Recently diagnosed with MCL with TP53 mutation

Posted by mpg51 @mpg51, May 2 7:47am

I was recently diagnosed with Mantle Cell Lymphoma with a TP53 mutation and have had 1st two infusions of Rituximab. I have an enlarged spleen and platelet count of 49,000. Just wondering if others have a similar scenario. I do not have any lymph node involvement and no symptoms other than loss of appetite and discomfort from the spleen. I was prescribed Calquence orally but was told to hold off until my platelet counts came back up.

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Lori, Volunteer Mentor | @loribmt | May 5 9:49am

Hi @mpg51 I did a search in Connect to find other members for you with Mantle Cell Lymphoma. Rituximab and Calquence (sometimes paired with venetoclax) from my understanding are standard treatments for CLL/MCL.

I wasn’t sure which discussion to share with you so I’m providing the link to the search results:
https://connect.mayoclinic.org/search/
I can empathize with you about the spleen discomfort and loss of appetite. When I was going through my leukemia ‘drama’ the sense of fullness, loss of appetite and sometimes interference with deep breathing was so frustrating. Eventually the spleen should shrink as treatments continue. Keeping hydrated can really help flush the organs. I mentioned to someone else that I found drinking room temperature water allowed me to drink more water to get my daily intake.
Did you have the typical reaction to the first round of Rituximab?

mpg51 | @mpg51 | May 9 6:50am

In reply to @loribmt "Hi @mpg51 I did a search in Connect to find other members for you with Mantle..." + (show)

@loribmt
Thank you so much for taking the time to do this for me. I’m sorry I didn’t reply sooner but it hasn’t been a good week. I didn’t have any problem with the 1st infusion as they administered it slowly but they’ve tried to speed it up the last 2 times and it didn’t go well. Thanks again.

Lori, Volunteer Mentor | @loribmt | May 9 7:57am

In reply to @mpg51 "@loribmt Thank you so much for taking the time to do this for me. I’m sorry..." + (show)

Good morning, @mpg51 I’m sorry you had a less than stellar week…just as long as the good days outnumber the ‘blargh’ days. If it’s any consolation, my Rituximab infusions all had to be at a slower drip too. Speeding up just didn’t set well. So I just planned for a day at the infusion center! Took my iPad (charger and extension cord), some little hand-project, a lunch, etc. And there was never a shortage people to chat with. What a weird set of circumstances bringing strangers together, huh?
I hope this is a better week ahead for you! ☺️ Hugs.

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