• R-CHOP LONG TERM SIDE EFFECTS

    Asked by aracooper on Tuesday, January 13, 2015

    R-CHOP LONG TERM SIDE EFFECTS

    I have been in remission for over 4 years from stage IV NHL. The issues I have had is the severe long term side effects from the R-CHOP. One month after treatment I developed several auto immune diseases such as psoriatic arthritis, seizure disorder and others that they have linked to R-CHOP. I am no longer able to work. I am only 54 years old and some days I can't walk. I have had to have surgery on my hands because both of my hands completely froze one month after my treatment. I have had brain issues as well. I can no longer multi task. It takes me a long time to learn anything new. I can't read books because I forget what I read the day before. Before Chemo I worked for a large company and managed a staff of 25. I flew all over the country doing presentations. I used to be smart. I don't feel smart anymore.
    Am I the only one that has these issues with R-CHOP? Is there anyone else out there? My oncologist tells me that 5% of R-CHOP users can have severe long term side effects.

    56 Answers from the Community

    56 answers
    • barryboomer's Avatar
      barryboomer

      I have NHL but opted out of ANY Treatment. Lots of people here WILL respond to you so just sit tight. I find it repulsive at the side effects. I know you got 4 years and that is Fantastic but at what cost. Can you imagine HOW toxic this stuff is to cause that kinds of problems. UGH....Good Luck!

      over 4 years ago
    • aracooper's Avatar
      aracooper

      Thank you barryboomer. Do you mind if I ask you how you are doing? What stage are you in? Have you had any treatment at all?

      over 4 years ago
    • junebug0121's Avatar
      junebug0121

      I did not have RCHOP... but did have CHOP for Hodgkin's Lymphoma due to not being able to have ABVD protocol treatment due to lung issues. Guess what? I now have more severe lung issues, decrease in kidney function, forgetfulness, depression. I used to work in a fast paced, high stress job as well. Thought I'd perhaps try again, but know that I don't have the snap I used to have. My feet are so dead that I have to look down to see if I have socks and or shoes on. I had CHOP 2 years after having 7 months of Folfox, 5FU for Colon cancer, so sure that didn't help the situation. My doctor told me CHOP was as bad as it gets.. and to me it was brutal beyond the previous chemo.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Hey June....what are you doing NOW to try and stop it from just coming back?

      over 4 years ago
    • aracooper's Avatar
      aracooper

      Thank you Junebug for responding to my question. It helps so much to know that I am not alone.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      I had R-CHOP and later had a combination of Zevalin and Velcade. I have since developed a neuropathy in one leg helped by acupuncture, a vestibular disorder, bladder incontinence. Fortunately, my mental capacity has not been affected. While I have been unable to do physical therapy, will try later this year, I am able to work at a job scoring exams like high school writing tests. Maybe I should clarify that. We are in training now for a new project. Qualifying rounds are today. I'm not sure I'll qualify on this one. Ya'll pray for me.

      over 4 years ago
    • kiki95632's Avatar
      kiki95632

      I have had R-Chop and also have auto immune disease and RA. RA came after R-Chop. I also have depression and take something for that. Last treatment because I had tumors in my lungs was CVP plus Rituxan. It seemed to be easier than R-Chop. I can't work anymore either. I think that makes my depression worse. The loss of income and just being around people.

      over 4 years ago
    • aracooper's Avatar
      aracooper

      I appreciate your responses. I also have experienced severe depression since treatment that I did not mention in my original question. I told my Oncologist not long ago that I have never felt like a Cancer survivor. Before I had Cancer I was perfectly healthy, I had a great job that I loved, I made a great living, I played golf and Tennis, I went to the gym. I played with my granddaughters. I traveled. I did what I wanted. Cancer took all of that away from me. Yes RCHOP saved my life but at what cost. Now I can't work, my body is in so much pain that I can barely walk let alone golf or play with my grandkids. No, i don't feel like a Cancer survivor.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      ARA....the scary question is HOW do you know it saved your life? How long did you have the cancer growing before you knew about it. Chemo kills a lot of it but the ones that survive grow back and are stronger than the original cancer. How many people die with cancer in their bodies for MANY years....not know it and drop dead of something else. So many are being treated much earlier but the don't have studies whether it's mostly good. Besides the cancer growing back being stronger than the original NOW you have a sick immune system AND a multitude of new problems and maybe other cancers. LOOK this is their Marketing angle that they saved your life but now you MAY be a cripple. I DON'T know what the answers are but Many die from the treatments and not the cancer. SO.....I'm just asking pesky questions nobody really wants to hear or deal with. I have no idea of anything but like to ask WHY, WHEN and HOW COME and I'm always in trouble for it. If people don' like or don't agree with the message but really can't or won't refute it what do they do?
      ATTACK THE MESSENGER....hugs to everybody today and hope today is the Start to your HEALING.....Seems like there is too much killing but not enough attention by the Docs on our Healing....WHY???????

      over 4 years ago
    • junebug0121's Avatar
      junebug0121

      barryboomer.. I don't know that I'm doing anything to keep it from coming back! I can't get out and do cardio exercise, I can't run. I eat lots of broccoli!!! That's for the colon cancer. As for the Hodgkin's.. I didn't even know I had it.. they don't know how I got it, and likely it will come back. On another note.. my grandmother passed away night before last. She survived a heart attack and surgery in the 1970's, survived colon cancer and surgery at age 86... after stopping chemo after 3 treatments. She left it in the Lord's hands. So... she caught a case of "sniffles" in the nursing home and died. She was 101 years old.

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Hey JUNE....in a hundred years I BELIEVE that when they look back at this period of Poison and Nukes as healing agents for cancer it will be looked back at in Horror. They will have a simple way of tweaking the DNA and change them back to normal and they will just start to behave and die off. They used to use Blood Letting and thought that was state of the art. The Horrible Surgeries are will also looked back at in shock.....BUT That's where we are now and it is what it is....AS THEY LIKE TO SAY.....It's the only disease where many find out they have cancer growing in them for probably many years.....feel fine and as soon as they get the treatment they are sick as XXX....What's up with that? BUT like I say....that is where we are.

      over 4 years ago
    • ibdragon2's Avatar
      ibdragon2

      June and Barryboomer... This may not be available to all but I live in Portland, OR and have a great Naturopath. She started me on IV Vitamin C treatments about a month before I started chemo. I completed 3 courses of Chemo(CHOP-R) plus the IV Vitamin C treatments(which were done weekly through my port) and my PET scan came back completely clear. I completed two more modified chemo treatments(much lower doses of the drugs) and have had another completely clear scan. The Vitamin C seemed to help with some of the other issues that accompanied the chemo and is boosting my immune response now as I am still getting the treatments at a lower dose once a month. Vit C had no side effects which is hard to say about any drug these days. The dosage of Vit C was 250 grams and it must be given intervenously to be effective against the cancer cells. My Naturopath is kind of a front runner in our area in using Vit C. Just like any treatment though, the results vary from one individual to another. I am a nurse so was a bit skeptical but I read all that I could get my hands on and talked very candidly to her about using Vit C in this way. Since Vitamin C isn't very expensive and the drug companies can't get a big payback from doing any studies using it there have only been a few studies that have show great effectiveness in killing CA. The good thing about Vit C, it seems effective in a number of types of CA. She has treated me with lymphoma stage IIIa, others with ovarian ca, lung ca, prostate ca and breast ca with good results. It also depends on the patients willingness to get and complete the treatment. Unfortunately, none of it was covered by insurance so was all out of pocket. But to avoid having those chemicals in my body again I would do anything to avoid that!!!

      over 4 years ago
    • barryboomer's Avatar
      barryboomer

      Insurance will cover $100,000 for Poison but not one red cent to help us get healthier.....what's up with that. In Florida they banned any new ND's about 20 years ago and there just aren't any. Can't get IV C anyplace. No complimentary Docs anywhere for miles around that I can find. Just the same old Same Old.....they are all scared of FDA, AMA and being sued...Sounds like a winner eh?

      over 4 years ago
    • darracq's Avatar
      darracq

      Aracooper, I feel compelled to share a few of my experiences with you in hopes of helping. Your problems have produced a lot of empathy in me, which I consider priceless. If you want to avoid reading this long post, just know that I think certain symptoms that were caused by my chemotherapy appeared to be permanent for a year, but are now clearing up. For example, my eyesight got much worse after chemo. It seemed permanent, and now it seems to be coming back to the way it was before, so there is hope, I think.

      O.k., that's all you need to read, really.

      My mentality at the beginning of this was very similar to barryboomer's. After the only surgery I've ever had, for an umbilical hernia, I learned that they'd discovered mantle cell lymphoma in the post-surgery biopsy. Less than a week later, I was at Sloan Kettering, hearing them tell me they wanted me to have a stem cell transplant as soon as possible. Scans had shown that I had several moderately inflamed lymph nodes in my body, a colonoscopy had found some in my intestines and a bone marrow biopsy had proved they were in the bone marrow. However, I felt perfectly well and my blood scores were absolutely normal. The only discomfort I felt was a slightly enlarged spleen. My philosophy was that any year I gained by aggressive treatement would be shaved off the end of my life by tissue damage caused by the therapy. That was just something that I believed, probably because I can't stand the medical profession.

      To avoid the Sloan Kettering recommendation, I sought out every expert in New York who believed in waiting, in hopes that a case could be indolent. Turned out the medical world was divided between the waiters and the nukers. The Sloane people were the nukers. About a third of other doctors believed there was no harm in delaying treatment. After reading 200 or 300 pages about the disease, I realized there was no absolutely proven standard of treatment. I was probably terminal, so why not experiment by waiting a while?

      However, coming down the line was a new enzyme inhibitor that Wall Street was crowing about— ibrutinib—because it would cost $130,000 a year. The FDA had already given early approval to the drug as a second line of treatment for my disease, and trials were starting for its use as a first line of treatment.

      I was attracted to this drug because, supposedly, it only targeted sick cells, unlike chemo, which is a generalized nuke. I now don't think that's completely true. My plan was to try to join one of those trials if my blood tests showed any decline. Until I met one of the young doctors running one of the trials for ibrutinib, who talked me into deciding that early treatment might give me a longer remission—only in his opinion, of course!

      I joined the trial, which was a double blind, which meant that 59% of the people would be getting a sugar pill. Everyone, on the other hand, would also be getting bendamustine, which is being used as a replacement for R-CHOP in these cases. Turns out that bendamustine had been used behind the Iron Curtain for years quite successfully, until the West was clued into it. The Germans had done extensive testing, they said, and were claiming that bendamustine was both better tolerated and produced longer remissions than R-Chop. I was also given a monoclonal antibody intravenously, which I'm still getting every 2 months, now that the bendamustine part is over.

      The big question in my mind was why Sloan wasn't using bendamustine instead of R-CHOP. Apparently, they didn't credit the German study enough to change. That really bothered me.

      The bendamustine didn't make my hair fall out, didn't nauseate me, and didn't make me lose weight. Everything was hunky dory for about a year, when it became fairly apparent that the experimental pill, ibrutinib, was suddenly producing worrisome side effects. At least it seemed as if they were being caused by the ibrutinib. Sure, it targets the right cells, but it also reduces your immunity, so that the superb blood tests I'd gotten before I'd started were no more. In other words, to attach the cancer cells that had to fool with the balance of blood cells in my bloodstream.

      To make a longer story short, all of these drugs (exactly which I don't know) screwed my eye sight up somewhat, and they began to shatter and infect my fingernails, produce facial acne and finally staph infection sores that were threatening my entire body. So they lowered the experimental drug from 4 pills a day to 3 pills a day and everything cleared up. My energy came back. The nails healed and facial acne disappeared.

      But my reason for writing this message is that things that seemed to be caused by the chemo also finally cleared up. My eyesight seems to be returning to the state it was in before the chemo. I truly believe there is a good reason to think that you will get better, too, Aracooper. Not all of the damage is permanent.

      The other advice I can give you is how much so much of this seems to be the result of your mentality at the time. For a whole year of treatment, I felt perfectly fine. Two days after a lover broke up with me and I fell into a depression, all of the symptoms I have described poured in. I hope you'll believe that you cannott predict the future, and that it's reasonable to hope that some of the afflictions caused by your treatment will evaporate into memories.

      over 4 years ago
    • darracq's Avatar
      darracq

      Correction: When I said, "I joined the trial, which was a double blind, which meant that 59% of the people would be getting a sugar pill.," I mean "50%."

      over 4 years ago
    • aracooper's Avatar
      aracooper

      darracq - thank you so much for sharing you story with me. I find it humbling when I see the strength and courage that you and others have in dealing with your illness. I too had hoped that in time my symptoms would go away and my life would go back to normal, however it has been 4 years since my last RCHOP treatment and all of the same symptoms are still there and have progressed. My Oncologist at first did not admitted that he did not know anything about the side affects of RCHOP and that I was his first patient with such severe side effects. Thank God he was a very good doctor because he stuck with me and he educated himself and referred me to doctors that did know how to treat each one of my side effects and had a background in Chemo drugs and their effects on our bodies after they kill the Cancer. To this day my oncologist still quarterbacks my case and watches over me. Which is a good thing.

      over 4 years ago
    • BigE54's Avatar
      BigE54

      There are hundreds of people on this site who list NHL as their diagnosis, so if one assumes they are getting the standard of treatment, they would be getting R-CHOP, yet only 5 people are here talking about the side effect...where are all the other people if this is so prevalent? Sure, there are potential side effects, but to say imprecise words like "many" is very misleading. 100 is many, but 100 out of 1,000,000 is really not many. As for me, I didn't have the full rchop because I had heart issues, but i did have 4 of the 5 chemicals, including rituxan, and I was NED after 2 sessions. Do I have side effects? All I can say is, maybe...i have major mobility issues, but to tell the truth it was developing before the cancer, after all I was 6 foot tall and over 300 pounds. And I will trade walking without pain with being alive any day of the week. My grandchildren are 2yrs and 8 month and I will figure out a way to play with them that will make them happy and at least hopefully I will live long enough that they will actually remember me when I am gone.

      over 4 years ago
    • Schlegel's Avatar
      Schlegel

      BigE54, first the literature talks about most of these side effects, and some of the side effects are common enough that oncologists and neurologists know about them. Also, most of the people in my blood cancer support group experienced some of them. So it is not a small number.

      over 4 years ago
    • emerald's Avatar
      emerald

      2&1/2 yrs ago diagnosed NHL stage 2 major openheart procedure surgery followed by RCHOP 4weeks later. So far so good. But body ain and severe hip pain is unbelievable. Tire very easy & class myself as lazy, compared to never keeping still before i was sick. Trying to get someone in the medicl profession to believe me is another thing. I quietly go about my business but am silently screaming inside. Any suggestions much appreciated :)

      over 3 years ago
    • Schlegel's Avatar
      Schlegel

      I had R-CHOP ten years ago. This year I developed severe, severe leg pain in my left leg. Turned out it was a spinal problem although the Duke doctor said it was not a spinal problem. I went to Triangle Orthopedics, and they did an MRI and found it was a spinal problem. Within a few days of getting a spinal injection, the leg pain was gone, but then I had a compression fracture at the twelfth thoracic vertebra with severe back pain. That was probably from R-CHOP or other chemo. I had a vestibular disorder with dizziness three years ago, probably from one of the chemos. Almost everybody in my blood cancers support group has incontinence due to chemo.

      over 3 years ago
    • barryboomer's Avatar
      barryboomer

      Isn't it amazing that they sell this crap to sick people...

      over 3 years ago
    • Goldenmare's Avatar
      Goldenmare

      I am in remission about 2.5 yrs. I had RCHOP. I am having terrible rashes on my forearms and had a biopsy they said was lymphoid hyperplasia. From my chemo I still have some neuropathy in my feet, my sense of taste is about 1/3 what it used to be at best and my ability to remember some things and calculate and the loss of words is so hard to deal with. I feel so dumb sometimes. I used to work for a major financial company, but just last night I was in tears that I just can't remember when playing pool if I was stripes or solids. Sounds foolish but these little things add up.

      over 3 years ago
    • aracooper's Avatar
      aracooper

      Goldenmare, I have the same issues from RCHOP. I am the person that started this particular board over a year ago. I have been in remission for 6 years now and still suffer. I too had the rash on my forearms, also on my legs. They itched so badly. The memory problems continue and the loss of words has to be the worst. I have even gone to speech therapy for help but nothing works. I also worked in a professional capacity but I am now unable to work and I am on long term disability. Hang in there my friend. I wish I could tell you that it will get better. All I can say is this is your new normal so be patient with yourself.

      over 3 years ago
    • MaryBr's Avatar
      MaryBr

      I'm 38. I had rchop two years ago for stage 3a NHL and to be honest I feel great today. I can see that maybe my brain isn't as sharp as previously but that could be because I haven't worked in two years and I hadn't been speaking English for the last ten years as I lived abroad. I've had cancer twice now, two primary cancers and Thanks be to God I feel great. No pain, no side effects so far. Long may it continue :)!

      about 3 years ago
    • MissBelvedere's Avatar
      MissBelvedere

      Thank you for your stories and Insites. I find this interesting to see I'm not alone with e fighting the depression and not having the energy or levels of concentration that I used to have...

      I am 4- years since the chop/r - 3 treatments, then radiation... My treatments were in the winter... My mom had just passed away and my husband was on the road with a new job that had him home only 4 days a month... I had a roommate and a dog... My "therapy" dog and I walked 5-7 days average a week... 2-8 miles daily... It was my sense of freedom... I was very bitter over the loss of my mom and some family issues...

      Today, I still walk about 200 days a year. ...I tell myself, I'm not allowed to come home unless I hit the 2-mile-Mark minimum ... No race, I don't care how long it may take me... But it helps me to plan my day quietly in the morning...

      I do find it difficult to multitask and being in sales, that's a must... But knowing that limitation, I complete the task at hand, or find a good stopping point to pick up later...and go to the next task of urgency. I am also more forthright in telling people "when I am done, I will get to you"...If they keep challenging me, my response is "sorry, I can only do one thing at a time. I'm sure you can understand"... I actually think that knowing my new limitations has strengthened me to formulate new ways of accomplishing tasks... And being gentle with myself...

      I do find I get severe headaches... It could be from dehydration but not sure.

      My doctor marveled during my treatment and my annual follow ups... I think the anger and bitterness, and loneliness, helped me to be useful to helping other people during treatment and afterwards... Plus I prayed a lot... Still do... And I've learned to relax a bit and not be so hard in myself....

      about 3 years ago
    • pmak's Avatar
      pmak

      women have NHL LAST 3.5 YEARS , COMPLETE R-CHOP 6 CYCLE.. NOW RUNNING RITUXIMAB FOR FURTHER MAINTENANCE NEXT TWO YEARS EVERY 3 MONTHS . NOW SEVER PAIN IN HIPS TO LEGS ON SITTING NO RELIEF ....THERE IS NO PROBLEM ON STANDING . GUIDE ..

      about 3 years ago
    • Schlegel's Avatar
      Schlegel

      pmak, see a physiatrist. You may need a spinal injection. Osteoporosis and other spinal problems are a late side effect of chemo. Last year I had severe, severe pain in my right leg all the time. A few days after I got a spinal injection, the leg was fine. And, if anyone tells you that it is not a spinal problem without doing an MRI, see another doctor. That's what happened to me, and so, my pain was prolonged.

      about 3 years ago
    • NorthBeach's Avatar
      NorthBeach

      My husband is 5 years post R-CHOP for Non-Hodgkins MALT Lymphoma in the lining of his eye directly in front of and a fraction of an inch from his brain. The long term effects have been devastating for him. He can not remember anything - he has tremendous difficulty focusing. He was a avid reader, but can no longer read books as his retention is gone and his ability to focus is seriously hampered. His loss of words is incredible. He also suffers seizures - aprox 2 to 3 times a year. His seizures consist of the sudden inability to form a sentence. His words come out completely garbled as if he is speaking a foreign language. He does not lose consciousness or balance or anything else. He just simply can't speak a normal sentence. These last for about 1 hour and then everything returns to normal. He also has moments of comprehension and reasoning difficulty. His Oncologist believes this is all simply co-incidental to the chemo treatments. We do not agree. This all began with his second chemo treatment, although the seizures did not begin till aprox 6 months later. His neurologist believes this is all Chemo related, and has labeled his periods of inability to speak as "seizures". My husband feels completely helpless at times, and he is continually apologizing for being "stupid". He is cancer free and had the type that is not anticipated to return. This is heartbreaking as so many people just assume he has dementia (he is 70 now). His Neurologist, Neuro-Psychologist, Oncologist and GP simply listen to the list of deficits and just shake their head. No help has been suggested or offered.

      almost 3 years ago
    • ChristineAzar's Avatar
      ChristineAzar

      I got stage 4 NHL 8 YRS ago.I was diagnosed having a abdominal hernia repair.I had RCHOP every 3 weeks for 18 weeks.Then a PET scan said it didn't work they gave me 4 more RCHOPS,Then as PET scan cancer still there,then I got R-CHOP everyday for 2 weeks.Another PET scan,they said cancer was still there cause PT scan kept lighting up,meanwhile my mediports became infected and infection went thru my whole body,I was now septic.They took out port and put some new one in.That one became infected and they took it out and put in a pick line.They told my hubby to take me home and call hospice.HE told them all to go you XXX and he was not taking me home.I had fevers and chills for over 6 months,the infectious disease Drs could not find the right antibiotic for me.By this time I had lost 103#s.My hubby got the whole family and all doctors in a conference and they agreed to do exploratory abdominal sx.The surgery was 5 1/2 hours they went in and found a bunch of dead tumors,abdominal mesh from a previous hernia repair and removed them,finally found the correct antibiotic.I was now on the mend.I had been throwing up for 5 months with fever and constant diarrhea.My eye sight was worse my hair in front has never grown back,and I'm dizzy,and if I turn quickly I fall down.My balance is still bad I went to physical therapy for 12 weeks,went in in a wheelchair came out walking with a cane.My mind is not the same.I have depression.My hubby got lung cancer 4 yrs ago and I couldn't save him he died on xmas eve 2012.My family thinks I should be all better again,but I'm not the same,I'm tired after doing very little.I have constant stomach pain.Whats wrong with me.I see my oncologist every few months.

      over 2 years ago
    • rene2's Avatar
      rene2

      I found this forum while researching long-term effects of r-chop as I was curious and wondered what to expect. I was diagnosed with stage 3 large b-cell NHL in April 16. I'm 53 yo, moderately active, and slightly heavy for my height. I had surgery to remove a tumor/lymph node in my neck and they used that for diagnosis. I had r-chop every 3 weeks for 18 weeks. My tumors shrunk after the first treatment. All of the side effects I had during treatment have subsided. What I find interesting is that compared to all of the posts I've read my illness and recovery have been opposite. I have felt bad for about 4 years. Extreme fatigue, severe short-term memory loss, sleeping all the time, hot flashes (that I attributed to menopause, even though I was on HRT), and night sweats. I went to doctor after doctor and begged them to find what was wrong with me and tell me it wasn't in my head. Every blood test, even those ordered by an endocrinologist, came out perfectly normal. It wasn't until the tumor on my kidney and then the one in my neck grew large enough to cause issues that I was finally diagnosed. During treatment I definitely had some of the side effects of the r-chop; however, I am now two months post-treatment and they are all gone. The most profound change is that I feel better than I have in the past four years. The brain fog is gone and I feel like I'm thinking and feeling the way I am supposed to be. I'm sorry so many of you have lingering issues and I hope and pray that those become less and less and eventually you feel better and normal again.

      over 2 years ago
    • Schlegel's Avatar
      Schlegel

      ChristineAzar, I feel for you. If you are asking if there is something wrong with you mentally, the answer is no. Cancer and its treatments have side effects, some of them long term. I would push your doctors about the stomach pain. It could be there is still some infection in there. You might want to see another doctor.
      You have my sympathy on losing your husband. I lost my brother, my only close relative, to lung cancer two years ago.

      over 2 years ago
    • aracooper's Avatar
      aracooper

      To North Beach. Please tell your husband that he is not alone. I go through almost exactly what you are describing. I too used to be an avid reader often times reading one novel after another. Now I have trouble concentrating long enough or even comprehending a newspaper article. What used to take me minutes to learn now takes me days. I was an executive for a large company prior to being diagnosed with Stage IV Lymphoma. After chemo I expected to go back to work but unfortunately I have not been the same person since. I too feel stupid at times. I will never be as smart and as sharp as I used to be. I am not even funny anymore. I used to be funny and witty but I even lost that. It is difficult.

      over 2 years ago
    • Hees' Avatar
      Hees

      Aracooper...I can totally relate, it's been 2 years since I finished 6 rounds of Rchop. I have horrible aches in my knees and hips, can't run anymore, used to work out and run everyday. It has messed up my hormones and put me in and out of menopause, my eyesight has gotten worse, I'm depressed and my memory loss is the worse. It actually scares me at times because I feel like I don't remember the simplest things, I go to try to remember things and it's just a fog. It's horrible. I'm 45 and work 50 hours a week but when I get home I'm just exhausted, I can't do anything because I'm so tired and my joints ache. I used to come home and run 6 miles... this is so depressing, there are times I wish l would have died from the cancer, cuz I feel like every day is a strain...

      over 2 years ago
    • marie3kds' Avatar
      marie3kds

      Hees. I completely understand your frustration. I'm 35 and its been 1 yr since I completed the 6 rounds of R-Chop. I had Stage III mediastinal NHL. I too have memory loss. I have to write everything down! I can have a conversation and come away from it not remembering half of what was said. I started going to an exercise program to help combat my wight gain after chemo and I have the hardest time staying focused and remembering all the moves. I have terrible joint pain, especially in my knees, at times I can barley walk. I'm being checked for RA and arthritis to see if that's the cause. I didn't any problems with this prior to the chemo. My days always seem sooo long. When 3 o'clock hits I'm so exhausted, I can barley keep my eyes open. It Sucks! I hope as time goes on I will improve.

      over 2 years ago
    • aracooper's Avatar
      aracooper

      As much as it makes me feel better knowing that I am not alone, I am so sorry to both Hees and Marie3kids that you are experiencing similar effects from RCHOP. It has been 7 years for me and I am sorry to tell you that many of my symptoms have gotten worse instead of better. My hips are so bad, especially at nighttime. My brain has gotten worse, so bad that I get so frustrated so easily at the smallest things. Hees, when you said that you have wished sometimes that you had died of cancer please know that you are not alone. I used to feel the same way. It isn't always easy being a Cancer survivor. Sometimes I would like to punch some of those people at those relay for life events who look so happy! What is so good about having Cancer? I can't think of one single thing! When you survive Cancer and you are left still feeling sick and nobody really understands and they look at you and they think you should be celebrating the fact that you are in remission and what you really want is to feel how you felt before you ever heard the word Cancer. People don't understand how Cancer changes you. They just don't get it. Regardless of your outcome, once you have Cancer and you go through the experience of being a cancer patient, it changes you. PERIOD! End of story! People don't get it. XXX you don't even really get it for awhile! But it changes you.

      over 2 years ago
    • Hees' Avatar
      Hees

      I got so much support while I was going through chemo, which was wonderful and grateful for it...I don't think people understand and I didn't either before I had cancer. Going through chemo is hard I think the year after is harder... you are done with chemo and everyone thinks, yeah! You are better, cured...when you are left with a chemically damaged shell of a body that doesn't resemble what you were before. I feel like I have had to adjust my life which I hate! At first I said I am not going to give into this, I'm going to get my old self back!... 2 yrs later I realize that I don't think that is going to happen. I am a very determined person and there are thing I think I am just going to have to except, that is heartbreaking! I still do all I can do and appreciate every day because I am blessed, it could be so much worse. I hate talking about it to people because I don't want to seem like a winer or weak... thanks for the feedback and glad I'm not alone with my feelings. Prayers to all for a full recovery

      over 2 years ago
    • aracooper's Avatar
      aracooper

      Hees,
      Please, please, don't ever think that you are weak or a winer! Although I know exactly how you feel. You sound exactly how I did a few years ago. Then I had a wonderful sweet Doctor sit me down one day while I was at an appointment. I was seeing this particular doctor for the pain in my hips and spine. She diognosed me with Psoriatic Arthritis and linked it directly to my RCHOP Chemo. She even showed me medical studies showing that RCHOP can cause this and many other long term issues. She helped me to understand and to accept that I had a NEW NORMAL. The life I was used to was over. I needed to grieve that. So do you. It is okay. Remember, you are not your old self. That person no longer exist. Also remember that recovery is on your terms. You are not better until you say you are better. Somewhere in the cancer world the end of treatment meant the end of our illness. As patients we know that is not true. For many of us the side effects of the chemotherapy last for the rest of our lives.
      Hees, you went through XXX, I am so sorry that you had to get cancer, I am sorry that I got it too. It sucked and to be totally honest with you it ruined my life! But we have to find the positives, and there are positives, and we have to go on. If you ever need to talk please feel free to look me up on Facebook. I am a 56 year old grandma. You can find me at Anne McCartney Cooper on Facebook. I would love to gab more.

      over 2 years ago
    • Hees' Avatar
      Hees

      Thanks Anne! I friended you! Glad to have someone to talk to that knows what I'm talking about and doesn't think I'm crazy!

      over 2 years ago
    • Hilkei's Avatar
      Hilkei

      I am so thankful that I found this post. I was diagnosed from an abnormal mammogram on December 20, 2013 with Mantle Cell Lymphoma that had spread through my breasts, multiple organs and bone marrow, I had RCHOP for 6 months followed by 2 years of Rituxin.

      Some of the symptoms mentioned by others here are symptoms that I have. Neuropathy from the Chemo (but my doctor says absolutely not the Neuropathy must be caused by something else), lack of balance, pain and twitching in my legs, exhaustion most of the time, loss of memory, lack of ability to find the right word, stopping in the middle of a conversation to try to remember what I am discussing, etc.

      Also, and the reason I was searching for RCHOP side effects on the internet, I was just sick with a flu/cold, and had to miss work for almost two weeks in November (thank God one of the weeks was my Thanksgiving vacation), two weeks in December (thank God one of the weeks was my Christmas vacation), and today, January 31, 2017, I am feeling a cold/flu coming on again.

      I was discussing last week with my husband that I may never be the same again. He does all the laundry and cooking and cleaning, takes care of me and the entire apartment and the two cats and is so supportive and accepting it's amazing. I'm very lucky. But, I used to do a lot of those things, and I am sad that as I look at my future I'm not sure if some of my lost abilities and capabilities will ever come back. Before the cancer I did Zumba and other exercise classes three times a week, and walked 1.5 - 2 miles in the park a couple of other days a week. Now, I go to the park to walk and can only make 1/2 mile. And, it's painful. And, I get out of breath so easily now.

      Anyway, thanks for starting this post. And thanks for being here. I feel better just to know I am not alone.

      over 2 years ago
    • Mimmi's Avatar
      Mimmi

      I had RCHOP in 2015 for stage IV DLBCL. I often get aches in my arms and my coccyx is in such pain, I had to have coccyx manipulations, which has helped a little. I have been in remission since November 2015. I had a stool-test today and it came back inconclusive, so I have to redo it as they detected a bit of blood in the stool. I have been on a course of antibiotics after a sinus lift, so I got severe diarrehea from that medication. I am hoping now that the diarrehea caused some colitis and the bleeding ...I can't bear it if the lymphoma is back and is in the colon. My stool have always been super perfect and no stomach cramps; until I was given the antibiotics..I had diarrehea for 8 days..and itchy bum....

      about 2 years ago
    • myrding's Avatar
      myrding

      Hail to all heroes here,
      I came here to read what could await me... f 36, I just finished 6th RCHOP for a stageII mediastinal NHL, B-diffuse cells... some sidefx... beside hormonal heatwaves, some nausea, awful bone pain due to WBC raising injections, and feeling my belly just out of normal... and there was also the awful taste,- all this for 10 days after each chemo. I think it sounds like kitty cry beside of what you experience, though... I regret that I really had no choice, there were no sympthoms and chemo was the only solution to a tumor increasing 4 cm in size in 1 week... I hate those people who think we chose chemo just by being uninformed, and not because we REALLY need it, or else we die an awful death (which was my case).
      Still waiting for the first PET to be done, and I am so afraid I will no longer feel like myself after all this... if all it'd stay like now, I'd be even content... I'll be really happy to escape the pain you mention... did you feel it during treatments too? How soon did they start? Did you also have radio?
      I seriously think of suicide when I will be able to live only on painkillers...

      about 2 years ago
    • Schlegel's Avatar
      Schlegel

      myrding, please see a counselor and tell your doctor what symptoms you are experiencing. Things will get better. I had R-CHOP in 2005 and have lived a fairly full life since then including a mission trip to Armenia. Pain only when I broke my arm or had another non-cancer problem.

      about 2 years ago
    • Hilkei's Avatar
      Hilkei

      After reading the three more recent posts, I have to say I am feeling a bit better. Met with a neurologist who prescribed Pramipexole for Restless Leg Syndrome, which used to keep me up at night and prevent me from getting to sleep in the first place. I had it mildly pre-Cancer, and more severely post-Cancer. The pill has helped me in all aspects of life, because I'm getting some good sleep at night, I have more hope and a better outlook.

      I live in Florida where lately its been in the 90s and high humidity, so instead of the park, I "walk the supermarket" after work. Most days my Apple iPhone step counter tells me I'm doing over 3/4 mile!

      Now I just have to stay this way!

      about 2 years ago
    • myrding's Avatar
      myrding

      Schlegel, all they recommended was some Frontin (weak Xanax) for my pulse of 115... after 10 days it will be better, it always does, but I am so afraid this will return someday... maybe won't. Still in trouble deciding for radiation...

      about 2 years ago
    • aracooper's Avatar
      aracooper

      Thank you everyone for posting on this wall that I started back in 2015. To "myriding" and others, I want to emphasize a couple of things. R-CHOP is a vital cocktail of chemo drugs that I am very grateful for. Although I continue to suffer from life changing side effects from these drugs this is not the norm, and most people who are given this cocktail will not experience any side effects or just minimal side effects lasting a short period of time after receiving treatment. I was told by my oncologist that approximately 1/3 of patients who receive R-CHOP will have side effects and about 1/3 of those will have severe long term side effects. Unfortunately I fall into that catagory as do some of you. It has been 7 years since I was treated for Stage IV DLBCNHL and I still suffer from those side effects. If I had to do it all over again I would chose the same thing. I am alive! I have 3 Grandchildren that I get to play with and I have friends and family who love me. It has not been easy. I have gone through depression because my entire life changed due to these crazy side effects! I can no longer work so I had to give up a career that I loved. My doctors kept telling me that I had to get used to my "new normal". If I heard those words "new normal" one more time I was ready to punch someone! Because of the severe pain in my joints there were days that I literally could not walk, and I never knew when those days would come. I wouldn't know until I got out of bed in the morning and put my feet on the floor. That is when the severe pain in my lower spine would hit me and I would fall right back down into bed where I would be for the next 3 to 7, 8 maybe 10 days. This has gotten better and now only happens a couple times a year and only for a day or two. As far as my memory goes...well that has not gotten better at all. I still have a major problem with forgetting words in mid conversation. My memory is shot. i could go on and on but I won't. I had to learn to live with this so I did. I want everyone who is feeling these side effects to know that you are NOT ALONE! You are NOT CRAZY! What you are feeling is REAL! If your doctor tells you that he has never heard of anything like what you are feeling then he is lying to you or your doctor is extremely uninformed! My side effects continue to be serious enough that I qualify for Social Security Disability. If you are suffering you may want to see if you qualify as well. Please just ask your oncologist for help. Also feel free to ask me any questions and I will try to help if I can. Being a cancer survivor does not mean you should spend the rest of your life suffering.

      about 2 years ago
    • Mimmi's Avatar
      Mimmi

      My FOB test came back clear after two more testings, so not sure why the first FOB test was positive.? I have a bit of joint ache in my neck and arms, but not bad. I sometimes get the odd twinge and wonder what it is, but it passes..I guess its those nerve endings playing up. I did get neuropathy in feet and ankles, but I never notice it nowadays. I 'm use to it and never think about it. I exercise daily and walk 7000 steps a day. I had full hip replacement as well in August 2016. I am grateful for the R-CHOP, even though at the time it scared the XXX ot of me....LOL

      about 2 years ago
    • LVsopchoppy's Avatar
      LVsopchoppy

      First: ARACOOPER thank you for starting this thread. Found it because I wanted to understand what is still happening to my body.

      Second: I have never been one to ask for help or to reach out to others; so all of your posts were very helpful for my journey through this war.

      This post is really long but hopefully might help others.

      Three years after treatment R-Chops and radiation, I am still suffering with side effects. For a year and 1/2 my doctor has been trying to regulate my thyroid hormone levels. I thought all the issues I am having was due to my thyroid issues due to radiation on my neck and my hashimoto's disease.

      Now I realize (after reading these posts) most of the issues are from the R-Chops. Memory issues, loss of balance, painful joints, hips, legs, depression, itching, feet and hand burning. The fatigue really is troublesome for me because I was a go getter and always busy. Now by 2:00 I am done for the day and really have not accomplished much at all. I too can no longer work at a job that was high profile and very intense. My job was who I was... and now that is gone.

      Just some thoughts on what I have been doing to try to circumvent the side effects. Pretty inexpensive solutions too.

      I use Blu Emu (OTC) at night for my knee, hip, joint and back pain. I tease my hubby and tell him I wish I had a tub of it sometimes. But it actually helps. May not always last all night, but better then the throbbing pain that keeps me awake. I don't like pain killers and most make me itch all over.

      I have started on Curcumin 95 for an antioxidant, reduce inflammation and joint pain. It is starting to work as I am seeing less and less regular joint pain.

      Got on a good Probiotics and immune system support. I was sick all the time and couldn't leave the house due to others getting me sick (including my grandchildren). I found Dr. Mercola Complete probiotics has all the good strains you really need. I also take Kyolic aged garlic extract immune formula 103. I know my immune system regime is working because I have been able to hang out with my sick grandchildren without getting sick... and I mean up close with tons of hugs and kisses.

      I need to work on my depression and moodiness because the anger flares to easily and is not warranted. So that is next.

      I want it to stop and I want to be me again. No one really makes you understand the long term effects. If they did.. Hubby and I would have looked at solutions upfront for the effects as apposed to suffering unnecessarily.

      60 years old and sometimes feel like I am 90, but working on getting better .. one day and solution at a time.

      What I want to tell everyone is to fight. Find what works for you to get your through your day; and be kind to yourself. You fought a very intense war and you have not lost. You just have battles yet to fight.. Take them one at a time. Be grateful for what you have and can do.

      about 2 years ago
    • jand's Avatar
      jand

      So glad I found this thread as I was looking for answers for the long term effects of Rchop like so many others here. Boy can I relate to all of you! My doc who was recommended by my nurse daughter has also told me this is the new normal. I'm still not ready to accept that. It's been over a year since chemo ended, and the symptoms just seem to increase. I had stage 3b Bcell NHL and a carcinoid tumor in the lung at the same time. So surgery on the lung and rchop for lymphoma followed by another 6 months of rituxin alone.
      I went from feeling like a very healthy 40 year old to feeling like I'm 80. I feel a little deceived because the reality of the after effects was definitely not made known to me. And I feel that it is still very much downplayed. I was 67 when diagnosed, in very good health with no other health issues. I was told that I would be a good candidate for the rchop because of my good health other than the cancer.
      I would have chosen chemo anyway due to the aggressive nature of the cancer. I took a lot of flak from people wanting me to go all natural with them giving me examples of friends of friends that didn't do chemo. But there's 60 or so kinds of lymphoma alone with all different cures. I always tell them I do everything I know to do naturally and do what the doc says too.
      I have neuropathy now - actually had one foot not working at all and was being fitted for a foot brace for this "permanent" condition when it suddenly cleared up. Have the brain fog and search for words, usually descriptive type words, where I come up with a word that is similar, but not quite right, usually with a somewhat negative connotation compared with what I really want to say. An example would be that I once called a man a "womanizer" when a better description would be "charmer." I'm having big time issues pop up with knee and hip joints and am wondering if it is such a good idea to be walking for exercise or am I wearing out those joints? Immune system just doesn't seem to be working right with hand rashes, head congestion. I have the fatigue and am also done for the day by 2 pm. I get out of breath easily now and have no strength. Before chemo I had the strength and stamina of a healthy young woman.
      It is very tiring socializing and carrying on a conversation, so this all feels very isolating. I've been putting off a visit to see son and grandkids due to not feeling up to it. Been three years now since I've seen them.
      So anyway... I'm thankful for the health I had when I had it and that i'm still alive. But, yeah, there are days when I wonder if it was worth it.

      almost 2 years ago
    • MedievalMama's Avatar
      MedievalMama

      My husband is in remission from NHL for over a year. He still feels he is getting worse and worse. He has a number of symptoms which may or may not be from the RCHOP or side effects from the large amount of other drugs he's on to manage these symptoms.

      Have any of you had sinus or breathing issues or any dryness symptoms (dry mouth-so much that your teeth are degrading at an alarming rate, dry eyes, dry skin that cracks and bleeds despite drinking jugs of water.)?

      What things have you changed with your personal health that seem to help your symptoms? Nutrition, supplements, exercise, counseling, quitting smoking, discontinuing certain medications, etc.

      over 1 year ago
    • Mimmi's Avatar
      Mimmi

      I have severe muscle pain and feel at times as I have aged 10 years. I am 2.5 years in remission from DLBCL and had 6 rounds of R-CHOP in 2015.
      Last year I developed this arm pain. My oncologist says it has nothing to do with the chemo..???
      Tha's frustrating. I had normal arms before I got ill and before the poison... It's so bad at times that I can't lift a saucepan. I feel weak and feeble. I try to exercise but that doesn't seem to help either. I have severe neuropathy in both feet. At least I was sort of prepared for that. I've been tested for Rheumatoid arthritis and for Osteoarthritis and I suffer from neither. I believe my muscle fibers in both upper arms are damaged from chemo. What else can it be? It started one year after I finished chemo and I haven't done anything differently, injured my arms or whatever... My brain doesn't seem to work as well either. I am now quite forgetful...I have started to learn another language, to challenge myself and started to paint, but as my arms are so weak, that's become very difficult too

      I think the R-CHOP. and in particular, the R, ( "the red devil" as they call it) is the big culprit.
      I think all of us should set up a website and write about our experiences, and then show the doctors...as they seem not to understand....

      over 1 year ago
    • Lisa1062's Avatar
      Lisa1062

      I am 55 now. I have follicular non hodgkin and I received 6 rounds of r chop back in 2014. I too have pain in my knees and pain in my abdominal area. I just went for my 6 month checkup and doctor said I now have mild emphysema. I told him when I was going through treatment that I got out of breath going upstairs and he said nothing. I am very active and always have been. Yes I smoke k e but no where near what other people do. I am so upset.

      about 1 year ago
    • Meluno's Avatar
      Meluno

      I am on remission since dec of 2017 and had rcbop. I feel like I have a fourth of the energy I did before treatment. All I accomplish is work and sleep anymore. I am not depressed yet but I would like to jabe a life agian.

      10 months ago
    • Libbykraynick's Avatar
      Libbykraynick

      I am almost 4 years out on my last chemo appt. I have accepted that my new life of being exhausted every afternoon (body just shuts down), dry mouth (need to see the dentist every 3 months for a cleaning), anxiety, neuropathy in my feet, and always have lung infections. Does anyone else deal with these problems

      9 months ago
    • aracooper's Avatar
      aracooper

      It has been about a year since I have posted on this thread that I stared 4 years ago now. I am getting ready to go to my oncologist for my yearly checkup. My oncologist is a nationally recognized in the field of hematology..ie blood cancers. I like to share with him all of your issues as far as side effects to RCHOP. (no names of course) I just read portions of each of your post.
      I see since I last posted that several more of you have posted having similar issues with side effects that I and many others have dealt with from RCHOP. It has been over 8 years now for me and I still suffer. Although I am very fortunate that my oncologist has worked very closely with me and helped me every step of the way to insure that I get the help I need, I will never stop reminding him that there are many others out there going through the same thing. Other oncologist need to be educated as well.
      Another suggestion I have for getting the word out about RCHOP is What Next has many opportunities to be a part of different studies. I often get email invitations to be a part of studies that deal with my particular illness. If I feel like I may qualify I apply for the study. These studies pay quite well. I have made anywhere from $100 up to $250 per study and the longest they take is an hour. Of course you have to be 100% honest and with your answers then let them decide if you qualify. Then once I qualify that has been my opportunity to tell the people that are conducting the study about my side effects. What I am living with. They are always interested...always! often times that is the purpose of these studies...and they are done in the comfort of your own home. So next time you get an email from What’s Next please consider applying for a study...What do you have to lose?
      Wish me luck today at my yearly appointment. Feel free to ask me any questions about your side effects. Remember, you are NOT alone.

      8 months ago
    • JeanMarie's Avatar
      JeanMarie

      I completed R-CHOP for stage 1E DLBCL/primary thyroid lymphoma in October 2017. I am 52. I already was on an antidepressant, but have since had to go on a second one, as well as Xanax as anxiety has returned. Still have weakness and fatigue. Have started having hip pain at night. Lost my sense of smell. ENT doc said this was due to damage from chemo and is permanent. Has also affected taste. Have brain fog, memory problems, and also search for words. I am not the person I was and am trying to find ways to cope with my “new normal”.

      4 months ago
    • barbie1954's Avatar
      barbie1954

      I was diagnosed with Stage 4 NHL in 2011 and had what seems to be the standard treatment of R-CHOP every three weeks for 18 weeks. I had to have several blood transfusions too but thankfully no radiation. I will admit that I didn't do much research on R-CHOP because of the advanced stage I was in and I was told that the cancer was spreading fast. So much information was being thrown at me that I decided to put my faith in my oncologist (a wonderful doctor who just retired last year at the age of 82). PET scan April '12 was clear so I thought I was home free. In June of '12 I started having severe back pain. I was told the R-CHOP and cancer had weakened the vertebrae in my spine and two of them collapsed. Had to have rods and pins put in. I slightly turned my ankle just walking and broke it in two places. The next surgery was to correct a pinched nerve in my neck followed by a total right shoulder replacement in Feb 2019. Now 3 months post surgery my left arm is getting hard to lift so I need to see my doctor about that. It scares me to think of what's going to go wrong next. I have also had to deal with depression during this time as well as extreme fatigue (not to mention a nasty divorce after 32 years). Some days, like today, I'm just so tired and down that I decided to search for long term side effects of R-CHOP and found your thread. I am working full time because I have to since my ex decided the grass was greener somewhere else. I need my job for the money and almost as importantly, the insurance. In September I turn 65 so my goal is to try and keep working until then so I can go on Social Security and Medicare but there are days when I don't think I'm going to make it. I'm grateful that R-CHOP was able to save my life because otherwise I wouldn't have gotten to see my youngest daughter graduate from college and my beautiful grandchildren grow up. But I'm not going to lie - it's a struggle every day to get up . Cancer has taken away those "Golden Years" that I was supposed to be entering...

      2 months ago

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