Hi all,
There seem to be so many new women on this board now, I wondered if you would like to introduce yourselves and maybe give a bit of background info so that we can get to know each other?
I am Jenny, 47, 2 children aged 6 & 7. Diagnosed stage IV July 2005 with liver mets. Had EC chemo, tamoxifen, taxol, femara and now capecitabine. ER+ Her2-. I’m doing very well and enjoying life pretty much as before.
Look forward to hearing from you.
Jenny
xx
What a good idea Jenny - when I joined just over 18mths ago I found something similar here and it was very helpful. Now we still don’t have profiles it is very hard to know who we are talking to.
I am 62, 2 kids 36 & 34 happily married to same man for 41 years!
I was dx 17yrs ago at 45 - ER/PR neg - 6cm tumour treated chemo/rads. New primary 5 years later and mastectomy and rads followed. 6 mths later recurrence in skin treated by VRAM flap after excision of chest wall. ECF chemo. 18mths later new primary in other breast - 7cm and widespread lymph nodes in axilla - mastectomy/rads then Taxotere. 2yrs later extensive bone mets - all spine, pelvis, ribs, collarbone and skull. On bisphosphonates. Lot of lymph node probs in neck, collarbone, brachial plexus areas treated with capecitabine then vinorelbine. But kept recurring. Discovered HER2 pos and put on herceptin. All lymph node problems cleared up rapidly and no trouble with them since. So currently keeping well and still on pamidronate and herceptin 3-weekly.
Dawnhc
Thought I would join in too. My name is Jetty I am 41 and have a daughter aged 6. I was diagnosed in October 2005 with primary and secondaries to my ribs, spine, pelvis and 1 single tumour in my liver. I had AC chemo which I finished in March 06 and have been on Tamoxifen and monthly Zoladex injections since then. I also have Pamidronate infusion once a month for my bones. I had Radio Frequency Ablation in August last year for the tumour in my liver and so far there has been no regrowth of the tumour. As many it is such a shock to get the diagnosis and it took a while to get my head round it all. I found this site so helpful as for some reason I totally lost my self confidence (what little I had) and even going to the shops use to scare me silly.
Life goes on and you do manage to start functioning again somehow - yes, there are still ups and downs, good days and bad days but I just try and go with the flow and not beat myself up when having a bad day.
Jetty :0)
Hi All
My name is Dawn, I am 39 years old with a daughter who will be 4 in December and a little boy who will be 1 in November. I thought I found a lump in my left breast at the end of my pregnancy, but stupidly ignored it, and then when thought about it again, it seemed to have disappeared. Then in June 07 found a lump in my right breast and it felt quite big to me (only got little boobs), so rang docs. Had to wait for routine appointment, 5 days, and the doc thought it was fibrous tissues, but referred me to be sure. Went for mammogram, ultrasound and FNA on 9 July, and then went back week later on 16 July to be told had bc. Was told would def. need mascectomy on right, and possibly left. Wanted to do core biopsy that day. Had core biop on right breast, but another ultrasound on left as they weren’t convinced for that, as FNA and mamo showing something, but ultrasound didn’t. Then had an MRI Scan on 18 July and CT and bone scan on 20 July. Were due to get results on 30 July, but after a lot of ringing and emails to macmillan nurse as stressing me out with waiting, we got to see another onc on 26 July, when the double whammy hit telling us had already spread to my liver. Surgery went out the window and started chemo on 8 August. Am on FEC x 3 and taxotere x 3 and then Herceptin I think for one year.
My whole world fell apart, and my main fear is not seeing my babies grow up (got me bluibbing again now). I feel so angry and scared at the same time and keep asking why me. I have been very positive most of the time, esp. since chemo started, but having a few rough days at the mo.
Got onc on 12 and going to ask about ablation and whether possibility (did say I had 2 small tumours). I have no idea what grade or size my tumours are anywhere, and now scared to ask.
Life is pretty normal most of the time, my 3 yr olds social life has to be kept up with and little Jack tags along as no choice.
Sorry for rambling.
Love
Dawn
xx
Hi all!
Diagnosed March 2005, had mastectomy but within a few weeks scans showed spread to bones. As I am ER+, PR+, HER- had tamoxifen then letrozole also pamidronate then zometa. Liver and lung mets confirmed Dec 2006 and had first ever chemo FEC. Had good results, lungs cleared up and tumours in liver responded well but unfortunately not for long so am now on weekly taxotere.
I’m 36, married, no children, live near Glasgow. As time has went on I have found my new normal, life is still scary but don’t have that panic sinking feeling when I wake in the morning. Off work at moment but have managed to still work part time for the majority of the time since dx.
Love Twinkle xoxo
Good idea, Jenny.
My name is Anne - the user name Christay was inspired by my middle name Christina. I am 55 years old, divorced and work as a primary school teacher. I live near Stirling and have one son who is 33 years old and lives nearby with his partner and her 14 year old daughter. They are expecting a child in March. I was diagnosed DCIS in August - the letter was waiting for me when I came back from holiday. I had a mastectomy on Monday of this week and got home on Wednesday. The hope is that it was so early that I will not require further treatment but will not know for sure until I go for my follow-up appointment in a couple of weeks time. In the meantime my GP has signed me off work for 4 weeks.
God bless.
Christay
Hi
My original diagnosis was Oct 2003 and I had a mastectomy with axillary clearance. I had no node involvement, had radiotherapy ,Zoladex and Tamoxifen, which was later switched to Exemastane. I also opted to have my ovaries removed in July last year. I was diagnosed in Oct last year with lung secondaries and have had chemo and am currently on Arinidex. I have 3 monthly CT scans, one due next week and tumour markers checked. At the moment my oncologist tells me that everything is stable but I always seem to feel breathless and my chest tight before scans.
I work full time as a famlily law solicitor, have 2 teenage children for whom this has all been very difficult and a supportive husband who I think has actually found it harder to accept the implications of a secondary diagnosis than me.
Generally however we simply get on with life, running and doing charity walks, planning holidays and stressing about GCSEs !!
Best Wishes to everyone
Hi girls,
My name is Suzy and I feel like an imposter as I am not 39 anymore, although I was when first dx in March 2005, I think I should change it, so if I suddenly disapear I will come back at but as Suzy1965 which sounds more like me anyway!
I had 2 tumors removed, one Grade 2 the other grade 3 and 3 lymp nodes as well, had 8 months of chemo then a double mastectomy as I was sure I never wanted to go through chemo again and the surgery looked more appealing than the 6 weeks of rads (it was supposed to be during the school holidays!) I seemed to spend most of 2006 feeling v. tired and thinking it was just the getting over chemo and then had a siezure in the November during my sons last basketball game. My children and probably half of the school can do a very good impersonation of me spinning around and around and then hitting the floor face down, had some great bruises that even impressed my sons! Anyway… I had 10 days of Whole Brain Rads after they found another tumor on the other side of my brain, it did shrink in half with the rads and hasnt changed since. So all is pretty good. Im on the usual cocktail of drugs, zoladex, zometa as my osteoperosis isnt good since chemo and am just changing from tamoxefin to faraston because it makes me feel revolting. (well, think its that).
I have found this site to be great and to know that so many of us are out living the medics predictions is very encouraging. I have good days and then some not so good when all I want to do is sleep, and then I feel like Ive wasted it! (still trying to “get my house in order”) without letting it consume me. And trying hard to enjoy every moment with my kids, of which I have four 17,15,13,and 8. and a loving husband who finds his life riding my emotional roller coaster too. Well, I think Ive taken up enough space. Oh I didnt mention that I am an Aussie from Queensland, and dont worry Its freezing here at the moment! Love to you all and thank you for your posts in the past.
Suzy39 soon to be Suzy1965
Hey all
Think Im one of the babies (kind of) of the secondaries board, Im 30 dx in July 2005 at 28, dx with Secs in bones (spine and sternum) June 2006. Im ER+ HER2 - Currently on exemestane and those biophosphante thingies…oh and lots of Tramodol for back pain and for the sheer fact they make me smile! Woohoo!
Im orginally from West Birmingham but have live in west London for near 8 years. I work full time, I no longer kickbox or play football which has annoyed me more than anything in the world! I was in a relationship but the whole cancer thing took its toll and well that ended that BUT i live life to the full go on LOTS of dates and go out clubbing cause i love dancing (not jumping about too much though) i live at gigs and festivals and I always find the amusing side of everything espeically when ive had tramodol and a drink! 
Ive decided if im going anywhere its going to be with a bang and kicking and screaming cause im a fighter, yeah i have my bad days im human but i see the bigger picture now with everything and dont worry about money, relationships, work blah blah and try to drum this into my mates who I adore along with my family (all 3 sisters have the BRAC2 gene)
Im a member of the Gobby Gang on the younger womens forum and am mates with 5 lovely women we lost one member in May the lovely Moira, who would have been 40 at the end of this month so the gobby gang are going out in London to get drunk and celebrate Moiras 40th in a way she would have approved of!
Love to all Lynnc x
Hi all,
I’m jacquie and don’t like my username any more! I just couldn’t think of anything else when jacquie and all it’s variations were already taken.
I was diagnosed at the end of march, with a single lump and only a trace of stuff in the nodes. Had WLE. Under the microscope they identified it as stage 3, and I started chemo at the end of April. Within a couple of weeks I’d had a liver scan and found I had a liver secondary, right in the middle by the bile duct opening. Bones and lungs clear. I started on FEC and we quickly realised it was seriously mucking up my immunity - my wbc just wouldn’t recover even with the bone marrow boosting injections. They scanned me after I’d managed two cycles of FEC, and there was a little shrinkage. By then they had the results that I was HER2+ so swapped me to Herceptin and Taxol. I’ve been having this as a small dose every week (what a total drag!) and am now halfway through. I had a whole body CT scan this morning (results Monday), to see if it’s shrunk and check nothing else has cropped up in the meantime. They are hoping to change me to a three-weekly cycle if my bloods are back up by Monday.
My hair came out on the FEC, and I’m using a combination of scarves (at home and among friends and in windy places!) and a very sleek wig (not at all the scruffy ‘au naturel’ look that i’ve had for the past 10 years!). I am lucky to have a v supportive but shell-shocked husband and have 3 children aged 9 - 17. I’m 44.
I work part-time but have been off since April. This treatment seems endless, and I can’t go back to work even though I feel really well a lot of the time, as I work with kids (disabled and in mainstream schools, which i have to visit) - too many bugs.
I veer between thinking I can put the future out of my mind and just get on with living normally for several years, and being overwhelmed with the gravity of it all, and wondering how on earth I can prepare my family for my ultimate disappearing act.
There’s a brilliant day hospice near here with lots of kinds of info and support, but I’m not really ready for more than the odd contact at the moment.
Lovely to meet you all (tho cr*ppy circumstances i must agree). I’ve written you all on a chart so hopefully I’ll recognise you when you write again.
By the way, when people’s messages have ben edited, what’s been taken out? Is it identifiying things like names of your kids, or has your message just been shortened? Surely you weren’t swearing that much!!?
Warmest best wishes
Jacquie
Hi, I’m taking a break from the forums but popping in to say Hello…back soonish.
I was diagnosed with both breast cancer and bone mets in 2003 when my hip fractured as I was walking home from work.
I had a very succesful hip replacement and was started on Tamoxifen and bisphosphonates with a monthly jab to stop my periods. (I’m in my 40’s and pre-meno)
Tamoxifen worked well for just over 15 months before I was changed to Arimidex.
I’ve been on Arimidex since Spring 2005 and so far it’s working well.
I’ve kept well and I’ve had no progression.
Much Love and Best Wishes to you all…Belinda.x.x.x
Hi Jacquie
I assume you’re referring to my post when you ask about the editing. Please let me reassure you that I hadn’t been swearing - how can you think such a thing about little old me??? It was actually me who edited it because after I had posted I realised I had made a mistake - can’t really remember but I think it was a spelling mistake. So don’t worry I didn’t say anything that the Moderator considered inappropriate!!
God bless.
Christay
Hello everyone,
I have only been using this site for the last couple of weeks and it is good to be able to chat to people in the same situation.
I had breast cancer 10 years ago (age 28) which had node involvement. I had lumpectomy with axillary clearance as well as chemo before and after my operation. Then I had 5 years of Tamoxifen and Zoladex for 2 years.
All was well until June of this year when I was told the cancer was back this time in my bones and lungs. I am now having toxatere and have number 5 next week with my scan on 18th, I will not find out if the chemo has worked until after my scan. Waiting for results is always a worry. I have no idea if I am HER1 or HER2 and am yet to find out if I can have Herceptin.
When I was diagnosed I was in total shock, I had my annual check up in Jan and was told as I had reached the 10 year mark of being cancer free there was a good chance it would not come back. Then in June was told it was back and that I could not be cured. A bit of a shock. BUT I am keeping positive and I am going to fight this all the way.
It was very sad news about Jane Tomlinson, she was a great inspiration to all us ladies with cancer. She was told she only had 6 months to live and fought it for 7 years. A great lady and as I say a real inspiration.
Fay :o)
Thanks Christay,
I didn’t realise that was what it was - I thought the moderator was editing them. Thanks for clearing that up.
Jacquie
Oops - sorry for butting in. Didn’t notice that this post was on the secondaries forum because i was using the page showing all discussions. Still it’s interesting to see who’s who.
God bless.
Christay
Hi Jackie, Dawn & Jenny,
I too have liver mets. I had symptoms of gall bladder problems went to the GP and she booked an ultrasound for a months time. In the meantime I found a large lump and had a WLE on July 2. After discharge I didn’t really get back to normal. I went for the US and thats were they found the mets. I was told by myself by the Gp which was probably the most devastating thing. Referred quite slowly to see the ONC, who put me on Tamoxifen whilst she went on holiday as i was ER+. After 2 weeks I was bright yellow and had a stomach that looked pregnant! Called the hospital and was admitted immediately. I had a PICC line inserted and started on chemo EPI & 5FU continous infusion. They also started water tablets etc, these have all been stopped now I now go weekly for my EPI and the change the 5FU which now my blood results are improved will be increased. My hair is coming out think and fast and got my very glam wig ready for wedding next week! The ONC is now starting to talk about the next line of treatment (hormones) so I’m feeling reasonably positive this week. Back in August I didn’t think I was going to be here to celebrate my 10th wedding anniversary in November. Jenny its lovely to hear you are doing so well, it gives lots of hope for the rest of us.
Anyway I haven’t said much about home life, married to J for nearly 10 years, no kids but have a lovely cat called Cindy who rules the roost around here. We live in North Wales but hubby works in London during the week, Mum & family are not too far away. I have been running my own business since 2004. I make & sell chocolates!! I am very lucky as i have staff to help me and at the moment can manage 2 days a week to keep every body in line!
This is a very long post so beware!!!
I was diagnosed in April 05 with huge tumour - 9 x6 cm and 5cm one in lymph node - my GP had been treating me for mastitis so delay in getting diagnosis.
Had FEC x 6 then mastectomy and found rhat although during chemo the tumour had shrunk to almost nothing, it regrew back to its original size in the 4 weeks between stopping chemo and having surgery in sept 05. 18/24 lymph nodes affected. ER and PR neg but Her2++++. 8 weeks later developed skin mets about 5cm above mastectomy scar so had 5 weeks normal rads plus rads to neck line and extra week of booster rads. Started herceptin oct 05 and been on this ever since. had taxotere between dec 05 till march 06 but very poorly each time with it.
May 06 developed hip pain which was excruciating but nothing seen on bone scan or xray. August 06 found new lump in armpit on other side which showed it was cancerous.Had been breathless since diagnosis but despite loads of scans, xrays etc, it wasn’t till sept 06 that widespread secondaries in lymph system of lungs, small liver met, and huge met in left hip (both the socket and the joint) plus T5 was discovered. Told might live only few months and at that point felt that was true as so breathless I couldn’t get upstairs in one go and could only manage really short distances with wallking stick and couldn’t drive as couldn’t lift leg up. Had vineralbine IV which worked almost immediately in improving my breathing plus started zometa for my bones. Had one dose of rads to hip and now hip pain minimal and have near enough normal movement and leg is now back to almost same length as previously.
Was only off vineralbine for 8 weeks when my breatlessness returned and scans showed that liver lump had regrown as had lymph ones so started capecetabine in end of march and again told I would be very poorly in august but still here. Breathing improved initially but then worsened again and have been on steroids now for 6 weeks and breathing better. Had bronchoscopy this week but report conflicts itself so seeing chest physician next week for proper result but know my left lung is badly fibrosed from the huge doses of rads and have ‘critically small’ airway somewhere in my right lung but not at main entrance and may have partially collapsed lung but as I said report was unclear so will probably re-edit this after I’ve seen consultant.
Plan is to stay on capecetabine for as long as possible and hopefully then will qualify for tykerb.
Saying all the above makes it sound as if I am feeling really ill but have had fantastic summer since starting steroids as now can stay awake all day and have energy and the breath to do things so 2 weekss ago, i went up to Tintagel Castle and down to merlin’s cave and jumped across a stream, next day went all round Lost Gardens of Heligan and following day to a children’s adventure park where I had great fun on the water rides!!!
Have 10 yr old twins and a 7 yr old and a hubby who is finding it increasingly difficult to cope.
Get care and support from the hospice which has really helped.
Also, a member of the Gobby Gang and really miss Moira and some other women that I used to post regularly to who have all been taken by this disease. Find these forums really help me and been on Younger Women’s weekend and Living with secondary cancer courses run by BCC which have been invaluable and going to attend the Secondary task force meeting in London in october.
Right - now I’ve bored and frightened you,I’ll move on. I hope the profiles come back soon as it is helpful to know where people are along the line when replying to posts so thank you for starting this thread.
Hi
Just to add my profile it would be good if they had a database of profiles…
Diagnosed2001 had mastectomy on CMF and rads went onto tamoxifen… 18n months later had reconstruction. 2 years ago secondaries found in sternum went onto bisphosphonates and capecitabine… worked well then last August dx with liver secondaries went back onto capeciabine but didn’t work… tried hormone exemestane tabs didn’t work… liver getting worse…Now on voinorlabene 2nd cycle awaiting tests to see if working. On massive steroids which keep yougoing and also pain patches…able to go to work and have all night parties the trouble is the roundabout keeps going and no-one lets you off!!
Am age 57 -2 boys 38/36 with 3 and half grandchildren lovely hubby who looks after me the house and garden!!!
I live in the westcountry and my health team and hospice are great and give me every support… emotionally , medically , financially (benefits).
It’s lovely to meet you all and it is a great site to ask questions and get some answers.
Wisdens
Hello,
A number of you refer to the gobby gang, what is it and can anyone join?
Fay :o)
Hi
Great idea Jenny - it’s really difficult to keep track of “who is who” without access to the profiles.
I was diagnosed 5 years ago - mastectomy, immediate breast reconstruction and then FEC. Initially on Tamoxifen but then switched to Arimidex. Some problems (including lymphoedema) but basically did well until May this year when large liver secondary found. Originally told it was operable but then MRI showed it was too close to the portal vein, so am having 6 cycles (18 treatments) of Taxol and Avastin (weekly for 3 weeks and then 1 week off), in the hope that it will shrink enough for a liver resection early next year. Am due to be scanned again next week, so am getting quite stressed again about it all at the moment! But the chemo is going reasonably well with side effects pretty well controlled - funny to be without hair again though.
Am trying to juggle the weekly treatment with work and family and not always getting the balance right. I’m 51, married and with a family who try to be very supportive (and usually get it right!). 3 children - 26, 22 and 20 - and 3 cats, so it’s quite a busy household when all are at home. I work as a speech and language therapist with preschool children, in a specialist provision attached to a mainstream nursery - great job and very rewarding! I have reduced my hours this term to just 12 a week - and am trying not to worry too much about infections. My oncologist is very supportive about me working and seems to think the mental/emotional benefits outweigh the risk of infection. I do take my temperature a lot though!!
Am also a very keen long distance walker - walked Hadrian’s Wall (84 miles) over Easter for charity and was trying to complete the North Downs Way (Farnham to Dover) in stages this year. Only have 40 miles to go to Dover but going up hills now is very very slow, so I’m not sure we’re going to be able to do it. Still trying to walk when I can though as I find it very therapeutic. Also have taken up yoga.
Enough about me. Keep on posting, everyone - I have found this site such a support. Are lots of you going to be at the Secondary task force meeting in London?
Kay