• 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
    • 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.

      10 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”.

      6 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...

      4 months ago

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