My first post - I am interested hearing if anyone has experienced joint and tendon pain from Chemo/Herceptin. This is not pain during or just after treatment but rather is seems to be accumulative... getting worse every day for the last couple of months. I have horrid pain in my elbow joints, wrists and thumbs which is impeding movement and ability to lift and grasp. I have been told that Herceptin or Chemo are not the cause (or at least would be on the bottom of the list). When I read blogs to read first hand experiences, joint pain seems quite common (and debilitating) and that oncologists are always negative about the drugs being the cause. I thought it must be Herceptin as that is the only drug I am on now and it has been getting progressively worse since finishing chemo in June, but then I heard that it may well be a catch-up from Chemo... arrgghh Any feedback or experiences would be appreciated. Of course am doing the whole testing thing again to be sure.... Thanks, Jan Background: Doxetaxel & Carboplatin with Herceptin 7th April - 3 weekly Changed to Paclitaxel (Taxol) with Herceptin - weekly doses 26th May (complications from chemo) Finished Chemo early on 2nd June due to neuropathy Continued with 3 weekly Herceptin since then

I had docetaxel, cyclophosphamide (finished February) and am still having herceptin. Also had radiation. Joint pain in hands, feet, knees and shoulders definitely worse since starting chemo to the point of affecting quality of life. Am now on Norspan patches 10mg and panadol osteo. Starting a cancer rehabilitation class on Wednesday at the physio clinic twice a week which will hopefully help with pain.

I'm on Herceptin x3 weekly infusions and this week's treatment will be no. 67. I've experienced a variety of side effects and when mentioned to my oncologist the response has always been casual, almost disinterested, although for everything else I have had excellent health care. My GP finally listened when I hobbled into his surgery with feet so tender it was excruciating to walk - very debilitating! There appears to be no trigger and it comes and goes. GP prescribed Celebrex which I take on work days (a few hours for a couple of days a week). I have outbreaks of severe mouth ulcers and a bi-carb rinse eases the pain. There have been times when I couldn't use an arm or hand due to tenderness and I found a surgical stocking and arthritis glove helped. Recently I have become very stiff and sore in muscles and joints and its a challenge to get out of bed in the morning and I find my limited mobility distressing - given that I've always been very agile and fit. A couple of years ago I had intermittent severe headaches and outbreaks of conjunctivitis. I've also become hyper sensitive to artificial scent resulting in immediate headache. For two years I've had injections for osteoporosis and now inject Clexane daily as a blood clot developed under my port (excellent care as my Oncologist phoned me within two hours of my scan, phoned my GP to arrange prescription. I had my first injection the next day). The list of possible side effects is long and varied. I value the BCNA links to specific topics and find it reassuring to know that others have similar experiences. To date, and its been a few years, I have found medical professionals very casual in their approach to Herceptin symptons and I have wanted to scream, 'This is debilitating!' Anecdotal evidence suggests the side effects and symptoms to be very real! Thanks BCNA for this forum.love, Beryl C.

Hi Melclarity - would have posted an reply but not option.... Thanks for your info "Chemo shrinks the sheath across the muscle my exercise physiologist told me recently". interesting isn't it all the things that can happen and we are not informed about until they do.... mmm. I have thought recently that I need to (or understand if I should) do specific physio. Friends say "just exercise you will feel better" mmm I am not sure as the pain to move in certain ways is excruciating whilst others is not.. not sure if i am exacerbating or assisting LOL So am going to ask the Onc. next appointment if I can access some assistance in that area.

I had awful joint / muscle pain whilst on taxol and herceptin but then the last 3 cycles it just suddenly stopped. So bizarre. But I have periodically over the years experienced various nerve pains(causing aching and sharp pains in a number of extremeties) due to disc issues. Sooo....my thought now is the chemo may have re stimulated those previous damaged nerves. My oncologist suggested this as originally my neuropathy was one sided 2 toes only....and said that old injuries can flare up. Now I had some issues with my neck and posture due to my heavy breasts in the past which gave me nerve pain, aching, weakness in my hands and elbows and particularly grip and lifting issues. Even now with them gone I have to be very conscious of posture, not being round shouldered or hunching as this causes the nerve pain to come back in the wrists. ..which is just like an aching. Sitting looking at phone screens can really play up if not careful. I'm not saying the chemo isn't causing it, but it might be stimulating old irritated nerves. Thought I'd let you know about my hand wrist issues as it was a mystery ...I underwent many many tests and saw rheumatoid specialists etc but eventually solved it myself. I also have some spurs in my neck and disc degeneration which contribute to the issue. Good posture, regular stretching like in yoga and exercise really seem to help. This article is interesting. Can be known as thoracic outlet syndrome or costoclavicular syndrome. http://www.chronicbodypain.net/everything-you-need-to-know-about-bra-strap-syndrome/ Hope things improve fir you soon. Kath x

PS to my post - I have never been on Chemo or had radiation. My treatment has always been Herceptin and daily Arimidex.love, Beryl

Joint and Tendon pain after Chemo and while on Herceptin

14 Replies

Beryl_C_
Member
9 years ago
Hi Nadi,
thanks for your post. I indulged in sugar products over Xmas and noticed that muscle aches, stiffness and fatigue and 'dull' head increased. My diet is free of fast foods, gluten, sugar and limited lactose. Protein in the morning improves fatigue - we grew our own Chia last year, but usually b/fast is Yoghurt or an egg. I went to a naturopath when all this began and for the first two years had daily juices of carrot and granny smith apples - but I've lapsed with that routine. I make smoothies with banana and lactose free milk. My husband grows most of our vegetables including garlic - not sure if that makes any difference really but I love the idea of having three or four veges on the plate all home grown. Increases my 'feel good' barometer which is important.
Beryl XXX
melclarity
Member
9 years ago
Jan, i thought exactly the same as you. My exercise physiologist is trained specifically for helping rehabilitation. I had no hope of 'just exercising' due to the pain and unfortunately muscle wastage due to being so ill 4.5 months of chemo. Its a long road back but am getting there and would recommend specialist help to start. I get 12 sessions through my income protection but you can get some through a plan and your GP. Melinda x
Jan77
Member
9 years ago
Wow Nadia, that is fabulous.... thank you for the dietary information. in the beginning I was very strict with a similar dietary regime... and have slipped - my NY resolution was to start again which I have done... so this is confirmation.. thank you. Much appreciated. Jan
Nadi
Member
9 years ago
Hi Jan. I finished Herceptin 29 November. I did the exercise and physio thing for my joints during treatment but it only made my pain worse. The best thing that made a difference to my joint pain was going on an anti inflammatory diet. which I started in September. This was a radical change for me. Nothing artificial. Fresh fruit veggies, meat, limited dairy (a little milk but no cheese) and no grains or carbs. This has helped tremendously. Now if I have anything with sugar in it it's guaranteed that I will be in pain the next day. I have lost 24 kgs eating this way and am not doing any exercise but I am still much more active than I was. Yesterday I went on 5km canoeing trip with no problems. Hope you find something that makes you feel better soon.
primek
Member
9 years ago
I'm 5 months on now but still on herceptin. I continue with joint stiffness but as I'm on letrozole now I also get hand and feet stiffness which improves when I start moving again. All my muscles get tight easily and even after walking or standing a lot my calves go tight. It's hard to know what is causing it but I do know for me if I remain mobile it improves.
Jan77
Member
9 years ago
Hi Melclarity - would have posted an reply but not option.... Thanks for your info "Chemo shrinks the sheath across the muscle my exercise physiologist told me recently". interesting isn't it all the things that can happen and we are not informed about until they do.... mmm. I have thought recently that I need to (or understand if I should) do specific physio. Friends say "just exercise you will feel better" mmm I am not sure as the pain to move in certain ways is excruciating whilst others is not.. not sure if i am exacerbating or assisting LOL So am going to ask the Onc. next appointment if I can access some assistance in that area.
Amazonia
Member
9 years ago
Sorry, half finished.
Previous trials indicated that the Taxol/ Herceptin combination is more effective than each drug given one at a time.
I do know that the side effects of Taxol are cumulative and can start to build around week 6.
it has been stressed to me about the importance of communicating to my oncologist as it builds, in case he needs to wind it back ever so slightly to even out any increase in pain, etc.
best wishes for some relief.
A.
Amazonia
Member
9 years ago
Hi Jan,
i had AC x 4 and it knocked me about..
Now on weekly Taxol and Herceptin 3 weekly..
Monday is week 4 with the combination.
I've just started getting joint pain. Hips mainly causing first disrupted sleep (lucky so far, I guess, with that.)
My oncologist is lovely and very informative and he says that the one downside to having Herceptin with Taxol is that the Herceptin can tend to drag out the Taxol side effects for awhile after the Taxol is completed.
They used to give th
melclarity
Member
9 years ago
Hey!!! So youre roughtly 7 months out of chemo?? I can't comment on Herceptin as havent had that, though I am 1yr post Chemo now 4 FEC and 8 TAXOL. I suffered, nerve, bone and muscle pain on Taxol and honestly even all this time later I still struggle with the pain especially in the joints. The other thing I get is constant cramping across my back and in my legs. Chemo shrinks the sheath across the muscle my exercise physiologist told me recently. So am on the mend, but I certainly dont think its abnormal at all. In fact I think its really common!! I still cannot do heavy tasks such as mow a lawn, but I have progressed and now can manage alot of things, its just time. Hugs Melinda xo
Jan77
Member
9 years ago
Hi again - update re Hercepti5 n paid... now has spread to my shoulders... so the whole moving arms thing is very painful.... getting out of bed in the am... whole body stiff and sore like I have run a marathon the day before... gets better as I move about.... I can do things like mowing etc but when I sit down.... 5 minutes later I cant move... New oncologist next week so will be interesting to see their attitude. I don't want to take drugs to combat so I think they loose interest in listening. only 4 months to go... lets hope it doesn't get too bad before finishing. Good to read others comments to0 :-) have a great day