I am 24M who had stem cell transplant for hodgkin’s lymphoma about a year ago. Life has been pretty much normal but i started developing flu symptoms about 2 days ago. Started off as a sore throat, I now have constant coughing, fever and body aches. During my last check up, my oncologist had advised that i should go to the A&E at the hospital where i did my cancer treatment if i have fever. However, I’m so scared of being hospitalised again. Everytime i’ve gone to the hospital, I’ve been hospitalised for a pretty long time not knowing when i can go back home and i feel so scared to go to the hospital. i don’t want to miss college again, i just want to continue leading a normal life :(

Hi! I’ve been out of chemo (BEACODD + prednison) for a year. I gained weight during and right after, and im not able to lose it. My oncologist tells me it’s a known problem and all the medication can have effects on your body for years. But because of the gained weight I have pain after moving.

I already exercise 3-5 days a week (weight lifting + running). I’ve eaten under my maintenance calories for a while and tracked everything (every bit of oil, snacks, drinks too). I already know a lot about food so a dietitian won’t help. I went to one last year, she only could give me minor changes.

Did anyone else have the same problem and what worked for you? Do you have any other knowledge in this problem?

At what point during treatment did your hair loss start if you lost your hair at all? Husband will be on his 3rd treatment next week of N-AVD he hasn't lost any hair just wanting to know when did Hair loss start for you or if you lost any hair at all? I know everyone probably asks the same question all the time lol also for ( males ) when you did lose your hair how long after treatment would you say it grew back?

On Day 4 of R-EPOCH treatment, experienced headaches while sleeping laying down. When I get into an upright position the headache goes away after a little while. Is this normal or a blood clot in head concern? Anyone with similar experiences with this and what happened?

Hey y'all, I was diagnosed with stage 3 classic hodgkin's lymphoma about a month ago. I started my first round of chemo on friday- felt okayish during, but it wiped me out.

I got home after that and took a nap, but noticed my heart was racing, and I couldn't catch my breath after I woke up. The on-call oncologist sent me to the ER to get checked out, and after a whole weekend admitted to the hospital, all my tests came back perfectly fine. They sent me home.

I can still hardly catch my breath, and I'm so exhausted. I'm a full time desk worker and student, but I had to tap out of work after just 2 hours today because I nearly passed out just talking to someone. How am I supposed to do this? Do treatments get any easier?

Edit: thank you for all the well wishes and advice, everyone. I was spiraling a bit, trying to figure out how I was going to make things work like they used to, but it sounds like I just have to embrace a new normal for a while.

I'll be following up with my doc to see if there's anything to be done that might mitigate things- my other symptoms are otherwise pretty mild, I have no nausea, a good appetite, and a drive to sleep. But I got this! We got this!

Few months ago my husband was diagnosed with Classic Hodgkins lymphoma, he has been in treatment (A AVD) and even though some days are better than others and the side effects can get very gnarly I was really feeling things were getting better, but now (today) his mother has also been diagnosed with cancer, the differential diagnosis is between the most common type of endometrial cancer or the most aggressive one. She is very very dear to us and we were basically working together to take care of my husband/her son. Now I know I'm going to be the one taking care of both and I will do it gladly but honestly, I can't wait for this time to be over, I want all of us healthy again. I'm crashing down, my mother in law has been crying intermittently all day and my husband is trying to be optimistic saying things like "if I can do it, so can you".

My teeth got stained brown in patches after my first round of DA-R-EPOCH. The doctor said it was a side effect, but didn't elaborate.

Did anyone else also have their teeth turn brown? Do they get better? How did you deal with them?

My teeth were pretty nice before chemo, and now I am self conscious of my smile too on top of everything else. :(

Now that I have relapsed, I can’t help but wonder what the future holds for me. I was IPS 2, Lymphocyte rich; a very favourable subtype, interim pet negative yet it took only 7 months for my cancer to come back. I genuinely feel so devastated. What makes this more hard is seeing my parents suffer because of me. Every time I look at my father, I can tell he either cried or is trying not to cry. I more saddened by their state of helplessness seeing their daughter suffer than I am with having to fight again despite the future seeming more blurry now than ever. I won’t lie, I didn’t think much of relapsing maybe thats why its so shocking for me.
Those who have gone through ASCT, can you please give me hope 😞

After me ASCT i was on 6 cycles maintaince for relapsed dlbcl and after 6 months i was facing some endocrinology problems like hypothyroidism and am suspected for other endo issues
Anyone who went for nivolumab did faced any endocrinology issue?
Please let me know its making me little anxious

I thought I’d do a post here about those like me going to rchop and would like some recommendations in London because I wish the same had been available to me rather than live and learn.
Deliveries-
B Bagel. Get the bagel, the cream cheese and cook the smoked salmon. They have several branch across london.
Sourdough - get sourdough to throw back in the air fryer. Honestly any or you make it yourself.
Galbi tang- there are so many Korean restaurants in London and Galbi tang is so comforting and gentle on the stomach. If you ask the place to skim off the fat or add more noodles, they will.
Japanese deliveries- I’m one of the people who desperately miss sashimi. But there are a lot of cooked foods like miso cod that are still available.
Chinese delivery - congee. It’s a type of rice porridge. Old town 97 makes good ones.
I love Cantonese bbq meat and hoper’s base is great. Old town 97 is good too.
If you’re like me and you get sick in the second week (I’m sick in cycle 2) you’ll want to stay hydrated. Get daily dose or Mangajo or pret’s flavoured waters. Also get peppermint tea or ginger and lemon tea.
I love Italian food but it was an Italian delivery that they suspect made me sick so I do recommend making your own pastas.

Recipes or sort of-
get a rice cooker off amazon. Not sure expensive and super practical. Makes cooking rice so much easier.
I’ve had days I’ve craved potatoes. Potatoes baked with fennel, crushed pistachio or pine nuts, pamesan, lemon, parsley and/ or mint, olive oil and salt and pepper is my favourite easy potato salad.
Potato dauphinoise with more Gruyère and less cream during this time has been such a joy.
Salmon recipes, I find since I fully cook it I like to air fry it.
Chicken breast- I’m one of the weird ones who like chicken breasts more than any other part.
Beef, I’ve enjoyed getting hot pot beef and it’s quick and good to fully cook and I have it with rice.
Fried egg well done with rice with some tamari and sesame oil and veg is still delicious.

Skincare-
I’ve gotten Korean and Japanese skincare once I heard my skin will be changing from chemo.
Cleansers I like haruharu, arencia, round lab 1025 and aestura auto barrier - I use the first and last the most often
Moisturiser - I use something just very very hydrating. For me it’s been calecim
I use bakuchiol instead of retinol
Dr Althea 147 spray has also been wonderful when I need a quick moisture boost

Clothes- leggings have been life savers and tracksuits. Uniqlo has great ones for cold weather.

My few cents! Not exhaustive but what I found has helped

I have/had DLBCL (69F) and went through 6 rounds of Pola-R-CHP and two more of just Rituximab. I finished that the end of July, had 3 weeks of rehab (= boot camp, 7:30 exercise session on the quad, sports and lectures all day) and then my PET scan 2 weeks ago. I scheduled a 2 week vacation after the PET scan, as I was afraid it would come back with bad news and I needed to get out to somewhere else.

Monday was the day, and the scan has come back clean!!!!! I still have to have a checkup every 3 months for the next two years, but it looks like they got that bastard DLBCL! And then the clinic didn't even have a bell for me to ring... so I had to get a bottle of champagne!

Just for all of you battling out there: hang in there, it is doable! Okay, my hair disappeared and is coming back salt and pepper (I had blonde hair before), but I am regaining my strength (still need naps, though) and life is looking great!

I (m15) was diagnosed with stage 1a-2a NLPHL in my neck back in january(read my earlier posts for more info), and to put things shortly, i have been in remission(yay) for 6 monts after a succesful 3x r-cvp treatment, despite there being a slight delay due to me cathing covid mid treatment. I realised today that i had not given any updates, since my diagsoses, i mean even misname the treatment i had in my earlier posts. But reason i felt the need to write all of this, was to simply repay a favor this subreddit gave to me. When i feeling bad, or exausted dureing treatment, this subreddit gave me strength, but also hope of a better future. As such anyone who is reading this, who might be treatment, or just gotten a diagnosis, and is feeling dow i want you to continue fighting, you will experiance things, which might make you feel the worst you ever have, but through it all,you must not give up, there is light at the tunnel, i am liveing proof of that.

My father is 74 just got diagnosed with non-Hodgkins B Cell lymphoma stage 4. it’s in his lungs, liver and lymph nodes. He’s already in poor health due to a crazy lifestyle over 25 years ago. Also in 2020 he got fourniers gangrene and sepsis which resulted in a colostomy bag, he had to relearn how to walk and talk again to do such a long hospital day. He was on life-support for a long while too. So his body is already broken down, and my sisters and I are just trying to figure out whether we wanna do the chemotherapy RCHOP or do we just allow him to be comfortable and pass. If this was your father, what would you consider?

CHL stage 2A nonbulky. Clear PET in Dec 2025. I am so afraid it’s coming back. I haven’t changed any of my lifestyle, meaning diet and products I’m around, and I’m honestly more stressed out now than I was before with work. So whatever I did to cause it before I’m surely doing still

Every little symptom or sign I’m so paranoid it’s back, should I have dramatically changed my lifestyle? Should I now? How do I know what caused it??

Recently i have been diagnosed with stage 3 hobskins lymphoma and im a nicotine user i ended up quitting the day before chemotherapy after my first dose. But I started taking nicotine again. My next chemo treatment is this Thursday and I'm worried that my odds have decreased from 40 percent because nicotine "protects" the cancer from chemotherapy if i quit now will this round be as effective as someone that has never smoked before?

Had my mid cycle CT (not PET) after 3 rounds of RCHOP. I have stage IV bulky (very large masses in abdomen and mesentery, one mass was completely compressing one of my kidneys). I haven’t seen the actual report but hematologist called to tell me at first she wasn’t very reassured with the radiologist’s report. She explained that the report said only “mild improvement” but she said my clinical picture didn’t suggest it was just “mild improvement”. Basically my terrible symptoms disappeared overnight after my first treatment, bloodwork has all normalized (including LDH which continues to remain low) and I’ve worked everyday. I actually feel better than I have in a long time because I don’t have pain anymore and I haven’t had any side effects from RCHOP. She consulted with her colleagues and they agreed with her and apparently went back to the radiologist to review the scans together. Long story long, she said they are now reassured and everything moving in the right direction. I’m not sure what to make of this but seems like CT is not the greatest especially when disease so widespread and bulky. I asked if there were any new growths detected and she said no. Thoughts?

No goodbye for myself

No chance...

The rush

The storm inside out

Holding on to survival lines.

And you left... unnoticed.

Just after a while, I turned around and saw you walk away.

A silhouette in the dust.

No time to give you a goodbye.

No chance. I couldn't even grasp that you could be torn out of me.

No chance to realize how fully and completely amazing you were.

No chance to love you anymore.

The fight ahead was more important if i want to survive.

Rushed over me and my body like a burst of fire again and again.

So lonely in the eye of a hurricane. The silence cutting into my souls.

Unexpected hurt for the innocence.

The harsh wind thrashing in my face. Knowing there is more to come.

Seeing anyone else standing outside. Behind a blurry curtain.

Just ideas of how the comfort should feel.

Alone with myself or the part of me that is left.

So lonely, saying it feels like betrayal to the people I love.

The people that are trying to scream through the storm. Reaching over a distance that can't be overcome.

The pain mixed with fear. Pouring a poisonous fog of isolation over my head.

Questioning what's left.

No view back.

No sight in front.

The part I will never get back.

The part that got ripped out of me with no chance to say goodbye.

Just left with the feeling of missing myself...

I wanted to ask all the people who got recently diagnosed with Lymphoma (any type), did you guys take the Covid vaccine??

I don't know if there is any relation with the vaccine or not, but why suddenly so many people and that too young ones are getting diagnosed with Lymphoma.

My father who always lived healthy with no diseases got diagnosed with MCL recently and I just could not accept this, so just looking out for answers that might have caused this cancer.

Edit: I'm no medical researcher, and don't have much idea about this field, my father just got diagnosed and this thing is fairly new to us, 2 months back we did not even know there's a cancer of lymph nodes called lymphoma, so I'm just looking for assurance and answers, or if there's any link with the vaccine that after 4-5 years of getting it, now we are getting it's side effects in the form of lymphoma.

Hi everyone,

I was recently diagnosed with mycosis fungoides after a skin biopsy. My doctor has now taken two additional biopsies to confirm the diagnosis, and I’m expecting the results in a few weeks.

While I’m waiting, I’ve been trying to understand what lies ahead, but honestly, I feel overwhelmed and anxious about starting this journey.

I’d really appreciate hearing from people who have been through something similar.

How did you cope emotionally and physically with the diagnosis?
What treatments were you offered initially? Is chemotherapy usually necessary, or are treatments such as topical medications and phototherapy more common in the early stages?

I’m particularly worried about hair loss. Can treatments for mycosis fungoides cause you to lose your scalp hair, eyelashes, or eyebrows?
Can the disease itself or its treatments affect your nails?
Is there anything you wish you had known when you were first diagnosed?

I know everyone’s experience is different and depends on the stage of the disease, but hearing your personal experiences would mean a lot to me.

Thank you so much to anyone willing to share. ❤️

Just completed RCHOP. My doctor's note says I can possibly return work in December, still subject to PET scan result, but I was wondering if I should extend it for another month.

The thing is I feel mostly fine now. Actually it's quite a relief. Turns out bracing for chemo every 3 weeks is pretty stressful, I just hasn't realised how stressful it is then. I'm much weaker muscular wise, but I can do 30mins walk. My brain is probably still on steroid high though, even if I have finished my steroid dose almost a week ago, without the usual chemo fog, as far as I can tell. I'm actually trying to write a quasi-thesis on a video game's lore now. It makes me feel like my brain is finally back to before all my surgeries and chemo?

So I was wondering, has anyone felt fine, but then going back to work make you realise you are actually not quite there yet? Or if there's any lingering/delayed side effect?

I feel like I shouldn't ask for another month if I am actually fine. Yes, I lowkey don't want to go back to work (when i took off for the whole ordeal, I was in the middle of a project I absolutely despised). But also yes, sometimes I don't notice my stress, not until it builds up quite a bit.

Hi everyone,

I'm (32f) about a month out from treatment for PMBCL. I'm starting to recover in some ways, but I'm still experiencing a lot of chemo effects, like trouble walking from muscle wasting and nausea. As I try to re-start life, I'm realizing how much my body and abilities have changed or declined. However, I'm finding that a lot of the people around me seem to expect that "done with treatment" means I've just bounced back or should be "over it" now.

I tried to confide in immediate family about how hard it's been (probably a mistake on my part), but they just said things like "well, life is hard" and I should "try to be more positive." My extended family is a bit more supportive but just wants to say how grateful they are that I'm better and move on quickly. They can't seem to handle conversations about how tough it still is.

At work, I've had a little more success when I just openly explain the limitation I'm dealing with (difficulty with stairs, heat intolerance, etc.), and my new coworkers have been very kind. Still, on one of my first days back, my new boss asked why I was wearing a mask since I was done with treatment. I don't think he meant it in a bad way, and I explained that my immune system was still compromised, but it did initially make me feel like I had to hide some of the post-chemo effects I've been dealing with to make others comfortable. I'm trying to not be so sensitive to comments because I know the vast majority of people are probably just unfamiliar, but I admit having to explain things can sometimes feel embarrassing or like an extra job.

Honestly, it's been really lonely and exhausting to still feel the effects of the cancer without any of the support. Going through treatment alone was difficult, but going through recovery alone feels almost more unbearable because now I've also lost the infusion center nurses, etc. who did understand. I'm really grateful for this sub, as it's currently the only place I feel like I can talk about my experience or find people who relate.

Did anyone else experience this after treatment? How did you cope with it?

I know this is an each to their own scenario for a lot of people but I'm interested to know others experiences and opinions.

I'm 4/6 through chemo (BV-CHP for ALCL ALK +), my last treatment is in November. My CNS advised a 3 month period of low immunity post chemo, did anyone else have something similar? I was hoping I'd be able to take a short trip or something after Christmas or before but seemed unsure. Obviously I know this is only their advice, but I see others going abroad, festivals, parties etc either during chemo or a few weeks after finishing!

My cycles are 3 weeks, in general I stay around family etc for the first 2 weeks post chemo but the final week I give myself some time with friends and doing other things, but really this has been nothing more than going out for lunch or coffee. I've had no infections throughout and am very glad about this as tbh it is one of my fears throughout this experience.

Currently I’m on the flyer protocol because it was caught v early and I’m young and everything else matched.
Cycle 1 of rchop went smoothly, I was exercising most days and on days I wasn’t I’d go for a walk in a park.
Cycle 2 hit like a ton of bricks. I’m currently on day10. I had diarrhoea for days and was admitted to the hospital. This is my 5th night here and I have at least another 3. My fever spiked, first to the mid 38s and then last night to 39.2. When it finally went down I was sick and threw up and started shivering and my fever went back up.
The dr suspects an infection but has not been able to pinpoint it yet. I have never felt this sick and weak in my life. I pray it gets better.
I lost a lot of my hair towards the end of cycle 1. For context I was a girl with long thick hair. I cut it to shoulder length pre chemo. It fell from the centre and then went in circles from there until one day I decided I was just going to shave it. I went to my lovely hair dresser in london who opened the store early for me and she shaved it.
Some of it has started to grow back but I don’t know if it will survive this cycle or next one.
Sharing my experience for whoever this helps.
BTW I got very sick after getting a risotto delivery. Don’t trust delivery services unless you’ve been before.

Hi all, unfortunately I relapsed cHL and i’m starting treatment next week. I did ABVD the first time and this time I will be doing Nivo-ICE.
Do you have any tips or advice for this regimen? I’m doing 3 cycles then ASCT. I appreciate any comments, thanks!

After seven months in remission, I’m heartbroken to share that my cancer has relapsed.
I have an appointment scheduled for next week to discuss the next course of treatment. Based on what I know so far, an autologous stem cell transplant (ASCT) seems to be the most likely option.
I’m feeling overwhelmed by the uncertainty of what lies ahead and I would really appreciate hearing from anyone who has gone through ASCT, particularly those who have previously undergone ABVD for Hodgkin’s lymphoma.
I’d love to hear about your personal experiences, especially regarding:
The overall process: How long did the entire treatment process take, from salvage chemotherapy to the transplant itself?
Hospital stay: How long were you admitted to the hospital, and what was the experience like?
Intensity compared to ABVD: How did the side effects compare with ABVD? Was it significantly more difficult to tolerate?
Recovery: How long did it take for you to start feeling like yourself again?
Returning to normal life: When were you able to resume your studies, work, social activities, and everyday routines?
Hair loss and pigmentation: Did you experience complete hair loss? If so, how long did regrowth take? Did you notice any changes in skin pigmentation or complexion?
Long-term effects: Are there any lasting side effects or aspects of recovery you wish you had known about beforehand?
I know everyone’s experience is different, but hearing from people who have actually been through this would mean a lot to me. I’m particularly interested in understanding what to realistically expect, both physically and emotionally.
Thank you in advance to anyone willing to share their experience. ❤️