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)

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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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Radiant Racheli is an inspiring cancer survivor looking to spread smiles all over the internet by making video blogs on how to fight adversity with positivity and raises awareness for young adults with cancer. Racheli was diagnosed with Lymphoma at age 21 and video blogged her entire journey in its raw form. She laughs, she dances, she cries and, most importantly, she reminds us that everything is going to be okay.

20 comments

  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

  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!

  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!

  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.

  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.

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