My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

@anitasharma

Good day. Thank you for updating us. One year nearly. It is amazing how time passes and the transplant portion takes a back seat to todays this and that. I feel sometimes i need to change my habits to see why something is happening. I have gotten up most days at 5am since my transplant. Living in So Cal, early gets me outside and moving.
I just went in my portal and saw i had education topics to read before my treatments. I never read them.
I note on one it says to track energy levels. When might i do most activities. Always keep your transplant team informed.

Because of my osteopenia diagnosis i am on Vitamin D, Pharmacy strength. Drisdol i think and i take it once a week.
Drisdol is a prescription form of vitamin D2 (ergocalciferol) used to treat vitamin D deficiency-related conditions such as hypoparathyroidism, rickets, and hypophosphatemia.
Uses
Drisdol is primarily prescribed to treat hypoparathyroidism, a condition where the parathyroid glands do not function properly, leading to low calcium levels in the blood. It is also used for rickets, a disease characterized by softening of the bones due to vitamin D deficiency, and familial hypophosphatemia, which involves low phosphate levels in the blood. Additionally, Drisdol may be used for other conditions as determined by a healthcare provider.
I was not aware Vitamin D had other uses. Maybe Lori or another monitor knows. I will search on mayo today.
-------------------------------------------------------------------------
IMPORTANT

TODAY is my 2-year Birthday!! My transplant of cells was on April 9th, 2024. I am not sure if i had gone to another hospital if it would be the same results. My research study for GVHD is likely why i have had few bad side effects. Side effects i have now originated with my breast surgery. Neuropathy, dry skin, brittle nails and blood clots. Estrogen loss and chemo plus a body that makes blood clots.

I am grateful to be doing as well as i am.

@anitasharma

Good day. Thank you for updating us. One year nearly. It is amazing how time passes and the transplant portion takes a back seat to todays this and that. I feel sometimes i need to change my habits to see why something is happening. I have gotten up most days at 5am since my transplant. Living in So Cal, early gets me outside and moving.
I just went in my portal and saw i had education topics to read before my treatments. I never read them.
I note on one it says to track energy levels. When might i do most activities. Always keep your transplant team informed.

Because of my osteopenia diagnosis i am on Vitamin D, Pharmacy strength. Drisdol i think and i take it once a week.
Drisdol is a prescription form of vitamin D2 (ergocalciferol) used to treat vitamin D deficiency-related conditions such as hypoparathyroidism, rickets, and hypophosphatemia.
Uses
Drisdol is primarily prescribed to treat hypoparathyroidism, a condition where the parathyroid glands do not function properly, leading to low calcium levels in the blood. It is also used for rickets, a disease characterized by softening of the bones due to vitamin D deficiency, and familial hypophosphatemia, which involves low phosphate levels in the blood. Additionally, Drisdol may be used for other conditions as determined by a healthcare provider.
I was not aware Vitamin D had other uses. Maybe Lori or another monitor knows. I will search on mayo today.
-------------------------------------------------------------------------
IMPORTANT

TODAY is my 2-year Birthday!! My transplant of cells was on April 9th, 2024. I am not sure if i had gone to another hospital if it would be the same results. My research study for GVHD is likely why i have had few bad side effects. Side effects i have now originated with my breast surgery. Neuropathy, dry skin, brittle nails and blood clots. Estrogen loss and chemo plus a body that makes blood clots.

I am grateful to be doing as well as i am.

@katgob Wishing you a hearty congratulations and all the best wishes on your 2 year transplant birthday! Wow! My husband and I are thrilled for you. We are approaching his 2nd transplant birthday on June 12! Thankful for each and every day and of course, his donor in Germany.
Sending big hugs!
Mary and Dane

@katgob Wishing you a hearty congratulations and all the best wishes on your 2 year transplant birthday! Wow! My husband and I are thrilled for you. We are approaching his 2nd transplant birthday on June 12! Thankful for each and every day and of course, his donor in Germany.
Sending big hugs!
Mary and Dane

@katgob
Hello, I just wanted to mention that I have osteoporosis and osteopenia, at least in part due to the high steroids I was taking for months to treat my skin GVHD. I will have another DEXA in one week so I will get a recent update but in addition to all of my hiking and weight lifting I’ve been using a device called Osteoboost, an FDA approved vibration device to treat/prevent bone loss. If it sounds of interest to you just Google it and it will give you the information. Congratulations on your Cell-abration! We all rise together. ❤️

Hi @mary612 and Dane! You two didn’t escape unnoticed. LOL. You’ve been on my mind a lot lately and I meant to write a message to see how everything is going! The day starts with good intentions and then…off my brain goes in another direction! 😂
I hope everything is going well for both of you and life has resumed a normal rhythm. And your little grandson is coming up on his 2nd birthday! You had so much excitement 2 years ago around this time!
So, how IS Dane feeling? Is he still in treatment maintenance meds?

Hello @loribmt !
So good to connect with you again! We are thrilled you also continue to feel good and do amazing things here for so many of us!
Dane completed 19 cycles of maintenance treatment in March. He is at the point where his veins are irritated from the monthly, week long infusions, and he is tired of feeling nauseated for a week to ten days per month. It’s been a lot. He continues to be in full remission (MRD negative), thank God. Strong chimerism and all labs have been very stable. He has great energy (he walked 7 miles yesterday!) but the maintenance treatment is taking its toll. The docs continue to remind us they have no large scale studies to confirm that the maintenance treatment is doing more good than potential harm. They remind us that he had a very high risk mutation and it is rare to boot. His doc has one other patient, a young woman, who had the same mutation, who did not have the option of maintenance treatment 6 years ago and she is doing well. It’s a gamble that Dane continues to wrestle with. They recommended 24 cycles (MD Anderson and Northwestern) so he’s close. But he may not go through with all of them. As you can imagine, we spend many hours discussing this!
He’s also dealt with RSV in January and completely recovered, again thankfully. Just this week he came down with a mild case of human pneumovirus while traveling to Florida (something they swab for when you present with a cough) and the have him on antibiotics just to be safe. He’s doing well and his immune system seems to be working well. He wears a mask in any crowds and he avoids crowds when he can.
It’s very exciting to get closer to his 2 year anniversary. He is planning a fishing trip to Alaska with his son in June. We have a new grand daughter who was just born in Paris! Our grandsons are growing fast and yes throne Ben just after Dane’s transplant will be 2 years old! I’ll go meet my new granddaughter at the end of this month in Paris, exciting!

We are considering taking a cruise along the Maine coast in August on a very small ship…. well before cold and flu season. The docs remind us that he didn’t go through all this treatment not to live his life so they tell him he can travel while also being careful (masking and hand washing).
So the roller coaster ride of life continues!
Thank you for being on this ride with us. It helps so much, especially when you don’t feel alone on this sometimes bumpy ride.
Sending big hugs!
Mary and Dane

Hello @loribmt !
So good to connect with you again! We are thrilled you also continue to feel good and do amazing things here for so many of us!
Dane completed 19 cycles of maintenance treatment in March. He is at the point where his veins are irritated from the monthly, week long infusions, and he is tired of feeling nauseated for a week to ten days per month. It’s been a lot. He continues to be in full remission (MRD negative), thank God. Strong chimerism and all labs have been very stable. He has great energy (he walked 7 miles yesterday!) but the maintenance treatment is taking its toll. The docs continue to remind us they have no large scale studies to confirm that the maintenance treatment is doing more good than potential harm. They remind us that he had a very high risk mutation and it is rare to boot. His doc has one other patient, a young woman, who had the same mutation, who did not have the option of maintenance treatment 6 years ago and she is doing well. It’s a gamble that Dane continues to wrestle with. They recommended 24 cycles (MD Anderson and Northwestern) so he’s close. But he may not go through with all of them. As you can imagine, we spend many hours discussing this!
He’s also dealt with RSV in January and completely recovered, again thankfully. Just this week he came down with a mild case of human pneumovirus while traveling to Florida (something they swab for when you present with a cough) and the have him on antibiotics just to be safe. He’s doing well and his immune system seems to be working well. He wears a mask in any crowds and he avoids crowds when he can.
It’s very exciting to get closer to his 2 year anniversary. He is planning a fishing trip to Alaska with his son in June. We have a new grand daughter who was just born in Paris! Our grandsons are growing fast and yes throne Ben just after Dane’s transplant will be 2 years old! I’ll go meet my new granddaughter at the end of this month in Paris, exciting!

We are considering taking a cruise along the Maine coast in August on a very small ship…. well before cold and flu season. The docs remind us that he didn’t go through all this treatment not to live his life so they tell him he can travel while also being careful (masking and hand washing).
So the roller coaster ride of life continues!
Thank you for being on this ride with us. It helps so much, especially when you don’t feel alone on this sometimes bumpy ride.
Sending big hugs!
Mary and Dane

@mary612 - I’m sorry to be nosey but what was his rare mutation? I have Myelofibrosis with MPL as the driver- only 9% Myelofibrosis is MPL and with a SRSF2 mutation- very rare. Thank you