71587members
375580posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Triple negative secondaries/ recurrences

Margot10
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Its been a while since I posted about Mum but I am always checking up on all of you guys! Mum has had her 3rd dose of AC. On day 5 (ish) for 3 days she looks and feels awful, but then she perks up again! When she starts nagging us we all say, 'Oh, she is feeling better!!' Has anyone else had this chemo? Any tips? Mum has extensive bony mets. Her breast care nurse rang me last week and we had a good chat. I have asked her to find out a rough idea of 'how much time we have'. Sounds awful, but we keep hearing other peoples views and it would be better to hear it from the horses mouth.
Have any of you filled out a DLA form? We got it ages ago but with everything that has been going on (5 year old son in hospital with nasty fungal kerion) its been forgotten, but then a friend suggested that I filled it in as not only might she receive some financial help, but she may well be able to get a newer automatic car. She has an old manual fiesta at the mo and it is starting to get quite sore when she is changing gears due to the mets in her shoulders. Again, any tips gratefully received.
Much love to you amazing girls
Jane
busybee2161
Member

Re: Triple negative secondaries/ recurrences

Hi All, Just finished three weeks of radiotherapy and now have six weeks free before my next appointment so will make the most of it. Have had some nausea and vomiting which I'm now beginning to think may relate to the oxycontin and oxynorm. Have any of you taken this and how did you get on? Moondog - reassuring to hear you find your current chemo is easier than FEC. Fingers crossed its working for you. Tara - enjoy your visitors but hope you don't find it too tiring. Take care everyone. BB x

chrisp1e
Member

Re: Triple negative secondaries/ recurrences

Haven't been on the site much lately. Used to feel the 3rd week after my chemo but last time and this time the good week never came. Just felt every week was the same.
Lulu - glad you've managed back to work, but take it easy!
Moondog - I've been getting reflexology every week for the past month. I love it and the reflexologist has been getting me into relaxation techniques. Only thing is I'm like a zombie all day after it.
Tara - good that you're continuing to be positive and looking at natural recovery. So get on your bike - when you get it! I'm going to be looking a lot at diet and supplements when my chemo is finished. The last one is on Friday this week.
Regards to all.
Christine xx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Just popping in to say Hi to everyone and congratulations to Lulu on getting back to work-take it easy on the non work side until you are re adjusted. You have been such a star on this board, in fact better than a star as you have shed so much light on so many people's problems, Mwah!
Lavender
xx

moondog
Member

Re: Triple negative secondaries/ recurrences

Hi all
Just back from Wales, it's so beautiful even in the rain.
Tara, I hope you're having fun with your visitors. Any more thoughts about getting that bike?
Sandra, excellent news about your scans. I'm really interested to hear that you've been on Avastin for over a year. I've heard others have done well on it, but whenever I mention it my onc she seems a bit luke warm.
Lulu, love your new photo. The hair's growing back a treat - you'll need a trim soon! Pleased to hear you had a good time on your holidays and hope you're getting on well at work.
Laurie, fingers crossed for your scan results. I'm due my first scan since diagnosis in a couple of weeks and only now understand the scanxiety that builds up. I'm jealous about your caravan! Love the idea of touring round at the weekends. I read in the Daily Mail that summer is due to start next week, so it must be true
Jo, I've been thinking about you a lot too, I hope you're ok and the hospice has been able to get your pain under control.
Sadie, how's it going? Have you started chemo yet?
Hi Kim, thanks for dropping by, I've read that you're supporting your friend though her treatment for triple neg secondaries. I'm just strating out so don't have an extensive knowledge of chemos, but there's another called Eribulin which I don't think your friend has had yet.
I've got my third Carbo next Tuesday and then a scan to see whether it's working or not. I so hope it is and that I can continue with this treatment. It's really doable for me. After treatment I get a couple of very rough days but then bounce back quite quickly. I've got normal energy levels and find it so much easier then FEC. If this doesn't work, I switch to Docetaxel which sounds grim.
I had my first counselling session last night which went well despite my reservations. I cried buckets at my assessment and felt really depressed afterwards - I ended up giving a potted version of my life minus all the good bits.
I've got a lovely reflexology session this afternoon and I might even be able to put my washing out to dry today.
Lots of hugs to you all
Moondog xxxx

bestfriend
Member

Re: Triple negative secondaries/ recurrences

Hope you don't mond me gatecrashing
Kim x

bestfriend
Member

Re: Triple negative secondaries/ recurrences

Hi from a lurker, Hope you ladies are doing ok, but how are you Sadie? worried about you
Kim x

Tara8
Member

Re: Triple negative secondaries/ recurrences

Hello everyone
Great news Sandra. So pleased things are stable. I've got a couple of visitors over the next two weeks so will be preoccupied. So forgive me if not on here much for a wee while. I will lurk tho and throw in an odd comment. Love to all and hugs and keep on keeping on.
Tara xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi lovelly ladies
How are you all doing?
Tara, catch up with yr energy reserves, rest up, and hopefully enjoy a bit of sunshine,x.
Sadie, how are you? Have you started yr new chemo now? X
Jo, Laurie, moondog, Laura, hope yr all pain free , and keep on keeping on!
Lulu, luvlly to hear your back at work, and getting back into the swing of things.x
Ive had good news this wk from onc, bone scan and ct scans, both ok, no progression, the avastin seems to be keeping everything at bay. Will carry on every 2 wks as usual for another 3 months. Been on avastin now just over a year.
:)
Luv n hugs to you all
Sandra xxx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

I have been away holidays, went to T in the park at the weekend and got soaked and caked in mud and went back to work yesterday which was actually quite good but turing. been very busy and prob wont be on here as much now im working but will pop in now and again to check on you lovely ladies.
so saddened to read so many of you are struggling right now too 😞
sending much love to Hope, Sadie, laura, Laurie, sandra, tara, val, chrispie, moondog, BB and everybody else.

Lulu xxx
scottishlass
Member

Re: Triple negative secondaries/ recurrences

Hi Tara, I have been on Capecitabine and stopped it after 6 cycles as my feet were such a mess. I managed 18 months without needing them. But then i started on it again at a lower dose for about 8 months. I then had a gap of 2 and a ahalf years before I started it for the third time and am now on round 7 of this cycle. Why am I telling you all this? Just to say I know how it feels to stop the chemo because of the side effects. But also when I realised I was becoming more unwell and my TMs were soaring I could start it again. I was ready for it by that time and the reduced dose has made such a huge difference. All the best. I hope you enjoy being off the peachy pills for the summer.....what summer? Love Val

Tara8
Member

Re: Triple negative secondaries/ recurrences

Hi everyone
Just a quick note to say oncy and I decided today to abandon the 6th cycle of Cap as side effects are catching up on me. Those of you who have seen my posts for a while know I am a chemo wimp, and a natural recovery believer! So I'm very pleased with the decision and am now going to focus on getting fitter as my energy returns. Might just get a bike.
How's everyone? Laurie thinking of you. You have a lot going on... Laura, hope funds are building for Ricky's jump! Christine I so well know that feeling when you want to relax all the time. Well why not? Just go with it. Meditation often helps you understand what you most need at that time. Sandra thanks for PM. Will respond when on PC.
Love to all
Tara xxx

chrisp1e
Member

Re: Triple negative secondaries/ recurrences

alesta - will be thinking of you when you go for your scan and await the results.
I'm having a kinda can't be bothered week. Have been getting into relaxation and meditation and enjoying it but I thnk now I feel I want to relax all the time!
Managed to walk the dog for a wee while this morning. Was all set to take her out again a wee while ago when the rain came pouring down. Wish it would go off and stay away for a while.
Regards to all.xx

laura64
Member

Re: Triple negative secondaries/ recurrences

hell its only let me post on my pc wooooo

laura64
Member

Re: Triple negative secondaries/ recurrences

hi all hope you all ok im off for a hair colour fri after a long tearey convo this morn with bcn might go all way and have massage to felt a bit down this morn we just want to be normal dont we i wish this blooody rain wld stop kids off next wk cant do much in this can we i hope y all ok love to all xxx

alesta29
Member

Re: Triple negative secondaries/ recurrences

Hey gals
Weekly check in from me.
Migraine yesterday (so expecting a mini one today becasue that''s how it seems to go)

Had to delay my Xeloda for a few days as neuts down a bit and nurse worried my feet weren't back to normal so started cycle 3 on Firday. Platelets and neuts already down and hubby has cold so sleeping in another room.

Double scan early next monday at the Marsden (Liver CT and Brain MRI) with results on 23rd. I'm assuming neither will show that everything has miraculously disappeared

Have borrowed friend's caravan for the summer (what summer?) but can't really plan anything until I get results. Daughter and her friend spent the weekend sleeping in it on the drive and had a fab time!

Trying to do diary for the family but so upsetting wrting stuff down. Also have a tape recorder but to be honest that isnt any easier. Arranged some financial stuff so that's a bit of a weight off my mind. Just coming to the realisation that there are so many things I want to do around the house that I won't get to do them all - better teach my daughter sewing and upholstery!

Hugs to all. Apologies if I have posted something like this before - I have big time chemo brain! (And now I have to pop into work to see some patients - thankfully I'm not doing life or death stuff so they should be pretty safe LOL!)

Laurie x

busybee2161
Member

Re: Triple negative secondaries/ recurrences

Hi Tara, Sorry that was me - didn't realise if you edit a post it goes to back to the top of the thread! BB x

chrisp1e
Member

Re: Triple negative secondaries/ recurrences

Sorry but chemo brain can't take in everything I've read in the new posts, but sorry to those of you who are having such hard/bad times. Thinking of you all.
Tara - good news that you've been seen and going to get something done.
Regards to all.

Tara8
Member

Re: Triple negative secondaries/ recurrences

Oh how weird that my post has come up before yours BB when I was answering you! xxx

busybee2161
Member

Re: Triple negative secondaries/ recurrences

Hope everyone's had a good weekend, especially Jo and Sadie and anyone else struggling at present.
I've been resting up as was exhausted after 2nd week of radiotherapy, but good excuse to sit back and watch the Wimbledon finals........poor Andy.
I've been seeing a lovely palliative care nurse who's been very helpful, and hope to get to the Maggie's secondary cancer group this week.
How open have you ladies been with your children about your diagnosis?
Bye for now. Take care. BB x

Tara8
Member

Re: Triple negative secondaries/ recurrences

Hi BB
Macmillan and BCC, I believe, do booklets/pages re this subject. There was also a discussion a bit further back on this thread I think. It all rather depends on the age of your children. Mostly openness is key I think - and calmness too. The Macmillan booklet has some good thoughts on what not to say too.
My kids are older - 20 and 22, so I try to be open, but also reassure them about where they can look for support if and when they need it.
Largely I think kids take the lead from your approach. If you are frantic/calm/tearful/realistic then so will they be. Though it's important to elicit their worries which may be about things you haven't thought of - like when my son asked me how he was going to pay the rent when I'm gone! An understandable worry but hadn't entered my head that he would be thinking that way.
Hugs all
Tara xxx

Tara8
Member

Re: Triple negative secondaries/ recurrences

Thread a bit quiet so just bumping for Annie who is trying to find us!
Wishing you strength Rawlie while you await results. Yes we just have to get used to uncertainty being the norm in our lives. I guess it makes us more aware of the present and how to enjoy each good day.
Tara xx

Rawlie
Member

Re: Triple negative secondaries/ recurrences

Hi all,
Sorry to hear some of you are having such a rough time. I really hope things improve for you.

I have now had my 5th week of chemo. Doing ok, feeling achy and pretty wacked out most of the time. I will be having a CT scan after the 6th one to see how I'm responding. Then I don't know what happens after that. I suppose continue with the chemo. My onc was pleased with the last blood test, said my liver and kidneys are functioning well. So that's definitely a positive. Feel like I'm in limbo at the moment until I get the scan results. But I guess that's just how it is!

Anyway, wishing you all well.
Rawlie x

Tara8
Member

Re: Triple negative secondaries/ recurrences

Thinking of you Jo. Hope you are getting some decent pain relief.
Laurie - hope you don't feel quite so low now. It comes and goes doesn't it? Hope the youngsters settle down.
Sadie - hope they get the next spinal bloc in the right place. You've been waiting long enough.
Everyone else and lurkers - lots of hugs.
Have been working this week in fits and starts and went to the office yesterday. Consequently didn't get up this morning until afternoon. Xeloda tiredness does build up and I'm pretty weary now just reaching end of cycle 5. Hands and feet ok and am sure the pyridoxine helps. It's a vit B complex and has been prescribed by my onc since cycle 2.
Lots of love to those of you having a tough time.
Tara xxx

LesleyLP
Member

Re: Triple negative secondaries/ recurrences

Hi, I'm not trible neg either but just wanted to give virtual hugs to you Jo, so disappointing that you can't have your holiday and that your liver is not functioning properly. Maybe it'll right itself with a short period off chemo and then you can start again - the liver is one tough organ. And the hospice really doesn't have to be scary, they can do amazing things to get pain under control and hopefully you'll be out again in no time and feeling much better. Really feel for you though with such young children. I never know if it's worse to have teenagers (as I do) who understand quite a lot of what's going on or little ones who don't understand but are so much more vulnerable.
Laurie, I think Xeloda can do funny things to the liver in the first couple of cycles so don't panic, mine has settled right down and every bit of the LFT is now in normal range. My SE's are worse on the week off too, feet really sore today and they've been fine for the last two weeks. Weird!

Lesley xx

lizcat
Member

Re: Triple negative secondaries/ recurrences

Popping on even though I'm not triple neg, although I do have bone mets, to say I am sorry so many of you are having such a rough time, especially Hope/Jo. Although I haven't been to a hospice to be seen yet, I do know quite a lot of others who have and found it very beneficial and nowhere near as scary as they expected. I think it is just that word 'hospice' that strikes fear into anyone but we tend to forget they are experts at helping with pain management. Perhaps they may be able to get you into the position where your liver will be up to taking more chemo. Or can you ask for a second opinion from somewhere? I don't know where you are so this could sound very condescending, though it's not meant to be.
Anyway, here's hoping you all have the strength to get through these difficult times and can come out the other side in a relatively better situation.
Liz x

cromercrab
Member

Re: Triple negative secondaries/ recurrences

Hi to all. Just popping in on this thread to say hi to Hope. I hope you manage to feel more comfortable over the weekend.
Laurie, it'll be fine. Why do you think you are triple neg? Hormone thingies didn't work for me either.
I would love to be able to wave a magic wand over us all and we would wake up and this was all just some nasty dream.

X Sarah.

alesta29
Member

Re: Triple negative secondaries/ recurrences

Hi to all

Hope the swelling sounds pretty awful and a bit scary. Definitely hassle your doc before Monday - you don't want to start off the hols feeling so rough.

Laura, when I was young (and invincible) I always wanted to do a sky dive but realistically, I would have needed somebody to shove me out the plane when it came to it! I'm not an adrenaline junkie - can't even go downhill on a bike without having the brakes on and now that the Tour de France is on (I'm a huge fan) I have to watch the downhills through my fingers.

Sadie, If you do Cap, I've actually found it the easiest SE wise. A little bit of fatigue and you really do have to watch your feet. MY 3rd round was due to start on Monday but neuts were down to 1.5 and while Diane the SBC nurse said I could usually go ahead, because my feet were still not quite back to normal, I have delayed until tomorrow. Weirdly, the SE's are often worse on the week off! When my GP called with the neut results he then started to tell me about my abnormal liver function when I was in the middle of TK MAXX. I shouted "Don't tell me those, you'll freak me out" and I think the girl at the checkout thought I was some mad woman!

Having a bit of a tough time emotionally at the mo. Son has just got his first girlfriend and daughter is on the edge of periods and make up. Keep thinking this might be my last summer and can't seem to shake it off at the moment although I'm sure I'll be back to normal in a few days. OH has just left for Bournemouth to pick up a caravan which we are borrowing from a friend for the summer. "It will be nice to get mummy out at the weekends" he said to the kids last night - makes me sound like the old granny they take for days out! LOL!

Wondering if I should ask them to biopsy my not-responding-to-anything-so-far-liver. If it comes back triple neg then at least I would know there is no point in thinking about other hormonals, although I don't know if I would ever go back on hormones since everything keeps growing and now the brain mets.

Sorry this has turned into my pity-party. Feel free to give me a virtual slap and knock me out of it! Dogs to get out, clothes to choose and one of my students to counsel who has failed both her modules (one of them twice) Hope she doesn't cry - might just set me off...

Hugs to all!

Laurie x

alesta29
Member

Re: Triple negative secondaries/ recurrences

JO - hope that you're getting something sorted and today is a better day for you and your family.
Laurie x

alesta29
Member

Re: Triple negative secondaries/ recurrences

Jo that's been such a tough day - you must be feeling so overwhelmed.

I'm assuming that no active treatment today doesn't mean that's it where treatment is concerned. I know that just the word hospice is so scary but it might be the best place for a few days as they are so good at supporting all of the family and they will have pain specialists that can help you get things under control. Much better to be there than on some general ward where you get ignored.

Im hoping it's just a blip with your liver. What chemo were you having? SOme chemos are more gentle on the liver so it may be that when things improve you can have something else?

Big hugs - thinking of you all.

Laurie xxx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi all
Hope your daughter can retake Laurie. Is tough for kids to carry on normal lives when the family
Torn apart. A lot seems to have happened since mon. My onc was pleased liver function tests were at plateau last week and this week liver become very enlarged and uncomfortable. I was examined mon but got worse so examined tday.
Have been told cant have chemo if liver not working and are checking bloods. I feel rough and have had hospice nurses around, just in Case medicines delivered and offer to go to hospice for time to get medicine sorted. All too much for one day. I can't believe such a change in one weeK to be saying no more active treatment. Yday i was proudly watching son win under 4 sports day and kit him out for school. I've been praying I can take him for first day school and brother for first day at nursery. We were meant to go to
Isle wight sat but all cancelled now.
ove Jo x

laura64
Member

Re: Triple negative secondaries/ recurrences

Hi all sadie sorry to hear about y mum hope she picks up sn I'm ok just started my next wk of tabs will look and update post later on phone my brave son is doing a 10000ft sky dive for the royal Marsden in aug I'm so proud of him so brave if anyone want read at he's just giving page just pm me ill give u the link but like we all know every little pound help when I read he's page it was so sad made me cry we forget the family in all this love to Tara moondog hope lulu bb and hugs to everyone else xx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi all
How are you BB,,moondog, Laura,val and Laurie ? I'm glad you posted sadie as did try to messagebut never know if went through.
Hope results are stable Sandra on Avastin
Im getting v worried as liver pain been bad a week now and am so bloated I can't get comfy anywhere. I had Dr mon but will have to go back as worse. My liver is so swollen. I just hope I can carry on chemo as if this isn't working only eribuLin left but your liver needs to be working. Back pain still bad but doesn't worry me as much. Meant to be away sat but not looking likely unless they can drain or something. I'm praying for a good school holidays but not starting out good
Sorry for moan
J x

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi All, Thank you so much for your support. I've just re read my last post and realised how fed up I was. It's a hard one to take! I was so sure the trial was going to work. But it it hasn't......so on with the next plan! Onc meeting tomorrow. Meanwhile.........my spine.........well, the Marsden are 100% sure there is a tumor on my spine and my spinal surgeon is 100% sure there is not!!!! So, I'm in a rediculous situation. Two 'centres of excellence' disagreeing completely. I'm trying another epidural spinal block md will ask my Onc about the tumour / no tumour situation. We always seem to be in the middle of conflicting info and advice - or is it just me?? Sadly my mum was so ill after her chemo she ended up in hospital very unwell. She is out nd better ( ish) now, but she's having a rough ride!
Sandra - thx for pm. Fingerscrossed for results!
Moondog - sorry I didn't get your pm, but I think an email? I will check. I hope your trip goes well. Lovely thing to do.
Tara - yes, disability has some perks (sort of!!). I'm off to the air tattoo on Sunday nd get to park close and special 'enclosure' right next to air strip. So glad the concert was as good as you hoped. Hugs Xx
Jo - I do hope pain dr has helped. Most nights I shed a few tears as pain hard to take and it is such a balance as, as you say, the pain killers just knock you out. Pls don't apologise for moaning - its horrid. Many many hugs. Xx Xx
Lulu - so glad the holiday went well. Sunshine is wonderful!! Xx
BB - I was self employed but stopped working at secondary diagnosis and really pleased I did. I'm now retired!!! But others carry on. A very individual situation. Xx
SLass - I hope your meeting with your Onc was ok nd you've got your next set of pills! Also hope you've caught up with some sleep now. Hugs Xx
Laura - nice to hear positive stuff about cap. So glad it's working for you. Will ask for top tips if I am headed that way! xx
Laurie - thank you! I'm not sure what type of port mums got but I hope she can have bloods through it too. Hope you are doing ok.
Hugs to everyone else and - come on Murray (I'm watching the tennis!!).
Sadie Xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi ladies
Very pleased cos I can post on the thread now, using my iPad , hasn't let me post for weeks.
Lulu, glad you had a good holiday, we could do with some sunshine over here now. Good luck on yr return to work.x
Sadie, so sorry to hear that the trial didn't work, hope yr onc sorts out yr new chemo quickly. Have you got new painkillers for yrback pain, hope so. Sent you PM. X
Tara, glad you got appt with yr throat specialist, and got op appt for sept. The concert you went to sounds fab. Well done to you to camping out. Sent you PM. X
Moondog, how's the carbo going with you? SE s ok? Whereabouts are you heading in Wales on your hols, I live in Pembrokeshire in SW Wales. Hope weather brightens up for you.x
Jo, wishing you extra energy to cope with the summer holidays, with yr family. Hope painkillers are working well for yr back.x
Laurie, how are you doing? Chemo going ok? N SEs too?
Hi to Laura, Sarah,BB, val, and everyone else I've missed, sorry.
Im still on avastin, every 2 wks. Had bone scan last wk, ct scan today,chemo tomo. Will be seeing onc nxt week, for the results.
Luv n hugs
Sandra xxxxx

moondog
Member

Re: Triple negative secondaries/ recurrences

Hi there
Lulu, good to hear from you and glad you had a good break, what I wouldn't give for some decent sunshine. Shame you can't pop your ironing over here, a bit of frantic ironing helps me get through the steroid jitters!
Tara, Hop Farm sounds great. I was tempted to go and see Prince there last year. Get yourself over to WOMAD!
Sadie, sorry the trial was a disappointment, I've sent you a PM I think xx
Laurie, pleased to hear you're having fun. I live about a ten minute drive from the Olympic site, so it's going to be manic around here in a couple of weeks. I'm looking forward to the torch passing through but pleased to be spared the sight of Sir Cliff dancing around with it!
Second course of Carboplatin tomorrow. I saw my onc today to iron out a few niggles - I always feel a bit better when I've spoken to her. Off with a friend to see Prometheus in 3D tonight and then hopefully heading over to Wales on Friday for a week. I'm taking the girls for a trip down memory lane to the place my family always used to go when I was little - hope it stops raining.
Love to Hope, Rawlie (how are things?), Busybee, Val and everyone else.
Xx

alesta29
Member

Re: Triple negative secondaries/ recurrences

Jealous! Would love to have seen Peter Gabriel! Good to know there are a few perks with SBC and disability...

Just watched the olympic torch go past my house - great fun!!!

Lx

Tara8
Member

Re: Triple negative secondaries/ recurrences

Hey everyone
On my way back from Hop Farm Festival. It was great. Amazing to see Armatrading, Randy Crawford and Dylan on the same night. Great show from Peter Gabriel. Also Richard Ashcroft - The Drugs Don't Work made me cry. It is such an angst ridden thing.
Disability camping was a big plus. So good to be near the main event and to be able to bring the car to the tent to unload and load. My OH is really impressed with the perks of my disability - for him. Discovered from the lady in the next tent, who also had BC secondaries, that your 'carer' can go free to WOMAD. So might do that 🙂
Anyway I've had a little read back over recent posts. Love to all and better feedback next time. Just want to wish Jo all the energy you need for the summer break. (Sounds like you are in Ireland if you are breaking up school this early? I lived in Athlone for 12 years hence my comment).
Catch up soon. Hugs xxx
Tara xxxx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi Everyone
Am sorry for your loss val, is very hard losing a parent. BB - I went Ill health retirement from beginning as stage 4 then. I worked for NHS and was very straight forward with HR and occupational health. I have been awarded my pension as a lump sum so was worTh doing.
Pain still big problem as now liver pain flared up as well as back. Was just crying last night not knowing what to do. Totally knocked off this morning from drugs but pain still here. Pain doctor coming later but the pain so hard to control as pops up everywhere. Sorry for moaning as know we are all struggli
Love jo x

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Sadie so sorry to hear the new drug hasnt been working for you.... but hopefully you can get some treatment on your spine and get the pain under control... thinking of you and your poor mum having to go through the chemo too.

tara fantastic news about ENT.... hope you will have a voice again and can do a bit of singing once more come septemer.

val so sorry to hear about your mum... sending big hugs your way.

Jo i hope you can get some relief from the pain soon.

laurie hope you had a lovely anniversary.

big hugs to Laura, Moondog, Rawlie and every body else.

i had a fab holiday in the sun... was almost too hot... 36 degrees on wed! apparently having a heat wave and getting higher than normal temps... it seems to have s... just what the doctor ordered.... now got a european washing mountain to get through! have appt with my daughter at the ED clinic and dentist this week and then we are off to T in the Park at the weekend... but not camping this year... just too old and achy these days so prob be commutung back and forth. and then starting back to work on 10th.

love and hugs to you all
Lulu xxx
busybee2161
Member

Re: Triple negative secondaries/ recurrences

Hi Everyone,
Sorry to hear your latest news Sadie. It so often seems to be two steps forward and three back with this disease and must be so difficult trying to support mum at the same time. Hope you get started on new treatment ASAP.
Glad your ENT appointment when well Tara. Shame about the wait but good to have a date to focus on.
Val - so sad you've had to say a final farewell to your mum. Losing a parent is difficult enough but doubly so when living with cancer. Time now to be kind to yourself.
I've had a tiring week yo-yo-ing between work and radiotherapy, and have been appreciating having the weekend off. I had a chat with a lovely palliative care nurse on Friday. She advised a few tweaks to my pain medication and we discussed a lot of things which had been going around in my head but which I hadn't fell able to offload on anyone else. She says I could probably get ill health retirement if its what I want. Already have a referral to the occupational health doctor to discuss my options. Would be interested to hear if any of you have gone down that route.
Wishing you all well with the week ahead. BB x

scottishlass
Member

Re: Triple negative secondaries/ recurrences

Hi girls. The funeral for Mum is over and I am catching up on lost sleep. But my daughter is only here until Tuesday so I really want to be awake! I am sorry that your trial did not work for you Sadie but capecitabine will help you and that you will get some radiotherapy soon to sort things out. I am sorry that your Mum is having a rough time too so love to yu both and I hope things improve for you soon. I am seeing my Consultant tomorrow and on Tuesday I go for my Zolidronate infusion and pick up round 7 of chemo pills IF my Consutant thinks I shoud continue. personally I think it is working but wil know more tomorrow. I am happy to continue with this regime if it helps. Much easier than other chemos now that I am on a reduced dose that is. Thinking of you all and although I am not a triple negative lass I know that we share similar experiences. Thinking baout you all. Take care, much love, Val

laura64
Member

Re: Triple negative secondaries/ recurrences

Oh sadie so sorry wasn't able to post before no comment box avli silly site all I can say is ive been on cap since jan it's still working well and shrinking my mets so don't give up hope and the xeloda queen was on it for yrs so kp trying hi to all will catch up sn love to moondog Tara hope lulu bb and everyone else xx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi
Im so sorry sadie as your hopes must have been shattered again as having receptor seems unusual so thought gotreatment woulda would work. This cruel disease is so unpredictable.
Others seem to have done very well on cap and my onc has someone on it 18 months so fingers crossed. The vinorelbine I'm on is low on side effects but think used after cap whichdidn't work for me.
Am sorrry you have to watch mum suffering too and for her. Am MRI showed up my spine as ct was reported stable but I knew wasn't from pain. I had RT 4 weeks ago and no relief yet but told to be patient. I can have a nerve block but think you had that at wrong level. Hugs to you tonight.
Tara / glad you can have an op but shame to wait.

Hello to everyone else and hope okay having some good days. All 4 kids home from next Friday so need energy boost and pain to go! Love Jo x

alesta29
Member

Re: Triple negative secondaries/ recurrences

Sadie
Pants that the trial didn't work. Good luck with the surgeon tomorrow and hoping they can do something soon- why don't people listen to us???

Sorry to hear your mum is having a rotten time. At least a port would make things more comfortable and if they use a power port then they can use it for bloods and scans.

Have you done Cap before? I've found it much easier than FEC and TAX and I can give you some top tips if you need them.

Good that you're getting to see the surgeon Tara!

Lx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi all. Not good news I'm afraid. The trial drug is not working. The tumours in my lungs have all grown. They are also fairly sure my back ache is a tumour in my spine as I've been telling them for months!! So, spinal surgeon appointment tomorrow to plan. I can't go on like this. I need some radiotherapy and SOON! Meeting with my Onc next week as will be back on chemo too (prob capcitabane) . All a bit pants really. I was holding out so much hope in the trial and it's really not what I wanted. Makes this horrid disease all the more real.
My mum started her chemo today. Had to be done by hand drop by drop as was making her feel so ill. Should have bern 1 hour and it was over 3 1/2 just for the chemo. She's having a port put in for next time as her veins were very poor and this is only cycle 1!!!! It still sounds all wrong her having chemo. This bl**dy disease!!
Tara - really pleased you have an ent plan!! I had not realised no GA with chemo. A shame you have to wait. Hugs.
Laurie- happy wedding anniv. Hope it was a good one. Hugs.
Moondog- thx for good wishes. Glad you've got the Marsden link. Xx
Hi to everyone else and thx for being there.
Sadie Xx Xx

Tara8
Member

Re: Triple negative secondaries/ recurrences

Had a brill appointment with ENT surgeon. Will carry out the surgery I need but under general anaesthetic. So means I need to wait till I'm well over the chemo. Have a date for September. I know it's a while but pleased to have some hope. It'll help my voice but not necessarrily the swallowing. But hey ho it has to be better than how I am.
Love to all
Tara xxxx

Tara8
Member

Re: Triple negative secondaries/ recurrences

Hello my Lovelies
Well the madness continues this week with my eldest here too this week. He needs a lot of support so it has been a tad tiring. Work tomorrow. Thursday 2 hospital appointments. Friday off to Hop Farm Festival to see my fave Dylan, and Joan Armatrading, Randy Crawford. And so on. We'll be camping so I hope I'm resilient enough to cope. And I'm the seasoned camper no OH. I'm sure we'll be ok once pitched. I'm buying a fold up chair and will make use of the disability platforms!
Laurie. Sounds like a great day. My son Patrick is a fan of the alternative cinema in Cambridge. Is that the one you went to? My boys went to see Promethius there on Sunday.
Laura. Hope you are doing ok? Still must get down the train line to see you.
Sadie. Hope results ok. Let us know.
Moondog. Glad you are reassured. Last year I asked my onc if I should go to the Marsden and she said sure - but they will probably say that you are on the right treatment. So I decided to go with her on that. But I agree about being on the radar for trials.
Sorry not to mention everyone, but love to you all and sweet dreams if you read this tonight!
Tara xxxxxx

laura64
Member

Re: Triple negative secondaries/ recurrences

Hi all thanks for replies everyone sadie gd luck today hope it's working well for you moondog I'm under the Marsden yes they are v gd hi Tara hope y ok hunnie lulu happy aniversary hope u have a fab day hi to everyone else hope y all ok hope big hug Hun tc Laura x

alesta29
Member

Re: Triple negative secondaries/ recurrences

Hi All,
Sadie, sorry to hear about your stay in hospital and good to hear you are home and hopefully feeling much, much better. Did you say that you get results soon?
Moondog - yes the Marsden are fab and hope your mind has been put at rest that you are on the right thing.
Hugs to everyone else - I'm on a new page so can't scroll back and haven't made notes!
It's my wedding anniversary today so we're off to Leicester to my fave Indian restaurant, then Grantchester for tea and cinema in Cambridge! (only place I could find showing a half-decent film - what is it about multiplexes???)
Lx