Thank you ladies! Wow- I can’t believe the differences in oncology opinions. My oncologist is very pro trial and I was reassured by that but then I kept seeing others who were given different opinions.
I dread losing my hair. I’ve no idea why Belfast doesn’t do cold cap- how behind the times we must be!! I think I’ll do same- brave the shave. I don’t have very thick hair as it is so I’m super worried that it will grow back even thinner or not at all.
When you mention the LVI, that is something that makes me think chemo is worthwhile. I haven’t been told if I have that but I also wasn’t told about extra capsular extension that I had. I only asked the oncologist after another lovely lady on here mentioned it and then she said I do.
I struggle with all the information and new terminology. I didn’t realise how complex breast cancer is! So I’m set for chemo in one weeks time. Thank you for sharing your experience so far ladies, it settles my mind a bit
Just to mention that I’ve requested and recieved copies of the pathology reports from both surgeries, you could always do the same. There are guides online about how to read them. It helped me ask good questions.
How is everyone today ? I had an oncology appointment yesterday to confirm my start date of next Friday is definitely going ahead . Three weekly nab-paclitaxel for four cycles … the oncologist was as old as the hills and didn’t even know how to get his pc to print the consent forms off !! Apparently you don’t routinely get steroids with this regime but I said I had hyperemesis in my pregnancies so he said I was more likely to feel sick and write me up for steroids … nerves are really kicking in now !
However I’m off to Manchester tomorrow to see Kasabian so that will take my mind off things … I hope
Hi @sam3. I think we are all a bit different. I was told anything over 3 nodes meant chemo. I had 6 out of 17.
I started EC two weeks ago. Any nausea was completely controlled by the drugs. I felt the need to graze to keep my tummy settled but that was it. I had a strange taste in my mouth for about a week and the first week, I felt whacked. It took me to day 6 not to need an afternoon crash on the sofa. I didn’t have any side effects from the injections other than stabbing myself in the finger!
This week, I feel perfectly normal. I have normal energy levels and have worked from home all week. I am trying to drink plenty of water (I did this before the chemo and after) and get out for a decent walk every day.
I’ve got my second round next Friday if my bloods are ok. I cold capped the first time, even though they said it wouldn’t work with EC. I think I might be starting to shed a bit.
Hopefully you will cope just fine - and get on with your life. xx
@arty1 sounds fabulous - have a great time. Not quite the same but I went to the O2 to see Crowded House (!) just before I started and I’m really pleased I did for an evening of normal life!
@sam3 I was browsing the Cancer Hair Care website today and came accross this company who rent cold caps globally that you can take to your treatment yourself. It’s expensive, but I thought it was worth mentioning: https://penguincoldcaps.com/
Looking at your other post about the trial , personally I’m surprised they offered it to you with node involvement , that seems to my eyes a tad risky … I think you d made the right decision to have chemo as at least you’ll know that you d thrown everything at it . In your shoes I’d have chosen chemo x
@flojo , it looks like a few of us are going too be on the chemo chair next Friday x
Ah crowded house , I used to love them back in the day , I bet it was a great gig too and I bet it did you the world of good. . It’s so important to still have things to look forward to x
I had my surgery 11th Sept and developed a seroma in my axilla on 26th Oct. It became infected and I had to have IV antibiotics as an inpatient.
Just telling you this cos I know how frustrating it feels when you just want to get on with the chemo. Overall, mine was delayed by about 2 weeks which in the grand scheme of things, isn’t long but can feel a lot longer whilst you’re in the middle of it!
Take the time to fully recover and do some things that make you happy in the extra time you find yourself with. I went to the zoo and spent ages just marvelling at the giraffes lol!
I had my first chemo today and it went very smoothly, even the scalp cooling which I’d anticipated would give me a headache - but didn’t.
Yes, it was really good. Very normal but also a bit abnormal at the same time. It’s easy to forget to live at the same time. My GP told me to try to still enjoy life - easier said than done but there is something in the sentiment. x
@krissykochanski how did your situation develop? Did you try tablets first without success? How long did you need IV antibiotics? I’m asking all the questions because I’ve been given a new chemo date 7 days later than the original one, so I’ve got 10 days to get myself well and I want to make sure I escalate accordingly if I’m not responding to the tablets (I had flucloxacillin first, now on doxycycline). x
@flower5 I was given co-amoxiclav straight off and that knocked it out of the park … I did ask about flucloxacillin but was told it’s not usually strong enough for a seroma infection so maybe that’s why it didn’t quite get rid of it ?
Mine developed very quickly. I felt ‘not quite right’ infection-wise on the Friday morning and rang my BCN for advice. She said to call back later if I wasn’t any better. By the afternoon the site was swollen, hot and red and so I phoned again and said I’d like some antibiotics. By then, the Dr who could prescribe had left for the weekend so the BCN advised I spoke to my GP. I just managed a squeezed in appt with the GP who said that I needed to go to the hospital for IV antibiotics. Long story as there was some argy bargy between the hospital Dr and my consultant surgeon but I stayed in a week on IV flucloxacillin plus another one which I can’t remember the name of. I was discharged with same drugs but in tablet form and had to take them for a further week. This delayed chemo by a week then I was delayed another week waiting for an appointment for an echocardiogram.
In hindsight I wish I’d asked for the antibiotics on the Friday morning but we just act on the information we have at the time don’t we? If you don’t respond as you feel you should, I would ask for escalation. But remember, if you do end up delaying your chemo by another week, it’s not the end of the world - honestly.
Always do what you feel is the right thing for you. (Sorry if that’s a bit wishy-washy lol x)
I was never told by my surgeon or oncology team about the LVI I read it on the paperwork myself & had to ask why they didn’t think to mention it to me!!! It’s so frustrating sometimes x
Thanks @arty1 and @krissykochanski, these are useful references. I also missed an opportunity to get treated sooner because I had my covid and flu jabs just before the infection came on and thought I was suffering side effects.
Hi everyone. Hope your all well. We’re all probably started or waiting to start. I’ve been waiting along time to start . My mastectomy in August but the positive information I’ve been given is that the grade of cancer in my breast and lymph was grade 2 slow growing and was cleared from the breast leaving the lymph’s to be cleared up by radiation and chemotherapy. They pushed me back for chemo as priority 2 as it’s a clean up scenario now for rogue cells and anything in my armpit followed by radiation and I qualify for a new drug as a bolt on Verzenious for hormone positive cancer. I understand the wait has been long but they did explain that Lukemia and life threatening cancer treatments would be scheduled in as priority before me and absolutely as they should. My cancer is not going anywhere or developing outrageously but the wait is over and I start my first session on Wednesday next week. I’ve been for pre assessment today and had a tour of the ward and met the nurses and although it’s all a lot to take in I just want to get started now. Waiting has played havoc with my anxiety and caused many sleepless nights. I feel reassured I’m in the best hands and even if I react to it that can be managed on the day and if not successful abandon and my treatment plan can be changed. Steroids and anti sickness drugs will be given. The only thing I have to overcome is injecting myself with the bone marrow supplement. But I feel brave if I can do the mastectomy and the chemo I’m sure I can jab myself in the stomach. Much love to you all xxx
