10-01-2019 07:00 PM
Hi DiKat. I’m okay thanks. Managed to get to Bluewater shopping Centre early today but had to have a lie down this afternoon to get over it!
Bloods and PICC dressing change tomorrow in readiness for chemo on Monday if all okay. I have one more EC after that then 4 cycles of Taxol. Got 4 weeks Radiotherapy after that. It seems relentless. Never mind it’ll fly by!
10-01-2019 04:32 PM
One more fec then move on to 3 cycles of Taxotere/Herceptin/Pertuzumab. I've been trying to avoid reading about these but keep stumbling on things that say they're worse. Yikes!
Cant believe I've already started with throat problems again this cycle and it's only day 2. My voice has nearly gone and I'm being really careful, cleaning teeth regularly with soft tooth brush, using mouthwash and drinking properly. I'm never sure if it's coming from my throat and or up through my gullet from my stomach. Have long standing bowel and digestive issues so this is a weak area for me. I already take esomeprazole 20mg twice daily and asked Oncologist on Monday if I could increase whilst on chemo and he said no as would cause issues with constipation!
How are you doing? Xx
10-01-2019 01:00 PM
10-01-2019 12:57 PM
Hi Pastamissus. I didn’t mean to imply that Manuka honey will help boost neutrophils as I know it doesn’t but it can help with some symptoms ie soothing sore throats.
10-01-2019 11:53 AM
10-01-2019 11:44 AM
Thanks for the info on hair loss, Drummerswidow. I have hopes that my few last bits will just take a dive with the next Chemo. At the moment it is good to have a few bits of fringe etc poking out of my headscarf. Today I tried out the stuff I bought to do my faintly-still-showing eyebrows. I'm not sure I have got it right - looks a bit menacing to me! But husband says it looks fine and maybe I had just got so used to not much definition being left that it strikes me more now I have tried to correct it than it would others.
10-01-2019 10:37 AM
Shi thanks for your info. Really valuable as always 😘
Rapunzel2018 like Drummerswidow says, the honey will be good for your throat if nothing else and Manuka is a really good one.
Jayne1966 I know what you mean about not realising there's so many types of BC. I feel we have to trust that the Breast Cons & Onc and rest of team have chosen the best treatment pathway that's specific to us.
Drummerswidow yes getting lots of comments about being positive and brave etc. I think people who haven't experienced this feel they need to boost us in this way and I've had some say if it was them they'd be in pieces. I do feel like this on some days but know I've got to hold it together and carry on.
Well had my 2nd Fec yesterday, yay 2 down. Had reduced dose so now at 80%. It really doesn't like me!!!! Felt the effects quicker this time. Totally spaced out, feel like I've been hit by a bus and mouth feels what I can only imagine what it would feel like to eat the bottom of a bird cage😂😂 have to see the funny side at times. Spent most of the night tossing and turning feeling cold to the touch but in a pool of sweat, sorry to sound gross. I'm just so tired, head is pounding but can't sleep. On a positive note feel less nauseous and managed a bowl of porridge for breakfast. I so don't want to lose any more weight, I'm 5ft 5, weighed 8st 11 beginning of Nov, 7st 12 now...might look good on a pert muscular young woman but not so good on a sagging and what feels like rapidly aging 49 year old 😂 Anyway got some biotene dry mouth toothpaste and mouthwash on it's way to me today so hope that helps a little with the dryness. Keep forgetting to ask for these things on prescription and really must start as not working throughout treatment and not entitled to any sick pay.
Sorry for the long post but trying to keep my mind off how rubbish I feel and gain such great support from these threads 😘
Don't let my experiences cause worry/anxiety to anyone else. I have always been a lightweight with medication and suffered side effects so to take such quantities now, it's hardly surprising!
Hope everyone has a good day, love & best wishes xxx
10-01-2019 09:01 AM
There's no proof that honey (of any type) helps the imune system. It does help wounds heal if spread on the wound though.
Re boosting neutrophils - the only thing that works is GCSF injections or reducing the dose of chemo.
10-01-2019 07:33 AM
I know how how you feel. Conversely I’m getting a bit fed up with people telling me how brave I am, how positive I am. I’m not inside and when I’m home alone I’m panicking about my finances as well as my health. I too look in the mirror, not too often, and I feel as if I have been mutilated. My scar is horrendous, I’m fat and I have no hair.
We we are all just getting on with it but it’s an uphill struggle most days. I’m finding people keep telling me how well I look! How am I supposed to look. I am making an effort and putting on makeup when I go out. Just want to scream sometimes xx
09-01-2019 11:12 PM
09-01-2019 10:52 PM
09-01-2019 10:03 PM
Thanks for telling me about the honey. Wonder whether Manuka would also do the job (it's easier to get hold of that). It's all rather expensive. I hope your appetite returns soon and that you'll be able to eat well and keep strong. My other half kept reminding me I had to eat on the days when I really didn't feel I could stomach much. Had to force myself sometimes but have managed to keep my weight stable this way.
All the best,
09-01-2019 10:00 PM
Yes, that's how I feel - not keen on the side effects but also don't really want therapy to be postponed (although to be perfectly honest I could do without any more therapies but who wouldn't want that). No, I haven't been given any G-CSF injections so far. Will ask my oncologist about them. I've read that neutropenia often is most severe in cycle 1, that gives me hope. Am a little worried at the moment but fingers crossed that I won't get an infection and that WBC will recover quickly. Ironically, the antibiotics I'm on at the moment can also cause neutropenia. Can't win, apparently. Another question to ask the oncology team.
All the best,
09-01-2019 09:45 PM
09-01-2019 08:43 PM
Hi Rapunzel2018. Sorry your chemo has been postponed. It’s funny, we don’t want the chemo because of the side effects but we don’t want it postponed either. A pain having more antibiotics. Are you not having any G-CSF injections? Hope you get your chemo soon and feel better x
09-01-2019 06:55 PM
Sorry to hear your chemo has been postponed Rapunzel2018. It is disheartening at the time but I realised I needed to be stronger than I was to cope with next cycle. Hopefully it won't be too long a delay! I know what you mean about taking lots of antibiotics...makes you wonder if they are still going to work if you desperately need them, not to mention the damage it does to our gut destroying healthy bacteria etc.(well that's if there's any left after the chemo!! In terms of boosting your immune system, my onc has told me to take a good general multivitamin. I had lost quite a bit of weight though and wasn't eating well from neutropenic sepsis cycle 1 so if your diet is good this might not be necessary. I have just got some of the life mel honey to try (very expensive) https://www.boldbeanies.com/blogs/news/dr-chris-recommends-honey-to-help-patients-with-chemotherapy I read this article but there are others that say it's a con. I will try anything once not to go neutropenic again so will see how I get on this cycle.
Good luck xx
09-01-2019 06:47 PM
09-01-2019 06:23 PM
I joined the club of those whose 2nd chemo had to be postponed today, potentially by a week, maybe less. Apparently my neutrophils/WBC are too low (that's what the pre-treatment blood test showed). Didn't get any boost shots with my first FEC but will ask oncologist about them for the next chemos to come. I've also been given a 10-day course of antibiotics since I developed a bit of a sore throat and some white patches on the tonsils, and the GP wanted to be safe rather than sorry. Oncolgy ward also phoned to check on me but decided not to call me into hospital since I seem stable; if I feel worse I have to call them, of course. Now I keep fingers crossed the antibiotics will help sort things and the WBC will go up so 2nd chemo can go ahead next week. I'm a bit tired of taking antibiotics, tbh - if I count both oral and intravenous antibiotics, this is the fourth in less than a month. No fun. Does anyone have any good ideas on how to boost WBCs/neutrophils - or any experience how fast they can recover?
At least I went out today wearing just a headscarf. No wig (although I quite like mine, I didn't feel like wearing it today). Felt a bit conspicuous but otoh I (and everyone else) have to accept that that's just how I look now - I guess it takes some time getting used to it. I think one or two people stared at me (at the GP surgery mostly) but most people didn't bat an eyelid, which is good.
All the best to everyone,