Hallo ladies! Just dropping by to catch up and it’s with mixed emotions that I find a few new names in our group… But hope you all find support and encouragement as you tread the path we’ve trodden before you…
I was diagnosed Easter 2009 but already had secondaries in the bones so my treatment post chemo, surgery,radiothereapy has continued… Bit of a joke really - still haven’t had the opportunity to plan that longed-for holiday 'cos have never really progressed beyond 3 monthly reviews!
Sadly - after tamoxifen didn’t halt progress, neither did the first of the three available aromatose inhibitor drugs (Femara) plus monthly tummy jabs of Zoladex. After 3 months, CT scans show a mixture of progress and healing in bones and further spread into a lymph node in chest wall under the affected ex-breast. So I’m on Day 13 of #2; Aromasin. They’ve now also taken base-line CA-153 tumour marker blood tests to compare in another 3 months to see if THIS drug is having any affect without the need for another CT scan just yet. We’ll see! Side effects “interesting” but tolerable… Eventually…!
But not all bad news - my rubbish hip is going to be sorted! Hip surgery has been recommended (so they don’t expect me to go anywhere JUST yet despite secondaries!) & I’m just awaiting a date…Fingers crossed that it’s sooner than the 18 weeks being thrown about so I can dance into summer instead of hobble!
Hope this is all encouraging and not too boring! There IS life after IBC diagnosis even when/IF it spreads!
Hi Haxted and all other IBC ladies
I was diagnosed at almost the sametime as you Haxted, March 2009, infact 2yrs on Thursday since my first chemo. I’m still on herceptin 2 yrs later as my first CT scan showed a spot on my liver, apparently one consultant thought it was spread and another did’nt think so as it was so small no sign of it since I’ve finished chemo (although I have cysts and gall stones apparently!).If there is anyone else out there with a similar story be good to compare notes! Treated as suspicious so herceptin every three weeks for awhile yet!Health care at home nurse comes and we have coffee and cake - 1hr and 1/2 and its done. I’m sure if it was in tablet form I wouldn’t be bothered by it although I’m so used to it now I call it Vit H as I’m sure its protected me against all the nasty cold/flu bugs through the winter!! After chemo had mastectomy, rads and had recon last Nov. Now waiting for it to settle down so I can have lipo fill and uplift of the other one together with a new nipple. I actually feel great, hair is great and nails are finally growing again, love my food - need to lose a few pounds!! Go to the gym, walk miles!! Infact of to Lake District end of July for a weeks walking holiday! So a little dancing into summer with you sounds good!!! I’m also moving house soon (fingers crossed)! Infact future is looking rather rosy and long may it stay that way! Check up every 6 months at mo - hoping for it to go ton 12months in the future.
Any newbies out there - there is life after IBC diagnosis - Haxted hope you get your date soon!
xxxx
Hi Haxted, got my ballet pumps on to join the concert…x
(Not ibc but a bone mets girl who had her hip replacement in 2003.
Diagnosed stage 4 from the start. Hope Aromasin is working well for you.)
Hello all, another IBC wallah here, delighted to report that my onc “promoted me” as he called it to yearly check-ups with him to alternate with the surgeon, Im really delighted because the stuff I read on the internet when I was diagnosed in Nov 08 terrified me,I really didnt think Id be here now. I cant say any part of my recovery is down to positive thinking, no-one could have been more negative or pessimistic, I spent most of my time on chemo thinking "whats the point of 6 months of feeling crap just to pop my clogs at the end", well, oh yeah of little faith!! Im trying to make up that lost year now, I must have distressed my hubby so much, however its made us closer than ever so that`s a blessing in disguise. As they used to say on Star Trek, live long and prosper!
Love to all, Mags xx
Hello to all IBC ladies, new members and old, Haxted thank you for posting your news, and Mags I hope you are still enjoying life in Spain? Fudge in Cornwall, nice to hear from you too.
I think the news of Jackie’s passing affected us all, she was always here on the site when I was first diagnosed in 2008 and her help was invaluable.
I’m sorry I haven’t been on this thread so much recently, life has a way of taking over everything and what with the fire in November, 6 fractured ribs for no reason in December and then reconstruction in February, I’m exhausted just thinking about it all.
Hope that Jan, Andie and others are all good and getting on with life, as we should if at all possible.
Take care all, xxx
Hi Girls
Don,t know about dancing into summer, increasing age, arthritis and Femara have a lot to answer for, but I am certainly moving on with a much more positive attitude.
Welcome to you new IBC ladies, and glad to catch up with old friends. Such sad news about Jackie, she was such a help to me back when I was first DX. Pash is also often in my thoughts - her PMA has helped me through many a dark patch.
I do find that I have had to wean myself off the site to a certain extent, I found that I kept dipping into threads where people have problems that I have avoided so far and was worrying myself about the ‘What If?’
If I can be of any help to any newbies just ask, I promise to try.
I hope everyone is OK and enjoying our sunny spring weather
Andie
Hi All
Hope everyone is enjoying this lovely weather.I don’t know about dancing but I’ve actually got the old sun lounger out n sat in the garden the last few days, should be sorting stuff ready for moving really - theres always tomorrow(would have been harder to say that 2 years ago when I was just going through SEs of first chemo!) - so lovely to feel the sun! Andie I’m the same as you - dwelling on the ‘what ifs’ at times- makes you think too much! However I did find my diary that I wrote just after I was dx and while I was on chemo - I was really positive and reading my notes made me feel proud of myself for getting through those first 6 months! Let alone the mastectomy and the recon!
Mags I hope to follow you soon with promotion!
Peacock I hope your recon went ok- mine was Nov 12th - no implant - extended LD using skin from stomach - just starting to feel like mine - I can move the muscle in my chest - good party trick maybe!! Lipo fill to new boob and uplift of other one to match in next 6- 12 months! So lots to smile and dance about!!
Belinda ballet pumps sound good - we could all be in swan lake!
Haxted have you had your date yet? we can’t have a summer dance team without the originator!!!
Much love to all xxx
Hallo! Yes I have my date for hip surgery… May 16th! No 18 week wait there then! (gulp).
So I WILL be dancing into summer! Actually,I arranged to do a sponsored walk (could have been a sponsored dance, couldn’t it!) on September 20th before I got the date…Without the new hip, couldn’t do it (might not be able to do it WITH the new hip but so what - 10 laps round the house on crutches might move potential sponsorees to pity!)It’ll be to raise awareness and funds for the Kibera, an Nairobi mega-slum our church supports.No idea where I’m going to do it yet. Or how far. We’ll see! SO tired today though, can’t help thinking that perhaps I’ve gone potty…!
I too have been sitting in the garden in the summer house these last few days, resting up me poor old feet (the only sideeffect I seem to be left with having been on Aromasin for 3 weeks now). Could do with a resident foot-masseuse…any volunteers…?
Just popped on to make sure you all see this link… breastcancercare.org.uk/forum/viewtopic.php?f=108&t=30618&p=519568#p519568 Sadly Sharon died yesterday on her 37th birthday… Its been a tough month with Jackie also dying on March 3rd… Sending love to you all…
Theresa x
Hi Ladies,
This week is my 2nd anniversary so I’ve popped in to catch up. So sorry to hear about Sharon. She was so young and had such a rough time of it. None of the treatments worked for her. Heartfelt condolences to her family.
Great to hear all the positive stories though. Haxted, I hope the hip op goes well. Peacock, you’ve really been through the wars haven’t you. I hope the recon is going well and you’re having a bit of a rest from dramas. Woody, great to hear you’ve been promoted. So have I. My next appointment is Sept 2012. I’ve opted not to have a recon for now. Don’t miss it and can’t really afford more time off work this year.
I’m still doing very well (despite also being a born pessimist). So well that I’ve signed up to do the South Africa trek with Breast Cancer Care. I’ve been very busy fundraising and training since January. If anyone wants to keep up with my progress send me a PM and I’ll give you the JustGiving web link.
I’ll be 50 soon and I’m planning a few celebrations for the birthday I didn’t think I’d see. The cloud on my horizon is that my mum isn’t doing so well. Her lung cancer has erupted so that she now has 5 tumours in her brain and is losing her sight.
Best wishes everyone, and especially to the new people.
Jan xx
Well here I am - hopefully with some news that will add a lighter touch and give hope? Am back home from hip replacement surgery 3 weeks ago and doing very well - even walking around house without crutches at all for much of the time! Really takes the mind off cancer-related issues!
The visiting District Nurse recently did all my blood tests at home for next Mondays oncology appointment and it came as an unexpected surprise when my BCN phoned as she could not wait till Monday to tell me that the results for the CA 153 marker test which they are now using to monitor the effectiveness of Aromasin in slowing the spread of my secondaries)show a continued reduction! They’ve gone from 100 when I started Aromasin in November, to 79 6 weeks later and 49 now! So that’s good news! New hip, stabilising cancer!
Hope all are doing ok!
Hi Haxted,
So glad you’ve had some good news! Reading back through the old posts made me realise how much we’ve all come through over the last 2 years. We sure deserve a break don’t we!!
You’ll have seen from my recent post that I am doing very well now and totally fit to join the dance company. I feel very lucky.
Sadly my poor mum is very sick from her lung cancer. She has brain secondaries which haven’t responded to treatment, the lung tumours are on the march and she’s in hospital having another MRI, this time to check for spine tumours. Onc has offered chemo to hold back the lung tumours but I’m worried she’s not strong enough to stand it. It won’t have any effect on the brain (which is causing most symptoms). I’ve persuaded her to wait for a few weeks and Onc has her on steroids to try to build her strength. Just hope I’m doing the right thing. 
Hope summer is going well for everyone else. Here in Scotland it has been pretty awful so far. Can we try a group think and send some sunshine our way?
Jan xx