side effects of herceptin/Tamoxifen

Hi to everyone! I am new to the site but have found loads of useful info from others by checking outh the forum. I was diagnosed with breast cancer following a speck of blood from nipple for 2 weeks. This led to WLE which diagnosed DCIS Aug 2006 - like many I was told this was “pre-cancer” and that I wouldn’t need chemo/Radio, just surgery. After time to think about every thing and evaluate my options I decided to have the advised mastectomy and breast recon in form of saline implant last September. I had a fantastic surgeon and I’m sure I owe my life to him. He decided to sample sentinel node and remove adjacent lymph node during mastectomy(which doesn’t have to be done with diagnosis of DCIS) when the results came back i was found to have invasive BC 1cm and positive lymph node. i then went on the next month to have axillary clearance and thankfully all other nodes removed came back negative. i then had to see Oncologist to plan the chemo and Radio and was also told that I was Er pos and HER2 pos so would need Herceptin and Tamoxifen at end of chemo/radio. This I am now having and have had 3 doses of Herceptin and am into my 8th week of Tamoxifen. I feel like an old woman with terible joints pains which ease up when i get moving and i have seen that others suffer this too that have had tamoxifen. It is also a s/e of the Herceptin. Does anyone have any problem with fluid retention? because since about a month ago I have started to fill up. I can’t get any rings on, all underwear is too tight and my shoes cut in. I have just started to take a water tablet to see if this helps. I am so grateful for all the treatment etc but disappointed to be getting worse s/e with latest treatment than i did on chemo!!

Hi Mandarin
Cannot believe what you havewritten. I have had four Herceptin and feel like 100years old, all my joints are stiff and today my ankles are really swollen. I have never had this even with having the children. Rang NHS direct tonight and they said arthritic pain and swelling is one of the side effects of Herceptin. Like you i am very grateful for the drug, do not want to take anything for the pain, but i wondered if i could take a water tablet but was not sure with the treatment. The nurse from NHS wants me to see doctor tomorrow for the ankles and also i have had hypertension as high as 175/115 i am normally 120/78 today about 154/84 have you had this ? Can anyone suggest anything please apart from taking more drugs as feel body has had enough toxic battering since last November ?
Take care Mandarin and hope things are very positive for you
Very Best wishes
Kate

Thank you for this post. I was just complaining to my OH, that my hip joints are sore and also my lower back, I couldn’t explain it as chemo has finshed but I have had 5 sessions of HerC. That must be it! I don’t feel like a fraud now, was beggining to wonder if it was in my head.

K

I have finished Herceptin and had no problems, but I had horrendous problems with agonising joint pain on Taxotere, also very swollen feet an ankles whilst on the Tax/Her combo. I now suffer with pains in my knees a lot.

I

I am having my 7th herceptin on friday and have had hip and bacck pain this last week thought I was being soft. Took Paracetamol and ibuprofen with good pain relief. I am glad to be alive and also to learn about how other’s are getting on.