Connect
← Return to My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Discussion
My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 1 day ago | Replies (549)Comment receiving replies
Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together! And yes, between my husband and I, we have 12 Grandchildren, and now have our 1st Great Grandaughter! Our oldest Grand was able to visit with her last month, from California, for her 1st Birthday. We were thrilled! Both adults had to show negative Covid tests within 72 hrs of boarding plane, both to and from Georgia! But it was very special for us to finally meet our precious Great Grand! I double masked for her cake and small "party", and got some great pictures!
And I did have an Autologous SCT. I recieved injections for 4 days, to ramp up my stem cells. Then I had my own Stem Cells "harvested", in one day! (Enough for 2 transplants!). They freeze and keep half, in case I need a second SCT down the road. The process is similar to hemodialysis. These were frozen until transplant! I am so sorry others who have donor transplants, have to go through GVHD. But I have heard of many wonderful outcomes from these, as well! Wishing you the best on your own journey!
I have not been able to work since Cemo induction, July, 2019. I nursed on a busy med-surg unit for 9 years prior to diagnosis. Being only 54 at diagnosis, indeed pulled the rug out from under me! My local Hemotologist/Oncologist, said these words to me: "You have Multiple Myeloma. There is no cure. You will be on Chemo for the rest of your life." That was pretty much all I heard during that entire visit. I was an emotional mess for the first 6 months or so, especially after having progression of disease after the 1st , very rough, 4 months of treatment. But I have adjusted, finally. At this point, I am not sure if I will return to work, or not. It would be part time if at all.
As for the pain, my doctor thinks it may be an ongoing thing. But I have thought that PT may help me learn to strengthen muscles without causing fractures. I am to have a PET scan in April, locally, to check on my bone lesions. These lesions cause a very increased risk of pathological fractures, and compression fractures, even when a patient is in complete response (remission). I am currently in Very Good Partial Response.
(I have multiple lesions throughout my skeleton.) Thank you for mentioning PT!
The maintenance chemo will be ongoing for at least 2 years or more, as long as I remain in good response. If relapse occurs, I will begin another regime of chemo.
The puppy has been a lifesaver! I was so sad and down during the summer. He is so sweet and playful. And loves hugs and belly rubs! ❤ He keeps me moving, with multiple short walks every day. He follows me everywhere around the house! I can not wait to have the Grandchildren here with us like before the pandemic!
Thank you for starting this discussion! Some of the best information I have gotten, is from fellow warriors going through similar battles! It is also comforting to know one is not alone!
Replies to "Thank you, Lori, for your sweet reply! I am glad we have our re-birthdays close together!..."
@lisal64 Hi Lisa, Thought I’d pop in today to see how you’re doing. It’s been a while since we’ve chatted.
Have you had the PET scan yet to check on the condition of your bones? I know it’s like sitting on pins and needles waiting for results sometimes. For your sake, I certainly hope there’s improvement and no new lesions. You’ve been through enough of this!
I have to share this. I know you love dogs and your puppy is a little godsend for you. Our neighbors have a little 8 week Golden!! My heart is now lost... I get to enjoy this little furball now until the time is right for us to get a dog again. So cute!!
Were you able to get your Covid vaccination yet? And, when is the reunion with the Grands?? ☺️
Connect
@lisal64
You have sure been through the ringer since this diagnosis. There’s never an easy way to deliver devastating news like that but there can be more delicate approaches! And you’re right, there are key phrases that just precede everything else in a conversation after the words are delivered! I remember the very off-hand/glib manner my GP told me I had leukemia on the phone. That’s in one of my previous posts. I’ll never forget her callousness.
That same night I was admitted to the hospital where the attending hematologist/oncologist sat holding my hand and telling my husband and me that AML was like a Texas Thunderstorm. One minute the sky is blue and it’s a perfect day. The next moment a storm billows up out of nowhere and all hell breaks loose with a twister! He very calmly and gently told us the statistical odds of survival after my husband asked, which weren’t favorable. Then he said we’re way ahead of ourselves on this! First we launch an all out attack. LOL. He and 4 other oncologists, along with bags of chemo, got me past that first hurdle and ready for the stem cell transplant months later. But his Texas Thunderstorm and kind manner stuck in my head.
I’m so happy for you that you’re in a good place right now with your treatment. I sure hope it keeps on working for you and that your biopsy is clear and PET scan shows improvement! I was thinking about exercises and PT to keep your pain down and bone strength up! Are you able to be in a pool? That might be a good source of gentle exercise for you to build strength and stamina without damaging bones. There’s quite a few websites regarding this. Maybe ask your doctor if this would be a good idea to help keep you mobile.
https://www.spine-health.com/wellness/exercise/water-therapy-exercise-program
Aw, it’s so heartwarming you finally got the chance to meet your little great grand baby after a year! Photos don’t do justice to cuddling a new munchkin! Do most of your family live near you? Or are they scattered all over the country? This virus has us all keeping distance from our loved ones. Hopefully soon enough this gets under control so we can have some great reunions. Our daughter lives 5 hours from us, which isn’t far. But we’ve had to keep our distance for much too long. Video chats, texting and phone calls are great but they don’t replace a hug!
I’m envious of your puppy!! Dogs bring such joy to our lives, don’t they? Our Golden passed 4 years ago. That was devastating. We were finally about ready for another dog when the AML and all those shenanigans popped up. Timing wasn’t good. Now?? Maybe...we’ll see who finds us this time. LOL.
Time to go take on the day. Wishing you a stellar day! Hugs.