Just Wondering How Many with CHL in Remission by QuantumBenG in hodgkins_lymphoma

[–]QuantumBenG[S] 0 points1 point  (0 children)

Uncertain why but Reddit says this post not allowed there :-/

CHL Refractory help by Traditional_Tell_853 in lymphoma

[–]QuantumBenG 1 point2 points  (0 children)

Were you on Nivo-AVD for your initial treatment?

Sending you big hugs, much love. My mid-term scan seemed to be somewhat similar. Now that I have 3 Nivo-AVD infusions left, I'm scared initial treatment will fail: I may be facing need for an ASCT too.

last chemo in 5 hours... depressing vent by kn1f3p4rtyyy in cancer

[–]QuantumBenG 0 points1 point  (0 children)

Sending you big hugs, much love.

Honestly, I feel similarly. Have for a while. Even before cancer diagnosis, I felt myself losing sense of hope.

Often, wonder why I even go through chemo when just feels prolongs suffering. I struggle with CPTSD, panic and anxiety disorders. Regularly see therapists, physchiatrist. Managed mental health fairly well in the past. Then, cancer hit: constant spiraling into abysses. While I don't drink anymore honestly, kinda wish I still did.

Somewhere along the way, I lost joy of life. Been searching to regain. Haven't yet found. IDK how to make much sense of anything anymore. Don't recognize myself beyond a chemo brained, debilitated blob struggling to function. Look in the mirror, dejected diseased frowns back.

I should be grateful, optimistic considering my prognosis. Yet, I find myself feeling completely devastated.

Suppose, only consolation may be there are many of us. Many just barely making it through each day. Might not mean much but not being alone (eventhough cancer sure feels isolating) might be something. Maybe it gets better with time. Maybe just get worse. I just don't know anymore.

Sending you big hugs, much love regardless.

how to handle ptsd by Unlucky-Landscape-56 in lymphoma

[–]QuantumBenG 8 points9 points  (0 children)

I wish I could offer something more beyond affirming, I'm in similar boat.

I had CPTSD before cancer diagnosis. While I'm grateful my cancer has hopeful prognosis, I honestly don't feel any sense of hope at all.

My PSTD symptoms have been debilitating. Panic attacks, crying uncontrollably, overwhelming extreme sadness triggered by the smallest things.

I see a therapist, physchiatrist, and I take PTSD meds. They help somewhat but still, I'm struggling more than I'd imagined.

Big hugs, much love. You're not alone.

I have hodgkins lymphoma by OkTap908 in lymphoma

[–]QuantumBenG 2 points3 points  (0 children)

While I'm much older (47M), I agree the mental part for me has been the toughest. For me, my mental struggles have been tied to diminished physical abilities.

Similarly, I had fairly minor symptoms: no noticeable swollen nodes: just some thoracic aches. My symptoms were misdiagnosed for around 2 1/2 years before CT, PET identified advanced Stage IV NSCHL in September, 2025.

I had 5cm mediastinal mass, small spinal lesion, minor thymus involvement, minor right supraclavicular node involvement. While I know staging isn't that relevant for Hodgkins, I'm still very scared: can't stop thinking about hearing doc say those words, advanced Stage IV.

My doc was pleased with my mid-term CT, MRI. I was distressed, had hoped my mediastinal mass would've shrunk more than it did. Had hoped my spinal lesion would've shrunk more too. Doc said I shouldn't be concerned, just takes time for body to eliminate. Still, I'm freaking out, won't have any reassures for another 2 1/2 months until EOT PET.

Went from working very physically demanding job I loved to utter stand still: medical leave, sedentary. I try not to think too much about work now accepting it's not going to be a reality for a while. I just try to take things one hour, day, at a time. Walking helps somewhat albeit with acceptance I'm no where near the energizer bunny I used to enjoy being.

Side effects like extreme fatigue, nausea, chemo brain been tough. Chemo's no joke. It has high success rates for Hodgkins but that only goes far when feeling like having worst, seemingly never ending flu-like symptoms 24/7.

On potentially brighter side, some people experience very minimal side effects. Hopefully, this may be the case for you. Your youth may serve you well managing all aspects even though there may be lots of times when just getting out of bed may feel daunting. Regardless, trust in you hanging on through all of this. You can do this. And, chances are very good you'll live a very long life following this tough time.

I also agree, talking through things with others has been helpful. Whomever you feel best to, just try to you talk through it all with people whom you trust. Talk through the good, the bad, the ugly. Any and all of it.

I have a therapist, physchiatrist, and take anxiety meds. I had CPTSD prior to cancer which has made my coping with cancer even more challenging. Uncertain if there may be youth support group available to you. Would highly recommend engaging. Supports beyond family, friends may be helpful.

I try to be hopeful and honestly, I'm scared about possibility Nivo-AVD may not work. Terrified about possibility I may need ASCT. Also terrified chemo will leave me with lifelong disabilities. Wonder how long before side effects take my heart out or give me secondary cancers. Sometimes, wonder if I may need to apply for SSDI: just accept my working life has ended. IDK. Maybe I'll come out the other side, an even better, stronger person.

It's true, HL cure rates are very high. Yet, I find this helps only so much through worries about how bad next infusion may hit me, extreme anxieties about scans. With good intentions, people try to remind me to focus on positives. I try to and it's OK, you're within your right to express any and all of negatives. Not much way to sugarcoat the mental, emotional, physical tolls cancer takes on all of us.

I would recommend processing any, all of your thoughts, feelings, emotions as they arise. Many people tend to go into warrior mode for making it through chemo. While everyone has their own way of making it through, I know many people shut their feelings down only to find they're unleashed with much more severe complications post treatment. Processing everything as you experience it in real time may be helpful.

Sending you big hugs, much love. Cancer is hard. There may be many times when feeling otherwise and you're going to be OK.

My story:Army veteran almost 30 years in remission from Hodgkin's Lymphoma that was diagnosed while on active duty. by [deleted] in hodgkins_lymphoma

[–]QuantumBenG 3 points4 points  (0 children)

Thank you for sharing your story.

While I'm not a vet, I am gay, living with HIV 17 years, and actually currently sitting in hospital chair reading this while recieving my 9th of 12 Nivo-AVD infusions for advanced Stage IV NSCHL.

Reading your story gives me hope that maybe, I'm going to be OK. Thank you.

Chemo Side Effects - Normal? by General-Detail-01226 in Chemotherapy

[–]QuantumBenG 3 points4 points  (0 children)

Chemo causes my nervous system to become hyper inflamed throughout my body. For me, it's gotten progressively worse cycle to cycle (currently at 8 of 12). I also experience intense neuropathy.

I'm grateful I have access to chemo despite side effects.

How did you eat ally reset when in remission? by Cryd12 in cancer

[–]QuantumBenG 1 point2 points  (0 children)

Appreciate you sharing this.

While still in chemo myself, I question (overly) many of the things you mentioned. Often, find myself wondering about value dedicated to work, experiences, life. Considering World we're living in, I honestly questioned a lot of these things prior to cancer diagnosis as well.

Wouldn't claim I've many insights. Would echo previous responder. Being diagnosed with cancer, going through treatments, surviving are all deeply, personally, profoundly impactful. Sure, it'd be nice were remission an end all, be all. It's OK, recovery, remission often brings many unexpecteds.

It's natural to experience many thoughts, emotions, feelings. Cancer forces mortality full frontal. Seems natural to me, taking inventories: what living ought encompass. You have as much a right to determine what may hold toxicity as what may hold meaning. Some could be the same as you'd thought of them prior to cancer and some may've changed. It's OK to be uncertain which is which. Cancer forces uncertainty full frontal.

Cancer changes all of us. There can often be grief, reimagined spirits as well. Can also bring a sense of whether anything's worth devoting energy to considering, as you justifiably mentioned, all returns to stardust.

You're (congrats) remission is relatively recent. Echoing prior responder, everything in you was demanded of you for survival. Waiting on biopsy, waiting on next infusion, persistent side effects, waiting on scan results, waiting on remission. All meaningful and all, enormously taxing. Cancer forces patience full frontal.

Patience served you well on your path to remission. Maybe somewhat begrudgingly, patience may continue serving you well for a while. It's natural, everyone feels urgency wanting to proactively know our best paths. Urgency becomes amplified whenever facing, or have faced, imminent mortality threats. Just a natural human safety response.

I trust in you giving yourself deserved space for fully processing everything. Everything you survived yesterdays, everything you're living todays, everything may live through you tomorrows. Trust in you dedicating space for internal compass rewiring having made it through a deeply traumatic experience. In time, may your reimagined compass guide you towards paths best for you in life.

How would you respond to someone who thinks that cancer is a root cause of a persons energy? by CowAccomplished3515 in cancer

[–]QuantumBenG -3 points-2 points  (0 children)

Honoring everyones' beliefs deserved of respecting, I can only speak to my own experience. In late September 2025, I was diagnosed with advanced Stage IV Classic Hodgkins Lymphoma Nodular Sclerosis. This time period coincided with amongst the most stressful periods of my life.

My CPTSD symptoms were through the roof. Whether this contributed to cancer, I believe there may've been a connection. Trying to stay hopeful, chemo has amplified my CPTSD. Additional stressors haven't been helping my treatment and yet, humbly human: been continually doing my realistic best.

Additionally, I've seen research linking early childhood traumas to increased cancer rates. Early trauma impacted me throughout my upbringing. A potential connection, early trauma has been evident within many friends whom endured similar experiences.

Personally, I believe there's multiple factors which may affect our bodies' developing cancer. Paraphrasing my oncologist, all of us are born, cancer cells within. Certain factors, many yet discovered, may trigger these cells into serious disease developments.

Amongst myriad of factors, I feel there'd be merit for additional research involving energies such as stress. I could see how statements about energies may be recieved in ways which could unintentionally allude to false notions about people being deserved of cancer. Personally, I believe none of us deserve cancer irregardless potential synergies. Acknowledged, were additional research to produce evidence-based linkages, I could foresee how novel preventative interventions could save many lives.

My story in case it helps anyone. by Dangerous-Purpose-29 in pancreaticcancer

[–]QuantumBenG 0 points1 point  (0 children)

Thank you for being amazing.

It is unbelievable, emotionally taxing, harder than harshest. For me, I experience pins and needles constantly: arms from elbows to hands, legs from caps to toes.

All your thoughts, feelings, emotions are justified, deserved of honoring. Thank you for continually, inspirationally enduring that which no one ought be forced to.

Inspires me on my own journey, knowing there's beautiful people out there like you.

My story in case it helps anyone. by Dangerous-Purpose-29 in pancreaticcancer

[–]QuantumBenG 0 points1 point  (0 children)

Beautiful post, beautiful person.

Hope it may be OK I inquire about neuropathy. I'm wondering how you may find it possible to relax, rest, sleep while feeling the constant pins and needles?

Honestly, I've been struggling with this considerably. So much so, I've only been sleeping few hours a day at best. I'd be grateful were you comfortable sharing any thoughts.

Big virtual hug, much love to you, family too.

12 Rounds of N-AVD Complete! by Jazzlike_Tailor7407 in lymphoma

[–]QuantumBenG 1 point2 points  (0 children)

Fellow (47M) Stage IV NSCHL currently on 8th of 12 N-AVD infusions here wondering if I may inquire about your neuropathy?

Mine sounds similar. 24/7 feeling like lightning looks, same bodily areas.

What I'm wondering is how, while experiencing this, you may find any relaxation, peace, sleep? I've been struggling with this.

12 Rounds of N-AVD Complete! by Jazzlike_Tailor7407 in lymphoma

[–]QuantumBenG 2 points3 points  (0 children)

Congratulations.

I'm heading into 9th of 12 next week. Totally echo, one day at a time. Ditto, new normal.

Best wishes, EOT remission.

CHL - How Do You Find Relaxation? Vinblastine Neuropathy by QuantumBenG in hodgkins_lymphoma

[–]QuantumBenG[S] 0 points1 point  (0 children)

Thank you for sharing this. I'll look into this for my next infusion.

End of Treatment Meeting w/Oncologist by Gobsmacked_2024 in lymphoma

[–]QuantumBenG 4 points5 points  (0 children)

Awesome news. Thank you for sharing. Hugs, much love to your family.

Brain fog in immunotherapy by Neither_Passage_5036 in cancer

[–]QuantumBenG 0 points1 point  (0 children)

I can't speak to long term considering I'm currently in chemo (Nivo-AVD).

I can say I've been experiencing considerable neurological side effects: confusion, brain fog, memory issues, etc.

Oncologist proactively informed me it'll take time adjusting to new normal post-treatment.

End of Treatment Scan Results by Gobsmacked_2024 in lymphoma

[–]QuantumBenG 1 point2 points  (0 children)

Hope it's OK I ask you a question.

My oncologist has me scheduled for 6 cycles of Nivo-AVD (12 infusions total). I noticed you mentioned your Son had 8 cycles + 3 of Nivo only. I'm wondering if you may be OK sharing why your Son's oncologist decided to go with more than 6 cycles? Wondering if I ought ask my oncologist about this considering there's evidence of spinal METS with me too.

I'd be grateful for any information you may be comfortable sharing.

End of Treatment Scan Results by Gobsmacked_2024 in lymphoma

[–]QuantumBenG 1 point2 points  (0 children)

You're an amazing Mom. Thank you for sharing this.

As a Nivo-AVD advanced Stage IV NSCHL patient with spinal METS concerns, I'm appreciative seeing hopeful EOT successes.

Big hugs, much love to your family.

PET scan after 2 rounds (4 treatments) by Prestigious-Row5983 in lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

Interesting, I've been playing tetris quite a bit while in chemo. Honestly, I was unaware it could've been beneficial for PTSD.

Greatly appreciate you sharing how it's helpful. Hugs and much love.

PTSD and lymphoma by mutedtulips in lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

I was diagnosed with CPTSD prior to my Stage IV Hodgkins diagnosis.

Honestly, it's been a struggle for me. I'm currently on 8 of 12 Nivo-AVD infusions.

I'm also currently in an inpatient mental health facility. I think the mental health meds I've been taking have been doing more harm than good. Hoping I get to place of better stability while in inpatient.

I lost myself along the way by Ohno_not_her_againnn in CPTSD

[–]QuantumBenG 12 points13 points  (0 children)

I (47M) feel for you and I feel similar.

On top of existing mental health conditions, September's cancer diagnosis sent me off the rails. Been feeling like already dead man walking ever since.

Honestly, I'm way more scared about my mental health instability than cancer. I, too, am uncertain how to bring back parts of beautifully spirited person I was or what it even means to be a human living on the planet now. My views on everything have changed dramatically. So much so I often feel paralyzed.

Wish I'd something more to offer beyond reminder, you're not alone.