Has anyone else here had this reaction?

I finished treatment ~6 months ago for cHL. During my first Bleomycin infusion I felt itchy and when I got home a couple hours later my torso was covered in red stripes, these faded to brown and then more appeared with every bleomycin dose. I had to Google my symptoms and then feed back to my nurses as they hadn’t come across it in a patient before.

I had a routine checkup recently where I brought it up to my consultant hoping to know more/ know if and when the marks on my skin should disappear but didn’t get any answers, just “yeah…I’ve not really seen [that reaction] in patients, I think you’re the first”. The literature I found online suggests it usually clears up within 6 months which hasn’t been the case for me so was disappointed by my doctor’s ’shoulder shrug’ answer. It also says there’s a 8-20% incidence rate so I would have expected my consultant to have seen atleast a few cases before given that bleomycin is a common HL chemo drug… ?(apparently more likely with higher cumulative doses so there are variations between countries based on treatment protocols).

Anyone here had this and can pass on knowledge; what does it mean for me? Will it go away/when/how? Are there any online resources-MacMillan etc warned me about ‘dry skin’ and ‘mouth ulcers’ but never this! Having to rely on case studies in medical journals isn’t ideal as it’s hardly plain English…

Hi there! Has anyone found a way to get rid of the port scar or tried to hide with a tattoo?

I’m getting my port on Wednesday, I’ve noticed my anxiety getting worse with each passing day since Saturday. I have gone for walks, drank saffron tea, tired to keep busy. I just have a pit in my stomach and the feeling of a lump in my throat.

I can’t seem to shake my anxiety. Anytime I have an appointment I get hit. Did anyone take anxiety medication during treatment?

I will find out the results of my PET and treatment plan Friday. I’m a nervous wreck. I just hate this all so much.

I’m trying to stay positive, I feel like I can mentally get in a good spot. But my nervous system is not in alignment.

Anyone else feel this way or have words of wisdom? I’m tired of snapping at my kids because I can’t manage myself.

Diagnosed in february with stage 4 Nodular Sclerosis Hodgkins Lymphoma, with a Deauville score of 5. Went through 6 cycles of BV-AVD chemo therapy. my mid treatment pet scan showed complete recovery in all areas with no uptake and Deauville score of 1.

Just had my 3rd PET scan 3 months post chemo. There was .6cm area of SUV uptake max 1 in my armpit (compared to 9.9 on my first scan) with a deauville score of 2. So i guess im still in remission? Still waiting on a appointment with my oncologist to discuss results.

however i noticed Chronic maxillary sinus disease was listed in the findings? Not sure what to expect from that. I have none of the listed symptoms

Hi,

I’m over two years clear of Hodgkin lymphoma - nodular sclerosis type.

I don’t think bruising was one of my initial symptoms. My initial symptoms were night sweats (that I incorrectly had to do with being post partum), itchy legs, and fluid around my lungs. To be fair, I was not looking for bruising initially so there might have bruises that I didn’t notice because I was busy being a new mom who was paying much attention to myself.

Today I noticed a big bruise on the back/inside of my thigh. It’s REALLY dark bruise. Is this a possible concern of relapse? I called my PCP to make an appointment just in case but haven’t reached out to my oncologist. I don’t want to look like I’m overreacting. It’s just really dark, and big, and I haven’t been hit in that area - especially not hard enough to cause a bruise like that. I would remember.

To be clear, I’m not panic or freaking out so please don’t say something along if the lines of “First, take a breath.” I’m just not wanting to bother my busy doctor or oncologist if it probably has nothing to do with possible relapse and I also tend to underplay issues (I could barely breathe for like 3 weeks before I finally went to the doctor for it lmao) so I don’t want to dismiss it if I should be concerned

To any males undergoing treatment, or completed it, and wonder of you'll be able to conceive children in the future, I can say it is possible! My wife and I just had baby number two just under twenty-two months after I finished AAVD. We didn't start trying until I was in remission for at least a year, but we didn't have any issues conceiving and the baby was born healthy! We had our concerns after my diagnosis and me having to preserve sperm, but we made it happen without any additional fertility methods. Checking sperm count, motility, etc. is important to find out if you might have any issues, but there's hope out there to grow your family. Good luck!

Hi guys! I'm 22F, PMBCL, and is currently in the hospital for my 7th and last ICE chemo. Now we encountered a problem because my bloodworks show a low hemoglobin count of 79. My previous one last chemo was 97 and I think it should atleast be 80 to be considered ready for chemo.

So my oncologist suggested that I get blood transfusion of 1 unit of blood. My mom wanted to discuss with me as she firmly believes that getting a blood transfusion will lead to other sorts of diseases on top of cancer. Now, she also says that she firmly believes that blood transfusion might pose some problems as much as it helps. But i think this is also because of her upbringing as partly Jehova's Witness. I told my doctor about this and he was considerate and gave me options. One is to have the blood transfusion and do chemo this week since I am lined in IV now already. Two is go home and have my chemo next weel so it will be delayed by a week so my bone marrow can rest according to my doctor.

Any opinions? I hope you guys can guve your two cents with open mind. I myself feel a bit off this chemo session and would want to opt for next week without transfusion because I also was not able to rest well the past days leading to this session. But in my head, it can also be just the chemo. But hopefully if my decision is to go home without transfusion, my hemoglobin hopefully settles witht the help of rest. Thansk guys

My wife has Hodgekin’s Lymphoma and has completed 1/12 treatments of Nivolumab-AVD. She is supposed to have her next infusion Monday.

She currently has a cold with mild symptoms. How would this potentially impact the infusion? Do any of you have any best practices when having a cold? What should I ask the doctor when we meet together prior to infusion?

I want to care for her as best I can and make sure we are looking out for anything concerning.

Hey gang. I guess I’m a member now. The last 2ish weeks have been a bit of a blur with phone calls and tests. My incisional biopsy was the 22nd, and I got the call on the 26th telling me that I have Classic Hodgkin’s Lymphoma.

Still processing a lot, but I think I’m doing okay right now. It was honestly a relief when I got an official diagnosis, instead of just “Cancer” that the original needle biopsy showed. I haven’t even met with my new Hematology Oncologist yet to discuss treatment, but already I can tell that my spouse is having a harder time with this than I am at the moment. Though I’m sure that will change or fluctuate over time. Maybe it’s because I work in healthcare and have a better idea of what to expect.

Idk. I’m not even sure how much I’ll post or comment, since I usually just lurk. But I’m here now.

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!

Sharing a good news here, been in this group for over 1.5yrs. Had a shock last aug with stage-4 lymphoma, had 6 rounds becoop-esc. Been in remission from jan this year, wife wanted a 3rd kid and couldnt wait 2yrs remission since we were getting old. First attempt and we hit jackpot. Will talk to my doc to see if its ok. Not sure about sperm n dna damage etc. Fingers crossed.

I'll be starting treatment in December and I was wondering how people treated social hangouts/grocery shopping/activities indoors while they were getting chemo. Did you try staying home as much as possible to avoid getting ill? Did you get grocery delivery instead of going out? Did you have friends over or visit others?

And what about bigger events like concerts or outdoor weddings? Was this a no-go, or did it depend on how you were doing?

I’ve been in remission for a year or so. They said the first two years has the highest likelihood of a return.

if i’m not feeling 100%, I start to worry it’s the lymphoma coming back.

How do yall handle it ?

I see my dr next month for a routine follow up. I might ask for a pet scan. just to help my mind.

My mum got diagnosed with stage 4 follicular lymphoma in late 2018, just curious about how long she can live with it for

My father was recently diagnosed with late stage 3-4 HGBL non germinal type and I was wondering if anyone has suggestions on what to ask about as they are planning to switch to DAR-EPOCH if it turns out it’s double or triple hit which I’m reading it’s likely.

On another note… it has been very unpleasant reading about Google prognosis.

Hey all! Just finished 2 cycles of pembro gvd and docs are saying remission with a score of 3. The thing that’s throwing me off is the radiologist wrote “at least a partial response”. My team of docs took my scan to the lymphoma board and everyone agreed to proceed to transplant. I just can’t stop thinking about the partial response part. Any advice ?

Hey, i have classic hodgkin lymphoma stage 4, recently i’ve started getting night sweats, i’m almost halfway though my treatment and never had them originally, could this signal a bigger problem? how do i deal with it?

I've been caretaking my 60 year-old mom for almost 2 years now, she has stage IIIBX DLBCL, so far she has received 6x R-CHOP, 3x GDP and 10x Radiotherapy sessions, so far there's a reduction of 76%, there's still a 44cm3 tumor, Radiotherapy was not very efficient, 4/5 lugano criterion. The doctor said yesterday that they're going to try one last chemotherapy (R-BAC), if that doesn't work they're going to send her to palliative care. We cried a lot yesterday and I really don't know what to do to make us feel better, I always try to confort her by showing her everything that can be done but at this point is very hard, it's just out of my hands, this really surpasses me, I'm only 17 so this is extremely hard for me.

After a wonderful THIRTEEN year remission (kidded myself into believing I was cured 🫤)...the "beast" is back. Having had huge doses of various aggressive chemo combos in past, i have been prescribed a very new (2 years out) biological drug Lunsumio.
Anyone here experienced it? I'm glad to avoid more chemo but the side effects of this sound scary as they mention "nervous system" and my chemo brain is bad enough.. (not to mention a 40% chance of toxic reaction that "may cause death" 😳).

Did you experience any eyesight problems after chemo? I did 6x Pola-R-CHP and now almost 2 months later I have some problems following screens in motion like watching a movie or sports. I was experiencing something similar a few days after the chemo, but it was always gone but itself.

Hi everyone,

I finished chemo in September. I just started noticing swelling in my feet and even a bit in my face under my eyes. My feet are getting swollen to the point I came home and my socks were cutting off the circulation. I didn’t notice likely because of my neuropathy. My doctor didn’t seem too concerned but I feel concerned this has never happened before. Any idea what could be going on? Worth getting a second opinion? Thanks for any advice!

I know I don't post much anymore, but I have thoughts and I don't want to dump them on my wife or family because it's difficult to understand if you haven't gone through it. Also, I don't want to make them stress or worry.

Anyway, I have a PET coming up. My last scan was in September of 2023. I wish I could say I'm not nervous, but I am. I have no symptoms, and life was going pretty good. There'd be days where I didn't think of my journey, but now with the PET coming up, things just go back into my head. I've made peace with everything, but sometimes I'd rather not think about it. To add to my scanxiety, they called to schedule the PET, but of course I missed the call. Tried calling back and had to leave a message.

I'm grateful for where I'm at health wise. I know there's many going through worse, but I guess it goes to show the struggle, even if small still continues. I hope I didn't ramble on too much. I hope everyone who celebrated Thanksgiving had a good one. Positive vibes to all.

50y M. Noticed in May a lump developing on my neck, right above some lymph nodes. Assumed it was swollen lymph nodes due to cold or flu or something, but when it didn't go away, began to have it checked out. 3 months later in Aug finally had an incisional biopsy and got the news, CHL.

Had a PET scan for staging, came back as stage 2A. The HCL is in a couple lymph node clusters, but all in that same spot within an inch or two of each other.

Started ABVD on Oct 25, and just had my 3rd session on Nov 25.

Two weeks after the first session, to my touch, the mass was at least 80 or 90% gone. Now, it is undetectable by touch to me or my Dr.

I was scheduled for 2 rounds of chemo, so I have the 4th session coming up on Dec 9, then they want me to go the following week for a PET scan to see how things look.

My question at this point would be, is this upcoming PET scan called the mid-stage scan? Typically, depending on the PET results, what can I expect after? Would there be more chemo, of if the scan looks great, would I be done with chemo?

I got so much good info from this sub and I'm thankful to you all that contributed. I went into chemo a lot more prepared due to all of you sharing your experiences (and on the cancer sub). I did do the ice trick for when the red devil is injected and I have had minimal issues with mouth sores.

Just wanted to share my experience so far and find out what I can expect to be looking at both short term, and long term. Thanks!

I live 5 hours away in Philly. My mother (75 years old) is in Virginia. She has lymphoma. Correct me if I'm explaining it wrong but she had 2 transfusions for Pack cells? That is what she told me. I'll make a long story short because it's dramatic (I have siblings [30s/40s]who are educated yet jobless and no work experience). I'll explain in another post. 😒 My mother is not eating just sipping on Ensure and water whenever. She is skin and bones. I just can't function knowing she is living like this with them. I didn't know it was this bad! She can't walk and she's wearing a diaper! I'm like wtf!!?? I was just there mid September before she started chemotherapy. I'm the cook in the family. I'm the oldest daughter #2 out of 4. My sister refuses to tell me any information about mom but took her cell phone away telling me she needs to rest. My brother is clueless even though he's there. Now I'm here! I'm going to try to get custody of my mother and guardianship. I have my own everything and resources I don't need nothing from my mother except to get better. I think there are better doctors in Philly. I'm begging her to eat. She's telling me to help my brother find a job because she can't keep giving him $500 for tutoring. I'm very emotional right because I love my mom. I apologize for my writing being all over the place. Food tastes bland and no appetite. What can I do? I told her she needs to puree her foods.

My sister made me this quilt like two weeks ago, it's drenched in blood. It's a white and light green quilt. My nightgown was soaked. Black velvet material, full of it. Needed new sheets. Needed to sponge bath the blood off myself.

Now it's 3:00am and I'm so wide awake it's nuts.

Hello! I am 24 and have relapsed hodgkins lymphoma.

I have done 3 rounds of DHAP treatment and am in stemcell collection process right now. They wanted minimum 2 million stemcells and after 3 days of collecting they only got 1,5. I'm bummed out because have never heard this happened to anyone else. Doctor said it can happen about 10-15% of cases. I have to do another collection next month. Any encouraging words? 🩷🫤

It's been one year since I had my power port put in and I have to say it was the most painful surgery I ever had. No amount of narcotics helped at all. I'm definitely feeling it today. My entire chest, right arm, and upper back are aching in remembrance. The body truly does remember.

I just want to say, don't push yourself too hard. Life can be tough, and old pains can return. But just remember, the pain is temporary and may not last forever. While preparing Thanksgiving dinner all day, I had to take a lot of breaks due to the pain & that was okay. It's okay to just be and exist. I hope everyone is having a good day and living life the best you can 💜

Hey just wanted to wish you all the best. Where ever you are in treatment and whatever you decided to do today- I wish you well today and even better times in the future. My husband and I and our kids normally host T-giving but couldn’t this year so one of my sisters and her fam took over and we were able to go. I really missed hosting but we all had a great time even though my WBC is so low that I had to eat in another room on my own - the rest of the time though I wore a mask and got to hang w everyone! If you feel like it, share your T-giving plans.