My 25-year-old son was diagnosed with tcell lymphoma in Dec. We got second opinion with MSK . They recommended two weeks of radiation. On plane now heading up from South Florida. Scans and bloodwork Monday. Extremely nervous. Good thoughts appreciated.

Hello everyone, I (F, 32) had shared a bit about my husband’s (42) diagnosis on here, but I lost access to to my previous account after switching phones.

Quick summary;

He was diagnosed with Mantle Cell Lymphoma after having a swollen node on his neck for about 4 years or so (never had any symptoms, so doctors didn’t think there was much to do other than keep an eye on it)

Lymph node eventually grew a little more in size about 2 months ago, this is when this whole thing came to light.

We have a date to start the R-CHOP process.

This Monday.

I am so scared and nervous.

I have direct communication with his Dr. by phone/text but she’s out of the country until Monday. So it’s been a little difficult getting a hold of her for some questions.

Medically we already know what the plan is,

But we were wondering, what should he bring along in his bag?

Of course I think of the obvious essentials, (toothbrush, lotion, pj’s, etc)

But at the same time, I don’t even know if there are things he wouldn’t/shouldn’t use while undergoing treatment.

I’m just trying to help in anything I can so he can be ready.

What essentials did you bring along if any ?

DLBCL stage 4 w/brain, liver & lung involvement and I stopped chemo in Dec. ( 2 protocols - RCHOP and Methotrexate) My pet scan looked good after & I had a brain MRI today. My doctors appt to discuss is Monday. I just got some labs back & im trying not to stress out. My Alkaline Phosphatase levels were flagged as high. Of course, I looked it up and it said in Lymphoma patients that usually means it has spread to the liver or bones.
I try not do the Dr Google thing but damn. All this just makes me feel so weighed down. Can you ever relax? Anyone here ever had labs like that and what did it mean for you?

Has anyone had experience with elevated bilirubin after chemotherapy treatment? Did it go away? What did you do about it?

Hi everyone. I’m currently dealing with a cold. Would I be able to take over the counter meds like usual? I have called doctor but waiting to hear back

Hi all, I’m currently one week away from my second cycle of BEACOP. I was just wondering how people generally felt 1 week before your next cycle. I’m feeling generally unwell and I was wondering if it was due to the break in my steroid prednisone. Any advice would be great 😊

Fell down the rabbit hole today and in the Facebook group it seemed like everyone relapsed after their auto transplants. I know there’s a selection bias in a group meant for relapsed disease, but it’s got me feeling a bit down now that I’m on day +29. So for those of you who did an auto and didn’t relapse, could you tell me about it?

PLEASE do not comment if you relapsed after auto. It happens. I know. I really don’t want to read about it here because I got enough of that on Facebook.

Met with oncologist, will be going to remaining 4 cycles of AVD instead of ABVD. Hopefully that will reduce some side effects (but not hopeful sounds like most people don't report any decrease in non lung related symptoms) even if just placebo haha

What I found interesting is that my lymphocyte levels have been slowly increasing each infusion from~.4 to .8. I take that as maybe another sign it's working?

my SUV at my 11cm mediastinal mass is 1.8 vs 9 a month before diagnosis. mass shrunk about 1-2 cm but likely scar

Half an hour late to my PET scan, feels like all kinds of other bad omens, the lymph node that I hoped was scar tissue seems bigger and I'm having bone pain in the spots the Hodgkins was in before. Really wish I had a xanax 🤣

Here is the link for it. Its only for previously untreated FL and doesn't require chemo. https://www.clinicaltrials.gov/study/NCT06112847?id=NCT06112847&rank=1

I had an appointment with a new oncologist this week who clarified that I have Marginal Zone Lymphoma with plasmacytic differentiation (apparently, not nodal, follicular, or splenic MZL) I first found my tumor in October 2021 and have not needed treatment. If I never got any treatment at all, what would happen? Is it just going to keep growing very, very slowly until I die of something else?

Forgive me, please, for venting. I know how fortunate I am not to have an aggressive cancer. I just feel in limbo. I don't know if I'm waiting for something to happen or waiting for nothing to happen.

MZL is annoying. It's like you don't have anything wrong--but you do. You can't give blood anymore and you can't donate organs. And you can't tell anybody about it because there's nothing really wrong like with other cancers (which is a good thing obviously) and they'll think you're exaggerating for sympathy. And you can treat it or not treat it; it doesn't really matter. Or does it? It's not going anywhere but it's not going to kill me, either. I have ridiculous sweating day and night--but I can't imagine that's worth enduring treatment.

And so if nothing other than sweating is going on, why am I bothering to have doctors visits and blood draws every 6 months? It feels like a waste of time. And don't get me wrong--I know it's good nothing's happening and I don't want anything to be happening. I do wish for my ignorance of MZL back, though.

Hi, I have a lump (swollen lymphnode maybe?) in upper front left neck from January 10th, 2024 (my first R-CHOP-21 chemo on February 6th, 2024). It can be seen only when I'm lying down or prone. The diameter is around 1.5 cm.

After my 3rd chemo on March 19, 2024, why is the lump still there (not shrinking) and it seems that the size is same. My oncologist did not say anything.

I have no idea, is it okay? is my chemo treatment working effectively? When will the lump shrink?

If you have experience about it, please tell me.

Just had an interim PET (after 4 infusions) The SUV of the mass is <2, which is less than my liver uptake~2.5. It originally was SUV of 8. However, the mass didn't shrink much. It went from around 10cm to 9cm.

Are masses expected to shrink significantly to be considered a complete response? Or do masses sometimes don't shrink much?

Hoping to go from ABVD to AVD.

Has anyone had bone aches where they had lesions post ASCT? I’m starting to feel some discomfort in my right Iliac bone where I relapsed from but I find it hard to believe I’ve relapsed already since I’m only at Day +40 and had proton radiation on that area before ASCT. I know it’s still possible but hoping to hear some similar stories that turned out to be nothing.

Hi. My mother has mycosis fungoides stage 4. Anyone know what to expect once it has progressed this far? What does the end stage look like?

Reasons why I’m asking… She has been exhibiting a lot of cognitive changes, ie irrational anger, wild mood swings, crying over the smallest thing, tying to relive the past…you get it.

Her memory is shot, physically she is a hot mess, but she and my father (who just had knee replacement surgery) refuse to consider moving to a home with no stairs within an independent living community.

She is refusing to go the dr so we don’t really know much about her current condition. My guess is he told her news she didn’t want to hear last time so she won’t go back. Being the eldest it’s on me to prepare for what’s coming, so give it to me straight.

This morning my wife (52F) found out she had a complete response to her recent treatment for stage 4 follicular lymphoma. I know FL is not as severe as what a lot of people are dealing with in this sub, but having said that she's been fighting this for a while (first diagnosed in late 2019), and in particular the months leading up to the start of treatment were hell.

She was initially given a choice of treatment - Rituxan + Bendamustine or Rituxan only. A few months ago I posted seeking advice from the community. I want to thank everyone who responded, and especially u/coffeelymph for your kind and wise words that really helped sway our decision, and more importantly, gave us peace of mind that we weren't making a dumb mistake. We went the Rituxan only route, and that did the trick. We are both so relieved and grateful for the outcome.

Hope everyone that is still fighting is able to stay strong, and get the positive results you all deserve.

And I'm freaking out. Stage 4 Hodgkins, I keep reading stories of refractory results, I have a small kid and for the first time I'm seriously panicking about dying. It's so hard to read these percentages and not assume it will be the 15% refractory or the 30 to 40% relapse. I think I just need to vent to this group, who understands what this is like.

Hi Everyone - I'm helping a charity pinpoint services and support that are needed the most once treatments are complete. They want to be able to connect patients with any and all help they need. I know I wasn't sure how exactly to glue myself back together. Trainers, wigs, hormone therapy, regular therapy; does anyone want to share what you feel helped get yourself back on track? Or at least feel better?

Hello, I was recently diagnosed with classic hodgkins lymphoma, stage 2A borderline bulky. I'm being treated with ABVD and have completed my first cycle. I first noticed a swollen lymph node in my neck two weeks after giving birth which means the lymphoma probably began during the pregnancy, especially because it turned out to be quite aggressive - the lymph node in my neck roughly quadroupled in size between initially finding the lump and starting treatment. I have asked numerous doctors if there is a connection between pregnancy and lymphoma and they have given varied responses - one said yes, because of the fact that the immune system must be suppressed so the body does not reject the fetus, thereby reducing the body's natural surveillance system which would ordinarily pick up and destroy a cancerous cell before it has time to multiply. Others have said there is no connection because there are currently no scientific studies that prove a connection. One seemed uncertaiun and eventually conceded that yes, it's possible there is a connection even though it hasn't been proved. What do you think? I have done a lot of research into what puts you at risk of getting lymphoma, and various forms of immunosppression are consistently in all the lists - HIV, autoimmune disorders, immunosuppressant drugs. I suppose my point is, if pregnancy interferes with your immune system so much, how could this not also put you more at risk? Not saying pregnancy would CAUSE the cancer i.e. cause the DNA to mutate, but rather that it stops the body catching it in time, thereby allowing the cancer to develop. Would be very interested to hear others' thoughts.

Hi all, I was diagnosed with Hodgkin lymphoma stage 2...n went through 4 cycle of abvd.. I did my last chemo on March 7 n did my pet scan on March 21..i had a complete metabolic response my onco decided that l do radiation instead of chemo maybe 15 times...so we agreed to the term.. But till now I ve not yet started the radiation it's been almost 4 weeks.. N m freaking out because of the delay.. Does any one have delay their radiation after chemo.. M so worried

Hi all, I did four cycle of abvd finished my chemo on March 7..n did my pet scan on March 21 n it was a complete metabolic response n my onco decided to do radiation to clean up the mess.. But my radiation is not yet started m so worried it's been delaying for 4 weeks.. I meet my onco today n he told me that l start from next week monday... M so worried.. Does any one have experience this kind of delay n radiation after chemo... M so worried

I feel bad today, y'all. Is it okay if I say that?

Is it okay to say like it really does feel like I've been mildly poisoned because that is exactly what happened?

Is it okay to say that I've been wrestling with thoughts about my mortality and the heaviness of my diagnosis and treatment over the past good while?

And all of these questions are pointed towards no one but myself.

Don't get me wrong. Multiple people said that I've been handling this cancer thing in relatively good spirits and I'd like to think that's pretty much genuine. The best comparison I can think of is with Waymond in Everything Everywhere All at Once, a strategic optimism that is a mix of my generally goofy nature and recognizing the personal and social benefit of acting/being more lighthearted about this.

But today is not one of those days where I can deploy that optimism nor do I particularly want to. My brain fog is spoiled milk. My energy is gasoline vapor. My stomach is a fussy baby. My mood is a wet sock.

Despite thinking I resolved this issue with grieving over my mother, my therapist pointed out that I still struggle to accept and express my emotions. I still feel like I need to offer some insight or wit and be rational and justified. After all, if I am just complaining and that is the punchline, what are people supposed to do with that? They would leave the comedy club, and rightfully so.

But this isn't supposed to be a performance. I have cancer. Stage 3 cancer. Yes, it is one of the more curable types. Yes, I am responding reasonably well to treatment so far. Yes, I have enough support around me to make it kind of hard to type through the tears of appreciation. But this is still fucking cancer and it sucks. It sucks that it exists and it sucks that it is happening to me, especially with all of the bullshit I have been through in the past God knows how long. I know it can always be worse, I know having a positive mindset helps, I know, I know, I know.

Just, the choir in my head, just shut the hell up and let me feel bad, say that I am feeling bad, and not feel bad about doing that.

I have pleomorphic CTCL which is a rare subtype of CTCL that grows tumors instead of skin rash. It is "highly recurrent" according to my doctor (I think she just doesn't want to say "aggressive"). First treatment over a year ago was excision and it started growing back noticeably even before my stitches were removed. After that we did 16 rounds of targeted radiation which seemed to work. It shrunk during treatment and then swelled really big before disappearing.

Follow up PET scan was clear 3 months later, but for the last couple of months I thought I could feel it again around the scar tissue, but couldn't be sure. Two weeks ago, it was big enough and skewed enough from the original excision that I couldn't fool myself anymore. My doctor confirmed it last week.

Having a hard time dealing. My doctor tries to be comforting, saying that it's not overly dangerous and is unlikely to spread, but she's also telling me realistically that this is something I may just have to deal with forever because of its "high recurrency". Currently we're keeping watch to see how much bigger it gets and how quickly before making any plans. There are very few specialists in it and the one I had semi-nearby is moving across the country.

There's a local therapy group for cancer patients under 50 that I may join to talk things out, but I'm worried about people judging me for not having "real" cancer.

Anyway, thanks for reading, just needed to share.

Overall I’m very happy with my care but WHY CANT SOMEONE FIGURE OUT HOW TO MAKE PREDNISONE FLAVORLESS. I am so sick of the bitterness and it affecting my appetite and bringing on nausea. Ugh.

It is over for my wife's (37F DLBCL) CAR-T treatment. PET-CT scan has confirmed what we feared. CAR-T failed and she is being transferred to palliative care tomorrow. Main mediastinal mass has grown and she has pericardial fluid buildup and spread over her pleura and some activity in liver and kidneys and bowel. We Will go over her palliative care tomorrow, but most likely the pericardial fluid Will do her in at this point. We dreaded this outcome and knew already this was going to happen when her LDH skyrocketed last week. We knew this might happen when we started treatment. Still, damn this sucks.

Hi all,

5 months ago I had a surgery to remove a swollen lymphnode - turns out it was Hodgekins. About a month and a half ago I finished my radiation plan and my next petscan isn't until May 6th.

In this time frame of finishing radiation and waiting on my petscan I can feel a lymphnode right next to my surgery location swollen up. I vaguely remember there being something there after my surgery but the entire area was so swollen that me and the oncologist didn't think much of it. Now however I feel like the lymphnode is bigger than I remember it being but I can't tell if that's 100% accurate or if it's me working myself into a panic for nothing.

Has this happened to anyone before? They were fairly confident the radiation plan over ~2-3 months was enough to squash the issue but now this other lymphnode is swollen (and may be getting bigger) is it really that quick to come back? Sorry - my anxiety is going wild right now. I'm not sure if I should just call the oncology ward and ask to see the oncologist or if it's better to just wait till May 6th for my petscan and followup 2 days later. 😕

Mom, age 58 was diagnosed of triple expressor DLBCL in Dec 2023. IHC studies conducted on her liver and cervix then indicated diffuse positive expression of CD10 in tumor cells. She received 3 cycles of R-CHOEP, scan after that revealed the development of 2 new brain lesions. We initiated the MATRix regimen, but unfortunately, after one cycle, there was an interval increase in one lesion and minimal decrease in the other (lesion with perilesional edema on right inferior temporal gyrus 16.5×15.5×15.8mm and tiny cortical/subsortical enhancing lesion in anterior aspect of left temporal lobe 6×5mm).

We discussed TEDDI R regime with our oncologist but she isn't supporting that and mentioned that it could cause even aggressive relapse which cannot be controlled and is recommending immediate whole brain radiation therapy (WBRT) with a focus on the lesions along with one more MATRix cycles simultaneously to address the remaining disease in abdomen.

Given the aggressive nature of my mother's disease and its rapid spread, we are in urgent need of guidance on the following:

1. Are there any alternative treatment options to WBRT that we should consider?
2. With WBRT being recommended, would ASCT still be a viable option, or should we prioritize CAR-T therapy?
3. Can focal radiation therapy be utilized solely on the two identified lesions before proceeding with CAR-T therapy? Or is WBRT a necessary precursor to CAR-T treatment?
4. Can we ask our oncologist to consider low WBRT and high focal radiation? Or would high WBRT be needed?
5. Oncologist says there wouldn't be any short term side effects of WBRT and said there might or might not be any long term side effects.

Your expertise and advice would be greatly appreciated.

Thank you!