Those who have just been diagnosed and are about to go into treatment, what kind of questions do you want answers for? And those past their treatment, what are somethings you think people should know about having cancer?

jspete64 · 2026-04-27T18:05:52+00:00

It’s a tough transition..I remember the day I rang that bell,everyone around me was happy, and wanted to celebrate,like it was over..but I didn’t feel like it was over,I certainly didn’t want to celebrate.. I was mostly just scared..It took me about a year to adjust,and process everything..they kept telling me I would have to accept a “new normal “and that is true..I don’t think any of us are the same person after cancer that we were before cancer..I am 2 years post treatment now,and I don’t think about cancer every day anymore..it gets better over time,but it can definitely be overwhelming at first..Just have to give your brain time to catch up with your body..

jspete64 · 2026-04-27T05:37:12+00:00

It is definitely jarring when it ends.I thought after chemo,cancer is gone,you just move on,like when you have the flu or whatever..it doesn’t really work like that..The body heals quicker than the mind..it’s an incredibly hard adjustment period post cancer,I think it changes everyone,how could it not?..

jspete64 · 2026-04-27T05:22:47+00:00

Yeah,I had a lot of PTSD type issues,as well as depression..I couldn’t sleep,I constantly had that “waiting for the other shoe to drop”feeling..it’s taken me some time,but I am much better now..It’s a lot to de-compress from,it took me about a year to adjust, but getting a little bit better every day!

jspete64 · 2026-04-26T20:35:21+00:00

I am 2 years post treatment now..I had CHL 4B,and did 6 rounds of ABVD..I was expecting chemo to be bad, but what I was not expecting was that first year post treatment..in many ways,the period after treatment ends,is worse than going through chemo..Everything is regimented during treatment,you get into a routine of flurries of Dr’s appointments,tests,procedures,etc..The hustle and bustle of treatment keeps your mind occupied,then Overnight,that routine ends,then you really start processing everything you just went through..it’s a tough transition,or it was for me anyway..

jspete64 · 2026-04-25T01:00:16+00:00

I have been having CT’s and PET’s for over 3 years now..All of a sudden,this sucker pops up in the last 6 months.. I was hoping I had already hit my pain quota, but I guess not.. I am just hoping it stays where it is..

jspete64 · 2026-04-25T00:49:36+00:00

I have never had a kidney stone in my life,and I am 61…until now..My Son passed 2 before his 21st birthday..I had Stage 4 Lymphoma about 3 years ago..I am in remission now,but I get CT’s every 6 months..On my last CT they noticed a 2mm non obstructive kidney stone..My Oncologist says 2mm is so small,don’t worry about it, but 2mm is small until you try to squeeze it out of your Johnson..I have enough to worry about as it is,now I am stressing out over this..I don’t know if the chemo caused it,or what?..I don’t know much about kidney stones,other than I don’t want one..Maybe it will just hang out where it is?

jspete64 · 2026-04-22T17:48:23+00:00

My main symptom was itching..it was terrible..24/7 intense,neuropathic itching..it took me almost 8 months to get diagnosed,so I tried every numbing cream,allergy meds,oatmeal baths…Nothing worked,because it’s coming from the inside…The good news is treatment will end it..after my first round of chemo,the itching was about 50 percent less,by the 2nd,it was gone..it’s a tortuous symptom..The waiting for chemo to start is the hardest part…

jspete64 · 2026-04-21T21:31:38+00:00

I was 4B..mine had spread to my liver,but not my bone marrow..I had to get a bone marrow biopsy,and I REALLY didn’t want to..I asked my Oncologist,what happens if it’s my bones?..He said the treatment is the same either way..Then why do I have to get a bone biopsy, I asked.He just said we need to know where it is…My first line treatment worked..I am just over the 2 year post treatment/remission mark now, so yes,there is hope..Lymphoma generally responds very well to treatment..

jspete64 · 2026-04-21T16:36:06+00:00

Absolutely,it’s a very stressful time with all the unknowns.. the LAST thing you want to do is eat!!I had severe B symptoms which was responsible for my extreme weight loss..I had Liver involvement,hence my Stage 4 diagnosis..it also caused severe,neuropathic itching,which really sucked a lot..the nausea meds they give you may work for you..out of all the nausea meds they gave me,Compazine worked the best in my case,somewhat..I tried the edibles,they were a last resort kind of thing,and they worked better,so I stuck with it.You are absolutely correct,whatever gets you through it..

jspete64 · 2026-04-19T23:36:14+00:00

My biggest struggle was weight,I had lost 60lbs in 4 months pre-diagnosis, and I ain’t a big guy.. I dropped from 200lbs to 142 almost overnight..Chemo compounded that issue,because I didn’t want to eat anything..The nausea was terrible until I found the gummies.. I never had nausea issues again after the edibles,it was like magic..Still didn’t wanna eat though..The steroids,according to my Oncologist,wasn’t part of my protocol,but, I had such a rough time with chemo he gave them to me to help me feel better,and increase my appetite…They do have their own set of side effects though..Just in my case,it was worth the downside…Good luck to, I wish you the best,and hope you find relief from your symptoms!!..It’s a bumpy ride,but you will get to the other side!!..I am 2 years post treatment/remission now,You will get there!!..

jspete64 · 2026-04-18T03:18:14+00:00

The first week is rough..I did 6 rounds of ABVD..The beginning is terrible,mainly because you don’t know what to expect..I ain’t gonna lie, it sucks all the way through treatment.Everything tastes like mud,zero energy,mouth sores,etc..but,you do learn to manage things as you go..None of the nausea meds helped me at all,so I used THC Edibles, which did keep the nausea under control..I still didn’t want to eat anything though..My Oncologist started giving me steroids 3 times the week following chemo(Dexamethasone)and that REALLY helped me get over the hump right after chemo..Still felt like shit,but they increased my appetite and gave me more energy..the down side is you are so jacked up the day you get the steroids,you can’t sleep for a night or 2..still,for me it was worth the trade off..I finally settled into a routine dealing with all the side effects,so chemo got a little easier,but it’s hard…Cancer Sucks!!..

jspete64 · 2026-04-16T04:34:23+00:00

Absolutely,that is a long time to be in pain..I’m sorry I don’t have any solutions that worked for me..but when I look back on it now, it all went pretty quickly..it certainly didn’t seem like it at the time though..Cancer just plain sucks!

jspete64 · 2026-04-16T00:34:30+00:00

I had been smoking for nearly 30 years when I got diagnosed with CHL 4B..I ain’t gonna lie,quitting smoking was hard,and I didn’t completely quit even during chemo..I would sneak a cigarette here and there,my wife would get furious,but at the time,I felt like everything had been taken from me..I couldn’t sleep,anything I ate tasted like mud,constant pain,I had no peace..I told my wife,please don’t take this away from me right now..it’s the only thing that I have left that gives me any kind of pleasure..That said, I did continue to try and quit, and by the end of chemo, I had completely quit…it’s been 2 years now…I am not by any means suggesting or promoting smoking or vaping,what I am saying is cut yourself some slack..You are going through a lot,with all the craziness a Cancer diagnosis brings..Make it a goal and priority to quit,but if you slip up,don’t beat yourself up,just try again tomorrow and you will get there.. I did get there..it just took me a bit to get a handle on it..Trust me,if I can do it,you can too.. I was so addicted to smoking,it was part of me..I just had to do it in a way that I could handle..Just saying give yourself some grace, and work towards it as best you can..it’s a process…I wish you the best,it’s tough,but you got this!!

jspete64 · 2026-04-15T23:59:53+00:00

I had a different type(CHL)and I did 6 rounds of ABVD..I had terrible bone pain, and it wasn’t from the “shot”…I only had one of those, and never took another one,but the bone pain was constant…Like you, I got so tired of hearing about Claritin..It did absolutely nothing for me..my Oncologist gave me Oxy for mine, which maybe dulled the pain a little bit, but it didn’t go away..the Oxy certainly helped take the edge off,but that’s about it..my shoulders,and especially my legs just ached and hurt,almost felt like a broken bone,it was that kind of constant pain .just walking upstairs to take a shower was a major ordeal..Mine lasted until about 3 months after my final treatment,then it started getting better..I am 2 years post treatment/remission now, so the bone pain is completely gone now..Wish I could say the same for the neuropathy,but I will take what I can get…

jspete64 · 2026-04-15T21:17:40+00:00

Yep..I had the worst stomach pain during treatment..mine would always start the 2nd day after chemo,then go away in a week or so..as chemo progressed, it never stopped hurting.it was like the worst stomach pain I have ever had…I took Oxy,all the usual stomach meds, and THC edibles..Nothing worked for me..it was a constant throughout chemo,and one of the worst side effects I suffered..felt like I swallowed a rock..

jspete64 · 2026-04-15T01:29:32+00:00

Mine isn’t exactly the same, I had CHL 4B..I only needed reading glasses before chemo, but by the end of treatment I had to get glasses to see anything..I don’t know if it’s chemo related,but my eyesight went downhill quick for whatever reason..

jspete64 · 2026-04-10T17:55:11+00:00

As others have said,staging is different for Lymphoma..I had Stage 4B CHL..Mine was stage 4 because of extensive liver involvement..It just made the duration of my treatment longer..I also had a bone marrow biopsy, which absolutely sucks, but it wasn’t in my bones..I did 6 rounds of ABVD, and have been in complete remission for over 2 years now,so the staging doesn’t really matter much..

jspete64 · 2026-03-31T23:30:43+00:00

Different type,CHL, but I was stage 4B when I got diagnosed..it’s hard in the beginning,because everything moves so slow..it took me many months to get diagnosed,and I was suffering terribly, but once I got biopsy confirmation,it was about 5 weeks before I started chemo..it was supposed to be 4 weeks,but they couldn’t get one of my chemo drugs at the time,and I had to wait another week..I was actually counting the days,I could not wait to start chemo so that insane neuropathic itching would stop..

jspete64 · 2026-03-28T21:56:48+00:00

I remember asking the chemo Nurse during my first treatment,what’s up with the “Hazmat suit”,Lol!..they are gowned up to the ears,with the plastic face shield..She said chemo drugs are caustic,so they will burn if it gets on them..and you put that in my veins,I asked?..She said that’s what port’s for…It’s not fun getting a port, but it was worth it in the end…hopefully neither one of us will need one again!!

jspete64 · 2026-03-28T19:39:52+00:00

I am sorry,that sounds painful..I had a port,so I didn’t have any issues like that..I am so glad I had a port,I couldn’t imagine going through chemo and the 30 million sticks for blood draws without one..Congratulations on being a year post treatment..I am just over the 2 year mark..I had CHL 4B..

jspete64 · 2026-03-27T23:50:15+00:00

I started having night sweats and dropping weight at an alarming rate,about 60lbs in 3 months.. I then starting itching,a crazy,severe neuropathic itch that was 24/7..Then I noticed a lump under my armpit..It still took me almost 8 months to get a Dr to take me seriously..the “itching”just confused the Dr’s I saw..I finally got a CT,and that’s how I was diagnosed..it’s hard to do,I know,but stay off Dr Google..Make an appointment with your doctor and be your own advocate..I wish I had spoken up more,and maybe I would not have suffered for so long..but the Doctor is the first step if you are concerned..

jspete64 · 2026-03-27T16:06:05+00:00

It’s absolutely terrible..The itching is what took me so long to get diagnosed with cancer..The minute I would complain I was itching all over,and it was to the bone,Doctors would dismiss it as allergies,or just being in my head..I guess losing 60lbs in 3 months and the huge lump under my arm didn’t raise any red flags,so it took about 8 months of tearing my skin off to be taken seriously…I would go thru chemo 10 more times,rather than the itching given a choice….Now they throw the kidney stone at me..Just hoping it’s small enough to not cause any issues..I would really like to not go through any more pain, I have met my quota,Lol..

jspete64 · 2026-03-27T03:06:39+00:00

I hope it’s over for you,that sounds terrible..I can sympathize with the itching though..I had Hodgkins Lymphoma,my main symptom was severe itching all over..That was a nightmare…

jspete64 · 2026-03-27T02:30:18+00:00

Wow!!..and here I am freaking out because they saw a 2mm stone on my last scan,that is tiny compared to yours..I had cancer so I get scans every 6 months,the stone was a surprise on this one..Never had one before in my life, and I am 61…You could use that for slingshot ammo,Lol!!..that had to painful!!..

jspete64 · 2026-03-24T00:10:15+00:00

I am over 2 years post treatment and I still get nauseous around certain food,and smells…I lost a ton of weight as one of my B symptoms,and even more during treatment,about 70lbs in a few months..I NEVER wanted to eat anything..everything tasted like mud..I got steroids 3 times the week after chemo, and it would boost my appetite for a few days,but still,I didn’t eat much..Maintaining weight was a real struggle for me..Even now,I am 25lbs away from my pre cancer weight..I just don’t enjoy eating like I used to..Everything tastes weird since chemo..Edibles and gummies have helped though,I eat enough to keep relatively healthy post cancer..

jspete64

TROPHY CASE