Breast Cancer Now Forum

Thank you both so much for coming back to me. It’s so helpful to have the views of people who have been through the same thing as me.   Ordinarily I just do as I’m told from a medical perspective. I’ve had my Covid jabs and had my booster this week, but understand why people have different views on this. Every fibre in my body is screaming “no” to taking Neratinib. I have until the start of January to decide as that’s the latest point at which I can start taking it.   I also seem to be carrying more weight around my tum as a result of Tamoxifen and no matter how much exercise I do or how carefully I watch my diet, it won’t go!  York-75 I feel your pain with wearing a bra. They seem to sit just where I get the pain and tried so many different ones. Costing me a fortune! I do think that ongoing aches and the sharp pain that you get Emma are normal, but it’s not easy to put the bc journey behind you when you have niggling reminders is it?  Thanks again for your guidance.   Karen x     ... View more

Hi Emma,   Thank you for your response. You are right about Tamoxifen not being as bad as anticipated. I seem to tolerate it quite well too.   I wonder if the trial your oncologist mentioned was Neratinib as it sounds very similar. My oncologist has really pushed me to take it and I did wonder whether it was part of a trial as it is still in its infancy. I have collected 1 month’s supply, but it is still in the drawer as I can’t bring myself to start taking it!!   I had a lumpectomy, chemo, radio and then Herceptin. I still have breast and bone pain on that side and the breast cancer nurses says this coo poop yes continue indefinitely and is an after effect of the radio. Does anyone else have this?   Karen x ... View more

I don’t know where the last 2 years have gone. They seem to have flown by.  It’s great to hear that everyone is moving on and doesn’t it feel good to have a clear mammogram?   Thanks for your responses about Neratinib. I have a further appointment about it tomorrow, but in my initial appointment my oncologist was talking about unpleasant side effects and having an emergency number to call “just in case” I had a flash back to the chemo days. I feel like I’ve come so far and for a very small potential benefit of preventing a recurrence, I’m not sure I want a year of feeling rubbish again.  Take care everyone. Soon be time for those cheesy Christmas movies which kept me going 2 years ago 🥂 x ... View more

Hi everyone,   Hope you are all doing great!  I’ve been offered Neratinib and wondered whether any of the HER2 positive ladies amongst us have been offered it or have any knowledge of it please?   thanks Karen  ... View more

Hi Everyone, I’ve not posted for a while and have just read all of your recent posts. It’s great to see everyone doing so well and looking so happy in your photos!  There appears to be a common theme of embracing life and enjoying it to the full. Holiday homes or permanent moves to the seaside all sound amazing. I’m sorry to hear you were outbid Carmen and hopefully something even better will come along.  After everything we’ve been through, I just want to travel and to cram in as many holidays as I can. We just need the rest of the world to be Covid safe first. Like you York-75 I am having Herceptin injections until the end of the year and am also on Tamoxifen for 5 years. Other than waking up with aching fingers and thumbs every morning, I seem to be tolerating it pretty well. It’s a small price to pay after the side effects of chemotherapy which feels almost like a distant memory. Is it just me or does  anyone else look back on the chemo and almost feel like it happened to someone else?! It’s such a strange feeling... It’s interesting to hear your thoughts on drinking alcohol after breast cancer as I’ve been doing a lot of research and what we can and can’t eat or drink.  I’ve always enjoyed wine and prosecco, but never drank excessively. When I started taking Tamoxifen my oncologist suggested limiting consumption to 7 units a week. 7 units is only 2 large glasses of wine 😬 !! I mentioned it to my GP and she said she had never heard of this and there was no harm in drinking in moderation as long as we don’t exceed the government guidelines of 14 units a week. So not sure which opinion is right! ...and don’t get me started on the minefield of whether grapefruit, marmalade and soya are safe for us 😂 Any findings on food and drink would be gratefully received... Cheers 🥂 ... View more

Hi NAJ, I painted my nails dark plum for my last 3 cycles which were Docetaxel. I took my nail varnish off yesterday and I have ridges too. I also have 3 half moons for each cycle. My hair is also growing faster at the back and sides and is coming back in my natural dark brown colour. The top and crown of my head is covered in white fluffy hair 🤣 ! Not sure whether this means I was white under my dyed roots or whether this is temporary and will turn brown! Hope everyone is doing well and that surgery went well on Wednesday for those having it... 😘 x ... View more

Thanks for the tips Carmen. Don’t know about you, but I have a cupboard full of products and medication I have taken or tried. I also tried false eyelashes (the magnetic ones). Took 40 minutes to get them to stick and then I looked like a pantomime horse 🤣 . ... View more

Hi Carmen, Despite still having Docetaxel since the start of the year, my hair had been sprouting throughout this part of my treatment. I have recently been using black castor oil followed by the Lush soap shampoo bar that Shi recommended and it seems to help. My eyelashes and eyebrows have thinned, but I have retained 50% of them. I’ve been using a serum on them overnight and every morning I wake up with new lashes. The lashes I have have lengthened as well and are less stubby. The product is called Liaison Lash and Brow Bond.  York-75 apologies I had confused Tilbury and Trinny in my last post 🤦‍ ♀️ . Clearly Chemo Brain is here to stay 🤣 Hope everyone else is doing well... 😘 ... View more

Hi Everyone, I had my last round of chemo last Wednesday and the side effects are beginning to improve. It’s so good knowing that I won’t have to battle oral thrush every 3 weeks going forward 🥳 I am on Herceptin every 3 weeks for the rest of the year and start Tamoxifen after my radiotherapy in 3 weeks time. UmLydia - I also feel that my face has aged, especially around my mouth for some reason. Not sure whether it is the drugs which have caused it or the stress of the last 6 months. I am hoping that I will start to look more relaxed know that the worst of the treatment is over! York-75 I have only heard good things about Charlotte Tilbury makeup and plan to spend some money on myself now as a reward for getting through the toughest period of my life! Strangely Upbeat - I love your merchandise! What a fabulous thing to do. Wish I was as inventive as you.  For those still having chemo, stay strong... this will be over before you know it and we can all move forward to the next stage in our lives 😘 ... View more

That's great news NAJ! As a fellow PICC Line use, I feel your pain.  It has been driving me crazy.  Every dressing has itched and left my skin sore.  I have my last treatment next Wednesday and hoping they take it out then or soon after.  Like you, I have also suffered with oral thrush every single cycle.  It will be lovely for you to have your mouth to return to normal and to sleep without the PICC Line.  Hope the radiotherapy consultation and vaccine go well. I have both tomorrow morning. As you say, onwards and upwards - enjoy the further steps towards getting back to normal  😊 x   ... View more

Hi everyone,   So lovely to hear many of us are having or have had their last chemo sessions. Still lots of things to think about, but not worrying about the side effects of chemo must feel good 😘 Having my 5th round and Herceptin as we speak. Last chemo is in 3 weeks time. Don’t know about everyone else, but I am looking forward to the day I can enjoy a soft cheese, pâté and smoked salmon platter washed down with a glass of champagne! 🥳 Thank you for the book recommendations and insight into Radiotherapy and Covid vaccinations. It helps to know what everyone else is experiencing.   I’m still hanging on to my thinning eyebrows and eyelashes, but I know there’s a chance I will lose them even at this late stage. Is that everyone else’s experience? On a positive note my hair has been growing back on docetaxel. It is fluffy and non-descript in colour and I resemble a baby chick, but hey it’s still very exciting!! Take care all and keep looking ahead to the future...x ... View more

Hi York-75, That’s so helpful to know and thank you for the advice. Knowing the end is in sight helps me tolerate the side effects. Each time I have a side effect I tell myself “I only need to feel like this 2 more times”!  The timescales you mentioned were discussed with me back in August, but that was before I discovered I was HER2 positive and wondered whether that might change things. I recall that we are both having Herceptin injections so it’s good to know that I am still likely to be able to have 5 radiotherapy treatments.  How did you get on with the Covid vaccine? I understand that we should all hear something this week.... x ... View more

Hi everyone, UmLydia, that’s great news about your tumour. It makes all the chemo suffering worthwhile! I had a lumpectomy at the end of August before starting chemo at the end of October.  I had three FEC infusions prior to Docetaxel and have two more Docetaxel to go before I finish the course. The next one is on Wednesday. I found Docetaxel made me more tired and my side effects lasted longer than FEC, but was so relieved not to have nausea and sickness! I had oral thrush once again and Docetaxel has also affected my stomach, making it bloated and unsettled for much of the time. I have also had nosebleeds and swollen eyelids! Counting down the days til the end of Chemo and just waiting for my radiotherapy to be finalised. Does anyone know how long the Radiotherapy will last for or are we all different? Hope everyone else is keeping well...x ... View more

Hi Umlydia,   So sorry to hear about your problem. It sounds awful. Like you, I get oral thrush after every treatment and have had to take a course of Fluconazole each time. I wonder whether this could also be used for your problem, but your rapid response team will know the answer. Your symptoms also sound like your condition may be piles which can arise if you have had constipation? I really hope that you can get something to treat it ASAP and that you are able to enjoy tomorrow. Merry Christmas and take lots of care x ... View more

So pleased to hear that everyone seems to be in a better place than they were at the start of the week! York-75 amazing that you have finished your chemo. Must be such a great feeling. x I start docetaxel and herceptin between Christmas and New Year. Hoping they are kinder than FEC which made me really sick and dizzy all the time. Stay safe everyone and make the most of the days where we don’t have the dreaded side effects. So looking forward to a “normal” post treatment life 🥳 x ... View more

Hi everyone, I’m so sorry to hear that so many are really going through the mill right now. I had my third round of FEC on Tuesday and was horrendously sick again and now have the usual side effects, but no comparison to having Sepsis or Covid. Seriously wishing everyone a speedy recovery and a smooth run for the rest of our treatment programmes. Take care and lots of love X ... View more

Hi everyone, I’ve not posted for a while, it amazes me how quickly the time is going and consequently our treatment programmes.  I’m due my final FEC treatment next Tuesday followed by 3 x Docetaxel and Herceptin starting on the 29th. It appears that we are all still affected in so many different ways, but are staying strong and making the most of those days when we feel more like ourselves.  I also felt incredibly emotional after my 2nd cycle and had chemo brain where I felt I wasn’t in control. Such a relief when that passed 😂 I have been walking a lot, still watching Christmas movies and some great dramas on Netflix and Sky. The highlight of my weekend was putting up the Christmas tree, eating curry, chocolate and a couple of glasses of Prosecco! Onwards and upwards! This will soon be over for us all and I’m excited for what the future holds. Stay strong everyone x   ... View more

Hi everyone, It sounds like we are all having lots of ups and downs. It helps so much to keep an eye on the end goal of being cancer free and a clean bill of health going forward 🥳 I spent the weekend doing lovely things, eating nice food, long walks, couple of glasses of Prosecco and of course, a few Christmas movies 😂 , but then Monday was another story... My hair had been shedding for a few days and I decided to wash it and horror upon horror, it became so matted in a solid clump on the top of my head and could do nothing to get the matted hairs out. Cut a long story short, my lovely mum came over and spent 3 hours trying to tease the hairs out of what looked like a bird’s nest. 50% of my hair came out on the crown of my head and I now look like Gollum in The Hobbit!!!! As if that wasn’t enough, I then had a call with my Oncologist who postponed my next cycle by a week due to the aches in my arm and now have to have a Picc line on Monday. I noticed that you have had one put in SU. How are you finding it? Onwards and upwards, just ordered my wig and going to have a big slice of carrot cake and long stroll with my other half to compensate for a tough few days 🥰 ... View more

Glad to hear you had a relaxing evening after your treatment York-75. I’ve heard the Queen’s Gambit is good. Have to say that Netflix is a Godsend in lockdown and in the midst of chemotherapy! On the subject of Christmas ChesterBrownBear I’m enjoying trashy American Christmas movies  as they always put a smile on my face and are so uplifting! Appreciate that we are 7 weeks away, but as we are living in strange times I think it is allowed 🥳 ... View more

Good luck with round 2 today York-75. Thought the photos with your daughter were lovely. x ... View more