is all set. Weve had to stay at the Holiday Inn in the area. I've stayed at 3 different holiday inns. Do Note that the two Holiday Inn Express offered free breakfast. But the Holiday Inn did not. However, we needed to add two nights to our stay at the Holiday Inn. Once the front desk found out we were Patients at the Mayo Clinic, they gave us a discount. So, now my husband is here staying in the room at the hospital for the next two nights with me, then he will check in at Hope Lodge.

Food would be a big expense, but now that I'm in the hospital. I'm getting whatever comes with the room. Since I have LapBand, I eat small protons. That leaves a lot of food for my husband able to eat. Also, they've told us after I order my meal, I can order every 45 minutes to the kitchen. Of course, I would never do that. The Hospital unit have nice healthy snacks also. Hope this helps.

Jump to this post

Hi Ava,
My husband is day +50 on Aug 1, also your new re-birth day! He was diagnosed with AML in January this year and thankfully was in remission before his transplant with fully matched donor cells in June.

He spent a month in the hospital and was discharged to home. We go to the clinic once a week for close surveillance for the first 100 days. He has been stable, with only the need for Magnesium IV at home a couple times a week. He had a couple of minor infections right after he returned home but they resolved with antibiotics.

I want you to know you have a community here rooting for you and holding good thoughts for only the best outcomes for you. May your transplant bring you a lifetime of good health.

Please encourage your husband to ask questions of us as caregivers in case he needs any support. Sounds like you both have everything lined up for your lodging and care after the transplant.

Keep eating and enjoying your food as long as you feel like it. You and your husband will find ways to keep you hydrated and nourished even after your appetite wanes. Let us know if you’d like ideas from our experiences with successes and approaches others here have taken to get through that.

Please let us know how you are doing when you have a chance.

Happy Re-birthday!!

Mary

REPLY
katgob | @katgob | Jul 31 11:48pm

Good news Mary. I had two visits a week until i left the hospital. Different hospitals do it different. Once a week for 4 weeks, then every 2 weeks.......not sure then, but a BMB at 6 months. October!!
I am so glad your husband is doing well and the dr team found a solution that worked!!!!

Avaleir. Take it a day at a time. It is seldom as bad as we think, and we are never alone. RNS are there for you. The whole transplant team is. Take lots of deeeeep breaths. The Doctors do this for a living. Many are scientists who look for a cure. The RNS Are there for the human touch. We are here to listen. I am day 113 past transplant. I still need to remind myself that i had a transplant as i feel really good. Going down the google highway is not good. Come here so we can give you good news!

REPLY
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 1 8:10am
In reply to @avaleir "Hello all, I am here!! I' been here in the hospital at the Mayo Clini, Jax....." + (show)
@avaleir

Hello all,
I am here!! I' been here in the hospital at the Mayo Clini, Jax.. I'm set for my Transplant this Thursday. I'm getting increased doses of Chemo every two hours. I'm snacking on healthy foods and drinks. That seems to be working to keep any vomiting from happening. My head is no longer racing because the Team here is wonderful. Do worries.

I have housing setup at the Hope Lodge. That portion is all set. Weve had to stay at the Holiday Inn in the area. I've stayed at 3 different holiday inns. Do Note that the two Holiday Inn Express offered free breakfast. But the Holiday Inn did not. However, we needed to add two nights to our stay at the Holiday Inn. Once the front desk found out we were Patients at the Mayo Clinic, they gave us a discount. So, now my husband is here staying in the room at the hospital for the next two nights with me, then he will check in at Hope Lodge.

Food would be a big expense, but now that I'm in the hospital. I'm getting whatever comes with the room. Since I have LapBand, I eat small protons. That leaves a lot of food for my husband able to eat. Also, they've told us after I order my meal, I can order every 45 minutes to the kitchen. Of course, I would never do that. The Hospital unit have nice healthy snacks also. Hope this helps.

Jump to this post

Good morning, @avaleir! Happy Rebirth-Day! You are joining an elite Chimera Club…having 2 sets of DNA! My husband prefers to use the definition in Greek mythology of a Chimera being a fire-breathing female monster with a lion's head, a goat's body, and a serpent's tail. He feels that is my spirit animal now!! 😂 Nah, but the infusion of donor cells has given me a 2nd chance at life. I’d have been gone 4 years ago by now if not for that amazing gift of life.

So, m’dear, this is a day of CELLebration as you are about to be given your second chance. Wishing you smooth sailing ahead and as you can see, you have a rooting section here with fellow members who have shared this experience. Most recently @katgob and @mary612 (her husband, Dane) and others to follow.
Please keep us updated when you’re feeling up to it. Air hug!

REPLY
avaleir | @avaleir | Aug 12 7:09am
In reply to @tkidd51 "I’m going to Jacksonville once a month now and I have virtual appointments as well. My..." + (show)
@tkidd51

I’m going to Jacksonville once a month now and I have virtual appointments as well. My lab work this past week was normal. I haven’t received my vaccinations yet due to my count is 192 and it has to be above 200. Still taking breathing treatments once a month. I’m off all immunosuppressant drugs… finally. I’m feeling good but I still get really tired and struggling with mouth plus some mental issues. I’m glad to answer any questions. Yes, Mayo has spoiled me!!

Jump to this post

Hello , y’all! I am post day 11. This week has been a challenge, but the Mayo Team has been here above and beyond. I’m feeling a lot better. I’m back to eating soft foods so far. This Mayo is awesome!!♥️♥️im still waiting for a white blood cells to start mutating!!! Avaleir!!

REPLY
1 reply
caregiverx2 | @caregiverx2 | Aug 12 10:46am

@avaleir
I am so glad to hear you are feeling better. The 3rd floor nurses are the best. My husband's transplant day has been postponed by a couple of days, but we will be up there this Friday. Prayers for your new cells to start grafting!

REPLY
louisern | @louisern | Aug 13 3:32pm

Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of May. He also had MDS of low to intermediate risk so was denied stem cell transplant for a year until all other helpful therapies were exhausted. The good thing about that was they had a year to find a great donor match! We are from Hawaii so we needed to find lodging for 3+ months. I"m a nurse and had a friend who turned me on to a website called Furnished Finder, meant for traveling nurse lodging. It's created for rentals of a month or longer, though you can do a "housing request" with any type of message. Many of these places are also on AirBNB or similar websites but Furnished finder does not charge all the fees charged by the short term rental sites. We found a great place, significantly cheaper.
I can also say the medical care here in Rochester is amazing and you are likely to have the same level of care in Jacksonville. I'm not gonna lie, the month after chemo was rough, but got through that and now he is doing great! Dave's MDS affected his red cell production only and eventually he was getting blood transfusions every 10 days-2 weeks. Because of our national blood shortage the hemoglobin level at which they were willing to transfuse him became lower and lower over time until he had to be half dead to qualify. And he developed so many antibodies it became almost impossible to find compatible blood. It was no kind of a life!
So grateful for the care and expertise that has given him his life back!
We have been very carefully following all the guidelines and recommendations. So far no complications! Mayo has great info and support....everything you need to know.
The one thing I would do differently as a caregiver is be careful about buying too much food. When we first arrived here I though I would get all prepared with food that Dave likes. I had no idea that his tastes and tolerances would completely change after chemo. All the things he used to like he was either uninterested in or repulsed by! Many things he never really cared for in the past now appeal to him. He is slowly getting his appetite and sense of taste back but even after 2 months it's not the same. I ended up throwing a lot of food away. Now we just go more day to day on buying and preparing food.
I wish you the very best Ava. You got this!
Louise

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Aug 13 4:37pm
In reply to @louisern "Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of..." + (show)
@louisern

Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of May. He also had MDS of low to intermediate risk so was denied stem cell transplant for a year until all other helpful therapies were exhausted. The good thing about that was they had a year to find a great donor match! We are from Hawaii so we needed to find lodging for 3+ months. I"m a nurse and had a friend who turned me on to a website called Furnished Finder, meant for traveling nurse lodging. It's created for rentals of a month or longer, though you can do a "housing request" with any type of message. Many of these places are also on AirBNB or similar websites but Furnished finder does not charge all the fees charged by the short term rental sites. We found a great place, significantly cheaper.
I can also say the medical care here in Rochester is amazing and you are likely to have the same level of care in Jacksonville. I'm not gonna lie, the month after chemo was rough, but got through that and now he is doing great! Dave's MDS affected his red cell production only and eventually he was getting blood transfusions every 10 days-2 weeks. Because of our national blood shortage the hemoglobin level at which they were willing to transfuse him became lower and lower over time until he had to be half dead to qualify. And he developed so many antibodies it became almost impossible to find compatible blood. It was no kind of a life!
So grateful for the care and expertise that has given him his life back!
We have been very carefully following all the guidelines and recommendations. So far no complications! Mayo has great info and support....everything you need to know.
The one thing I would do differently as a caregiver is be careful about buying too much food. When we first arrived here I though I would get all prepared with food that Dave likes. I had no idea that his tastes and tolerances would completely change after chemo. All the things he used to like he was either uninterested in or repulsed by! Many things he never really cared for in the past now appeal to him. He is slowly getting his appetite and sense of taste back but even after 2 months it's not the same. I ended up throwing a lot of food away. Now we just go more day to day on buying and preparing food.
I wish you the very best Ava. You got this!
Louise

Jump to this post

Hi Louise. You’ve been hiding in the background! 😅 I just realized you joined the forum almost a year and a half ago and this is your first time replying. So I wish you a belated welcome.
Congratulations to your husband on his stem cell transplant. Mayo-Rochester is my home away from home where I received my SCT 5 years ago the end of June. As caregiver, both of you have had a dramatic change in your lives the past year or so with the diagnosis of MDS and then, of course, the transplant relocation and all that excitement!

Thank you for sharing his story and your great tips on lodging, food, etc.. All of the information we share about our experiences can go on to help others more than we realize.
You’re homeward bound soon. Life slowly returns to a new rhythm. Your husband’s appetite will return and so will his stamina. It just takes time. As I said, I’m at the 5 year point and for several years now, I feel as though nothing ever happened. My life is 97% back to normal. I’m more aware of the possibility of infection or illnesses. While a SCT gives us a new immune system it will never be 100% as robust as our ‘factory installed model’ so there are precautions to be mindful about. But life feels more meaningful with that second chance!

A few years ago I started a discussion called;
Snapshots of hope: Life on the other side of transplant.
It’s been fun to see stories of members who have had any kind of transplant and how it has changed their lives. We like to get a ‘snapshot’ of something that wouldn’t have been possible if not for the transplant. When you get back to Hawaii it would be fun to see a photo of your husband enjoying a special moment post transplant!
Here’s the link:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Which island do you call home?

REPLY
1 reply
katgob | @katgob | Aug 13 5:32pm
In reply to @louisern "Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of..." + (show)
@louisern

Hi Ava, my husband received a stem cell transplant at Mayo in Rochester at end of May. He also had MDS of low to intermediate risk so was denied stem cell transplant for a year until all other helpful therapies were exhausted. The good thing about that was they had a year to find a great donor match! We are from Hawaii so we needed to find lodging for 3+ months. I"m a nurse and had a friend who turned me on to a website called Furnished Finder, meant for traveling nurse lodging. It's created for rentals of a month or longer, though you can do a "housing request" with any type of message. Many of these places are also on AirBNB or similar websites but Furnished finder does not charge all the fees charged by the short term rental sites. We found a great place, significantly cheaper.
I can also say the medical care here in Rochester is amazing and you are likely to have the same level of care in Jacksonville. I'm not gonna lie, the month after chemo was rough, but got through that and now he is doing great! Dave's MDS affected his red cell production only and eventually he was getting blood transfusions every 10 days-2 weeks. Because of our national blood shortage the hemoglobin level at which they were willing to transfuse him became lower and lower over time until he had to be half dead to qualify. And he developed so many antibodies it became almost impossible to find compatible blood. It was no kind of a life!
So grateful for the care and expertise that has given him his life back!
We have been very carefully following all the guidelines and recommendations. So far no complications! Mayo has great info and support....everything you need to know.
The one thing I would do differently as a caregiver is be careful about buying too much food. When we first arrived here I though I would get all prepared with food that Dave likes. I had no idea that his tastes and tolerances would completely change after chemo. All the things he used to like he was either uninterested in or repulsed by! Many things he never really cared for in the past now appeal to him. He is slowly getting his appetite and sense of taste back but even after 2 months it's not the same. I ended up throwing a lot of food away. Now we just go more day to day on buying and preparing food.
I wish you the very best Ava. You got this!
Louise

Jump to this post

louisern,
I was also diagnosed at the low-mid for MDS. I was not denied at the COH, but rather encouraged. I had cancer just 2 years before and a TP53 mutation, along with another genetic mutation factoring in the first cancer. We can never know the outcome for anyone. I think your husband having you was a Godsend. A nurse who is resourceful and flexible. Wasted food aside, your footwork for housing and all you wrote is so helpful to so many. The food is the truth. Cancer gets those taste buds and twists them. Still I never ate a pea or a lima bean with or without chemo!
I am amazed so much at the way our research hospitals are so much the same in the procedure, but so varied in the pre and post op care. I need to check the area by the Mayo clinic as i believe it was built for the care you received. COH is building but is not there yet.
I was given 2 choices, to watch and wait and go into the Be a Match registry. I sat there looking at the results from my bone marrow biopsy, listening to the Doctor and my mind said NOW! I am so grateful.
So grateful to that your husband has rounded the corner. I know at 125 plus days past transplant I am as Lori said about 90% normal! I will never be 100% but every day we live healthier by exercising, eating well and living our daily lives.

REPLY
1 reply
louisern | @louisern | Aug 14 10:12pm
In reply to @katgob "louisern, I was also diagnosed at the low-mid for MDS. I was not denied at the..." + (show)
@katgob

louisern,
I was also diagnosed at the low-mid for MDS. I was not denied at the COH, but rather encouraged. I had cancer just 2 years before and a TP53 mutation, along with another genetic mutation factoring in the first cancer. We can never know the outcome for anyone. I think your husband having you was a Godsend. A nurse who is resourceful and flexible. Wasted food aside, your footwork for housing and all you wrote is so helpful to so many. The food is the truth. Cancer gets those taste buds and twists them. Still I never ate a pea or a lima bean with or without chemo!
I am amazed so much at the way our research hospitals are so much the same in the procedure, but so varied in the pre and post op care. I need to check the area by the Mayo clinic as i believe it was built for the care you received. COH is building but is not there yet.
I was given 2 choices, to watch and wait and go into the Be a Match registry. I sat there looking at the results from my bone marrow biopsy, listening to the Doctor and my mind said NOW! I am so grateful.
So grateful to that your husband has rounded the corner. I know at 125 plus days past transplant I am as Lori said about 90% normal! I will never be 100% but every day we live healthier by exercising, eating well and living our daily lives.

Jump to this post

Interesting story! We had a consult at COH and they denied transplant out of hand. Said Dave was too low risk. Different mutations than what you had and he did not have a malignancy so that my have been the difference. At our initial consult the Mayo doctor said he was not eligible for transplant but could be in the future if mitigating therapies failed and his condition worsened. Well, that happened. He had a "single lineage dysplasia" which affected only his ability to make red blood cells. But you can't live without those so the outcome is eventually deadly. Tried several therapies and only one made any difference but it involved a chemo drug that wiped out his immune system so completely that it was life threatening. He had so many blood transfusions it became difficult to find comparable blood with all the antibodies he developed. Finally when there were no more drugs to try they decided he was eligible for transplant.
Thanks for your story and it's so good to hear you are doing great! Live long and prosper!

REPLY
1 reply
louisern | @louisern | Aug 14 10:19pm
In reply to @loribmt "Hi Louise. You’ve been hiding in the background! 😅 I just realized you joined the forum..." + (show)
@loribmt

Hi Louise. You’ve been hiding in the background! 😅 I just realized you joined the forum almost a year and a half ago and this is your first time replying. So I wish you a belated welcome.
Congratulations to your husband on his stem cell transplant. Mayo-Rochester is my home away from home where I received my SCT 5 years ago the end of June. As caregiver, both of you have had a dramatic change in your lives the past year or so with the diagnosis of MDS and then, of course, the transplant relocation and all that excitement!

Thank you for sharing his story and your great tips on lodging, food, etc.. All of the information we share about our experiences can go on to help others more than we realize.
You’re homeward bound soon. Life slowly returns to a new rhythm. Your husband’s appetite will return and so will his stamina. It just takes time. As I said, I’m at the 5 year point and for several years now, I feel as though nothing ever happened. My life is 97% back to normal. I’m more aware of the possibility of infection or illnesses. While a SCT gives us a new immune system it will never be 100% as robust as our ‘factory installed model’ so there are precautions to be mindful about. But life feels more meaningful with that second chance!

A few years ago I started a discussion called;
Snapshots of hope: Life on the other side of transplant.
It’s been fun to see stories of members who have had any kind of transplant and how it has changed their lives. We like to get a ‘snapshot’ of something that wouldn’t have been possible if not for the transplant. When you get back to Hawaii it would be fun to see a photo of your husband enjoying a special moment post transplant!
Here’s the link:
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Which island do you call home?

Jump to this post

Hi Lori, I replied earlier but think I forgot to "send".
we are from the big island of Hawaii, Kona side. Very homesick now that Dave is feeling better and we are needing to spend less time with medical needs. But super grateful for the great medical care here at Mayo. We are aware how important it is to stick it out for the 100 days as the medical care we have back home is pretty sketchy!
Will keep in mind to send a photo of Dave's new life after we return home.

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