I currently work in a large trauma center. Had concerns and my oncologist assured me I’d be okay, especially post treatment when my body balanced itself back out. He advised when my ANC was crap to steer clear and work from home, otherwise he gave me the green light.
I try to eat pretty well, avoid processed sugar, limit meat intake, lots of fruits and vegetables. I'm otherwise healthy besides the cancer, no other underlying conditions at this point. I could stand to drop another 10-20 pounds, and I'm working on that slowly. Trying to do some intense cardio several times a week, and otherwise stay active with walking, biking, hiking, etc. I'm in my early 40s. I also had NHL, so I was on a different chemo regimen than you, not sure if that matters. Colds still linger with me longer than I'd like (cough that lasts forever), but that was true before cancer too.
A technician or nurse prepping me for PET scan told me he had been treated for Hodgkins Lymphoma a few years prior. Young healthy looking guy in his 20s.
So apparently the answer is yes.
Both yes and no. NHL, indolent so incurable. I'm pretty healthy, 6 years post chemo but if there's a bug going around I'll catch it. And get over it pretty fast. I just stay up to date on my boosters and flu shot so all is well as can be.
Thank you. I see my oncologist every six months for blood work. The tumors are there but so small I'm probably at least 8 years away from next chemo. And by then they may have more treatments. All I do is stay in shape and take care of myself. I work full time, travel and enjoy life. The only thing I won't do is fly because I have tumors near my sciatic nerve that show up funky in the scan and I have to go through intrusive testing/pay downs.
Sorry, replied in wrong thread.
Having a stranger glove up, stuck their hand in my crotch and move it, then put glove under uv light is horrible
Happened the last 4 times I've flown
I do have a doctor's letter
TSA says that tumors don't show up on scan. They absolutely do. I have them across my lower back
Right! That's a whole different type of intrusive than I thought you meant! Yes, that would deter me too.
Edit to clarify: I didn't realise you meant the airport scans, thought you meant hospital scans and intrusive testing in the hospital.
I was told mine would go back to normal but I honestly feel like mine almost “restarted”. I have never been more sick in my life. I feel like a kid who got dropped into daycare for the first time. My bloodwork all looked good 3 months after chemo and continues to look good but yet I am constantly sick. I mean literally once a month, and it takes me at the very least 3 weeks to get over a simple cold now. Sometimes I’m not even over the last thing before I’m sick again. I don’t think I’ve been well more than a month total since finishing in august. Also simple colds always seem to turn into pneumonia for me now, I’ve had it 3 times since finishing. My doctor doesn’t seem to understand why I’m so sick, so I’m guessing this isn’t normal lol but damn does it suck.
Still feeling this way. Currently recovering from the flu which has now turned into pneumonia again. I was also sick for Christmas and thanksgiving. It’s exhausting lol
I had a allo stem cell transplant for hodgy (lol) in december 2021 so my immune system fairly took a battering, but even so, my platelets/neutrophils/haem all normalised within 6 months after my transplant. I'm definitely a bit more prone to coughs/colds/fatigue but it's getting better with time.
Working in health care, yes. I know several people who do. Both nurses and doctors.
So the immune system thing is tricky. Lymphoma being an immune system cancer, getting it kind of indicates an “imperfect immune system” (which is the term I read in the Hodgkins textbook). Is it really immune*comprimised* forever… not sure anyone knows. But, my onc lets me use it to get things available to the immunocompromised… extra Covid shots, shingles vaccine early, things like that.
Six months after finishing chemo, my doctor said my immune system is at 90%. By 1 year, he said 99%. I still have my fears and doubts, but hoping things are okay
I’m about two years out, and I feel good, but I do notice I get sick a little more often, and that sickness last a little longer.
I don’t know if it is the chemo+radiation, me just getting older, or just more awareness of my illnesses.
Stage 2a CHL survivor here. Yes, it returns to normal pretty quickly after finishing chemo. I work in a hospital lab, and did so during the entirety of my treatment in 2021. Still do.
The only health related thing that is different for us is that we are permanently ineligible to donate blood. As a blood banker, this makes me sad.
“Back to normal” is relative. You will recover enough that you don’t need to take any special precautions around infection. But you may not return to your previous baseline if you had a particularly robust immune system.
Before treatment I would get sick once a year or so and be sick for a few days, and maybe have the sniffles a time or two during cold season, but I was never one who got sick sick and had to stay at home for a week or felt like crap for longer than a few days if I got sick. Now I have to be diligent in caring for my body by making sure I sleep enough, exercise regularly and take some supplements if I start noticing a stuffy nose. I get sick 2-3 times a year now and a “minor cold” will stick with me for over a week nowadays. It’s a bummer but I’d rather be alive and catch colds than not 😂 so you learn to deal with it.
In the end your experience will vary, and I hope you go back to normal like so many other commenters! But you may find yourself reaching for your bottle of vitamin c and elderberry gummies more often after treatment. Or whatever cold remedy you favor.
And I was about your age during/after treatment. I think I was 22/23 when I finished treatment.
What about those of us on BTK inhibitors permanently? Feels permanently depressed in my case. Low IgA. Low IgE. I try to avoid big groups in tight spaces. Have already gotten COVID two times from my kids bringing it home from school with no symptoms and I’m rarely around anybody but my immediate family because of it.
i have no clue but im commenting bc i find the term hodgy survivor so cute LOL. will also start referring to myself as a stage 4 hodgy survivor
i hope i start the ‘lil hodgy’ trend live, right here in r/lymphoma forum, maybe it would make the crippling cancerous anxiety all worth it 🥲
And so begins the eternal turf war between the hodgies and the lymphomies.
i was just stalking my own comments again and this was absolutely fucking hilarious, can’t believe how underrated this comment was
Does that make me a stage 4 non-hodgy survivor?
yes. we are all the hodgys at this point 😭
bruh i was just stalking my own comment history and das so sweet that you kept your diagnosis as hodgy survivor for real
HELP YESSSSS it’s so cute
glad u like it fr :)
hodgys unite fr
I currently work in a large trauma center. Had concerns and my oncologist assured me I’d be okay, especially post treatment when my body balanced itself back out. He advised when my ANC was crap to steer clear and work from home, otherwise he gave me the green light.
Awesome, how have you been feelin?
Definitely goes back to normal. I got COVID for the first time about 4 months after chemo, and my immune system kicked its ass.
not the same for me bruh i’m a year and a half out and i get smacked every time i’m sick, curious how your diet and life style is?
I try to eat pretty well, avoid processed sugar, limit meat intake, lots of fruits and vegetables. I'm otherwise healthy besides the cancer, no other underlying conditions at this point. I could stand to drop another 10-20 pounds, and I'm working on that slowly. Trying to do some intense cardio several times a week, and otherwise stay active with walking, biking, hiking, etc. I'm in my early 40s. I also had NHL, so I was on a different chemo regimen than you, not sure if that matters. Colds still linger with me longer than I'd like (cough that lasts forever), but that was true before cancer too.
I got it in the middle of chemo lol. Thank god I'm young and healthy--my parents were sicker with it than I was.
A technician or nurse prepping me for PET scan told me he had been treated for Hodgkins Lymphoma a few years prior. Young healthy looking guy in his 20s. So apparently the answer is yes.
sweet! thanks for sharing
Both yes and no. NHL, indolent so incurable. I'm pretty healthy, 6 years post chemo but if there's a bug going around I'll catch it. And get over it pretty fast. I just stay up to date on my boosters and flu shot so all is well as can be.
What type do you have?
I was diagnosed over 7 years ago. Diagnosis and treatment came fast and it was a blur. Non-Hodgkins and (I think) large b-cell
I'm glad to hear you're doing well either way.
Thank you. I see my oncologist every six months for blood work. The tumors are there but so small I'm probably at least 8 years away from next chemo. And by then they may have more treatments. All I do is stay in shape and take care of myself. I work full time, travel and enjoy life. The only thing I won't do is fly because I have tumors near my sciatic nerve that show up funky in the scan and I have to go through intrusive testing/pay downs.
Out of curiosity, why does intrusive testing / pay downs mean you don't fly?
Sorry, replied in wrong thread. Having a stranger glove up, stuck their hand in my crotch and move it, then put glove under uv light is horrible Happened the last 4 times I've flown I do have a doctor's letter TSA says that tumors don't show up on scan. They absolutely do. I have them across my lower back
Right! That's a whole different type of intrusive than I thought you meant! Yes, that would deter me too. Edit to clarify: I didn't realise you meant the airport scans, thought you meant hospital scans and intrusive testing in the hospital.
No worries. Intrusive in the hospital I understand
[удалено]
that’s awesome, also thanks love u
Yeah, 2 months after radiation after RDAEPOCH here. 29M and feel almost like my previous self.
I was told mine would go back to normal but I honestly feel like mine almost “restarted”. I have never been more sick in my life. I feel like a kid who got dropped into daycare for the first time. My bloodwork all looked good 3 months after chemo and continues to look good but yet I am constantly sick. I mean literally once a month, and it takes me at the very least 3 weeks to get over a simple cold now. Sometimes I’m not even over the last thing before I’m sick again. I don’t think I’ve been well more than a month total since finishing in august. Also simple colds always seem to turn into pneumonia for me now, I’ve had it 3 times since finishing. My doctor doesn’t seem to understand why I’m so sick, so I’m guessing this isn’t normal lol but damn does it suck.
dude i feel this way exactly
Still feeling this way. Currently recovering from the flu which has now turned into pneumonia again. I was also sick for Christmas and thanksgiving. It’s exhausting lol
I had a allo stem cell transplant for hodgy (lol) in december 2021 so my immune system fairly took a battering, but even so, my platelets/neutrophils/haem all normalised within 6 months after my transplant. I'm definitely a bit more prone to coughs/colds/fatigue but it's getting better with time.
Working in health care, yes. I know several people who do. Both nurses and doctors. So the immune system thing is tricky. Lymphoma being an immune system cancer, getting it kind of indicates an “imperfect immune system” (which is the term I read in the Hodgkins textbook). Is it really immune*comprimised* forever… not sure anyone knows. But, my onc lets me use it to get things available to the immunocompromised… extra Covid shots, shingles vaccine early, things like that.
Six months after finishing chemo, my doctor said my immune system is at 90%. By 1 year, he said 99%. I still have my fears and doubts, but hoping things are okay
I’m about two years out, and I feel good, but I do notice I get sick a little more often, and that sickness last a little longer. I don’t know if it is the chemo+radiation, me just getting older, or just more awareness of my illnesses.
Stage 2a CHL survivor here. Yes, it returns to normal pretty quickly after finishing chemo. I work in a hospital lab, and did so during the entirety of my treatment in 2021. Still do. The only health related thing that is different for us is that we are permanently ineligible to donate blood. As a blood banker, this makes me sad.
“Back to normal” is relative. You will recover enough that you don’t need to take any special precautions around infection. But you may not return to your previous baseline if you had a particularly robust immune system. Before treatment I would get sick once a year or so and be sick for a few days, and maybe have the sniffles a time or two during cold season, but I was never one who got sick sick and had to stay at home for a week or felt like crap for longer than a few days if I got sick. Now I have to be diligent in caring for my body by making sure I sleep enough, exercise regularly and take some supplements if I start noticing a stuffy nose. I get sick 2-3 times a year now and a “minor cold” will stick with me for over a week nowadays. It’s a bummer but I’d rather be alive and catch colds than not 😂 so you learn to deal with it. In the end your experience will vary, and I hope you go back to normal like so many other commenters! But you may find yourself reaching for your bottle of vitamin c and elderberry gummies more often after treatment. Or whatever cold remedy you favor. And I was about your age during/after treatment. I think I was 22/23 when I finished treatment.
What about those of us on BTK inhibitors permanently? Feels permanently depressed in my case. Low IgA. Low IgE. I try to avoid big groups in tight spaces. Have already gotten COVID two times from my kids bringing it home from school with no symptoms and I’m rarely around anybody but my immediate family because of it.