Peripheral T-Cell Lymphoma NOS

Anyone else out there that has been diagnosed with same? Would love to talk. Have had 3 of 6 treatments so far. Going back to Mayo next week for a midpoint checkup to see how the therapy is progressing. Will meet with a stem cell transplant doctor at the same time. Anyone been through a stem cell transplant procedure?

Hi @capthondo Welcome to Mayo Connect. I’m a stem cell transplant patient just coming up on my 3rd birthday. Though I did not have your T-cell lymphoma, I did have Acute Myeloid Leukemia. Different side of the blood composition.
I had all of my excitement at Mayo Rochester, is this where you’ll be having your transplant?
Do you know if you’ll be using your own cells or do you need an unrelated donor?

Thanks for the reply. Yes, I will be having my transplant in Rochester. I’m at the halfway point of my chemo treatments so I will be at the clinic next week for tests and to consult with my transplant doctor. I’m told I will be using my own stem cells. How long was your transplant process? I’m sure I’ll have many questions answered next week but was curious as to your experience.
Thanks!

Great, from first hand experience I can tell you that you’ll be in excellent hands with the transplant teams in Rochester. They’ve been my lifeline for the past 3 years.

As I mentioned, the leukemia I had required the need for an unrelated donor as my cells couldn’t be used. That being the case, my transplant process was a bit more involved and the recovery much longer. The advantage of using your own cells (autologous transplant) will be a greatly reduced amount of pre-transplant conditioning chemo, with your stay in Rochester around a month instead of 100 + days.

One of our members, (@countrygirlusa, just had her transplant this week, using her own cells. She’s doing really well and hopefully she’s online and can give you some feedback of her transplant which is very similar to what yours will be.

To give you a brief idea, and this will be explained to you when you meet with your transplant doctor next week, you’ll be needing to stay in Rochester for about a month. I think you’re already familiar with Rochester because of prior appointments.
My suggestion is to find a hotel close to the clinic as you’ll need to be going there daily pre and post transplant for lots of pre transplant appointments, blood tests and follow up appointments. My husband and I ended up at the Marriott Residence Inn on Center street. It’s connected via the subway to the Clinic and so convenient!
If you stay for a month or more, I’d suggest you sign a month lease because you can avoid paying county room tax, which cuts out quite a chunk of the lodging cost. Most insurances will also give a housing allowance for transplants so you might look into that.

The process for you will be having tests prior to the transplant to make sure your body is physically able to cope with the transplant such as monitoring your heart, X-rays, scans. There will be educational classes on diet and life changes. You’ll see about 25 appointments popping up on your Mayo portal when the time comes. Don’t panic! These all go very smoothly and the schedule looks more daunting that it is. I looked at my schedule with eyes wide and said, “Don’t they know I’m a 65 year old woman with cancer???! My husband and I joked about being Mayo-naised! It was like being in a blender of medical smoothie! 😅 I swear it’s something only Mayo can pull off!
After that, you’ll be given some meds which will encourage your marrow to produce more cells so that you can start harvesting in prep for the transplant. Harvesting is very similar to donating blood, except the cells are extracted and your blood is circulated right back into you.
When that’s complete, within a few days you’ll undergo the conditioning chemo and then given the infusion of your cells. You’ll be in the hospital in Station 94 of the Methodist hospital. (Not St Mary’s). You’ll be in familiar territory on the main campus. ☺️
Your recovery will be at your hotel or apartment. You will be seriously immunocompromised so you’ll want to keep that in mind when lodging. We opted for a 2 bed, 2 bath suite with a full kitchen. It was home for 4 months and having the 2 separate bathrooms and bedrooms was worth it.

Do you know who your transplant doctor will be?

I’m 68 and have Medicare along with a no co-pay, no deductible supplement. Wonder how much of the lodging cost they will cover. I’ve never had much luck with getting answers from Medicare.
I’ve added my transplant doctor to this reply.

I’m a Marriott Bonvoy member so I’ll check their rates.
Thanks!!

When I went through my transplant, Medicare would have paid $10,000 for my 100 day stay, however because I was out of state that didn’t apply. Check with your supplemental insurance company to see if that has changed. My husband said the costs for hotel, which we paid out of pocket, was deductible on taxes. So you get something.

We have Marriott Bonvoy too and that lengthy stay really pays off with points and free suite nights! We’re still cashing in on those when we travel.
Are you in Minnesota?

No I live on the coast of North Carolina. Even though we have some fine medical facilities like Duke and UNC, I chose to be treated by the specialists at Mayo. My experience to date has been awesome! I do receive my chemo in NC but I’m followed by the doctors at Mayo. Wouldn’t go anywhere else!

I sent Countrygirl a private message. Hope she replies.

The feeling is the same! I had several options in front of me for the transplant, but insisted on Mayo. I have absolutely no regrets. My family and I felt so confident in our choice and we were not disappointed. Mayo is truly a place of hope.

I’ll actually be in Rochester May 1-3 for my check up. It’s like returning home to my extended family. ☺️
Will you let me know how your visit turns out?

I absolutely will let you know and I hope your checkup is a good one!! I too feel a closeness to the doctors, nurses, and staff at Mayo!❤️

Loribmt
Had my blood work and PET scan yesterday and met with Dr Khurana to go over the results.

After 3 cycles of CHOEP chemo treatment therapy the PET scan showed no signs of cancer in the lymph nodes as it did on the first scan 10 weeks ago!!!🙏❤️

This was the news we were hoping for and I’m on target for a stem cell transplant in mid-July after my remaining 3 rounds of chemo.

It hasn’t been easy and I’ve recently developed painful mouth sores but I’m coping.

I hope my results give hope to others suffering from this terrible disease. 🙏❤️🙏
Randy