Increased pain after 3rd round of chemo

Hello.

 

I was diagnosed with Burkitt's aggressive non-Hodgkin's lymphoma in November. I just completed my third round of R-EPOCH chemo a week ago. The fatigue increased this week which is OK. Now I have pain in my left shoulder, lower back, sciatic nerves,  rib cage, and in a swollen gland under my right arm (area near lymphoma growth). Is it normal to feel pain in different parts of your body after chemo has ended? I have not experienced this kind of pain before. Is it something to be expected?

I look forward to reading replies. Thank you.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited January 2021 #2
    Effects

    Sue,

    For most patients, the side-effects of chemo are cumulative; that is, they worsen over time as more infusions are given.  What do you mean after chemo has 'ended'?  It would be very odd for a patient to get only three infusions of R-EPOCH.  I suspect that you simply mean 'after an individual infusion has ended.'

    Your pain descriptions mostly sound orthopedic, and yes, that could be a result of the chemo.  Flu-like feeling with constant muscle aches are pretty routine with some of the drugs you are receiving.  This is known, simply enough, as 'Flu-like Syndrome.'   I am not saying that is what you necessarily have, but virtually anything as regards pain is possible on this stuff.  Some of the drugs also cause neutropenia, which is low WBCs, and this is treated with neulasta for most patients, and it can cause severe bone pain, especially in someone who has pre-existing arthritis or bone fractures.  Neulasta is given as an injection in the tummy, and if you are getting these shots, the ortho pain would make sense. Tell your doctor abut these issues.

  • SL3582
    SL3582 Member Posts: 4
    edited January 2021 #3

    Effects

    Sue,

    For most patients, the side-effects of chemo are cumulative; that is, they worsen over time as more infusions are given.  What do you mean after chemo has 'ended'?  It would be very odd for a patient to get only three infusions of R-EPOCH.  I suspect that you simply mean 'after an individual infusion has ended.'

    Your pain descriptions mostly sound orthopedic, and yes, that could be a result of the chemo.  Flu-like feeling with constant muscle aches are pretty routine with some of the drugs you are receiving.  This is known, simply enough, as 'Flu-like Syndrome.'   I am not saying that is what you necessarily have, but virtually anything as regards pain is possible on this stuff.  Some of the drugs also cause neutropenia, which is low WBCs, and this is treated with neulasta for most patients, and it can cause severe bone pain, especially in someone who has pre-existing arthritis or bone fractures.  Neulasta is given as an injection in the tummy, and if you are getting these shots, the ortho pain would make sense. Tell your doctor abut these issues.

    Thank you, Max

    Thank you for your response. Yes, I meant after an individual session of chemo. I don't think it's due to the Newlastin since I received that a week ago and seem to tolerate it OK. As long as I take Claritin the bone pain is tolerable. This pain, on the other hand, definitely feels like flu like symptoms of intense aching over most of my body.
    I'm coming up on the week before another round of chemo. Supposedly this is the week when I usually feel good, I'm disappointed that that's not going to happen. Oh Lord, I have at least three more sessions of chemo, this is gonna be a bumpy ride.

    Thank you again for your quick response.

    Sue

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    SL3582 said:

    Thank you, Max

    Thank you for your response. Yes, I meant after an individual session of chemo. I don't think it's due to the Newlastin since I received that a week ago and seem to tolerate it OK. As long as I take Claritin the bone pain is tolerable. This pain, on the other hand, definitely feels like flu like symptoms of intense aching over most of my body.
    I'm coming up on the week before another round of chemo. Supposedly this is the week when I usually feel good, I'm disappointed that that's not going to happen. Oh Lord, I have at least three more sessions of chemo, this is gonna be a bumpy ride.

    Thank you again for your quick response.

    Sue

     

    Flu-like Syndrome

    I had this for about three months......   At least three of the drugs in R-EPOCH are listed as occasional cause for FLS.

    Highlight the whole link, then RIGHT-click, then left click "Go to http........."

     

    https://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

  • SL3582
    SL3582 Member Posts: 4
    edited January 2021 #5

    Flu-like Syndrome

    I had this for about three months......   At least three of the drugs in R-EPOCH are listed as occasional cause for FLS.

    Highlight the whole link, then RIGHT-click, then left click "Go to http........."

     

    https://chemocare.com/chemotherapy/side-effects/flulike-syndrome.aspx

    Thank you for the link

    Wow! That must've been difficult.
    Thank you for the link, Max.

    From what you wrote it sounds like you have completed your treatment plan? How are you doing?

     

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    SL3582 said:

    Thank you for the link

    Wow! That must've been difficult.
    Thank you for the link, Max.

    From what you wrote it sounds like you have completed your treatment plan? How are you doing?

     

     

    "Me"

    Yes Sue, I finished 6 months of R-ABVD in 2010.   I then had prostate cancer in 2014-15, which appears to be cured via surgery.   And I am now being monitored for a rare, odd condition that is benign but associated with the type of HL that I had before.  So, at present, I am (as best we can tell from the scans) cancer free.  And very thankful.

  • SL3582
    SL3582 Member Posts: 4
    edited January 2021 #7

    "Me"

    Yes Sue, I finished 6 months of R-ABVD in 2010.   I then had prostate cancer in 2014-15, which appears to be cured via surgery.   And I am now being monitored for a rare, odd condition that is benign but associated with the type of HL that I had before.  So, at present, I am (as best we can tell from the scans) cancer free.  And very thankful.

    Prayers for continued good health

    I appreciate you taking time to answer my questions provide insight into my issue. I wish you the best of luck and pray for your good health.

    Smile Sue

  • EllenChristian
    EllenChristian Member Posts: 4 Member

    Hello - I am newly diagnosed with Diffuse Large B cell Non Hodgkins lymphoma and have completed round one IP stay @ 6 days R-EPOCH and am feeling the same symptoms as you now week 3. I am starting round 2 on Dec 22,21. The Mass is in my abdomen and over to the right side near the gallbladder - it is tough. I will say that God has really been here for me (my husband and I) as we journey down this path. You can reach out to me anytime and we can share our journey together.

  • Unbreakable1
    Unbreakable1 Member Posts: 14 Member

    Hi Ellen, how did round 2 go for you? If you have any questions, please feel free to reach out. I have finished 6 rounds of R-EPOCH. I have Primary Mediastinal B-cell Non-Hodgkins Lymphoma. I have not had any treatmetns since then, but I am still not told I am in remission yet. My mass was huge, but it did shrink significantly and most patients don't need additional treatment. I am still getting CT and PET scans and it seems it is still shrinking. At the largest, my mass was 11 cm x 13.3 cm (4"x5") in my chest. Now it is 4.5 cm x 2.8 cm (1.7" x 1.1"). My mass was shrinking during chemo, but towards the end of treatment, it wasn't shrinking as much as my Dr wanted it to and he freaked me out saying he thinks I may need a stem cell transplant and or radiation. After completion of 6 treatments, I was sent to a specialist and was told its highly unlikely that I need a transplant. These things continue to shrink over time and it may just be residual tissue. A biopsy to see if it is still cancerous wont be done unless the mass was growing because it is in my chest and would be an invasive procedure. But I still continue to test and looks like it is still shrinking and my lab results look good. As far as chemo went, after my first was the hardest. It got better after and you figure out what works for you. Good luck on your journey. One important thing is staying positive and not looking at yourself like a victim or feeling sorry for yourself. I was able to to take care of myself and did not need much assistance from my BF. I had a huge support system. I still went to work in between chemo treatments, ran little errands, cleaned the house and tried to be as normal as possible (but still be safe due to covid).

  • dousal52
    dousal52 Member Posts: 1 *

    I have NHL plus RA and after my 3rd chemo treatment decided to stop altogether. My RA pain went through the roof and has not gotten any better after 16 months. Have just been doing bloodwork every 3 months, never goes away and I am taking Tramadol and Hydrocodone which sometimes allows me to get 4 hrs of sleep at nite.