Hi Kip and everyone...
i just popped on here as I find it helpful to see how people are doing further on in their journeys. I have been following yours Kip, as I am on FEC T plus Herceptin, but no hormones involved. Had 2nd FEC today.
My advice from being in hospital for any of you is: get some good earplugs, they are a life saver! Or in their absence, put your own relaxing music on your phone or tablet, and put your ear phones in to shut out the noise. I was put next to the nursing station in isolation, so it was incredibly noisy all day and night.
I pray that your neutrophils score shoots up very soon, and that you will escape colditz!
No one knows until being in hospital how scarey and lonely it can feel, and it can seem like a prison. Bless you.
Big hugs 🤗
Georgie Gee ❌
Well hi ladies, sorry ive been quiet but currently languishing in Casa NHS! Temperature was 38.2 yesterday rang hotline and got sent to A&E for few hours. Now isolated in a room until they come back up. Habing iv antibiotics but they are still 0.1. im so fed up, mh son got his gcse results todsy and i couldnt be there.. so shed some tears. He passed them all tho so immensely proud. Bloody bc takes all mh precious moments. Im hoping to see onc tomorrow to see if j can have injections to boost cells.
Im glad to hear you are all doing well, look after your mouths girls mine still hurts. My room is underneath a dementia ward so the screaming and shoutjng from one oftheir patients continues through out thd night, its so sad to hear a grown man screaming for his mother.
Take care ladies
I had a good night - went to bed at 11pm and woke about 7.30am, with a couple of wee breaks through the night - one of the drawbacks of copious amounts of water!
Steroids takens, just making breakfast now - porridge and plum compote. I've already unloaded and reloaded the dishwasher and tidied round the kitchen and walked the dog. Making the most of the cooler weather and feeling not too bad, which I'm sure won't last.
I think with the injections, it's luck of the draw with the approach the Oncology unit takes. So this time I've got three days of steroids, last one today, no Ondanstreton only Metoclopramide if I need them and the blasted injections. They've given me muscle ache over the last cycles and the Oncologist warned me that the T aches hit about the time you start taking the injections so I'm expecting a double whammy!
Hope your days are good ladies and side effects minimal.
In the chemo ward as I type.
Not going quite as well as I hoped. Appointment was at 9am but the computers were down. In the end my Herceptin injection came up to be administered at 12.15, but I have to have a four hour gap before T is administered in case of reaction. So what was already going to be a long day is set to be longer.
Saw the oncologist yesterday. She was encouraging about T but warned me to expect more bone and muscle pain especially as I'll still have the injections. She advised salt water mouth washes twice a day to help prevent mouth issues. Also to keep nails v short. I asked about painting dark, she said paint whatever colour I wanted but to use loads of hand cream and massage round nails to keep blood flow good. I asked about peripheral neuropathy, she said phone at the first hint. Have to say I'm most worried about that especially as I do a lot of handcrafts.
Hugs ladies, hope things are going well or improving.
@cdc My chemo ward let me push out my first THP from Thu/Fri to Mon/Tue so that I wouldn't be spending 3 days in hospital during the week my sister is visiting from the US. (She'd bought her airplane tickets before my first breast clinic appointment.) I've heard lots of people shifting things for holidays and special events. If you're struggling with food, there's a chance they'd consider the Haven class to be integral to your treatment.
I went on a Life Kitchen workshop in London earlier this month -- again something I'd highly recommend if there is a course or something similar in your area. Because the London workshop was at a restaurant rather than a cooking school, we partially prepared 2 dishes (our food was swept away to the kitchen for cooking) and got a demo of a 3rd dish. They can cater to vegetarians (and allergies, of course), but as there were no vegetarians in my group (afaik), 2 of our 3 dishes were fish based. The food was super, super tasty -- developed by the founder, Ryan Riley, whose mother had cancer, with scientific back-up from Barry Smith, a professor at University of London who researches taste and smell disorders. So I learned why I get that metal taste in my mouth (we have metal-detecting taste buds on the tongue which hang on longer than the others), that combining ingredients to create "synergistic umami" can overcome deadened taste buds, and why pineapple still tastes good during chemo (it stimulates the trigeminal nerve, bypassing deadened taste buds, etc.). And I again met a nice group of people, with a range of cancers, at various stages in treatment. One was even getting chemo delivered by pump all evening.
Life Kitchen has a gofundme page, since Ryan is trying to raise money to register as an official charity. And The Haven does nutrition therapy sessions and courses, as cdc mentioned.
On hypnotherapy (as I think I'd suggested it to cdc in a private message): a friend of mine mentioned to me that her father struggled mightily with nausea when he was going through chemotherapy and found hypnotherapy to be an immense help. She herself has since gone to a hypnotherapist for help in treatment of other health problems and said it has been very effective. I don't know if any of the charities offer complimentary hypnotherapy, but it's worth checking with your local Haven etc. to see what they might have on offer, or if they have specific practitioners in your area to recommend.
Hi Kimini and Welcome
it must have been so hard to find out you needed chemo after your mastectomy. I was devastated when I found out I’d be heading down the chemo route after the pathology reports from my breast preserving surgery and re-excision found more cancer cells. It’s just not what you want to hear is It?! I’ll be having a double mastectomy after my chemo as I have bilateral BC. I’m on a similar regime to you except I’ve had AC as opposed to EC. However, I’ll be following AC with 4 cycles of Docataxol every 3 weeks but no herceptin as I’m not HER +. I can really sympathise/empathise with your current feeling of continual nausea. I felt like that after my 3rd AC and all day yesterday following my 4th. None of my meds helped either and I took absolutely everything! I had taken a lower dose of steroids though as the emotional downer and rage I get when I come off them is intense. I’m back to full strength steroids this time as my onc say I need them as they work with the anti-nausea meds to make them more effective. I will try and taper them off over the next few days. It’s so hard to get the balance right isn’t it? Believe me I know how awful it is to feel nauseous all day and everyday and think it will never end! However, my nausea after the 3rd cycle did eventually subside and I was thankfully ok by the middle of week 2 so I really do hope you come out the other side soon. Sending positive vibes and hopeful hugs. I have a strange feeling in my head. I describe it as though someone is putting liquid between my brain and scalp so it is a sort of pressure. It’s periodic but unfortunately I haven’t found anything to help. It’s like nothing else I’ve ever experienced before so just hoping it goes when all the chemo is over and done with.
I have also been told that the Docataxol shouldn’t make me feel nauseous. That’s something although not looking forward to the sore moth and pain!
Goog luck to everyone starting T today. Kip glad your mouth is feeling a little better and hope that continues. thanks for all the great advice. I’m putting ice lollies on my shopping list in preparation, ktk I will head to the nail salon and get them to apply some dark polish before my first T cycle too. Is it ok to have a manicure beforehand? I worry that there might be a danger of infection if they cut back cuticles etc...
I’m feeling much better than yesterday which was horrible. I had anticipatory nausea to contend with. The thought of feeling nauseous overwhelmed me as Inwas travelling to the hospital and I started to feel very sick. Then the smell of the chemo ward made me nauseous before I even started the drugs. I’m looking into getting some hypnotherapy (great advice Reddi) to deal with it as it can become a serious problem.
Hope everyone has as good a day as possible.
Sending hugs and my very best wishes
Morning all, another day with the ole monster mouth.. still sore but i think slightly better but just tried weetabix and they taste like carpet! Oh dear.
Cdc sorry to hear the sicknese has hit again, i think this is your last EC? I havent had any sickness with T so hopefully you wont either. Frozen grapes sound like a good idea i have a try.
ktk is it T today? Good luck, eat as many ice lollies as you can whilst having it ... Its supposed to help with sore mouth .. ill be eating 50 next time 🍭
Oh well must get up and make an effort... Take care all Kip ,xx
Hi all -- I went to a LGFB workshop this afternoon, and like Kip I was floored by the goodie bag.
Our group today was small -- 6 people -- because of the holidays. One of the women was diagnosed 16 years ago, had a recurrence, but has had no evidence of cancer for the past 12 years. She's HER2+, so is still getting Herceptin injections, which is keeping everything in check. And our instructor was a beauty therapist who started doing LGFB workshops about 11 years ago, and 2 years in she herself was diagnosed with breast cancer. Both were very inspiring. And it was so nice to trade stories with others going through very different things, but in such a relaxed and supportive atmosphere. It was a really nice event, and I highly recommend it to everyone.
On a different note, it seems I might have cellulitis -- a little infection, possibly along my vein. They've put me on antibiotics and I got a booster pack of another 5 GCSF injections on top of the 5 I took immediately post chemo cycle 3 a week and a half ago. My bone marrow seems to be pretty damn stubborn. Only confusion is whether I've got cellulitis or not. I've got no temp -- just a slightly red, tender, and swollen patch on my wrist, below where the cannula was put in, that developed a few days after chemo and which has moved a few centimetres down my arm and expanded slightly. The folks at my chemo hotline are a godsend for these sorts of things -- they take everything seriously. It's meant 2 long afternoons at the A&E, and a nice little daily scribble on my arm to monitor the thing. But since I started antibiotics it's seemed to calm down, so it may indeed be cellulitis -- possibly from a paper cut that I treated with antiseptic cream!
In other words: Remain vigilant!
Michelle glad you are feeling ok now and getting out snd about and enjoying all things mermaid! Yes i agree with embolorry T is tough come back FEC all us forgiven
Hi, well done clare for gettkng snother chemo ticked off. Im sure tbe picc will be ok, id have 10 picc lines thsn this sore mouth at present. I feel absolutely fine everywhree elze just so sore amd burnt all wzy down moufh tonghe and fhroat. Mh daughter is 13 bht loves mermaids still anx shd has a tail tk swim in! Its great. I managed to geg tk LGFB todah and it was so good. Only
5 of us but really fun and as a novice make up person i got some good tips and loads of goodies anout £300 worth j teckon, even got perfume so would definitely recommend it!
Sounds fun Keli. I think j am finally gettjngt rid of the sore throat part but moutb still sore but i think might be improving , tongue fits in my mouth now at least even id it feels like the cat crept in and left something in fhere!!
Hi ladies sorry for my miserable posts dont mean to scare all of you starting T soon,. Thanks for all your kind words, i am sure it will improve slowly and i realised i have my LGFB course tomorrow and am determined to get there ... I coujd do with some pampering as the eyelashes are going too now. But definitely have some hair growing on head so will focus on this! Big hugs to you all and good lyck for any chemoers tomorrow xx
@Kip I hope you're feeling much better very soon -- and thank you so much for sharing your experience. My first of 4 T(PH) is 3-4 Sep, and I'm prepping myself.