← Return to Severe bone and Joint pain chronic after long term chemotherapy

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Thank you so much for your reply and thoughts.
When I would have Chemo for an 8 hour day, mind you this was every other week for over a year and several months, I was given a terminal dx and that still looms over my head,, as I was NOT supposed to live much longer after the cancer was found in the colon. It is a very rare cancer.. Not colon cancer , lung cancer in the colon,. so many ignorant Drs.. do not believe that is possible and I should not be here., but I am and I keep finding these things I handle myself ,, I tell the Drs things I need... so my Dr . pushed me with the chemo until one day I just stopped... The chemo would go straight to my bones, mostly my legs and shoulders, I would have 3 heating pads going at the same time.. cocktails of pain and nerve meds that really didn;t help much,.. I just did what I had to do and knew by the end of the week I would have a day or 2 of feeling better only to do it all over again... Over the years since I stopped I have had many more surgeries, each one taking a toll ,. so many scans, cts, petscans, Mri's so much radiation,.,, I did have cervical surgery in 2020 I think,, 3 level disk replacement,, I started there before the back as all these Drs wanted to put poles and cages etc in my spine,, surgeries would be 10 hours with a 6 month re coup time. I cant take that kind of time anymore , as I said I run 2 full time businesses with no back up.. I let my other businesses go when I first got the cancer ,I am not going down that road again,. My lower back is excruciating.. Mostly on the right side.., the sciatica at times becomes so bad I grab my legs and stretch and massage... When I had the laminectomy he also put some nuts and bolts in me so I really do not know what is going on right now.. s=hence the new MRI.. I am waiting to have... Only one open MRI in this city so I wait,, I also am waiting on a CT of the Abdominal wall as they suspect I have a flank or lumbar hernia that goes around my waist to the spine.. I am very tall and thin, so when all of a sudden I develop this bulge on my waist and it goes around to the back .. Which is very large and prominent.. and apparently happens with people who have had lumbar surgery,, I can press the center and feel it in the middle of my abdomen.. I also have several hernias , painful ones in my abdomen that happens when the mesh that was put in to keep my intestines together after colon surgery comes apart it causes the hernia. I have already one replaced and it was horrific.. I am not sure if this Abdominal one is an extension of the others?? I am my own advocate and sadly I find my own issues and tell the Drs what I need.. medical is not good with the exception of a few good surgeons I have.. My pain is everywhere, my wrists, fingers, shoulders, the neck now is at night and I still wear the brace , but during the day I am ok.. NOT OK with the spine... I have to squat as much as I can rather than bend so I think one of my knees is on its way out... I thought perhaps I surely had rheumatoid Arthritis Dr took test ..NO , I did have orders for a bone density scan I forgot about .. last time years ago it was pre osteoporosis.. Yet i asked my Dr about the bone shots to prevent bone damage I recall my Mother getting at my age and went way over her head... I felt a lot better going through chemo than I do 8 years or so later... It is a full time full time job having to keep up with Drs, and scans and I get injections every where.,. as well my feet,, those out of now where developed issues.. and my teeth that I spent a lot of money on with veneers and now I have to have gum surgery , and I have lost otherwise healthy teeth...thanks chemo..., no one tells us this will happen,.. Not that it would have made a difference.. My Dr pushed me through the chemo to kill the cancer. i am considered a "miracle" in the fact that I am still here.. I still look good and take care of myself in that respect , but it is a shell.. and I tell Drs please do not judge me by how I look.. LISTEN to me...
To further my stress and lack of time to address myself..... My mother became ill almost 2 years ago... her care, even though my Dad is still here with her, and I have two brothers one with a wife here... everything was dumped on me for her care ... It has literally sucked the life out of me.. I saved my mother. She is home now, she is healthy again and nothing wrong with her other than she is lazy. I have 0 tolerance for that, I know what I have done to live.. I expect her to do something, anything, try her hardest.. get out of that bed and walk.... it is what my dad wanted her back home and not in a home... I have now done my best to set boundaries.. I have never seen so much selfishness within a family and I do not know if they would all function without me,.. Now that they are elderly I can not run away like I wanted to for years,, i want better health care and a better quality of life. I want the life I used to have,. it is gone and I am having a very hard time dealing with it. Thank you for your help again,. have a blessed day 🙂

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Replies to "@gently Thank you so much for your reply and thoughts. When I would have Chemo for..."

I can't begin to tell you how impressed I am with your courage. Courage and strength. And with no help from family only more needs to be handled. And then you end with a smiling face. I was thinking about the injections and nucleoplasty when I responded to your post. But I was also thinking about Forteo. Another drug but a biologic analog for parathyroid hormone. Some report a reduction of pain as it fill the spaces in the bones and the joints.
by stimulating osteoblasts and chondrocytes. I've been taking it since April and just don't ache as much.
You mught alos check out chirpractics. After the first visit the treatment is quick. I'm usually out before the half hour. You can avoid thrust adjustment, definitely in the neck, but I'm hoping the MRI reveals a simple fix. Sometimes the hardware doesn't hold position.
You've gotten good at wrestling with physicians. I hope you consider seeing multiples because there is so much to know, And new information all the time.
I had minor (compared to yours) bout with colorectal cancer and had to crisscross the states to find an oncologist willing to treat me without chemotherapy. I'm five years clear, but have time, perhaps, to realize the the anti-chemo stance was a mistake.
I suspect that you don't have time for massage, but it can be very helpful.
Yeah, you can't let hernias go because they just get bigger.
I hope for some unexpected escapes in your future.