Well done also for getting through 1st cycle Lai . I had my 2nd cycle of 8 yesterday. The steroids affected me badly too so now have a reduced dose. If you keep a record of any side effects it’s really useful to discuss these with the oncologist the next session. Mine has really made a effort to alter my medication to reduce the issues I was having. I had my head shaved the day before my 2nd chemo. I knew it was time as whenever I put my hand to my head it was just coming out and my scalp was itchy. I’m so glad I did- it was empowering for me as others have said and I’m almost used to seeing myself in the mirror at home! I wear scarves/turbans and hats when out and about- it’s quite fun experimenting with different styles.
Hi Allypops I have a Avery similar diagnosis to you Stage wise and ER positive at 8/8 Original tumour bigger than originally thought and then I found another on the other side which was confirmed as a tumour by MRI and further biopsies. I’ve already had Breast preserving surgery which worked on the left but had a re-excision on right which found further cancer cells so I will also need a mastectomy after 4xAC and 4xtaxol. I’m 50 and have a 9 year old. She’s been great but a little more concerned now the effects are more evident. I’ve tried to reassure her that this just shows the chemo is working. Good luck for Friday and all others starting soon. Please feel free to ask me any questions and I’ll see if I can help.
Willie it’s great you have minimal side effects and might be able to reduce no of cycles. Fingers crossed.
Sue thanks so much for sharing your encouraging post chemo hair experience.
Hello all, have my second Chemo tomorrow on the mobile Chemo bus, my first Chemo i was a bit tired and a sore mouth, but that was all. Good luck to all of you going through treatment. It really lovely that people are sharing their experience,
PICC line went in Tuesday - which was painless at the time, a bit achy yesterday but now fine - now ready for my 1st EC tomorrow (I think!).
Good luck to my fellow chemoers (this should be a word if it’s not IMO), fingers crossed that it treats us all kindly xx
I’m trying to straddle the June and July starters threads, as I had first cycle of FEC (after that TJP) on the afternoon of 29 June. Just realized that I hadn’t updated here, for those who aren’t reading the June thread.
Last week I noted that I’d been pretty SE-free. But then, last Saturday, my Day 9, my temp started to climb – first 37.5, then 37.7 (my usual temp is around 36.2-36.4)… so I called the chemo hotline. Only other symptom was dull lower back pain, sort of like I’d get with PMS. So the onco on call had me monitor with a plan to call back if it went up. It was the hottest day of the summer thus far, and there was a chance I was just overheating, though I was taking it very, very easy and drinking about 3 litres of water a day. But my temp kept rising.
When I got a reading of 38.2 under the tongue while on the phone with the onco, she had me go to A&E. Bloods came back and I was neutropenic; they admitted me to hospital for 48 hours of IV antibiotics, more filgrastim injections (I did them myself at home Days 1-5), and close monitoring while in an isolation room. Thankfully, the temp didn’t spike again, and I was discharged with 5 days of antibiotic tablets.
All this to say: Please do watch your temps, especially as you start to approach your white blood cell trough in Days 10-14. Febrile neutropenia is serious. Stay safe!
1st of 3 EC went well today. They have given me 3 types of anti-sickness tablets & a pack of steroids to take over the next few days. Also I have the G-CSF injections to do for 5 days starting on Tuesday - terrifying thought for a major needle-phobe (okay, so that’s not a real word) like me but I will try to do them myself and ask my GP if they will do it as a backup.
I slightly wavy kind of head straight after the chemo (normal on C the nurses said) and on my way back to work I was sweating like there’s no tomorrow! Probably a mixture of the heat & beginning of menopause but I’m going to monitor my temperature just in case. Also I’m very windy for the first time ever! Anyone else had that?
I feel a little weary now but that’s probably because I went straight to work afterwards and, although I tried to take it easy, I may have fallen into my old ways and worked at normal pace. This is going to take some time to change but hopefully I’ll do it before my body has to make me. A lazy(ish) weekend is on the cards I think.
Take it easy my fellow chemoers xx
Iammstillme???well done, 1st one drink plenty of water and take meds as prescribed, if antisickness doesn’t work, ring your rapid response number, they’d rather get you on meds that will prevent any sickness if they are not working. Pace yourself and even if you’ve no temper erasure but not feeling right ring the number. Days 7-14 are your nadir days when neutrophils are at their lowest and you will need to be really careful and usually week 3 is everyone ???Week, before you bounce off the walls with steroids again. For the jabs, grab a bit of belly fat, wipe with antiseptic swab wipe if you want and plunge needle in, press down till you hear the click, this will bring needle back up on itself and voila, all done, takes less than 5 seconds, do alternative sides of belly button, once you get 1st one done it’s ok, promise, I was ???about needles too when I started chemo, but promise it’s really ok and doesn’t hurt ??shi xx
Well I thought I would be joining this July community, but after seeing my oncologist on Wednesday, for what I thought would be my appointment to start me off next week, I was told that I need to wait another couple of weeks to go back and sign for consent. Then chemo may start ‘in another couple of weeks’.
I just want to get on with all of the treatment, and I know it’s not going to be a walk in the park… has anyone else had these delays? Sorry to be moany! I’m just getting tearful and so frustrated.
That has already reassured me… I feel like I am on the starting line for a long and gruelling race, but things just keep stalling the start. I do want to lose some weight (not loads, just a bit…) get ready and prepare as best I can, so yes, I will take your advice about meals and head coverings. I’m especially concerned about having steroids, as I know they can pile weight on and as I already struggle with weight, it’s seems just another thing to add to the cancer. I do read the forum with interest, as people here know the ropes. I’m finding that people I know are all over their own ‘shock’ at my diagnosis, and they so often ask ‘when do you start the chemo?’ but then they seem to lose interest when I say I don’t know yet!! Thanks for reading xx
Hi Georgie. I have lost 3kg since starting chemo, based on the hospital records before each session. I find I don’t have much of an appetite in the first few days, then it gradually comes back. A bit like being on the 3:2 diet for that week. Also, I have lost my appetite for sweet stuff and am drinking less alcohol. My chemo nurse said he expected me to lose weight. I haven’t found the steroids increase my appetite because they are taken when you are feeling nauseous so don’t want to eat.
Thank you ktk too; I really appreciate your reply.
Can I ask another question here please? When I saw the oncologist, I asked about having a further scan, as surgery showed a grade 3, HER2+ve, hormones -ve 29mm tumour and 2 lymph nodes involved plus some micro metastasis. The biopsy was taken in late May, so I asked about another scan as it is now at least 6 weeks ago. Have had a few pain and breathlessness episodes so am a bit concerned about possible further spread. The oncologist started to shake her head before the end of my question, and said they would not be doing any more scanning… and yet I hear on forums that others have had these. The tumour grew 4mm in about 2 weeks so of course I am wanting to rule out anything else before chemo. I am going to speak to breast care nurses too on Monday and also seeing my GP about the extra symptoms…
Hi Georgie. I would ask your BCN for advice tomorrow but I doubt that further scans will change your treatment. If you are having chemo before surgery they will be aiming to shrink what is there and it will also get any new nasties. I think they will scan you after chemo to check that what was there has shrunk and will find anything else if it is there. I know it is hard, but try to keep positive and have faith that they know what they are doing!!? xx
Hope all is going well for those having chemo this week.
Welcome Georgie, I understand your frustration at wanting to get things going with your treatment. The waiting is very hard and I too convinced myself other things were going on and the stress of this causes more anxiety. I asked for a head scan and they agreed without quibble and it all came back ok, headaches and neck ache then went away ?. Hopefully you will get a start date soon, mine was a wait from 2nd May to 29th June which seemed an age. Chemo before op for me with one under my belt now and pleased it’s started…
I have felt well this week but had to brave the shave as handfuls of hair was falling out last night. We both had a glass of wine and my husband very gently shaved it off. I did have tears and have to admit it was hard to look in the mirror at first. Today I donned my wig and went to B&Q it was fine just a bit hot, plus I kept thinking it was wonky ?.
Booking a cruise for the week after the next session to celebrate my birthday, making the most of it whilst I am off work and thinking why the hell not try and enjoy the good weeks.
Hope you are all having a lovely weekend.
Hi Karen. Well done for braving the shave. I found it very liberating and it really was a family affair with husband son and daughter all having a go! If you would like to pop over to the June thread you will see some of us who have posted pics to encourage others. Don’t forget the sunscreen!! Kxx
Many thanks for the replies; it is so so good to be able to share on here isn’t it!
Do many or any of you have sleeping problems during chemo? My treatment is to be FEC T with herceptin and bi-phosphates with, and radiotherapy too after chemo. No hormone involvement. I’m having sleepless nights already with the stress, and the oncologist suggested I I obtain some zopiclone from my GP. Are there any rules about who supplies drugs? (I mean GP or hospital?) I’m off to the GP tomorrow morning to ask about a few health niggles I want to check out before I start the chemotherapy, e.g. A rash that is very itchy and close to bleeding, and may be an infection risk. Just want to go in to all of this with as much of a head start as I can…
And well done one to those who have braved getting shaved! Let’s all hope that we only have to do all of this once in our lives!!
Hi Georgie
The only time ladies seem to struggle with sleep is when you have to take the steroids. For me, I had to take them for 3 days… The day before, on the day, and day after. It really is difficult to sleep then. And I felt sooo hungry! Found myself getting up at midnight, craving sausage sandwiches!
Xx
that sounds great I will definitely take a look.
drink plenty of water and take meds as prescribed, if antisickness doesn’t work, ring your rapid response number, they’d rather get you on meds that will prevent any sickness if they are not working. Pace yourself and even if you’ve no temper erasure but not feeling right ring the number. Days 7-14 are your nadir days when neutrophils are at their lowest and you will need to be really careful and usually week 3 is everyone ???Week, before you bounce off the walls with steroids again. For the jabs, grab a bit of belly fat, wipe with antiseptic swab wipe if you want and plunge needle in, press down till you hear the click, this will bring needle back up on itself and voila, all done, takes less than 5 seconds, do alternative sides of belly button, once you get 1st one done it’s ok, promise, I was ???about needles too when I started chemo, but promise it’s really ok and doesn’t hurt 
