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January chemo starters ?

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Re: January chemo starters ?

Thank you kind ladie and Shi I might ring them tomorrow about maybe some reflexology or something. Moomoo you are so right it’s hard to know where you got fit any more bursts of emotion in!!

I know I never realised at the start of this that getting over it was almost as hard as getting through it...lots of love to all this Sunday morning xx

Shi Community Champion
Community Champion

Re: January chemo starters ?

My darling beautiful ladies 👭👭please phone your bc nurses and speak to them and let them know how emotional the end of chemo has made you, there are courses at your trusts and things like reflexology and also coping courses and things that they can get you on, Ive known a lot of ladies benefit from these, please also call the BCCF line too, they will be supportive and listen my darlings, it is an emotional time and you have all do be so amazing and taken such care of each other you are beautiful, beautiful ladies. Keep focused your on the bus to club Tropicana now, think of it as the bus from the airport and you’ve run up the beach from palma and you’ve got to go to palma nova, magaluf, Up to soller, Porto soller, back to palma then over to all of us in club Tropicana between Cala boba and Callor Millie, I expect to see those January ladies flags flying out the windows of the bus and singing company bag from the onboard karaoke so we hear you coming so we can get the glitter hotpants ready for your memberships 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻 Right group sing song and the song is ‘this is me’ from the greatest showman girls because you are all fabulous 😘😘😘💕💕💕✨✨✨✨Shi xx
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Re: January chemo starters ?

Hi Shocked and Rosie,

So sorry that you are both feeling low.  We have all been through so much but hopefully as our hair grows back we will feel more like our old selves again.  Love and hugs to both of you.

Love those puppies Rosie.

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Re: January chemo starters ?

Shocked and Rosie with you on that roller coaster seem to be bursting into tears all the time ! And hot flushes 24/7 had zoladex this week and starting tamoxifen wednesday but can't see how I can get anymore tears or flushes in ! So surely can only plateau and get better. Big hugs to you both and all those feeling crappy xx keep swimming xx
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Re: January chemo starters ?

Hi Rosie and Shocked, just wanted to let you know that I'm thinking of you both and to reiterate what Michelle has said xx

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Re: January chemo starters ?

Hi Rosie and Shocked i just wanted to send you both my love, I feel for you both, this is such a rollercoaster of emotion with so much cr@p along the way. I hope you both feel better today xx
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Re: January chemo starters ?

Shocked your post just set me off...I lay there last night with my mans hair, fake boobs, no nipples and hot flush and couldn’t have felt less like a woman if I tried. On a good note I took with dread my first Tamoxifen and actually woke up feeling better than usual! So feeling a little more positive today...sending you huge hugs xxx

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Re: January chemo starters ?

Aww Rosie its emotional seeing the end of all this so tears is normal plus I think its quite scary - big hugs and that pic of your fur babies is so cute.

I've just been in floods of tears because I'm fed up of feeling broken my skin is awful and I never had any problems with it before chemo - plus I'm so shattered because of the stupid amount of hot flushes I'm getting so burst into tears in a hormonal mess,

Aliand - sorry to hear you have to wait that long to find out whats going on xx
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Re: January chemo starters ?

So after all the horror of the chemo not working and you might need more or you might need Zoladex and other drugs I can’t pronounce I am back to Tamoxifen! Onco says she thought about it and it offers the best protection for my peri menopausal state...so now I’m with you Shocked apart from Radiotherapy and Tamoxifen that’s me done until 14th December 2018...which is strangely exactly 1 year since I was diagnosed. As I left I wanted to burst into tears and I have no idea why...x

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Re: January chemo starters ?

Hugs back to you Dealdoh.😘
Ali and Amy, sorry you both have to wait for results, it's horrible waiting. Shocked, that sounds really sore, hope the new creams clear it up soon xx
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Re: January chemo starters ?

Rosie, lovely pic x. Just feel the need to give my fellow swimmers a big hug xxx

Shi Community Champion
Community Champion

Re: January chemo starters ?

Ali and my darling, please speak to your bc nurse, they are there to support you and discuss concerns with you and there is also the BCCF helpline in here that can support you too, keep 💪💪💪💪you’ve got this 🥊🥊🥊🥊. Amy you too beautiful, you’ve given this a 🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️🤸‍♀️, keep 💪💪💪💪💪ladies just a reminder about the udderly cream with urea from amazon, it’ll really help with skin, lots of us still using it on hands and feet. Rosie h, beautiful photo thank you so much, give them lots of mmmmwwwwwaaaaahhhh from Auntie Shi 😘😘😘😘💕💕✨✨✨Shi xx
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Re: January chemo starters ?

Starfire...I had my BT which showed I am back to pre menopause, I see the onco tomorrow for my treatment plan.

Shocked saw the pics of your skin on WhatsApp, it looks so sore. My left over chemo issue is dodgy bowels. Skin seems ok but I did get a really sore heal after 7 hours of surgery. Have to moisturise like crazy nowadays though.

Aliand, no point saying don’t worry. Remember my chemo had a rubbish response but the Onco was far less concerned than me (or so she appeared to be) You will be so flipping relieved when you get to surgery. 

This thing just goes on and on...

 

Shi I forgot this the other day

FBEDA095-8736-446D-ABEF-A36A4185D436.jpeg

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Re: January chemo starters ?

Wow starfire - I am having a hot flush every half hour at the moment which is not at all pleasant and is not helping with sleeping so I’m shattered but was told to expect the flushes on tamoxifen so it’s even more confusing as it’s a sign of the menopause as well. I’m not seeing the consultant for 6 months now so may ask my go to check my bloods - my gp is a little concerned they’ve done no blood tests since I had my last chemo round so wants to do a full blood count next week anyway so I may as well ask if they could check my hormones as well.  

 

Not happy to report I’m  experiencing some new little joys thanks to chemo - my skin has been thinning throughout and my hands have been the worst but I never thought too much about the soles of my feet - so now I can’t walk on my heels the skin has all split on the bottom of my feet - now have even more creams prescribed😖😖😖There’s me thinking great I can start getting a bit more healthy after not moving far from the sofa for 6 months now I can’t even put my feet on the floor and I’m not flexible enough for walking on my hands 😆

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Re: January chemo starters ?

I know that feeling Aliand!  I've got a 2 week wait now till I get the results of my PET scan 😕
And I want to tell you not to worry about the lump but we know that's easier said than done, especially after what we've already been through 💪 xxx 

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Re: January chemo starters ?

aliand so sorry to hear about your long wait.like you say you just want to get it out now very frustrating. Tell you what though having a mastectomy was easier than chemo so youve done the hard part. I'm sure you will make a good recovery and they will get all that nasty cancer out and you will feel so much better before long ! Xx
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Re: January chemo starters ?

So everyone we’ve got a whats app group set up for arranging our meet up. Fel I know you can’t use what’s app but I’ll be pm you when we look at dates so you won’t get left out 😘😘
Is there anyone else out there that wants to join us ? CT I’ve sent you a pm
Just checking before we look at dates and places.

Saw my Breast surgeon yesterday prior to SNB for the first tine she could feel a lump in my axilla.
The last USS showed no evidence of a lump but that was just after I started t so now I’m worried that the t hasn’t killed off the cancer and it’s growing again ! 2 weeks to biopsy 5 weeks til mastectomy for the first time I’m anxious about getting rid of my breast and that tumour asap. ! I suppose it could be something else she’s feeling but I’m not going to know that for about 4 weeks.
The waiting is the hardest but is t it
Xx
Member

Re: January chemo starters ?

Hi Starfire, I just wanted to say, I was in your position last September, being pre menopausal (age 45) before treatment but post menopausal as shown by blood test and symptoms after it. So I started on anastrazole and all was well until around April, when after 16 months without a period and regular blood tests monitoring my oestrogen, I have reverted to my pre menopausal state! I started a post last September, in the Targeted Therapies section titled chemotherapy induced menopause if you want more details! I don't want to scare you, or give you any doubts, but although reverting to a pre menopausal state in your 40s after chemo is rare, it does happen so be on the lookout for changes in your symptoms!
Shi Community Champion
Community Champion

Re: January chemo starters ?

Rosie h, sorry your rheumatologist app was not as good as the rest of the support and treatment you’ve had from your trust, could you ask to be seen by another one? Or does your trust just have the one? Fel, get some air to your skin too a flimsy kaftan thing for wearing in the house works well 👍starfire, glad you are doing ok, you’ve done another quick swim out to the raft and back my the sounds of it, did you just want another look at mr hardy in his shorts? Glad you are doing well 👍dealdoh, sorry to hear your nails are going, they will grow back quit quick it’s just a nuisance, but just think, no more chemo, that’s always guaranteed to make you 😁😁😁😁keep looking forward to hair, eyebrows and eyelashes coming back, get the mascara on even if it’s a bit stumpy it trains your lashes to curl again rather than glowing straight out ❤️❤️❤️💕💕💕✨✨✨Shi xx
Member

Re: January chemo starters ?

Hello ladies.

I’ll start off with my news today. As you may remember I went on Tamoxifen about three weeks after my last chemo and didn’t get on with it. It made my Hands feel numb, I felt light headed and dizzy and plan right odd. I stopped taking it after 3 weeks with my rads consultants Blessing until after rads was to finish and giving the side effects a chance to disappear if the Tamoxifen was the culprit.
Well the symptoms have improved.
Last week with my consultant I requested a menopause blood test to check the status of my menopause just in case I was suitable to have the Zolodex injections and avoid going back on the Tamoxifen. My consultant said HIGHLY UNLIKELY as when you had your prechemo menopausal status blood test in February you were still WAY OFF THE MENOPAUSE.

Today I had the results of the blood test and believe it or not I HAVE HAD THE MENOPAUSE .... the chemo has not just brought it on but it has finished it off and I am right out the other side!!!!!!

So now I can have Anatrozole and no need for Injections. I cannot believe it!!!!!!!

And in typical Starfire style the Macrogol that I am allergic too and carry an epi pen for (allergy following chemo) coats Anatrozole tablets!!!!!!!! OMG

On reflection though IF I had not felt terrible on the TAMOXIFEN and took myself off them potentially I would have been on them for no benefit and totally unprotected and wouldn’t have known that I was post menopausal.

I therefore suggest you ask for this blood test to make sure of your hormone status.I have been having about 10 hot flashes a day and I have vaginal atrophy which are as you know menopausal symptoms.


Anyway...,.Goodness me, there has been a lot going on. I’ve just been trying to catch up. Well Done Aliand..... AT LAST! Amy... my nails have ridges in them and the cuticles went darker after Abraxane.

I had my 10th Rads today out of 21 so I am feeling tired. The tiredness for me is straight afterwards and I was on the table for over an hour today as my MD is causing them
Issues lining me up and maintaining the correct position.

How is everyone’s hair coming along. At two months since finishing chemo I have about half an inch of white hair on top and my eyelashes and eyebrows are nearly all back.

I will PM you Aliand my number.
Lots of love to all xxx
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Re: January chemo starters ?

I think everyone seems to get sore from rads. But 6 seems quite early. I wonder if it is ? Good job you’ve a rest day. Enjoy your time off
What a co-incidence to share a taxi with someone your connected with !
Xx
Member

Re: January chemo starters ?

Hi Ladies,

Had 6th rad today feeling ok but my scar is a bit sore.  Using lots Aloe Vera to cool things down.

Free day tomorrow going to visit family which means another 2 hour journey but it will be nice to see everyone again.

Shared my taxi today which was great having someone else to chat to other than the driver.  Turns out her husband knows mine and they have played together in the same band.

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Re: January chemo starters ?

Amy, all the best for your PET scan tomorrow xx

 

 

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Re: January chemo starters ?

Hi Shi..rheumatologist was an poor example of the NHS, after so many brilliant doctors she was shocking.

Too many reasons to mention but she did agree to give me the injection I wanted which has always worked well although she wanted to start me on immunosuppressant medication...I politely declined pointing out I felt I’d been poisoned enough for 1 year.

Amy how’d the scan go? Got everything crossed for you 

Fel how’s it going with you? Xxx

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Re: January chemo starters ?

Good luck with the pet scan Amyxx
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Re: January chemo starters ?

You’ll be glad to get that done and dusted then Amy and hope all goes well. 

Yeah, I will be glad to finish the rads.  The round trip is not particularly long, only 40 mile round trip (not like Fel’s marathon journey) and the staff have been great and super efficient - it’s just a bit tedious.  I know I shouldn’t complain but ........... he’ll, why not!  😖🤪

Lost nail number 3 at the weekend.  I’m pretty sure the rest will follow.  It is really quite difficult not having nails.  Oooo, I’m a moaning minney today😏

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Re: January chemo starters ?

I am post surgery.  When they did surgery they could only take 9 lymph nodes otherwise may have damaged a major vessel, and 8 of the 9 had cancer.  So they are worried there might still be some remaining cancer cells and that is why I'm having the Pertuzumab.  If the PET scan shows nothing then I'll be able to stop that and get picc line removed.  I'll still be having Herceptin but that can be given as an injection ☺

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Re: January chemo starters ?

Why a pet scan amy ? Are you ore or post surgery ?
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Re: January chemo starters ?

Nice one Dealdoh, I'm sure you'll be glad to have that done and not have to go to the hospital everyday!

 

I've got a PET scan tomorrow, get results on the 28th then we'll know what's what.  Hopefully it's all clear so I can get my picc line out! In the meantime I'm still getting over the effects of chemo but working 3 - 4 hrs everyday 👍

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Re: January chemo starters ?

10th session of radiotherapy and apart from slight discolouration of skin round treated area, all well.  How is everyone else doing?

Shi Community Champion
Community Champion

Re: January chemo starters ?

Rosie h, how did your appointment with rheumatologist go darling? 😘😘photos of puppies please, i love that puppy smell they have if that doesn’t sound too odd, there is just that smell and it’s beautiful ❤️Amy thanks again for reminder about knitted knickers 👍👍they can do partial ones too for anyone who’s not had mastectomy. Girls on 😎😎🥓🥓🥓hope you are getting in ok and mr Hollywood ladies keep focused the st tropez beach cabanas are being decorated ready for you all 💃🏻💃🏻🕺🕺💕💕💕✨✨✨Shi xx
Kip Community Champion
Community Champion

Re: January chemo starters ?

Sorry just stumbled across this post for knitted knockers I have two and they are brill especially as you can add or take away the stuffing to suit. My mum downloaded the pattern from their website and makes me them. I have yet to get my proper boob but probably use KKs as love them
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Re: January chemo starters ?

Amy that’s awesome well done...and your knitted knockers are brilliant 😀🏃🏻‍♀️

Aliand it was Zoladex you had I think, I feel like that all the time at the moment. Joints are so so sore. I do have some weird autoimmune palendromic rheumatism thing which went away with chemo and no immune system but is back with a vengeance but I’m sure some of it is post chemo and dodgy ovaries. Seeing the rheumatologist tomorrow see if I can score a steroid injection.

i wondered the same about removing ovaries. I’m going to ask the Onco. Not sure if anyone else had a Lobular tumour but apparently they can spread to the ovaries too...

Anyway back to coo over the new puppies, so nice to have something so lovely and positive xx

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Re: January chemo starters ?

Well done Amy. I was thinking or having a go this week. Probably more walking but got to start somewhere.
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Re: January chemo starters ?

First run (it was more of a walk/run) in about 2 months this morning!  Slowly getting back to normal and feeling good 😊

Shi Community Champion
Community Champion

Re: January chemo starters ?

Amy, brilliant, I’d forgotten about those, sorry I didn’t mention it ladies, Amy your post reminded me and I’ve ordered one for swimming 👍👍thank you. Shocked thanks for letting me know starfire doing ok 👍I hope she gets on better with 😎😎😎🥓🥓🥓 Aliand it might be worth you having word with your onc about having ovaries out, when I had to have brca test, they told me if I needed to have them out it was keyhole surgery to do it, so if it’s on your mind, speak to your onc my darling 😘😘love to you all 💕💕✨✨Shi xx
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Re: January chemo starters ?

I’ve heard of them Amy but as I’m having an immediate recon I didn’t order any. If all goes wrong I will though. They look great, funny but great if you get me.

I’ve been really tired today and very achy I’m wondering if it’s that injection I had a week ago. Already forgotten what it’s called I do wish she had given me some written info.
Also if the sim is to shut my ovaries down forever, why not remove my ovaries ? As I understand it as a bc survivor we are at increased risk of ovarian ca so would it not be better to take them out ?? Anyone know ?
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Re: January chemo starters ?

Amy they look fab - great idea yet half fillet is heavy enough 

 

Shi - some of the other ladies mentioned starfire has been posting on the rads thread. 

Highlighted
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Re: January chemo starters ?

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Just wondering if you've all heard of Knitted Knockers (I know, lol right?!)?  My bcn suggested them when I mentioned that I found my chicken fillet quite heavy.  They are a charity so knit them for free, you can order from their website, search knitted knockers UK.  Mine came today so haven't trialled them yet, the pink one is for swimming 👍🏊‍♀️🐟

 

 

Shi Community Champion
Community Champion

Re: January chemo starters ?

Fel sorry to hear you had a wasted journey today, rads machines do have their moments from time to time, they did in my unit and most of us ended up with a days delay, so it can happen, but it’s the ground hog day feeling of it all that makes you think you’ve gone ga ga, I’m sorry ladies but it really does, like you need to feel anymore ga ga than we do already 😁😁has anyone heard from starfire? I hope she’s ok ❤️❤️❤️💕💕✨✨Shi xx
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Re: January chemo starters ?

Oh no Fel such a long way for nothing Smiley Sad

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Re: January chemo starters ?

That sucks Fel x

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Re: January chemo starters ?

Aww fel that’s a long way to go for nothing ! I bet you were well peed off 😟
Aliand it’s my 3 Rd herceptin today xx
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Re: January chemo starters ?

Hi Ladies,

Went down to Exeter again today for my 4th treatment and all 3 machines were down so I was sent home.

Really frustrating after such a long journey and I now have an appointment on one of my free days at 7pm in the evening.  Luckily the taxi drivers who take me are all great and very patient.  Hopefully machines will be fixed for my trip tomorrow.

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Re: January chemo starters ?

My taste has come back at last although I had to persevere with the red wine and chocolate! 

I drive to my rads, about 25 minutes each way and haven’t had any problems. Feel bad for you tho Fel cos that is a bit of a trek to do on a daily basis.  Eight down, seven to go 🙂

Shi Community Champion
Community Champion

Re: January chemo starters ?

Aliand 😂🤣😂🤣😂no I’d not been on the pop 😂🤣😂🤣😂Amy, mai7 found fever tree waters helped her, you could pm her to see which ones she had to help with taste ❤️❤️She’s the angel who took me under her wing when I started chemo ❤️❤️Her and ladybowler ❤️❤️Hope that helps 💕💕✨✨Shi xx
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Re: January chemo starters ?

Rosie yes. SNB on 28th then mastectomy and reconstruction on 19th July. I can’t wait to get it over and done with now.
Taste didn’t come back properly between my 3&4 T so I’m guessing it’s going to be at least a couple more weeks.

Fel I bet that travelling is exhausting. I’m hoping to drive to mine as it’s only 20 min by car. If I get too tired it’s 2 buses and 1 hr 11 min yak !

Jamsey did you start the herceptin ?

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Re: January chemo starters ?

Aliand is that your SNB then surgery?

My taste came back but I can’t drink coffee anymore without feeling sick and my bowels are still a bit sensitive!!! 

Fel that’s a huge journey for your Rads...xxx

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Re: January chemo starters ?

I'm glad I'm not the only one still having taste problems, Aliand. It makes me nauseous still and still have to carry my bag of sweets, mints and sugar free gum!
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Re: January chemo starters ?

I think Shi’s been on the sangria !

Oh no Fel no smartphone ! Well the group is just to make arrangements for the meet up so I’ll pm you any suggestions and make sure you are included and that goes for anyone else.
I think we should stick to here for our ‘home’ then we’ve got the support of Shi and the others who’ve been popping by.

3 weeks til my SNB so freedom for a bit got me. Still not got the taste back yet though.