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

Lori,

Thank you. I bought 2 pairs of slippers and a 5th outfit to wear. I asked the nurse today and she said about a weeks' worth of clothing. She said they only pick up what they issue, so that was good to know. My older sister says my slippers look comfy. Straight from Kohls. Nothing at DSW or Nordstrom Rack. I guess in summer no one wears slippers.
My younger sister genetics team at Roswell asked for my genetic work up from my 1st bone marrow transplant. I did note that the TP53 mutation was noted in 2022. But back then, I did not have a bone marrow biopsy.

I will keep you posted and share my journey as it progresses. City of Hope does not have these boards. I am grateful Mayo does.

Hi @katgob. Thinking of you! Tomorrow’s the day you get your Picc line and your journey begins. I’ll be ‘sitting right next to you’…anytime time you need someone to talk to I’m on the other side of this computer. Sending love, a positive vibes and a huge virtual hug.

You’re getting your ‘ducks in a row’…☺️.
The list: Sounds like you’re set with your laptop, phone, etc., with chargers and extension cord.

For the hospital and, just in general, my slippers were Keen Howser Slippers. They had firm souls and easy to slide into but gave support for my walking in the hospital. They looked cute with jeans or my jammies.

Another great thing that I loved are the cushy socks with the rubber dots on the bottom. I wore those in bed to keep my feet warm but if I needed to get up for something I didn’t worry about slipping on the floor before I could get my shoes on.

Any time I stayed in the hosptial I still got dressed daily and seldom stayed in my PJs. I think it helps psychologically to be dressed and not feeling like an invalid. I didn’t wear jeans but had some nice yoga pants and cute loose tops to accommodate my port. Though you are having one in your arm so you don’t have to worry about the neckline being loose enough.

Tooth brush and floss are discouraged once you start chemo. You will be very susceptible to infection so no brushing or flossing as that can introduce bacteria into your blood stream. You’ll most likely be given or instructed to purchase, spongy brushes. I had a difficult time with those so I used pieces of tissue or sterile gauze 2x2’s to ‘rub’ my teeth and gums. You may also be given a specific medicated mouth rinse to use a couple of times per day.

Make up: I wore none, having lost my eyelashes and most of my eyebrows with my previous cancer treatments. Makeup was the last thing on my mind. But I do remember it was discouraged because of the possibility of mascara wands harboring bacteria. Not sure about eye pencils. You can ask your team what they think.
Like you, I did have some cute caps because my head would get cold.

Your lips may be dry so lip moisturizers are a must.
My skin was very dry too. Beyond what a lotion could help so I ended up with Bert’s Bee Baby Balm. Cocoanut oil also helped.

You’ll have a lot of little details that pop up. Another little thing is if you wear prescription glasses, you could take a spare pair along.
Not sure how laundry is handled for you. Since I was an outpatient, my husband did all my laundry…jammies, t-shirts, skivvies. The only thing the hospital laundered was hosptial attire. If I was in the clinic for an extended stay he still took my clothing back to the hotel to wash.

I’m glad your family is getting behind you now! That’s a good boost for you!!

Lori,
Thank you for posting. I have one question about the items to bring to the hospital. I have a work laptop and mine, a tablet and a phone. An extension cord and the cords for all items.
Why no tooth brush or floss? Is this because of germs?
I have many hats from headcover.com from my breast cancer loss and about 3 new ones I never wore!!! I am going to bring one of my wigs.
Can we wear eye pencil or lip gloss?
Mine says eye cover and ear plugs. I snore so fun for nurses.
I bought some lounge wear and will get a few more. The shoes are really bugging me. I have big feet, a 9WW and shoes are a funny thing for me.
I am buying a new cozy bathrobe and some slippers. But what other shoes?

Today I received three forms to fill out. One from MD Anderson on how I feel and the other two nearly the same. Interesting. For the most part I am not walking into this with fear. I have people who love and care about me, my sisters who i believe are worried for me. I never thought my body would accept implants, but 15 months in, all is good. I have had blood and platelet transfusions during my cancer in late 2021.
I think taking part in that study will be good. Others have taken the drug across the country. I believe it has showed promise, so I said yes. Most of the drugs I have taken in my treatments and chemo were for stage 3 or metastatic diseases. My cancer diagnosis was one 2% of people have, so i got what a team of drs felt would be right. After my pancytopenia in November of 2021, The round table of drs felt Lynparza would be a good next choice. After 13 rounds of chemo that was it.
So April 2nd I start my 1st round of chemo.
They still have not called my caregiver. I feel like insurance papers needed the info. Not sure. I am confident that each day I will note how i feel. I see the Dr on the 2nd. I will ask him if my labs every day what are they do,
Lori,
I am going to check on the mail as you mentioned. My brother is coming by to feed my cats once i go in the hospital until my sister is home the 14th. She plans to go to my house. She is unable to be a caregiver, but she will clean my house so it is safe to go home.

Good morning @katgob, These last weeks before a stem cell transplant go very quickly. And the transplant process itself starts 7 days ahead of the actual infusion of stem cells.
You had the pre-testing which is routinely done at least a week or so ahead. So you’ve passed all those tests and are now cleared for the process to begin.

I think you’re caught off guard a little by timing if I’m understanding correctly. I know your transplant day is April 9. In transplant-land, that’s considered Day Zero.

But the process will start one week ahead with the installation of your line and the start of the preconditioning chemo; April 2nd for you. Then you count down daily from Day 7. Depending on your schedule, each day may have chemo or another treatment. When you get to Day 1 that is generally a day of rest between chemo and transplant. From my experience I was in the hospital with IV bags of fluid being flushed through to remove toxins that day…no chemo.

After that, on Day Zero, you get the infusion of Stem Cells from your donor. It’s all anti-climactic really, considering the hype involved leading up to it. It’s just like any other infusion dripped in from an IV bag.

I’m so sorry about the loss of your hair…again. I lost mine 2 times ahead of the transplant with all the months of chemo for AML. I had my long hair buzz cut the day before I started my chemo. I took charge and felt pretty empowered. My daughter was there when the woman from the wig shop in the hospital came up to my room to do the deed! It grew back in spurts after each chemo cycle. Then, about 10 days following the preconditioning chemo for the transplant I lost my cute little 3/4 of an inch long sprouts that had popped up. But it all grew back! I actually didn’t mind being bald. It was the easiest hair style I ever had. ☺️. But I also didn’t have to return to work so I can understand wanting to have a wig to feel like your current hair.

I know there’s a ton of details to get squared away before you head to the COH. Are you all set with what to bring along for you lengthy stay? Do you have friends to water house plants and check your house? Will you hold your mail or will someone pick it up for you?

I figured to add here. It is March 26th and my date to start my conditioning is coming. I am surprised at the flurry to get me in to test and then this week, I message the team and they said they are scheduling the infusions. Are they doing this so routinely that checking in is not deemed necessary? Really? April 2nd, I have labs. docs visit and my pic line put in.
I have told more people and by taking the advice of my supervisor, I walked to our AD building to request a meeting with our HR person. Diversity, Equity and Inclusion. I needed to talk with her about my time off. I spent nearly an hour talking about life. I learned a bunch about her. I told a lot about me, nothing secret but matter of fact about my treatment and my family and genetics. All of this could be found in my medical records.
I work for 3 more days and then I am done till i get home time. Work from home.
For COH as I said above, do they do these infusions so often they do not think checking in is necessary? So right now, I am playing with my hair. The ringlets and all that i have, as I will likely get it all cut off the end of next week. It was just hitting my shoulders; two years it took to grow back from my last rounds of chemo. I told the "Positive image" center at COH to find a wig like my current hair please and when they cut my hair, put it in a bag. It has come back my same color, curl like when I was young and very soft. I am praying to God to let me have my hair back. As it is......

You’ve done a great service over your lifetime for the Red Cross and hundreds of people who benefited from your contributions! That’s amazing! It’s ok to take care of yourself now and look for other ways to pay it forward. ☺️

I think you’re feeling the same way I do, by participating in studies it ultimately helps people way beyond our personal orbit! So thank you for doing that! You may be asked to do more as time goes on. I was in a psychological study as well as studies for latent viruses and a couple others that I can’t recall. But it felt good to be part of those statistics.

Lori,
Thank you for the info. I read a little on the study, but as I am reading I am thinking this is another way to help myself and others in the future. You have written the simple fact it will be helpful. I never read volumes on my original chemos for cancer. I did not have many of the side effects. I will take this a day at a time again. A procedure pill or the effects of.
I know at the Red Cross if you have Hodgkins lymphoma, chronic or leukemia you can never donate again. I was looking at my app yesterday as a way to see what I had donated already. 634 platelet donations. I looked at my platelet numbers of 333, by blood pressure and number of visits.
I realized without the choice, I changed my Red Cross family to a COH family. What I thought would get me back to the RC after breast cancer, actually shot me off in another direction. And all of it is about blood. Blood donation in college, and platelets for the last 25 years.
I will sign the forms and email back today. Thank you for responding today.

Good morning, @katgob, it’s great you’re participating in a study. I was in several myself. It’s our way of being able to assist in the forward growth of cancer treatments.

Graft vs Host Disease or GVHD is a side effect of a bone marrow transplant. To help you understand what that is a little clearer, when a person has a solid organ transplant, they will be on immunosuppressants (anti-rejection drugs) for the rest of their life so that their immune system doesn’t reject the organ.
When we a bone marrow transplant, we’re getting someone else’s immune system (the graft) and it wants to reject our body (the host). It looks as our body as an invading organism and wants to do what any healthy immune system does…take out the offender! Eventually, we are able to get off immunosuppressants as our new immune system learns to recognize the foreign proteins in our body. But in the meantime, it can create some issues and the new graft needs to be suppressed or held back from being hyper active for a while.
That’s where the Itacitinib comes into play. It is an immunosuppressant used for mild GVHD. This will be a really good trial for you to be involved in.

I strongly suggest not reading too much information about the drugs you’ll be taking. I know knowledge is power but in this case, reading about these meds can put fear in you that isn’t warranted.

As for donating blood in the future. That you’ll have to check with your doctor. My transplant doctor told me that is off the table for me. I cannot donate blood or blood products.

Hi @marylou329, I just posted a reply to you! We just overlapped! So here’s the link to what I wrote in another discussion. You’re in the perfect discussion right now so stay with us, ok?!
https://connect.mayoclinic.org/comment/1001138/