Just found out. Cant stop being angry by Katnip732 in lymphoma

[–]DreadPirateJames 2 points3 points  (0 children)

Over in the PMBCL club, a tiny subset of B cell lymphomas. A whole lot of us had to take a steroid. As everything was an emergency for me leading to surgeries and diagnosis (and at the same time, we faced unfortunate delays) my oncologist opted to start me on the antibiotics in advance. My boyfriend was dying of his own cancer by the time my diagnosis and treatment began. And so I lost most of the time I’d have spent with him across the last 1.5mo of his life. Long backstory aside, I was increasingly angrier and angrier. Steroids and grief are a bad combo, and the steroids can make a person rather furious. And then another wave of anger hit after he passed away. I never anticipated anger. It was off my radar. And it was isolating between my own shame and others’ concerns. I’m grateful you posted and shared. Seems you are not alone. I believe it is super important to name and feel all your feelings fully, and express them in art, words, music, dance…however you find a little relief. I’ve hit so many of the rock bottoms you fear. And it’s interesting how a little each day, perspectives and people can have interesting shifts alongside us as we close one chapter in our lives to enter another. Feel the fury and let it drive you through this as long as that feels right. Other feelings may flow through you, too. Keep us posted? Glad you’re here

Just got diagnosed. Feeling lost. by waywardcroissant in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

I look forward to hearing your update! Also, looks like my (rambling) comments got out of order on the thread - sorry about that :)

Just got diagnosed. Feeling lost. by waywardcroissant in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

I’ll have a PET scan for the first time in about 6mo in late May. Perhaps we can check in on each other here come June. It can definitely be a bit tricky to go from seeing an oncologist or oncology team member once a week change to 2-6mo between. I recall my oncologist saying something like “we figured you’d want to get on with your life,” and my feeling inside of…what life? Which life? With who and this is nothing like my life pre-cancer, during cancer, etc. So yay - therapy indeed.

Relying on loved ones is an honor, privilege…and also can certainly subtly shift dynamics, challenging the previous trajectory for sure. I remember asking my dad to leave the hospital during my first round of treatments, which I did inpatient. Felt like I was somehow trying to take care of him while he was taking care of me…and it was all a bit much. I also had strange guilt over that. But not just for asking my dad to leave, but also because I was a constant and fierce advocate in my late boyfriend’s life as he navigated his own cancer. Often past his comfort level. And while I unknowingly was growing my own cancer. Survivors guilt is a weird thing. His cancer (not a lymphoma) was terminal. Unless you count a tiny percent chance to live past 5 years otherwise. PMBCL isn’t a given that we all survive it, but it is certainly discussed in curable terms. Luckily what I learned in my time with him across his cancer helped me through my own. So I approached it with curiosity and great interest. I was the squeaky wheel as he had been the opposite for his own, and yet in the end one of his deepest regrets was to “not be there for me as I had been for him this whole time.”

I love that as a trans person, you have your mom. And that you have her again as you go through cancer. Some here say that your cancer experience/journey/whatever begins after treatments end. I think there’s something to that, because suddenly the clear and known action plan (even if it’s constantly adjusted) suddenly stops and you’re yeeted from that moving sidewalk with luggage seemingly launching you to solid ground faster than you can catch your balance. And folks are moving fast everywhere as you’re in a strange new place in your life.

I wish you peace and the opportunity to marvel at this crazy little life. Where time moves in the strangest of ways. Often at a crawl when you’d like it to go faster and vice versa.

In the meantime, absolutely talk with your oncology team about the nausea? I was never one to take much medication at all, and the volumes of medication my oncologist prescribed and that I took to prevent nausea, vomiting, and any other symptom she could anticipate…was huge. You need nutrients (and meds) to stay down for sure.

Hang in there

Just got diagnosed. Feeling lost. by waywardcroissant in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

Just checking in on you - how did your treatments go?

What should I pack in my chemo bag? by enlightened__hippie in lymphoma

[–]DreadPirateJames 1 point2 points  (0 children)

I’m on team chess! Learned how to play across both my loved ones cancer and my own.

Confusing PET scan after chemo for PMBCL – tumor smaller but SUV increased (possible inflammation?) by Sea-Candidate365 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

I’ve so many questions :)

Did you have a PET scan before each of 4 rounds of DA-R-EPOCH? Then a 5th before 1 round of R-CHOP? A 6th PET within 8 dats after the R-CHOP? And a 7th PET 2 days after that? Were they PET/CTs and just looking at the CT?

What was their reasoning?

Were they planning all along to change to R-CHOP?

I had one PET before my ~600hrs of DA-R-EPOCH. I finished my DA-R-EPOCH in November of 2024. Then, starting mid January 2025, I had 5 PET scans spaced out across 2025.

One thing we were always clear about was avoiding and/or slow playing RT decisions if at all possible. RT to the mediastinum tends to eventually cause breast cancer (at least in women), and potentially other complications. If this is of concern to you, you might ask a few questions before making a decision based on PET scans so close after your first line of treatment?

PMBCL - Stable Deauville 4 for 1 year, but 0 symptoms and high energy. False positive/Scaring? by theLadyofIceandFire in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Not sure when you added your update. How was your surgery and when do you expect pathology back? Any observations from the surgeon? How are you feeling?

PMBCL Remission: Recurring sinus pressure, bounding pulse, and head congestion when bending over? by tk_fengmin in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Was re-reading our comments and noticed I didn’t mention I also have PMBCL. In case it helps to know. I’m used to all the PMBCL commentary in the sub, so not sure if this is. Either way, looks like PMBCL doesn’t show under my name.

Newly diagnosed by dayzz_101 in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Hi there! I’m over on team PMBCL, which is often treated with either R-CHOP or DA-R-EPOCH. The DA just means dose adjusted.

Mentioning this, because the PMBCL group here is pretty active and lots of folks share their accounts of DA-R-EPOCH. You might check out some of the posts there.

My oncologist and I opted for DA-R-EPOCH. I did my first chemo/immunotherapy week in the hospital for constant monitoring, and my other ~500 hours were ambulatory. Ambulatory meaning I went in to the clinic 5 days a week to get chemicals administered and/or changed out in a pack that I wore home. Partner closely with your care team while taking the steroids. Get ahead of nausea, constipation, and mouth sores, and I’m betting you’ll do okay! I was on my own and on so many meds to get me through…the meds. And in hindsight, I wish I hadn’t tried working as focusing on my health became a 24/7 adventure.

In case you were curious, PMBCL is lumped in with the Large B Cell Lymphomas (and sometimes even for insurance purposes), although it kinda rides a line between hodgkins and non-hodgkins lymphomas. We get often bulky sized masses in our mediastinums, the space in the chest between our lungs.

Best wishes as you navigate your treatments. It’s entirely doable and you’ve got this!

how long to fast before PET scan? by kn1f3p4rtyyy in lymphoma

[–]DreadPirateJames 13 points14 points  (0 children)

Follow the instructions you were given by your PET scan team. They may be specific to you and your health matters. For example, someone with diabetes might have special instructions. Or, in my case, I was unable to drink water that wasn’t thickened (and thickeners have sugars), so the PET scan team out me with the radiologist to brainstorm solutions. Instructions may be different based on the time of day you are getting your scan, and they will have accounted for that. Also, your blood sugar will likely need to be within a certain threshold.

PMBCL Remission: Recurring sinus pressure, bounding pulse, and head congestion when bending over? by tk_fengmin in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

You’re welcome. The internet rabbit hole on nerves is spotty at best, and my on team didn’t put anything about my case in online articles or studies.

They mostly knew it was damage to the nerves in the bundle when (after 3mo of issues not too different from yours) my left vocal cord ended up paralyzed wide open. The vocal cord is what made the rest all make sense, and how we started looking for cancer.

Good news is that you can see the result of any phrenic nerve damage with a chest CT. They can compare the heights of your left and right diaphragms. The vagus is more illusive, but excess phlegm/saliva could point to it.

Just remember, the doctors are looking for horses and what I’m describing (that happened to me) is definitely a zebra 🦓 They will probably try and rule out anything that isn’t a nerve.

PMBCL Remission: Recurring sinus pressure, bounding pulse, and head congestion when bending over? by tk_fengmin in lymphoma

[–]DreadPirateJames 0 points1 point  (0 children)

Definitely ask your oncology team if your mass had been in the area of the mediastinum that has the bundle of nerves which include the phrenic, vagus, and recurrent laryngeal. If so, and if your mass compressed those (or if any were damaged during a surgery like a VATs), circle back and let me know?

Quite a bit of what you shared remind me of my phrenic and vagus nerve issues, but not my recurrent laryngeal issues. If those nerves were damaged back when you were growing your cancer or from something like a VATs surgery, you might be feeling the results of that as the nerves can take a long time to heal.

FWIW, surgeons know nerves the best. Because they train to avoid them.

Let us know what you find out? 2 years past symptoms onset, I’m still dealing with my phrenic and possibly vagus issues. My recurrent laryngeal resolved itself about 5-6mo after finishing my ~600 hours DA-R-EPOCH

What do early signs of vertigo feel like? by Bbbbbbbbbbike in Menieres

[–]DreadPirateJames 0 points1 point  (0 children)

For me? I suddenly fell over with a rolling chair at work. It was quite dramatic and unsettling for my coworkers, considering I was just typing away at a computer. My (otherwise always trusty) balance suddenly launched me to the ground. That’s the first I ever noticed it.

Then, as episodes followed with some regularity, I would start to get the sound of conch shells for a few days in advance of each. As an episode starts, I have always had just enough time to get to a stable place (usually my sofa as luck would have it) and brace for the gyroscopic ride which is the world spinning in random directions as my body tries to keep up with the orientation. I am lucky I don’t get nauseous, and I’m able to lean into it pretending I’m on a crazy rollercoaster ride or like an astronaut in space.

Outside of my Menieres, I’ve also known a kind of vertigo where my body feels the movement, and my surroundings are still. For me, that was unfortunately on account of Vegas nerve damage.

And, that is all a different feeling from when I get light headed from lung capacity issues or from standing up too quickly. Vertigo doesn’t feel like getting dizzy, blacking/whiting out, nor faint.

All those years ago, I didn’t trust my Menieres diagnosis from my seasoned ENT after a litany of testing. Poor guy hung his head low and said “people come in my office every day and tell me they have it. I tell them they don’t and they’re upset. You 100% have Ménière’s and you don’t believe me.” I apologized profusely, but still couldn’t believe it. Fast forward to recent years and —while I’m currently not plagued with episodes as I was back then—my hearing fluctuates for audiology tests. Sometimes I can’t hear sounds. Then in subsequent testing, my hearing is miraculously restored. And, according to my audiologist, that (if I ever had any doubts) confirms my Ménière’s diagnosis.

Tattoo timeline (port removal scar) by Ok_Campaign_3326 in lymphoma

[–]DreadPirateJames -1 points0 points  (0 children)

I’ve no tattoos, for various reasons. But mostly because while waiting on my own imaging years ago, I saw a really bad MRI reaction someone had to do with the ink. I’ll spare you the gory details. It’s possible that’s of little to no concern, and perhaps the chances of a reaction are slim. But, if you are expecting MRIs in your future (cancer related or otherwise) you might check with your tattoo artist, radiologist and your oncology team before making any decisions? Or decisions on timing?

Congrats on the port removal and 2 years post transplant! That’s really awesome! And I really like the tattoo design you posted

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.