Thank you for asking to request to join the Secondary Private group. I have put some steps below on how to request to join. I hope this helps
1. First, click on the Secondary Private Group. I have included a screenshot below.
2. Then click the 'Ask to Join' button in the top right hand corner of the screen. The moderators will then receive your request and confirm your diagnosis.
I hope this helps, if you have any other questions please do email us at firstname.lastname@example.org.
thank you for the replies. I am feeling much better today. Ive just got back from having my Zoladex jab, and I got to have a good chat with the BCN.....so i do feel better about side effects now.
I think during the 4 year gap between finishing my original treatment and finding out about my secondary, I had got used to being able to do "normal" everyday stuff without worrying about things.
I need to start listening to my body a bit more and only do, what I can do rather than getting stressed about it.
Carolyn - how can i join the other secondary forum you mentioned?
sending big hugs to everyone
Morning ladies, hope your all keeping well and have enjoyed the long weekend, im feeling rubbish this morning, very achy back and feel so drained and tired, also been feeling quite sickly since yesterday, getting hubby to ring work and tell them I won't be in today. Just a thought but I have noticed whenever I get my pain/achey day's I notice I get really tired with it, does anyone else get this??
Hello to the newbies, you will get lots of support and advice from the ladies on here.
Well I'm off back to bed now, hugs Janette xxxx
It is a common side effect when you have the first infusion of a bone strengthening drug. But I have no idea why! So, hopefully you won't experience anything like it for the ones that follow which might put your mind at rest.
Cmccallam05 - so sorry you are having such anxious times as you await your Mums CT results. We do all understand how this feels as we are used to the scanxiety ourselves and I can't really suggest anything that would help. Maybe it's worth speaking to someone who can help with the effects that your Mums condition is causing you? I know it affects my two daughters but don't really know how they coped as I know they didn't see any counsellors etc. There are other treatments available to your Mum even if she is not HER2+, such as oral chemo (Capecitabine) which can be taken for many months if not years which is different from many of the chemo regimes, plus other hormone tablets can have a positive effect even if an existing one has stopped working. Fingers crossed that the results show that her current combination is working well.
Mrstimps, I don't know of anyone in particular who has mentioned they are treated in Salisbury but I am based in Hampshire. There is a secondary BC group who try to meet up every month or so, although it's been tricky to sort out recently, so your Mum is welcome to join in our little gatherings if she feels she wants to. We post the date and venue on the Meet Ups part of the secondary BC part of the forum and are meeting up this Thursday. It's a worrying time when you get that awful diagnosis but most of us have felt more able to cope once a treatment plan is in place so I hope she gets that sorted soon.
Hi to all other mets ladies. I've also been a bit absent from here over the past few weeks, too much stuff going on at home - but in a good way - that has kept me away from posting on here but always manage to read the goings on!
Sorry I havent been on for the last few days. I had my first infusion of ZOMETA on Friday.
I was fine until the early hours of saturday morning, woke up feeling absolutely dreadful, not feeling sick, more like a severe flu......Although I felt better yesterday, Im still not back to how i was. I am still feeling very drained of energy and my head is all over the place.
Has anyone else on here had Zometa? and had any of these side effects?
Sending hugs to everyone
Hi cmccallum05 - I'm sorry to hear about the worries with you mom. It's certainly a scary and frustrating place in the world of cancer. There are lots of clinical trials ongoing, and coming up in the future, which are looking very promising - especially the immunotherapy drugs. However, I share your frustration that it feels like things are not happening quickly enough. It all takes such a lot of money and time with clinical trials.
It's hard being the person who has cancer but I also appreciate how awful it is for family and friends. It's good that your mom remains positive and she's very lucky that she has you to look after and support her.
There will be lots of ladies here who will offer support. I don't have the same type of cancer as your mom so I don't have the same treatments and therefore can't help you with any advice on that front.
It is hard waiting for scan results - commonly known as 'scanxiety'. Have you tried anything like deep breathing exercises, yoga, drinking chamomile tea, having a bath with Epsom Salts to help you relax and de-stress? How about doing some nice things with your mom while you wait for Thursday? A trip out to somewhere you enjoy?
Keep sharing your feelings here if it helps. I can understand you may not want to tell your mom how you feel but it doesn't do any good to bottle it up.
Best wishes to you and your mom. Let us know how you get on after Thursday's appointment.
Needing some prayers and support. My mom has her ct scans results appt this Thursday. We have been waiting 2 weeks to hear. My mom is calm and relaxed and positive the afinitor and exemestane is working. She was diagnosed in 2012 wit ER+, HER2-neg MBC with bone mets at 58. Treated with Femara successful until summer of 2015, tried tamoxifen and it didn't work. In January, her liver showed two small lesions. They never did a biopsy. I am so trying to be positive and strong for my mom, but scan results are always so scary!
Since diagnosis, she has lost about 150 pounds (she was around 300 at the time). I also find myself getting angry that there isn't a cure yet. This is 2016! I'm mad that some women seem to have this miracle drug called Herceptin, and others don't. I know it's not right to be mad, I'm just scared. Why do they take so long to bring new drugs forward? Where is the miracle drug for ER+, HER2-neg cancers?
I love my mom so very much and some days I just feel like crawling into a dark hole. I wish I could take the cancer.
Hello mo. I tried to email the moderators but my iPad won't let me get past a message that appears on the screen? I will try again. Do you know of any other way that I can get on this website? Thank you anyway for being so caring and telling me about the email.
i am glad that Margaret liked Australia. I am used to it, so I probably don't notice that it's pretty nice. I like Europe and England more than Australia. My family are from Lithuania, they were WW2 refugees who came to Sydney in 1947. I was born here, but I have Lithuanian citizenship, and I have visited Lithuania, even have a Lithuanian passport as well as my Australian one.
I know England and love it. We spent a month in London five years ago, then we were in Nottingham. Liverpool, Manchester and Chester as well as Beaconsfield as our son was working at The Royal Saracens pub for two years as an after finishing high school here as he didn't know what he wanted to do, so Student Travel Abroad found him a job in Beaconsfield. He is now in Abu Dhabi as cabin crew with Etihad Airlines on exchange from Virgîn Australia Airlines for a year. We bought an apartment in Sydney as Virgin Australia is based in Sydney. We travel to Sydney to use the apartment as he will only be back on 28 June.
i have heard of Gerrards Cross, when you say Bucks, does that mean Buckinghamshire. Do you know Beaconsfield?
Yes, I had scans which showed my organs clear and my bones healing, but my tumour markers had risen so my onc changed my medication. I think in England I would be classed as stable as my scans hadn't changed in a year. I don't understand my onc.
You must be HER2+ if you can take herceptin? I am er,pr+ HER2-. It's good that your lung mets vanished. I only have bone mets but always worry that they will spread.
it would be wonderful to meet for coffee. Canberra doesn't have a group for BCC Secondary, but when we were in Sydney a few months ago, I thought I found a group, but then was told by the moderator of the group that it was not running anymore. So it's quite lonely for me as I don't personally know anyone else with this awful disease.
hope you have a lovely day
Thanks for your reply & hope the moderators get back to you quickly so you can do more on this website. They may ask for your diagnosis. It will be fine. Just a little hurdle because people were worried about privacy. These threads are open.
I saw my friend/neighbour for tea. Her son & family live in Adelaide but she travelled quite a bit and showed me her photos. She went to Melbourne and Sydney too and it all looked so beautiful. The cousin she travelled with went to Canberra to friends but Margaret stayed that week with her family. Long empty beaches, and plenty of sun. One very hot day approaching 40, but some cool days and nights too. She liked it so much but her other son lives with her here and so I don't think she can move now. She is my age..........68........where did the time go?
I live in Bucks........near Gerrards Cross. Do you know England?
You say you are on the 3rd line with faslodex. Your onc is probably tweaking things by changing hormone meds if there is any progression at all to keep the mets guessing. Do you have scans? i think most oncs follow protocol for sec. It can be so unpredictable. I was nearly put on docetaxel/herceptin but after a meeting onc changed his mind simply because I look so well, so keep it for the future. I know there are many treatments out there, as the ladies here know better than me. But it isn't simple.........my lung mets vanished, bones stable, but skin patch quietly appeared, all on letrozole. My onc says I could even go back to tamoxifen which I had for 5 years after primary (2001) if letrozole stops working. He doesn't seem to count my skin as progression.........it's not a 'killer' but can be very uncomfortable which is why I asked to try radio early. There is a skin thread here that i visit too.
If your onc is involved in research then he must have a deep understanding. If he has said you have years ahead then he must be confident that you are controllable. He sounds good to me, and is keeping a careful eye on you.
I hope you learn plenty on here. it's a pity we can't all get together somewhere to talk over coffee! I go to a BCC secondary group just to meet others in the same boat and it's very good......do you have anything like that? Have a good day in Canberra.......it's a Bank holiday weekend here so I will get all my days wrong next week. Are there Bank holidays in Oz? Take care for now and sorry I have rambled on!
Happy Bank Holiday to everyone!
Good morning ladies. I hope you are having a good bank holiday. Carolyn your story gives us all hope. Its cold in the NE with rain promised later. Off to a plant fair in York. Its going to pour with rain. Oh well that's what we gardeners do. Crazy people. Sending love to all . Special hugs to all waiting for results. xxx
Hi Amalfi, thanks for the reply , i am waiting for the facts and the figures from my pension i am just up in the the air ?.?
Hi Natalie 1. Thank you for the information about the Hallwang Clinic. I have been in touch with another clinic in Germany at the recommendation of another lady, it's called the BioMed Clinic, and it's not nearly as expensive as the Hallwang Clinic, but I don't know if BioMed Clinic does tumour antigen testing or immunotherapy.
i will ask my onc to forward my diagnosis and treatments to both clinics and make a decision, but I am very keen to go to Germany, as a lot of the treatments in the rest of the world are much more advanced than here in Canberra Australia.
i guess that The Christie would not see me, even though I am a EU citizen from Lithuania.
Thank you redrindinghood. I will try the moderators email. My onc is also a bit strange, my husband always comes with me and my onc is very thorough but in just going by what has been protocol. He is a very well respected onc in Australia and does research into breast cancer. It's good that you take a friend with you and that the patches have been discussed with you.
My onc said at the beginning that I will live for many many years, I am 62 now, but how can that be as I am already on Faslodex which is my third line of treatment.
i live in Canberra, so maybe your friend has visited here. Hope you have a very very nice tea. Where in England do you live?
Hi Giedre, not sure if this will help but I have just been reading my hospitals website and there's an article about the clinic in Germany you are interested in.
It's about a patient who is trying to raise £40,000 to pay for treatment there.
It's called The Hallwang Clinic, where treatments include: Tumour Antigen screening, Peptide vaccinations, Immunotherapy.
She has a blog it's called: killerkath.wordpress.com
I didn't realise but my hospital The Christie is the largest cancer centre in Europe and ranked one of the most technologically advanced outside America, it is the top centre outside America!! So I suppose I am pretty lucky to be under in.
Chinup I actively sought medical retirement. My pension was made up to the full 40 years although I had only worked 33. With pip and esa I'm better off. I meet fiends for lunch and potter about, best decision I made.
Geidre, Yes, I think contacting the moderators will do it. They are a bit careful on our behalf because of privacy, but on the other hand they will see you are just another secondary person by a quick look at your posts, and they click on something beside your name on their site so that you can make contact privately. Also they want to stop spam getting in. You probably know that you can click on someone's name, and find 'contact me' on their page, or, when you are signed in there is a little envelope to click on. You can choose 'compose a new message' there, but you need to know the person's secondary name. The name is there if you use their page.
And yes, oncs are a strange bunch. But I suppose secondary is a strange world. On the other hand as you learn more, and hear about different treatments, you can ask questions. I find that hard, but I gird up my loins! If nothing else they will answer and give their reasons for what they are doing. I take a friend with me + notepad too. For me I think the more we know the better we cope and heal. At my secondary dx the consultant said I had 'patches' in my bones. I was non-plussed. At the next appointment, knowing more, I asked where the 'patches' were! I knew nothing then. A bit more now.
Here is a live version of the email address:
Take care. In Australia you are the other way round! Spring here, autumn for you. I am just going to have tea with a neighbour who has been to Australia to see her grandchildren. I'm not sure where. I might get back and tell you!
Redridinghood. Thank you for your advice about the private message. I have tried and tried but it does not work. Perhaps it's because I am I'm Australia. I will try and email the moderators just by my email now.
Tumour markers are very stressful for me, and I wish they didn't exist. I had never heard of such things before diagnosis, as well I hadn't heard of bone metastises.
Hugs to you
Welcome to the thread! i have been reading your posts and as usual it is strange how different our oncs can be. Yours seems to use tumour markers to help with treatment, but mine won't use them AT ALL! Mine relies on scans, and how I say I feel. But at the same time if I learn anything on here from reading other ladies' experiences I let him know & he listens. But no TMs.
I am really writing to you because you said you are having trouble sending Marirose a private message. I assume you have got as far as clicking on her name, and then trying to click on 'contact me'. But for it to work you have to be signed in. You go to the red button at the top right of every page.......'sign in'........and click. Use your username and password. That might do it. But...........because of privacy they have added another step which you probably need. You have to email the BCC moderators:
They have gone quite strong on privacy recently, so you will probably have to contact them so they can just check you out. They look at your username, previous messages. That sort of thing. They will get back to you and ask for your username & password, and once they say you're fine then everything will work. The 'contact me' button to send a private message to someone will work. The moderators have a magic method! So they let each person in one at a time! It's just for extra privacy. These threads are open. Once moderated you can private message, go to the secondary private group listed on the secondary page, and ask to join in the 'live chat' on Tuesday evenings. You may have to ask for that separately.
It took me ages to work all this out!
Sorry that was long winded! Take care. We have a Bank Holiday weekend here, and it is April but COLD! The holiday may mean you don't hear from the moderators until next week. I hope all this works.
Hello Carolyn. Yes is quite nice where we live but very cold in winter and hot in summer. Because there are so many trees it's always a threat for bushfires in the summer. Melbourne is a much bigger city, and I imagine your dad went to the Melbourne Cricket Ground.
i agree with you about the coffee, although I like chamomile tea a lot better and would only drink it through my mouth
Hi funny face. Thank you for your welcome. It's good that you have been able to live with lung mets for such a long time. Have you been on the same treatment all these years. Ibrance is not available yet here in Australia. I was on letrozole at the start but my oncologist changed me to tamoxifen. Now I am starting Faslodex with Xgeva. I hope that you get a bone scan as it must be a great worry to you. My scans showed know organ involvement and healing bones, but m oncologist changes my treatment if tumour markers rise. I think my markers rise just from all the stress of this disease and I especially hate having my blood taken.
Hugs to you xxxx
Marirose. I tried to message you but can't seem to do it. Thank you for the information about the Hallwang clinic. I will look it up online now. Hopefully I can make contact with the lady who is there now to ask her opinion. I would be ever so grateful if you could help her and I make contact.
Welcome Giedre! I live in the USA. I live in Pennsylvania about an hour west of Phildelphia. I have had lung mets for 10 1/2 years. My last scan said the bone met in my back was stable. If it's stable then it must have been there before to be stable. No one ever told me that it had me set up camp in my bones. I haven't had a bone scan since I started with mets. When I see my oncologist in June I'm pushing for a bone scan. She told me I didn't need one with just one met. Well if I haven't had a bone scan in forever how does she know I only have one bone met. I only get a CT of my chest. She is a new oncologist for me. My old oncologist quit, so I'm getting used to her. I take ibrance and letrozole. It is working great. Is ibrance available to you? Have a great weekend. It's midnight here. I'm heading to bed. FF
I do hope you are reading this. I have been in touch with lady who is enquiring about the clinic in Germany it is the HALLWANG in the Black Forest she is willing to chat with you about it but as she is going to Germany this weekend to meet the people in charge of the clinic to get all the information and costs she will not be around for a while. If you would like to contact her you could do it by private message are you set up for this you could pm me.
Hope this is useful for you xxx