Increasing pain and lack of mobility

Hi guys.  Hoping for some inspiration.  I am one year and a couple months out of RCHOP x 6 with MTX X 4 for stage 4 dlbcl.  Achieved remission.  My issue is the following:  My shoulders, knee, both wrists and several other places are in constant pain.  I have gone from jogging, hiking, bike riding to just being able to walk with a limp.  I went to my PC who is treating me for lyme desease as I have been bitten by several ticks.  I don't think it is lyme desease that is bothereing me however.  The symptoms come and go but are terrible without tylenol or other pain pills.  Also the neuropathy is getting worse in my feet and hands by times 2 or more.  I wonder if others have gone through this, I wonder if I may be having a relapse, I wondr if it's a bone concer.  The pain at times is a ten!  Man oh man this really is sucking folks to put it mlidly.

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Comments

  • yesyes2
    yesyes2 Member Posts: 591
    New Pain.

    Hi Bill,  I'm so sorry to hear that you are having new issues which are causing you severe pain.  I doubt that it is a recurrance as these would be unusual symptoms.  Makes me think it's some type of arthriitis.  Pain from arthritis can be very severe and some can be caused by specific chemo agents.  Has your PA tested you for RA?  If you are experiencing pain and swelling on both sides of the body that certainly could be a possibility.  There are specific blood tests that your doctor could run to limit the possibilities.  Good luck in finding out what is going on.

  • Bill1958
    Bill1958 Member Posts: 67
    Evarista said:

    Not as bad, but some issues

    Hi Bill.  So sorry that you are experiencing this, especially at a time when things should be getting better.

    I "flared" with excrutiating joint issues about 4 - 5 months after finishing my R-EPOCH, in spite of doing nothing to aggravate them.  Referral to Ortho, MRI's, Physical Therapy, etc. Two years later, I am seeing improvement but it has been slow.  I have seen similar complaints of joint issues in this and other forums. Never gotten a good explanation, but feel that these things must somehow be related to the resurrection, if you will, of my immune system.  Kind of a self-re-education project on it's part:  "Oh...That's you?  Sorry for attacking."   In the meantime, gentle appropriate exercise under the guidance of a good physical therapist might help.  Along with a workup for RA as YY suggests.

    A note about increased neuropathy difficulty because you also mention a lot of physical activity:  I have found that increased neuropathy goes hand-in-glove with fatigue.  My neuropathy is almost nil as long as I manage my fatigue but quickly accelerates if I do too much or let myself get tired.  So, excercise = good, but too much exercise = worse symptoms.  You have to find your personal "set point".  Periodically, I push the limit on mine to see if I can adjust to more activity and am happy to report that it continues to increase.  If you have access to a super-clean swimming pool and your doc says OK, that might be a better form of exercise for you right now. Hang in there.

    Thanks for responses

    Thank you yes yes and Evarista.  I have been fighting this "set-back" for about 3 months now.  Your words have helped me and posting this has helped me get off the "pitty pot" and tackle this problem with zest and try to get rid of thoughts of relapse.  Great advice!  

  • Evarista
    Evarista Member Posts: 332 Member
    Not as bad, but some issues

    Hi Bill.  So sorry that you are experiencing this, especially at a time when things should be getting better.

    I "flared" with excrutiating joint issues about 4 - 5 months after finishing my R-EPOCH, in spite of doing nothing to aggravate them.  Referral to Ortho, MRI's, Physical Therapy, etc. Two years later, I am seeing improvement but it has been slow.  I have seen similar complaints of joint issues in this and other forums. Never gotten a good explanation, but feel that these things must somehow be related to the resurrection, if you will, of my immune system.  Kind of a self-re-education project on it's part:  "Oh...That's you?  Sorry for attacking."   In the meantime, gentle appropriate exercise under the guidance of a good physical therapist might help.  Along with a workup for RA as YY suggests.

    A note about increased neuropathy difficulty because you also mention a lot of physical activity:  I have found that increased neuropathy goes hand-in-glove with fatigue.  My neuropathy is almost nil as long as I manage my fatigue but quickly accelerates if I do too much or let myself get tired.  So, excercise = good, but too much exercise = worse symptoms.  You have to find your personal "set point".  Periodically, I push the limit on mine to see if I can adjust to more activity and am happy to report that it continues to increase.  If you have access to a super-clean swimming pool and your doc says OK, that might be a better form of exercise for you right now. Hang in there.

  • po18guy
    po18guy Member Posts: 1,297 Member
    Autoimmune?

    Have you had the autoimmune dusease panels run on your blood? Your immune system took a huge hit via the treatment you have received. That recovering immune system can over-react and begin to attack your healthy tissues, including the jounts and nerves. 

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    po18guy said:

    Autoimmune?

    Have you had the autoimmune dusease panels run on your blood? Your immune system took a huge hit via the treatment you have received. That recovering immune system can over-react and begin to attack your healthy tissues, including the jounts and nerves. 

    Po is correct ..

    on this point and that is exactly what happened to me on this last relapse. I ended my R maintenance and the serious chronic infections I  had been experiencing went away. But within 3 months other autimmune conditions started to manifest - severe knee pains, leg pain, weakness, ankle pains, sciatica, back pain and worst of all I developed psoriasis which was diagnosed as psoriatic arthritis, a serious autoimmune disease. I seems the R was keeping these conditions in check. They are all caused by rogue white blood cells, exactly what R kills. You may want to see a rheumatologist. I am not saying this is your diagnosis but you may want to ask about it. The knee pain and weak legs are terrible. I still was able to get 2 deer out of the woods during muzzle loader season. Don't give up. Fight it and most of all stay active. Don't over exert but keep moving.

  • yesyes2
    yesyes2 Member Posts: 591
    ShadyGuy said:

    Po is correct ..

    on this point and that is exactly what happened to me on this last relapse. I ended my R maintenance and the serious chronic infections I  had been experiencing went away. But within 3 months other autimmune conditions started to manifest - severe knee pains, leg pain, weakness, ankle pains, sciatica, back pain and worst of all I developed psoriasis which was diagnosed as psoriatic arthritis, a serious autoimmune disease. I seems the R was keeping these conditions in check. They are all caused by rogue white blood cells, exactly what R kills. You may want to see a rheumatologist. I am not saying this is your diagnosis but you may want to ask about it. The knee pain and weak legs are terrible. I still was able to get 2 deer out of the woods during muzzle loader season. Don't give up. Fight it and most of all stay active. Don't over exert but keep moving.

    ShadyGuy, sorry about the

    ShadyGuy, sorry about the Psoriatic arthritis diagnosis.  May I ask what treatment you are receiving for it.  I believe most of the treatments are biiologic drugs which seem to all carry lymphoma warnings.  I've been on Rituxan for the last 12 years to treat my RA and I also have Psoriasis and a host of other auto immune diseases and cancers.  The treatment for a lot of them are all the same drugs which attack the rogue white blood cells.

     

     

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    yesyes2 said:

    ShadyGuy, sorry about the

    ShadyGuy, sorry about the Psoriatic arthritis diagnosis.  May I ask what treatment you are receiving for it.  I believe most of the treatments are biiologic drugs which seem to all carry lymphoma warnings.  I've been on Rituxan for the last 12 years to treat my RA and I also have Psoriasis and a host of other auto immune diseases and cancers.  The treatment for a lot of them are all the same drugs which attack the rogue white blood cells.

     

     

    Nothing yet

    The arthritis Dr. ordered a whole series of extra MRIs and X-rays. Just too many in my opinion so I declined. I am using steroid lotions and creams and will have the scans combined with my cancer scans and x-rays when I go to the cancer center in January, hoping to avoid excess x-ray exposure. For now I use steroid creams and lotions. It started on my arms but that has cleared up pretty well. The worst is on my legs. Fornutely not visible to others. Its hard to look at. I can live with the psoriasis but rhe joint and muscle pain sometimes make me wonder if the struggle is worth it. I expect to go back on R. Thanks for your concern.

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    yesyes2 said:

    ShadyGuy, sorry about the

    ShadyGuy, sorry about the Psoriatic arthritis diagnosis.  May I ask what treatment you are receiving for it.  I believe most of the treatments are biiologic drugs which seem to all carry lymphoma warnings.  I've been on Rituxan for the last 12 years to treat my RA and I also have Psoriasis and a host of other auto immune diseases and cancers.  The treatment for a lot of them are all the same drugs which attack the rogue white blood cells.

     

     

    RA treatment

    What is the frequency of your R infusions for RA?

  • Bill1958
    Bill1958 Member Posts: 67
    ShadyGuy said:

    Po is correct ..

    on this point and that is exactly what happened to me on this last relapse. I ended my R maintenance and the serious chronic infections I  had been experiencing went away. But within 3 months other autimmune conditions started to manifest - severe knee pains, leg pain, weakness, ankle pains, sciatica, back pain and worst of all I developed psoriasis which was diagnosed as psoriatic arthritis, a serious autoimmune disease. I seems the R was keeping these conditions in check. They are all caused by rogue white blood cells, exactly what R kills. You may want to see a rheumatologist. I am not saying this is your diagnosis but you may want to ask about it. The knee pain and weak legs are terrible. I still was able to get 2 deer out of the woods during muzzle loader season. Don't give up. Fight it and most of all stay active. Don't over exert but keep moving.

    On my best path thanks to this group

    Thanks Po and Shadyguy.  In all seriousness; both of you folks always get me feeling better(motivated) to tackle issues like this and more.  I am being treated and tested for both lyme disease and rhemeurtoid athritis.  Starting doxycycline(strong antibiotic) for lyme, blood work for lyme and rhemeortoid arthritis and a couple other metabolic reasons, and starting hydroxychloroquine for pain and treatment for both lyme and arthritis.  I have had 7 tics removed in the last couple months(I hike a lot in the woods when I can) and hence the dx for lyme.  Thanks again and I see that others have gone through this and much worse too and I'm sorry because this stuff is real.

  • yesyes2
    yesyes2 Member Posts: 591
    ShadyGuy said:

    RA treatment

    What is the frequency of your R infusions for RA?

    RA Treatment

    I receive rituxan 4 times a year, the dosage for all is not based on BMI but a straight 1,000.  Dosage is first dose followed 2 weeks later with a second dose, and 6 months later repeat.  The only down side is because of the 6 month lapse your infusions are the all day afairs.  Good luck in figuring out what to do.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Bill1958 said:

    On my best path thanks to this group

    Thanks Po and Shadyguy.  In all seriousness; both of you folks always get me feeling better(motivated) to tackle issues like this and more.  I am being treated and tested for both lyme disease and rhemeurtoid athritis.  Starting doxycycline(strong antibiotic) for lyme, blood work for lyme and rhemeortoid arthritis and a couple other metabolic reasons, and starting hydroxychloroquine for pain and treatment for both lyme and arthritis.  I have had 7 tics removed in the last couple months(I hike a lot in the woods when I can) and hence the dx for lyme.  Thanks again and I see that others have gone through this and much worse too and I'm sorry because this stuff is real.

    Pain

    Good luck in your effort to diagnose/overcome pain.   As some have mentioned, there is some sort of mysterious link between Rituxan, rheumatoid arthritis, and the lymphomas.  Ironically, Rituxan and some of the other monoclonal antibodies ("....mab" drugs) are a favorite treatment for R.A., although they carry warnings for causing joint problems, or even Lymphoma.  I had a condition known as 'flu-like syndrom' most of my six months on R-ABVD.   There is no telling what is causing your pain, but my first guess is in fact the chemo.   As Po suggested, it could be an autoimmune after-effect.  When, or if, it will end, no one knows or can predict.  

    I had severe neuropathy during treatment, and significant neuropathy since (ten years now).  Most people eventually evolve out of neuropathy, like most other side-effects, but some do not.  Doctors cannot say why this is, or predict it.  I do notice distinct worsening of neuropathy after exertion or physical work, such as I perform in the yard.  Lots of outside work leaves both hands and feet buzzing for some time.

    Rituxan as been a blessing in fighting indolent lymphomas, but a mixed one.   Do get a definitive answer regarding the Lyme Disease, since it is a killer.

    Your initial post does not sound at all like a relapse or bone cancer to me.  Bone cancer showing so fast after total remission from NHL would be extremely odd and unusual.

    And finally, be careful of liver enzyme effects from OTC pain killers. Tylenol is the worse, but large amounts of long-term Ibuprofin can also cause some liver damage.  Asprin does not damage the liver, but you must be careful to avoid ulcerations in the stomach.

    Good luck to you, and I know many are glad to hear from you again,

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    yesyes2 said:

    RA Treatment

    I receive rituxan 4 times a year, the dosage for all is not based on BMI but a straight 1,000.  Dosage is first dose followed 2 weeks later with a second dose, and 6 months later repeat.  The only down side is because of the 6 month lapse your infusions are the all day afairs.  Good luck in figuring out what to do.

     

    R Maintenance

    mine has always been R with each round of chemo then maintenance once every 8 weeks for a minimum of 2 years. First round maintenance was every 8 weeks for 2 1/2 years.

  • illead
    illead Member Posts: 880 Member
    Interesting

    My Bill has suffered from an extreme chronic sinus infection for at least over a year1/2.  We figure it is mostly due to rituxan and unable to fight it well because of low WBC.  He does nasal rinses regularly and has been on 3 different antibiotics and nothing has helped.  A few weeks ago he was feeling pretty bad and his chest was rattling, his PCP was out of the ofc so his nurse told him to go to emergency for a chest xray.  It came out clear but the doc there gave him a prescription for an antibiotic that he said was especially for respiratory.  The last day of taking it he started to feel better so he called the pharmacist who said he should get right back on it before he becomes immune to it, so his doctor refilled it.   He is feeling much better than he has since getting the infection.  The antibiotic is doxycycline, how interesting that it is used for Lyme disease. So sorry for all you have been through and Shady, Po, yesyes, and everyone, keep hanging in there!

    Becky

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    illead said:

    Interesting

    My Bill has suffered from an extreme chronic sinus infection for at least over a year1/2.  We figure it is mostly due to rituxan and unable to fight it well because of low WBC.  He does nasal rinses regularly and has been on 3 different antibiotics and nothing has helped.  A few weeks ago he was feeling pretty bad and his chest was rattling, his PCP was out of the ofc so his nurse told him to go to emergency for a chest xray.  It came out clear but the doc there gave him a prescription for an antibiotic that he said was especially for respiratory.  The last day of taking it he started to feel better so he called the pharmacist who said he should get right back on it before he becomes immune to it, so his doctor refilled it.   He is feeling much better than he has since getting the infection.  The antibiotic is doxycycline, how interesting that it is used for Lyme disease. So sorry for all you have been through and Shady, Po, yesyes, and everyone, keep hanging in there!

    Becky

    conference

    Any feedback on the conference you attended in Redondo? was itvworthwhile

  • illead
    illead Member Posts: 880 Member
    edited November 2019 #16
    ShadyGuy said:

    conference

    Any feedback on the conference you attended in Redondo? was itvworthwhile

    Conference

    I've been meaning to post.  Yes, the conference was very good, the first part was mostly basic info and of course we had our ears open for MCL.  I tried to take notes but they either talked so fast or had accents, so it was a little hard but the breakout sessions pinpointed each type.  I learned more about staging which I know has been commented on before, but simply, staging is done to suggest appropriate treatment, Stage 1 - one area affected by lymph nodes,  2 - 2 areas affected, 3 - 3 areas affected and stage 4 - anything not a lymph node, i.e. spleen, blood etc. The breakout session was really beneficial but maybe more so with MCL because there is so much going on with research and so many new promising therapies and target drugs, in fact a new one was just released the other day after the conference (they never even spoke about the drug there).  The speaker in our breakout session was Dr Budde at City of Hope, she specializes in MCL.  It also was a little difficult as she spoke fast and had an accent.  She was very excited about a new trial that only City of Hope is allowed to run, it is Car-T along with a target drug that was also recently released.  So we are very glad that we went and we are so encouraged knowing that interest and research has not slowed down.  We would go again, we were not disappointed.

    Becky

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    Bill1958 said:

    On my best path thanks to this group

    Thanks Po and Shadyguy.  In all seriousness; both of you folks always get me feeling better(motivated) to tackle issues like this and more.  I am being treated and tested for both lyme disease and rhemeurtoid athritis.  Starting doxycycline(strong antibiotic) for lyme, blood work for lyme and rhemeortoid arthritis and a couple other metabolic reasons, and starting hydroxychloroquine for pain and treatment for both lyme and arthritis.  I have had 7 tics removed in the last couple months(I hike a lot in the woods when I can) and hence the dx for lyme.  Thanks again and I see that others have gone through this and much worse too and I'm sorry because this stuff is real.

    Lyme

    The county I live in has the highest incidence of Lyme disease in US. My wifes family lived on farms and practically all of them had it. Lyme was often misdiagnosed as gout. Gout has many of the same symptoms as RA and lyme disease mirrors them. It's a serious disease but diagnosis and treatment have come a long way since the times when most doctors failed to recognize it. Surprisingly the VA is good at treating it and my brother-in-law was treated sucessfully at some large VA hospital, not sure where, in west Virginia. Good luck. Once successfully diagnosed lyme disease can be cured.

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    illead said:

    Conference

    I've been meaning to post.  Yes, the conference was very good, the first part was mostly basic info and of course we had our ears open for MCL.  I tried to take notes but they either talked so fast or had accents, so it was a little hard but the breakout sessions pinpointed each type.  I learned more about staging which I know has been commented on before, but simply, staging is done to suggest appropriate treatment, Stage 1 - one area affected by lymph nodes,  2 - 2 areas affected, 3 - 3 areas affected and stage 4 - anything not a lymph node, i.e. spleen, blood etc. The breakout session was really beneficial but maybe more so with MCL because there is so much going on with research and so many new promising therapies and target drugs, in fact a new one was just released the other day after the conference (they never even spoke about the drug there).  The speaker in our breakout session was Dr Budde at City of Hope, she specializes in MCL.  It also was a little difficult as she spoke fast and had an accent.  She was very excited about a new trial that only City of Hope is allowed to run, it is Car-T along with a target drug that was also recently released.  So we are very glad that we went and we are so encouraged knowing that interest and research has not slowed down.  We would go again, we were not disappointed.

    Becky

    wonderful!

    thanks for the info!

  • lindary
    lindary Member Posts: 711 Member
    conference

    I've been to a few conferences in the Chgo area and found them to be very informative. Thak you for the bit on staging. So many are familar with staging for organ cancers it is hard to explain the difference with lymphoma. I am glad to hear it was worth going to. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    illead said:

    Conference

    I've been meaning to post.  Yes, the conference was very good, the first part was mostly basic info and of course we had our ears open for MCL.  I tried to take notes but they either talked so fast or had accents, so it was a little hard but the breakout sessions pinpointed each type.  I learned more about staging which I know has been commented on before, but simply, staging is done to suggest appropriate treatment, Stage 1 - one area affected by lymph nodes,  2 - 2 areas affected, 3 - 3 areas affected and stage 4 - anything not a lymph node, i.e. spleen, blood etc. The breakout session was really beneficial but maybe more so with MCL because there is so much going on with research and so many new promising therapies and target drugs, in fact a new one was just released the other day after the conference (they never even spoke about the drug there).  The speaker in our breakout session was Dr Budde at City of Hope, she specializes in MCL.  It also was a little difficult as she spoke fast and had an accent.  She was very excited about a new trial that only City of Hope is allowed to run, it is Car-T along with a target drug that was also recently released.  So we are very glad that we went and we are so encouraged knowing that interest and research has not slowed down.  We would go again, we were not disappointed.

    Becky

    CofH

    City of Hope (Los Angeles) had a leading role in the development and certification of Rituxan, synthetic insulin, and human growth hormone, as well as other leading cancer drugs.  They are among the very best of the best with complex or rare lymphomas.

     

  • ShadyGuy
    ShadyGuy Member Posts: 782 Member
    illead said:

    Conference

    I've been meaning to post.  Yes, the conference was very good, the first part was mostly basic info and of course we had our ears open for MCL.  I tried to take notes but they either talked so fast or had accents, so it was a little hard but the breakout sessions pinpointed each type.  I learned more about staging which I know has been commented on before, but simply, staging is done to suggest appropriate treatment, Stage 1 - one area affected by lymph nodes,  2 - 2 areas affected, 3 - 3 areas affected and stage 4 - anything not a lymph node, i.e. spleen, blood etc. The breakout session was really beneficial but maybe more so with MCL because there is so much going on with research and so many new promising therapies and target drugs, in fact a new one was just released the other day after the conference (they never even spoke about the drug there).  The speaker in our breakout session was Dr Budde at City of Hope, she specializes in MCL.  It also was a little difficult as she spoke fast and had an accent.  She was very excited about a new trial that only City of Hope is allowed to run, it is Car-T along with a target drug that was also recently released.  So we are very glad that we went and we are so encouraged knowing that interest and research has not slowed down.  We would go again, we were not disappointed.

    Becky

    is this what ...

    Dr. Budd from City of Hope was talking about? I am a bit skeptical but hoping for the best with this one. The video is long but well worth watching. The Dr doing the research is at City of Hope.

    https://www.youtube.com/watch?v=b6nmOQ6PsBM