I have been through chemo for inflammatory breast cancer and my experience was that the first round was ok, it took them a while to get the canula in me. I was sat in a room with about 5 other patients and it took a long time for all the drips to be completed, I ensured I took a book and food and water, however, at the hospital I was at they regularly offer you food and drinks. I would suggest take something to keep you entertained as it can get very boring sitting there. The second time I went I had a reaction to the chemo, very quickly my face felt hot and tingly, I told the nurse I felt unwell and they reacted quickly with anti-histamines, the reaction did cause a awful intense feeling in my chest and made me feel shocked but after the histamines I soon settled and felt ok again. They say most people have an allergic reaction either the first or second time around. After the second dose my hair started to fall out, it wasn't painful but it did start to suddenly fall out in bits ( I did not opt for a cold cap - as this means sitting there for more hours, they aren't always successful and can cause migraines). I found my that my taste changed and I got chemo mouth where I felt a chemical taste in my mouth and I experienced flu symptoms and very tired and I lost my appeitite. Sweet stuff was yuck, I did really seem to like cheese though.
After my third round when I was at home I felt awful like I was having a heart attack, I felt very cold and started to cry, I felt unbalanced when walking and as if everything was a struggle, I called up for advice and they told me to go to A and E straight away as I had nutrapina, and had to go to hospital and be put on a drip. It was a bad UTI that they believed caused it. To be honest the wait in the A and E was the worst bit for me. Round four was the worst for me as I had gastroentritis that lasted for 3 months, I had severe diarrhea and vomiting and was stubborn as I did not want to go to A and E, but in the end had to, I ran to the toilet up to 30 times on one day, I ended up going to A and E and on the drip and was on antibiotics several times. I then had to go on a BRAT diet so was eating crackers mainly and tinned potatoes with yoghurt, probiotics, and taking mint and oregan capsules to get my stomach to stabilise. My hair also all fell out. Not everyone reacts and to be honest although I had a reaction I don't think it was anything I didn't cope with. The diarrea and vomiting was bad but nothing I couldn't cope with and after the A and E wait the treatments I received helped to stabilise me again. In terms of my hair falling out I thought I would be devastated but actually I wasn't, I still feel like me and no one has stared at me when I have been out, I was really surprised as I really did think that losing my hair would emotionally impact me.
They thought I was on too high a dose of filgrastim which could have caused some of the reaction, when I told them this made me feel ill they didn't listen at first but when I was in hospital they reviewed the dose and decreased it. I was meant to have 6 rounds of chemo but because of my reaction they reduced it to 4. I was on a high dose due to my type of cancer but some people aren't on as high a dose and some people dependent on their cancer type can take it as a pill form I believe at home. The main thing is when you are having chemo they are monitoring you in the hospital so they can support you, when at home it is important to have someone that can support you and transport you to hospital if need be, but to call the chemo ward asap in regards to symptoms so they can advise you appropriately. I tried to brave it out for as long as I could without seeking advice which was rather silly because I thought that some of my side effects where normal with the chemo when it was clear they were more concerning.
I am now on Phesgo maintenance and I get aches in my knees, my head feels woozy and I still have heavy discomfort in my chest. My stomach feels stable, chemo mouth is pretty much gone although some foods taste a bit different, I seem to taste pepper more strongly. It sounds like I had a bad time on chemo which I suppose I did but not everyone does, and to be honest yes I was ill,.the diarrhea and vomiting for me were bad due to the gastroentritis but it was survivable and on the plus side I've lost loads of weight. The healthcare professionals should offer you loperamide for diarrhea and anti sick medication as well, some of which did take but probably not often enough, as I tried to brave it. Overall, I think the chemo is nothing to be scared of, I've had worse effects from the flu and from a hang over in some instances, the good news for me was that my chemo has shrunk the cancer a hell of lot to a point where it was miniscule on my mammogram. Additionally, my hair is growing back now albeit it is like badger hair where it is white in places. I still get achey knee joints, achey teeth and feel my urine is stinging a bit whilst on Phesgo, an uncomfortable breast, woozy head and wooshing sensation in my ear, but overall it's ok, but then I am a pretty sedentary person and have given up work and driving, although I understand some people continue to work through their chemo and are able to do so..The part that terrifies me is the masectomy surgery that I am advised to have, then the reconstruction in which it is proposed I get a diep flap where they create a new breast from my stomach tissue, so for me personally I am considering staying on Phesgo and Tamoxifen for a while, although I am aware of the risks of this and of not having surgery.
I hope this message doesn't scare you because everyone reacts differently but also prepares you for some of what could happen. It is advisable to drink plenty of water and if you get diarrhea I would advise SIPS is a good product to add electrolytes back into your diet, probiotics and herbals such as mint and oregano was good for me, as I believe chicken soup was also. The team should check your heart and take your bloods regularly as well to ensure there are no issues. If you haven't already it is a good idea to get a blood pressure and heart rate monitor for at home, which can be useful. Each round I was in the hospital 6 hours at a time and the staff ran late at times so be prepared for a bit of a wait. If you want they can insert a PIC line so they don't have to put in a cannula every time, but for me I didn't want a PIC line kept under my skin
Everyone is different but it is survivable and you will get through it. It's also nice to chat on the ward to others as well when you go through chemo for added support and info about their experiences. I am wishing you all the best, Rose.
I am glad to hear that you have now finished your chemo, but note that you are worried about having a mastectomy. I have had 2 bouts of cancer and 1 of pre-cancer, all within a year of my original lumpectomy for stage 1, Pure Mucinous Breast Cancer.
Second time around, I had a double mastectomy and I found this much easier to recover from, than the lumpectomy. Unfortunately, I was not a suitable candidate for reconstruction, so I have remained flat. I manage well with an assortment of prostheses for different activities. It is now 15 years since I was first diagnosed and I still lead a busy and fulfilling life. I hope that this helps to reassure you that it is worth doing, despite your reservations. Do you have a date for surgery yet?
Please keep in touch and let us know how you get on. WE are always here for you. Kind regards,
