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

Kat, your updates always bring a smile to my face and joy to my heart for your continued success. You are a BMT team’s dream patient with your willingness to adhere to their guidance, suggestions, and expectations. ☺️ Isn’t it amazing how your team becomes such a huge part of your family? There is a bond that develops when you work that closely with someone who has saved your life.

We’ve been hanging out together for over a year! And I’m always blown away with your positive, ‘can-do’ spirit of making things happen. This was not an easy journey for you with the early logistics of getting the necessities lined up for the transplant. But you knew it had to be done and you made it work! Now you’re instrumental in helping newbies navigate along their own path through a SCT. 😍

I’m so happy for you that you’re coming up on your first Re-birthday! It will be a time for ‘cell’-ebration. Giggle.

Here we go. Day 298. My next Bone Marrow Biopsy will be schedule on my next visit February 14th. 365 days. I love the way it gets done right on time!!!!! I will make sure to ask for my favorite PA for the procedure. I was asked if i was ok coming thereon Valentines Day!! Sure. It means i am taking a valentines treat for all!! The new "Hope Plaza" is opening at City of Hope. Our bottom Floor women's center will be there, Hematology, the Pharmacy, VAD, blood draw, scan machines and so much more.

My PA is thrilled with all my numbers. My CMV result does not come till Monday or Tuesday, but she said no worries. Another pill is used. My liver number went to normal after starting the Ursodiol again. All other blood numbers very good. It was 2 weeks since my last blood test. Creatinine was .76. Whew. Plenty of water as i try for 80 plus oz. a day. This is what they love seeing. I look at my blood numbers and go right to the big C #. If it remains over 100, I have to drink the orange Mepron. YUCK!!!! I am drinking water. I do not ever want to drink that stuff again.
I did tell her there was one problem. Hannah said I look GREAT!!!
Quantitative immunoglobulins. - Love these medical names. This number was just about at the lowest desired. This number was the highest I have had. That is why she was not bugged by my lower neutrophils. She asked if I felt run down or had sniffles or anything. That is a cause for those to come down.

There is a "Library" with every disease the hospital treats. Spanish and English. That is the room the Notary meets you if you need one. It has been the VAD waiting room and more. I went through it and asked the young lady if she gets to more to the new building. No, she does not, and she says she does feel disappointed as all the people walk by with the boxes for their new offices. I told her I will stroll through as i walk from the new building through hers to my favorite cafe. I hope others do too. The floor that had way too much along with the emergency also called the ECT may be taking up much of that floor in the future. The care at City of Hope gets better all the time.
Catching up to the Mayo Clinic. The west coast best in the west.

Sally, my hair growth was interesting. During the 3 months of chemo for AML, after shaving my head preemptively before the first go-around, I’d see a feel fuzz growing back during the month, just in time for the next round of chemo. It was a little different after the chemo for the transplant. The 1/2 inch of stubble I had at the time of bmt, took a leave of absence about a week later. I remember standing over a waste basket rubbing my head to shed! I was laughing because it was so absurd! By that time I was used to the cue ball look and felt pretty bad-a**! So I owned it! LOL

Anyway, it took 3 months post transplant to see any trace returning. But once those little follicles decided it was safe to come out of hiding, they let the locks flow at a good 1/2 inch per month…and never looked back!
Like @katgob says, there are so many cute hats, chemo caps and head coverings. I think I mentioned it before, but definitely wear sun screen this summer and wear hats! Being immuno compromised it’s extremely important to stay covered in intense sun because we can become more prone to skin cancer.

Sally,

Hair is funky. It has taken nearly 10 months for me to have a sold amount of 1 inch hair all over. Both times I lost it i wore my sift beanie caps. Night and day. I did not ever walk around and still do not as my hair grows. With red hair, I had never colored my hair. I have a bit of grey, but mine has color still at 64 as it returns.
You have a great attitude about it!!

Hi there,
My transplant is March 6. So coming up. I didn't think too much of losing my hair but I actually really miss it. Would you say it grows back about half an inch a month per normal. I guess I don't really care about the color as I color every 8 weeks to keep the gray away. Was kind of wondering how fast it grows back?
Thx!
Sally

Sally, I had my transplant with a 10/10 donor in April. My hair had just hit my shoulders from losing all my hair with breast cancer and then MDS. I thought for a 2nd before i said yes to the transplant, would my red hair grow back again grow back? Well, as my zoom friends in Breast cancer.org said, I am looking now like Annie Lennox. My hair is red but more brown and some grey. The 2ndtime i got out my beanies and bought more. Headcovers.com and other places have cute hats.
I had my transplant at City of Hope in CA. All the preconditioning and Day 6 to transplant were like what Lori shared. She walked me through the steps right here. The main procedure is fairly standard in many research hospitals. Up to Day 100 differ. No matter what, comeback here. I am 292 days past transplant. A day at a time.

Thank you so much !!
You've been such a joy to talk with. I know all will be well💜🙏

Hi Sally, quite frankly, this isn’t a walk on the beach by any means but you’ll get through it day by day. Much like if you’ve ever had the flu. You have some crumby days but you muckle through and the next thing you know you’re past the worst of it with slow, but steady improvement.
You get through it by knowing you are receiving a second chance at life! That’s powerful! ☺️

Yep, sorry to say, the hair loss will haunt you just one more time. About 10 days after the chemo. Don’t despair!! It should make a reappearance in a couple of months in all its glory! Just in time for summer and sun hats! I had a texture change for a while but the color is the same and I feel there is more hair than before I went through all the AML treatments.
I’ve heard nice things about the transplant house. It sounds like it will be a nice fit for you and your husband over the course of your stay in Rochester.

Congrats on the 10/10 donor. Having the same blood type doesn’t matter though. What’s important is matching key HLA proteins. My blood type and that of my donor weren’t the same. But we were 10/10 match and I now have his blood type. ☺️ It’s all very fascinating.

You’ll learn a great deal with your visits next week. I know it’s daunting seeing all those appointments in the portal! I remember thinking, don’t they know I’m an old lady with cancer?!! There were something like 25 appointments in 5 days. Pfhew! But again…one at a time and they all went like clockwork. I called it being Mayo-naised! Felt like was in a medical blender. 😅

There’ll be a lot of waiting time for your husband while you’re at appointments. And you may not get back to the transplant house between appts so grab a backpack or little tote bag with snacks, water bottles, tablets, books, chargers…There’s a cafeteria but having snacks to grab at a moment’s notice is really handy.

I’m here anytime, Sally! If you think of anything else don’t hesitate to ask! ☺️

We live in the Twin Cities and will be heading to Mayo next week for all of the appointments. We decided to check out the transplant house and we will be staying there when we are down there for the appointments.
I'm about 99% sure we will be staying there post BMT, as I think it would be very helpful for my husband and for me not to be too isolated. He is very social and it might help to have people to talk to.
As far as specific questions, I was mostly wondering about the pre-chemo before day zero. My doctor said six days of it. They found me a 10/10 donor with the same blood type so for that I give God the glory!! Also, re hair regrowth? It seems so minor, but I really miss having hair. During my hi dac cycles, it has started to grow back. I've heard it falls out again during the chemo before transplant? Please tell me the hair eventually grows back?! Thank you for being so encouraging!💜

Hi @sally66. Ooo gurl, take a deep breath let it out slowly…I’ve got your back. ☺️ Your team will do everything they can to keep you comfortable. You’ll be supplied with anti-nausea meds ahead of time so that you have them on hand should they be needed.

From my experience at Mayo-Rochester, the pre-conditioning chemo was outpatient for the first 4 days. So, day 6, day 5, day 4, day 3 were outpatient chemo infusions.
Day 2, I was admitted for chemo and to stay as inpatient.
Day 1 is a day of rest. No chemo, but IV fluids to flush the body
Day Zero is transplant day.
I remember that the first 3 days I was fine. By day 4
I do recall getting a bit fatigued and was ready to get admitted.
However, I know of people who were admitted on Day 6 at the start of their chemo. I think it depends on what your personal pre-conditioning will be and your doctor’s directions. We don’t all get the same chemo.

The transplant itself is fairly anticlimactic. 2 nurses will be in the room with you for an hour or so. You’ll be given medications to help prevent any unexpected reaction to the infusion of the cells. The bag of cells look very much like a transfusion bag and does hang from the IV cart. The bag is hooked to your port line and it takes about 15 minutes to an hour to infuse the cells. That’s it! Within a day you’re back to outpatient status.

And yes, I know, that thought of being turned loose had me concerned as well. But the worry is unfounded. You’ll be given a number to call for the transplant floor… Station 94. Or 9-4. You can call that number 24/7 and a coordinator answers immediately! We had to use that number a couple of times over the 100 days. The response immediate and direct. You don’t have to go sit in the ER unless it is truly an emergency. In my experience, there were 2 times I needed to return to 94 in the middle of the night and was immediately admitted. They are that responsive.
You’ll also be returning to 9-4 daily for blood work, checks, med checks and infusions. So you’re well attended and supported!

I am still singing the praises of my BMT team at Rochester. I’m almost 6 years post and had an issue over the holidays and 1250 miles from home. It wasn’t directly related to my transplant but I needed immediate guidance. So I called 94 and spoke to a nurse. Together with the provider on call, I got the help I needed and meds were called into pharmacy where I was staying. My team and transplant doctor followed up with several contacts over the follow weeks. They really meant it when they told me at the time of transplant “that we’re married for life”.

If you haven’t gone through it already, you have a busy week of pretesting, educational classes and meetings coming up! You’ll also have a port installed to make the process of blood draws and infusions a whole lot easier on you and your body!
Do you have any specific questions for me? Did you find lodging?