Herceptin and radiation side effects

Hi Beryl, thanks for your response. Wow 6 years and here I am complaining about a year and a half sorry. So how long will you have to be on it for? Sorry what do you mean by “lack of vitality”? I don’t wear make up or nail polish so that parts achievable ✅ I have joined a gym so I aim to try and exercise which will be a big step as haven’t done any in a long time and very overweight which I know does not help my cause. I think people including my oncologist seem to think herceptin is a walk in the park after chemo but of course none of them have experienced it. I still feel almost as crappy as I did with the paclataxol although I was always having the herceptin 3 weekly as well so it’s hard to know what’s causing what anymore and if radiation is exaserbating (prob got that wrong) it all. I will be back working full time after radiation just hoping that’s achievable with the herceptin still. I’m curious about what sort of supplements help you, also what are parabens and what toxins to be wary of. Also shampoos and hair colour what should I be doing there? I currently only have a bit of grey fluff at the moment so that’s not a big issue right now but will be eventually. Sorry Beryl to bombard you but I don’t know who else to ask all these questions to as no one thinks to discuss all this with you and as I’m currently not working can’t afford a naturopath :(   X

I've been on Herceptin for six years. The most obvious side effect is a lack of vitality, I find I can 'push through' knowing that I will need time to rest the next day. My work was not full time and that helped. I retired in June. Following diagnosis (metastatic breast cancer) I went to a Naturopath for guidance on diet etc. Alternatives are not cheap so I discontinued after 18mths.  In summary eat fresh and fat free. I consider my intake of anti oxidants - leafy greens and purples - easy! Avoid fads, just learn to identify what seems to work for you. I take some supplements some times, all a bit haphazard. I am strict about parabens and other potential toxins which means reading every label, I am also strict with shampoos and hair colour, wear very little make up and no nail polish (Herceptin has made my nails soft and flaky). Its important to keep the lymphatic system moving and daily walking, weights or swimming will be adequate. These chemicals are very strong and although they keep us alive they do compromise the immune system so diet is very important. xBeryl

Thanks Kath you have certainly made it all seem clearer and I was thinking it may be still from chemo and related to radiation also. I do just need to give it more time and I will definitely discuss it with my doctors. I did mention it to the radiology nurse today but she doesn’t know a lot about chemo and herceptin so I’ll speak to my doctors. I also think I need to ask about my diet and medications to help me through it all. Thanks for your reply x 

Nausea and diarrhea could still be happening due to latent chemo side effects  and also due to the radiotherapy. Neck nodes are so close to the oesophagus so irritation could well be happening causing increase internal shedding which could result in loose bowels, swallowing difficulties and nausea. I think you need to just get through this next 2 weeks. It will take at least a month to settle and only after this time will you be able to be sure what's causing it. Meanwhile discuss your symptoms with your treating team as they may have ideas how to settle it. 

I had a really unsettled tummy and bowel for a long time after chemo. I couldn't eat spicy or citrus foods for months after. I still have limited tolerance to dairy foods. Medications that assist with reflux increase bowel motility so if requiring this it may be contributing also.  I continued herceptin  (as long as my heart allowed) without too much issue so I hope the same for you as it all sounds pretty miserable presently for you. Kath x

I believe some people have experienced diarrhoea, but I had a full year of herceptin with no side effects that I could detect. I haven't had radiation but it's possible the reaction is in part from that. At least you may have some better idea of cause after you finish radiation, which isn't much to cheer you, I agree. I hope it clears up very soon.