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Shonagh
Member
since
10-10-2017
9
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4
Hugs
17-03-2019
10:29
Hi Jay68, Gosh we sound identical!! I’m 57 going on 97!! Yes, I too thought it was plantar fasciitis but the symptoms aren’t really in my heel although bizarrely I did definitely get plantar fasciitis after the second round of chemo!! Never had it before and the oncologist just said it was coincidence - I’m not so sure now. I went to see a podiatrist last week and she is referring me on to see a specialist, though not sure how long this will take. I too manage to walk the dog 3-4 miles everyday but some days I’m just aching which gets me down but as you say we are still here. I’m a scientist by training and I find it frustrating that noone can explain it or cure it - even better!!
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16-03-2019
12:08
I know this is a common thread as muscle and joint pain seems to be a side-effect for lots of the cancer treatments. However, I was really hoping/expecting that I would start to feel better but it seems to be getting worse and it is getting me down. I am no longer on any drugs. I had my diagnosis in Oct 2017, Her2 +ve - had FEC-T chemo, lumpectomy, radiotherapy and herceptin. Recurrence on Herceptin so left mastectomy March 2018. Two months after I finished my chemo, I developed very painful feet - not classic neuropathy but as if someone had been hitting them overnight with a baseball bat. It is very bad first thing in the morning and I have to hobble around like a 90 year old. Gradually my ankles seemed to join in plus knees, hips, shoulders and neck. My oncologist prescribed dexamethasone for 6 months and hey presto it all disappeared within 2 days. I can’t tell you what a relief but after a year on the steroid I have now been advised to ween myself off and I am literally back to square one. I used to be such an active person and I’m really struggling. The health professionals just seem to shrug their shoulders and don’t come up with any advice. The fact that the steroid obviously alleviates the symptoms suggests to me that it is some sort of chronic inflammation brought on by the chemo or herceptin or both. I just wondered if there is anyone out there that has found any treatment to relieve the constant pain. I’ve tried all the usual painkillers, glucosamine etc but no joy.
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02-09-2018
10:56
I finished my Herceptin In February and aside from the odd joint ache I can safely say that I am finally beginning to feel better. The muscles in my legs do feel weak but that is partly because I haven’t been as active as I used to be. I have managed to walk my dog everyday but it has been quite an effort. However, I have started cycling again and I didn’t feel exhausted as I have previously. I know everyone reacts differently, but the nurses told me it takes 6-7 months to clear Herceptin from the body so you may have another 3 months to go. The bottom line is that you do feel better as each month ticks by but I suddenly felt loads better when I reached 6 months post-Herceptin. I am finally hopeful that all those joint aches will disappear - fingers crossed.
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01-09-2018
08:56
I completed my Herceptin injections 7 months ago and I used elma cream for each injection after the first one stung like hell! Your GP should prescribe you the cream plus the dressings - it comes in a neat little box of ?4 small tubes. The nurses give me my sub-cut injections at the top of my thigh so I used to put the emla cream on and cover it with the dressing at least 2 hours before my appointment. I can’t remember the name of the dressing but it is the clear waterproof type with no gauze. The cream completely numbs the area so you don’t feel the needle being inserted although depending on the operator there can still be a bit of stinging. Each tube of cream can be used at least twice. My main gripe about the whole process - aside from the fact that Herceptin didn’t work for me as I had a recurrence while still having the injections! - was that there seemed to be no standardisation of the way the injections were given. Some nurses were much more skilled than others!
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13-04-2018
12:23
1 Hug
I don’t mean to panic anyone but I’m curious to know if anyone has or is going through a similar situation to me. I was diagnosed with a HER2 + breast cancer in Oct 2016. I had neoadjuvant chemo, FEC-T which completely destroyed the tumour. I then had a lumpectomy followed by radiotherapy. Everything appeared to be going well and I was having my 3 weekly sub-cut Herceptin injections. However, in Jan of this year, I noticed the scar from the lumpectomy felt a bit uncomfortable and I had an occasional blood-stained discharge from my nipple. To cut a long story short, the HER2 tumour had recurred even though I was still on Herceptin. I’ve since had a mastectomy with good tissue margins and no spread to any lymph nodes. Of course the dilemma now is what to do next. My oncologist has contacted the Marsden in London for a second opinion and while I wait for their response, I thought I’d post on here in case anyone has been through a similar scenario.
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24-02-2018
04:32
1 Hug
I don't want to be the voice of pessimism here but I should point out that Herceptin doesn't always guarantee a successful treatment. I've had chemo and 18 herceptin injections for my Her2 positive tumour. My tumour was completely destroyed by the chemo and I had a lumpectomy. The histology confirmed there were no tumour cells left in the tissue and my lymph nodes were all clear. The week before my last Herceptin injection, I was very suspicious that all was not well and I have just been told that the cancer has returned. It has not responded at all to Herceptin. To say I was devastated is an understatement but I also didn't realise there was the possibility that the tumour cells wouldn't respond to Herceptin. I don't recollect that ever being mentioned so I guess I just assumed it always worked. So I'm now back on this roller coaster journey. I really wanted a mastectomy first time round but because my reponse to chemo had been so good, the surgeon talked me out of it. Hindsight is a great thing but sometimes you need to really go with your gut instinct.
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11-01-2018
04:48
There is also a product called Evonail which is manufactured in France which you can buy off the internet. I used it on my nails through out my treatment ( 3 x FEC and 3 xT) and my nails survived. My top tip is to keep using it for at least 6 months post the last round of docetaxel especially on your finger nails. It is the UV from the sun which combined with the docetaxel causes the damage. My oncologist also told me that your toe nails grow much slower than finger nails so it takes longer for them to recover.
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24-12-2017
10:14
2 Hugs
Hi Kim and everyone else on this thread. I've really suffered with terrible joint aches since the start of the Herceptin injections. Initially my oncologist denied that it was anything to do with Herceptin but I went to see him for a review in November and he confessed that several other patients have also had very similar symptoms so he now thinks it is related to Herceptin. To cut a long story short, I was prescribed steroid tablets which were just brilliant - dexamethasone. Within 3 days the pain had gone and I had been suffering for 3 months! I have just had my 14th dose of Herceptin so only 4 to go. I have started to reduce the steroid dose and I'm now taking 0.5mg/day (started on 2mg/day) which only just holds the pain at bay. My gut feeling is that the joint pain won't go until the injections finish so I'm really counting them down. My advice would be don't suffer in silence, I was exhausted from the lack of sleep as my whole body ached everytime I turned over in bed. Good luck and Happy Christmas.
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10-10-2017
09:48
I finished chemo in April, and 2 days after having my first sub-cut Herceptin injection developed chronic joint pain. I could barely get out of bed and my feet felt like I had the worst case of plantar fasciitis ever. Paracetamol, ibuprofen and eventually tramadol from the GP didn't touch the pain so after suffering for 3 months I eventually made an appointment back at Oncology to see my consultant. At first I was given the standard reply about me now being post-menopausal but unfortunately for him, I had previously had an ovarian cyst and had opted at surgery to have both my ovaries removed so I was already post-menopause before I was diagnosed with breast cancer and had certainly never suffered such severe joint pain. Anyway, to cut a long story short, I was prescribed a short course of steroids and it has been an absolute joy! No more joint/foot pain and I feel almost back to normal. I have tried to come off the steroids once but the pain returned so I'm currently on a very low dose and hoping to reduce it over the next month. So my advice to everyone is don't suffer in silence. I really regret not seeking help sooner. I know being on steroids is not ideal but I'm hoping this will be for a limited time period. It is great feeling 56 as opposed to 106!!
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