Does anyone suffer fluid retention with Tamoxifen & Herceptin?

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!! 1 to 1 of 1

Hi

I have been on tamoxifen for over a year now and I have awful fluid retention. My hands and feet swell up as well as my stomach. I got water tablets from my GP and I take one when its really bad but she told me not to take them every day so I dont. Did not have herceptin so cant comment on that.

The joys of BC!!!

ALise x

thanks Alise for your reply - doesn’t sound like it’s going to get any better then,especially as both can be causing the same side effects. As you say the joys of BC!!

mandarin
xx

Hi
Yes I have suffered quite badly from fluid retention, worse was when I started Taxotere chemo with Herceptin, I would roughly put on about 5/6lb after each session, this would go again but left me very bloated in the hands, legs, feet and tummy. It did get better once only on herceptin and tamoxifen but I am still not wearing my engagement or wedding rings and like you suffer still with my feet and ankles. (especially evenings) I finished chemo 12.7.06, herceptin 1.6.07 but still have another 4 years on tamoxifen, I did take retention tabltes whilst on the chemo but am now thinking it may be a mixture of the treatment and weight gain of around10lb, had just started back at local gym and lost 2lb but its now shut due to very bad flood damage. Just my luck.

Debbie

Hi Mandarin, I too have just had my third Herceptin (awful trouble finding vein cos of previous chemo) and am about 8 weeks on Tamoxifen. After the first Herceptin my feet, ankles and lower legs swelled and took a few days to return to normal. It seems to take longer to return to normal after each treatment. Ah well only 15 more to go! Also some of my nails are turning white. Apparently these are possible side effects of Herceptin.
I don’t get the joint pains or flushes with Tamox like lots of you ladies do, and wonder if it is my age (63). That might seem like a daft comment but what I mean is I had already been through menopause before dx.
At least we are still here to tell the tale. This site has kept me sane so thanks to you all out there.
Maggie

Thanks Debbie & MAggie for your replies. Sorry to hear about your gym closure Debbie hopefully it will reopen soon.
I’m 47 and pre menopausal tho no period since December - awaiting blood test results to see what my hormone status is rgarding the menopause.
i agree the site is wonderful and I do apprecaite your replies. As you say Maggie at least we are still here to tell the tales and have the occasional whinge!!
Mandarin xx

Hi Ladies

I’ve just joined. I’m 41yrs, was diagnosed in March with breast cancer. I have had a wide local incision to remove the lump, which came back with a clear wide margin and clear lymph nodes but I still feel as though I have full blown cancer as I’m about to have my fourth chemo session, then expecting radiotherapy, then herceptin and tamoxifen. Enough about me though, I read your comments about the side effects of herceptin with interest for obvious reasons. I do not know if the following will help and I strongly advised you speak to your consultant first but lymphatic drainage may help (I am a complementary therapist qualified in lymphatic drainage). It works on the lymphatic system which is responsible for removing waste products, excess fluid and stimluates the immune system (hence needing advice first!). If your consultant gives you the go ahead, it may be worth trying a few sessions. If your lymph nodes are blocked or sluggish, this may be why you are bloating, clearing them may solve or at least help reduce the fluid retention. To find a therapist near you, go to www.embodyforyou.com and put in your postcode but please get permission first from your consultant.

Poppy

thanks Poppy that i will do- anything maybe worthy of a try. Of course i will speak to my consultant first though.
good luck with the rest of your treatment. if it’s any consolation I had very little probs with the chemo and even less with the radiotherapy, just seems to be now!
Mandarin x