My mum is currently having herceptin after having 7 chemo’s, a lumpectomy and then a mastectomy and we haven’t really got the all clear but I presumed things were improving and it was just upward from here.
Now today she tells me she has been to the doctor because her legs have been aching and that the doctor has asked her to go for a scan and blood test early next week. She is telling me that it’s to see how the mild osteoperosis is that she has, but I don’t think that’s the truth, I;m so scared that it’s because they think the cancer has spread to her bones.
She had her lymph nodes removed and they were all clear and the tumour responded well to the chemo, reducing significantly in size so I don’t know if it’s almost impossible it could be cancer as the scan she had a year ago showed no signs, but I can’t get it out of my head and I don’t know what to do with myself.
I had a lumpectomy and lymph nodes removed 2 years ago, had chemo, radiotherapy then herceptin for a year. Unfortunately in my experience the doctors don’t dwell on the side effects of treatment very well, like your mum I had achy legs along with other aches and pains. I think your mum has got a good gp as she is doing tests to check things out which is normal procedure when someone has had cancer.
First of all well done to your Mum for coming through the treatment this far … I ahve great admiration for th eladies who’ve had the full works … I got off lightly with lumpectomy, rads and tamoxifen.
I’m not very clued up on Herceptin but I think this can cause aches and pains - I’m sure there will be someone along soon who has more experience and will clarify.
Your Mum’s GP may well be like mine - he is of the ‘taking no chances’ brigade and when I mentioned that my back was sore and had been for a couple of weeks he was right in there with a bone scan referral (thankfully it was clear) - what he said was that with a grade 1 tumour no nodes involved it was higly unlikely that it had spread to my bones but the policy was anyone who had had a breast malignancy and then complained of back ache was automatically referred for bone scan … it may be the same with leg pain, I’m not sure.
I hope your Mum is soon given the all clear after her scan.
I’ve had achy legs since my chemo (Taxol) which causes a lot of joint/muscle pain at the time and is supposed to carry on for a while so I put it down to that. But I finished taxol in November and now have such achy legs that it’s hard to walk sometimes. I’m also on Herceptin and thought it’s probably that too.
I will ask my Oncologist next time I see her about the achy leg thing, but I do think it’s just a symptom of all the toxins we’ve had put in our bodies.
I found gentle exercise helps (like pilates) and walking, but not overdoing things!!
Hope this helps
Thanks to everyone for your messages. It SO helps to talk about things on here. I know I’m probably over reacting, it’s just hard to not think the worst sometimes. She has had two herceptin now so I thought maybe it might also be a side effect of that and also with the chemo aches and pains and osteoperosis.
Hi, I had 4 cycles of Taxotere, 3 with Herceptin. I suffered really severe joint pains coupled with the sort of fatigue that people with ME get; I also had no option but to take Tramadol painkillers which added to the fatigue. I’m a year post chemo and about 4 months post Herceptin and still have problems with my knee joints and ankles. My oncologist advised me that Taxotere/Herceptin along with painkillers is a very difficult combination for a lot of patients.
Hi - I am on Herceptin and due my 9th one. Since having chemo I have very painful hands, ankles and feet. My knees have started to play up too. I have put it down to the chemo and I am aware that the Herceptin plays a part in this.
Does anybody know if it actually gets better with time? I would hate to think I will be like this for a long time. I feel like an old woman when I get up out of a chair and very conscious of it when I am out.
Michelle & Lizzie - just to add another voice to say I had achy joints and odd pains while on Herceptin - I also felt pretty ill all the time, not as bad as chemo but debilitating. That lifted as soon as I came off the warfarin you have to keep the line open! Never thought of that.
Re the scans - it’s very scary for both your mother and you; I think a lot of us feel that if they go looking inside us for cancer spread, they’ll find it. For what it’s worth, I’ve had scans twice in the last 3 years since finishing chemo, and both times they were clear; I think you’ll find a lot of people here who’d say the same. I’d like to say you learn to deal with the fear, but it’s difficult.
Best of luck for the next couple of weeks, and Michelle I do hope your mum’s OK. It sounds as if they’re just being cautious - I’ve been told they do scans automaticallly to exclude cancer before moving on to try and help with whatver is actually there, so they’re often not expecting to find it, just working through a checklist to be quite sure of not missing something they could help control.
I had a bone scan in June because I am at risk of developing osteoporosis as I had a chemotherapy induced premature menopause and am also taking Arimidex. My tumor was extremely sensitive to oestrogen and so the Arimidex stops me producing any oestrogen as even post menopausal women produce some oestrogen. As you probably know oestrogen protects the bones.
I have been having achey legs and am set after sitting down for too long. My bone scan was normal but I have been told that I will ned another one in a years time to see if I am suffering any effects of osteoporosis. Bone scans are routine where I live so I wouldn’t read too much into the fact that your mum is having one.