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Support group for secondary BC hampshire/Winchester?

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Re: Support group for secondary BC hampshire/Winchester?

I have found this little group really encouraging, so pleased we have managed to keep going with Zoom meetings, although not as good as in person, it's been a little corner of sanity for me. With all the face to face support groups and complimentary treatments being cancelled it has become even more important.

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Community Champion

Re: Support group for secondary BC hampshire/Winchester?

Hi Carole

Thank you for the information. Unfortunately swanie  is no longer with us however our little group has continued to meet regularly, pre-COVID and online since. I’m sure any of us who want to have additional support and chats with other secondaryBC ladies will read your message and be in touch. Hope you are all keeping well and safe.

Nicky

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Re: Support group for secondary BC hampshire/Winchester?

Hi @swanie, there is the BCN Frimley group , not in person at the moment.  Previously held at the Frimley Baptist Church rooms and we are awaiting to hear what is next.  We would be delighted if you wanted to join our unofficial, not facilitated on-line video call each fortnight at 11 am on Mondays.  Just e-mail me on carolherring246@yahoo.co.uk for the details.  Thanks, Carol

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Re: Support group for secondary BC hampshire/Winchester?

Hi Judy & Elizabeth

Just PM'd you.

Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi Judy

Can you Private Message me your email address & mobile number please? Then I can set up Zoom & WhatsApp groups & we can meet up.

Thanks, Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies,

Would be great to have a zoom meeting. I’ll log in daily to see if the details have been posted here. Was lovely to see you briefly Julia in January and see the photo of your beautiful granddaughter. I agree Ellie is wonderful, I do miss her monthly tea and cake chats. So pleased you have had surgery and rads. 

Look forward to seeing you all on zoom all being well. 

Love Judy xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

And thank you Helen for flagging this up to me, it rarely appears on the ‘Latest posts’ bit so I hadn’t seen any recent activity and hadn’t checked the thread as I assumed there was no planned meet-up!
Anyway I am up for a zoom call if we can get one organised. I will check in here more often to find out details of when it will be, hope you don’t mind organising this Helen. You have my details so please use them.

Julia, so sorry you found out you had a brain met but glad you were able to get it sorted ASAP, let’s hope there’s a long period of stability. I had heard about the drug you mentioned but only this week when it was mentioned on another post. Lapatinib also passed over the blood/brain barrier but I’ve no idea if it’s still used, or more importantly NICE approved.

Carinne, I hope any scans show that tamoxifen is still limiting the amount of progression and you can stay on it for a while longer, or at least until this coronavirus crisis passes its immediate danger point.

Judy, good to hear your treatment is still working, as is yours Helen.

Well, I’m on carboplatin having had a second opinion at the Marsden to discuss it, just before the lockdown started. It’s been a bit tough on blood counts so a few delays but overall not got too many side effects. The main one for me is stomach cramps on and off for a week after the infusion, nothing terrible, just seems like a lot of wind! I’m due a CT next week to see how it’s working after 3 cycles. Our chemo unit has moved to a private hospital in Winchester and the CTs are being done at another private hospital which is at the edge of our village so all treatments etc are going ahead in more safe environments than when I started chemo as it was still being done at the general hospital.

Lets hope we can all get to have a virtual meeting with tea/coffee and a cake compulsory (but not virtual!)

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hello ladies 👋

sorry it’s been a while since I caught up on here. Carine I’m sorry to hear you’ve had some progression. Hope your appt on 6th May was helpful. Judy what a disappointment it must’ve of been for you all with the wedding being cancelled, let’s hope it’s not long before it can all be rebooked. My eldest son got engaged on Valentine’s Day, she asked him, it being a Leap Year, he said “yes” Hopefully a wedding next year 😀.

Well this year has been very eventful for me, I asked for my scan to be done in January and to include a brain scan as I was feeling very odd and wobbly and sight peripherally in right eye was getting bad. The results were what I suspected that I had a brain met. Lucky for me it was a single one and in my occipital lobe so hence the vision and wobbles etc. So on 2nd March I went into Wessex Neurology Centre and had brain surgery to remove it. I feel so fortunate they could do this.  In April I had five sessions of stereotactic radiotherapy also at Southampton. Most of the brain tumour symptoms went very quickly after surgery and then I realised how long I’d been “going downhill” but fairly gradually since September so until things got very bad end of December I didn’t twig (only had a couple of headaches in Sept/Oct).  My sight in right eye is still affected and I’ve been told it prob won’t get any better now but I’m ok with that as I’m still here 🙏🏼.
After radiotherapy I felt pretty rough, all symptoms came back, but was told by Neuros this was normal. Anyway now at last I’m feeling much, much better again.... hurrah 😀  

I will get three monthly brain scans now. I wish it was policy that all stage four ladies got a brain scan. My other mets were all stable so I’m still on Tras and Pert. Although I learnt that the molecules in these drugs are too big to pass the blood brain divide, hence getting a brain met. Kadcyla can get through a little better but my Onc said he didn’t want to go down that route yet as everything else was quiet, we need to keep something in reserve.

Meanwhile I’ve been hearing good things about a drug called Tucatinib which has small molecules.  Something I’m going to ask my Onc about adding to my drugs (it looks like it’s tablet and given with Trastuzumab. 
I’d be up for a zoom or a WhatsApp call if everyone else is. 
Missing everyone, saw Judy briefly at secondary bc meeting at QAH before my op and we all went into lockdown. (Judy: what a great secondary bc nurse Ellie is, she’s been fantastic to me.)


Love to you all keep well 

Julia Xx 

PS sorry this is such a long post 🙊

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Re: Support group for secondary BC hampshire/Winchester?

Sounds like a good plan, I'm missing our meet ups. I'll send you my details.

Hope everyone is safe and well. After my phone appt, I'm having another scan next week to check how things are, then if it still looks like the Tamoxifen isn't working the oncologist wants to put me on one of the ....ciclib drugs. Will know more after next phone appt in a couple of weeks. Got my Denosumab delivered to door by hospital pharmacist so that was good.

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

Carine - how did your phone appt go on 6th May? Sorry you have had some progression - do you know which treatment you'll be on next?

Nice to hear from you Judy - am pleased your ribociclib is still working ok.

Nicky & Julia - hope all is well with you both.

Elizabeth - we didn't get to meet you last time & I was wondering how you are getting on in Portsmouth following your move.

Didn't know whether you wanted a virtual meet-up on Zoom or WhatsApp sometime? I am in a support group on the Island & I hosted a 30 minute Zoom meeting yesterday which was lovely. I would need mobile numbers & email addresses from you all though - send them to me on a PM if you would like to & I can set it up.

I am continuing with cape for the time being, MRI at end of June.

Stay safe my friends.

Helen x

 

 

 

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi Carine and everyone, 

sorry to hear you had slight progression but hoping one of the inhibitors will work well for you. I’m on my 28th cycle of ribociclib but obviously not getting a scan this time. Hope you are bearing up with the lockdown. The scrubs you made looked amazing. Luckily the weather has been kind till today so been in the garden planting veg and of course plenty of flowers. I’ve taught myself to crochet at long last, tackling the Spice of Life blanket at the moment. 
I hope everyone else is ok during these difficult times and managing to get their bloods and treatment safely. I miss our meetings so much. Isolation is probably one of the hardest parts, not seeing family and friends. Stay safe lovely ladies and hope to be able to see you all in a few months 

 

Judy xx

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Re: Support group for secondary BC hampshire/Winchester?

So how is everyone doing? Hope you are all well, missing our meet ups. My scan showed "very slight progression". First time in 3 years, looks like, as suspected, Tamoxifen is not working so well any more. Oncologist said that if we were not in middle of virus pandemic, they would move me on to one of the cyclib inhibitor type drugs but going to wait for a bit. Missed my last Zoladex injection, have no more Denosumab. Next oncology phone appt on 6th May. 

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Re: Support group for secondary BC hampshire/Winchester?

So how is everyone doing? Hope you are all well, missing our meet ups. My scan showed "very slight progression". First time in 3 years, looks like, as suspected, Tamoxifen is not working so well any more. Oncologist said that if we were not in middle of virus pandemic, they would move me on to one of the cyclib inhibitor type drugs but going to wait for a bit. Missed my last Zoladex injection, have no more Denosumab. Next oncology phone appt on 6th May. 

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Re: Support group for secondary BC hampshire/Winchester?

I've just had a scan, hoping to get resulrs by phone next week. I got sent home from work on Tuesday. Although advice from my oncologist is not ro panic as my immune system should not be compromised ad I amnot on chemo. Does feel quite lonely though with all social gatherings cancelled. Luckily I have a good man looking after me. Feel concerned for those who are alone or worse.

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Re: Support group for secondary BC hampshire/Winchester?

Hi All

I must have sensed you had posted Helen as not logged in here for a while. I had good shrinkage at last scan I’m on cycle 28 now. It’s day 4 of my 12 week isolation I’m bored already. Had a sad weekend when sons wedding in Hawaii was cancelled plus reception here. Looks likely that they can rebook later in year all being well. 
 I hope everyone is coping ok and keeping safe with appointments etc. It’s going to be a long lonely few months for us all. 
love to you all Judy xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

OMG what a surreal situation we find ourselves in! Living with SBC is bad enough let alone this awful pandemic. I am settled in for the 12 weeks at least isolation and my OH too (he's asthmatic). We are trying to make the best of it but missing social interaction with family & friends - I can't play in my band & we've cancelled our summer season, there's no mens' cycling to follow (major blow for me!) and we have had to postpone our holiday with grandchildren celebrating OH's 60th until the end of October. Plus we were hoping to visit daughter & grandson in Indonesia but the UK are officially banned from there 😷 and of course there's no non-essential travel anywhere. Still on the plus side I had a scan 2 weeks ago & the liver mets have shrunk ever so slightly so I continue on cape tablets - yay.

I had an interesting day out in Parliament with the Breast Cancer Now Campaign Group meeting Jo Churchill, Health Minister - https://breastcancernow.org/about-us/news-personal-stories/delivering-our-secondary-breast-cancer-pe...

 

it would be lovely if we could all update on here - life in general, treatments, scan results etc - as we are not likely to be meeting up in person for a long while.

Miss you ladies, stay safe.

Love Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Unfortunately I won’t be able to make any date next week as it’s a busy week for me with some family things to sort out.

If you still want to have the meet up in Winchester remember it’s half term week so it can be a lot busier, plus it’s quite a distance for you all to travel when all of you are based nearer to Portsmouth.

Hope you manage to organise something and will try to get to the next one.

Nicky x

 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies , I’ve not been on here for a few days and hadn’t seen that this thread had been updated, it’s annoying that the new forum layout only shows up the latest 3 posts(from all secondary threads)!

Helen, I’m so sorry to hear about your father in law, what a sad time for you all, I do hope the funeral goes as well as you can expect with these occasions.

Regarding the next meet up I will confirm if I can be there or not once I know a bit more from my scan results next week, I never know if a change of treatment is on the cards or not until then, which could change my availability. 
Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi hi

 very sorry for your loss Helen, love to you all.

xx Julia 

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Re: Support group for secondary BC hampshire/Winchester?

So sorry to hear this Helen. Condolences to you and your family. Love and hugs Judy xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

I'm afraid you will have to count me out for February. Very sadly my father in law passed away on 25th Jan and I am supporting the family at the moment. Not sure when funeral will be so can't really commit to a meetup date. Would love to see you all very soon - all the best with scan results & treatments.

Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Shall we plan a meet at half term then? A train ride to Winchester? Hope scan goes well Julia, get my results in 2 weeks. Love to all xx

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Re: Support group for secondary BC hampshire/Winchester?

Week beginning Monday 17th Feb is half term so I can probably do any day that week. 

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Re: Support group for secondary BC hampshire/Winchester?

Unfortunately I wasn't able to meet up last week as I had 2 short notice visits to the QA. I won't be able to meet up in February 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies 

hope you had a good meet up, I missed you all. 
Dates I can do next time are 18th Feb, 20th, 25th (but those aren’t Wednesdays) and 26th Feb, 11th March.

I have my scan results in a couple of weeks.
Hope you are all well with not too many SEs.
Look forward to seeing you all soon.

Julia x 

 

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Re: Support group for secondary BC hampshire/Winchester?

Good morning all. I'm all set for popping over to the Spinnaker Café this afternoon. Weather looks dry, just need a few extra layers.

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

Just checking that some of us are still ok for tomorrow's meetup. Nicky & Julia - you will be missed, hope to see you very soon, perhaps you could have a look at some future dates when you might be free. Wednesdays are good for Carine & I am usually around.

Welcome to Elizabeth - have PMd you my photo so you know who to look out for in the cafe.

Anyone else out there who wants to join us please do - Wed 22 Jan, 1.30pm Spinnaker Cafe, Gunwharf Quays, Portsmouth.

Helen x

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies I’ve made a right old mess up on my dates next week 😟 my other appointment I thought was Wednesday morning is actually the afternoon and Thursday one is in the morning. I’m so sorry I’ll have to miss our meet up this time but will look forward to the next one. 
love to all xx Julia 

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Sorry but I can't make 22nd, it's the day after I have my chemo and the drive (either to Portsmouth or Winchester) is too far and the train isn't an option either. Will miss seeing you all and meeting the new ladies.  I hope you all have a good chat - and enjoy the cakes!

Nicky xx

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Re: Support group for secondary BC hampshire/Winchester?

I should be there, added to my calendar.🙂

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Re: Support group for secondary BC hampshire/Winchester?

See you there ladies. Have a good weekend 

Julia x 

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Re: Support group for secondary BC hampshire/Winchester?

I’ll be there ladies. Looking forward to seeing you all xx

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Re: Support group for secondary BC hampshire/Winchester?

Helen that suits me. See you then x

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone

Shall we say we'll meet up Wed 22 Jan, 1.30pm @Spinnaker Cafe, Gunwharf Quay, Portsmouth?

Post if you can make it.

Helen x

 

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Re: Support group for secondary BC hampshire/Winchester?

Happy new year everyone. Hope you all had a lovely time with family and friends. My first Christmas as a grandma was wonderful . I can make either of those dates if we met in Portsmouth as I have appts late morning. I’m  looking forward to seeing you all again and the meeting ladies.

love Julia X 

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Re: Support group for secondary BC hampshire/Winchester?

Hi everyone,

Happy New Year to you all.

Elizabeth, glad to hear you’ve moved and your appointment went well. 

I had expressed interest in joining you all but things are up in the air at the mo re hospital appointments so won’t include myself for your January meet-up.

Best wishes to you all xxx

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year ladies. Either date at Portsmouth or Winchester good for me xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi Helen. Either dates suit me. I'd prefer to meet in Portsmouth, but if more people want to meet in Winchester i can go there also. Yes I'm settling into my new life here in Pompey. I still can't believe I have finally moved over! Hospital appointment at the QA went great. My Oncologist is more patient friendly than my previous 1. I found the Oncology Dept small compared to what I am used to, but everyone was nice. Looking forward to meeting you all xx

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Re: Support group for secondary BC hampshire/Winchester?

Hello everyone. Hope you all our fine after all the family visits etc. I'm back at work tomorrow and to be honest looking forward to the rest! I am free on 22nd. 29th I have oncology in the morning so may be free in afternoon if other people prefer that date. 

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Re: Support group for secondary BC hampshire/Winchester?

Happy New Year to you all. How are you doing at the moment?

Thought I would suggest a couple of Wednesdays-anyone free 22nd or 29th January ? Happy to go to Winchester or Portsmouth, whatever the general consensus is.

Daughter & grandson returned to Indonesia yesterday so feeling a little low, we had such a lovely 3 weeks with them over Christmas. 

How was your first appointment at the hospital Elizabeth? Hope you're settling in to life in Portsmouth. 

Helen x 

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Re: Support group for secondary BC hampshire/Winchester?

Happy cancerversary xx

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Re: Support group for secondary BC hampshire/Winchester?

It's my 7 year cancerversary with secondaries today and I just want to thank you lovely ladies for your support. Welcome Elizabeth and Ruby and hope to see you in 2020.

Have a peaceful Christmas and hope 2020 is kind to you.

Helen x 

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Re: Support group for secondary BC hampshire/Winchester?

I will be unavailable to meet everyone on 2nd January. My Fiance told me today that the QA in Portsmouth have sent me an appointment letter to meet with my Oncologist or a member of his team for the 1st time. This means that on Saturday 28th December I move to Portsmouth & the following Thursday I attend my new hospital! x

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Re: Support group for secondary BC hampshire/Winchester?

I received a phone call yesterday from the Queen Alexandra Hospital in Portsmouth asking me what date I am coming over as they want to arrange a hospital appointment. Once I know the date I will let you know as to when I am free to meet with you all

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Re: Support group for secondary BC hampshire/Winchester?

Hi all. I can make any day in January (as long as it's Wednesday). Assuming nothing said at next week's onc appt to change that. Welcome Ruby & Elizabeth to our friendly little group.  

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Re: Support group for secondary BC hampshire/Winchester?

I hope you can make the January meet up as it will be my 1st time also x

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Re: Support group for secondary BC hampshire/Winchester?

Hey ladies I’m in! Sorry I couldn’t reply to the planned meeting. A meet up in January either Winchester or Portsmouth will be good for me. Welcome baby Lottie you arrived on my birthday! Congratulations Julia. Wishing you all including the new ladies a wonderful Xmas and happy new year xxx

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Re: Support group for secondary BC hampshire/Winchester?

Hi ladies

Congratulations Julia, welcome to Grandma's World! Enjoy you cuddles with Lottie.

It seems that no-one is able to make next Wednesday so I am going to say it is cancelled, obviously it's a busy time of the year for everyone, hopefully we can come up with a date in early January either in Portsmouth or Winchester and welcome some of the new ladies who've said they'd like to join in.

Nicky x

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Re: Support group for secondary BC hampshire/Winchester?

Hi NIcky,

I hope you don’t mind me piggybacking onto this post but I would be interested in joining you ladies on a Winchester meet-up sometime. I am having my second appointment with the oncologist next Monday to find out the results of my CT scan.

Best wishes xx

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Re: Support group for secondary BC hampshire/Winchester?

Hi all

my exciting news is I am a Grandma 🎉 Little baby girl born on 27th November, she’s absolutely gorgeous and we are so thrilled. Her name is Lottie Rose. 

I won’t be able to make the 11th Dec meet up unfortunately but hopefully will be at the next one.

 

Have a wonderful wedding tomorrow (well “today” in half an hour😃) Carine and Phi I Hope the sun is shining for you both. Have a fabulous day.

 

look forward to meeting you Elizabeth in the New Year, good luck with the move.

 

love to all

Julia