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Secondary Private Group

28 REPLIES 28
Community Champion

Re: Secondary Private Group

Bev- they normally send you an e mail about joining the private group - if you haven't had one you could e mail the moderators about this.  moderator@breastcancercare.org.uk

Member

Re: Secondary Private Group

Hi,

I've requested to join the Secondary Private Group as a means of support. I understand you are cautious regarding new members, but wondered if I could be accepted.

If you have any concerns please feel free to email me.

I look forward to hearing from you,

Bev 

Member

Re: Secondary Private Group

Hi Lizzy, I applied yesterday to join the private group but till can't get in it. I have stage4 secondary bc with bone, liver and omental layer mets. Thank you.x

Highlighted
Member
Member

Re: Secondary Private Group

hi JanieB,

 

if you key in Capecitabine in the search box you'll find a thread with ladies who are on that chemo, (I think its in the treatments section) and it would probably be a better place to start.

Good luck with your treatment, I hope its going well for you.

Kindest wishes

Member

Re: Secondary Private Group

Hi I have secondary lobular  bc, diagnosed nearly 3 years ago.  Currently on Capecitabine. I would like to join please .

Pan
Member

Re: Secondary Private Group

Is this Secondary Live Chat? 

Member

Re: Secondary Private Group

I can't work out either ... can't find the button to request to join..could a link be put up
Member

Re: Secondary Private Group

Hello cassy
Welcome to the forum ..real people here that understand how you feel as most of us have the daily battle to get up smile and say "I'm fine" when asked!!
I hope that you can have some sort of further treatment ..we always hope oncologist can pull something out of his magic bag don't we ?.
Maybe you would like to pop in to bone mets threads ..a lot of daily banter there to help but also lots of good support too from ladies that are going through it too...
Hugs xxx☺☺☺☺
Member

Re: Secondary Private Group

I was on letrizole for 2 years but it didn't help my metastatic cancer i have iv chemo twice while being on the drug then removed it told me it no longer worked
Member

Re: Secondary Private Group

I am so pleased to find somewhere i can feel comfortable talking about my long fight for life with this cancer wandering around my body as if it's in charge.i want to take charge of my cancer but have just got exhausted with the fight look forward to take this journey to the next stage cause I've got nothing left
Yours sincerely
Cassy
Member

Re: Secondary Private Group

I had it in my veins each week. Veins not too good due to previous chemo and 1st & 3rd week took 4 attempts .onc has suggested pick lines but I'm not keen just yet. Now ask for senior or experienced nurse explaining why & all understood.xx

Member

Re: Secondary Private Group

Thanks for replying 😊 did you have a line in for it or into your vein each week?
Member

Re: Secondary Private Group

Hello! I'm having paclitaxol and I'm fine on it. Have had 4 lots weekly got another 8 to go if all goes to plan.no hair loss yet either ! I'm new to this too and also asked to join private group yesterday . I also feel much better now treatment has started .x
Member

Re: Secondary Private Group

Hi all

I had breast cancer in 2013 and have just been diagnosed with multiple liver mets and one bone met so having a bone scan to check if more. I am starting Paclitaxol in 2 weeks for 18 weeks with a ct in middle. Am feeling very positive, before yesterday I was thinking that was it....but now treatment sorted and imminent I feel back in control 😊 I've asked to join private group but not heard anything yet, would just love to hear from anyone on this chemo and how you're doing although I know everyone is different. Thanks everyone x 

Member

Re: Secondary Private Group

Member

Re: Secondary Private Group

Could people sign this to make this effective drug available on the NHS.

 

https://www.change.org/p/secretary-of-state-for-health-make-palbociclib-an-effective-secondary-breas...

Member

Re: Secondary Private Group

Sorry, found it now so scrap that msg.
Member

Re: Secondary Private Group

How can I join this group please, I can't see the button you refer to .. am on a mobile rather than pc if that makes a difference?
Member

Re: Secondary Private Group

hello. Can you tell me how i join the group. i have secondary breast cancer

Member

Re: Secondary Private Group

Hi Lizzy,

could i please join the group?

Member

Re: Secondary Private Group

Hi all, 

 

Thank you for your interest in joining the Secondary Private Group. 

 

If anyone would like to ask to join and have not already, you can join by clicking the secondary private group and then clicking the Ask to join groups.pngbutton on the right hand side of the screen. 

 

If you have any other questions you can email us at moderator@breastcancercare.org.uk.

 

Best wishes, 

 

Lizzy 

Community Champion

Re: Secondary Private Group

Dear Lizzy,

im sure I have asked to join this group, but just in case 

i havent, please could I join it? Thank you

 

moijan

 

(oh, after I posted, I spotted my first post, sorry.)

Community Champion

Re: Secondary Private Group

Please can I join this group? I have been posting on the secondary board. I am trying to come to terms with my current situation, but finding it difficult. I was dx nearly three years ago with sec bc, but it is no longer under  control. Thank you, 

 

Member

Re: Secondary Private Group

Lizzy please can i join this group. I have just been dx with secondary TN BC so i need the support
Member

Re: Secondary Private Group

Hi.just my own thoughts.i think its great to have a private group..but I will carry on with original.while coming to some sort of terms with this horrid illness over two years ago.i didn't sign up.but I read others posts and they helped and educated me so much..i now post and will continue to in the hope it may help others like I was helped.thanks Sharon.
Moderator

Re: Secondary Private Group

Hi stresshead

 

There is a new private group here which you will need to ask to join.  It is in the main board listings, which you may not see if you access your threads via bookmarkers.  It would be great to have you and anyone else with secondary breast cancer join for a safe space to chat and share images if you wish.

 

Best wishes
Anna
Digital Community Officer

Member

Re: Secondary Private Group

Hi Lizzie...have i missed something? i'm a bit of a technophobe and didnt realise there was a private secondary group on this forum. I post on the secondary section a lot and would be interested to know abot the private grop and how i get on it. Hoping you can help. Thanks

Member

Secondary Private Group

Hi all,

 

Thank you for your interest in the secondary private group.  It has been brought to our attention that there are some concerns over the safety and accessibility of the group.

 

All questions are listened to and it is understandable that the safety of the group is of such concern for everyone.  Please read all the information below, as we hope to alleviate all and any concerns, though please do continue to ask as the purpose of this space is for you all to feel safe and secure in order to provide a much needed space to be as honest and open with each other as you wish without the fear of others being able to intrude or read what you are all sharing.

 

Before accepting members to the secondary private group we read and check the content of their previous posts and see if they have previously posted on secondary boards.  If they talk about their diagnoses then we accept their request to join the group, If we are unsure about a user’s diagnosis we then email them asking if they can give us some more information about their diagnoses and explain that this is a closed and private group just for those who are living with secondary breast cancer.

 

We are very careful with whom we accept into the group and do perform checks but what we are unable to prevent is someone giving us or you false information. However, we feel confident that the group will provide a supportive, private community area for people with secondary breast cancer where they can feel safe and supported by others who have shared or similar experiences, which is in an area which cannot be viewed by anyone on the open forum. 

 

Also, we have happily now fixed the glitch which prevented users from viewing the members list of the group. You can now see the members of the group if you click the view all button at the bottom of the members bar on the right hand side.

 

Best wishes,

 

Lizzy & Anna

 

Community Moderators