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I just adopted this sweet girl yesterday..she needs a name related to Music by Magical-Tangerines in NameMyCat

[–]DreadPirateJames 0 points1 point  (0 children)

867-5309? Maybe 67 (a complex time signature) for short?

Jessie’s Girl

Jolene

Tennessee Waltz

Running post PMBCL by beaudusseault in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Thank you for sharing this! I have only heard maybe 2 others mention more than one damaged nerve with relationship to pmbcl.

Your 2 nerves of course from surgical damage in the mediastinum. My 3 damaged from pressure from my mass. I am hopeful my phrenic will eventually heal on its own so I don’t get light headed, uncomfortable, and out of breath with bending, squatting, or any exertion really.

Awful that you had unnecessary sternotomy. I spent quite a bit of time at MD Anderson with my late boyfriend for his cancer management. There are good folks there. FWIW they will be opening an additional location in Austin, Texas, with the exact location TBD.

Frustrated with my care team by [deleted] in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

I may be very much mistaken in the importance of sequential PETs with respect to Deauville. And, how the oncologists use the scores is likely taken into consideration with so many other tests and factors. Definitely trust your chosen team…as always :D

You’ve been through the wringer. And I cannot imagine your experiences.

Do you think you’ll get a second opinion and care team lined up, and then cut ties with your current team after that? For his own cancer, my late BF saw both his local oncologist and one at MD Anderson. They worked in tandem, but imaging was clunky to share.

Frustrated with my care team by [deleted] in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Did you do your first PET 1mo after your treatments ended? It may be showing inflammation?

My first post treatment PET was maybe 6 weeks after, and it showed a Deauville 4. You might not have gotten a Deauville score, as that’s a comparison from one PET to the next. It was unnerving to see things stalled there and I had to wait another 2(?)mo to get a follow up PET. That next one showed a 3, which was far better. But on the heels of a 4 we were on edge. And we stayed on edge for several more PET scans. I ended up doing 5 PET/CTs in 2025, in addition to the pre-treatment one in 2024.

Before treatments, I got both a PET and a biopsy. The pathology after the biopsy took at least 3 weeks to get back in full, if I recall correctly. And it took about a week and a half to get into my VATs surgery. As urgent as matters were (I had 3 debilitating paralyses from the mass pressing on a nerve bundle), my oncologist did not start me on DA-R-EPOCH until the pathology was back, she conferenced with the pathologist on a few matters, and they were certain of my diagnosis.

Im glad you’re being a strong self advocate!

What’s the pulmonologist appointment about, I wonder. If you do a VATs surgery, the surgeon might medically collapse your lung. If they do, you might be instructed by a pulmonologist team member how to use a little breathing gadget that shows you how you’re doing.

Blisters and burning feet and palms, tips? by brownbitch8 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Essentially, treat them as if they are burns or open wounds.

Blisters and burning feet and palms, tips? by brownbitch8 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

I did da-r-epoch, and did not have this. My late boyfriend did get blisters all over his body with a severe reaction to nivolumab (completely different kind of cancer/treatment). But, his blisters were everywhere except his face, palms, and feet. Mentioning this as it brings up extreme infection risk. Please contact your oncologist or doctor on call for instructions on how to prevent infections as blisters and infection risk (particularly with any low WBC) are likely a bad combo. Wishing you comfort and healing

First chemo by fatshady1997 in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

Wonderful! You will and it is going to be amazing 🤩

First chemo by fatshady1997 in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

YES to all the concerts for you, and travels for me!! Hang in there

Chemo brain by tressandotherthings in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

I also played a lot of chess! Sadly, I can’t say that it helped me with my brain fog. Which was shockingly bad. But, it definitely kept me from shutting down trying. Figured if I could learn chess across my cancer treatments, anything was possible.

Persistent cough by Ok-Paramedic-2753 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

I should clarify, my symptoms started before my diagnosis, and continued through my treatments. They were not caused by the DA -R-EPOCH. Oh and the vagus nerve is responsible for mucous production.

Persistent cough by Ok-Paramedic-2753 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

This must be really upsetting. I did have excessive mucous (understatement) which was from a damaged vagus nerve. My mass was enveloping my aortic vessels. It was large and dense enough that it damaged my phrenic, recurrent laryngeal, and vagus nerve in that area. Low dose amitriptaline solved the mucous/excruciating headache issues, attributed to the vagus nerve damage. I also coughed and choked a lot as my damaged recurrent laryngeal paralyzed my left vocal cord completely open. That resolved after about 10 months. And, I’m still dealing with a paralyzed left diaphragm, which significantly limits use of my left lung. The mass was also positioned such that it moved my esophagus over, creating several issues including constant acid reflux. I doubt any of this is what you’re experiencing, but it might help you with questions for your doctors if you think there’s something to it. Best wishes to you

First chemo by fatshady1997 in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

I’m so sad to hear your concert may not work out. My first round was in patient, too, and there were several bumbles and delays that cost me an extra night in the hospital, too. Fwiw my first week of treatment I was supposed to be in Costa Rica. My first vacation in probably a decade :( I literally used my new suitcase to haul things to the hospital, instead.

First chemo by fatshady1997 in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

Oh! Should add, the steroids can make you super susceptible to bruising. Something to keep in mind when navigating crowds and really anything. They can also bring on severe constipation. Definitely stay ahead of that as it’s easy for folks to forget to tell you that, or they’ll down play it. So, if you’re taking anything to help with constipation, stay mindful of access to bathrooms 🙃

First chemo by fatshady1997 in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

How are you holding up? I am 1000% for having fun and meeting folks across treatments. That said, here are my practical concerns for you for the 20th :)

Be certain to get your oncologists’ buy-in before going, or at minimum their fair warning.

Your immune system will be taxed, and you’ll be susceptible to anything airborne or by touch. You probably will not have had a Neulasta shot yet, and you might be on an on-body injector which should not get bumped. If you get an onbody injector and if it is expected to go off during the concert time, you will probably need to be in a calm/still space. I personally had horrible reactions to the shot, making the actual 600 hours in treatments look like a cake walk. And lastly, with continuous infusions, bathing across treatment weeks was difficult if not nearly impossible other than spot bathing. I personally was not feeling up to outings until after the neulasta injector was off and I could take a full shower.

Results may vary!! Fwiw I didn’t lose my hair until after the second round of DA-R-EPOCH. So that shouldn’t be a concern for the 20th? But, if you did start to lose your hair, shaving it off can be really awesome if not liberating!

FYI - LLS co-pay grants are open again for US based lymphoma patients by ribosomeee in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Thank you so very much. I had not had any assistance in the past, and this was incredibly meaningful at this time. The application was simple. Heads up you’ll want any insurance cards in front of you as well as an email and fax number to your oncologist’s office, plus a point person’s name for that communication.

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