awww Dulcie thats pants hunny.... hope you dont find the capecitabine too hard going andthat it zaps the squatters.
sandra im loving the olympics too... cant survive without my daily fix and isnt it weird how we all suddenly are experts in everything from dressage to tai kwon do.... lol.... hope the chemo is going well.
Hi Dulcie, I'm so sorry to hear your news, it's a tough one to get your head around. However, don't go throwing that lucky leather jacket away! I wish you the very best of luck with Capecitabine, let's hope it nails those critters!
Hope you join us on this thread, you sound fun!
Sorry to hear that it's spread to your lungs.Hoping the capecitabine will be successful for you.
Hi to everyone
Hope your doing ok.
Enjoying the summer weather- hopefully dry in your area.
And enjoying the Olympics too. Team GB doing really well.
I had chemo again last Thursday, ( avastin), I'm doing ok.
Will check in again next week, n keep on keeping on.
Luv Sandra xxx
Dulcie, I'm from the may 2012 chemo thread but just wanted to say so sorry to hear the spread to your lungs. You are always so cheery and funny and make everyone laugh with your comments - its just NOT FAIR!!!!! I hope the treatment offered to you is successful and puts the little cancer buggers on ice or wipes them out for good. Sending you big cyber hug, (((()))) love Em Xxx
Hi Ladies...i got the bad news today..even though i was wearing what i hope to be my new 'lucky' leather jacket! Not to be ..its in the lungs ..just as i thought it might be! So my rads have been reduced from 25 to 12..i think with a couple of classes to go to...
I will be on oral chemo indefinatley ...Capecitabine ..at the same time as the rads....
Today was the first day too..that i had the 'guts' to go without anything on my head! I whipped my wig off in the taxi..and thought go for it girl..even though i have got a 'growing' fast cyst on top of my head...should i give it eyes and a mouth..turn it into a 'feature'...
Haven't been on recently as have been surffering quite badly with the SE's of the chemo. Feel like a zombie most of the time. The SE's are definitely getting worse as time goes on.
I was really sorry to hear about Jo and send my condolences to her family. It's so sad when another one of us is no longer there.
Sorry to hear Sadie is still having problems.
I hope everyone else is doing ok and trying to enjoy the summer as much as they can.
Thanks Lulu... I am on Facebook just for the Metaplastic group..I have read soo much on Metaplastic that i cannot remember any of it now! but i have saved stuff for need to know...later.. I am still in denial ..well thats what helps me to get through..i think someone here was asking about Lorazapan..in the US it's called Ativan...i take them to help me sleep...been taking them for years though..
Thanks for wishes for Tuesday....thank gawd for Lorazapan..lol
I am soo sorry about your dear friend Jo..bless her babies and family x
iv not been on so much recently as life has been taking over but i was saddened to read of Jo-Hopes passing.... she was so worried about her kiddies, im glad she got to have some good times with them.
Laurie hoping everything goes well for you.
sadie sorry your having continued problems but hoping they get the epidural right this time and it can really make a difference.
Dulcie please feel free to join in.... we have a very ralaxed door policy here!... fingers crossed for good news on Tuesday.... louise who sometimes posts has metaplastic bc too but not got mets...... i think there is a metaplastic FB group too although mostly americans but if your on facebook you might find it helpful.
hi Jules hope treatment goes well for you.
much love to Sarah, Tara, Lorna, Moondog, Rawlie, lav lass and everybody else iv forgotton.
Good evening ladies..i post on another thread..but i came across you all two days ago! So i'm a 'new' lurker! You are all just amazing ladies....doesn't it help to have a sense of humour? sometimes mine is black... i have just defrosted the freezer..doubt i will ever have to do that one again!
I am Trip Neg Spindle cell ..Metaplastic..i had to EC chemos that didn't work..but lost my hair anyway..had max in July with lymph node clearance plus some muscle removed ..now waiting for Tuesday to see if it's in both lungs...My partner has also taken ill...and having tests..so he can't even give me a massage etc... i won't butt into your thread ..but i will read it ...you all deserve gold medals..i take a bow to you....
Laurie, thanks for the update about Sadie. Let's hope the epidural deals with her pain.
Juls, welcome. It's always good to hear from other triple negative ladies, if you know what I mean. If 1974 is your year of birth that makes you 38 like me. What treatment are you on?
Moondog et al. Emailed sadie and she is ok but pain from metalwork in spine and getting epidural before she starts on Xeloda soon. Her mum has also had her second chemo and didn't need to go into hosp this time. As with many of us she is still finding the site difficult to negotiate so hasn't been on much.
Saying a big hi to all the ladies on this thread. I was diagnosed with secondaries in march 2012 in the liver and skin mets too,triple negative also. Wishing you all the very best with your treatment. Xxx
Laurie, I think a photo of you in gimp mask would be perfect for your profile picture. So pleased to hear that your getting on ok and had a good time in London. Hope you've stocked up on Jade Jagger ....... whatever.....!
Sadie, please let us know how you're getting on, I've been thinking about you.
I've been up in Shropshire with my lovely brother and sister-in-law having tough conversations about "when I'm gone". Also had lots of fun times with the children.
A few of us are having interesting thoughts on the Dispatches/Panorama thread. We're thinking about forming a pressure group. Come and have a look.
Sandra, Tara, Rawlie, Laura, Christine, lots of love to you. Laura, well done to your son, fantastic achievement.
Love Moondog xx
Back to wifi tomorrow so still eating into my 3G allowance here in trendy Notting Hill (woooo Jade Jagger has a shop on our street that sells - well we're not exactly sure what it sells LOL!)
Last day WBR today and will probably have toscone down again for the day next week to get drained again (I'm not rocking the Moominmama look!) thankfully noone has asked when I'm due!
Went to see Spamalot with kids which was fun and enjoying the Olympics. Off to catch up with a couple of mates for coffe then kids have been told they can watch me being strapped into the gimp mask for last treatment. Weird teens! My daughter is planning to turn the mask into some kind of artwork! Ah, my little Damien Hirst!
Hope all are ok. Whatcha up to Sadie? Worried you haven't posted unless of course you're just chillin
Hi all just want to say poor jo funeral is the 3rd aug sorry don't know time but she will be in my thoughts hope y all ok also just a little update on my son sky dive tomorrow he's raised nearly 2000 with works donation for the royal Marsden thanks to all who sponsored him tc Laura
Such sad sad news about Jo-Hope, my deepest sympathy to all who knew her and of course her young family. RIP Jo xx
Laurie sorry yr having such a tough time, thinking of you, good luck with all treatment . X
Sadie - how are you? Haven't seen yr posts on here for few days, hope yr doing ok, hugs.x
Hi to everyone,
Keep on keeping on
Luv n hugs. Sandra xxx
I didn't know Jo but condolences to all of you who knew har as well as her family. So sad. It just brings it home to me how awful this disease is.
alesta - sorry things have been so difficult for you lately. Thinking of you.
Omg i was dreading this news poor jo we spoke now and then I emailed her but never heard no wonder poor family children friends all are all thinking of u rest in peace poor jo no pain now love to all laurie so sorry to hear y news talk more when I can face it Laura x
I met Jo at the Penny Brohn Centre in 2010 and we kept in regular contact by email. I rarely post on these boards now and am sad to be telling you that Jo died on July 23. Some of you will know that she had taken a turn for the worse and although her strength kept her hoping for a turnaround, it was not to be. Jo died peacefully at home with her family. She'd been in the middle of organising for her second-to-youngest to start school in September and had recently helped her toddler celebrate his second birthday.
"Bravo Jo, it was tough but youdid fab. Now rest."
I didn't talk to Jo on these forums; perhaps someone could let me know if there's another thread she also posted on, or otherwise pass on the sad news. Much love to all of you.
Laurie, I'm so sorry to read your update...you're one spirited lady, good luck with all the treatment lined up for you.
Another who has never gone through Hollister's doors..might one day, with a torch in hand. All the best, with love..xx
Sorry to hear that you've had a rough time, but good to know that things are now in hand. All the best for next week, I imagine that it will be a huge relief to get the fluid drained.
I haven't dared to go into Hollister since seeing two men outside the Westfield brach wearing nothing but tiny trunks and sunblock. I assumed they were employees.
I was lurking on the US site and saw you were in a spot of bother so PM'd you yesterday, but they never work for me, so the thought was there.
Love Zoe xx
Hi TN's et all. Couldn't get on the past few days though just as well as I was close to killing somebody. So here's the update - it's long and it's all about me - but if you feel the need to have a little snooze during the tome - go right ahead!
Last week CT liver and MRI brain. On the way home, the lovely reg calls to tell me one of the occipital mets is bigger - damn have i already told you all this before? Chemo brain - stick with me! Anyway upshot is, start dex and they see me Monday.
Monday's results show things not working on Xeloda (biggest met up to 2.7cm and some cirrhosis and ascites - but normal LFT's!) so bye bye princesses, crocs with socks lotions, potions and hello normal shoes! On the ball team managed to get me into see the radio onc on the same day and also to organise mask fitting, so back down to London for mask which my daughter wanted to film for youtube! The radio guy wants me to take 8mg dex. 8mg! at that dose I'll either kill someone or have my entire house painted by the weekend. We negotiate - 6 - no I'll take 4mg and take my chances - so we settle on 4.
Managed to get the nice reg to look at my abdomen again as I have put on 10lbs in a week and it's wall to wall ascites with no room for food and barely any for drink, not to mention absolutely nothing that fits me. She said they could drain me on friday but that means another trip so I've gritted my teeth to hold out to Monday. So early appt monday for ultrasound and probably drainage, maybe staying in overnight as my BP is generally low (90/60) and there' an awful lot of litres in there. They will take me down for my brain at 1600 though and I have it every day until Friday.
She said the ascites may come back until I start my chemo but just need to get some of the fluid off. They have applied for Eribulin and hopefully start after brain on 13th. So bye bye hair again and hello sweaty red forehead! Had to go trawling to cheapos (Primark, Matalan, Asda for huge pants and tops to cover the blubber - thankfully sales on so didn't feel too bad buying stuff I would not normally buy in sizes I didn't know they went up to 😉
A friend who lives in central london has very kindly given us a loan of her flat which she was just about to start renovating so we can go down from Sun - Sat which is fab. Also managed to get some free tickets for Hyde and Victoria Parks where they are showing olympics on big screens on a couple of days. We are also near my step daughter so will be nice to see more of her too.
Knackered after yesterday when my 12 year old wanted a drag into Superdry / Hollister on Regent Street in 30+ degrees! Then she bottled it - "But mum we can't go in, we're not cool enough" Have I taught her nothing - they don't care - they just want your cash! 10 mins later and after having to take stuff to the door to see what colour the damn tshirt is, we've bought 2, one for her and one for her brother but mostly she is excited to have a superdry bag she can take her trainers to school in (((Argh - my daughter may be turning into a clone)))
So while not feeling exactly positive, the steroids ativan zopiclone have allowed me to slip a little into denial and managed to get some sleep. Went into work for a couple of hours today and just have a few things to finish up tomorrow - all helps keep the dreaded half-pay at bay.
Love and hugs to all - PS Melissa, I'll pm you as imagine I may be languishing on a ward on uesday if you're having chemo that day - would be nice to say hi
Hi everyone, hope you're all enjoying the sunshine.
Wellmeant, I too had my treatment (Carboplatin) delayed because of low blood count. I asked whether there was anything I could do to boost them and was told not, that I just had to wait and they'd increase. Anyway, I googled it and it looks as though certain food helps, green leafy veggies, dried apricots, fruit, almonds...... Does anyone else have any suggestions?
Sadie, how's it going? I hope you are feeling better and that your strength is building up again.
Laurie, sorry to hear about the progression and the steroids sound grim. They make me very jittery and depressed, it's one of my biggest fears about tax. My reflexologist suggested that I ask for lamazepan (??) to counteract the effects of the steroids. Anyway, I hope you manage to get out and about in the caravan.
Tara, pleased you had a good time with your guests and that you're enjoying some treatment and doctor free time.
Over the last few days I've been hearing very encouraging news about immunothrepy in the States and the UK. There was an interesting piece on Newsnight last Tuesday which my friend told me about and I just got to see on Iplayer. Also there was some discussion about it on the American discussion board. Has anyone else heard anything about this.
While I was lurking on the American site, I also saw very encouraging posts from triple negative women who were still doing well after 4,5,7 and 8 years!
Well, I'm off for my third carbo on Friday and then a scan in a couple of weeks. In the interim, I'm making the most of the good weather and tending to my jungle of a garden. It's tiny, but I've cleared bags and bags of weeds.
Hi to Lulu, Christine, Laura, Rawlie, Val, Sandra, big hugs to you all and anyone I've forgotten.
Hi all on phone so can't update to all hope everyone is ok Tara sounds like you had fun time enjoy chemo break sadie sorry to hear your been poorly hope u pick up sn lulu hope joa moondog hope y ok and everyone else I forgot hope the sun is helping everyone recovery it's been hot here a bit to hot 32 tomorrow phew better than rain I spose I'm doing ok still plodding on mt next scan is 8th aug so fingers crossed my son is doing a sky dive on 2 nd aug for the royal Marsden hope the weather is nice if anyone wants to read he's story pm me ill send u he's link many thanks love to all Laura xx
Hello ladies haven't posted for a while. Em my wife is on cycle 3 GemCarbo unfortunately on the 13 days between her cycles her blood is dropping too low and every cycle has had a delayed start. She has been on Filgrastim but has started to react badly to the drug ie severs breathing difficulties after her last injection so it has been stopped, Has anyone experience with this and are there alternatives she could have to boost her marrow etc.
I'm now free of visitors as the second friend cancelled. Had a great weekend at the River festival here in Bedford. Finding somewhere to sit down was easy as the weather was dry and plenty of grass! I think summer has arrived yippee.
I'm enjoying my break from treatment and doctors. Gradually getting my energy back though it is taking time.
Love to you all and hugs and thoughts to those struggling with worry, pain and side effects. Will send any surplus energy your way. Keep on keeping on.
Sadie, sorry to hear about yr inf in Hickman line, get well soon, big hugs, xxx
Laurie, sorry to hear about yr brain mets, sending you big hugs too,xxx
Christine, glad to hear you've finished yr chemo, good luck for ct scan,x.
I have been on AC, 2 yrs ago when I was first dianosed had 6 lots of it. Did feel very rough on it, but it did shrink my mets. Then I had masectomy, then taxetore x6 before 3wks of radio.
Been on paxi/avastin since last July, but came off paxi in nov cos of infection in finger nails. Doing ok on just avastin, s/e s v minimal, hair grown back too. 😉
Hi to Jo Laura lulu LLass Tara thinking of you all, n everyone else I've missed , xxx
Keep on keeping on,
Haven't been managing to post so much theses days. Have been very tired and stressed and been trying to do a bit of relaxation.
Rawlie - glad to hear your CT scan was good news. Unfortunately they can't tell you more about your liver but hopefully that is going to be good news too.
alesta - Sorry to hear that one of your brain mets has increased and hope that gamma works for you and dexamethasone at least gives you some relief. The down side with dex as we know is being wired which is why you're up doing housework during the night and I'm sitting at this computer at this time of the morning! Hope Zeloda continues to work for you and you manage to keep working. I've set my goal for returning to work on 4th October. I'll only be at work for one day and then I'm on annual leave for 2 weeks. Then I will be on a phased return over 4-6 weeks. That's providing everything goes OK with my last TAX tomorrow and my CT in a few weeks time. Hope you get away in that caravan some time soon!
Sadie - sorry you've been so unwell. Hickman lines have a habit of being the start of infection. I used to work in a haematology ward and we frequently seemed to have patients needing to have them removed. Hope you start to feel better soon.
Tara - hope you cope OK with your visitors!
Sorry if I've missed anyone. Regards and best wishes to all.
Sorry to hear some of you are having such a rough time at the moment. I don't manage to post as often as I would like because of the chemo wiping me out, but I do have a look from time to time to see how everyone is doing.
I have just had a CT scan after 6 weeks on Taxol and Avastin and the good news is that there is a definite reduction in the lungs and the lymph nodes. They couldn't be sure about the liver as the mets are so tiny and difficult to see. But all in all it's positive news. It gives me the strength to keep on going and I am now set for another 6 weeks of chemo and then another scan. The SEs are pretty rough and the oncologist said that they will continue to get worse but I find that as long as I rest enough, it's doable!
I also have teenage children and I have been very open from the start. It makes life much easier because you don't have to worry about what they do or don't know when you are talking to others. I do try to be as positive as I can about the future for their sakes, although it can be hard sometimes when you have a down day.
Anyway, wishing you all well.
I'm running on a mix of chemo and dexamethasone so if this post makes sense, I'm less wired than I thought!
Sadie, Hope you are getting better day by day. I know that feeling of lying down and watching the world go by as the other 3 in the family get on with life as if I'm not there... Good to know they can cope but so sad to see. If I'm lying snoozing on the couch, we have an open archway through to the kitchen and I can see them going about their business, sitting at the dinner table, talking about the day... I try not to let my thoughts run away with me.
Lulu - that chemo brain work thing is such a pain in the first few weeks but sure you will be back into the swing of things soon and I was going to say, so nice to talk about something other than cancer but guess it goes with your territory! Different adult company is always good though.
Jane, I didn't have AC but feeling rough and then perking up sounds par for the course with most chemos. As to how long your mum has got. it's personally something I have always avoided asking about. I find a day at a time is the best way to take it and because our cancers are all so individual it is so difficult to predict. If your mum want's to know that's one thing but if the family want to know and your mum doesn't then i'd have a think about that as you might start treating her differently subconsciously and she might start thinking she's on her last legs 😞 Can't remember where your mum has mets but i know of an American lady with bone mets who survived 20 years!
Tara / Laura / Chris hope things are going well and you're enjoying the good things that life can throw at us in the rain.
BB - re: kids. My kids are were 11 and 13 at diagnosis and I have been very open with them and everyone I know. I live in a small village and found it best to tell everyone the same thing so there are no rumours going around and stuff being fed back to the kids. They know I have a cancer that can't be cured and that I am likely to die before they are adults. However I have emphasised the treatments available and tht we will take things one day at a time. They know when I am going for scans and I always tell them the results and what's going to happen next. Sometimes they are a bit concerned and we have a bit of a cry but mostly they seem to be doing well and going about normal teenage stuff and being stroppy (and I wouldn't have it any other way!) Don't know how old your kids are bt I did find it very useful to have a couple of sessions on my own with the psychologist who is attached to the oncology department who gave me some top tips about how to approach them.
Jo, Hope you are getting lots of pain relief and supprt from the hospice. Please post a wee update if you're feeling up to it - we're all thinking of you and hoping you're feeling more in control.
Moondog, Hope the chemo is working. Tax is indeed hell on earth for some people but if you do have to switch, you may be one of the many lucky ones who sail through. There is a good long thread, 'need positive posts about TAX' started by Supertrouper last year in the chemo section which is worthwhile reading through if you end up down that route. Gpd that the psychology session and reflexology went well. I should try some but have never got round to it and my feet are currently yuk with the Xeloda.
Me: Brief update. Had brain MRI and liver CT at the Marsden on Monday. Have been having an increase in migraines and the reg called me in the afternoon to say one of the occipital mets had increased in size and was probably the thing causeing the problems so could I start back on dexamethasone. We negotiated down from 8 to 4mg per day and I'm still a bit wired - cleaning until 2 am sleep by 4 and up at 6 - at least the housework is getting done.
They are hopefully going to arrange for me to see the radio onc as well as my regular onc on the same day to see if they want to zap it with some gamma - typical for this to happen when I have a caravan outside raring to go... Hoping the Xeloda is working on my liver as it's a pretty doable chemo and I'm able to work through it with mostly minimal SE's.
Anyway, we will see what Monday brings...
Love and hugs to all and apologies if I've missed you out!
awww sadiepops sooooo sorry you been unwell again..... hope now you have the hickman out you will no longer have these trips to hosp..... glad your feeling a wee bit stronger now and hope mum is getting on ok too.
tara hope you enjoy your visitors and dont tire yourself out.
moondog loving your new profile pic too... glad you had a good time in wales.
moser.... we are a bit of a rare breed... think i read the chance of recurrence in the nodes in the chest wall is 1 in 1000... only 1 in 4 people actually has these nodes apparently.
Jane sorry im not much help as didnt have AC and dont get DLA although my daughter does but that for something else entirely but im pretty sure that macmillan can help fill the forms in as they are about 40 pages long.
LL thanks for your kind words.
i am taking it easy at work... only done 3 half day so far and just sticking with paperwork for a few weeks but its a great feeling to be back and actually using my brain (chemobrain) again. got my annual breast mri on 23rd aug which is the anniversary of last diagnosis... hoping thats a good omen.
Hello from another Lurker - I follow this thread and "know" some of you from other threads so I hope you don't mind me popping in. I just wanted to say sorry you have been so unwell Sadie, really hope that you are now getting better. Lulu, I am so glad you are back at work - I was talking about you to my surgeon (had my 4 year check up to day). You and Moondog are the only others I know who have had recurrences in the pectoral muscle and lymph glands around it area (although I am not tn). He was really interested as mine is the only case he has seen. Moondog, I hope that the chemo continues to treat you well, and lots of love to everyone, Mo xxxx
Hi all - sorry for the absence. Another long stint in hospital with an infection. Sadly, very unwell again. I was sure I was facing the beginning of the end but my Onc is reassuring and more positive. I still can't move much as even sitting up tires me out but I've started to eat a bit again and feeling that there is light at the end of the tunnel. It is very odd getting a glimps of household life going onwhen I am no longer here. 16 year old cooking, 13 year old learning how to hang the washing up, oh working......and me out of it on the couch, here, but not part of it! The three of them along so well and I know they will muddle along ok but it's still hard. I know you know what I mean.
Ive had my Hickman line out as that is where the infection was coming from so I should not get it again. I just need to build my strength back up. Chemo is delayed until I am stronger.
Im in a more positive place than I was and physically a bit stronger. Hugs to all you special people.
Sadie Xx Xx