I have just stumbled across this as I browse the web.
I was diagnosed 2 yrs ago this month with triple negative Lobular cancer and DCIS, I had a mastectomy, Chemo (5xFEC and 1xTax) followed by 25 radiation. I also had 25 lymph nodes removed of which 11 were affected.
Since finishing treatment on 31/12/11 I have suffered with the most terrible bone pains. I am unable to use my hands first thing in the morning, unable to grip anything. I also have terrible pain in my lower back, hips, knees, shin bones and sometimes even my toes. I am taking anti inflammatories and tramadol slow release - though they are keeping some of the pain at bay, it has not stopped it and if I forget to take the pills, the pain is unbearable and I am unable to walk very far.
My surgeon has catagorically stated that I do not have secondary cancer and has now passed me onto a rheumatologist who I will see on Friday. My knuckles are now a shade of red, which is worse some days than others. I am finding it pretty hard to accept this is not cancer, but the possibility of being rhuematoid arthritis - assumingly been brought on by the chemo. I had a sever reaction to the Tax and ended up in hospital for a week in severe pain.
I know the original post is quite old and I wonder if the OP and others have any updates as to how they are now?
I was dx with breast cancer 9 yrs ago, had WLE, Chemo., ( FEC ), Rads, and 5 years of Tamoxifen.
I have suffered with painful knees for about 3 years ( my job probably doesn’t help I’m a nursery nurse working with 0 - 2’s ).
Also last year I fell and sustained a fracture of the 9th rib on left side ( side effected by BC )…this took quite a few months to heal properly.
About 8 weeks ago I fell from a chair, I again sustained fracturesd ribs but this time 2, one being the 9th again!!.. three weeks after the original injury I bent to put a dish in cupboard and felt and h eard rib crak, but no pain, then five weeks after the original injury I went to sit down and they cracked again…this time had severe pain again.
Saw a GP 2 weeks ago (not my usual one ), she straight away wanted another X-ray as noticed my BC history on file and said as long as next X-ray showed clean break it would be ok otherwise she would be referring for bone scan, X-ray aptly., was ‘normal’.
When I saw my usual GP this week, I mentioned to him that the triage nurse I spoke to expressed concern regarding possible Osteoporosis /Osteopenia…he said…‘’ its ok nothing like that or cancer sec’s showed up on x-ray ‘’…
Could someone tell me if a normal x-ray would even show up these things?.
What about Chemo I don’t know ? Exercise can benefit a lot to people who are suffering from arthritis. In a study it was shown that approximately 53% of people who have arthritis problem do not exercise or go for a walk. Beyond exercise walking is suggested by doctors in arthritis problem.
Hi everyone, I came across this thread whist hunting for answers about my painful Hands/wrists!
My brief history: diagnosed with stage 3 idc on left side with node involvement finally (after a 7 month fight) in Feb 15, mastectomy and full node clearance Mar 15, 4.5 Months TAC ended at the end of Aug 15 then 25 rads ended at the end of October.
The last couple of months I have been getting terribly week painful wrists and thumbs on both sides. Also cramp to my left hand and both legs.
The onc and gps just say it’s post chemo effects but my other concern is I was anorexic for many years before the cancer. Could the two together be causing me problems.
I had a bone scan done before chemo but the onc thinks there’s no need.
sorry to go on but I find others with first hand experience better than some of the professionals.
much love to you all and thanks in advance xx
Hi I finished my chemo 30th Oct I have had terrible pains in my hands hips when iam in bed it’s as if I seize up my oncolonist says it’s the chemo and early menopaus its horrible between feeling like your 80 n the hot flushes and night sweats I don’t know what’s worse xx
So glad I found this thread. I had joint pain on anastrozole, changed to exemestane which was fine for about 8 months, then the pain started and got appalling. I stopped the meds as it was nearly 5 years, hoping the pain would wear off. So far after 4 months it’s still grim and had blood tests and x rays. Seeing clinic on Friday for some proper investigations and keeping fingers crossed. The medics don’t seem to take this seriously cos there is no ‘research’ to support our experience.
Will post again after clinic, and best wishes to everyone suffering…
Glad I found you! I have been very fortunate to have found my bc very early. Only had lumpectomy and radiation.
Arimidex - have been taking for 1 year so far and my hands are crippled.
Both thumbs trigger fingers. The pain is excrutiating as you know.
Why do they not tell you this when you start taking meds to suppress estrogen?
This is NOT ok!
So glad I found this thread - we are comrades in adversity. It seems that we all have similar side-effects with no diagnosis or long term guidance sas to how to deal with this.
I was diagnosed with stage 2 (negative lymph nodes) BC last August and was given FEC-T chemo treatment followed by 12 rounds of Herceptin - due to finish this December - and 25 rounds of Radiotherapy.
I am in discomfort/pain/agony - always. It wakes me up when I am asleep and when I rest my partner or children have to haul me off the sofa. Not only that but I have barely any bowel control and have had to continue working from home as I am almost incontinent. This is a living hell. Grateful to have had my life saved but this is such a cost to pay. The Oncologist was adament no pains were to do with the Taxotere or any other part of the treatment as were the ever unhelpful MacMillan nurses. The 3 I have spoken to at the hospital have to Google everything - Jeez, I can do that myself!! My apologies to those lovely people who have had great experience of MacMillan nurses.
So, back to the Onc, he arranged a bone scan to discount cancer. No cancer (thanks heavens) but riddled with arthritis and need a repacement left hip and right knee. I currently take 14 tablets a day. Exemestane (replaced Anastrazole due to pain in joints), Adcal (for Vit D and Calcium) - apparantly my bones are thinning too and Alendronic Acid ( a bisphosphonate?!) used for osteoporisis and other bone diseases/disorders. I have been told to take Glucosamine/Chodroitine 3 times a day and Paracetamol 4 times a day - can all this really be doing me any good. I feel like crap - always.
I don’t have an answer - you’ve read this far and probably feel short-changed - sorry guys! My bad. I’m as fed up as you all are.
I will keep up the thread and let you know if I have any breakthrough news - I did see an acupuncturist years ago for something the Doc failed to manage and after 3 sessions I was cured. Hallelujah!! Going down that route again - I will keep you posted.
Just trying to do some research and came upon your forum. Decided against radiation and chemo, had minimally invasive breast surgery and lymph nodes removed. Now have what seems like arthritis in my themb, problems with my elbow joint and what they say is carpal tunnel-all on the same side as the surgery. Do not think it is the chemo since I did not have any nor am I taking any drugs, so can anyone add to this???
Have now seen rheumatologist 're aching joints… no evidence of arthritis after blood tests, squeezing joints ext etc. So just take paracetamol and codeine in large daily doses!!! No chance, took them for a week or so only, just to get things under control.
After a lot of thought, I stopped all my meds (non cancer related) and calcium supplements last week. Cautious optimism so far, pain much reduced. Arthritis can be related to calcium deposits in joints apparently. Will visit GP soon to discuss.
Hi All!
I have chronic pain in my right arm that seems to be getting worse. It has started with wrist pain and now shoulder pain so my entire arm now aches kinda freezing up.
I will be finishing up my Herceptin this Wednesday! After a year of it! I believe the wrist pain is from it. As for my shoulder well I have been told by a specialist that it is arthritis a calcium deposit and bone spur! Great.
Last year was AC followed by Taxol and Herceptin. Double mastectomy surgery was Jan 2 of the year with reconstruction surgery still needed for the expanders to come out and implants to go in!
I’m not taking any pills…tamoxifen…yet if ever.
I’m Her2 pos.
I had a steroid shot in the shoulder and my ask for another! Keep you posted.
Wish everyone well and wishing no joint pain and arthritis!
Sue
I’ve just had a bone scan for lower back pain and it seems I have arthritis in both feet and my right knee. They are doing a lumbar mri to see if there is any disk degeneration now. It’s interesting that I too am on Herceptin and have had chemo, full mastectomy and full node clearance and radiotherapy. I’m seeing my oncologist on 9th December so will discuss with her. Be interesting to know if you guys think it could be linked to Herceptin. Will come back and update X
Thanks for your kind words. Like you I was hospitalized with doxatacel and had to have the dosage reduced. I had terrible pain in my joints throughout my chemo. Like you say I am very glad to be here still. Just wish I could do something about the nasty side effects. My husband and family are lovely and supportive, but I wish they didn’t have to do so much for me. Hope things improve for you.
Very excited to find this string of posts. I have incredible joint pain after Taxol chemo treatment. In all my joints. Knees and shoulders especially. I’ve been taking OxyContin 1-3 times a day. I finished treatment on Thanksgiving. It is getting better, but incredibly debilitating. It originally took me two OxyContin just to sit up in the morning.
I have read that this arthralgia is caused by taxane related chemotherapeutics. This is documented in scientific literature extensively. I’ve never read,however, how long the effects last after treatment or if they are permanent. It Is caused by nerve pain or neuralgia. I was prescribed Lyrica and Neurontin (used to treat Diabetic nerve damage pain) to replace the OxyContin. It removed the pain completely. However, depression, anxiety, and suicide are the side effects. I had terrible panic attacks and chose to stop treatment. If you can tolerate these drugs they are incredibly effective. I’m on the lowest dose of Oxy, and am not overusing, but with any opioids there is always the fear of abuse. I feels at the end of the day the treatment for this is the best of two evils. Thanks for the post!
Sending my thoughts and prayers!
Deanna
Petal88, I recognise and take the drugs that Dkscott has talked about. I also take long acting OxyContin twice a day and Lyrica (Pregabalin). I also take fast acting oxynorm as needed during the day. All for joint, muscle and bone pain. I was dx with inflammatory BC, had chemo 3 FEC and 3 tax, full axillary clearance, mastectomy then rads. I have lymphodema, awful pain and fatigue. I am 47 but feel so much older. I had an extreme reaction to tax; neutropenia, allergic reactions and my onc has said I am still suffering from this a year later. I just can’t seem to get any advice on what I should do about it other than pain relief. Exercise, rest …
It is so difficult to work your way through the pain isn’t it. I was on holiday in Ibiza recently where I swam in the sea at least once a day. It was so warm. It really helped my pain. I’ve only been back s few days and my pain levels are back to where they were again. I went to buy milk today and it was such a performance. I’m going to start swimming in the local pool and see what else I can do. Thank you for all the ideas.
Finally had my neurologist appointment yesterday. He agreed with the oncologist that my symptoms are due to the docetaxel chemotherapy. He examined me and said I had significant weakness in my legs, but that I had weakness in my arms also -which was news to me! I know my hands are weak( I can’t get the lids off bottles etc) but I guess the arms went unnoticed with everything else going on! He says he thinks I have motor neuropathy from the chemo. It is more common to get sensory neuropathy ( numbness, tingling usually in the hands and the feet). Going to have some nerve conduction tests as the next step. I had hoped to be off crutches by my holiday in August, but that’s very doubtful now.
Just there was more help with physiotherapy on the NHS for cancer patients like us. We seem to fall into abyss because we don’t fit the standard side effects.