October 2019 chemo starters

[Shi]

Ruby blue 👭sorry to hear you’ve been 🤮 they will tweak your meds till they get right combination so you did right thing not trying to battle through and getting yourself in 👍always do that. Also some ladies used travel sickness bands which helped so maybe you can try them? My meds were akynzeo and metroclopromide and I had no sickness or loss of taste during chemo, so maybe worth a mention to see if they could try you on that combination? I know different things work of each of us, but just wanted you to know about this combination. 💕💕✨✨shi xx

[Rubyblue2]

Evening. Just a quick update from me- had first FEC yesterday (can't believe only yesterday) and unfortunately not plain sailing for me. 2 hours after the end of chemo I was really sick and faint and then so so sick all afternoon / evening (I'd had all the sickness meds including emend and it didn't touch the sides). Also numbness in both arms and a bit in legs so ended up in a&e as the chemo assessment unit was full- so from 10 last night until about 5 today been in hospital having cyclizine (amazing by the way) and a drip as my sodium was low. In a way I'm not surprised as I was told if you have bad morning sickness you're more likely to be affected by the sickness and I always respond to any meds with side effects! I'm back home though, in my own bed after hours on a  trolley and touch wood at the moment I'm feeling ok. I can still call the district nurses out as well to give metroclopromide as well xx

[KathCurtis]

So sorry to hear how FEC is affecting people, and a little anxious as I will move on to that in January. 
I wonder if you have all found Dr Liz O’Riordon on twitter - breast surgeon who had triple negative breast cancer and a recurrence. She and a GP who also had bc (Trisha Grrenhalgh) have published a very practical, non scary, helpful book “The Complete Guide to Breast Cancer”. Very good. One of the things they recommend for when undergoing chemo is to drink two litres of water a day and to drag yourself out for a walk every day. Hearing your experiences it sounds like every day maybe way too ambitious! Still i think the book is helpful.

i am trying to live in a positive emotional space atm. Wishing times of warmth and hope for everyone today.

love 
Kath

x

[Purpletrunks]

Hey Leaw,

I'm 5 days post second FEC. My first was quite similar to yours ... sickness built from the off and was then very sick night 1, also sick night 2, then nausea for at least 5 days. Couldn't eat much at all, losing weight. I had breathing problems so also ended up in a&e early on... was fully tested for pulmonary embolism but thankfully not. white blood cells up, so given antibiotics. Then the following week I had two trips to the chemo helpline at hospital with uti symptoms and throat symptoms. Severly neutrapenic, more antibiotics. Everything such a drama. Rashes, constipation/ diarra and the list goes on. For the first week I struggled to move, couldn't lift my phone some days. By about day 10 I think I managed to a 10 min walk and got stronger from there but not back to normal. I managed about 30 mins kickboxing by the end of 20 days. My onc is contemplating reducing the dose because I have been hit so hard, but the good news is that he can feel the tumour has softened. 

This time I stuck with same dose, but better antisickness. I also drank alot more water, and I ploughed into liquid iron and some meat as I was borderline on my iron. I havent been sick and been able to move about the house, noticeably brighter than last time. Ive started losing weight again but can at least eat a little. I have had breathing problems again, but because I know it's a reaction to the FEC, rather than a complication it's not so scary!! I have managed to sit up at the table for about 40 mins today (🎉🎉🎉) so it's certainly not a breeze. But definitely keep a diary,  tell your onc everything, and 'make a fuss' because they can help. 

😘😘

[smclaire]

Ah Kath it sounds like you’ve had a terrible time so far , I’m 11 days post 1st EC and feeling pretty much back to normal now. I would write a diary of all your symptoms and take it to you’re appointment before the next chemo so they can tweak any meds you may need. A lady I met had similar problems and her diary led them to realise she was allergic to one of the anti sickness meds and she was fine for the rest of her cycles . 
Take each day as it comes and try to eat something, I made some homemade soup before I started so knew I was getting some goodness each day, I also drank loads and loads of water which others have said helps with side effects and I must say I’ve been very lucky so far , apart from a muzzy head I’ve been fine . 
Be kind to yourself, and take care xx

[leaw]

First fec on friday gone, chemo nurses were lovely and it went without a hitch, got home at lunchtime, from 4pm felt really sick and was sick several times and temperature playing up so off to A&E. white blood cells in blood were raised so put onto antibiotics and given new anti sickness jab, which worked 🙌🏻🙌🏻👏👏. Saturday was just really tired little sickness feeling, but felt wiped out washing a sink of dishes. Had a bath and spent most of the day in bed. This morning feeling ok, hardly managed any food from friday, just smoothies/yoghurts  & half a slice of toast. Going to try and go to watch my son athletics training at lunch, just sitting and getting some fresh air. Saying that my stomach may have other ideas as I have a lot of rumbling going on and diarrhoea 🙈🙈 sorry TMI. Was everyone else similar after there first dec session? Hope you are all getting there. Thinking of you kath x

[Shi]

👍 there is a good tutorial on YouTube a lady with alopecia gives great tutorials about using powder and small angled brush to create brows and how to do the eyeliner so it looks like illusion of lashes, might help as alternative if you need it. Have you got your look good feel better sessions booked with your Macmillan centres? Great tips and tricks on there 😘💕💕✨✨shi xx

[Emzlew]

Thanks Shi. 

I have messaged my breast cancer team and I'm waiting for a response 😘 

x

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@Shi wrote:

Please check with your teams about microblading during chemo, not worth risking infection ❤️Please keep safe 😘💕💕✨✨shi xx

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[Shi]

Please check with your teams about microblading during chemo, not worth risking infection ❤️Please keep safe 😘💕💕✨✨shi xx

[Purpletrunks]

I was told I kissed the boat with microblading because of risk infection... so do look into it carefully 😘😘😘

[KathCurtis]

Thank you for everyone’s kind thoughts. 
Emzlew - you are absolutely right to adopt a fierce attitude about hair-loss. We need to look after us, not worry about the impact of how we look on strangers! Go you!

And I sympathise with lack of sleep Claire. Waking up in the night is a lonely experience. I am using podcasts as distraction. I have found a very dull sci fi series works wonders for me. Anyone got recommendations for when I finish it?

kath

x

[ClaireL]

Hey everyone!

I'm in the midst of no sleep and shedding like a Labrador so I won't hang about today.

I had microblading done a few weeks back just before I started treatment. you can absolutely go ahead and do it now. It just might take a little bit longer to heal than usual. Mine are fine with no issues. I went to people that specialise in hair loss because of this **bleep**ty situation. 

Thank you everyone for picking me up in the past day or so. I know I have literally nothing to moan about given what some people are going through but I know you guys get it. 

Im thinking of you all, keep talking and I'm keeping everything crossed for you guys still waiting for biopsies and results. 

Xxx

[Emzlew]

Hello again..

Can you have microblading once you've started chemo or have I missed the boat for that one?? x

[Emzlew]

Hello lovely ladies ❤️

Had my second round of FEC yesterday, happy to report no sickness this time for me either...so far. 💪

Rubyblue..  Once you get started you will feel better.  The whole wait and build up is the worst part!  You will feel better knowing you have started the treatment to evict the A****OLE that decided to join you uninvited!! 

You've got this!! 💪🥊 

ClaireL

I felt so much better when I shave my hair.  I spent 2 days fretting about my hair and that I had things to do before I was ready to lose it... The day before I was so scared to have a shower as I knew it needed washing but I didn't want it falling out whilst I was home alone with the children.  I need to wait until my wife was home.. 

I just got fed up with feeling so worried about it.  Sunday I washed it and it matted into a dreadlock instantly.  I could feel it happening as I washed it?  It was so bizarre.  There was nothing to do other than brave the shave! I had all my children with me when I did it and my wife filmed it so I could send it to family and close friends.  At least it's less of a shock for them when they do see me in all my bald glory!!

It felt so liberating to do it!! 

I've been wearing beanies on the school run but I've been braving shops and hospital appointments without any cover.  It's not our fault we are in this position!! If people don't like it then bloody look away!! 

We are warriors 💪❤️🥊🥚👨🏻‍🦲

I've been thinking of you Kath everyday and hoping for a good result.  You cry as much as you need to!! ❤️❤️❤️❤️

xxx❤️xxx

[KathCurtis]

Welcome Rubyblue

getting started with chemo is so daunting but i think we all found it better once we were over that first one and could feel the relief of getting treated!

Sorry to hear of people’s challenges. It is tough, in so many ways.

 I have been so tearful the past few day. Biopsy on lung Tuesday. I just dread the outcome. 

take care all

kath

x

[Purpletrunks]

Hey rubyblue ❤❤

So I'm doing ok. 3 days post 2nd treatment... not been sick this time 🎉🎉🎉, but slightly more wiped out this time. I'm expecting the FEC train to hit tomorrow. My lungs have been affected again, but as I was fully tested last time I'm not so worried this time.

Sorry to hear your hair is getting to you claire xxxxx mines all gone now, but it does feel lovely... like a little velvet mole. That was very insensitive of your friend... so much of other peoples reaction is about them I find! A friend asked me what stage I was, and when I said 3 ( I think?!), she burst into tears and I had to comfort her! 

I think we all know in here that we would rather lose our hair than our lives! I think of it as a stripping back, a paring back of the irrelevant. I just know the stronger me will emerge from the baldness... more connected to my true self. Well, on good days anyway. Other days I think what's the bloody point!!!!

Stay strong lovelies xxxx

[ajatron23]

Hey claire

im in a good week but still get wiped out. Don’t feel down. It’s all just a phase that will be over as quick as it started. Have you made any plans for sans hair? I’m with you. I’m dreading it too but need to embrace it. My husband looks better in my wigs than I do 🙄!!

[ClaireL]

Welcome ruby 🙂

Been having a crappy day because my hair is starting to go. Really been dreading this bit. A so called friend said 'i'd rather die than lose my hair' in a message yesterday which just put me on a downer. 

Also doing the washing wiped me out today. Stupid really. 

Other than that all ok here. How is everyone else doing? 

[ajatron23]

Good luck Ruby. We have got your back and all feel the same xx

how are people getting on with hair loss? I did the cold cap and still seem to be hanging on in there although I’m only day 15. Other areas are departing rapidly 😳 if you know what I mean. 

[Rubyblue2]

Hello ladies, well I wasn't sure if I was going to make it into the October group but I've just snuck in - starting on Monday with first FEC. Nervous is an understatement although pleased to be getting started!

[aj72]

Morning ladies!!!  Hope you're all taking care and staying well ❤

Just following on from posts re: dry skin.  Randomly as an eczema sufferer my chemo has totally cleared my skin 🤷🏼‍♀️ weird although I'm advised that it will likely return following treatment 👎

Any hoo . Back to my post. I know at this particularly unpleasant time we need to pamper ourselves however let's spend our pennies wisely. 

Aqueous Cream - cheap, unscented moisturizer that can also be used in the bath and shower as a cleanser ( just be careful getting out as it can get slippy 😂)  also great for keeping bald heads supple.  Don't forget sunscreen/facial moisturizer with decent SPF tho if going out uncovered !!!!

Available from most supermarkets for £2-3. 

Amanda 👩‍🦲💪❤

https://www.google.com/search?q=aqueous+cream&safe=strict&client=ms-android-ee-uk-revc&prmd=sivn&sxs... 

[KathCurtis]

Thank you very much Lou. I will try that, it sounds exactly what I need. It’s very kind of you. 
kath

x

[Purpletrunks]

Hi Bevrax,

Welcome to the group. I dont know much about Iberance, but good luck with it - do let us know how you go.

Both you and Kath must be finding it hard to know where your brains can go to find peace with all the talk of spreading, new treatments, and changes of plan. 

Have you read Exhart Tolle's The Power of Now? I listened to it on audiable a year ago and it's my favourite book. And that was precancer! You could read it hardback, but the beauty of listening is he reads it himself and has a beautiful meditative voice. If you have never used audiable I can gift you the book for free. It's all about finding peace in the present and how to not dwell in the past or the future.

The Power of Now: A Guide to Spiritual Enlightenment https://g.co/kgs/ciXtAZ

With much love, from steroid-frenzied, sleep-devoid, Lou. 

[KathCurtis]

Hello all

So much going on for everyone. This is a tough ride.

welcome to this lovely supportive group  Bev. Very sorry to hear you have found yourself with bc a second time. have primary aggressive triple negative and now being investigated for lung cancer. Shocked to my core. Had a PET scan yesterday and doctor says balance of probabilities say it’s lung cancer but we need a biopsy. So I have to miss chemo this week to build my white cells and protect against infection from biopsy. I don’t know the chemo you refer to - ibrance? Is that for breast and lung? Let us know how it goes. Very much thinking of you 

Kath

[Bevrax]

Hello everyone,I am starting Ibrance orally tomorrow,I have been on Letrozole for the last month and seem to be ok aside from hot flushes.This is my second time with BC,the first was back in 2002 and I had a lumpectomy,removal of lymph nodes,Radiotherapy and Tamoxifen and was discharged after 5 years.This time I had gone to my GP with pain under my left armpit and shoulder,she sent me for a mammogram & ultrasound.Something was picked up in the same area of the left breast I had 17 yrs ago,they did a biopsy then and there,which came back malignant.The original plan was to have a mastectomy,before that I had to have a C T to see if it had spread.Just got my head round that only to be told it had spread to my lungs,shock was an understatement.

This was in August,I have since had an MRI,Petscan & an EBUS where they took biopsy’s of the lungs,it has been a traumatic couple of months.I don’t understand all the abbreviations used on here but am sure I will be an expert soon!I am terrified of starting 

the Ibrance tomorrow which is why I am writing this to get as much info as I can.

Thankyou for reading my story.

[Shi]

Just do what’s right for you to get through ❤️ Like I’ve said before we all do it our own way, there are no right or wrongs ❤️ When any of you switch to the t a good cream for the dry skin you might get is udderly smooth with extra urea from Amazon ❤️ This was tip passed onto us, so passing it on if anyone starts to struggle with dry skin ❤️ 💕💕✨✨shi xx

[Purpletrunks]

Great point about the does shi. Thanks!

I also have been eating beef this week.. I'm vegan but decided my health came first during this period. So beef chicken and fish are in for chemo period only. My iron is low, and I'm on omeprazole for digestion problems which lowers b12. So beef it is, dont even enjoy it! 

[Shi]

Purple trunks ❤️ Just remember your lower dose could be someone else’s full dose, it’s all tailored specifically to you. I had my dose reduced after 1st one put me in casa nhs, so after 💩myself, I was scraped off the ceiling and took the lower dose ❤️ Thought getting some in was at least getting some in 👍 I went on life Mel honey and a steak a day too after 🤣😂🤣😂 and kept out of casa nhs for remainder of chemo 👍 💪💪💪 you are all doing amazing ❤️👭❤️💕💕✨✨shi xx

[Purpletrunks]

My second FEC went ahead today. My onc is concerned at how strongly I have reacted to chemo, particularly my neutrafils levels. They are upping my antisickness and bone marrow growth injections, but if I respond as sensitively this time they will have to lower the chemo dose because they have to balance my health and actually get me through it. Really dont want a lower dose! 

The excellent news is that he felt the beastie and thought it was the same size but less dense. I also think it feels spongier! Which means it's working 🎉😭😊. Feels like the first good news since dx (just like you leaw) so I'm taking it and nailing it to the forefront of my mind.

Knocked for 6 this evening, worse than last time but hopefully the sickness wont kick in like last time.

Went for my look good feel good this avo.. was a lovely thing to do. Definitely book in if you havent yet  ❤❤

[Purpletrunks]

Great to hear your positive Leaw ❤❤

[leaw]

Yes it is a relief, feels like the first bit of good news in the last 6 weeks. I’ll keep in touch with how the picc line goes tomorrow.

hope-everyone else is doing well today 💪🏻

[aj72]

Leaw 

Good luck for tomorrow and Friday.  Let us know how you get on.

Amanda 👩‍🦲❤

[jasmine1897]

Leaw, must be a relief about the MRI results and that lymph nodes are clear. You can now focus on starting treatment 🥊 🥊! Good luck for Friday x

[aj72]

http://news.sky.com/story/womans-life-changing-tourist-visit-as-thermal-camera-picks-up-cancer-11842...

[Shi]

Deana please mention to your team before chemo about nose etc, let them make the call they are the experts ❤️💕💕✨✨shi xx

[leaw]

That’s great Claire, glad your side effects are a bit more settled this time.

my nurse called earlier with my mri results, no additional concerns from the mri, just the one lump we knew about, which has now grown a few more millimetres (which I knew as I could feel it was a little bigger) it’s now just over 2cm. So pleased it hasn’t spread and lymph nodes are ok! Picc line on Thursday then chemo session 1 on Friday x

[ClaireL]

My round 2 yesterday went better too. No nausea or sickness like last time and just tired today. 

Fingers crossed we are all settling in and getting the better of this. I'm even contemplating going in to work on my week off of treatment to keep some normality. Just a few hours a day maybe. 

Starting to shed body hair now though so a tough few days coming up for me. I hope the boy isn't too scared of bald mummy 😞 

Night all x

[Deana]

Had problems with the account and have re registered. A bit concerned as I’m got a blocked nose and sound like I’m full of a cold but feel absolutely fine and no temperature, hopefully won’t get turned away. Just want to get going so fingers crossed x

Deana

[aj72]

So Round 2 of FEC yesterday. Steroid insomnia last night but otherwise so far so good just a bit queasy but taking extra anti sickness meds which are helping. Waiting now for steroid munchies to kick in 🤦🏼‍♀️

Hope everyone is doing ok.

Amanda ❤

[Shi]

Kath ❤️❤️ We’ve got hold of you 👭👭👭 this Oct thread is 🥊🥊🥊💪💪🥊🥊💕💕💕 everyone is pulling here kath, you keep hold tight too ❤️ Please let us know when you get chance ❤️❤️We all care 😘💕💕✨✨shi xx

[ClaireL]

Welcome Redfos and hope tomorrow goes well. The anxious wait is the worst but once number one is over it's just getting the best out of your day. 

Always here with an ear x

[aj72]

Thinking of you Kath. Sending a virtual hug 🤗

Amanda 👩‍🦲

[Emzlew]

Thinking of you Kath xx❤️xx

[Purpletrunks]

Kath,

Just a thought but when I was being tested for Mets, the nurse told me they have a very low threshold for brain scan. I.e. they dont have to think it's in the brain to scan, they just do so at the slightest change. Im sure it will be the same with lung. Hopefully that might give u a whisper of comfort. Thinking of you, we all have you held really tightly while you wait 😘😘😘😘😘😘😘😘

[Purpletrunks]

Hi Redfos,

You are very welcome here xxxx I'm dashing to onc appt but wanted to say hi

❤❤❤

[Cherryp]

Everything crossed for you Kath. You must be feeling very concerned but hopefully it’s nothing they can’t help you beat. 

[KathCurtis]

Thank you for your kindness 

kath

x

[ClaireL]

Good luck Kath, we will be thinking of you x

[redfos]

Hello everyone, 

I’m due to start my chemotherapy tomorrow and have been told by a friend how important this forum was in getting them through their treatment a couple of years ago.

I found my lump in August and didn’t anticipate it being anything other than a cyst- as did my GP so was knocked sideways when it became apparent that this wasn’t the case.

Had my lumpectomy 6 weeks ago and am due to have 12 weekly sessions  of chemotherapy followed by a further three cycles of a different drug on a three weekly basis, radiotherapy will follow. Not looking forward to tomorrow but just want to get started now as this seems to have been going on forever.

I’m married to a wonderful man who has been amazing, I don’t know where I’d have been without him and have two boys, 20 & 23 who have continued to make me laugh over the last few, at times rough, weeks.

Went back to work for three weeks after the lumpectomy as it wasn’t doing me any good being at home on my own and finished again yesterday so have a list of things I need to do/ buy today in preparation for tomorrow. Keeping busy will hopefully keep my mind off what’s to come which, fingers crossed, won’t be as bad as anticipated.

xx

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@Mai7 wrote:

Hi

👋 

This thread is for anyone due to start chemotherapy in October 2019.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Best wishes xx

---

[redfos]

This thread is for anyone due to start chemotherapy in October 2019.  I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment.  If you have any questions please post away on here and others in the community will watch over you whilst you are getting started.  Once you are into it you'll be pretty good at helping each other.  You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.

Here is the BCC guide on chemo:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I finished my chemo over a year ago and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum: http://lifeafterlola.com/

Best wishes xx

[Purpletrunks]

Oh Kath, you must be very scared. Much love ❤❤❤❤❤❤❤❤❤❤❤