My Long-Term Side Effects of Chemo

My Long-Term Side Effects of Chemo

overcoming adversity
People prepared me for many things about cancer, but the long-term side effects were not among them. I was living with the false preconceived notion that side effects would happen along the way, but once I was done with chemo, I’d be healthy and back to normal.

First off, what’s normal anymore? Second, boy was I wrong.

After 12 rounds of ABVD chemotherapy, I was gifted with many long-term side effects. I call them “chemo kisses.” They are my everyday reminders of what I’ve been through and where I am going. In this column, I list the side effects that I have personally experienced. As you read this, please keep in mind that we all experience chemo differently, and some side effects that I have endured may never appear in your life!

1. PTSD: S many things in everyday life trigger thoughts of how I felt during chemo. Whether a water bottle or an article of clothing I wore at the time, the sight of these things automatically lead to a nauseous sensation.

(Photo by Radiant Racheli)

2. Reynaud’s: If you are unfamiliar with Reynaud’s phenomenon, the basics of this condition are that it stops the blood flow to small arteries such as are found in fingers and toes. This occurs when the affected areas get colder than normal. I experience this in the cold section of the grocery store or anytime it hits below 60 degrees (15.5 Celsuis) outside. My fingers and toes turn white and become numb. This and neuropathy are very common long-term side effects of chemo.

3. Change in taste buds: This side effect begins to occur during treatment, and never really went away. Nineteen months have now passed since chemo, and I am still extremely sensitive to salt and can taste even the smallest amounts in all that I eat. I loved many things before chemo that I don’t ever want to eat again (chocolate chip cookies are not my friend).

(Photo by Radiant Racheli)

4. Geographic tongue: This probably explains my funky taste buds, but my tongue is super patchy and white most of the time! I thought I had tongue cancer for a good week or so.

5. Fatigue: Self-explanatory, and so real. It’s not the normal tired that someone feels after a long day of work. It’s chronic, and I experience it as soon as I open my eyes in the morning.

6. Chest pains: This one is tough. It was what led to a lot of my diagnosis with not just cancer but also blood clots and bleomycin toxicity. I still experience chest pain because of a hiatal hernia, acid reflux, and bleomycin toxicity. Trying to differentiate these pains and cancer has been a tough one in terms of PTSD and thinking that the cancer is back.

(Photo by Radiant Racheli)

7. Bleomycin stripes: Bleomycin is the gift that keeps on giving. I now have a bunch of dark lines all over my body that get darker and darker in the sun.

8. Poor eyesight: I have seen a significant decrease in my vision since being treated. I now have prescription glasses and am still hoping that this is reversible.

9. Chemo brain: It’s legit, I promise … even my oncologist says so! I’m hoping this is reversible, too.

There you have it! All of the long-term side effects that I’ve experienced since finishing chemo — at least the ones that I remember. Comment on this and let me know what side effects you have experienced — or if we’ve experienced the same ones!

Although many of these may seem negative, they are more or less a small price that I had to pay to still get to be here and open my eyes each morning. They are my battle wounds that remind me that everything is gonna be OK.


(Photo by Radiant Racheli)


Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.

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  1. Helen Louise Kemp says:

    I want to hug you . I’m 4 years in remission from stage 2 Hodgekins Lymphoma and I’ve tried talking to my Dr about what’s still going on with my body and his attitude is I’m alive and still in remission and to live with it . I’m due to see my haematologist soon and I’ll tell her as she’s utterly incredible . I thought that I was going crazy and being a drama queen . again thank you so much.

  2. Peach says:

    Intermittent muscle spasms… THE absolute WORST! Hands, feet, shin, thigh, abdomen sometimes concurrently may last for hours.

    • Linda Raftery says:

      Try drinking 8oz. Of tonic water. Doesn’t taste so good but works amazingly well. (I understand it’s the quinine that helps.) I have cramps that can bring me to my knees they are so bad. Tonic Water. It works! If the cramping returns just have another glass of Tonic Water. The effects last for a while.

    • Starla says:

      I had muscle spasms too. Mayo Clinic put me on Magnesium supplimemts 500mg (Natures Bounty) for the muscle spasms and I take one (500mg) before bedtime and I dont have the spasms anymore. I hope this will bring someone relief!

  3. Vaudi says:

    I definitely have “road map” tongue, fatigue and chemo brain.I have a hard time staying on task. I can’t remember stuff and it’s not just aging. I had 6 chemo 2 years ago. I spent 8 hours at the hospital every 3 weeks for 4 months. Ugh

    • Laura says:

      Me too!!! 10 yrs & 3 weeks ago. 39 yrs old with stage IV non hodgkins, splynectomy & r chop.
      It did something that made my body hypersensitive.

  4. Teressa says:

    Thanks for sharing, I was diagnosed at 37 years of age with non hodgkins lymphoma. My oncologist wouldnt tell me the stage or grade, but it is all through me, in my bone marrow, my spleen, my groin, stomach and chest.
    I was only diagnosed after a dr took a biopsy of lumps in the roof of my mouth. my oncologist keeps saying on paper I look great, it’s the scans that show it grew. I had 6 treatments of rituximab & bendimustin. During treatment I had to be hospitalized and put in isolation for 10 days because I developed shingles, meningitis, encephalitis and a skin infection all at the same time. It was my 2nd time having shingles and 2nd time having meningitis.

    I am always tired and have body pains, I can’t walk far without having issues breathing. Chemo brain….oh wow…is that an understatement. Also mood swings. Now I also have depression and anxiety, so it could be a combination of that as well, but still.

    I get mad at myself because I can’t remember basic names of things or what I am trying to do, but I am more angry at the fact that I hesitate to talk to the drs about my issues, they either tell me I am imagining it, or that I am over reacting.

    I go for my last maintenance treatment of rituximab in october, after 2 years I will ring my bell.
    I lost my mom to lung cancer last august…after only 8 short months of being diagnosed. Its so hard.

  5. Amanda says:

    Thanks for letting us into your world. It makes me feel “normal” knowing that others have similar side effects. The PTSD was really significant and something I had not thought of but explains a lot.

  6. william says:

    I am 10 years post treatment(R CHOP)for NHL. Still have ChemoBrain(short term memory and concentration), physical fatigue and frequently feel cold. But it still beats the alternative.
    The oncologists must do a better job of explaining the real possibility of experiencing “ChemoBrain”(up to 35% of patients develop such) before treatment begins.

  7. Linda Raftery says:

    I am so happy I scrolled down after reading an article on, what looks like, might be some positive new research. I was diagnosed with Stage 4 Non- Hodgkin Lymphoma 2 yrs. ago. Went through chemo and spinal chemo. I am having the same side effects you are. Two weeks ago my oncologist diagnosed me with Verdigo. Balance issues, dizziness and ringing in my ears. I find that I am isolating myself due to all these side effects. The fatigue is just awful. Everybody thinks that once chemo is over you just go back to your old self. I wish! My type of lymphoma will never go away, but I am in remission now. I often wonder if I came out of remission if I would have the treatments again. Nice to know that there are others experiencing the same things and that I’m not getting caught up I being a “sick” person! Thanks for sharing!

    • Kim says:

      Hi My husband has follicular lymphoma that morphed into Large B Cell in his spine [4″ x 3″ tumor] that broke his back. Treated with R-EPOCH. He is 14 months out of treatment and cancer free. He was just diagnosed with Chemo Induced Peripheral Neuropathy (CIPN}. His neurologist said chemo is the gift that keeps giving. On one side it is still progressing and his neurologist said it is irreversible. His oncologist however is sending him to PT specifically designed for CIPN which is making us think there is room for improvement. When my husband had the EGM test which measures nerve efficacy, the next day he was walking much better. We are not sure what that means but hopefully with treatment he will improve. I hope this information helps.

  8. Paris says:

    I feel like support groups are needed In remission. Between the physical side effects and survivors guilt it’s a lot! Does anyone have joint pain especially when it is cold and damp.

    • Tim Bossie says:

      I have to agree with you there Paris… support groups are incredibly important when you are going through the battle with cancer, and after as you combat the effects of the treatments.

      • Linda Raftery says:

        I agree, Tom. I’m almost two years into remission and it was just recently that I read (on this site) of the lasting side effects of cancer. I have a sensitivity to heat/cold much more frequently. My hands and feet get numb and painful- even in the supermarket! I think joint soreness and fatigue are exacerbated by so many factors. The rain, cold, heat. Hang in there!

    • Dean Sinibaldi says:

      Yes, really bad! Terrible fatigue and bad pains on my left side. I’m 2 years in remission from stage3/4 non-hodgkins diffuse large B cell lymphoma. I had a partial remission from R-chop and it came back a few months later, did 2 rounds of salvage chemo of RICE THEN DID A WORKUP FOR A STEM CELL. My stem cell was autologous “my own cells” 21 day stay in patient at Moffitt cancer center in Tampa, FL. However, the pains lately have been unbearable and I am now becoming depressed and the PTSD is very real. My docs say they don’t know why I feel the way I do my last scan was clean in March of 2017 but I want another right now because I feel like my cancer is back because of the increase in pain which is what prompted me to go to the doc with my initial diagnosis.

  9. Melina says:

    You are certainly right! No one tells you of the side effects and my oncologist refuses to admit there are any since there are no studies from stem cell transplant. Im in remission 2 years from stage 4 non hodgkins lymphoma.
    1. my immune system has never returned and i am not producing antibodies so i will be on life long ivig treatments.
    2. Ptsd
    3. Hands locking and neuropathy
    4. Legs cramping
    5. Not able to digest food and on a strict diet off wheat, beef, gassy foods
    6. Extreme fatigue
    7. Chemo brain

    • I wish someone would have warned us about the side effects of chemo and stem cell transplant. I thought I’d be back to normal too. What is normal now? One side effect that I haven’t read is problems with my esophagus working correctly. I’ve had multiple dilations done and no one wants to tell me if this will be forever! January 2018 will be two years since stem cell transplant and remission.

      • Liana says:

        You have a new normal. When you’re facing a cancer diagnosis and signing all those consents, somewhere in there listed all these side effects. I looked at my consents 5 years after my treatment and one adverse effect listed was death. And there was my signature on the bottom, acknowledging that I knew that it was a possibility even though I never recall seeing it.
        So what I tell a lot of cancer survivors is that you’ll most likely never be 100%. Long gone are those days for most people. We put toxic chemicals in our bodies that kill the good cells along with the bad. But, most of the time I am 80%. And guess what? 80% is still “passing.” Life will never be the same, and that’s ok. My cancer diagnosis, treatment, and subsequent cure ended up defining my life but in a good way. Three years after treatment I went to nursing school, and now I’ve been a RN for 3 years and working in Oncology at a top ten cancer center for the last 5 months. I also give speeches encouraging young adults to get check ups and be advocates for themselves and their health. I was 22 when I was diagnosed with Stage IIB Nodular Sclerosing Hodgkin’s Lymphoma with a Pericardial Effusion after 6 months (!) of going to the doctor for a “sinus infection.”
        Please feel free to reach out to me at any time, I’m an open book.

    • Angela Sendek says:

      I went through Non-Hodgkins Lymphoma back in 89 90 91 ish and I am still suffering from neuropathy very badly it’s debilitating I still have chemo brain I am still suffering and on top of that I’m a veteran so I was stable with my pain from neuropathy but now that the opioid epidemic has come through now they’re decreasing my opiate intake and now I’m having debilitating pain I don’t know what to do I can’t explain it enough to them that my pain is not going anywhere it’s going to be here for life I just don’t know what to do any ideas this is years after chemo

  10. Scott Mortimer says:

    Last chemo treat(ment) 08/31/2007, non-Hodgkin lymphoma.
    10 years … chemo brain, fatigue, leg and torso cramps and peripheral neuropathy.
    I still fish, camp and ride a bicycle for exercise.

  11. Geraldine Molina says:

    Thank you for this. Now I know I am not imagining these side effects. PTSD, chemo brain, not able to eat chocolate or spicy food,always colder than I should be, etc. It’s all real. I am a stage 4 NonHodgkins lymphoma survivor. 7 years in remission and still dealing with side effects.

    • Angela Sendek says:

      I’m almost 17 years in remission and I still struggle with debilitating neuropathy and on top of it I’m a veteran and I was stable on my medication until this opiate epidemic came up so now the VA is decreasing my opiates every month I am now in the bed I don’t know what to do but give up

  12. janie says:

    One year + since my last Rchop chemo treatment with ongoing side effects. Have neuropathy, chemo brain, fatigue, joint pain, etc. I’ve been scouring these sites for two years now to get answers. I too don’t remember the long lasting side effects being made known ahead of time. But I too would still go thru it all over again. What’s the alternative? Yep. 80% of what I used to be is still passing. One thing I noted while studying is that it has only been 20 years or so that people have survived this long. So that is why there are no studies on long term effects of chemo. We are the first long term survivors!! The fatigue is what annoys me the most. I stay home a lot just because I don’t have the energy to do anything. That can be so isolating. And people do not understand. It is thought that once treatment is over the patient is cured and should be back to normal. But there is that new normal that we have to adjust to. And the best (and almost only) information comes from the survivors themselves. Hoping the effects dim over time.

  13. Stephanie says:

    In july 2015, I was diagnosed with hodgkins lymphoma stage 2A with a bulky mass in my chest. I had 6 rounds of ABVD followed by radiation and am in remission now. During chemo i had chest pain and horrible shortness of breath partly because the tumor was partially collasping one of my lungs but mostly from the Bleo. My CT showed some lung damage from everything but it seems minor from what the report says. The pain finally went away 1 year after radiation was completed but out of no where i had a sharp chest pain which seemed to start this off and on chest pain and shortness of breath that i am having again. Some of my lymph nodes will hurt and swell but no tumors. My ct chest today shows that the i am stable. Fatigue is still present as is chemo brain and occasional neuropathy of my feet but it is the chest pain and shortness of breath that bothers me the most. The tumor is only 7 cm now and is in my upper right area of my chest but my pain is mostly all on my left side of my chest. Plus i now have borderline high cholesterol. I am thankful for all the medical tx and care i received. I just feel like i need assurance that i am not crazy and my shortness of breath and chest pain is related to the chemo and radiation.

    • Mike Skonning says:

      Encouraging to see the many stories here that reassures me that my side effects are not abnormal. I had stage 1 Hodgkins in 1990 treated with radiation, followed by stage 2 in 1995-1996 with Chemo, ABVD. The first couple of years after Chemo were tough with nerve pains and chest pains. I’m now 22+ years in remission. I definitely have shortness of breath, nueropathy, and some chemo brain, but nobody would ever guess as I lead a very normal life. Diet and regular exercise keep me at my best, but I’m sure that’s true for anybody, cancer or not. I’ve found that electrolyte water in the morning and prevagen are helpful for focus in the morning when the chemo brain seems to be most challenging.

  14. Elizabeth Baker says:

    I think they ate not clear with us on side effects thinking we will focus on them to much. Like it’s all in our head. 8 years after treatment and I suffer now more then ever. No longer able to work.

  15. Annette says:

    I was diagnosed with Hodgkins in 1984,stage 2b. when I was 6 months pregnant. Spleen was removed. And my treatment was full body radiation. I elected not to have chemo. I thought I served my time, but 27 years later in 2011, I was diagnosed with triple negative breast cancer stage 2b. Was treated with chemo this time because I was maxed out on radiation. The radiation I recieved in 1984 caused the cancer. A year later they removed my thyroid as it was pre cancerous. Now I also have scaring on my lungs and heart problems. Thanks to the radiation. Chemo left me with neuropathy, chemo brain, fibromyalgia, muscle pain and post mastectomy pain that has not gone away. Now the good news Im still alive.

  16. Jerry D. says:

    I am so sorry to hear about all the lingering side effects of chemo that people are having. I have follicular NHL and went through 6 sessions of chemo 21 days apart. I had many of the nasty side effects during chemo but thank god they disappeared about 6 weeks after I stopped chemo about Dec. 5 2017. I feel very lucky considering these posts. I am currently in remission and doing maintenance chemo every 2 months. Obviously, hoping to stay in remission but realize there are no guarantees with this disease.

    Good luck to everyone and I hope you feel better and stay positive.

  17. Eddie says:

    I had stage 4 large B cell NHL and finished RCHOP plus radiation 15 months ago. I have neuropathy, chronic foot pain and chronic sciatica. Chronic fatigue. The brain fog comes and goes. I still have digestion issues including acid reflux from my treatments with occasional bouts of diarrhea. Every time I get side effects or pain in the areas where the scar tissue from the cancer was I worry it may get be coming back. Thank god I don’t have any problems from the 6 interthecals I had. They were a real pita. My tase buds are back to normal and I can finally eat spicy food again. What’s weird is that I was left with a stronger sense of smell. I don’t know what to expect in the long run as far as side effects. Oncologist say my prognosis looks really good. I don’t think my body will ever be normal again. Luckily I’m back to work full time. God bless all of you and I wish you the best of health and good luck.

  18. Peggy says:

    This helpful article could be describing me. The only side effects mentioned that I don’t have are the dark stripes on the body and the tongue problem. The peripheral neuropathy is still quite bad , especially in my feet, food just doesn’t taste how it should, I am exhausted most of the time, get weepy for little reason, and the chemo brain bothers me a lot – 19 months after being told I was in remission. I wake up some mornings not knowing which house I’m in and forgetting what I am supposed to be doing that day. I forget, temporarily, the names of my own loved ones, where I have put things and what I need from the shops. It’s extremely frustrating. My consultant is very pleased with my progress though as I was found to be at stage four just a matter of weeks after consulting my doctor about a tiny, but sharp, pain in my abdomen. Wheels were set in motion immediately and, had that not been so, I would not be here telling you this now. My consult has recently arranged for me to attend a memory clinic, a neurologist and 2 other clinics (the purpose for them I have forgotten and probably won’t remember until the appointment letters arrive). I wasn’t expecting any of this when I signed the consent form but I’m still glad that I did. I had no sickness during treatment whatsoever but did lose every single hair on my body and the mouth ulcers caused by the chemo were the very worst thing I experienced. My hair has grown back finer than it was before.

  19. Phil Pool says:

    My biggest side effect is due to the team of oncologists not asking if I had/ever had Shingles. Third month of treatment, the worst case of Shingles for about 6 months and now almost 2 yrs later, they’ve become PHN (post herpetic neuralgia) and I may have them the rest of my life. If they’d have asked before treatment began, I could have started Acyclovir and most likely wouldn’t have have a flare up from a case 7 yrs prior. I have incurable Waldenstrom’s macroglobulenemia.

  20. Heather Symons says:

    Wow! Great article! More people should read this and know we are not hypochondriacs or malingerers. About 16 years ago, I was diagnosed with stage 3 NHL, underwent CHOP-14, having the first treatment a week before turning 40. After 6 rounds of CHOP, I had a 3 month break, then more chemo to harvest my stem cells. 10 months later, CT scans showed I had relapsed, then I had RICE with Mabthera for 6 months and an autologous stem-cell transplant.

    The abovementioned issues I still deal with are peripheral neuropathy and general aches and pains, which I find are better when I leave wheat out of my diet, brain fog at times, fatigue (chronic and acute – sometimes you’ve just got to stop and sleep), muscle cramps (sometimes Mg helps, sometimes salt), and even after all this time, PTSD (you’re never quite sure whether the lymphoma will return and certain smells and sights bring the whole experience rushing back). Also, my hearing does not seem to be as acute as before, so learning another language or hearing the nuances in music is more difficult.

    The main issue for me, though, is poor digestion. Before the chemo, I could eat anything (I had a cast-iron stomach). During the chemo x2 and stem-cell transplant, I was on prophylactic antibiotics, antifungals, and antivirals for about 2.5 out of 3 years, so it is no wonder my gut took a hit. Now, it seems (even after all these years) that a lot of foods make me bloat, retain fluid, and/or give me “head spins”. Probiotics help, but do not give complete relief. Elimination of trigger foods helps (until you are somewhere you don’t know all the ingredients). Have tried Bromelain and Papain to no avail; am now about to start Amylase, etc (the carbohydrate enzymes). Have been using Lactase for years – it does help with milk, but I am better when I limit that. Am also generally better when I eat more alkalizing foods and limit foods with high levels of free glutamates.

    Apologies for all of the gory details above, especially about the digestion, but if they help just one more person along their journey, I am happy to share.

  21. Donna J Protopapa says:

    I was diagnosed exactly one year ago today with Stage 2, Type B Hodgkin’s Lymphoma. Four rounds of ABVD (4 months of every other week for 8 hours) and then 5 weeks of radiation. The tumor was on my heart and lungs. I was declared to be in remission in late December of last year.

    Nobody tells you about the side effects after or that they may NEVER go away! I have extreme fatigue, pretty serious neuropathy, some food and smell aversions, chemo brain (not nearly as bad as during chemo), thyroid issues (not clear on what those are yet as I am just starting testing on the growths on my thyroid), weight gain and depression.

    Yes, it is better than the alternative but I wish doctors would take the aftermath seriously. I try to exercise at least 30 minutes a day, get enough sleep but we all know that this type of fatigue is not made better by sleep, avoid foods that make me nauseous and wear compression gloves and socks. Honestly, some days I feel worse than when I was actively sick!

  22. Sue says:

    Four years ago I was diagnosed with stage 4 non hodgkins lymphoma large Bcell. I went back and forth to the doctors(6) and kept telling them there was something wrong because I couldn’t swallow food anymore. They did all kinds of tests and said there was nothing wrong. Well if they would have done a CT scan right away it might have saved me a lot of pain- it almost took my life! Doctors need to learn to listen and act on what they are told!!! Now I have neuropathy ( terrible burning all over my body) fibromyalga- muscle spasms in my lower back- chemo brain- horrible headaches and countless other problems from chemo. The Dr. never told me there would be side affects or what to expect after chemo. Yes chemo saved my life so far- but on the other hand it stold my life and makes me wonder if it was worth it. I hate what everyday life as I know it now has become- the pain is unbearable and I don’t think I would ever do chemo again. This is not living and the Doctors don’t seem to understand or know how to treat all the symtoms brought on by chemo! I think they need to be educated on chemo affects and how to treat them, and I don’t mean sending us to a shrink.I also have developed spears on my hip bones and no one knows why.Walking and bending is so very PAINFUL!

  23. Roula Kassem says:

    I was diagnosed with Large B Cell NHL in Dec 2016. early stage. I had 6 rounds of R-CHOP and 17 sessions of targeted radiotherapy.
    I was in remission since my first chemo.
    I have general pain in my back, neck and hips.I have a burning sensation in both hips but more acute in my left hip. I could not find a proper sleeping position as whichever position I take needs to be adjusted shortly afterwards. Result: intermittent sleep and fatigue.
    Morning stiffness is another big issue. It takes me around 10 minutes to release my joints and feel Ok.
    Again I still have numbness in both feet. My hands are much better though. Chemo brain, a funny term,I come across it daily in the form of forgetting names, telephone numbers that I use frequently and other routine dailies.
    All In all it is manageable so far. My hair grew back, and am able to go to work regularly.I have not regained my initial strength and endurance, but I try hard to exercise and keep the momentum. Again my diet is healthy all in all. No refined sugars, no cow dairy products. Lots of fresh fruits and vegetables. Olive oil and Coconut oil instead of corn, palm and soya oils. My oncologist suggested Glucosamine which I’ve been taking for 2 months now.No difference so far. It is encouraging to know that many people suffer from similar side effects. Maybe our collective complaints can shed light on future solutions for pain management.

  24. Rebecca Britton says:

    I appreciate reading all of your posts. My mother had Hodgkin’s Lymphoma approximately 33 years ago. She is now 87 and has never had any other cancer since then. She and my family are so blessed. Now I have a niece that was diagnosed with Hodgkin’s at age 36. She has finished her chemo and now is starting radiation. I came across this site as I am trying to do my own research as my mother is now having problems speaking. She had a CT and MRI of the brain which was negative for a stroke, so I was trying to research the specific medications she would have be treated with to see if there is any long term studies that may show this as a late side effect. It is slowly getting worse as the months go by. This is very difficult for her as she was always a very intelligent, social, active person and now is losing the ability to communicate. From what I have found, so far it sounds like she now has Verbal Apraxia or Dyspraxia. May you all continue to be strong and share your knowledge with each other. Knowledge is power.

  25. Luu Le says:

    Thanks you all, the NHL survivors have shared your stories that help me from depression. Now is my turn to share with you some of my own experiences with the hope it will help some of you.
    I went through 6 cycles of R-CHOP treatments for stage 4 of Large B-Cell Lymphoma that end in October 2015. Eighteen months later March 2017 the disease recurring and went through a very intense treatment course with RICE chemo twice (before and after stem cell harvesting), analogous stem cell transplant with 3 weeks hospital stay for the procedure. Recover for 80 days then follow with 20 sessions of target radiation. All treatments ended in late of October 2017 and I’ve resumed all supplements that I have taken for years. They are multivitamin, fish oil, B-complex, probiotic, lutein+zanxethine, glucosamine chondroitin, milkthistle and tumeric capsule.
    The key I need to press here is I had to take prilosec during cancer treatment due to my stomach could not digest whatever I ate though not much as you know.
    Once I was able to resume my routine vitamin supplements, I’ve substituted tumeric capsule with loose tumeric powder and take on heap teaspoon full with fresh brewed green tea.
    This is a very hard, I have to add enough tea into tumeric powder to make it thin to swallow. To me, it helps in digestion, get rid of body aches and also it has cancer prevention effect.
    For the last 8 months after the treatment, I’ve had a very physical healthy and felt so blessed. Until two months from now, I’ve developed painful cramps on my legs, feet, hand especially when I lay down. Then gradually it become more sensitive to touch which I can refer to chemo induced peripheral neuropathy. I couldn’t sleep well at night as the headache, the pain on my face and my body. I called my oncologist as I was shock as these pain start so late. My world turn from rossie to darkest since I didn’t know what have been happened. What he told me was it is ok, nothing serious and see him on next scheduled visit a month and a half away.
    Depression so I search on the web and found out that I am now alone so I will try to cope with the pain and live with it for what ever it takes.
    In short, if you have problem with body aches and digestion then try the tumeric powder as I been taking. If you find it’s hard to drink the powder then buying it in the form of capsules, buy it online for best deal from herbal websites such as puritan pride or swansons or some thing online. Store sales usually cost more.

  26. Susan Fulton says:

    Hi I am now 22 months free of stage 3 breast cancer. I went through 2 surgeries, 16 sessions of chemotherapy and 33 radiation sessions and I still suffer annoying side effects. I have chemo brain (can’t remember things and that makes me crazy) I also sometimes have difficulty getting my words out when speaking. I have neuropathy in my toes and my fingers, that flare up more intensely when I am trying to sleep. I get really tired very quickly, no stamina at all, and my moods change so much that I feel I am on an emotional roller coaster. My tolerance to cold and hot weather has increased dramatically,my sense of smell has increased to the point that I smell the slightest odor in my house and it makes me crazy. I no longer sleep through the night, I’m lucky if I sleep 4 hours at a time and my joints hurt all the time. Other then that I am doing well, I am thankful that I am still alive but truthfully, I do not believe I would go through chemotherapy again knowing what the possible side effects are.

  27. T. Campbell says:

    I had HL in 1994. My chemo treatment was ABVD. I could not do radiation because I had total involvement from my neck into my groin area and they said it wouldn’t be good for me. They gave me a 50 percent chance of beating this cancer.
    I have been clear of this disease for 25 years now. However my side affects are as follows:
    chemo brain-yes! it is real!!!!
    tingly feet and hands
    carpel tunnel and thumb trigger release surgeries
    adrenal issues-poor functioning
    thyroid issues-hypo
    achy joints
    low calcium and magnesium levels
    depression-chemo changes how the brain chemicals convert ( before treatment with effexor I could cry at the drop of a hat!)
    tired all the time
    low modivation- not like me at all. I like a clean house and like to keep things spotless. Some days I can’t even hardly get myself up off the bed to go to the bathroom! It is a struggle!!!
    hearing loss
    my vision improved!!
    loss of hair-I have little eyelashes and eyebrows and thin hair on my head

    Hope this helps some one out there!

  28. chris says:

    Wow I have just found this article and decided to read it and the comments made by you all. I am not insane whoopie. I was diagnosed with NON Hodgkins in 2005 went through Chemotherapy for 8 months. Thank fully I am still in remission. However many of the symptoms in these articles have manifested themselves over the years since. Body pains especially joints that have no explanation (so the GP says) I became Diabetic and I am certainly never been over weight, I have Non Alcoholic fatty liver and I rarely drink. I think that the powers that be should realise that chemotherapy treatment effects everyone physically and mentally. PTSD is a label that I have never thought of before and chemo brain omg now I know what to call my bouts of non thinking. Fatigue is so under investigated it is put down to all sorts of things, Sorry if I am rambling on but I have been looking for answers to the question of long term effects of chemotherapy in the wrong places. I recognise that chemo saved my life but why medical professionals never look at the quality of life after chemo baffles me.

  29. Trishia White says:

    Diagnosed with stage 1A favorable Hodkin’s Lymphoma on 03/29/19. Started ABVD on 05/03/19. Was just told today that I am now cancer-free, and I had the option of doing 1 more round of chemo without the Bleo, so it would be just AVD, or I could do radiation, after much discussion, I opted to do the 1 more round of chemo. I did my research and attended a chemo class, so I was prepared for most of the side effects as well as some that never even appeared.
    *I’ve had nausea that has been controlled with meds and a patch.
    *Extreme fatigue that only seems to be getting worse but my hemoglobin shows that I’m anemic so it’s to be expected.
    *Chemo brain that is frustrating.
    *Hair loss over my entire body but I was expecting it and once I started losing clumps of hair, I went and had it shaved off.
    *Occasional bouts of constipation.
    *Occasional mouth sores and even more rare, swelling in my throat, of my tongue and gums. A script of Magic Mouthwash is a wonderful thing!
    *Even though I’m extremely fatigued I have found I’m unable to sleep through the night, sleeping in 4-5 hour excrements.
    *Pre chemo I was always cold, post-chemo I am always overheated and on chemo days I consistently carry a mini fan around with me since I find that I’m always hot.
    *Occasional nose bleeds.
    *Muscle cramps.
    *Occasional headaches.
    *Occasional bone and muscle aches.
    Everything listed above I was prepared for and while they are bothersome the one that I am having the most issue with is the change in my taste buds and sense of smell. In all of my research and even in my chemo class these 2 issues were just kinda brushed over but not focused on so I didn’t really worry about it until it happened. It has now become a huge issue for me. The one thing that is causing me the most problems, I have had multiple meltdowns over it. Everything I have found or been told, if your taste buds change, it will be a metallic taste in your mouth, but almost everything I have read makes it seem like it’s not a huge deal and for me, it’s a HUGE deal and it’s not a metallic taste but rather a chemical taste. Almost everything I eat tastes like a chemical or as I describe it, it tastes like my chemo drugs or the smell that I sweat out of my body after chemo, if that makes sense. Right now there are about 2 or 3 things that I’m able to eat for a meal, and maybe 4 things I’m able to eat as a ‘snack’ type food. It used to be about 6 things meal wise and 4 things snack wise, but now I’m down to approx 3 things meal wise. I never know when I sit down to eat if it’s going to taste good or like a chemical. Everyone says, eat your fruits, but every fruit I’ve tried, tastes like a chemical, be sure to get your protein, but they all taste like chemicals.
    It’s extremely disheartening to not be able to eat almost all foods, to have to eat the same thing over and over and over. This one aspect is what has caused me to experience bouts of depression and anger.
    Now that I know I only have 1 more round of chemo I am hoping that the taste of chemicals will not hang around too long. I know that there is no set time frame for it, that it could take 1 week or 6 months, but I’m hoping that it doesn’t last too long and that I get a few foods back soon.

  30. Karla says:

    In March 2020 I had nagging pain in my upper back between my shoulder blades. It became intense and I ended up having emergency surgery. Surgeon removed a tumor from my spinal cord and found non Hodgkin lymphoma all over my back. Primary cancer is in bone marrow (stage 4). Have finished 6 chemo treatments and 4 spinal interthegals with radiation yet to come. I couldn’t walk at all after back surgery and even though physical therapy is really helping with that I am still numb from top of rib cage to my toes. Not being able to walk was harder than enduring the chemo. Am scheduled for pet scan next week so good luck to me!

  31. John Pennell says:

    The surgery went well, things were going good for a couple weeks…then the Chemo/radiation therapy started. My mom fought these gruesome side effects for two years… Chemo killed her… stay away…

  32. Angela O'Dwyer says:

    Hi all, I’m 3yrs post treatment for hodgkins lymphoma, and my jaw has just hit the floor, I’ve been looking for answers for the last year or so as to why I’m in constant pain daily from spasms in my feet and hands, to chronic back pain all of which I never had before chemo. I try not to moan as I know treatment was a necessary evil and am grateful to be here and count myself very lucky,has anyone with the same symptoms found a way around the pain without taking anything pharmaceutical or will I always have this pain?

  33. Gary G says:

    I have severe neuropathy in my feet and recently it is affecting my face, I wear Nano socks and they help with my feet has anyone experienced it in their fac

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