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January chemo starters ?

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Re: January chemo starters ?

Firstly Fel I’m so sorry am rubbish forum friend by basking in the ease of WhatsApp. Haven’t heard from the hotel yet but will check your PM and get on it at the weekend.

 

Ali...so some good and some bad. Phew it’s tough. Personally I’d do anything to reduce the risk of reoccurrence. My tumour was also right near the skin and infiltrating the nipple but the surgeon still got clear margins without taking loads away and both implants match. I don’t really know much about the diep stuff. 

Its one of those what’s right for you. What do your instincts say? Xxx

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Re: January chemo starters ?

So lymph node biopsy was good I think. 1 postivive node out of 6. Still cancerous but it’s now out. Radiotherapy needed but no clearance.

However big decision on surgery. The tumour is only 5mm from the skin which is close but the surgeon says she only needs 1mm round the boarder of the tumour. It’s so far inward of my breast that if we take all the skin from there I can’t have an uplift. They won’t operste on the other breast to look good and the flap with be much bigger and less hidden by the nipple (once constructed). Obviously slightly higher chance of local reoccurance but makes no difference to secondaries because that’s not how it works - so they say.
So I have to decide do I take less skin. Slightly increase risk of local reoccurance - I am having radiotherapy to that area so that should kill it all off but never say never. And have great looking boobs. Or do I have much more off do minimal cosmetic (still diep because of need for mastectomy) and droopy boobs.

I hate making decisions. And never put myself first. Feel totally out if my depth.


Meanwhile I’m in x Ray to have a neck x ray because I’ve had pins and needles in my hands/arm for a few years and it’s getting worse and waking me in the night. I’m not worried it’s more cancer as I’m confident it would have shown on the CT scan. Could be benign lump ?? More likely muscular skeletal problem that needs Physio. But it’s just another of those itritations I can do without.

Oh boy - wading in the murky waters again !
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Re: January chemo starters ?

Amy I’m also on Herceptin and know this is a side effect but I guess we all hope it doesn’t happen to us. I hope they get it sorted soon and you get back on track. Thanks Paloma, yes nearlly there, so close I can almost touch it! Thanks Dealdoh, good to know have you at doing well and what is going on with you at this stage, gives me something to look forward to. Thanks Shi, the May ladies are lucky to have you x
Shi Community Champion
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Re: January chemo starters ?

Hi fel😘😘the hair will come, Rosie’s just rapunzel and is lucky having it sprout so quick, a lady I did Chemo with was the same, I was turtle head and she as sporting an Annie Lennox 😁Amy, sorry to hear that about your heart, your team will have seen it before and know how to treat you, so be 💪💪💪lovely 😘Michelle, close to 🛎🛎🛎🛎time for you 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻We’ll have the 🎊🎊🎊🍹🍹🍹🍹ready to celebrate with you. Aliand keeping everything 🤞🤞🤞🤞for tomorrow for you beautiful 😘😘😘paloma, I don’t know if saunas and jacuzzi’s can be done after this journey? I thought I’d read somewhere it was a no no, I could be wrong on this but please check before you all book something and think there was a case in the news where they’d refused someone too who’d had our journey, again I could be wrong but please check I wouldn’t want you beautiful 💪💪💪amazing ladies to have your meet up day spoilt by any red tape. Got the may ladies having a party on the plane at the moment, they are about half way to Greece just now and few switching to t, so any words of wisdom you can offer would be great so they can see how well you are all doing so soon after finishing chemo. Thanks ladies ❤️❤️💕💕✨✨shi xx
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Re: January chemo starters ?

Sorry to hear about the Herceptin side effect propblem Amy, hopefully the new tablets will sort it so you can continue.  

 

Fel, I have had five injections of the biophosphate, Zometa now and will have to have four more over the next two years.  I haven’t had any problems with it at all.  in my case it is being used to prevent osteoporosis.

 

Almost there now Michelle.  I am about 10 weeks post chemo and three weeks post radiotherapy and I feel great.  My hair is growing back, although patchy in places and my eyebrows and eyelashes are coming along as well. 

 

I went to see the genetic counsellor today and it was decided that I should be tested for the BRACA gene.  Ho hum - waiting game again.

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Re: January chemo starters ?

Hi Fel, Shi and Michelle
I can't believe you've nearly finished Michelle, that seems to have wizzed by, well done 😘. We'll done for finishing rads Fel and nice to hear you are able to go hatless now 😘, sorry you have missed out on the WhatsApp stuff.
Amy, sorry to hear it has affected your heart, how did they find out? Hope it is sorted soon 😘
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Re: January chemo starters ?

Hello all,

Had RADs planning today and start on the 31st, bit of a pain that it's happening over school hols but we'll manage.  Bit of a pain that it's happening at all tbh 😞

Also, had a call from my onc in the week saying that the Herceptin is affecting my heart (known side effect) so that's on hold and I've been prescribed some tablets to get it back to normal...never straight forward with me, lol.

Biophosphate infusions? What's that Fel?  I hope it's something kind!

Wow, nearly there Michelle, awesome!! 

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Re: January chemo starters ?

Ok thanks for the warning re the meltdown, I’m feeling ok at the moment but it always surprises me how these things sneak up on you. Fore warned is fore armed as they say, or something like that anyway!!
Thanks Shocked, it’s good to know that was the hard bit hoping the rest is easier. Hope you get your counselling sorted, has to b preferable to more pills like you say.
Xx
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Re: January chemo starters ?

Sorry Michelle missed your post you are so close to finishing the hard bit now xx
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Re: January chemo starters ?

We are still here - hi Shi and Fel

 

i still have next to no hair 🤨 it’s coming through very very very slowly. I’ve been referred to a counsellor as keep having little wobbles and trying to avoid antidepressants as I already take far too many pills. Hope you are both good. 

 

 

 

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Re: January chemo starters ?

Hi Michelle, I don't know yet, I get the results on Wednesday, hoping that its clear but if not it's no biggie as they will do the clearance with the mx. 20th - ysy it will come v soon, dont fret if you have a meltdown before then most of us seemed to before our last one - totally weird !
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Re: January chemo starters ?

I was wondering where everyone had gone too. Glad to hear everyone is getting on with normal life. I look forward to that. Aliand how did the results go from you lymph nodes? Is it full clearance or just a few. Good luck with the surgery and recon I hope it all goes perfectly for you.
I have my final chemo on 20th, counting everyday, but not long now.
All the best to you Aliand and the rest of the January squad xxx
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Re: January chemo starters ?

Hi Shi, Hi Fel,

theres not a lot going on it thr group, mainly silly talk about hair, husband and parties. Think someone has emailed a spa about dates and prices for Octiber but not got any further. 

We are all tottering along, some with radiotherapy and me having surgery next week. Fel we need to ge you a smartphone.

Great that you've finished rads.

 

I'm not wearing my wig at all havent for a while, everyone else is abandoning bit by bit. Wish my eyelashes/eyebrows would catch up though.

 

Not hear of biophosphate injections hope they dont have nasty side dfferct for you.

 

xxx

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Re: January chemo starters ?

Hi Shi,

I also was wondering where everyone has gone.  I know a What's App group was started but unfortunately I don't have a smart phone so couldn't join in.  I am doing ok rad's all finished now next treatment for me is having two biophosphate infusions.

Hope you are enjoying this fantastic weather, I now only wear my wig when I go out as it's just too hot.  Hair coming along but still very short.

Take care.

Felicity

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Re: January chemo starters ?

Hi ladies, hope you are all doing well 😘😘have you all gone off onto a Facebook group now? Anyway just wanted to say hope you are all doing ok😘😘 💕💕✨✨shi xx
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Re: January chemo starters ?

I was there too! I was meant to be 9.45! I had a striped skirt on! My problems are never ending & I was a nervous wreck so didn’t want to say are you Amy if it wasn’t you! Good luck with your radiotherapy xx
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Re: January chemo starters ?

Hi Tracy, yes I was there with my partner for a 10am appointment so it probably was me if it was before 10.30. I'm glad it was a morning appointment as that waiting room would be stifling in the afternoon in this weather - and a longer wait most likely!

Hope you are getting on ok? ☺

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Re: January chemo starters ?

Hi Amy, were you in clinic Thursday morning? I was wondering if that was you as I don’t usually see any younger ladies there? I was told you need to wait 18 months after radiotherapy before a reconstruction. Xx
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Re: January chemo starters ?

Michelle, I'm not sure if it's not offered at my hospital or just in my case?  I didn't ask at the time, I was a bit blown away, my surgery was the week following dx 😯

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Re: January chemo starters ?

Hi ladies 😘😘the downy facial hair does go, it’s a bit 😳😳and you think will I need to immac my face, but you don’t it’ll be ok ❤️❤️💕💕✨✨shi xx
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Re: January chemo starters ?

Thanks Aliand and Amy it’s so helpful to hear about your experience. It’s surprising what you pick up along the way in this new world we are all living in now. I’m preferring the DIEP option so it’s interesting that I might be able to have that before rads and that I may not have to have a full clerance.
Amy was there areaon why you couldn’t have a recon straight away or was it simply not offered by your hospital? I saw the post on knitted knickers they look great. I learnt how to crochet last year so might even give making one a go when I know my size! Although I’m not great so could end up looking even more lopsided!!
Thanks again
Michelle x
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Re: January chemo starters ?

I had my mastectomy in Nov and when I asked on Thursday about when reconstruction might be she said at least not for another 12 months.  It doesn't bother me, although I kinda wish I had both off rather than being lopsided for that amount of time, but I also asked about that too and she said that there often isn't any benefit to taking both breasts of the other is healthy and no family history.  The only bother will be if we want to go in a sun holiday next year but I can always use my aqua knitted knocker 😁👍

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Re: January chemo starters ?

Michelle it depends on your surgeon and the type of recon. If you are having implants they have to wait until agmftet rads as the rads wrecks them. I’m opting for a diep so should be good to go. Though from what I’ve heard of other people some hospitals don’t do it in one go whatever. I don’t know why.
I had only 1 lymph node affected according to ultrasound but they’ve done this further biopsy as it seems to have disappeared. Originally I was told I’d need a full clearance too. Sometimes things change along the way. Xxx
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Re: January chemo starters ?

Thanks for that Aliand, so you will find out in 2 weeks, I hope the mews is good and they have all the buggers out that need be. I have been told that I will have to have all of my lymph nodes out even though according to the ultrasound and one biopsy they only found one infected. I’m not looking forward to that due to the risk of lymphodema. I haven’t really spoken to anyone about it yet as it seemed a long way off but I guess I will soon.
I’m also having a masectimy but I was under the impression if you were having rads you had to wait to have a recon, have I got this wrong?
Thanks for your insight.
Chemo went fine today, 5 down, 1 to go and now I find out I might get a furry face and bumpy limbs!! It really is the gift that keeps on giving!! X
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Re: January chemo starters ?

Amy...brilliant news 😀😀😀

Starfire, yes on the downy face hair and I did have the leg thing. I put it down to hair follicles and the softer hair trying to push through xxx

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Re: January chemo starters ?

Starfire my friend had the downy hair on her face. It went eventually but she had it a while and it was def after the chemo.
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Re: January chemo starters ?

Hi Starfire,

I have got the goose bumps rash on my arms.  I am going to mention it to my GP when I see her next week.

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Re: January chemo starters ?

I just wanted to ask if anyone else following chemo has had these undesirable effects.

 

1: Downing hair growing back all over face.

 

2: A permanent goosebump effect on calves and lower arms... not itchy but not attractive.

 

lots of love to all xxx

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Re: January chemo starters ?

Starfire, 🤞🤞🤞for you my lovely, you are the marine of the thread for sure 🤼‍♀️🤼‍♀️🤼‍♀️Amy and Michelle ❤️❤️❤️❤️Excellent news, Aliand let’s make it the hat trick when you get your results too 👍👍👍👍hope everyone doing ok with 😎😎😎keep 😁😁💃🏻💃🏻🕺🕺🕺💃🏻💃🏻Ladies your bus is winging round the island to club Tropicana ❤️❤️💕💕💕✨✨✨Shi xx
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Re: January chemo starters ?

Michelle SNB sentinel node biopsy. They have taken out 4 nodes from my armpit to decide how many more if any they need to take when I have my mastectomy and recon next month. It will depend on histology results. They don’t seem to do them on everyone no idea what the criteria is.
After that I’ll have radiotherapy. I’m near the back of the group for treatment as there’s quite a few who had surgery first.
22 days will come soon enough. You are doing fantastic x
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Re: January chemo starters ?

Great news Amy and Michelle, so pleased for you both Smiley Happy xx

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Re: January chemo starters ?

What are SNB results? Good luck and glad you aren’t worrying at the moment. What more treatment do you have to have? X
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Re: January chemo starters ?

Yes Aliand in 22 days I will have had my last chemo! Fingers crossed the next 2 run smoothly, it will be a massive relief to have this section of treatment over. Surgery next but cross that bridge later!! X
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Re: January chemo starters ?

Fab news Amy and Michelle! Smiley HappyHeartHeart

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Re: January chemo starters ?

Excellent news both Michelle and Amy.

 

I survived my SNB results in 2 weeks but I'm not worried )at least not yet) as treatment not ended

 

Michelle have you just 1 more then ?

 

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Re: January chemo starters ?

Great news Amy, I so pleased, relieved and happy for us both!! X
Thanks Starfire x
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Re: January chemo starters ?

Amy ✊💪Michelle✊💪

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Re: January chemo starters ?

So it's good news all round then - my scan showed no sign of residual disease, woohoo 😁😁😁

Start rads in 4 weeks 👍

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Re: January chemo starters ?

Thanks both, yes you have to celebrate the good stuff when it comes because I’m quick to feel down on the negatives. I think that is what I have too, but like I said memory like a goldfish!
Chemo number 5 tomorrow, I’m ticking them off!
Thanks again everyone x
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Re: January chemo starters ?

Great news Michelle, maybe a little celebration, you deserve it x

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Re: January chemo starters ?

Hi Michelle...I had a liver one, mine was a Haemangioma. The fear is crippling but the relief is oh so good 😀

So pleased for you...

Good luck Amy is it tomorrow? Xxx

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Re: January chemo starters ?

Soooooo relieved! Had ultrasound and liver thing looks like a type of birthmark, she gave me the medical name but I’ve forgotten! The ovary seems to have 2 cysts and they are just cysts!!! So relieved. Until the next bump in the road! Thanks for your support, it really helps x
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Re: January chemo starters ?

Good luck Amyjb x

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Re: January chemo starters ?

Good luck Amy and Michelle, I'm thinking of you and keeping my fingers crossed for good results for you both xx

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Re: January chemo starters ?

Good luck Amy I hope it is good news for us both. XX
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Re: January chemo starters ?

Good luck for today Michelle xx I get my results today as well, I'm both nervous and excited, eek 😁

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Re: January chemo starters ?

Thanks so much. I really appreciate you all taking time to reply. I know ultimately I have to wait until tomorrow to get the answers but your replies have helped, it’s good to hear from people who actually understand how I feel. Thank you xx
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Re: January chemo starters ?

Ahh Starfire, it just doesn’t stop for you does it.  Hug for you and for Moomoo xx

 

I did something silly this evening.  I decided to go along to a hula hoop class.  OH MY GOD I THOUGHT I WAS GONNA DIE😖🤪😖😖 😧😦😵.  Luckily, if there is one thing this cancer trip has taught me it’s to listen to your body .............. I was listening really really hard and my body kept telling me stop.  Out of the 45 minute class, I probably only hooped for about 15 maybe 20 minutes but it was very tough.  Maybe a little too much too soon. 

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Re: January chemo starters ?

Hi all
Michelle hopefully you will soon have a positive conclusion to your cysts. It's so stressful when things are picked up and no one can reassure you until you get the results concluded. I didn't have cysts but I know they pick up all sorts on ct probably would never of known about and live with . So hopefully it will be a good outcome.
Fel....well done nearly there!
Starfire...its relentless for you and this medication and allergies.Hope it works out better for you with the new med!
Had lovely weekend away no tears! Until back home ....back come the tears! hot weather itchy sore skin from rads and lymphedema to arm worse....feeling very sorry for self sat inside next to fan with no motivation for anything!...so when do we get better? I'm so impatient....though 8 months long so far...must be thankful as I'm still here....reminder to self must stop moaning !....but isn't it relentless! Xxx
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Re: January chemo starters ?

Hi Michelle,

 

Good Luck for tomorrow. I had a polyp on the womb removed in the April before being diagnosed in the September with BC. Are you hormone positive? They said straight away what it was but it was sent away for checking afterwards. Everything was fine and hormones, age etc can cause these issues. Good luck and let us know xxx