did anyone mind that I had repeated some of your posts to my OH?
I have been so very very lucky with side effects with the FEC that I am concerned about going into Tax.
and his response, I think based on my reactions so far, has been not to worry. And I thought some of your posts would prepare him a little better, as they have done me.
And the gold stars for bravery go to Mooney & Jackie. Mooney I hope you are out of there soon, but agree it will be good to rest and Jackie, having had all your problems and now your big reveal you really are a true Kojak warrior!.
Mooney - how is the PICC line settling in, I had a few teething probs with mine and they are getting in some Duoderm for my next flush as I seem to have an allergic reaction now.
Other catchups: My OH also says I do to much in the good week - got the Tea & Chemo book and its entertaining and got good advice - Laxido being one of them (does anyone know how long it takes to work?) - the other was that each time she went for chemo she was given a side effect check chart and this my third FEC was the first time I had seen one, but I did get the Laxido and some sachets for mouth problems. So very helpful.
Many thanks to our good scouts with their sound advice on Tax - My first one not for a couple of weeks yet but so good to know what we may have to be prepared for....I read the bit about 3 days in bed to my OH - his response "nothing new there then!!" But he took onboard your words, so thanks for that too.
Love and very big hugs to the brave Taxers,
Hello fellow warriors from a very warm and sunny Spain.
Gaynor, welcome to our merry band.
Although I'm not on FEC-t (I'm just TC) my first round was definitely the worst.
My onc gave me Emend the second time and it virtually eliminated the nausea.
I start taking paracetamol on day 1 to be on top of the joint pains, and top up with Clarityn if necessary.
We all know how you feel, but you WILL get through this.
Mooney - I am SO sorry to hear you are in hospital. I know only too well how this feels - that neutropenia is a bugger. I'm hoping my GCSF injections will make me strong for my next cycle.
Ali - hope your 4th cycle went well.
Lou - Spring makes us all feel so much better doesn't it?
Today, as it is so warm here in Spain, and my 14th wedding anniversary, we went out for lunch with my beautiful daughter who is here for 4 days.
Now, I loathe and detest all of my hats, same with scarves, and the wigs make me really hot.
In honour of International Women's Day, and #BeBoldForChange I went out in my bald moth eaten state.
I also went half flat chested (no prosthesis) having decided that today the world could see me, as I am, with no filters.
I did get one or two stares, but it was worth it.
I'm feeling quite bolshy at the moment, sticking 2 fingers up at this cancer, and figure that if I can cope with how I look, why should I dress up and pretend I have 2 perky boobs, and flowing locks?
I cannot imagine wearing anything on my head in a couple of months when the temps will rocket to the 30s - so if folk don't like me as I am - they can do one!
yes a huge well done to Robin our number 1 scout. Good luck to Scotty and others having their first Tax this week. The nurse today for my FEC 3 said my next session which is a Tax one, would take an hour with an extra 30 minutes for pre med of piriton. But the medications are all different so it will be interesting to see how long it does take us.
Mooney was gutted to read your post, such a shock.....hope you home and feeling a bit better now.
Nicky it's so good to do the simple things and get so much pleasure from them. We all have down times but the ups seem so much more meaningful now. It was suggested a "Jar of Joy" might help me at my down times. Your lovely walk could be your first entry into the JJ, mine was a walk on the beach. Then when feeling down you take out a reminder of a good time, I know it's a little "American" but it may be of help.
Gaynor without the support of the lovely ladies on this forum my life would have been so different. Stay with us and get to know us or the advice to join the February forum is excellent, it's the going through it together that helps. Bad times and good.
Love and hugs to all, Ebimx
Well done Robin! Glad you've gone first. Welcome to the PICC club I've had mine since the beginning and have never had a problem with it. It feels a bit odd at first but it's amazing how quickly you get used to it. I bought an attractive blue plastic sleeve from Superdrug to cover it when in the shower. Makes life easier. I have the g-csf jabs. I'm needle phobic and cope with them so they can't be that bad! OH does them and they don't hurt. You can get achy bones as a SE and some people swear by taking Claritin - the hayfever tablet. If you come across any good tips fromthe T part let us know! Are you having herceptin too? Sorry can't remember
Hi Gaynor, nice to hear from you.
Probably I have been lucky as no major side effects. The first cycle felt the worse as I lost my hair on week 2. Although I knew it was going to happen, it really upset me and I felt very low.
Starting to feel more tired over the last 2 weeks but not much else.
I hope you get rid of your infection and start to feel better soon
Hi Nicky, certainly the spring days are helping me too!
Your pub lunch and walk sounds really lovely - such a simple/normal thing to do and I find now that I really appreciate those things so much more.
I have been to see onc. today and bloods are good for tomorrow's cycle 4 of FEC. Came away from the hospital overjoyed the next cycle is going ahead. How this damn C changes my thoughts - never dreamed I could get excited about a chem session.
You are absolutely right - that feeling would be good to bottle. On the good days in my cycle I almost feel a fraud when I feel so well. Really lovely to know you can see beyond the BC.
Take care - Lou xx
Just been reading the thread...Mooney you poor thing, i really hope you to start to recover soon, it is so hard trying to avoid all the bugs at this time of year. I was sleeping in the spare room last week to avoid my OH's nasty cold and touch wood i seems to have worked. i imagine it is very frustrating and disappointing to have treatment delayed as we all just want it finished but stay strong and sending you lots of love.
Good luck Scotty and everyone else who has treatments this week. Will be thinking of you all.
Ebin - i thought i was top of the shop for number of injections on 7! But 10 is very impressive. I also have to get my OH to give them to me..something he seems to enjoy in a strange way!
Yesterday was a beautiful sunny Spring day here so i went for a 4 mile walk in the countryside with my OH folowed by a tasty pub lunch. It was such a lovely day and for the first time since the start of this journey I felt really happy and positive and could look beyond the BC. It really was the opposite to how i was feeling last week lieing on the sofa recovering for FEC 3. i wish we could bottle up that feeling and use it as medicine to get us through the tough times!
Anyway, my thoughts are with you all.
love nicky xxx
Chin up chuck. Hope you get home asap. Sending you lots of love.
Looks like Scotty is our scouting party for T - all the best Scotty, keep your virtual buds updated when you can.
Bloody hell, Mooney. That's really crap. (Sorry, that was an unintentional pun).
I hope you get out out today and feel ok.
I'm off for my fourth EC. Looking forward to hearing from those of you venturing into the unknown. We've all got your backs.
I have 3 FEC and then 3 docetaxol, which is a bit scary. I have been really lucky with only a few SE's.
I am given 10 gcsf jabs each session, which wimp that I am have to get my OH to do for me!
It seems there are so many variations on our treatments which maybe down to the different hospital trusts and oncologists.
A friend of mine sent a card which said "Just keep going love!" and thats what I try to do.
As you did when you had to delay your treatment.
Its really what we are all trying to do.
Hello fellow warriors,
Sorry not to reply to everyone individually - shattered all the time.
I've only had Tax, and C, so maybe I can help on the SEs. I've had 3 now, so half way through.
In terms of immediate SE's the first cyycle was definitely the worst.
The only anti sickness med was Ondansetron given by IV immediately before the chemo infusion, together with an antihistamine and steroid.
I had nothing to take home, so post cycle 1 was hard due to nausea.
I expected joint pain, so started taking paracetamol beforehand.
Loss of appetite and nasty taste in mouth.
The very worst though is the awful fatigue - so bad for a few days that it was an effort to tun over in bed.
Cycle 2 the oncologist gave me Emend intravenously and I had NO nausea at all.
Still had the joint pain, night sweats, skin rashes, and the awful fatigue.
However this cycle was when the abcess appeared as my white cell count had gone down to almost nothing.
Cycle 3 has been much better. No nausea, some joint pain, but STILL the constant fatigue.
I'm always up early, around 6am, and by midday I'm done in and have to sleep/rest for the rest of the day.
However, I am doing more in general - walking my 8 dogs first thing in the morning, which I haven't done for months, and little things around the house - but I do have a cleaner who comes in for 2 hours twice a week to give it a better clean.
I guess what I'm saying overall is that Tax is VERY doable - not pleasant but nowhere near as bad as I feared.
I think my SEs seem to be much less than you ladies on FEC-T, so don't worry.
We can ALL do this.
Lots of love and prayers for anyone with SEs this week, and for those starting a different regime.
I am FEC-T, FEC number 3 next wednesday. My eyes are streaming and got the same tap for a nose!
Have probs with eyes and had appointment with the eye man on Friday, he suggested artificial tears without preservatives, then you can use them as often as necessary and also the Eye Bag Company who produce masks that when heated and applied disolve the greasy film in the eyes. Have yet to order one, has anyone else used one??
All the ladies who are going onto the T part next week, I was told about the use of Claritin to ease the bone pain. Sounds crazy as its an antihistimine used to alleviate hay fever. But there is some evidence that it works. I googled "Claritin & chemo" and a whole load of stuff came up. Has anyone heard or tried it?
Great to see Mooney and Ali back on the forum and that you are both holding up.
Good luck to all next week, especially those doing docetaxol for the first time, will be hoping its not as bad as we all fear it to be.
Hi Lighthouse, thanks for your help. I rang and asked the question and my 6 cycles are all FEC and no T. Feeling OK generally with the FEC and was worried a change in the chemo will make me feel rubbish. Surprised at how tired I feel halfway through.- 3 down, 3 to go.
I have lots of sleep and rest but it makes no difference. Its a real strange feeling - as if my whole body is tired. Have you been tired too? Also very sore watery eyes and my nose runs like a tap - how attractive!!
Love from Lou xx
So lovely to be back and following how you all are getting on. Sorry for the long silence. It's been a mix of things, mostly just time. I've had my 3rd EC, one more to go next week and then on to T plus Herceptin and Perjeta. I've been fine again this round. Spent a lot of time in Manchester, our house sale went through at last. There's a huge amount to do, we've already made 12 trips to the dump. The seller left all the old furniture in, and it was an HMO, so 5 beds!
Apart from that, I've been able to see our grandson in between and to get a bit of work done. I'm very lucky.
Ok, so most of you are going onto T before me. You're the scouting party! I'll make sure I check in, and wish everyone huge luck. Take care, hope you're all doing something nice this weekend.
Ive been given a double dose of Dex steroids for the day before T1, although I really don't want to take them. I am hoping to discuss this with the team before the next chemo. The steroids scare me!
I was told that the T is more likely to cause reactions than FEC, so to protect us we get steroids the day before, the day of infusion and the day after. That was for the docetaxol on a 3 week cycle. It might be different for those on weekly Taxol. However, a heads up.......if you are given the steroids make sure to take them - I saw one patient turned away in my unit because they would not risk doing the infusion without steroid cover.
Have a good weekend all (I'm enjoying the 2 days off from daily rads!) 😃
Robin, thanks very much for that. Next Thursday will be cycle 4 (fingers crossed) !
My chemo hs only ever been called FEC but now I know to ask next week. Is it given the same as FEC chemo?
Look forward to hearing how next week goes.
Thanks again - love Lou x
Hello Lou. T is the second part of the treatment if you are on six cycles of FEC-T which a lot of us are. You have three lots of FEC and then three of T. T stands for docetaxol, also known as Taxotere. Hope that helps! My first dose of T is due next week. R x
Hi Sue, really sorry to sound dumb but what is T? I can see lots of threads about it.
I am half way through FEC treatment and after that I will have radiotherapy and herceptin injections. Wondering if there is something else to deal with which I have not been told about!
Many thanks xx
From the October thread, a few tips about the T cycles. Like you all, I was very apprehensive about the T. However, it wasn't too bad but is very different from the FEC.
The good bits are that it does not affect he veins like FEC, there is no nausea and less GI disturbance, plus if having T alone, the visits are much shorter.
Personally, the T made me much more tired than the FEC but I looked better, so friends and family didn't always realise how fatigued I felt. It was also the first time I'd had G-CSF injections, as my hospital doesn't use them routinely for FEC cycles. I had a lot of bone pain in the first cycle from the 5 injections and complained to the chemo team. They reduced the number to 3 for the next cycles and that conquered the pain and my leukocyte so were still OK.
So, a few tips....my pharmacist suggested taking one paracetamol and One co-codamol to control the bone pain. That way you get a full dose of paracetamol but only half the dose of codeine, which means less constipation.
Feet need a lot if moisturising because the skin peels off and heels can split if not cared for. I managed to avoid a split by moisturising twice daily but lots of skin peeled off (a but like sunburn). A couple off good creams were CCS cream and Norwegian heel balm.
I also had mouth ulcers for the first time on T. So mouth hygiene is critical. I could not have Difflam due to an allergy and my chemo nurse gave me Gelclair but suggested applying it directly to the ulcer which seemed to work like a dream.
The good news was that my hair started growing back on T. Conversely, eyebrows and eyelashes immediately fell out!
Towards the end of each cycle my eyes ran permanently and so much that it made the skin around them sore, so having some eye drops to hand would be good.
The worst part for me was definitely the fatigue. These cycles were when I realised why they say that fatigue is cumulative. By cycle 6 I really couldn't be bothered with anything and on that last cycle it lasted until about 40 days after the infusion, so be gentle and very patient with yourselves. I'm afraid more episodes of Homes under the Hammer and Escape to the Country may be inevitable!!
I do have peripheral neuropathy in fingers and toes - the feet are the worst and are still bad 6 weeks after finishing cycle 6. My fingernails are discoloured and lifting a little from the nail beds but I haven't lost any yet....
All in all, the T cycles were nothing like as bad as I feared, so I hope it will be the same for you.
Good Luck 🍀💕