Hi! My partner currently has the constant complaint that he is bored. I also think he is a little depressed. Having cancer made him quit his job, unable to see friends, screens hurt his head, and he can’t taste well. I’m 1.5 hours away at school, and visit every other weekend. I’m not sure how to help him. He watches shows, plays video games, and will see friends when he can and feels up to it. I don’t know how to help him when I’m at school. I know there isn’t much I can do. Any advice would be appreciated! Thank you.

So apparently I had stage 2 unfavorable Hodgkin’s lymphoma and PMBCL at the same time. They only knew about the HL at first and we did chemo that got rid of all of that so can I say I beat Hodgkin’s lymphoma? Anyways now that that’s gone they tested the mass again because it was a small area that still lit up and now that’s pmbcl. So we don’t know if it’s been there this whole time or it came at a different point but two at once is insane. Has this happened to anyone else if so what was your treatment plan.

Looking for other stories similar to this:

My sister has done chemo, auto stem cell transplant, immunotherapy (brentuximab and keytruda). Has had lymphoma for the past 15 years, 5 different times. Keeps relapsing. Was told recently the keytruda WAS working until her recent PET scan confirmed it was no longer working and now different locations have lymphoma.

Next plan of action is a donor cell transplant.

What was your experience like with this? Side effects? Prognosis? What's next if this fails?

Hoping for the best 😢🥺

We were denied AVD plus Nivolumab by our insurance company. They are asking for a “peer to peer” conversation with our oncologist before reconsidering. What is your experience with insurance companies concerning this process?

Problem is, our current oncologist (not lymphoma expert) changed her diagnosis after a second opinion (expert in lymphoma). My wife went from stage 2 to stage 4.

We can’t go with the expert bc he is out of network. Only reason we were able to see him is because I paid out of pocket for the consult.

The current (non expert) oncologist seems slow to act, and I consistently have been calling her and insurance company for updates. Not sure what to do next. Anyone pay out of pocket? I’m thinking of trying that route.

I just want to say thank you to everyone on this thread. There's been so much uplifiting content here lately and it has really helped me. I'm currently recovering from chemo and radiation for Hodgkin's lymphoma. I'm dealing with a lot of emotions surrounding my hair and overall anxiety. Although I have a fantastic support system outside of this, I feel sometimes like people don't truly understand unless they've been through it themselves. This has made me feel less alone and improved my outlook for my life after recovery. So thank you :)

(English is not my first language)

I noticed when looking back to my pictures right before i got diagnosed that one eye if more open that the other eye It looks like a big eye and smaller eye? Is it related to lymphoma or cancer in general?

I got diagnosed with stage 3 Hodgkin’s lymphoma in January 2024, I had chemo (BEACOPPdac and ABVD) which finished in July 2024. I got told I was in full remission after a negative EoT scan in August.

Since then, I have been experiencing itchy legs/arms/underarms and lumps under my armpits/in my left breast aswell and tiredness. I have an appointment with my consultant next week.

I’m wondering if anyone else has experienced this in remission and if it led to a relapse?

Edit- I had a vaccination for the flu and pneumonia on the 23rd of October but before that I had the itching and the lump in my right armpit at the start of October, the itching started to improve but then I had the lump show in my left armpit on the 30th followed by the lump in the upper quadrant of my left breast.

Had my first round of R-CVP on Wed (today is Friday). In the Oncs for total of 7 hrs, much longer than my original round of 'R only' two years ago. Was having minor night sweats and joint pain for about one month before treatment (I knew something was up). Well the first night after chemo it's like I walked into the shower and then climbed into bed without drying off. Last night was better at least I don't have to change the sheets again. Some headache for the past 2 days, no nausea, hooray. Appetite sucks, but it always has. I got a feeling I might just survive this shit. Second round in 3 weeks. He's shooting for six.

Has anyone that is lactose intolerant tried Lenalidomide treatments? Will Lactaid pills help?

No, we're not asking for biopsy results that came back "Positive." We want to hear good things that happened last month. Big, small, or in-between, share whatever has you feeling good recently.

We aim to make this a recurring monthly post on the 1st, but you're of course still welcome and encouraged to post your own successes throughout the month as well. :-)

​

Thank you to playingnaked who has posted these in the past, and also to SparkleDammit who suggested we make it recurring and more frequent!

I just finished my last chemotherapy after 6 months of ABVD for stage 2 Hodgkin’s Lymphoma. The last treatment was very difficult, probably the most nauseous I’ve ever been while receiving the infusion.

my PET Scan will be in 2 weeks then a meeting with my oncologist a week after that.

I’m nervously optimistic, the oncologist said that I will be absolutely fine so there’s that to go off of.

Very excited to not shave my head anymore I can’t wait to have eyebrows again

I’m so glad to have all this time to feel well now that I won’t be poisoned every 2 weeks!

I BEAT STAGE 4 HODGKINS!!!! I was diagnosed in July with stage 4 nodular sclerosis Hodgkin’s lymphoma and after 2 cycles of Nivo-AVD they found no evidence of disease in my interim PET scan. I am so thankful and incredibly relieved. I still have to finish the 6 months but man was this a wild ride.

CT found what looked like a huge mass in my left lung. Lung biopsy was ordered, everyone was preparing for lung cancer.

For weeks I was Googling the morbid lung cancer statistics. Getting lung cancer pamphlets from the MacMillan Centre. Preparing for death.

Today I went in for my follow up. Biopsy shows lymphoma, not lung cancer. It's growing around my lung and pressing on it, not in it. The respiratory oncologist smiled as he told me the news. He said I'm very treatable. My lung cancer nurse was delighted for me.

The tone was "If this was lung cancer- you'd be fucked. You have a chance." He said he was good friends with a great haematologist and would pass on my details right then. I'd already had a missed call from him before I'd even gotten home from the hospital.

It's strange. Today was the first time a doctor has confirmed to me that I have cancer, but it's the most hopeful I've felt in weeks.

I’m about to have my 3rd infusion and unfortunately i’ve noticed i don’t start to have “normal” energy levels or tolerable levels of bone pain and nausea until a couple of days before my next infusion. A swollen tongue is also an issue to. if anyone has tips for these symptoms, to not get them to make. them last a shorter time or to be less intense that would be great!!

My 13 year old just finished 6 cycles Nivo plus AVD for NSHL stage 3B primarily in neck, chest, and 1 near abdomen. His interim pet after 2 cycles showed all resolved and decreased in size but 1 lymph node in level 2 cervical neck area with suv max of 4.4 down from 17. It decreased in physical size. His end of treatment scan 3 weeks after last treatment showed same lymph node up to suv max 5.6 but decreased down further to sub centimeter. He had a lymph node go up from suv max 1.6 to 2.7 in same neck area but sub centimeter. The radiologist noted inflammation in thyroid, tonsils, and thymic rebound. The previously resolved abdomen node was up to suv of 3.8. Everything else resolved. DS 4.

His doctors said it is 99% inflammation and we have another scan 9 weeks post treatment. If still showing uptake then biopsy before further treatment. Anybody else experience this?

Other info - he had fevers after first two treatments within 3 hours of finishing infusion (Tylenol resolved this and they upped Benadryl/slowed Nivo bc he was flushed during this infusion)and was hospitalized with neutropenia. Starting cycle 2, we did the Neulasta shot which fixed that. We believe this indicates his body was responding. Thyroid levels creeped up to hypo levels but never crossed the line as of cycle 5.

I’m using my account as a countdown to the end of this cancer. i’m getting NIVO-AVD i’ve done 2 out of 12 treatments, 1 month out of 6. If my maths correct my last infusion should be March 3rd of 2026. i’m counting down to that day.

1/12 - ✅ 2/12 - ✅ 3/12 - 4/12 - 5/12 - 6/12 - 7/12 - 8/12 - 9/12 - 10/12 - 11/12 - 12/12 -

So I want to preface this was unintentional, but unfortunately I had washed a shirt and pants of my girlfriends with my clothes.( Including my underwear)

I remember being told you should wash those separately and it totally spaced from my mind since it was my first chemo.

My girlfriend is quite scared that she is going to lose her hair now and that she is going to get some of the symptoms I had from chemo.

Can anyone offer any insight into this?

I already plan to keep our dirty clothes separate now and it won't be a future issue, but she's now mad at me for forgetting and I feel bad about the mistake.

We both have Waldenstrom’s. I got it at 40 and have lived with it for 8 years (on my fourth treatment… a daily 3rd generation BTK inhibitor).

I only learned my friend had it when I posted on a message board for people with Waldenstrom’s and he informed me he’d been living with it for about 9 years at the point. He was 54 at the time he told me.

We weren’t close friends, but we worked together and he was somebody I admired. When I was diagnosed, I went through two years of treatments that failed and then started a first gen BTK that I took daily and worked for 4 years. Now I’m on a clinical trial that has been working for two years.

When I asked him about his treatment, he told me he’d done Rituxan for the first couple of years and that got his disease under control. It didn’t sound like he had to do much of anything for the decade after as his disease was under control.

For whatever reason, I thought about how I hadn’t heard from him in a while and looked him up online and saw he passed two months ago, his story appearing online. (He was a successful writer.)

He died at 63… it sounds like it was due to sudden complications from Waldenstrom’s. It’s been a bit of a mindfuck all day. I have two boys, 9 and 11, who I’ve managed to keep my condition from because cancer=death to them already and, I look healthy so, you wouldn’t know.

Guess it’s just thrown me. Living with Waldenstrom’s is so often discounted as “one of the best lymphomas to have,” but the average age of people who get it is 65, not my age or my friend’s age. And while there are “plenty” of treatments available, I’ve already been through the top ones… not without side effects.

In my medical chart, my doctor describes it as it really is… Stage IV lymphoplasmacytic lymphoma. Hard to grasp that on a day to day basis.

I dunno what I’m really saying here other than, I try to live realistically, and realistically speaking, I’ll be very lucky to see my kids grow up and start families of their own. I hope I do, but I just don’t know. (I know that technically nobody knows what happens from day to day, but… hearing that/being told that doesn’t make me feel better. It’s toxic positivity to me and an unrealistic comparison that denies my daily reality.)

Hearing this news was not how I thought I was going to start my day. 63… he didn’t even reach retirement. Feels like you couldn’t write a bigger F you ending to somebody who worked hard his whole life and I can’t help but think, that may very well be my future roo.

Hey all, I was diagnosed with DLBCL in June of '21. I did a pretty intense round of R-CHOP that finished up in November of '21. While I had to spend every other week in the hospital, our house was broken into, my wife had our first child, and we moved into a new house. I felt helpless like I'm sure a lot of you have.

The main symptom that got me to go to get checked out was that I had a cough that wouldn't go away. Once they started questions we realized I had a lot of other red flags. One of the main things was night sweats. I didn't think anything of it at the time, I thought I was just sweating because I was hot. Well, over the last 3+ weeks, I have started having them again. Not as bad as 2021, but enough that we wash the sheets twice a week.

I know the easy answer is to just go get checked out, but I feel like this community knows more than anyone how much I don't want another scan, another needle, another sit in a waiting room. I have no other symptoms. Has anyone else dealt with anything similar? Am I just (hopefully) being paranoid?

Hi All,

Just finished my first round of Repoch 5 days ago.

I’m having stomach issues. Everytime I eat or drink anything my stomach “activates” and all sorts of discomfort, gas, burps and churning takes place. I feel best in the mornings before I eat and as soon as I eat something or drink a significant amount of water it all begins…

Has anyone experienced similar symptoms? How did you resolve them? Medicine? Marijuana? Any and all tips would be appreciated. So far I’ve tried Zofran and Pepcid with minimal relief.

UPDATE: I tried Zofran again and it did resolve the stomach issues for the day, but it came with an almost instant headache and sweats. The headache lasted throughout the day. Going to talk to my care team, not sure if Zofran daily is the best option for me.

Hi,

This is my first time posting here. Like all of you, this was a club I would have liked to never be a part of, but found myself in nonetheless. I just wanted to share my story with everyone, now being on the other side of cancer.

I was diagnosed with nodular sclerosis classical Hodgkin’s Lymphoma stage 2A, unfavourable when I was 23. Two cycles of ABVD later (4 sessions), interim PET scan came back completely clean, continued with ABVD for another 4 months (total of 6 cycles - 12 sessions), final PET scan showed complete remission status.

3 months later during my first check up, scans followed by biopsy confirmed that I had relapsed. This came as a shock, because according to statistics, chances of relapsing were low given my initial response to the ABVD. 3 cycles of ICE, stem cell collection, BEAM, an autologous stem cell transplant, and 12 cycles of Adcetris/Brentuximab (immunotherapy) later, I was in complete remission again.

I spent 2 years, almost to the day, getting treated and a few years afterwards recovering, both physically and mentally. By the time I was done my 20s had passed me and for the longest time I felt like I had been robbed of my “prime years”. While this is partly true, I can honestly say now, being in my 30s, that I don’t feel that way at all anymore. On the contrary, I am absolutely loving this stage of life.

I am 32 now, been in remission for almost 7 years. Annual check ups ended last year. I am healthy, I work out, I have a family and a kid and live a very normal life. And aside from the port scar on the right side of my chest, if you were to meet me today, you would never be able to tell what I had gone through unless I said something. For a couple of years now, I only think about cancer when I am reminded of it. But it no longer occupies my every thought like it used to.

Just sharing this here because when I was going through treatment, reading stories from folks who had recovered and moved on gave me so much hope. And I hope reading this gives someone else having a shitty cancer day some hope as well.

Edit: I hope I chose the correct flair.

I am curious is there anyone on here that has relapsed after 10+ years in remission from classical Hodgkin’s lymphoma? I relapsed after 12 years and from my understanding it is quite rare, somewhere in the single digit percentage.

In May, I was diagnosed with a 10 cm x 6 cm mass on my spleen which was determined to be a DLBCL. I finished cycle 6 of DA-R-Epoch just over 4 weeks ago. Today was my post treatment PET scan and follow up with my oncologist. I am officially in remission!

Anyone else found after starting chemo that drinking from a stainless drink bottle seems to taste and even smell horrendous? At first I thought it was because everything tastes off but I’m noticing drinking out of glass tastes a lot less bad.

Hi there!

Stage II DLBCL gang here. (CD19+). I’ve (25M) gone through 6 rounds of R-CHOP after they diagnosed it from a biopsy performed to the tonsil I got removed from surgery back in April (couldn’t get a total tonsillectomy because I have haemophilia, sigh).

Chemo worked quite well, getting rid of all the tumors (no tumor activity on PET scans could get detected since the third round), even though there was a small inflammation around the area of the remaining tonsil in one of the sides of my neck. I finished my sixth round last month.

As you all know, the only way to make sure that this is just some sort of residual inflammation and rule out that it’s refractory is to analyse the affected tissue, and I try to stay positive through this even though my haematologist is worried because my lymphoma was extremely aggressive. I’m scheduled for surgery next week (total tonsillectomy this time around) because of that, haha.

She thinks this will be a false positive because the detections on PET scans remained stable for many months (the activity only increased a little the past few weeks, but not by much, considering my previous tumors increased multiple times in size every day, and the fact that ALL the tumors completely disappeared in no time).

Is it okay to try and think that this will be a false positive indeed? My neck currently hurts but it’s true that I can’t stop touching the area where the tumors first started growing so I’m sure it’s just me freaking out (told the doctors already, they’re not worried). I’m eligible for CAR-T treatment if they confirm it’s refractory but, yeah, I’m not too excited about that or transplants.

Good news is that it took me 5 rounds to need filgrastim (and my blood tests are already pretty much perfect again apparently). My doctors also keep telling me that I’m really strong, even though my arms veins are already kind of giving up. (But I assume it’ll get better with time!).

I’ll be able to excuse myself and eat as much ice cream as it’s humanly possible for a few days after the surgery though 🙂‍↕️ (did I say that haemophilia sucks?)

Sending hugs and love to absolutely everyone who knows someone or are the someone who’s going through something like this. You are the clearest definition of human strength.

M22 Hi I’m about halfway through treatment and I miss fruits and veggies! I really miss my favorite food strawberries. Does anyone have a good method of cleaning that that would make them safe or should I avoid them all together. I want to know what I can do to get more fruits and veggies to eat and how I can clean them to be able to eat fresh food. If anyone has any advice or ideas I’d love to hear them. But if you guys eat strawberries let me know cause I really really miss them.

Stage 2 NSCHL

Just finished 2 rounds (4 treatments) of ABVD last week. I got a PET scan yesterday and it looks great. Met the radiation doctor today and he thinks I should be done with chemo and move right on to 10 sessions of radiation. I don't meet the oncologist until tomorrow but the last I spoke to him, he thought I should do 2 more rounds before radiation. Onco has NOT reviewed the PET scan yet.

What the rad doc said was that 2 rounds ABVD with this outcome + 10 rounds radiation and I should have a 10% chance LIFETIME of a relapse.

Anyone else get this outcome? I am curious if they will disagree and what to do if they do.

Edit: onco and radiation doc talked and I need to complete two more rounds. Exactly what everyone said here. Thanks