Peripheral T-Cell Lymphoma NOS

Posted by capthondo @capthondo, Apr 21, 2022

Recently diagnosed with PTCL-NOS.
Wanted to reach out to any others with same. Undergoing CHOP THERAPY with Etoposide.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Lori, Volunteer Mentor | @loribmt | Apr 29, 2022

In reply to @capthondo "Loribmt Had my blood work and PET scan yesterday and met with Dr Khurana to go..." + (show)

Randy!!! I’m doing a happy dance for you!! 💃 I can so relate to that feeling of exuberance and relief with test results giving super good news and prayers have been answered! Thank you for sharing this news! It will definitely help encourage others. Your news is another affirmation of hope. 🙏☺️

Blargh, those pesky mouth sores. They magically disappear as your white count rises. In the meantime there are some mouth rinses you can try. Simple at home, ½ teaspoon salt and 2 tablespoons of sodium bicarbonate dissolved in 4 cups of water.
An OTC product called Peroxyl is helpful and I personally used a mouth rinse, Spry by Xclear. It’s very soothing, contains xylitol which helps promote healing and my transplant pharmacist approved it.

I found a good website which helps explain mucositis, the lovely side effect of chemo. https://oralcancerfoundation.org/complications/mucositis/

And now, phase two of Randy 2.0 Next stop, Rochester! My home away from home. In fact, I’ll be there this weekend through Tuesday. Is there anything I can help you with for this next leg of your journey?

capthondo | @capthondo | Apr 29, 2022

Thanks for your kind and encouraging words! Also I’m using alcohol free Peroxyl now but will look into the other products.
I seem to be good for now but will stay in touch with you.

God bless you and wishing you a great checkup next week!!
Randy

capthondo | @capthondo | May 16, 2022

In reply to @capthondo "Thanks for your kind and encouraging words! Also I’m using alcohol free Peroxyl now but will..." + (show)

How was your check up??🙏

Lori, Volunteer Mentor | @loribmt | May 16, 2022

In reply to @capthondo "How was your check up??🙏" + (show)

Hi Randy! I had a great checkup. Thank you for asking. ☺️
In fact, my leash has been lengthened again and will only need to report back to Mayo for checkups every 6 months instead of 3. So yay! My doctor is very encouraged (me too) that my AML will not return! The end of June will be my 3rd Re-birthday. ☺️

How are you doing?? You must be getting close to your final round of chemo. How are the mouth sores? I know they’re so miserable but I promise they do go away. It is possible they’ll return during the first couple of weeks after your transplant but the Mayo Transplant teams ‘got cha covered’! When your blood numbers very low…RBC/WBC and platelets, you’re susceptible to infections and mouth sores. But as soon as your numbers start to climb again after the new stem cells engraft, then things turn positive quickly. ☺️

Are you all set for your stay in Rochester? Do you have any questions about lodging or the transplant?

capthondo | @capthondo | May 17, 2022

In reply to @loribmt "Hi Randy! I had a great checkup. Thank you for asking. ☺️ In fact, my leash..." + (show)

I’m so happy for you!!! That is excellent news. I have 2 more treatments then tentatively scheduled to return to Mayo the third week of July to begin the stem cell transplant process. The mouth sores did go away!!! But they’re just pesky things to deal with in the whole scheme of things.
My biggest side effect is just fatigue but I’ve managed that well.
We have a house and car rented for the duration of our stay in Rochester so we’re all set!
Let the journey continue. 🙏❤️🙏👍

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