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December 2020 Chemo Starters

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

Karden ❤️ Hope they’ve been able to give you alternative meds for uti 🤞🤞 higgi yep steroids and aunt sally cheeks can be common, always check your temp to be safe. Remember with uti you don’t always get temp, just burning wee, so please keep safe ❤️ Keep running up the mountain ❤️❤️❤️ You are all doing amazing even if you don’t think you are, you are ❤️❤️❤️💕💕Shi xx

higgi
Member

Re: December 2020 Chemo Starters

Hi @Karden @so sorry u ad go A&E ! Hope it all settles ! And you can enjoy Christmas Day 
the headache passed but like last time face is bright red but now I know it’s flushing from steroids !  No panic 😂

Uti must b horrible , I was worried about this as troubled in past and have had kidney stones so I try drink 1/2 cranberry juice n 1/2 water in a 700 ml drinks bottle. I was still told drink more !!!! Bloody hard work !
it’s hard looking in mirror when we look so different with our shaved heads but it’s the Red Devil remember(epirucibin)  she’s on our side destroying the cancer cells . 
MERRY CHRISTMAS EVERYBODY! Hope u have a super day relax enjoy whatever shape it takes xxxxx 

Karden
Member

Re: December 2020 Chemo Starters

Hi @higgi I hope you're still feeling ok and no more headaches.

I ended up in A&E at 5am Christmas Eve, covered in a red itchy rash from head to toe. They suspect an allergic reaction to medication for UTi (nitrofurantoin) even though I've taken it previously without any problems.

Bloods were ok, uti confirmed again and new antibiotics given (triap???) They put me on a saline drip as I was a little dehydrated and was home by 10.30am.

Oh, and they did my Covid test ready for my 2nd cycle next week and it is negative.

I have clipped my hair down to an inch all over but it looks uneven so I will probably take it all off. Like you @higgi my head is cold so a nice soft turban does the job. I can't say I enjoyed doing it but it's better than pulling away clumps of hair or moulting all around the house. 😳

I wish everyone a Happy Christmas and good times ahead for 2021. 🎉🎉☺️☺️

 

 

higgi
Member

Re: December 2020 Chemo Starters

Hi all ! Hope you all managing .. had chemo 2 EC yday was in n out no complications 😂 strangely this time it felt different ! With the C I felt all woozy n mouth teeth n gums felt it !! 
git home thought I was ok n put plastics in the cardboard n paper in plastics bin 🤣

then  I had worst headache ever and all through night ... didn’t get this b4 (nurse said I shud react respond as with 1st cycle 🧐)

but today feel much better as steroids kicking in ! 
shaved head to zero .. bloody freezing 😂 live in a beani ... ow come leg hair not budging ???? The cheek of it 🤣

hope you all have a great Christmas knowing you getting super powers to beat this 😘xxxxxx 

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

Hi karden, no I took them in mini cool box with ice blocks in, had ice lolly’s like in a mini milk shape and just keep putting it all round my gums and mouth while getting infusion, I wasn’t bothered what anyone thought, it was a tip a lady who had been through bc treatments passed into me before starting, so I tried it and luckily it worked 👍 I don’t know if frozen ginger or ginger nuts will help with your metallic mouth, I know others have had success with that for metal mouth 👍 you do your hair when you are ready ❤️ I was just in panic mode after 6 days in casa nhs when I did mine, it was a control thing, I’d already cut from waist to Bob prior to chemo and sent to little Princess trust ❤️ Remember no right or wrongs how you get through always fo what’s right for you 👍 I did go nuts with wig though, the steroids made me order like crazy 😁😁💕💕Shi xx

Karden
Member

Re: December 2020 Chemo Starters

Thanks for the tips @Shi  I will certainly try the ice lollies. Did the hospital provide them? Karen x

Karden
Member

Re: December 2020 Chemo Starters

hi @donkeywoman one of my Chemo drugs is Pertuzamab and mouth ulcers are a known side effect, I just didn't expect so many at the same time and that the pain would be so incredible. Fingers crossed that there's an effective treatment for next time. It started with one on the end of the tongue and then the rest seemed to appear overnight.

Re hair falling out, mine is shedding all the time and is all over my clothes. If I stroke or comb it I get a handful. I think I will lose a lot more if I wash it again but up to now I have no bald patches and my hair is normally strong and thick. I was hoping to get through Christmas Day when we will have video chats with family before I cut it off.

I also had a dry mouth and a metallic taste. Most food tasted bad but that has now improved a bit and I'm working out what is and isn't worth having. Still can't drink my favourite everyday tea though as it tastes very bitter ☹️

 

 

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

I sucked ice lollies while they were putting the red chemo in, it was a tip that helps preserve the mouth, worked well for me no mouth ulcers, might be worth a try. Don’t forget anyone getting thrush mouth you need fluconzole tablets, don’t let them fob you off with drops 👍 I was in casa nhs when my hair started coming out after my first round of chemo and thought I was going to have to shave my head in there, luckily I got home just before it was going to need clipping and did it as soon as I got home, it gives you back a bit of control because you make the decision when it come off if that makes sense. Hope this helps a bit ❤️💕💕Shi xx

JuliaS
Member

Re: December 2020 Chemo Starters

Thank you @grannyp 

The shedding is strange. It is more like I am moulting ! It isn’t coming out in clumps though but lots of individual hairs if I comb it or run my fingers through it. My scalp has stopped feeling tingly though so who knows......

All the best to anyone else with treatment  on these last couple of days before Christmas. When I was given the 23rd December my heart sank but now I am thinking that it will be good to have two done before Christmas and if I am still eating the festive treats and watching the 🎄 films well  into January so be it . My Christmas can last till my next treatment on the 13th January! 
XX 

 

donkeywoman
Member

Re: December 2020 Chemo Starters

@Karden oh, poor you. Mouth ulcers are so debillitating and, I think, under-appreciated. Glad you have turned a corner, but I'm not suprised you are concerned about the next cycle. Hopefully there is something stronger and more effective you can use. Did they come on quickly, or were there any warnings? I'm wondering if there is anything preventative that can be done. I imagine you would have thought of that if there was... 

I'm day 6 of first cycle (TCH) and sleeplessness is probably my worst thing. I sleep for about an hour at a time and often wake up very hungry. Steroids are long finished, so can't blame them. Does anyone have any tips for this? I was eating a belvita at 2am and weetabix at 6am today! There is no joy in eating, as my mouth is dry and tastes horrible, but I just can't settle at all. 

Take care everyone and hope that some festivity can seep into this bizarre Christmas...

Karden
Member

Re: December 2020 Chemo Starters

Hi everyone,

I've not posted here for a few days but have been following you all.

I've had an awful time with mouth ulcers on my tongue and lips, 15 at the highest count. My worst day was Sunday when I couldn't even speak or pass a glass of water through my mouth because of the pain. Thankfully, I turned a corner yesterday and was even able to eat something, albeit Weetabix, mashed banana,  potato and peas with gravy but not all together!!

I managed on Difflam mouthwash, baby Bonjela and paracetamol as advised by my hospital assessment centre but I don't feel any of these were strong enough.

This was only my 1st cycle and I'm worried about it happening again after my 2nd on 30th. I can't bear to think of going through the pain again so soon after and not eating hardly a thing for 3 days.

I'm seeing my oncologist on 29th and am going to ask for more effective mouthwashes and painkillers as advised on the Macmillan Cancer website.

To top it all my hair started coming out in clumps yesterday (Day 11). It's currently a shoulder length blonde bob. I think I'm going to cut it off maybe today then clip it on a no 6 attachment but I need to find the right moment. I can't leave it as the bathroom floor is covered and no doubt other parts of the house but you can't see it due to it being blonde. Like others, I thought I was prepared for it but it's not easy.☹️

 

Georgie76
Member

Re: December 2020 Chemo Starters

@dipitdee hi, thank you 😊 I did have very long thick hair, it's now extremely short and very thin and straggly. I will go with the cold cap tomorrow and just see how it goes. Think I'm coming round to the idea of cutting it all off if it comes to it now but fingers crossed I'm through the worst if it for now. 

I'm glad yours came out evenly, I think that is a worry even after shaving it that it's still patchy.

Fingers crossed it won't be too bad tomorrow. I know what expect now so don't feel as anxious as last time just really don't want to be too poorly Christmas day for the sake of the kids. Luckily they are both adults so they've taken over sorting dinner so that's one less worry.

Hope you enjoy the next few days as best as possible xx

higgi
Member

Re: December 2020 Chemo Starters

Hi @grannyp     thanks bloods ok so chemo at 11 tomorrow... this is my 2 nd of 6 but after my mastectomy and radiotherapy and examining the mastectomy tissue they will decide whether I need more then ... possible up to 18 more has been mentioned if necessary !!!!! But I’m just staying in the here n now and going so far so good ... bring on number 2 😂
no ones mentioned pic lines or ports to me ... good luck with it hope it goes well . 
Hope everyone else is managing ok . X

grannyp
Member

Re: December 2020 Chemo Starters

Thanks @higgi 

We would all like to not have to think about wigs and head coverings but as we do I decided to get a decent wig that I would be comfortable with. My hair hasn’t started shedding yet but it will be any day now as current day 14. What a lovely Christmas present😂

Hope all goes well with your treatment tomorrow- I am sure that when number 2 is done we can all really start to count down! I am having a port fitted tomorrow - not enthusiastic about yet another afternoon spent in hospital but I am told it will be worth it. x

grannyp
Member

Re: December 2020 Chemo Starters

Hi @JuliaS 

How is the hair shedding going? Fingers crossed it isn’t too bad and you have a good result with the cold cap. 
Good luck with treatment tomorrow. I feel that once we have ticked two off it will be a big boost - it really will begin to feel we are counting down! 
x

dipitdee
Member

Re: December 2020 Chemo Starters

@Georgie76 Hope the cold cap works for you, hopefully it just thins out a bit. Have you got thick hair to start with? I didn’t use the cold cap as I couldn’t bear the thought of extra time it takes. Even though I was expecting it, it was still horrendous seeing it come out in clumps yesterday. That was day 18 after EC for me. Decided yesterday to shave it all off and I feel much better. I was surprised after shaving it though that there weren’t patches or anything. It seems to have thinned out pretty evenly 🤷‍♀️
Going to enjoy my Xmas now before my next dose of EC on the 30th! Hope everyone manages to have as good an Xmas as possible xx

Georgie76
Member

Re: December 2020 Chemo Starters

Spoiler
 

Thank you 💟 I look forward to the tips 😊

 

I spoke to my nurse today in preparation for my second treatment on Wednesday, she advised me to keep going with the cold cap too as she said it could settle down in a few days so it would just be thinner rather than all gone so fingers crossed for that possibility 🤞 I actually didn't find the cold cap too bad, it was just the headache I had afterwards but I've been advised to take paracetamol before chemo this time which should ease it a bit.

The loss does seem to have slowed down a bit today and it's primarily at the back, underneath that I have lost which is coverable. I've also ordered a wig today so hopefully that will help a bit.

Hope everyone is ok. It's not the best Christmas for any of us but I intend to try and make the most of it although I will probably sleep through most of the day 😄

higgi
Member

Re: December 2020 Chemo Starters

Hi @JuliaS @aw fab news !  So u good to go .. I’m always anxious that I hope bloods ok to go n I don’t pick up a bug ! 
I know I was just saying that I dont wish lockdown on everyone but it does cushion the blow for us 😂  xx

 

JuliaS
Member

Re: December 2020 Chemo Starters

Hi @higgi  No I had mine done on Friday. I went to the hospital for them and then the doctor rang me later in the morning to give me the go ahead for Wednesday . I think it was brought forward from today as the doctor is on holiday this week . I also had a flu jab that day in our sports centre car park! Funny when I used to here there and everywhere at Christmas and my only outings this month have been medical! Only consolation if we had to be out of circulation any year 2020 not a bad one to choose as not much happening anyway . Not that any of us chose this particular adventure! 
Hope all goes well with your treatment. 
Xx

higgi
Member

Re: December 2020 Chemo Starters

Hi @grannyp ... the wig sounds fab ! So glad it went ahead and u like 👍

higgi
Member

Re: December 2020 Chemo Starters

Hi @JuliaS @great work with the cold cap ... do u have bloods tomorrow like me for Wednesday? X 

higgi
Member

Re: December 2020 Chemo Starters

Thanks for those lovely words ... look forward to the tips and shiny new hair ! I was known for my curly long hair swept up in a high pony ... died purple or magenta until recently!  That’s why a wig was not an option as it cudnt replicate my high pony 😂 

patchy stubble is the new look 

- great quote 

“why try to fit in when you can stand out” love this xx

JuliaS
Member

Re: December 2020 Chemo Starters

morning @Georgie76 

i used the cold cap for my first EC on 2nd Dec and have had a tingly scalp for a few days and yesterday started shedding.
I had a look at the Cancer Hair Care website which recommends that you continue with the Cold Cap even if you lose quite a bit of hair as there is evidence that it grows back quicker if you do.
Of course that depends how comfortable you found the experience.  

So much to think about but so good to have this forum to share our concerns with people who understand. 
X

 

JuliaS
Member

Re: December 2020 Chemo Starters

Morning @grannyp 

so glad you’re appointment was able to go ahead and was a positive experience for you.

My scalp has been tingly for a few days and yesterday started a bit of shedding. This would be day 19 after first EC . 
I am going to distract myself and make some mince pies this morning. Will wrap it in a scarf first as no one wants a hairy mince pie! 
Have a good day! 
Xx

grannyp
Member

Re: December 2020 Chemo Starters

hi @JuliaS 

Despite entering Tier 4 today, my wig consultation was able to go ahead under business rules and ensuring all COVID precautions in place. I now have a wig ready which is so like my own hair - albeit my own hair on the day after an expensive hair appointment!! - that it is almost surreal. I am so pleased- the service was second to none and I had so many wigs to choose from. I was dreading this meeting really - another reminder of the unwelcome changes we all face. But it was a very positive and encouraging experience. Now to see what happens with my hair in the next two to three days when shedding is expected. 
x

 

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

Georgie ❤️❤️Think quite a few of us had been rapunzel locks all our lives before we had to have chemo ❤️ It is hard because think most of us were known for our hair and it’s another bit the journey strips from you, I thought of chemo like going into chrysalis like a butterfly then emerging after chemo shiny and new and new hair, I’ve plenty of tips to pass to you to help the hair grow when your treatments are finished 👍all given to us by amazing people who had 💪💪💪before ❤️ Be kind to yourself you are doing all you can you are beautiful and amazing and if you get chemo curls (after being straight hair) I’ve tips for that too 👍 big 👭💕💕Shi xx

Rachaelxhearts
Member

Re: December 2020 Chemo Starters

Thank you, this book was recommended to me a few days ago, so I added this to my amazon wishlist, which my family now have for xmas so fingers x this arrives under the tree soon 🙂 x

Georgie76
Member

Re: December 2020 Chemo Starters

Thank you guys, it has been really difficult to deal with. It is nice to be able to talk to people who understand.

I tried to prepare myself for it but as I used the cold cap I think I convinced myself I would be one of the lucky ones it would work for.

I've had quite a bit of soreness on my scalp which probably means it's all coming out 😔 I thought I could deal with it thinning as I have such thick hair but I'll see how it goes today.

You are right @grannyp  I know they are trying to be kind but I find myself getting cross with them because they are not in my position and I don't want to be that person. I'm sure after a few days I'll feel better about it all. 

I've pretty much worn a scarf or beanie since it started so hopefully I will get used to that. 

Not even sure if it's worth trying the cold cap again this week.

Thank you for your support though ladies and I hope you all manage to enjoy your Sunday 💕

grannyp
Member

Re: December 2020 Chemo Starters

Hi @Georgie76 

  • You are absolutely entitled to have a bad day and to feel upset about losing your hair. Bad days come with the territory and here is a really good place to voice your feelings - everyone understands. I am one or two days away from when I expect to see hair loss and I know that I will not be in anything resembling a good mood this week! I think people are trying to be kind when they say that ‘your hair will grow back’ and ‘it’s a small price to pay for giving yourself the best chance’ etc but unless you are going through it you don’t know what a truly enormous issue the hair loss is for some people. 
    Just get through the next few days as best you can and I am sure you will start to have some good days. Good luck with your next treatment x
higgi
Member

Re: December 2020 Chemo Starters

Aw Georgie hope you feeling a little  better ! I stick a beanie on as soon as get out of shower as I look like a thug in the mirror 😂... love the shower massaging the scalp . U may notice some ‘head soreness ‘? For me this happened day 18/19 then it really started fall . 
ive told self I’m only allowed to feel the lumps once in shower then that’s it !

again going out for a walk with a friend helps ... distracts me for a while .. so therapeutic. 
For anyone with sore mouths ... as I said up to now mouth 👄 is ok I use Colgate flouriguard rinse 1 min . Hope that helps 
wishing you all a fab Sunday ! Xxxxxx

 

 

Shine13
Member

Re: December 2020 Chemo Starters

@Georgie76  I don t think you get  through this  without the bad days.  Trying to be positive may be to much work today. You just need to get through today.  A better day won t be far away. 

Georgie76
Member

Re: December 2020 Chemo Starters

I really don't know how to measure it properly and think I'm driving myself insane feeling it all the time. I was convinced the other day that it was smaller and that I could get away with just having the 3 FEC treatments then going for surgery as they did say in the beginning that was an option. After speaking to my nurse yesterday though she seemed to think I would need to complete all 6 before surgery ☹️

Mine is HER 2 positive aswell so it did grow pretty big and quick between first feeling it and when treatment started. I don't think it is as hard as it was though.

I've definitely been feeling down since yesterday as my hair is coming out thick and fast now, especially tonight. I just don't feel ready to lose it completely yet and and hate seeing these massive clumps come out 😔 I've always had really long hair so to have it cut short before my first treatment was a massive shock in itself, now to just see it all coming out has really hit me. I know people keep telling me it's only hair it will grow back and I know I should just be thinking positive that it's the treatment working but I can't! I'm just really struggling with it right now and the thought of having my next chemo in a few days fills me with dread again after recovering from the last one. Just not having a good day today.

Pyewacket
Member

Re: December 2020 Chemo Starters

Hello everyone,

Good to read about everyones situation, it really helps. OK here - been pretty good since about day 10, although I'll feel energetic and then doing something pretty minor like clean the bathroom and just feel exhausted afterwards. 

@Rachaelxhearts that's rough, they told me no indication of node involvment, then it turned out 7/23 were positive... I don't envy them having to advise us - a fine line of balancing the need to be positive but realistic. So some will be pleasantly surprised things are better than they thought, and others, well not so much. My sister had TNBC about 10 yrs ago, found the chemo a bit rough at the time, but recovered perfectly and has had no issues since - and things are forever improving as others have said.

@Georgie76 I was put on Tamoxifen in March due to Covid, with some hope the lump would shrink enough to avoid mastectomy once surgery was available again. I so feel for you - for 7 months i was constanty checking it, trying to find ways of measuring it accurately at home (involved the tool chest) and generally 'ohh i think it's a bit squishier' and 'mmm seems a little smaller overall'. Seeing as I was checking it every 5 seconds I don't think I was a very good judge at all 🙂 And no it didn't shrink after all...but now i know that's not surpring for the type i have (would normally be surgery first for me).

@Guest user oh you're a bit ahead (pardon the pun...) of me. Day 14 i washed my hair... mmm that's a lot of hair in the plug hole. Day 15 in the evening it began coming out if i tugged it. So today was day 16, i washed it and it didn't seem *too* bad from a plug hole point of view, had combed and run my fingers through it alot in the shower. I then towel dried it and as I pulled the towel away there were two huge wads of hair! I've given it a chop to experiment, cut in a fringe and made it a short bob. Tommorrow will go for something much shorter just to see what it's like. Then I imagine it'll only be another day or two until the other half's clippers come out. TMI but i tugged my pubes out as much as possible in the shower as they're itchy when they just drop out in your drawers 🙂

Take care all, Pye xx

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

Rachael hearts ❤️ Surviving triple negative breast cancer by Patricia Prijatel is a book that helped me, she is 2 x tnbc survivors. It’s not for everyone but it helped me a lot, so wanted to share with you ❤️ 💕💕Shi xx

Shi
Community Champion
Community Champion

Re: December 2020 Chemo Starters

Higgi ❤️❤️ Please remember there are new treatments coming through all the time and please do try keeping away from stats, a lot are out of date. Just wanted to share with you all to give you but of light and hope my gran was 44 when she had breast cancer and 95 when she passed, so if that’s not a benchmark for us all to aim for 💪💪💪💪 keep focused ❤️❤️ Like you are leaping over the grand national hurdles without the horses ❤️❤️❤️ You’ll soon be on the home straight 👍👍👍❤️❤️❤️💕💕Shi xx

higgi
Member

Re: December 2020 Chemo Starters

Hi everyone ! Hope u all managing well this weekend ... 

My hair started falling out even more and even tho I had my head around it hated seeing handfuls ... plus it was blocking the plug holes up in shower 😂.. so I got hubby shave it number 1 style - so sitting here with a beanie on ! It’s not fell out completely and I can’t wait til it does as this patchy look not a great look .. I am laughing as I’ve always said from day 1 ... as long as I survive I’m happy . 
done a lot of reading up as I thought I cud handle it ... but I ended up feeling a tad down as I read my her 2 was aggressive n fast growing and that combined with lymph involvement meant my prognosis wasn’t super duper let’s say . Then I remembered wat the lovely consultant said ... she was so positive all she ever said was “it’s great u her2 u can have targeted therapy “ and with the lymph she said “there’s only 2 involved that’s really good “. I’m smiling because they really do make everything positive and hopeful. I’ve got to hold onto her positivity.  
I will b re MRI of breast jan 12 to see how it’s responding after 2 cycles . I’ll b beside myself then !!!! 
I don’t start the targeted chemo til feb . 
big hugs to you all ! Hope side effects are bearable 

yours truly 

baldie babes xxxxxx aka Jan

ps mouths been great so far 😊

donkeywoman
Member

Re: December 2020 Chemo Starters

Hi @Rachaelxhearts and all. Horrible to have that change of treatment, especially so close to Christmas and your birthday. Mine started off pretty straightforward,  dcis, surgery and hormone treatment. Then found another area, then mastectomy,  then grade changed from 2 to 3 and Her2 positive.  But I find it weird how calmly I seem to have taken it. Probably a defence mechanism? First chemo yesterday (TCH) which went fine. The team were lovely and , even though my nurse put the fear into me about an allergic reaction to the Docetaxel,  they sat with me for the first 15 mins which was so reassuring. 

No major problems yet, think the steroids are keeping me ' up'. And giving me a very red face! Finish them tonight so will see how the next days go.

Take care all, especially those of you with such sore mouths. I have some duotene mouthwash,  would you recommend I start using it now? My mouth is just a bit dry so far...

Deep breaths all....xx

JuliaS
Member

Re: December 2020 Chemo Starters

Hope you do have a happy Christmas and happy birthday for the 29th . Xxx

JuliaS
Member

Re: December 2020 Chemo Starters

Morning

Thank you grannyp for the website. I did the Look Good Feel Better zoom workshop on Hair Care yesterday with a lady from the charity Hair Cancer Care and I  highly recommend it . She was so full of information,  good advice and was very reassuring . Their website is worth a look too. 
All the best for your appointment, it will be interesting to hear how it goes. 
Xx

Rachaelxhearts
Member

Re: December 2020 Chemo Starters

Hi, yes it was a tough blow just before Xmas but I guess there’s never an ideal time. 
it’s my 40th on 29th, my 2nd chemo will be 30th, so I’m hoping I’ll have a good Xmas and birthday. I remain positive and keep my fingers x 🙂 x

dipitdee
Member

Re: December 2020 Chemo Starters

@higgi I’m having chemo first too! I’ve never been able to feel my lump, I discovered my tumour when my nipple started becoming inverted. I have ‘dense breasts’ apparently so I can’t really distinguish the lumps, however I have felt some discomfort and pains around where the tumour is that in my head is the chemo killing that sucker! 

Having a really **bleep** time with my mouth at the moment. It turns out I have a cyst where my wisdom tooth is impacted in my gum. Been given antibiotics and I’m praying they work as it’s really painful just now. Dentist thinks the chemo may have triggered it, so hoping it doesn’t come back every cycle!

Shine13
Member

Re: December 2020 Chemo Starters

@Rachaelxhearts 

That 's tough swapping to chemo for Christmas when you thought you would nt need it.  I am having chemo first but so like the idea of having the tumour cut out.

Shine13
Member

Re: December 2020 Chemo Starters

Breast cancer turns out to very complex with the different types/ receptors etc. I know some would rather not know but for anyone like me who can 't get enough breast cancer science  I found the google podcasts investigating breast cancer really interesting. Interviews by leading oncologists and scientists in their specialist research area. 

I also have some invasive and some ductal with a tripple positive tumour that seems to be more rare.  Anyone else?  

On the plus side I have a chemo tan and have lost a bit of weight so have nt looked so well in a long time. Definately dreading the mouth ulcers but so far plain sailing.

Xx

Rachaelxhearts
Member

Re: December 2020 Chemo Starters

Hi all, a bit late to the thread, but also a December chemo starter.

Chemo was never in my treatment plan, initial diagnosis was DCIS and I had surgery (Mammoplasty) 6 wks ago, was then due for rads only. 

Diagnosis changed following histology on my lump, to TNBC. I was referred to oncology and discussed chemo. Due to my age (under 40) they wanted me to have chemo too, so I will start it on Wed (23rd).

I will be having 12 x 1 weekly Paclitaxel and during those 12 weeks I'll also have Carboplatin every 3 weeks. Once my genetic testing results are back (probably another 5 weeks) this may change, but that's the plan for now.

Saw my breast surgeon consultant today & he's happy with my scarring/swelling from surgery, so gave the green light for chemo.

 

Good luck all 🙂 Rach x

Georgie76
Member

Re: December 2020 Chemo Starters

It is horrible physically feeling my lump and reminds you how real this all is! I've convinced myself it feels smaller than it was but I really have no idea! 

I will definitely have a look at the book, thank you.

Hope you enjoy your walk 😊

higgi
Member

Re: December 2020 Chemo Starters

Thanks everyone hope you all feeling ok today ! 
hi georgie u sound very similar to me in your experience.. I have a few lumps n bumps 😂 some high grade one grade 3 and 2 in lymph ... some days I find it hard when I can still feel the lumps but know I have to trust in the treatment plan !  Liz o’riordan (one of authors of the book posted ) has an excellent blog when she went through this 2015 ... following plan chemo surgery radio ... well worth a read . Liz.oriordan.co.uk

hoping get out for a rainy wet walk today ! If too much hair doesn’t fall in my eyes 😂😘

grannyp
Member

Re: December 2020 Chemo Starters

Morning all

Keeping up the wig chat, the business name and website for the lady who is visiting me on Sunday is https://www.panachewigs.co.uk/

May be of interest to anyone who is based in the south east or London.

I will update after I have had my consultation and fitting.

Hope everyone is coping ok today and feeling as well as possible. Have a good day😊

Patsy x

 

Karden
Member

Re: December 2020 Chemo Starters

@higgi 

I've started on chemo before having surgery.

I'm on the ROSCO trial so I'm having 4 cycles of TC first and I'm 8 days in on 1st cycle.

My main problem now is a very sore mouth, so many ulcers inside my lips, too many to count, that's why I'm here at this ridiculous hour.  I'm going to call my specialist nurse for advice but I know there's a Gelclair mouthwash that has to be prescribed and I hope it will bring some relief as I can hardly eat or sleep because of the constant burning pain.

 

Georgie76
Member

Re: December 2020 Chemo Starters

Hi, I'm day 18 now so although officially I'm a November starter, I think I'm closer to the same stage as you lovely December ladies.

Here's a little bit about my experience so far.

I was diagnosed with grade 3 tumour in my left breast at the beginning of November.

@higgi  I am having chemo before surgery too followed by radiotherapy.

I had my first FEC treatment on 30th November and had about 10 days where I felt really rubbish afterwards. I had the cold cap, so although it wasn't too bad at the time, I had the worst headache ever for hours afterwards. I then went on to have a bout of constipation following by 3 days of diahorrea 😩 

Another one of the side effects that wasn't very pleasant was feeling like my skin was bruised all over for 2 days and after my injection my bones really did ache and were quite painful. 

I also struggled with the fatigue which made me quite depressed at times as I just felt I was wasting whole days sleeping! After speaking to another lady who has been through this treatment she told me to stop being so hard on myself and rest when I needed, so next time I will try and take that advice.

Thankfully I recovered quickly after that and have been able to get on with things fairly normally. My hair did start to moult a bit yesterday so I've worn a scarf today to stop me putting my Fingers through my hair so much and wore a sleep cap last night to try and stop the friction on my pillowcase. No idea if it's going to help or not but worth a go. 

 

 

donkeywoman
Member

Re: December 2020 Chemo Starters

Hello all, loving the wig chat! I've bought hats and beanies from Annabandana too, very reasonable! A friend has lent me her wigs which look a bit odd, but I would wear them  at a pinch!

My first chemo is tomorrow, tch (Doxetaxol, Carboplatin,  herceptin which is called tratsuzomab). I've had my 2nd dose of steroids so feel quite perky! But in bed and hoping for at least some rest if not sleep.

I'm the other way round  @higgi , had surgery, now chemo...

Hope everyone's mouths, hair (all over 😉), guts and most of all spirits are coping this evening. 

I'll check in after chemo if I feel able!