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Increasing pain and lack of mobility

Bill1958's picture
Bill1958
Posts: 66
Joined: Feb 2018

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.

yesyes2
Posts: 591
Joined: Jul 2009

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.

Evarista
Posts: 274
Joined: May 2017

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.

Bill1958's picture
Bill1958
Posts: 66
Joined: Feb 2018

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!  

po18guy
Posts: 1044
Joined: Nov 2011

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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
Posts: 591
Joined: Jul 2009

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

What is the frequency of your R infusions for RA?

yesyes2
Posts: 591
Joined: Jul 2009

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.

 

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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.

Bill1958's picture
Bill1958
Posts: 66
Joined: Feb 2018

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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.

illead's picture
illead
Posts: 852
Joined: Aug 2012

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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

illead's picture
illead
Posts: 852
Joined: Aug 2012

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

thanks for the info!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

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's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

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

illead's picture
illead
Posts: 852
Joined: Aug 2012

Bill or I cannot remember anything at all about the study on viruses.  It's quite interesting but like you I'm a little skeptical but who knows, I wouldn't discount anything.  Perhaps they felt it was a bit much for us to take in and maybe a little hush hush.  I like all of us touched by cancer are glad they are seemingly leaving not many stones unturned.

Becky

lindary's picture
lindary
Posts: 679
Joined: Mar 2015

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. 

Bill1958's picture
Bill1958
Posts: 66
Joined: Feb 2018

Hi everybody!  Just wanted to share how I made out and hopefully others can have less stress if they go through my events.  Went on steroids(80 MG, to 40 to 20).  It worked. The problems stopped within 2 hours of taking the steroid(Predisone).  Pretty much, as folks thought here, my immune response was enhanced and causing pain and imobility.  My Doc says it can come and go or not come and go.  But today I am moving well.  

 

Evarista
Posts: 274
Joined: May 2017

This is great to hear, Bill.  

ShadyGuy's picture
ShadyGuy
Posts: 455
Joined: Jan 2017

My Dr. called the tapered doses of prednisolone "zip packs". I am not sure why. They are temporary but they helped me a lot! Glad you got the help you needed. Now go out and raise hell while you are feeling better! "Freedom and Whisky Gang Thegither"

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3365
Joined: May 2012

Bill I'm delighted with how the Prednisone has worked.   

I didn't think to mention it above, but for back pain I use Salonpas pads.   Work great on my broken back (T-9), two collapsed vertebrae, trauma-induced scoliosis, and trauma-induced kyphotic deformity.  Severe arthritis from the lumbar to the base of the skull.   Normally I only have flares in one area at a time, so one larger pad does the job.  O.T.C., no perscription necessary.  The patch applies a topical, which I guess is similiar to Ben Gay or Icy Hot, but for me the Salonpas works much better than those other products.

Of course these pads are not the solution for systemic pain all over the body, but if you have a severe issue in just one area, they might work well for you also.  I doubt that they have any interaction with Prednisone, but ask your doc beforehand to make sure,

max

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