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

Yes, I originally had the knee high. The original dr never said different. When i still had a swollen ankle after 6 months on Eliquis and another thinner, I asked for a referral to the vein specialist. It was there I was told surgery was not needed for my DVT but I needed to wear a thigh high stocking as the DVT is on the back of my right thigh. I was also sent to be fitted for the right size.

I will try putting my leg up daily. I sit for my workday, walk a lot, but do not raise my legs as you suggested. I have found that without seeing certain drs, this issue never was taken about in the hematology department. It is about blood in hematology, so i added in the portal after my visit about this DVT.

And yes......
So yes, there are those little reminders from time to time that let us know we’re not 100 percent our former selves…life as a chimera, eh? 😅

My CMV results have not been posted. Looks like that department had a couple days off!!

meg1685
City of Hope nurses got me a huge glass of ice cubes and a cup of popsicles and told me during the chemo to keep my mouth frozen. Keep it full of something cold and it will stop that chemo from taking hold in my mouth. I never had cold sores. Not a one.

Ah ha. My second CMV is 336. I got the message a new test result was in and i went right in to see the result. As i was typing a note in the portal, my NP Hannah called. She just got it and knew i would have a question. I am going back in Jan 31st, so if i hit the magic number of 500, my body may get the other pill. My donor fellows' cells are slow moving in there. Does he like shingles, chicken pox and herpes? Geez guy!! There just could be people in my neighborhood stores with any one of these illnesses as any time. Being honest, I have not worn the mask 100%. This is my reminder.

Well, your CMV is a sneaky little dickens, just creeping up slowly. It will interesting with the next result to see if the numbers are up or down. Fingers crossed for a decline ☺️.
If you need another med, they aren’t generally long term.

It is a nudge to be more vigilant with the masking if you’re out in public though. Especially if you’ve not been feeling quite as energetic and healthy. A few months ago you started the post-BMT immunization protocol. Vaccinations can tax the immune system while it’s working to recognize and defend against the real thing! Even though you have a new immune system, it will never be as robust as the original factory installed model. So hang in there, Kat!
This is a time for no-guilt vegging during the day.

Truth be told I don’t mask 100% either. But if I’m out in stores, elevators, or close proximity such as a meeting, I do wear my mask just in case. I heard that measles, whooping cough and mumps are on the rise, besides the obvious covid, flu, noro virus and RSV. You’ve not been vaccinated yet with the MMR (measles, mumps and rubella) so you definitely want to avoid those. Ugh I got stuck in the elevator with a family that scooted in just as the door was closing. Little germ bombs!! I was so thankful I had my mask on because they were all coughing! I must have looked like a deer in the headlights as I shrank back into my corner. 😂

That is funny about the elevator. I know vacationers are in Florida and all over the East coast too. I am glad Covid brought in masks, and in California, the Asian community has always worn them, so it is not big deal here. I would hope a pack of coughers would shy away and stick together. It is surprising how many go out sick and coughing including parents and kids with no masks.

I have had vaccinations every visit as you said for months, and on the 17th i had the 2nd of the kid ones. I have one scheduled for the 31st. I started making a chart for my vaccines that i realize i did not update after I stopped asking for the papers with each vaccine's info. It is time to update.
This last vaccine my arm hurt for 6 days. Painful to touch. I hope that is a reason for the CMV rise. My new system is trying to keep out any and all invaders. Overall, I feel good and if sleep comes at 9pm it is because I am up between 4-5am to get my day started. I thank my 26yr old for this for sure.

Good morning Lori,
Since you were a patient at Mayo Clinic, Rochester, I'm assuming you went through the chemo right before transplant. I have 6 days of what I think they called conditioning chemo, leading up to my BMT a couple days after. . Is that in patient or out patient? Also, you've spoken highly about the post transplant team. Are they available 24/7? For example, what would a person do if some kind of complication arose in the middle of the night or on the weekend?? I'm assuming and praying that person would not have to go sit in the ER!?
Thank you,
Sally

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?

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 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! ☺️

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