Triple negative secondaries/ recurrences

Hi Dawn .
thanks for ‘butting in’ and for your suggestion re the drinking water on the day of chemo- I’ll certainly try and drink more (although I have to balance this out with the number of visits to the loo. I feel a nuisance asking them to ‘unplug me’ from the coldcap each time I want to go). x

Sadie - Firstly well done on complaining to the hospital - I really do hope they get their act together for you.
I seem to be like you,the taxol kicks in day 3 and 4. My taste buds have gone weird. I’ve just tried a bowl of soup - yuk - a bag of cheese and onion crisps - yuk - but great I can taste the mint in a mint flavoured kitKat! (I can see the pounds creeping on as we speak!). Other than this I get a lot of sharp pains in my breast - but I just see this as taxol munching away on the bad bits.
The lump on my neck has reduced significantly and the smaller ones also seem less - so fingers crossed

How come they put a hickman line in - is this something you asked for? Does it make things easier for you?

I hope everyone enjoyed the wedding today - I’m blaming the chemo for my flood of tears, thankfully OH out at work so could cry.

Linda
:slight_smile:

sadie,thank u so much 4 ur posts. u always make me smile and laugh with ur positive attitude.havent posted to u but have read urs and if i can share a little bit of your pma(pos mental att)thank you for making me smile again. if i smile my kiddies smile.that makes me so very happy . alex xxxx

Hi Alex - you have made my day. Thank you so much! I try and think that why should the cr** of tomorrow spoil my today. Today is good and it is the here and now that matters! It does not always work and sometimes the horror of the situation we are in takes over. So, I find a child to hug and it puts me back HERE. How old are your kiddies?

Hi Linda - The Hickman line works a treat! My veins had all gone awol so I just go and plug myself in, plug and go!! It was a minor op and needs tic (district nurse comes) but much better than playing hunt the veins twice a week (once for bloodshed and once for chemo). Everything I eat tastes of salt!! Even bananas! I promise to try a mint kitkat! I loved the wedding too!! Heart warming. I was v pleased with myself complaining! They are all so nice, but the procedures nd staffing levels are a joke! They were pleased I said something! Delighted your neck lumps are reducing!! Fantastic.

Smiles nd hugs to all.

Sadie Xx Xx

hi sadie, my beautiful boys are 5 and 14. big one been such a sweetheart when he really should be out having fun.lil un, well, he,s my lil un and doesnt moan if mum cant sleep and crawls in bed with him in the small hrs(save disturbing my self employed hard workin hubby and lil un loves it!)lots of love sadie, and long may you make me happy with ur messages. thank u for making me feel better alex xxxxxxxxxx

Hi Alex - your kids sound wonderful! Mine are 11 nd 15. So grown up already! Long may you keep me smiling with your wonderful replies!! Take care and it would be nice to keep in touch.

Hugs
Sadie Xx Xx

Hi - Just wanted to say ‘hi’ to everone and bump this up.

Taxol number 6 is just leaving the building - but the walls are still moving and just hit a door whilst walking through a door frame! I dont know who was more suprised, me or the dogs! They gave me a very odd look.

House a mess, sun shining but too cold to sit in, and need to find some energy before this afternoon! Had enough of lying on the couch - it looks more like a bed than a piece of furniture to SIT ON!

Anyway - hugs to all ‘TNsecondaries’ and would love to know how you are all doing??

Sadie Xx Xx

Hi Sadie, sorry the tax is still making you so wobbly… heather seems to be getting off light with se from the tax, she had number three today, and is still seeing improvements, the ibc in her remaining breast is less red, and less pain all round, so thats good. She has her first avastin this week…some of the reports from America about how ‘they’ want to withdraw it for use with breast cancer seem a bit scary, nasty list of side effects, but the people who are on it are fighting to keep it, so the se can’t be that bad. sometimes I think its all about money, maybe I’m too cynical!! Hope you are able to get off the couch and tidy up a bit, its only mess but it always feels better when its a tidy mess!!
I keep Heather up to date with how you are doing, maybe one day I will be able to persuade her to come on the forum, but then she will read all the things I have been writing about her!! kim x

Hi ladies
sadie thanks for bumping our thread! Good to hear the tax fog is lifting a little. You are always so cheerful you are a tonic :slight_smile: Ive just replied on your thread about travel insurance- it’s a joke isn’t it! I do hope you can go away though x
bestfriend- glad heather is coping so well with the tax that’s great news :slight_smile: pass on our best wishes. Yu are a lovely friend. my experience with friends is that the novelty soon wears off with the whole cancer thing + only a select few stick around + stay supportivein the long term. Here’s to more friends like you!! X
Sarah how are you doing? Good I hope x
margaret hope you are feeling a bit beter now + have resumed chemo as planned x
claire- good luck for tomorrows top up hope you are on the mend x
sandra- still thinking of you + hoping all is ok x
Kelly I’ve sent you another pm thinking of you x
hi also to jjane, nileema, jo + any other tnbc’ers I have missed x

I’ve been quite rough since last weeks chemo, tum has been up the wall. Constipation + nausea like you wouldn’t believe :frowning: Feeling a bit stronger today but head foggy- feeling a bit dizzy/ giddy, which is worrying me but hopefully it’s just post-chemo weakness…
Love to you all
tina xx

Hi Tina and all of you

Just to give you my news such as it is so I don’t lose touch with all of you. Have had some encouraging news re my markers going down, though not so great on the bone stuff. Had my last EC on Tuesday and will have scans on 16th with results on 25th at my appointment with my oncologist.

Have also agreed to go back to work after recovering from this round of chemo. Will do 2 days a week so that I am under 16 hours and can apply for certain benefits. Also have managed to get DLA under the special rules. Please PM me anyone who would like the low down on this. I think all of us triple negs should get it and it is not means tested. It is worth pursuing at £125 per week… Some people say it feels like “giving up” but I believe it is about taking control amidst all the uncertainty that we have to deal with.

Good wishes to you all, though too numerous on this string to mention. Hats off to Tina who does manage to keep track of us all!

Jo xx

Hi jo
great to hear from you I’ve been wondering how u were getting on. Well done for getting through chemo + best of luck with the scans + results. Hopefully the blood markers are a good sign + uv had a great response to the ec chemo. Good news about the dla- I also get it under special rules. I’m not getting any wages now + it’s a great help as we had no insurances in place (didn’t expect the big ‘c’ to bite me on the ass aged 32…). I’m impressed that you are going back to work- in considering it in July before the school hols but need to speak to my union etc first. Can’t bear the thought of it but if it means I’ll be entitled to another 12months sick pay, it may well be worth the trauma!! Keep in touch x

hope everyone else is ok? I’ve had a crap day, felt really emotional (long story) then managed to have a bump in my car :frowning: Im fine + noone else hurt, just hit car in front at lights- traffic started then car ahead slammed on + I couldn’t stop in time. Thankfully the couple in the car were lovely + said it was the car aheads fault. Couldn’t have coped if they were nasty. Anyway we’ve swapped details + I’ll let the insurers do their stuff…
Must cheer up for our weekend away…
Love to all xx

What you like Tina!!?!!

Glad nobody was hurt. I’m never one to play the system, but a gradual phased return to work which was unsustainable and led to entitlement to more sick leave doesn’t sound so bad…! But yes, check with yr union and also yout employers sick policy first.

Hope tmrw is a better day for you

vickie
x

Hi all!

Just a quick “Hello” to everyone here! Glad to welcome Jo back - good luck for scans and horrible “Scanxiety”- you certainly will have to wait a while for results. Hope you are OK, Sadie and feeling a bit better - I dread to ask, but how many taxols will you be having? Tina - saw your other thread and Happy Birthday! to your little Dan - hope you enjoy your Peppapig experience! Sorry about your car bump - it really shakes you up, doesn’t it?

We’re going away to Bude in Cornwall at the end of the month - Spring Bank hols. Looking forward to it - especially being able to swim/bathe and go in jacuzzi/spa thing as I was too ill do do a lot when we went last July - had just finished last taxol and still had PICC line in. Still managed to have an embarrassing scene with a pedalo boat - fell backwards into the boat trying to get out, then got wedged into the seat due to enormous backside, had to crawl out on stomach ! At least I didn’t fall in but it was a close call! I’m trying too to lose weight as I’m sure my Lymph. arm is getting bigger (hopefully only temporary). Have lost 4 lbs (did put on 3 due to Easter piggery!), but the diet I was doing was interacting with my anti-deps and making me feel depressed and dizzy. Seeing lymph. nurse in 2 weeks so hoping to lose 3lbs again by then with less strict diet.Still, not a lot of probs. considering what most of you are going through - sorry to witter on… Off to vote now - what fun!

Love to you all, Sarahx

Hi All - Today feels better - Its amazing what getting hold of some Take That tickets does for you!! It is nice to make others happy too - my duaghter and sister in law are soooooo excited!! Just hope im well enough to go too!

Hi Jo - The word ‘scanxiety’ that Sarah used is a fab description of the emotional …waiting… for scan results!! Ive just had a MRI come through for the 2nd June (need a CT at the same time, but no sight of the appointment yet!!) to see if this chemo is having any effect - nervous already!! Hope you are OK and good luck with planning to go back to work!

Hi Sarah - 18 Taxols are planned!!! (assuming it is working following scan results - otherwise I swap to something else!). I thought 6 TAC two years ago was hard going… this is a long haul! But, if it keeps me HERE then I will do it every week for ever and ever and ever! I dont want to have to give my Take That ticket away now ive got one!!! Lovely image of you on a pedalo! Made me smile - did anyone have a camera?

Hi Tina - Im sorry you are feeling PANTS and the car is the last thing you need!! I think it is sometimes when we know something exciting is happening and you have been looking forward to it - the dark cloud comes just to remind us of the horrrid situation we are in. I do hope the wind blows the cloud away soon and you enjoy a very special Birthday with your beautiful boy and peppa pig!!!

I have got DLA at the higher rate - is this different to claiming under ‘special rules’? I hate to even think about this being the case (Im sure you are all the same) - but extra money would help!

I am off to Sheffield for the weekend to watch my daughter play in the National Clubs Netball finals. Should be a really nice weekend. Just wondering if I can cope with my wig all the time or may have to have the first ‘non hospital hat outing’!! My OH and son are coming too - so it will be like a mini holiday. Luckily ive not had chemo this week so have some energy! Will still have to ration it - but hope it will keep me upright for the matches! Im a very proud Mum - her and her friends have done so well to get there - top 18 teams in the country!! Sorry to witter on…best go and pack some bananas!!

Love Hugs and Smiles to all

Sadie xx xx

Sorry, me again!!! Just told a ‘school Mum’ that i am not well. She then spent the rest of the conversation rubbing my back, holding my hand nd stroking my hair!!! Why? Why? Why??? I had to escape nd find chocolate!! Im now hiding in the car!! I dont think GBH would be good letters to have after my name!!! I dont even know her name!!! Some people!!! Right, i WILL sign off now…

Happy weekend everyone.

Sadie Xx Xx

Hi to you all,

I’m a new poster to this strand - am feeling very encouraged to find that there are other people out there in my situation, all living through it - as have been feeling very lonely & down recently.

I’m 47 (48 on 19th May) - had HER2 +ve breast cancer, which has returned after chemo as tng. Like Tina, it’s recurred as a rash in my breast (had a lumpectomy), and has also spread to my lymph nodes in the opposite axilla. It also recurred very quickly - finished chemo in around June, but cancer returned before herceptin ended in March - so feel a bit cheated. The rash is growing like mad & is worrying me - but I start on FEC next week so I hope I’ll see some reduction in it. Has anyone had FEC? How bad is it? I had TCH last time & the Taxotere was horrible!

I’m also sad that I probably won’t see my 2 lovely children - 9 and 13 grow up - & haven’t really found a way of dealing with this yet. Finding day to day living quite difficult as it’s all very raw at the moment, so any tips on getting yourself out of bed in the morning and getting going would be gratefully received. Some of my nearest and dearest think I should be more positive and Carpe Diem & all that stuff - which I can in my better moments, but sometimes I find it all very hard.

Looking forward to getting to know you all better,

Louise x

Hello all, oldies and newbies. I havent been on here for such a long long time, but have been reading all your posts and keeping up to date. Unfortunately things went very pear shaped at the end of Dec and got dermatomyositis, very debilitating, same condition as Scaryfox who helped me enormously in Dec and Jan. I sadly havent heard from Scaryfox for a few months and Ive read a few other posts where people have tried to contact her with no success. All I can say with everything crossed is that Ive only just learnt to type again as lost use of hands, arms, legs everything really so it may be that typing hurts too much and thats why we havent had any contact. I just wanted to also quickly say as Ive been reading about insurance and hols etc, I have got insurance for next month, 3 weeks worth through Insurancewith. I was totally above board, told them everything, secondaries in lung, lymphs, stomach and diaphragm, currently on weekly taxol with no end date in sight, all the steroids I take for the dermatomyositis - as I was saying it I was thinking what on earth are you even wasting your time for. Anyway they came back with a quote for £79! It also included all my family. Medical bills to £5m. The only thing it wouldnt cover which is fair enough is cancellation due to my illness. So if any of you havent given them a try, maybe worth it. We are going to South of France, driving there as Ive also got Pulmonary Embolisms (can I get much else!)but I didnt tell them we were driving so assume they think we are flying. Thats my lot for now, best wishes to you all. Debs xx

Hi all on here!

Oh, Debs, it’s lovely to welcome you back on this thread - what a hell of a time you have had! I can’t imagine how you’ve been feeling…I’m so glad you are feeling a little better and hope the taxol does good things for you so you can enjoy things. the trip to the S. of France sounds awesome - I was last there in '84 as a teenager - yes, I’m that old! I love France - I did a French degree, was a Fr. teacher etc but haven’t visited it since the 90s. Will definitely be visiting again, health and finances permitting… Great, too, that you’ve been successful with insurance - there has been a lot of debate on here about it. We have all been wondering and worrying about Scaryfox - she seemed like a gentle, lovely and private person, who never seemed to moan or complain about things.

Welcome, too, to Louise. Sorry you’ve had to come on here - but you will find loads of support and kindness from these wonderful women. I must admit I found FEC pretty awful to deal with when I had it for my first dx in 08, but we are all different. I’m sure Tina, who started this thread and certainly knows what’s what, will come on and give you some advice etc re: skin mets recurrance. I believe she had rads on it.

Sadie - great to hear you’ve got tickets for Take That. I like them too- they are a lot better than their Boy Band days in the 90s, now. Love Robbie W. too - is he with them on tour? Brill. about your daughter’s Netball championship - you must be very proud - hope you have a good time in Sheffield. I’m originally from Yorkshire myself (near Halifax) and we lived there till I was 14, though my adoptive parents are/were(originally) from S. Wales. Loved it up there! Yes, I did 18 taxols too last year - tough, but you’ll get through it! I hate all that nauseating pity and stroking too! When I went for my first lot of rads 3 years ago, I rushed in, late as usual, and this really annoying nurse insisted on holding my arm as if I was an invalid all the way to the rads place. When had first had my dx in 07, another nurse helped me dress myself, even though I didn’t want her to - cloying sympathy is too much! People often don’t know how to act when you tell them about cancer. I see you’ve nicked my phrase…Sorry to witter on!

Love to everyone else too, Sarahxx

Hi All - Back in Chemoland after a lovely weekend away. It was so nice not to have the first and last thing i was thinking about to be cancer and chemo! Also, to realise I can find energy to do ‘stuff’ if I really want to - very tired now, but worth it to be able to shout for netball teams, be normal, help others for a change and focus 100% on something else (… and nice hotel too even if husband and son were having a snoring competition!!)

Loolabell - Welcome, but sorry you are here. I think about 5% of cancers turn from +ive to -ive, or the other way round. I hope the new chemo helps the skin mets. Im sure Tina will be of help too (mine are lung and bine mets so cant see any of mine!) Hugs xx

Smiley275 - My goodness Dermatomyositis (hope the spelling is right!) sounds HORRID HORRID HORRID!! Do hope you arew well over the worst and it never comes back! Glad you have Insurance for your holiday! I have too - just need to find a holiday now!!

Hi Sarah - Nice to hear you got stroked too and it is not just me with a sign above my head saying ‘please stroke and look at me in a pittiful - head one one side - way’! If I have, pls can I replace it with a ‘yes I have cancer, but I am still SADIE!!’ Nice to hear you got through 18 taxol! You dont say how you are doing now - how are you getting on??

Tina - Happy Birthday to Dan, Happy Birthdayto Dan, Happy Birthday to Dan, Happy Birthday to you!!! I do hope you had a good time at the Safari Park? Was it the one in the West Midlands? If so, it is only about 30 mins from our house - In was thinking abotu a summer meet up? My kids love the animals - but the rides even more!!

QUESTIO TO ALL, Peripheral Neuropathy I did get this at the end of TAC two years ago, but woke up this morning and it comming!! Numb hands and lack of some sensation. It is not too bad, but ive got at teast 11 more chemos to go and would like to know if there is anything I can do to stop it getting worse - happy with alternative ad well as mainstream suggestions? Thank you.

Other than this im not too bad today - will dip tomorrow and resurface Sat!! Here goes - bit like a roller coaster coaster but not so much fun!!

Hugs to all

Sadie xx xx

Hi All

Sadie re your DLA question. High rate is usually only awarded to people who are very dependent and very immobile (and believe me they are pretty strict about the critieria). The special rules apply to those of us who have a limited life expectancy and provide two waivers… 1) you don’t have to fill out all the questions about personal care and mobility, but your application is supported instead by you doctor 2) you don’t have to be “disabled” for 3 months before the allowance is awarded. Normally an individual has to be disabled for 3 months before starting to receive DLA.

Louise good to hear from you, though sorry that you have had such a difficult time. I smiled at your Carpe Diem comment. I have learned that most people say things to reassure themselves rather than me… with good intentions of course. I am now used to smiling wistfully at people and nodding in agreement, but understanding that they are finding this harder than I am. In fact a thread like this is very helpful to balance out that stuff because none of us is interested in pretending that things are other than they are.

Thank you everyone for your encouraging wishes for my scans, work etc…

Love to all of you

Jo xx

Hi ladies
sorry I haven’t been on for a few days but was away at the weekend + it’s been a bit hectic. It’s my boys 2nd birthday today :slight_smile: (btw- Thanks for the happy birthday wishes sadie + Sarah!). We had an amazing time at peppa world at the wkend + have been to Knowsley safari park today followed by a lovely carvery. Perfect! Last carboplatin next week- I’m looking forward to getting this picc line out so I can take dan swimming + hopefully go abroad at the start of June. I’m feeling pretty well at the mo but have been having a few worrying head twinges. Nothing major+ very much on+off, and no other symptoms so I’m trying not to worry. Haven’t had a bain scan since last aug + my onc won’t do it as routine which suits me tbh…

Debs- so good to hear from you!! I have pm’d you to see how you were getting on. Best of luck with the chemo- you defo deserve a break. Did you ever hear any more about the parps? Fantastic news about your forthcoming holiday + fab insurance deal. I’m going to make a few mre calls once I know exact dates etc. Sorry to hear you have had no word from scaryfox. I think about her+ her little boy often. Do keep in touch and let us know how you are getting on X

louise- welcome but I’m so sorry you have had to join us. I undersand how yu must be feeling rght now as I’ve lived the skin mets nightmare :frowning: Mine recurred even quicker + spread like wildfire. I wasn’t given chemo bt did have a nasty op to remove the affected skin, follwed by intensive rads. Did yu have rads last year? If so, that won’t be an option I guess. Has surgery been mentioned. My op wasn’t successful sadly + themets started up over the scarline + started spreading round my side tiwards my back. It was hell on earth. The rads did stop the rash (*touches wood*), but I’ve since developed tumours in the scarline under the skin. There has also been progression in the nodes- collarbone + opposite axilla but thankfully, my organs are clear. Have you had lots of scans? I had fec as my 1st chemo- ididnt find it as bad as taxotere. I know some people really suffer with sckness but I was ok providing I took the anti-sickness tabs. Hair will fallout that’s a cert, and I was constipated like mad (nothelped by the anti-sick meds), but I felt ok for best part of 2weeks of every 3. Feel free to pm me if yu want to chat more. Best of luck X

hi to sarah, sadie + the rest of our exclusive TN ‘gang’. will be back on tomorrow to catch up with everyone but need to get dan to bed now.
Love to everyone :slight_smile:
tina xx