Hi Trrvavers and welcome to Cancer Chat.

I'm sorry about the side effects you're currently contending with. It sounds very tough.

Hopefully some of our members will offer their tips and advice to you soon but if you'd like to have a chat with one of our cancer nurses you can give them a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Do be sure to let your medical team know what's going on as well as they will be able to make this easier to manage.

Kind regards,

Steph, Cancer Chat Moderator

Hi, I have HER2 positive breast cancer. I've had three chemo sessions of TCHP, I have three more to go and then I'll have surgery to remove what's left of hopefully shrunken tumour. I've had a tough time with two weeks after treatment feeling awful, and then slowly feeling better for third week, and then it's the next session again. I'd say the worse has been nausea the first week, so didn't feel like eating, and then second week no nausea but awful diarrhea, and a disgusting taste in mouth when trying to eat or drink. It was like torture feeling so hungry, and imagining how tasty food was, then wretching when it tastes disgusting so couldn't eat. Even drinking made wretch. I have my next session on Wednesday and I'm feeling depressed about it already. I've been told that I'll be on Herceptin injections every three weeks for 18 months after. I've also read that there are side effects with it too. One being taste change. I couldn't cope with it. I really don't want to have them. But, have been told by Oncologist cancer will probably come back if I don't have them. So, I'm thinking after 18 months it may still come back. I don't want to carry on with lack of quality in my life. Living longer but unhappily is not a thought I'm relishing and wonder if it's worth it. Feeling a sense of hopelessness today. Side effects are not so bad now just pins and needles in fingertips, and having antibiotics for urine infection. Hope your side effects have eased. 

Hi, I also have Her2+ breast cancer, unfortunately mine was diagnosed as secondary straight away nearly 6 years ago. I could identify with everything your said about the eating problems,but hopefully can make you feel a bit better and let you know it is not the Herceptin that causes this problem but the docetaxel, these awful side effects should stop once youv'e finished it. I've had over 100 rounds of Herceptin and Pertzumanub with luckily virtually no side effects, definately no taste changes. I know its grim, I couldn't eat or drink for 2 weeks after each treatment, family would try and tempt me with all my favourite foods but couldn't understand why I could eat and how vile everything tasted, the only thing I could tolerate was lemon sorbet, gives you some fluids as well, not ideal but better than nothing, things would return to normal the third week then I would eat like I was in an eating competition lol, hope this helps, its tough but there is light at the end at the tunnel, good luck with your future treatment, stay safe, kind regards Lynn

Hi Lynn, that's reassuring that it's not the Herceptin that's causing taste change. The Docetaxel, I was told was responsible for the diarrhea. I was hospitalised after my second session because of the excruciating cramps that accompanied it. But, I managed to keep it under control with Imodium this time. 
 

My tumour was 6cm and had spread to lymph node, but luckily nowhere else after scans were carried out. 
 

I find lime Twister lollies were easy on the taste buds too. I've also got some Complan in to try and drink for next session.  
 

Thanks for replying. I feel better now :) 

Karen 

Hi Karen, glad I was able to make you feel a little better. My tumour was also 6cm which is quite large, but had already spread to the liver and bones. I am very well and fortunately no cancer can be detected on the 6 monthly Ct scans. Herceptin is an excellent treatment which I have every 3 weeks, which hopefully for you will be a cure.

Take care

Lynn

Hi Lynn, so glad to hear your scans reveal no cancer. I'm mentally preparing for my next chemo session on Wednesday. Have felt quite tired today, I've not felt much fatigue since start of treatment. I attempted to do a bit of cleaning but had to lie down after 20 mins. Good job my husband helps out. And, the antibiotics have made me feel a bit queasy too. My appetite has been quite small this week so haven't put weight I lost the first two weeks back on. I'm hoping the Complan will help after next session. Somebody said the injections of Herceptin can be painful? I've heard there is a cream you can apply couple of hours before to numb area to be injected. I'm a bit of a wimp when it comes to injections. 

Hi Karen

I was diagnosed with HER2 positive breast cancer this time last year. I finished chemo in September the Docetaxel was the worst of all the treatments. Like you I couldn't eat, everything tasted disgusting. I did find that after treatment was finished I had gone off of foods that I used to really like. Think it just reminded me of treatment and the side effects ‍♀️. I have been on trastuzumab since and I only really get the odd mouth ulcer after each treatment, they tend to only last for a day or two. I only have 4 more trastuzumab to get and that's my year finished. I wish you well and good luck for your next treatment. Take care and stay safe. . 
 

Karen. 

Hi Karen, good to hear! Glad your nearly finished with your treatment. 
Karen 

Lynn, i'm also on Herceptin for the long term. Were you given any meds to protect heart health while undergoing Herceptin? 
thank you 

Hi, No I have never been offered any medication, I just have a echocadiogram every 4 months, which I had last week, so far so good, hasn't had any ill effects on my heart.  Regards Lynn