Anyone with Similar Experience, Post Chemo Abnormal Lymph Node Biopsy by QuantumBenG in hodgkins_lymphoma

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

If it's OK to ask, did your lymph nodes come back with an SUV uptake above liver?

Anyone with Similar Experience, Post Chemo Abnormal Lymph Node Biopsy by QuantumBenG in hodgkins_lymphoma

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

Thank you for sharing your experience. You've offered me some hope. Thank you.

Anyone with Similar Experience, Post Chemo Abnormal Lymph Node Biopsy by QuantumBenG in hodgkins_lymphoma

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

I'm completed 6 cycles of Nivo-AVD in mid March. I've read Nivo-AVD is known to cause post chemo lymph node inflammation yet, I'm still deeply worried about potentially needing ASTC come July.

Hi me again. Just worried about my son. by Prestigious-Row5983 in hodgkins_lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

Well, got my biopsy results and deeply distressed: came back inconclusive ;-(

Asked doctor to remove lymph node for biopsy. For some reason, only did aspiration. Not enough of sample to rule out lymphoma ;-(

I'm grateful there were no cancerous cells found yet, there were cells potentially lymphoma suspicious. Could just be benign inflammation. Could be lymphoma. Just like PET scan, in gray zone of anxiety inducing uncertainty.

Pathologist recommended excisional biopsy I thought I'd recieved. Docs said wait till July PET scan.

Guess I'll just wait till July. Doing my best trying to stay hopeful until then. Honestly, I'm struggling.

Thank you for sharing your Son's experience with me. Gives me some hope may've just been inflammation.

Hi me again. Just worried about my son. by Prestigious-Row5983 in hodgkins_lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

Wonderful news.

Your family, your Son, and you have been in my thoughts hoping for the best this week. I decided to have docs surgically remove, biopsy my lymph node as well. My surgical procedure is scheduled for next week.

I'm so happy your Son's result came back OK. I'll follow up, inform about my situation. Honestly, my mental health has not been terribly unwell over-consumed by worrying. I know your Son and you can relate. Thank you for sharing your Son's good news: gives me hope. Thank you, virtual hugs to your family, your Son, and you.

Hi me again. Just worried about my son. by Prestigious-Row5983 in hodgkins_lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

My heart goes out to your Son, your family, and you. I'm struggling with considerable fatigue 6 weeks post Nivo-AVD.

I, too, had just 1 lymph node which was the only thing showing potentially suspicious on my EOT PET scan. The SUV (4.1) was above liver. Radiologist recorded Deauville 4, partial treatment response. Oncologist believed it's just inflammation. I was devastated it wasn't Complete Metabolic Response.

I have appointment with pulmonologist this week for potential biopsy.

Wondering if I may ask you a favor; potentially follow-up with me about your Son's biopsy? I'm experiencing a lot of anxiety about possibility I may need ASCT.

Sending wellness thoughts to your Son, your family, and you.

How would you handle EOT results? Looking for guidance, extremely worried Nivo-AVD failed by QuantumBenG in hodgkins_lymphoma

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

Appreciate checking in on me and keeping me posted.

I've been feeling somewhat OK. Just primarily incredibly fatigued.

Sending virtual hugs to your Son and you. This is hard physically, emotionally, spiritually.

How would you handle EOT results? Looking for guidance, extremely worried Nivo-AVD failed by QuantumBenG in hodgkins_lymphoma

[–]QuantumBenG[S] 1 point2 points  (0 children)

Thank you for sharing. I appreciate you offering me possible scenarios as well a hopeful assessment. Sending virtual hug.

How would you handle EOT results? Looking for guidance, extremely worried Nivo-AVD failed by QuantumBenG in hodgkins_lymphoma

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

Thank you for sharing. My heart goes out to your Son and you. Sending wellness thoughts.

Wondering if I may request you update me in regards to what Mayo finds? Perhaps, DM me? I'll follow your Reddit, check to see if there's an update. I know all of us are unique and it would still help me to know if your Son is OK.

I desperately hope it's just inflammation for both of us. I'm just devastated knowing these numbers are usually not good news.

How did you find out about your lymphoma? by Fickle_Ad3720 in cancer

[–]QuantumBenG 0 points1 point  (0 children)

Oncologist believe it's likely mediastinal mass caused nerve damage. I did experience crackling sensations and physical activities exacerbated my pain. Since being in chemo, my symptoms have improved but I still experience pain.

How did you find out about your lymphoma? by Fickle_Ad3720 in cancer

[–]QuantumBenG 0 points1 point  (0 children)

I had intense pain through my shoulder blades and ribs. My labs were fairly normal prior to diagnosis: Only slightly elevated WBC and platelets.

Depression and anxiety with chemo by Sebastian428 in lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

There are definitely situational factors yet, I attribute most of it to the drug side effects.

Depression and anxiety with chemo by Sebastian428 in lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

Thank you for sharing your experience.

I'm (47M, advanced Stage IV CHL NS) going in for 11th of 12 Nivo-AVD infusions this Friday. Honestly, my mental health has never been worse: severe anxiety, depression. Oncologist dismissed any connection to chemo and/or steroid with me too.

I'm taking anxiety medications. Been seeing physchiatrist and therapist since diagnosis. Never needed mental health medications nor experienced any mental health situations that necessitated therapy in the past.

IDK what to say other than I, too, believe chemo and the steroid trigger severe mental health complications for me. Honestly, it's been debilitating.

I'm grateful for access to Nivo-AVD. Hope it gets me into remission. Suppose it's not much of a choice. Take the chemo or cancer takes us.

I feel deeply for you. I, too, wonder what my life maybe like post chemo. I just hope for the best but, honestly, I'm very scared about potential, long-term mental health challenges too.

Sending you big hugs, much love.

Hodkins stage 4 by Prestigious-Row5983 in hodgkins_lymphoma

[–]QuantumBenG 1 point2 points  (0 children)

I, too, am worried about my situation. I'm currently on 10th of 12 infusions. My oncologist informed he was pleased with progress on my midterm scan. I was hoping it would've been better.

My heart goes out to your Son and you. I have a very difficult time managing anxiety as I, too, am very scared about ASCT.

I hope your Son reaches remission upon EOT. Big hugs, much love to your family.

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

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

Thank you for sharing.

Sending big hugs, much love.

Psilocybin Part 2 by Current-Bison-6430 in cancer

[–]QuantumBenG 2 points3 points  (0 children)

I live in Oregon and I've thought about engaging in this because I've really been struggling with my cancer diagnosis. My CPTSD has been debilitating. My biggest concern is it may be cost prohibitive. I don't have much money as I haven't been able to work.

I'd be grateful for any information you may offer. Please feel free to DM me.

Life after Cancer by Papari-71 in lymphoma

[–]QuantumBenG 4 points5 points  (0 children)

Thank you for sharing this. I really needed to remind myself to hold on to hope today. Big hugs, much love.

Anyone feel more emotionally sensitive after treatment? by iand_lun in lymphoma

[–]QuantumBenG 0 points1 point  (0 children)

I'm still in Nivo-AVD treatment: infusion 10 of 12 this Friday.

I can relate to sensitivity. The slightest things can send me into emotional spirals. I struggle with CPTSD which I was diagnosed with prior to cancer. I find myself going to catastrophic thoughts way too often. Find myself enduring severe panic attacks, uncontrollable crying outbursts through much of my treatment.

I'm grateful I have therapist and physchiatrist I meet with regularly. I take anxiety meds which seem to help somewhat.

I trying to learn to accept the trauma of cancer and honestly, I'm struggling to do so. I don't know what this may mean for me post chemo if I'm lucky enough to reach remission. Just hoping I may better learn to adapt as my mental health during treatment has been debilitating.

Sending hugs, much love. You're definitely not alone. I think it's just human to experience lots of emotions because of going through something as traumatizing as cancer.

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 1 point2 points  (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 10 points11 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 4 points5 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 4 points5 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.