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

Welcome to Connect, @wefarm2. Thank you for sharing your challenging story about your two transplants. Multiple myeloma can be difficult to treat. Some patients to well with the stem cell transplant using their own cells. But as you found, there can be a reappearance of the cancerous cells and sometimes a subsequent stem cell transplant. I’m sorry you had such a rough go of things…on multiple levels. Those memories weigh heavily on the mind!

Was your second transplant with using donor cells or were they your own again?

I have multiple myeloma. An incurable cancer. My oncologist used the Mayo protocol for treating my cancer until my body had rejected every chemo drug available. I had instinctively know that my life was …ending, but my husband was in total disbelief when my oncologist made the announcement that there was no more he could do. Even though I had been a patient since my cancer was in the infancy stages, stem cell/bone marrow transplants were never an option. My oncologist had always told me that if I wanted to be referred to another doctor just say the word. I pulled that card out and made my request. I was ultimately referred to Northwestern University Hospital in downtown Chicago and specifically to a Dr Mehta. I was surprised to be able to get an appointment in about two weeks from my request. It was during my initial visit that I was told not only was I a candidate for a transplant, but he intended to use my stem cells! When I returned the next month my procedure was scheduled. I had my first transplant just prior to Thanksgiving 2014. I breezed through it and within two weeks I returned home. I was incredibly weak, but gave thanks for a chance to continue living. The doctor was encouraging when I saw him next, but by January he dropped a bomb: I needed to have another transplant ASAP in order to kill the remaining cancer cells. I was devastated and knew my body had not recovered enough from the initial procedure. It was with great trepidation that I entered the hospital in March of 2015. I truly believed I would never go home again. My transplant, or new birthday, was on St Patrick’s Day. The transplant process itself is not particularly difficult, but your body’s reaction to the high powered chemo given prior can be. These drugs basically killed me as my bone marrow was destroyed and then afterwards I would be given nutrients to rebuild my system. The process is miraculous! I thought I was progressing nicely as I went to sleep on day two or three after the transplant, but then my world turned sideways! When I next woke up I had something threaded down my nose and IV trees surrounded my bed. I didn’t understand what had happened and learned I had been “sleeping” for several days. I was only awake for a few minutes and then slumbered once more. The next time I awakened I discovered that I had no control over my bodily functions . I was entirely too weak to be overly humiliated by this and continued to drift in and out of consciousness for at least a week. I had a wonderful medical team helping me through the next weeks. Yes, I said WEEKS. This hospitalization lasted for two months. My family lived four hours away and my husband was entering his busy season as a farmer, so most of my days passed in solitude. He came once or twice a week for 24-36 hours and then needed to return to our home in West Central Illinois. My progress was painstakingly slow. I had zero strength and moving my body in any way was difficult. It was decided that I would need to go to a special rehab facility once I was released and it took quite some time arranging this. I was finally released to a hospital closer to my home that specialized in the treatment I needed. I had been steadily rehabilitating myself, however. As I lay in bed I flexed my muscles in ways that were strengthening them. I learned to dress myself, sit on the side of the bed, and walk in my room using a walker . I progressed rapidly once in the next program and immediately realized how blessed I was. The other patients in my section of the hospital were suffering from much worse circumstances. I requested to be released after less than a week because I had made enough progress to complete my recovery at home. It was abundantly clear that patients with more serious illnesses needed that bed more than I did. Once home my recovery was slow but steady. Food nauseated me and I ate a steady diet of mashed potatoes and Sierra Mist for at least two months. I had lost over sixty pounds since my transplant but I was far too weak to shop for clothing that fit plus I was restricted from being in public places. I had home health care physical therapy and continued to made steady progress. I did have to resume chemotherapy in order to eradicate the remainder of the cancer in my body but have not had a treatment since January of 2019.
So, here I am! Alive eleven years after my diagnosis with a cancer that typically takes one’s life within five years of diagnosis! Do I continue to bear effects from this treatment? Yes. Of course. I have never been able to regain the strength and stamina I possessed prior to the transplants. I now have to admit that I am in the ELDERLY stage of my life and walk with a walker. But what a BLESSING it is to have been allowed to live at all!
Would I recommend a stem cell transplant to others with this disease? Of course! If your doctor believes you are hearty enough to withstand the process I’d say GO FOR IT!
I am now too old to repeat this process if my cancer resurfaced, but I would definitely go through chemo again.
To those considering a transplant I cannot stress enough that I believe my spiritual connections helped me greatly. I had friends, neighbors, former students and their friends and families, and church prayer chains lifting me in prayer every step of the way.

Hi Dorothy! Two more days to go until the big day, huh? I know I’ve mentioned it before…all this hoopla leading up to the transplant itself and then when the moment comes, it’s basically another 20 minute infusion! Very anticlimactic! But what a gift in that little bag of cells…a 2nd chance at life!

There will be two nurses in the room at that point. They will give David some pre-transplant meds and then check and verify that all the numbers on his wrist band and the infusion bag of cells match. They’ll be with him for about an hour or so? At least that’s how it was when I received my cells. Then I promptly dozed off! LOL My husband and daughter had gone back to the hotel and missed the big moment because my cells got delayed with the flight. So the cells arrived later in the evening and my re-birth moment was at 11:30 at night.

If David is lovely with the staff, he’ll be a favorite patient! I’m sure all the patients are treated the same but I always felt like I got spoiled a bit with extra pudding or whatever because I really was an easy patient. 😅 I heard someone in another room being an absolute pill and upsetting the staff multiple times. I vowed that would never be me. A little niceness goes a long way, especially to people who are trying to save our lives.

It’s not unusual to have different PAs/NPs daily on the floor. They do rotate so you may see them again. And the oncologists take their weekend rotations as well. So you may or may not see Davids Transplant doctor pop in. But believe me, whomever you have, they are all aware of the complexity of his condition. And quite frankly they’ve seen it all up on that floor! I’ve never met a more competent or completely trustworthy medical staff than at Mayo. Not kidding, I never lost one moment of sleep there worrying about anything. I knew these people had my back. I’m happy to hear nothing has changed and they’re still attentive and take time to answer questions.

I’ll for sure be thinking of you and David! I’m here anytime if you need a shoulder or an ear. Hugs!

Lori the first three days were half hour infusions so I just stayed with him. He lets me help with his NY Times puzzles.
Yesterday was longer about four hours so I went out briefly to walk and get warm (the AC gets to me after sitting still for awhile). I don’t like to leave it makes me uneasy. Although the team is great. We have had two primary nurses but a different “practitioner” (PA or NP) every day. All seem very intelligent and competent and friendly. David is lovely with all the staff. I get a bit anxious because his condition is so complex how can they be aware of all the things? So I ask a lot of questions. The responses have all been helpful.
Transplant day Thursday. Keep us in the light.

Caregiverx2
I like to look at these funky experiences, as something to take my mind off other things. I am sure the RN has had worse in her time, but the fun seemed to be spread. Hopefully you both did not have lots to move. The view will be missed i am sure. I only saw mine when i looked sideways into a cubby that had an odd size chair for the space. I was hooked to my rolling sister with the tubes. Mostly on my bed so i got views when i get out and walked like they wanted. At Day -4, you are one day closer to 0. I hope you both get some sleep.........
Our hematology at COH is moving too. I guess both hospital staffs have something to look forward to

He is on day -4 and doing well. The only issues so far have been plumbing issues which caused us to have to change rooms and leave our room with the great view of the lake. The toilet was backed up the first day. Maintenance came and declared it resolved. Ditto for the morning of day two. Evening of day two water started gushing everywhere when flushed. Maintenace called for the third time. Then on Sunday, the nurse got sprayed after she dumped a urinal in the toilet and flushed it. She was coming out of the bathroom. It soaked her from head to toe. I was standing in front of her at the foot of the bed and I got splashed as well. She headed for the showers, and we moved to a new room. I hope they get it fixed for the next person. At least it made the time interesting. I know the hematology oncology unit will be glad when construction is complete, and they can move to their new floor.

I love updates. I am using the diatomaceous earth. I bought my 2nd bag. Tomorrow, I vacuum it up and lay out a 2nd batch. Cover with a box or newspaper. My cat is staying away. I checked with my vet and cleaning bedding, stuffed animals, cat toys, couches. All need treating. My cat has the med that works 3 months. Fleas must bite him to die. Today I flea comb him and vacuum.
I attended something that was not heavily crowded and i wore an N95 all day. I wear a mask everywhere.
The fun thing is 1 month home after my 100 days, so 130 days tomorrow after transplant and i have a very soft layer of hair across the top of my scalp. The sides not that long. I had a thought that my donor could have a natural mohawk and now i got that!!!! I guess time will tell. You would think i might remember how fast my hair grew the last time i lost my hair in late 2021. Nope. Almost 3 years later, i am not bogged down with continuing chemo, so i can feel how i feel.
Once you walk through the conditioning day and get to the magic Day O, Lori will remind you that a new road of life will begin. Air hugs to all.

Trust me, he’s not going to feel like working in the yard for a couple months! Fatigue will most likely be his buddy for the near future. That’s not a bad thing…it’s nature’s way of telling him to slow down and recover slowly. A bone marrow transplant journey is a marathon, not a sprint. ☺️ However, I also know that it’s frustrating as heck if he’s a very active person and now has to be sidelined for a while. I learned the hard way that we SCT patients have really great days where we over do, and then pay for that thrill the next 3 days. So, again, slow and steady wins this race.

Also, he’ll be very susceptible to infections so exposure to molds and fungus in soil will be important for him to avoid for a while…no gardening, no pulling weeds or raking until he’s off the immunosuppressants and his doctor clears him for that type of work. I’m 5 years post transplant and still wear a mask when I’m working in the soil or raking leaves. It’s that important…lung infections can happen easily!
When I was able to return home after my 100 days, my doctor even advised wearing a mask in the car (this was pre-covid) in case there were any mold or fungal spores in the A/C vents.

It’s pretty cool that your husband and @avaleir are in the clinic at the same time for transplants. Wonder if you’ll ‘bump’ into each other at some point! Give your husband an air-hug or maybe a high five from me. 🤗

@dwolden
My husband's first day of conditioning chemo was yesterday (8/16) as well. Things seem to be back on track with the team. We are just taking things one day at a time now. I feel fortunate that we are close enough to home that I can run back and forth as necessary. It is probably a good thing that they won't let him come home immediately after the transplant. I think the temptation of doing things around the yard would be too much for him to resist.

Now that your husband’s in Station 94, he’s in the most excellent hands! His care team there will be consistent though, you may see some different on floor doctors daily. However, they are all briefed each day as a team so they are fully aware of each patient on that floor. Hopefully all your pre-transplant jitters and scheduling ‘mis-haps’ or whatever they were are all in the past and it’s smooth sailing from here on out!

I smiled with your line “ we’ve been through a lot in life but this takes the cake.”. Ain’t that the truth!! My husband and I too…we’d been married 45 years at the time I received my transplant after the previous months of chemo. Wow, talk about a life adventure. Now we feel like we can manage anything after that!

I’ll be thinking of you both as you go through this week! The first couple of days most likely won’t change much for your husband with the pre-transplant chemo. But by day -3 or -2 he may start feeling a little more loagy…fatigued and feeling ‘off’…that’s the best way I could describe it.

Anyway, we all react differently. So as long has he’s feeling like eating and drinking, have him work on keeping up his nutrition. I think the kitchen closes at 6PM so it’s ok to order extra foods. I had meds to take in the middle of the night so I’d frequently order extra banana bread so that I had something to nibble on at midnight. Also, my husband would bring lunch or dinner that he made for me. There’s a refrigerator in the Family room off 9-4 where people can put foods if they need to. We didn’t really keep anything there because we lived less than 2 blocks from the clinic so Rick would just bring a lunch bag for me.
There’s also the snack room for transplant patients. You can make toast, there are premade sandwiches, protein powders, pudding, popsicles, etc., available 24/7.

Dorothy, are you spending most of your day in the hospital or getting out and walking around…keeping busy?