Herceptin and Aches

Hi - so good to read of similar experiences. I've been on Herceptin and Arimidex for six years. Very tender feet for four years and this last year severe spasms in rib area. I found a physio I trust just a a few weeks ago, basically I have tensed muscles in an attempt to compensate for the foot pain. Chassis has been under acute stress for years. In the last six months the joint pain and stiffness has increased and some days are really bad - I take Voltarin and/or Panadol. The acute pain in turn releases adrenalin which has the effect of a toxic cocktail - bit of a round robin. Social life is very limited at the moment. The physio has given me gentle exercises to stretch and strengthen the tight and neglected muscles and I like knowing that I can do something, however, this does not prevent the side effects of the drugs. The other night my left knee played up, intense pain and I used a surgical stocking for the day.  I use a walker some days as it eases my feet and keeps the 'chassis' in alignment and I'm more likely to use the correct muscles to walk. I'm 70 and was the fit and flexible sister - adjusting to a new self image. Good to share. Beryl xxxxxx

Thank you

Hi @auOrei
I have exactly the same treatment and was warned by my oncologist that the Herceptin can drag the Taxol side effects with it for some time in some cases.
I have had the bone aches, especially in the hips and legs and it is more obvious resting in bed and trying to get to sleep.
I also have what he termed 'recall reaction' which is some AC symptoms return, particularly fatigue and some nausea. It's also thought to be caused by the Herceptin but rare.
The good news is, it is abating.
I've found that the only thing that really helps is swimming.
I have 2 more infusions to go and then upward.
Good luck.
A

Yep, I was the same.  It's the chemo, particularly the  Taxotere which attacks the sheath around your muscles causing myalgia. Absolutely joyous condition that is on the list of side effects, but I think it is seriously underplayed because lots of people are affected by it. It seems to kick in a few weeks after the last treatment. Mine arrived literally overnight, I couldn't figure out what had happened, one day I was fine, the next it felt like I had run a marathon, up hill.

The sight of a flight of stairs would have me in tears--I could get up, but I couldn't get down. Seriously. We went on holidays and the house was two story, I had to sit on my ( burning) arse and bump down like a baby. As for trying to get up off the floor, what a performance. 

The good news is it passes. Sort of. I'm now taking Femara so it's hard to tell what is responsible for the lingering misery in my legs. 

My GP and I have come up with a plan; it's now about 5.30 am and I've just had a Tramadol. That will give me enough relief to go for my walk and do something at the gym, yoga this morning, before I seize up again. Ill have a neurofen with my lunch. 

Once you get moving the tendons stretch a bit and you will feel better, problem is they snap back like elastic bands once you stop. Thus the business of limping and hobbling if I've been sitting, particularly in the car, for any more than a few minutes.

Don't get too wound up about dealing with this while you are having surgery. You might as well do all the shit things at once and worry about getting back to normal once you are over the worst of it. There are a few stretches that you can do in bed to try and loosen your calves and hips before you get up, get the physio to show you those and see if they help.

Good luck, Marg

I've finished chemo  x 6 (TCH) still on Herceptin till April. Just finished 25 Rads and next week is bilateral nipple sparing mastectomy with diep flap. I'm nervous :( After chemo (August) I developed incredible muscle pain and weekness in my lower back, hips and a dreadful sciatica on left side that I'm having difficulty shaking off.  Don't know how I'm going to cope with surgery and all this pain. How I'm going to get around afterwards. I'm 50 and even my 92 yo Mother gets around better than I do! She's amazing. 

I hate going to bed atm and even sitting on the lounge and getting up after 10 min is painful.  My muscles feel poisoned. Voltaren helps but Chiro said take 1 magnesium am and early PM as well as 1 Panadol osteo and 1 neurofen 3 times a day for 4 days then try and have 3 days without for a break.  And continue the cycle until necessary. Continuing the magnesium. I'm aching all the time and doesn't let up and my glutes are on fire. Seeing exercise physiologist atm also but not really helping the situation. I think it's the herceptin and being forced into menopause I guess?

Anne x

I had the same treatment regime 4 rounds docetaxal and cyclophasphamide and 17 Herceptin. I finished the TC last February 2016 and the Herceptin at the end of November and still have a lot of joint pain. I am on Norspan patches which I think are pretty heavy but they make me fell normal. I am told it was the taxol that causes the joint pain

That will be the taxol. I got right through 4 cycles then my legs seized up. That was 8 weeks ago and I'm still hobbling. Not happy. 

It's the taxol hangover I reckon. It was a few months before I stopped having body aches. Eventually I just felt tired after herceptin nothing more. I took panadol osteo regularly for a few months after chemo. I'd also started femera and that caused some joint stiffness at first but settled after a few months also. 

It could be your body making more white cells to combat disease resistance. Mine plummeted after chemo and I ended up with a cold that lasted 3 flaming months lol. The cells are made in the long bones of your body so the aches are kind of a good thing although its not great to have at the time. I am on Tamoxifen which I think messes with things as well as my knees and hips often ache especially in bed. I have noticed if I go for a long walk, its tight as for a start and about half way it starts going away so keep up the exercise even though you don't want to.