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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

Hi B4

Looks like you've got plenty of cream suggestions, but you could include Diprobase, a non-perfumed aqueous cream which can be prescribed.

xx

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Re: December 2019 Chemo Starters

Hi Lynne

Hopefully the cream will do the trick. Another side effect...just what you need!

xx

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Re: December 2019 Chemo Starters

Hi all, the radiologist mentioned to me that I shouldn’t have any deodorant with aluminium in it as it can cause a reaction. She mentioned pitrok or bionsen (?) as alternatives. She also said don’t put your moisturising cream in the fridge (which is different to what you were told Shi, right?)  just pat dry the area (not rub) and don’t use highly fragranced/chemical-laden gels/soaps when washing the area. 
She said soreness can come weeks after so to be very gentle with the skin there. 

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Re: December 2019 Chemo Starters

Just another quick think, I just washed boob in warm water before going to rads so there was no cream or anything on it, don’t think they want you having anything on it for rads, slapped it in straight after though before getting dressed. Wear leggings and a loose top over, better for getting up on the rads bed and having your legs up while they position you πŸ‘hope that helps πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Hi b4 people have used different things during rads, I think most try a few and go with what works for them, some that I know have been used e45, aveno, moo goo, I used dr organics aloe Vera gel with tea tree oil and arnica and also dr organics aloe Vera gel with cucumber, witch hazel and calendula from H&M, I kept one in my handbag and one in the fridge, and kept slapping on for about 6-8 weeks after rads was done and keep drinking the water, sleep when your body tells you to and pace yourself πŸ‘I thought of it like being on a Sunbed on the beach and named the machine boob zapper or something so it was like being pleased to see a friend every day 😁 because it is your friend πŸ‘ always flag up any concerns to your team about your skin during rads πŸ‘ i was lucky rads were doddle after chemo 😁 hope it’s the same for all of you too πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Hi Lady34

 

A misdiagnosis like that is so rare, I really wouldn't worry about it. Don't  let your mind play games with you.

 

Take care xxx

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Re: December 2019 Chemo Starters

Sorry Shi 

I wasn’t v clear. I have been told that during radiotherapy one has to keep skin moisturised. Hence asked, but I think any emulsifier like E45 or aqueous cream/ pint should b ok (ointment better actually).

 

thats what I was asking for.

 

b4

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Re: December 2019 Chemo Starters

Evening lovelies πŸ˜€ 

sending you all big hugs I can’t keep up with everything going on but glad the knee swelling has been seen. I’m seeing onco tomorrow. I read an article of a woman who had a mastectomy then found out she was misdiagnosed and hadn’t had cancer. 

Ive been very compliant I never questioned my diagnosis or asked for a second opinion. Why not? Because I was blown away by the results

 

just thinking. Just saying. Only now have I allowed myself to think these thoughts 

 

πŸ™πŸ½πŸ€πŸ’•πŸ€

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Re: December 2019 Chemo Starters

Hi @Madcatlady, the nurse thinks it’s probably just a se of either the Docetaxel or Herceptin.  I’m to continue with the Voltorol cream and keep any eye on it, if it gets any worse then call the surgery.

 

Thanks xx

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Re: December 2019 Chemo Starters

Hi Lynne

How did you get on today about your knee? 

xx

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Re: December 2019 Chemo Starters

Hi b4, sorry if I’m being dim, cream for? πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Morning all - I woke up during Sat/Sun night with a real ache in my left knee. It feels as though it’s 3 times it’s normal size and is painful to bend or stand on.  Visually though there is no swelling.  Applied Voltoral gel 3/4 times yesterday and it is a bit better this morning.  Just wondering if anyone had had anything similar, could it be a latent se to Docetaxel?

 

I’m seeing the chemo nurse at 2pm today for my Herceptin injection, so will mention it then anyway.

 

 Thanks, Lynne x 

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Re: December 2019 Chemo Starters

Thanks B4- yes chemo finished last Thursday. My fingertips are a little numb/ tingling but not too bad x

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Re: December 2019 Chemo Starters

Aww, thanks B4! Loads of love and best wishes to you too.

I'm not that techy either, so I'm impressed I managed to PM rizzer about the WhstsApp group. If I can do it...!!

xx

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Re: December 2019 Chemo Starters

Hi Shi

is there a particular cream which I recommend or any emollient?

 

 Thanks 

B4

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Re: December 2019 Chemo Starters

Rizzer,

how do I pm you my no.? I’m not that tech savvy.

 

B4

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Re: December 2019 Chemo Starters

Hi Fiona

 

your chemo must have finished last Thursday πŸ‘πŸ‘πŸ‘

Please take care, my tingling of finger tips and toes is still there (finished chemo 2 weeks ago). They say it can take 3/12. I also had a chat with my boss about return back to work in 2 months (from home due to CV). It will be nice to start living again...

 

love and best wishes

 

B4

 

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Re: December 2019 Chemo Starters

Hey Rizzer

i will send you my tel no as well, I would like to b in the WhatsApp group as well!

thanks 

B4

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Re: December 2019 Chemo Starters

Dear Adele- my Welsh friend

 

we are all getting to the end of our treatment journey, we have had quite a vulnerable time.... only we can understand that. I wish you all the very best and sending loads of hugs and love.

😘😘

B4

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Re: December 2019 Chemo Starters

Dear Rizzer

 

i will take the opportunity to thank you and all others who were there in very vulnerable times! I’m so glad that I had support of this group.

😍😘πŸ₯°

we do need to plan and meet up once this CV phase goes away (?)

 

loads of love and best wishes

B4

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Re: December 2019 Chemo Starters

Loads of love to you Madcatlady, I’m sure all lovely ladies in this forum will say a big thanks to u as well, as you were always there whenever v needed u! 😘😍πŸ₯°

 

B4

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Re: December 2019 Chemo Starters

Hi lovely ladies 

I was talking to my neighbour earlier - he had a hip replacement recently, but is in his fifties too - and we sounded like a couple of real old timers, comparing our ailments and moaning about having done too much (in his case, walking, in mine gardening).

He always makes me laugh as he has a very dry sense of humour, but both being a bit deaf, and having to stand so far apart, added something a bit surreal to the proceedings. I'm sure the other neighbours enjoyed our chat too! He didn't even mind me saying how nice it was to see someone with even less hair than me (he he!) πŸ™ˆ

On a serious note, I am just so thankful for all the support I've received, from family, friends and neighbours, and especially from you lovely ladies, as you just 'get' what this all means. Some of us are further through the process, but knowing we have each other to talk to has really helped me and will continue to do so.

Thank you πŸ€— πŸ’•

xx

 

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Re: December 2019 Chemo Starters

It's hard isn't it? It's so sad and also it's our own worst fear just now.

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Re: December 2019 Chemo Starters

Do you know, I thought of you frenchie and the conversation with the psychologist and that lady you overheard the other week...

Got to pray the alternative treatment works for her. There but for the grace of god etc X

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Re: December 2019 Chemo Starters

Oh Rizzer, that is so sad. The lovely lady I see each week at chemo, who is having chemo for secondary BC told me last week the chemo she'd been having wasn't working. They're trying her on something different now but my heart just breaks for her, it really does.

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Re: December 2019 Chemo Starters

Hi all, had my CT scan to get measurements etc for radiotherapy starting a week on Monday. Was strange to be back in the scanner....  At least I could get my arms above my head and I could hold my breath for the requisite amount of time, so all good on that front.

Very sadly, as I popped in to the loo to wash my hands, I heard a lady outside walking past absolutely howling crying. Poor poor woman, I can only imagine she got the worst of news πŸ˜”
Just wanted to echo what Livers said, and say how grateful I am to you all for the support you’ve given me over the last few months Xxx

 

 

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Re: December 2019 Chemo Starters

Is oct17 gang kept our chemo thread as our home thread as we all pinged off for ops or rads and the threads for them our chemo thread was where we kept in touch with each other to make sure everyone was getting through next treatments ok. πŸ‘­ β€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Hi @Lady34,  I have had op, finished chemo and start radio on 24/4 (not sure yet if it will be for 5 or 15 days!), but am also having 3 weekly injections of Herceptin which won’t finish until Feb next year!  So, still have a long way to go.  

 

I don’t think any of us will ever be β€œfinished” as even when treatment stops there will still be yearly, bi-yearly and 5 year checks and the ever present worry of β€œwill it come back?”.  I do feel once you get cancer it’s always there by your side for the rest of your life and you have to find your own way of coping and living with it.  This group has been amazing in allowing everyone to feel free to vent without criticism and I would like to thank each and everyone of you for that.

 

Thank you all.

 

Lynne πŸ˜˜πŸ’•

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Re: December 2019 Chemo Starters

Hey Lady34

I'm with you - neoadjuvant chemo awaiting surgery

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Re: December 2019 Chemo Starters

I've had a bit of a strange journey involving 3 hospitals i am triple negative so had mastectomy first ( due to size 3.5 cm and location) moved to a different hospital for 6 chemo sessions (ect & Docetaxel)  and am hopefully starting 5 sessions of radio on 30th as tumour close to chest wall ( although I did have clear margins)  they will do bone infusions at some point just to give extra protection  - so I'm nearly at the end of my main treatment - should be delighted but I think covid making me nervous of everything! Also my father in law very poorly ( not covid - he has vascular dementia)  and it's tough not being able to help him πŸ˜” but feel blessed that my treatment is progressing 😊

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Re: December 2019 Chemo Starters

Thank you rizzer I know you are just keeping the group together in some shape or form. I will message you my number much appreciated. Sorry I’m a bit vague at the moment but will post after my onco appointment when I’ll get more clarity.

 

Thanks frenchie77 good to know who’ll be around for the coming months. 

 

Xxx

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Re: December 2019 Chemo Starters

Don't worry everyone, I've got ages to go yet! Actually started chemo at the beginning of January and like you Lady34, I've got surgery  after chemo. I've still got 6 doses of taxol first. So I'll be around for a long while yet 🀣

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Re: December 2019 Chemo Starters

Hey Lady34,

 

Im so sorry. I hope my setting up the WhatsApp group didn’t send the message that I thought everyone’s journey had finished. I really didn’t want to do that. I know mine hasn’t.

 

It was just incase people fell away from chatting as regularly on here about Chemo (as our treatment diverge away from chemo) that there would be some way we had contact. It was a means of ensuring we had each other - certainly not intended to make anyone feel left behind. I’m so sorry that my message made you feel like that.  I should have thought more about the impact it might have. I’ve had 2 ops, but still got more Chemo then radiotherapy and then a variety of endocrine treatments - so I’m not done with this either.

Sending lots of love Lady34 Xxx 

 

 

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Re: December 2019 Chemo Starters

Hi Lady34

 

It all depends on receptors. As I understand it, Her2 receptor positive cancers have neo adjuvant (pre surgery) chemo then surgery. I think a lot of us must be Her2 negative and therefore have had surgery, then adjuvant chem. Radiotherapy or not depends on how big and/ or invasive the cancer is (I think) and possibly the type of cancer. It's so complex, not just a case of having breast cancer (type, size, invasive/ non invasive, spread, hormone receptive or not).

 

I hope you manage to get your surgery quickly after chemo. Please do join the WhatsApp group if you would like to, even though we are at slightly different stages x

 

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Re: December 2019 Chemo Starters

Feeling a bit lost here. I’m not at the stage anyone else is at! Or am I?

Ive had my 6  chemos but am at the beginning not had the Mastectomy. Meeting with onco surgeon  next Tuesday who’ll have the results of last week’s MRI. The initial plan was chemo then mastectomy no discussion of how much radiotherapy or anything else. 

 

Surely this will all take take more than a few weeks. 

 

Hugs to all approaching or just over the last hurdle πŸ™πŸ½πŸ€πŸ™πŸ½

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Re: December 2019 Chemo Starters

πŸ‘ great rizzer πŸ‘ is Oct17 gang speak daily and before covid-19 meet up as much as we can πŸ‘ we did the Chatsworth 10 mile breast cancer care walk together last year too πŸ‘ it’s a bond like no other when you’ve travelled this journey together β€οΈπŸ‘­πŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Hiya, well we’re up and running - so if anyone wants to add themselves, just PM me your name and mobile number and I’ll add you in X 

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Re: December 2019 Chemo Starters

Click on Rizzer's name at the top of her post and it gives you the option to message x

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Re: December 2019 Chemo Starters

That would be great 😊 how do we private message? 

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Re: December 2019 Chemo Starters

Hi Rizzer

 

I think that's a great idea. I would also presume that if people haven't been involved with the discussions they would be unlikely to want to be in a WhatsApp group. Make sure everyone gives you their tag with their number! X

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Re: December 2019 Chemo Starters

Hi all,

 

I’m just wondering if anyone thought it would be a nice thing to set up a private WhatsApp group for those of us who wish to stay in touch after active treatment is over?

Perhaps to see if a meet up possible down the line when we’re able. Just thinking it’s unlikely we’ll all be regularly checking in here in a few weeks time...

 

Anyway, let me know what you think and i can set it up if it’s a go-er.

 

Would need people to Private Message me their mobile number. Obviously, please remember not to post it in the public forum. 

If it’s ok with everyone, I wouldn’t be adding anyone who hasn’t already participated to date in the forum. 

Any thoughts?

 

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Re: December 2019 Chemo Starters

Thsnks Madcatlady

Great sleep, temazepam assisted! Hope you slept well too. 

Maybe by the time lockdown/ shielding is over I will have some hair. I currently have a Yoda style white fuzz πŸ˜‚πŸ˜‚πŸ˜‚ just need the ears to match!

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Re: December 2019 Chemo Starters

Thanks rizzer! 

Just one more week...then you can ring that chemo bell! 

I think I overdid it a bit today, so will be sat with my book tomorrow. It's just too tempting to get outside when it's the only place to go.

I love that description - 'I'm Mrs Zero Boob' !!! 🀣 

Sending lots of love πŸ’œ

xx

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Re: December 2019 Chemo Starters

Woo hoo, MrsS1968! Well done πŸ›Ž

At least you've got a break before radiotherapy, although it's a shame you have to have 15 and not 5.

I've got antibiotics for a week, so hopefully that will sort things. Thanks for clarifying about the leg size!

Let's hope the side effects aren't too bad, and you can just enjoy no more weekly trips to hospital.

Hope you manage some sleep.

xx

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Re: December 2019 Chemo Starters

πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ‘πŸ‘ nearly there πŸ‘πŸ‘ on rads, keep up the drinking water and have a nap when your body tells you to, get your kaftans out to waft around in to get air to skin and slap on your cream πŸ‘πŸ‘ it’s lovely and cool if you can keep it in the fridge ❀️ Your team will keep eye on your skin, but and concerns raise it with them so they can have a look to make sure all ok πŸ‘β€οΈπŸ’•πŸ’•βœ¨βœ¨Shi xx

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Re: December 2019 Chemo Starters

Had my last chemo 2nd April - 5 sessions of radiotherapy due to start 30th April had Mastectomy begining of November - then I'm done! As TNBC I won't be on Tamoxifen or similar - they do plan some bone infusions later but that seems fine 😊🀞 I'd planned a break away between chemo and radio - that's not happening now πŸ€” nearly there ladies 😘

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Re: December 2019 Chemo Starters

Rizzer

 

I'm sure you will totally ace it. Only 5 and how lovely to get it all finished πŸ‘πŸ‘πŸ‘

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Re: December 2019 Chemo Starters

Shame you’ve got the full 15..but then I’m Mrs zero boob.... so swings and roundabouts right?! 😁 🀣 πŸ˜‰. Yeah 4 days after for RT is quick isn’t it. I’m imagining I’ll be on my knees after, but so so grateful πŸ™. Chuffed you’ve finished MrsS 😘

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Re: December 2019 Chemo Starters

Sorry Rizzer- struggling to keep up with everyone. They are starting your radiotherapy quickly, with us they wait 4-6 weeks to allow you to recover from chemo. I thought I might get away with 5 radiotherapy treatments but they have to give 15 at the lower dose through my reconstruction. Waiting for a date x

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Re: December 2019 Chemo Starters

Woohoo!!!! MrsS! You flipping well did it ❀️Long may the demob-happy feeling continue! 🍹 πŸ·πŸΎπŸ§‰πŸ» πŸ’ƒ
Not got my last till next Thursday (I’m on 2 weekly cycle) 

Radiotherapy starts for 5 days the following Monday! 

So pleased to hear no DVT madcatlady...hope the cellulitis doesn’t keep you from making the most of that garden for too long 🀞. Sending loads of love πŸ’•