Chemo JAN 2017

[EggG]

Oh no Mooney I hope you managed to get some sleep in the end. It's the horrible steroids. Did u ask onc for something for heartburn? I got losec this time round which helped.
Ebim hope you are feeling ok after round 2.
Good luck to all having theirs this week.
Egg

[Mooney]

Well chemo buddies and all. Slowski did you say crash and burn? Well in right state today. Feel very nauseous acid reflux heartburn, weak, only up for two hours today.Sigh! Definitely not Cancer queen Ali.! And here I am again awake when I should be asleep. lolx

[Esther c]

Hi I'm having FEC3 tomorrow and hoping that the nausea I've had since fec 2 will be better following my onc appointment today. I've struggled with feeling nauseous for most of the last three weeks.
I'm booked in on the looking good course on 23 feb and hoping for some advice on eyebrows as mine are starting to thin!
Ebim have you continued with yoga?

[Slowski]

Blue2, Thanks for the heads-up re T.I have managed to get out every day since chemo started with FEC but it sounds like that might have to change with T!

[Blue2]

Ali, re the LGFB workshop, you could always try going on one in Manchester when you are up there! I went on a Manchester one, even though i dont live there and am having treatment in another health authority and only waited a month.

[ebim]

Hi all, Round 2 is in the body and it all went well except I got into big trouble as I had completely forgotten to take the anti nausea pill, they gave it to me then and I had to wait a little while whilst it took some sort of effect. OH was with me which means I shall now have to write everything down which is what he told me in the first place. So I have nowhere to run too!!  hoping that this session is as good as the last. 

I didnt have a choice I was given a date to go to the hospital to have a PICC line put in, I was a little relieved about this as have had some very bad experiences with some painful searches for my veins and extremely painful cannulas.  The procedure wasn't at all painful, had to have an X-ray after to make sure it was in the right place.  Had a couple of runs to the hospital as mine bled on two occasions which apparently can happen until it settles down. Now that it has settled, I am aware of it but for me it's so much better than the hassle of cannulas.  I would recommend it.    

I really think I am very lucky with my hospital as they told me prior to surgery - "If you need it - you get it". "No post code lotteries here". 

Also was lucky with the LGFB pampering day as they gave me a date 24th Feb, by which time I shall be in a wig with no eyebrows I am sure......just a tad worried as I will be on day 9 of this session and low on immunity. 😡

gotta go I have got a list to write!  Hugs to all, Ebim x 

[Slowski]

Ali, On the LGFB workshop I got called up for a cancellation last Monday to go last Thursday, and I got the impression this happens a lot, so fingers crossed you might get one sooner. I'm stilled so pleased with the goody bag, especially the Urban Decay stuff.

Well done all those who've done FEC3,  I wish I could do mine this week and get it over and done with.

[ali1961]

Hi, Robin. I'm good thank you. Went well, running on time for once. Only moment was when I went in to book my Look good, feel better workshop and they told me the first space was in July! Not much help to me.

I really think you should look into getting a PICC line. I'm sorry, I can't remember if you're having 6 or 8 rounds, but even for the remaining 3 it would be worthwhile. Phone your BCN and tell her what happened. You might have to push, although Guy's were fine when I (sort of) insisted. 

Hope you feel ok otherwise. And that everyone else is doing well.

Jackie, how's the bottom? 

Love 

Ali x

[RobinJ]

Hope you're all doing ok, Mooney,Ebim and Ali, my chemo buddies this week. I'm home now after third dose of FEC. It didn't go too well this time. My poor swollen arm and tired tiny veins. Took three goes to canulate. And this time the chemo actually hurt going in so they had to stop and put through more saline. Arm's feeling ok now though. I'm trying to drink more fluids this time. Managed a litre so far. Good luck to everyone else getting done this week. R x

[EggG]

Like Ali I am having 4xEC then 4xT/perjeta/herceptin followed by more herceptin and then some sort of hormonal treatment and surgery maybe tamoxifen although onc hasn't gotten that far yet with discussing. Onc said they wanted to throw everything at it as its grade 3 and in nodes. Apparently the herceptin and perjeta are only funded if given with the T. Although if you have bad reaction to T then they can apply for funding for it to be changed to Paclitaxel weekly rather than 3 weekly T.
That's what I've been told anyway! I'm not looking forward to the T bit...

[Blue2]

Slowski, my first T hit me quite hard. I wasn't prepared for it and perhaps naively I thought it wouldnt hit me so hard as I've always been pretty tough and rarely ill. So I fought the effects by doing too much and not listening to my body which I think made it worse. The second round, I had prescription anti-inflammatory medication and pretty much took to my bed/sofa for 4 days and it was a much easier experience all round. I recovered quicker too after round 2, probably feeling fine after 6 days. Those first few days are unpleasant, but after that, in my experience, it's not too bad.

[Slowski]

I've also wondered what's the difference in FEC/EC and T in terms of what it does - I think I read somewhere that T is more about the spread into the lymph nodes and dealing with that. I think my onc is very frank about SEs for T - the words 'not knowing what's hit you' keep ringing in my ears .....eek. But we can all get through this together.

[Scotty66]

Think you will crash and burn today mooney. Get some sleep 😴!!

[ali1961]

Thanks, Beedot. Yup the new house is in Manchester. We rent a place in London and will keep that on (although a smaller house) because I work in London for roughly 6-8 days a month. The house in Manchester needs lots of work, so a lovely distraction from chemo

Al x

[Beedot]

Hi all,

Ebim, I think you and I are similar, I had a lumpectomy and now 3 X FEC then 3 X T. I am ER+ and HER-. I will then have radiotherapy for 15 days and will be on Anastrozole for at least 5 years after.

i had my second FEC on Monday so you are only just behind me.

so far I have felt much better than on round 1, I didn't get the hangover on Monday evening and I wasn't as washed out yesterday as last time. Apart from the night sweats which I assume is the steroids, I feel ok, mind you not up to drinking an Aperol Spritz, that's impressive Mooney!

my hair is speeding up on thinning now, I wore a lacy turban that I made yesterday for the first time, nearly time to get the wig out of its box.

how are you doing Jackie? 

Ali, congratulations on the house, so you will be nearer to gorgeous grandson?

Beedot X 

[Mooney]

Well 6am and have been awake virtually all night with......acid reflux! Probably my fault as had lovely supper last night, plus of course my Aperol Spritz Hey ho!
Mooneyx

[Mooney]

Lol Scotty! 'Twill be a different story later. Double crash. Feel chilled could be the Aperol Spritz I shouldn't have had on chemo noght before dinner! 😜

[Scotty66]

Are you sure they didn't give you anything else in your line??!! You sound very relaxed mooney!! Dreading the unknown of the t and how long it's going to take 😟

[ali1961]

So ebim, Herceptin and Perjeta are targeted treatments for cancers that are HER+.

Well done Mooney, you're the cancer queen. Despite the typos!

Night all

Ali x

[Mooney]

I give up - too late! Doh! 💤

[Mooney]

In and out in record time, Doherty!

[Mooney]

Well ladies 3rd FEC done and dusted. In and not in record time- my was that nurse on a mission.But apparently if you have a port or PICC line it is quicker. I also feel surprisingly well. Usually I crash out after chemo but not today. A lovely neigh our invited us for supper and I wasn't sure how i'd feel , but felt fine. Mmm mmm waiting for the crash!
It was suggested I had chemo first to remove the lymph nodes as quite big and in difficult place and surgeon wanted to reduce. But oncologist said surgery first (!) as he would have to give 8 cycles before surgery but only 6 after, also he thought and had 2nd surgical opinions it was feasible to do surgery first. As you say all different.
Good luck tomorrow Robin, Ebim and Ali Take heart from my good experience. Know where I am with FEC. T is an unknown quantity but easier on the veins Robin! How they doing?
Love and courage - we are doing it Yeah 🤗😙
Mooney

[Wtp2016]

Happy Valentines! ❤️
I'm having chemo first, 4 x EC then 12 x weekly doses of T (equivalent to 4x the 3 weekly one).
Perhaps EC is 4x and FEC is 3x?
Mine was also acting very assertive like Ali's - they think I have some grade 3 cells due to the speed of growth and lymph nodes and size of tumour.
Round 3 was def harder for me but they increased my dosage which might be why. So we have different drugs, different number of rounds and could be getting different dosages! So many variants and I have no idea about any of it...
I'm going through write a list of questions too - great idea!

Does anyone know what the difference is between EC and T regarding how they affect the cancer cells? All I seem to find online is about the SE.
Thanks all xxx

[ebim]

Listening to you gals there is so much I don't know!  And so much is the same....the fears, the questions, the worries etc etc etc, don't you just hate them.  I had a lumpectomy in November and now on FEC-T 3 & 3 sessions.  But I haven't been told anything about herceptin or the perjecta.  But two  things I have come to realise is that we are all in the same boat called confusion and that I have come to rely on this forum....thank you ladies you give so much support under such difficult circumstances.   Sleep tight, hugs ebim xx

[Scotty66]

Sorry Blue! Really seems to vary according to where you are in the country and your exact type of BC. I think mine and Ali's sound really similar but our chemo regimes are different so who knows!

[Blue2]

Thanks Scotty, that blows that theory! I seem to have compiled quite a list of questions for my oncologist next week! I was in such a daze at my first appointment, caught up in the whirlwind of investigations and diagnosis, and next week will be the first time I've been back for review.

[Scotty66]

I'm chemo first. 3x FEC and 3 x T with hetceptin and perjeta

[Blue2]

I'm with you Ali, 4 each of T and EC, so i will be one of the last ones to finish with you! I am having the T first, before the EC. Do you think everyone who has chemo first has 8 sessions rather than 6? My cancer is in the lymph nodes but is grade 2, so not as assertive as yours! Is anyone having chemo first and just having 6 sessions.....? I'm compiling a list of questions to ask my oncologist next week!!!!

[ali1961]

Hi, Ebim. I'm actually on EC rather than FEC (different approaches in some areas). But I have to have 4 EC then 4 Docetaxel. So you will overtake me before I'm finished. I think it's 4 + 4 because mine was described as very aggressive by my surgeon and oncologist 😒 Then they told me off for using the same word! So now I say I have an assertive cancer!

[RobinJ]

Don't worry Ebim. You will get there. Yes I'm having third dose of FEC tomorrow. To be followed by three doses of T, the doxy whatsit one. Thinking of all my chemo buddies tomorrow. Let's hope our veins are cooperative. I always feel so nervous the night before. R x

[ebim]

Hi Ali, Mooney, Slowski & Suze have to say I am a little envious of you all being on FEC 3 as I am just coming up to FEC 2 .....are you all going on to have 3 on Docetaxel - sorry if I have spelt that wrong -  which is my programme 3 of FEC & 3 of the one I have probably mispelt.  Hugs Ebim x

[Suze123]

Good luck to everyone on FEC3 this week as well. I'm next week like Slowski.

Halfway point will be a big milestone for us, We can do this!!! 

[RobinJ]

Good luck, Mooney, for today.  Great Valentines Day you're having.  I'm being done tomorrow, along with Ebim and Ali, so good luck to you two too.  We can do this!  Sorry to hear about the boil on the bum issues and the bleeding thumb - sound painful.  Have a good day everyone.  R x

[Slowski]

Good luck all on FEC 3 this week - half way mark for some, yay! Mine's due next week, will be awaitng your feedback......

[ali1961]

Yup, good luck Mooney. 

Ali xx

[Scotty66]

Good luck with number 3 Mooney. Happy Valentine's Day!! I'll be joining you with number 3 on Friday. Marks the halfway point for stage 1 for me. We're getting there!

[ali1961]

Ouch, Jackie. One of my sons had a pilonidal abscess when he was a teenager. In the cleft of the buttocks. It was horribly painful and I really feel for you. Glad they were on the case there though.

Suze, sorry to laugh, but that was a great story.

Yup, I've got chemo 3 on Wednesday. I've fasted before the other two and have been very lucky with ses. I am doing 48 hours on water, tea, coffee and miso soup. Then I won't eat on the actual day, but will have breakfast on Thursday. But I do fast regularly so the actual process is fine for me. My onc was a bit sniffy, but I'm happy to do it anyway. But despite that, I haven't lost any weight. Still, I guess I might have put it on otherwise.

Our new house went through today, delayed from Friday. So I'm hoping to be uber well this time, as we have a huge amount of work to do. Have ordered industrial quantities of disinfectant, rubber gloves, dust masks etc.

Ali x

[Blue2]

Thank you Slowski and Beedot, you've reassured me somewhat. I will ask my oncologist too next week re the take on cold caps and metastasis in our NHS trust.
The fasting sounds interesting - anything to reduce the side effects, with the bonus of if not losing weight, maintaining it! I have gained a few pounds on chemo already, probably due to inactivity, so fasting sounds like a win win if you can do it!!

[Beedot]

Hi all,

Back from FEC2 today, feeling not too bad currently. I had a snooze once I started the jet lag type nodding off earlier and I am waiting for the hangover later on but OK for now.

Blue2 - re the cold cap mets. risk, there was a Dutch study in 2011 that analysed the data from 60 other studies on scalp cooling and my reading of their conclusion was that it was a theoretical risk but there was no evidence in those studies of it increasing the occurrence in people with solid tumours (Breed, van den Hurk,Peerbooms) - sorry, I am a bit of an anorak once I start researching. However, once I found that study  I was happy and gave up looking for anything that might contradict it! I gave up on the cold cap today though because my hair is really falling out so I made my mind up on the way to the hospital and when the team saw how much was coming out that said they thought it was the right decision, so pixie cut coming later this week etc etc.

Re. the fasting, I told my Oncologist that I had done it before both sessions and said no doubt she would tell me off but she said fine, if it works for me and I'm eating healthy stuff and not relying on say one Mars bar a day, carry on and report back as she was interested in hearing experiences of it.  There is a separate thread on the forum about it. The research has only been on mice so far by Professor Valter Longo (who is keen to stress don't try this at home without medical supervision) but a small study on humans concluded that at least fasting didn't seem to be detrimental to people having chemo. However, I found a few anecdotal reports from people who had done it on some sessions and not others and said that it seemed to reduce the SEs. My method is the Fast Diet (5:2) because I have done it before, I think others do a total fast.  I know my combination of carbs, protein etc isn't the Longo research proportions but I feel comfortable with the routine, just extended to 2 consecutive days and then today by default because I don't each much anyway on treatment day. As I said yesterday, it's probably doing nothing at all but I feel I am doing something helpful and although I drop a couple of  pounds in weight it soon goes back on over the 3 weeks so my weight has stayed about the same. 

I will go and hang up my anorak now.

I am going to book myself on a LGFG workshop, it sounds really enjoyable.

Beedot x

[ebim]

Hi Ladies, 

I have chemo 2 Wednesday so join Mooney in wishing all good luck for this week .  Fingers crossed for bloods being right for all of us, and fully agree with SE's being kind to everyone.

The antics of us all should be turned into a t.v. sitcom and Jackie & Suze episode could be entitled "Thumbs and Bums".  Seriously though, hope you both are better soon.  

Somewhere on this thread Day 20 was mentioned as hair falling out day, I am on it today and the bath looked like a disaster area when I got out this morning.  I am late (very late) sixties and its bad enough to have sagging chins & wrinkles without losing my hair too.  Also a bit of a klutz so headscarves are a bit of a no no as I wouldnt have the confidence that they wouldnt unwind in the middle of shopping in ASDA.

Take care, Big Hugs, Ebimx

[Mooney]

I have chemo 3 tomorrow so good luck everyone who is having chemo this week. Think Slowski Robin and Ali are. May your SE's be insignificant!
I agree with all you said about the LGFB workshop.Not just the goody bag but the whole experience was very uplifting. I really recommend it.
Sorry for you Jackie - not a nice experience. Hope it improves with antibiotics.
I am just not a 'embracing the whole bald thing' sort of person, I am the hat or wig at all times person, though the wig drives me mad tbh it is so itchy! Especially around the hairline. Can't wait to whip it off!
Love and Hugs everyone
Mooneyxx

[Slowski]

Blue2, I spoke to my team about cold cap and risk of skull mets. They were dismissive of the risk and said they would not in all conscience advocate it if there was a risk, and that they would not be allowed to in such litigious times because if such a risk existed someone would sue them. I think other teams may have a different stance.

Slowski

[Jackie1952]

Hi EggG
Have a look here.
They helped me immensely after my MX.
https://www.breastcancercare.org.uk/information-support/publication/exercises-after-breast-cancer-su...

[EggG]

Thanks Truey. I haven't had surgery yet so don't know the exercises. Are they online somewhere?
Egg

[Truey]

Hi,

Just popping in from the October thread. Yes, the sore and tight feeling in your arm is the effect of the EC/FEC on your veins. I did all my chemo via cannula and in the same arm (due to mastectomy and ANC). It does feel uncomfortable but this wears off eventually because the T cycles are kinder on the veins. However, it did get more tricky to cannulate as some veins in my hand became uncooperative! My arm is better now but the veins are still hard and blood tests from that arm will always be a challenge I think. I gave been told that the veins may take months or years yo totally recover. Certainly over 1 month after my last cycle of chemo, I can still see a swollen vein in my hand.

if you have already had surgery, the exercises we are prescribed for that help with the sore veins by easing the the tight feeling, so keep on keeping on with those. 

Hope the rest of your chemo cycles go well.

Hugs, 

Sue O

[Blue2]

I am back from my Look Good Feel Great workshop and just wanted to report that it was fabulous!
Sitting amongst others going through similar experiences felt really comforting - like I was normal again (!!) - and the volunteers were lovely, so kind and helpful. It was really good trying out products that I wouldn't normally buy, for example a chanel lipstick and the clinique moisturiser, which felt lovely on my parched skin. And yes, the goody bag is incredible, but the overall experience is worth so much more. Everyone had the same bag, so no comparing and no swaps!! I completely recommend it! I know you are in Spain Jackie, and one of the volunteers said they run the workshops in other countries, so it might be worthwhile looking into it to see if there's one near you? I felt really good when I left and my husband thought I looked like the me of a couple of months ago again!
Beedot, when you've recovered enough from your treatment today, i'd be really interested to hear about your fasting before chemo.
The latest thing occupying my thoughts is the cold cap! Nobody, including my BC nurse or oncologist has mentioned the possibility of scalp metastasis when using the cold cap, however it's something I read about on Google (argh!) last night and am worrying. Just wondering, was anybody else informed of the risk or is it the internet mis-informing? I will speak to the oncologist next week too.

[EggG]

Jackie you poor thing. It sounds like the antibiotics are working though so fingers crossed book will settle! As you all say it's other things that they don't tell you about the chemo which get us!
I wanted to ask if anyone else has had a sore arm after EC/FEC? I'm now day 8 post EC2 and the arm where I was cannulated is really sore. Not swollen or red or hot, just feels tight especially if I stretch it out? I had both chemos into same arm so wondering if it's he veins hardening up from the drugs. Went for a long walk today in the cold sunshine which was really nice but now quite tired. Am normally very active and it's hard to gauge how much is tiredness vs a bit of laziness 😜. I think gcsf might make me tired too - 2 more days to go!!
Ali I love the sweary head. Am so tempted to try it for parents evening under the wig and then whip it off whenever I disagree with a teacher 😂
Hope you are all having a lovely weekend

[Jackie1952]

OUCH Suze. That sounds really painful.
Glad it's feeling a bit better.
You could start a decorating blood spatter trend.
We should all keep notes of the stupid things we've done.
We will laugh at them in years to come.

[Suze123]

Aw Jackie... sending you a massive (gentle) hug. It sometimes feels that the little extras we have to deal with on top of all the other crap can push us over the edge. But, we are not going to let it!

To make you feel better.....

i was a right prat this weekend as I managed to partially rip off my thumbnail whilst locking the patio door! Am a total clutz at the best of times but I think they are a bit sensitive due to the chemo.  Really hurt, bled everywhere and caused me to feel really dizzy and then to vomit in shock. However, my poor hubby hadn't quite got the bucket ready in time... not my finest hour! I also realised later that as I had run around after it happened, doing the very mature "ow, ow, f%^*!" hysterical thing, I had managed to splatter blood up the wall, on the door and even the ceiling. Looked like a crime scene!

It's fine now. So, this one is going down as one of those things I will look back on and cringe/laugh. Knowing me, there will be lots more!

[Slowski]

I lucked out on the LGFB workshop and even though I'm mid 50s I got Bare Minerals and Urban Decay along with quite a lot of No 7 and some Clinique, Lancome and L'Oreal. I didn't see any lavender water! We did a bit of swapping between us too. Def recommend to anyone, even though I had to travel about 35 miles, as I wanted to check out the journey as the hospital is a possible location for rads for me (Addenbrookes).