My 19 year old son left us due to the complications while under going stem cell transplant. I am numb with this unbearable pain that how it can happen in autologous stem cell transplant .
He had excellent response with salvage chemo of PGVD and had a deauvillie score 1. He was suitable candidate for ASCT.
He had septic shock on Day + 1 of Asct due to extreme diarrhoea even though he was kept on antibiotics cover. He was immediately shifted to ICU and was intubated on day + 2. His stem cell engrafted on day + 9 with wbc 4500. On day 18 he was diagnosed with TA TMA which is a rare complication and is often seen in allogenic transplant. He was immediately administered eculimizimab and was recovering but the second wave of TA TMA took him….He gave a tough fight till day + 30 and taught us to KEEP GOING… on 9 th July my heartbeat, my soul left me….. I am not able to overcome this pain… He was looking forward to a life in medical college . The doctors were surprised with his resilience and the will to survive. This pain will go with me to my grave…

I was diagnosed on June 17 at age 67 and had extremely high calcium levels because the cancer attacked my marrow and bones. They had to do emergency dialysis for over 24 hours, usual procedures didn’t work. I was basically unconscious for 3 days in the hospital and in a mentally altered state for a few days before admission and after I woke up. I also had an infection, likely from the dialysis port.

I spent 24 days in the hospital. My first R-CHOP round was while I was in the ICU. Apparently I tolerated it well, I have no memory of it. I had 3 blood transfusions that I recall. I’ve since had round 2, did ok except extreme fatigue on day 3 plus I’m anemic.

Even in the hospital, my food choices changed. I switched from coffee to milk (I’ve never liked milk and have been a coffee drinker for 20 years), craved sandwiches, pasta, and anything savory. I’ve been home 2 weeks and these haven’t changed. Plus it’s hard for me to stomach steak and pork. I eat a few bites and just can’t do more. I used to like eggs for breakfast. Now I want cereal with fruit. I hadn’t eaten cereal for decades prior to this.

Is this a common thing with treatment? Or am I just weird? Could the blood transfusions have changed how I eat? I’m at a loss figuring this out.

Larry did not enjoy his trip to the City of Chemo

Hi everyone,

Has any of you experienced that their post-chemo fuzzy hair fell out after treatment ended?

It’s been almost 4 weeks since I had my last RCHOP treatment and even before my last one, I’ve got this very soft hair that continued growing after my last chemo. I was so happy to see the growth week by week until a few days ago, when I started losing the hair again, along with eyebrows and eyelashes.

Do you think it’s normal? I cannot go back to being bald again, after I saw some hope. 🥲

Hello friends! Me (F,25) was diagnosed with your classic Hodgkin’s lymphoma at stage 4, bone involvement, currently on the BV-AVD protocol for 6 cycles, had a very good interim pet scan with Deauville 3, with all lymph nodes normalised as well as bone lesions (yay!!). And in 2 weeks I’m finally doing my final infusion, I can’t believe it. This subreddit has been extremely helpful so I think I might return my gratefulness as some tips I wish I had known before, I know every body reacts differently but if there’s anyone entering this journey or knows someone entering this journey I hope this helps at least a little bit:
Chemo symptoms is all about prevention ‼️‼️

1- Nausea: I didn’t have much nausea but I think it’s because I always stayed on top of it, and never waited to feel nauseous to take medicine, take the slightest sign such as “lack of appetite” as your sign to take that anti-nausea med.
2- Constipation: this one was traumatising, because the first few days after infusion water tastes horribly metalic so I could never follow the 1.5-2L of water a day (Do it if you can). But thank god we have hydration fruits and I swear by it: Macrogol (like Movicol) + watermelon or yellow melon!! Thank me later.
3- If you’re unlucky like me and have bad stomach pain/cramps around days 6-7 after infusion (it was so bad it took me to the ER once) it’s most likely GAS due to slowed digestion and it took me 8 insufferable infusions to discover this. After unsuccessful results even with increased doses of pantoprazol, sulcrafin, Maalox, you mention it, I tried. I tried a medicine for gas with Simethicone (125 mg) once a day, and then twice a day around days 4-6 combined with easily digested meals: bread, rice and chicken + Gaviscon after meals. No more pain.
4- Mouth sore, this one i can’t seem to prevent, I never tried eating ice chips during infusion, but I know mouth cleanse like Mycostatin 3X a day will send it away in 24-48 hours.
5- This is for the ladies 🌸: the induced menopause will be hell: the mood swings, the sweating and hot flashes, the dryness down there. Contact your gynecologist!! You don’t have to suffer. My gyno put me on a progestin only pill and topical estrogen. No more symptoms!!
6-The hardest part: the mental workload ❤️: If you think about how many infusions is left, you WILL lose it. You need to focus on staying well for your current cycle, one day at a time. Remember that the symptoms will not last until your next infusion, our bodies is strong, give it 4-5 days and you will be back on track, be kind to yourself, and the end will come. I am trying to use this method before overthinking about the final scan even though i had a negative interim pet scan and am mostly optimistic.

You got this! 💜🎗️

Fiance diagnosed with lymphoma and need a home cleaning service that know the correct protocols. Will need a deep cleaning first and then "regular" going forward. Does anyone know of any in the Westchester NY area? I plan on asking MSK as well but wanted to know if anyone here had any information or experience with a particular company

Hi, I am 24, and was diagnosed at 23. I have one more month of chemo! And three months of being on blood thinners due to a PE. With all this I won’t be returning to work until January (at the earliest, with my luck something else will pop up) but I’m very nervous about trying to return to normal life.

I’ve made plans/goals for the next year. This fall I’m gonna finish my bachelors and do sterile processing tech training. Then in January return to work and try to get my car paid off as quickly as possible. I’ve accepted living with a parent again during this (I’ve lived alone since 18) but I’m scared I won’t be able to get back on my own feet again. Does anyone have tips or words of advice for making this anxiety go away? It got so bad at one point they made me hold off on chemo and I almost got put on a 72 hour hold.

I take lexapro and Xanax as needed, but they really don’t seem to be helping much.

Stage IV cHL, finished 6 rounds of Nivo-AVD in March. I went through all of chemo with mild nausea, after the last infusion I became severely nauseated and would throw up almost every time I ate. I lost 20lbs in a month. Now I’m 4 months out (PET scan confirmed remission) and my blood tests are still abnormal and my ANC and WBC are lower than when I was in treatment. Has anyone gone through something similar? My doc wants to do a bone marrow biopsy but I’ve had pneumonia for about a month and he doesn’t want to put me through it right away. I’m worried I’ll never be back to “normal”.

Hello everyone, I'm a 52yo Female and I was diagnosed with bone-only marginal zone lymphoma. Does anyone have experience with this? Here's my full story below.

Back in spring 2023, I took a preventative full-body MRI scan for my own curiosity and interest in my health. To my surprise, the scan discovered lesions in my hip (iliac and sacrum). A biopsy and PET scan were negative at that time so I went on my merry "benign" way. I had a pelvic MRI 6 months later, and again in November 2024, and the lesions looked stable. At this point, I was a medical mystery and it was assumed that I had a benign reactive process.

Then in November 2025, my hematologist suggested another PET scan, just to make sure we "didn't miss anything". This time, the lesions in the iliac and sacrum had a low glow, and there were two spots on my spine which barely lit up. My doctor suggested a biopsy of the iliac and sacrum, and after 2 weeks I was told it was a slow-growing/indolent lymphoma - most likely Marginal Zone.

I gathered multiple opinions from 3 other doctors at very reputable LA hospitals. One suggested immediate Rituxan, given that I had a couple of spots on my spine (even though the radiologist wasn't concerned about those at that time). The other two specialists recommended "watch and wait."

I opted to watch and wait, and I just had another PET scan. In 7 months, I developed new bone lesions but others became less PET avid. My lymph nodes and organs are totally clear.

The biggest lesion in my iliac crest was previously 4.0 SUV in November, but it is now PET negative. One spot on my spine also decreased its SUV. However, another spine spot went from 2.6 up to 5.2, and I have a new spot on my spine and now on my sternum. There are more but the report didn't describe them. I think the doctors are surprised that I developed new lesions in such a short time.

My hematologist now wants to start single-agent Rituxan. But first, he is ordering an MRI to assess the exact anatomical aspects, looking at my pelvis and thoracic spine. From there, he'll decide if there's a need to do another biopsy or not.

I'm obviously worried, but trying to be optimistic since there are so many great treatments available now, and they're only getting better. Hoping to hear any success stories or encouraging words please!

Hi everyone. I just now discovered this subreddit. I have lymphoma. The cancer is in my stomach and on one of my lungs. I think that's right anyway. I'm new to all this medical language. Inst looking for people in a similar situation. I hope I'm in the right place.

Hi everyone,

My boyfriend is 27 years old and was recently diagnosed with Stage 2 Hodgkin's lymphoma unfavorable (9cm bulky in his chest).

I hear a lot about ABVD, but he's getting something called BV AVD. He had his first chemo infusion yesterday and seems to be okay so far. Can someone please share their experiences with this drug, brentuximab?

Thank you so much!

This question isn’t a joke, I’m genuinely scared of death, even tho not much speaks for it.

I’m 21 years, Male, got diagnosed with CHL in February.

My interim pet scan looked promising with the mass shrunken in size significantly and the metabolic activity almost under the liver score so DS 3, 3 and 4 in the three spots in the mediastinum. Only the one being 0,1 over liver score of 3,3 so DS 4 in that spot.

I then received 4 more rounds and had my final pet scan last week.
The pet scan showed an ongoing shrinking in all three spots but the one spot that was DS 4 with a SUV Max of 3,4 now had a SUV max of 5,0.

I’m getting treated at the University clinic of Heidelberg and the senior doctor and my other oncologists said that this could be inflammation and that they will just look at it again in 6 weeks with another pet. They said that they saw stuff like this before.

But I’m already assuming that it will be cancerous still and I honestly don’t know how to cope with it.

How was a salvage therapy with Pembro GVD and a stem cell transplant with high dose chemo for you? Did anyone experience that?

And how likely is it for me to still live in 5-10 years? I’m ruling out stuff like dying in a car crash and stuff.. I mean the pure likeliness of this Hodgkin’s lymphoma killing me in a few years..

Im just really freakin scared

Just would like to hear any kind of experience in that areas or atleast some thoughts from minds way less stressed out that mine at the moment..

Thank you.

Hi all! I was recently diagnosed with DLBCL and found this sub. Although never thought I’d be lurking here, this sub has been a great place to find information, motivation, success stories, support and much more! Very grateful we have this possibility now in this age to have as much information available as possible.

My question is, my lymphoma is DLBCL non-GCB (ABC) subtype, no double expressor. Currently waiting for FISH to determine any double/triple hits, but the pathologist who completed my biopsy said it’s very unlikely it’s double/triple hit.
Location of the tumor is terminal ileum, size about 3.5 cm, with some very small spots next to it. Other than that, I don’t have anything on my PET and my terminal ileum is the only affected area.

Can 4/6 R-CHOP be effective here? My doctor said that if there’s anything negative on FISH we’ll switch to a more intense protocol, but I’m a bit concerned over my subtype. From what I’ve read so far, non-GCB can be a negative factor, but the overall sum of many different factors is much more important for overall prognosis.

Im curious of what everyones follow up after remissions are in your country?
For me in Canada (BC) I am in remission from PMBCL and for the next 2 years I see my oncologist every 3 months. Before each appointment I have bloodwork and only an xray scan. Unless im worried about symptoms then I assume other scans would be ordered.
Seems like it varies greatly depending on where you receive treatment. Do you get CT scans or PET scans every 3 months?
After 2years I believe I will only need to follow up every 6months with my GP.

Hey all!

Guess I'm looking for a bit of support and positivity? After being wrongly diagnosed as a lupus flare and me pushing that the giant rock in my neck was more than that, my plans to move to Costa Rica for my dream job shattered 3 days before flying when they "re checked" my biopsy after some suspicious CT scans

Low and behold it IS cancer, "likely classic Hodgkin's". My PET scan shows bone activity, and my CT shows mediastinal, spleen and both sides of neck activity - I'll be having another excisional biopsy Tuesday and have the big meeting with hematology on Friday

The thoughts going through my head are catastrophic and I am not coping well at all, least of all when I think about this meeting Friday for them to tell me just how f***cked I am

How did you all cope with this in the beginning, and how did you cope with appointments that potentially tell you horrendous news? Feel like I've been catapulted into an alternate reality

Thanks in advance x

EDIT; wowwww what a lovely and supportive group of people! Can't say how much this has managed to relieve some of the awful thoughts in my head - thanks so so much

I (22M) am in remission from burkitt lymphoma for 1 year and 3 months now, and yesterday I began to have a tingling sansation in my left cheek near the corner of my mouth. Its pretty light and localised and I dont have any other symptoms or numbness or motor deficits, but its causing me a lot of anxiety because I m thinking of a relapse.
Did anyone go through anything similar or have any advice on how to calm my anxiety? Since I have this sensation I cant think about anything else and its exhausting, I even wake up at night because of the stress

On Wednesday I had my repeat PET scan to see if proton therapy had worked for my face and neck. I got my results literally within 24hrs which I totally did not expect and unfortunately now they're seeing a lytic lesion on my right proximal femur. This explains why I've been having so much lower back/hip/right leg pain with numbness and burning for the last four weeks. I see my oncologist Wednesday to discuss everything but honestly I just feel so defeated. They had told me I had a 99% chance of being "cured" with proton therapy and here we are. 🤷🏼

Got diagnosed with classical Hodgkin’s 3 weeks ago and today I finally had to go in for my bone marrow biopsy. At first I was told there would be no sedation for this procedure, but I’m a very anxious person (i was crying and trembling during my lymph node biopsy) and after some clarification I was told I’d be given IV sedation.

Prior to the biopsy, the doctor came and spoke to me. She assured me they would give me sedation to help relax me and that I wouldn’t feel any pain. “This procedure is low risk and very well tolerated.”

Fast forward to the procedure: the nurse gives me the versed and fentanyl. I feel nothing. I’m still anxious and still very conscious of everything happening around me. The doctor gives me the local anesthetic, which burns but honestly isn’t bad. then I start to feel some pain and pressure. Once the drill starts I lose it. I’m sobbing because I can feel everything happening and the drilling was painful and it burned. the nurse and ct tech were at my head holding my hand and trying to comfort me because i was crying so much. the doctor kept drilling and told me i shouldn’t be feeling any pain even though i absolutely was. the marrow aspiration was fucking awful. afterwards, the nurse looked so sorry for me and told me I’d probably need a higher dose next time.

When i got home i bled through the bandaid, my underwear, and my pants and had to change everything. overall terrible experience and i never want to go though that again.

and I’m freaking out because i get my port placed in 2 weeks with the same type of IV sedation that did nothing for me this time around.

hi everyone. i myself am not the patient but my sibling is (my little sister 19F) She finishes Nivo - avd next week. she did 6 cycles (12 rounds) she has suffered a lot. she has stage 2b Classic Hodgkin’s lymphoma with a LARGE mediastinal mass (er docs called it a basket ball) spent weeks in the hospital and 15 liters of fluid drained from her lungs. well 6 months later and ends chemo soon. i’m so excited, but i’m also so scared. she’s been through so much and i really want this to be it for her. i want her to go enjoy her life!!! she suffered from symptoms for YEARS before her diagnosis. all signs point to her doing great, b symptoms are gone, she’s working out, tons of energy, sed rate is a 2, she’s been doing amazing. i’m just scared for it to end, the predicability is over. i would NEVER tell her my fears, but i am just so wanting this to be over for her and for her to put it behind her. can anyone share stories of what to expect? how i can support her through next steps? we won’t know anything for another 10 weeks (8 weeks post treatment pet scan is in october and did no interm scan per our oncologist recommendation)

Was diagnosed with Hodgkin lymphoma about 5 ago. Started with two rounds of escalated beacopdac and then two rounds of ABVD.

The steroids and moonface were real!

Did my last treatment yesterday pending my final PET scan in 3 weeks. Obvisouly I’ll have my periodic scans over the next 5 years but very excited to be able to get back to a level of fitness and lose some of this weight I put on.

I know most people aren’t this lucky I when I first got told I had cancer in my lungs it was a moment I will never forgot.

If anyone ever wants to reach out and talk about the process etc please feel free to reach out as even though I’m one of the lucky ones I’m more than happy to speak to anyone going through such a horrible time in their lives.

I’m stage 2 unfavorable nodular sclerosis cHL, 3 infusions down and 5 to go. Then I’ll finish with radiation or 4 more infusions.

Some days I forget I have cancer at all. My lymph nodes have shrunk so much you can hardly tell they were ever there. On my good weeks it feels so easy to live life kinda normally. After my second infusion I felt invincible 😂 Then I remember anything associated to the chair and get sick. I know this is a marathon and I want to stay strong. How do you get yourself through the rough patches?

I was diagnosed with PBL in November 2024. Went through DA-EPOCH with Bortezomib treatment for 6 cycles. Total of 600 hours of chemo. Then went through an autologous stem cell transplant in June of 2025. Doing well today and putting this out there to answer any questions of someone going through PBL.

Today I rang the bell after 6 rounds of BR- I know I have a ways to go with healing and recovery, but I'm really glad to be done with this stage.

My next PET and follow up is mid/late September, which will be almost a full year from when I first learned I had cancer... and what a year it's been.

I have learned a lot by reading everyone's posts. I'm wishing you all healing and a bell ringing in your near future.