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Triple negative secondaries/ recurrences

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Re: Triple negative secondaries/ recurrences

Hi from lazybones here. In fact Lavender I have been pretty active since my appointment... I suppose I feel a little relieved and maybe have more energy as a result. I've already drafted in my great niece as my "voice" so that I can still write and record demos. In fact it may well all be much more efficient now that I have to focus more. And she sings incredibly beautifully - spine tingling stuff.
Big cyber hugs Tina. What a week. Will pray that those mets by your spine especially will diminish so that pain decreases. And all the other crucial ones too.
Laura hope you can find something nice and distracting while you wait for results. You have results next Tues and I have my onc appt on Wed...
Sadie hope your back is a bit less sore today. I have started to look at the shelf of photos and they are beckoning to me. It will be a big task. But since digital photos came in I have ended up with very few sadly. I never really took to digital photos. Luddite that I am.
Hugs to all including TNs, Non-TNs, and lurkers. This is getting complicated isn't it?

Tara xx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Wow, it's all action here- except for lazybones Tara (winky smiley thing here)
Great that you were able to blast on with the WBR, Tina, it means one less day and one less journey.
Jo, I hope that pain settles quickly
Laura, hoping for good results for you.
Lavender
xx

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Re: Triple negative secondaries/ recurrences

Hi jo I have sent u a pm. Sorry to hear you are experiencing so much pain. Take care x
tara- gladuv had some answers today. Fingers crossed things improve 4u soon x
Laura hope all has gone ok in scan world today x
hi to sadie, lulu, sandra, + everyone else x
had my 2nd blast today. Onc confirmed I'm starting xeloda next Tuesday along with bone strengthener. She wants me to see dentist this wk first but it's the last thing I feel like doing tbh. Just want to rest between treatments. She prescribed me some morphine to help with the breathing and the spine pain. Apparently the chest nodes are pretty big+ are right by the spine met hence the added pressure + pain. Hopefully it will help.
Spk soon
Tina x

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Re: Triple negative secondaries/ recurrences

Hi all just a little post ct all done no mention of head probs so I'm guessing all ok will have to see wat results say next tues. jo sorry to hear u got bone pain I've not heard of bone pain with xeloda I've not had any maybe it's the avastin hope it settles sn if you feel a bit sick norm that means for me you have eaten enough with tabs but we are all dif and hopefully will settle hi to everyone tn and not hope y ok Laura

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Re: Triple negative secondaries/ recurrences

Dear tina
Glad you started tment and hope not too bad
Sorry you're feeling rough Tara - is it pain med causing you to wobble ?
I've had one week cap and avastin and lot of pain. Various morphine drugs haven't worked just give horrible side effects and space me out. Hoping gets better as not able to do much.
Welcome zile and good luck to Laura tmrw
Jo x

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Re: Triple negative secondaries/ recurrences

Hello everyone

Tina that is great that you just got on with the treatment. As you say, all done within one week and you can move on with other things. I hope you can feel all the strength from the support here.
Laura and Zile thinking of you today too.

Well I had my ENT appointment. It turns out that he was just asked to look at my voice box. So that he did. The diagnosis is a right vocal cord palsy caused by pressure on the nerve which supplies the vocal cord. The pressure comes from the upper chest, a lymph node or tumour, not sure which. The relief is that I don't have mets in my throat. Thank heavens for that. He reckons my singing days are over. So it looks like I may have to reinvent myself as a female version of Tom Waits.

Still doesn't explain why I can't stand up for more than 5 minutes. I will have to thrash this out with my oncologist. Could be my meds. Or maybe sheer laziness...

Hugs to you all

Tara xx

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Re: Triple negative secondaries/ recurrences

Hi all
hope every1 is doing ok. Just lettin u all know I had my 1st wbrt treatment today. Had a planning appt at 3 + my onc offered me the option of hanging around to have my 1st blast today. I figured it was best to bite the bullet as I'm naturally keen to blast things asap. It also meant I had less time to worry + hopefully I'll be ok to start xeloda next wk. I see my usual onc in the morn then blast in the aft. All done by the w/e.
It was a bit scary but thankfully very quick + staff were lovely. Just difficult to accept I guess + it all hit me emotionally when I saw the machines + masks 😞
had a bit of a headache after but in honesty, my spine is causing me the most grief today. Don't think the hard + flat rads bed has helped. Can't wait to get cracking with chemo + bone drugs...
Laura- best of luck for tomorrow. Hope u can get results quick + all is working well on the xeloda x
Zile- gona pm you now. Hope tday went ok x
love to everyone else on here + thanks as ever for ur support 🙂
tina xxx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Alison, that's not trite about not letting the cancer rob us of todays even if we don't know how many tomorrows we have, it's just true.
Plus I'm not sure that anyone who has dealt with secondaries and an under 5 for three and a half years is allowed to describe any of their viewpoints as trite.
Right at the beginning of this (June 2010)I told myself letting it all get me down and depressed if treatment was completed without spread was letting the whole thing win. I was overinterpreting someone else's experience of it all, as time went by I learned that they had other life problems to deal with and tamoxifen, it wasn't just their reaction to BC.
I have times when I don't live up to my early aims, but that post from you reminds me to make the most. Thank you

And love to all the TNS/R girls whether having scans/breaks or full on bloody treatment
Lavender
xx

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Re: Triple negative secondaries/ recurrences

Dear ladies

I haven't posted on this thread before, not being TNBC, but came across Tina's news from elsewhere and got directed to this thread. Have just skimmed through it and, Tina, I am SO sorry that you now have brain mets on top of everything else. I have a five year old, but she was only 18 months when I was first diagnosed with secondaries, so my heart goes out to you. Fight this as hard as you can for as long as you can.

I have to admit that I don't look at the forums much anymore - too depressing - and on this thread particularly there seems to have been so much grief and bad news lately. I don't know what to say. Try and be strong ladies, don't let the cancer rob you of your 'todays', even if you don't know how many tomorrows you have. It's just frightening how quickly deterioration can come.

I wish you all the best with your various treatments. God, this all sounds so trite... words fail ...

Alison

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Re: Triple negative secondaries/ recurrences

Hey Tina

Hope you get those rads sorted asap. Self-prescribing sound the way to go at the moment as you are the expert in you! Guess you can check it out with the doc just to reassure you.

Hoping you can get some rest on the stroids...

Laurie x

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Re: Triple negative secondaries/ recurrences

Tina no I've gtg have whole body as had head pains as well but they think it's down to my rhumatoid I've had them since before Xmas with no other se so hoping its nothing but we will see a living nightmare this is ain't it love Laura x

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Re: Triple negative secondaries/ recurrences

Hi Ladies -

Welcome Zile - you are more than welcome here and certainly NOT intruding!!!! You sound like you have a h*ll of a time ahead of you too. Hugs and keep in touch and let us know how your doing. Cyber friends are worth their weight in gold!

Tara - Phew, im so glad youve turned a corner! Take it easy though. Hugs.

Laura - Wow, Easter eggs!! I think if i bought them now, i would eat them!!

Tina - Good luck with the planning!! Im sure self perscribing is ok for a day or two, but hope you get to talk through it with your Dr tomorrow. Have you got lots of meals in the freezer and someone to do the dusting? If not, 'take aways' and dust never hurt anyone!

Im ok thx and yes, enjoying some time off chemo. Trying to ignore a sore back and get on with things. Ive been sorting out all the 1,000s of family photos we have to put into albums for the kids - and realise what an AMAZING life I have had - and am still having! Got my bisphosphonates tomorrow which knocks me for a couple of days - but just tired, not chemoed!

Hugs to all posters and lurkers(yes - I know you are there and you deserve a hug too!!)

Sadie Xx Xx

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Re: Triple negative secondaries/ recurrences

Hi all
hope everyone is doing ok 🙂
Zile thanks so much for ur pm Im really sorry I have not yet got back to you. It's jyst been beyond hectic with tge London trip then I've been pretty much flat out since. I promise I will pm you later or in the morn. Hoping your 1st treatment tomorrow. Hope u have lots of support in place with ur young family, I know how hard it is x
tara- hope u get some answers re the thyroid. Fingers X'd it's nothing bc related. Is it poss that there may be some neck nodes causing the prob? It's hard not to attribute everything to bc isn't it- fingers are crossed u get some benign results and soon x
Laura- hope ur not too stressed out about ur scan Tuesday. I've years some good results with xeloda + I'm praying it works for me too, with minimal se's. Are u having full scan or just lungs? Hope u get quick + good results x
sadie- hope ur ok + making the most of ur chemo break. What have u got planned next? Big hgs x
Jo (Hope)- been thinking bout u lots. How have u been since starting the new chemo? Hope it's going well + treating u kindly? Do let us no x
sandra- hope u doing ok too x
Hi to everyone else, TN ladies + others who are supporting us through tough times x

I'm doing ok-ish, feel pretty wiped + chest still giving me grief. Had to increase my steroids yesterday as felt pressure in head + face+ I'm petrified of having a fit or some other scary symptom. This morn I had more visual symptoms within 3hrs of steroids so I took another. Hope doc is ok with me self prescribing! See him tmoro for rads planning + hopefully I'll be able to crack on with the treatment soon. I'm very conscious of the swelling + the probs it could cause so I want to get zapping + quick. Also want to push for xeloda rather than waiting til after tge rads- even a low dose would do. Just feel I need something now!
Will keep u posted.
Thinking of you all + hoping ur all ok
love Tina xx

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Re: Triple negative secondaries/ recurrences

Zile welcome to our thread I'm sure someone will pop on sn to help Tina hope you had a restful weekend and feel up to coping with next wk my ct is tues so back to panic mode not done much this weekend weather awful rained all w e on fri me oh went to tescos bought Easter eggs then had lunch but unf that my highlight lol hope everyone is ok love to u all Laura

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Re: Triple negative secondaries/ recurrences

Mary Grace

Thanks for your reassurance! I will keep my fingers crossed and hold my thumbs (as they do in Sweden!) that it is unrelated.

Zile, I hope you find the support you need. Thinking of you too in the treatment weeks ahead.

Love to all

Tara xx

Jo_BCC
Member

Re: Triple negative secondaries/ recurrences

Hi Zile,

Welcome to the BCC discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies I have put for you below links to some of BCC's publications which may help you. Also available is our freefone helpline where you can talk to the staff in confidence, no question is a silly question, they're here to support you. Calls to the helpline are free as are all BCC's publications.

Secondary BC:
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bcc...

Secondary BC to the brain:
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bra...

Secondary resource pack:
http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

I hope these help. Take care,
Jo, Facilitator

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Re: Triple negative secondaries/ recurrences

Hi ladies,

I hope you don't mind me posting on this thread. I have never posted on these forums although have been reding them since diagnosed with BC in May 2011.... However, the recent news are forcing me to as I think I need all the possible encouragement, strength and wise words from ladies who are going through similar things and understand well all the fears.

Tina, I am so sorry to hear about your news. I have to say that I was faced with the same news on exactly the same say - brain mets. Originally diagnosed with BC in May 2011 whilst 5 months pregnant with my second child, bone mets in August, got better but there was then a lump in my other breast so had bilateral MX 4 weeks ago, now to start WBR tomorrow (5 blasts, the same as you).

It is soooo so hard to cope with all this especially since I have had a numb left side of my face as a result of brain mets and I just keep wandering if i'll ever get better. So far no treatment has worked well (apart from the bone mets being better). I am not one of the tnbc ladies, am HER2+ but herceptin doesn't seem to be doing the trick. My onc has now requested the funding to put me on Lapatinib and she seemed quite confident that I will get it. So hopefully the week after WBR I will be starting Lapatinib and Capecitabine.

Sorry for the rather long post and sorry for intruding. If anyone knows of any other threads that might be of any use to me please let me know. Or possibly people who have been through WBR or had brain mets. Tina, I sent you a private message too - if you feel like it please reply. I know how much you've got on your plate at the moment, but I can be here for you as someone who is going through WBR at the same time.

Good luck to everyone in fighting this horrible disease.

Lots of love,

Zeljka

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Re: Triple negative secondaries/ recurrences

Hi Tara,

Sorry for jumping in to the thread again but as no one much seems to be around, just wanted to say glad you are feeling a bit better. Hard when the stuff which might be going round anyway adds on top of the other challenges you have.

I'm not aware of anyone mentioning throat or thyroid secs since I have been around these forums, although I did have a colleague who, unconnected to bc and when she had other problems, had her thyroid removed and checked for cancerous cells. She has to take medication to keep her thyroid levels right, but other than that it was a keyhole surgery. Thyroid turned out not to be malignant, they can have problems of other types which interfere with their function.

Sure this is the last thing you need to be handling, but hope it turns out as with my friend, to be un-related and, as hers was for a long time, something that can be managed. Were it to require surgery though, people get on OK without their thyroid gland though it might mean an extra tablet or two.

xx

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Re: Triple negative secondaries/ recurrences

Hello dear people

Gradually on the mend and am reassured that I've had a tummy bug. Thank you for your concern It takes a while though when there's other stuff going on physically. Next thing is my ENT appointment on Tuesday. My GP told me that this may be re thyroid involvement. Bit worrying that. Anyone else with throat/thyroid mets? I don't think I've heard anyone mention it on this thread.

How is everyone doing this weekend? It was so sunny here yesterday, but now pouring. Anyone had any nice outings? I'm becoming increasingly wrapped up in vicarious pleasure!

Thank you for your words of support mfb and other non tn posters. Sadie, thank you for your positivity 🙂 Tina, hope you can feel calm and supported as you face the new challenges ahead. Everyone else - thanks for being there!

Love and hugs

Tara xx

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Re: Triple negative secondaries/ recurrences

Mfb - what wonderful words. Yes, the ultimate goal is to keep seeing the smiles on the faces of people we love for as long as long can be!!

Hugs to all.

Sadie Xx Xx

mfb
Member

Re: Triple negative secondaries/ recurrences

To all of the wonderful, caring, supportive Ladies on this and all BCC threads....

I wish you the strength to cope with the adversity that you face along the way, the acceptance and ability to wrap yourself in the warmth from the love of the many who support you, in person and from a distance. The challenges may vary but the ultimate goal remains the same.

Big love,

Sxx

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Re: Triple negative secondaries/ recurrences

Hi ladies and non tn girls sadie so sorry to hear about dd it's so hard for them my son no better told me the other day I'll live to I'm 80 bless if only he so in denial glad y going to the Marsden I might see u . Tara8 aww sorry your not to gd why don't u give hos a call u can't kp being sick hope u pick up sn. Tina hope u had sum rest thinking of u hi to everyone else hope we are all ok it's nice to have more ladies here love to all Laura xx

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Re: Triple negative secondaries/ recurrences

Oh Tara, what a shame. I do hope the sun shines for you soon. I wish I could help. Have you got local friends you can call on??

Hi Tina, go for it girl!!! You can do it!! Hugs nd more hugs!!

It is a great pleasure to have non tnbc people posting!! You are more than welcome! The more sending those in need a bit of love the better.

I'm booked into the Marsden in a couple of weeks for a review nd look at any trials. My DD had a meltdown tonight. It is so hard to see her sobbing nd feel v helpless nd responsible!! She says it is gcse stress aswell. As others have said, it coping with the thought of leaving the kids that Is the v v v v worst.

Hugs to all,

Sadie Xx Xx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Tina,
Thank you very much for updating us all, you know we want to know how things are but if you're tired or wired, we can wait a little longer!
I am glad too that you have discussed the whys and wherefores and therefore are going into WBR knowing it is the right option.
Good Luck re the steroid dose, it sounds as if you are in good hands.
And I am happy to have non TNBC in here, backing up our lovely girls.
And very pleased to hear Laura saying the same.
I feel a fraud sometimes as a TNBC but not recurrences bod. I have had a recurrence scare with lovely backup here.
Have as good a weekend as possible everyone
Lavender
xx

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Re: Triple negative secondaries/ recurrences

Hello everyone
Thanks for the update Tina I hope you can now have a nice relaxing weekend now that decisions ar made.

Have been really sick for 24 hours. GP says may be a bug. But on top of being so unwell anyway I'm completely laid up 😞 Patrick (20) is doing what he can for me but am feeling really sorry for myself. I seem to have lost half a stone and finding it hard to drink.

Just needed a little moan. Thanks for listening xx

Tara xx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Yes, love from me too as a part-time, though non-TN member of this thread. Hope you don't mind me continuing to post on here.

Been thinking of you Tina and agree that rads are very effective, as I know from personal experience. Lots of love winging it's way to you from South Wales. It's good that there are only 5 sessions of WBR and hopefully they'll start the Xeloda too as a double-whammy to get to work on the other mets. I know you will cope with this.

All the best, Sarah xx

Lulu34
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Re: Triple negative secondaries/ recurrences

Tina big hugs my love...l thanks for keeping us informed of you progress. Glad the neuro is sounding so positive good luck with wbr planning and rads.

Take care sweetie

Lulu xxxx

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Re: Triple negative secondaries/ recurrences

Hi Tina

You must be absolutely shattered and hoping you can get a bit of shut eye with the stroids - I hate them with a passion too!

It's good to hear your onc say that you'll cope OK and that 5 should be enough to kick the little B's into touch, so hopefully the SE's will be few.

Big cyberhugs

Laurie x

PS: Thanks to the triple neg gang for putting up with us positive invaders. I know what a great tight thread you have 'cos sometimes I lurk 😉

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Re: Triple negative secondaries/ recurrences

Hi Sarah, totally agree on rads. I had rads for my primary bc and was told by my onc that rads is a "very much undervalued tool in the armoury against bc but perhaps the most powerful we have"

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Re: Triple negative secondaries/ recurrences

Rads are amazing I had loads of skin mets around my mx scar. With rads I could see them disappearing before my eyes. Very thankful for that. Tina I am sending you as big a hug as cyberspace will allow. I am not tnbc and hope you ladies don't mind me butting in x

X Sarah

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Re: Triple negative secondaries/ recurrences

Tina, lovely to know how you are and how thoughtful of you to take the time to update everyone amidst what sounds like a week of weeks (understatement). So many people are following and willing you on, whether or not we usually appear on this thread. I am not tnbc but want to send you cyber hugs.

Well done for exploring the options and good to know that you have a plan, that it is clear that WBR is confirmed as the right option not just the first one suggested and that gamma knife is there in your armoury for the future. Also good that they are monitoring whether you have enough steroids to control swelling until rads can zap the bc cells to bits. Hope you get your new chemo regime under way soon, that xeloda works well for you and that the WBR will soon be underway and within a week (assuming 5 sessions fit into a week) will hopefully have done its job

MG xx

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Re: Triple negative secondaries/ recurrences

Hi everyone
can I just say a huge thankyou to everyone on here for their overwhelming support. You are an amazing group and the support means alot 🙂
just wanted to update after my London trip. Sadly I am not a candidate for gamma knife because their are alt of micro mets scattered round so WBR is defo the best option in my case. I'm ok with that and I'm glad we went and explored the option. Obviosly gamma may be an option in the future if there is any small scale recurrence.
I am in on Monday for wbr planning and I should imagine I'll start it within the following wk. It's only 5 blasts + my onc thinks I'll cope fine+ is hopeful I'll respond well.
I'm pretty exhausted after a frantic few days. My breathing + cough has been giving me jib and I'm most worried about this at the mo. Really hoping they'll let me start the xeloda next wk instead of waiting til after the rads. Don't think I can afford to waste any more time, there's just too much activity elsewhere to ignorewhilst focussing on the brain.
I'm gona try + rest today, not easy when wired on steroids but I will try! Neurosurgeon yesterday said there was signficant swelling round the tumours + seemed to think I might need to take a higher dose of steroids. Hope not, fingers crossed the symptoms will stay controlled on this current dose as I hate steroids with a passion, particularly the insomnia side effects.
Love to all my triple neg buddies on here, hopefully brighter times are ahead for us now after an awful few wks. Jo, hope ur feeling ok after the new chemo? Lets know x Sadie the holiday sounds fabulous 🙂 x
Love to everyone else, I promise to catch up properly with u over the wkend, all once the dust settles. It's been a crazy week...
Love to everyone
tina xxx

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Re: Triple negative secondaries/ recurrences

Hi Tina
Just wanted to send loving thoughts and prayers and cyber hugs to you and your family, I don't post on here but like the other girls you and your family have been in my thoughts. I am going to a reiki share tonight and will send healing thoughts to you

Angela xx

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Re: Triple negative secondaries/ recurrences

hi all what a lovely sunny we have had went for lunch with my oh and older son was nice to be out in the sun.tara8 no my scan is tues will get results on 13 thank god not a frihope everyone is ok thinking of you today tina i hope your ok and have had some positive news hi to everyone else and just want to say thank you to all non tn members who came on to wish tina gd luck its so nice to see we have the surport of the whole forum love to all laura xx

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Re: Triple negative secondaries/ recurrences

Hi Tina
Sorry to invade your thread ladies, seeing all the support you give Tina I’m sure you won’t mind, I regularly follow your posting Tina and I’m sorry to hear that this awful disease has landed some more cr@p on your doorstep for you to deal with. I hope the outcome of your appointment today is positive and that you start a treatment plan soon. It must be a very hard time for you and your family and yet again you are going to have to dig deep to find the reserves to push forward, but just like in the past you will find them. I hope today is more positive for you sending you and your family warm hugs and positive vibes.
Tx

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Re: Triple negative secondaries/ recurrences

Hello dear people.
So much going on at the mo on this thread it's hard to keep up. Laura did you have your scans? Tina, thinking of you and hope you have a positive appointment. Sue, lovely to read your supportive post for Tina, but sounds like you are having a tough time as well, so thinking of you. Hugs to everyone on here.
At last have my appointment with ENT to find out what's going on with my throat and voice. Just as well I got my album launch out of the way in January while I could still sing! I don't think I posted much about it but I used the launch to raise money for Breakthrough Breast Cancer who have been doing consistent research around TNBC as well as other BCs. £555 to be exact! I'm so pleased I did it. Now 6 weeks later I couldn't even get up and sing at an open mic night.
It is so unpredictable this disease. I think that makes it much harder. We have to build things into our lives to hang on to when times get tough. I'm trying to get my bedroom really cosy now that I spend more time there. Off to get new bedding today if I can get a lift. Can't afford it really but what the heck.

Love to you all
Tara xx

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Re: Triple negative secondaries/ recurrences

Tina

Just wanted to wish you well for today. I rarely post because I always have bad news and feel funny about spreading it...... However, you and I are in a similar place and wanted you to know you are not alone.

I am 'riddled' too and had a seizure episode last week. MRI showed no definjte probs in brain(but probably in meningeal fluid). They did find more tumours on my spine so getting some rads today as my left foot has lost power. Lots of mets everywhere else.

I know how scared you feel I have two young daughters. Funnily enough, doing memory boxes and scrap books has been a lovely, funny and creative job. (obviously i am hoping well be opening them together in 10 years!)

My point is, with the steroids and other drugs, I am feeling really well and glad they have helped you too. and once you know what is happening today, I expect you will feel calmer, more purposeful and prepared for the next stage. This journey we are on is so muddled and messy sometimes, but there are good days when things fall into place and we can get our heads rounds the next bit one little bite at a time.

I look forward to hearing how it goes for you and sending you lots of energy to use in the way that helps you most.

Sue x

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Tina thanks for updating us to let us all know what is happening.... We are all behind you 100% and I hope you get some positive news from your neurosurgeon.

Sadie your holiday sounds fab so glad you had such a good time with your family.

Much love to all
Lulu x

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Re: Triple negative secondaries/ recurrences

Thanks for taking the time to do the update Tina. Hope things go well for you with the Cromwell guy tomorrow.

Big hugs to your and all your family who sound like they are doing a fab job supporting you just now.

Laurie x

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Re: Triple negative secondaries/ recurrences

thanks tina. have been thinking about you loads and wish you all the very best in London x

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Re: Triple negative secondaries/ recurrences

So glad you are able to look at various options for treatment Tina. Let's hope it will be possible to have something that isn't too hard to manage. Good about the steroids. Great when they do the trick. Thinking of you.

Thanks Sadie for the wonderful account of your hol. Sounds brilliant! I have had an invitation to Barcelona (no ice for me thanks!) from friends who live there. Not sure if I can get there, but it is in the "to do" pile. I agree - we should all have a "wonderfulness list"

Melissa, it is good to see you here as our local contact was brief on the Herts/Bucks thread, but great to hear from you again. Any news of Sam? PM me to catch up. We never met but...

I'm off to have an aromatherapy session at my local hospice tomorrow. Haven't been there before so have also asked for a tour so I can get my head around it all. They also do respite so I may need that as I will be mostly looking after myself. I find I am actually looking forward to the visit!

Still having trouble with disappearing messages. Jo, it was you, (not Tina - my mistake) who said you had this trouble too. Any idea why?

Love to you all

Tara

Tara

sarah68
Member

Re: Triple negative secondaries/ recurrences

Good luck in London, Tina. That sounds really hopeful.

Sadie - the account of your holiday sounds brill - wonderfullness indeed! I'd love to see the Northern Lights - they sound magical.

Love too to Laura, Jo, Tara, Lulu and everyone else on here.

Sarah xx

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Re: Triple negative secondaries/ recurrences

Aww Tina so pleased you manged to pop on its all a mad rush trying to sort stuff hope u get some gd info and will know what is going on a bit more after tomorrow kp in touch tc Laura

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Re: Triple negative secondaries/ recurrences

Bless you for providing us with an update.
You must be so so busy with everything happening at once!
Thanks for keeping us in the loop and good luck for your trip to London later today. I hope you receive supportive news from the professionals at the Cromwell Hosp.

Wx

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Re: Triple negative secondaries/ recurrences

Thank you for all the wonderful messages of support 🙂 I can't tell you how much it means to me. I'm keeping busy and the steroids are helping (understatement) feel high as a kite!!
Anyway quick me-post and update as I haven't been off the phone all day + now have to quickly pack as I'm off to London this eve with my mum. Thanks to the advice of the lvely tillycat on here, I'm going to the Cromwell hospital 1st thing to meet with a neurosrgeon who will ofen give stereotactic rads to multiple mets, whereas most will only treat a small number. It's not a cert, I'll be having an MRI in the morn which might pick up more smaller mets + he might think that wbr is in fact the best option for me. But it's something I have to explore + I'm luckily covered on our private health for this too.
I've jst had a chat with my own onc who went through my scan reports + and confirmed progression everywhere else. Even my ovaries appear to have joined in the party! Bones too, as suspected (2 areas of spine). Liver worsened but still plenty of healthy normal tissue apparently (phew). Neck Nodes increased in size as have hilar nodes in chest, which are causing a prob in right lung + prob casing my breathlessness. Few other bits+ bobs but I think u get the message. It's a word I don't like to use but I'm feeling pretty riddled right now 😞 But... Keeping strong + focussed on getting together the best treatment option possible. Feel pretty frantic as it's all happening at once but it's a good distraction.
On a positive note, I've not had any nasty symptoms since starting the steroids + they're giving me the necessary energy to do what is needed.
Will keep u updated. Love + thanks to all you lovely ladies
tina xxx

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Re: Triple negative secondaries/ recurrences

have not posted for a long time as i had forgotten my password and sign in :o(. Anyway i have read the thread and have seen the news. Tina i am so sorry with the recent development. Sending love and hugs to you and your family xxxx

xwelcomex
Member

Re: Triple negative secondaries/ recurrences

Hi Tina. Wanted you to know I've been thinking about you since I saw your comments on the other post. Just dropped in to see your news. Such a tough, unfair thing to happen. Do hope there is a bloody useful treatment plan to keep things in check :-(.

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Re: Triple negative secondaries/ recurrences

Hi ladies
I always follow this thread but have never posted before. I am so sorry that there has been so much bad news recently.
Sadie,i am glad you posted
your holiday sounded so lovely
My husband has booked for us to go to Iceland for my birthday next month so i can see the Northern lights - it's always been on my wish list (lets hope its not cloudy) i can't wait. Apparently we can go on husky sledge ride- it sounds like something we should definitely do :-). i have been feeling a bit rubbish lately and was wondering if i had the energy to go, but reading your post makes me definite that i should gather myself together and go however i feel! My onc has given me extra steroids and antibiotics to take with me along with his mobile number if i don't feel well and need to talk to him so i think that means he is ok with it. its a warm 0 degrees there and we are booked into normal hotel so i think we shall miss out on 'running in our thermals' - which is prabably a good thing because running is a bit beyond me at the moment and also i really dont think it would be a very pretty sight!!.
Melissa XX

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Re: Triple negative secondaries/ recurrences

Hi - It feels a bit odd posting about my holiday here with all the diffuclt news - but a few people have asked and so I will. However, if you dont feel likie reading it - pls skip to the next post!!

The Ice Hotel really is made of ice ice and snice (snow and ice combined!). You sleep on an ice bed with animal fur on and in a super warm sleeping bag! All the rooms and themed and DD and I slept amongst ice holly and OH nd DS had an 'under a bridge' room - complete with cardboard boxes, tumble down walls and oil cans - all made of ice!! There is a warm changing area next door and then you 'run' in your thermals (!!!) from the warm area to the cold. As we were running the Northern Lights came and we just stood open mouthed!! It was like it was raining lights! Anyway, it was -17 and so we soon carried on to the hotel where it was only -5!! In the morning you are woken with warm logenberry juice! The hotel also has an Ice Church and an Ice Bar. We saw a few weddings but the Brides looked SOO cold!! We managed to pass DD off as 18 and she had her first drink in the Ice Bar - then my son licked the ice glasses and stuck them to the wall!!! We had one night in the cold hotel and then three in the warm (luxury!!) log cabins next door. We had a husky sledge ride and met the huskies - they were so friendly and excited to be going out for a run! We stopped in a wigwam in the forest to light a fire and eat raindeer stew (sorry santa- it was yummy!). We wizzed along frozen lakes on snowmobiles and i managed to tip mine with DS on the back. We dug him out of the very soft snow but the picture of us both trying to stand up when the snow was soooo deep and sooooo soft was a picture. My tears of laughter were freezing on my face as it was -25!!

It was a wonderful holiday - but I think our lives are about finding a bit of worderfulness in every day. May be we could post a few of these to give us a lift? Today my son grabbed my hand and gave it a extra squeese as he got out of the car to go to school. It was wonderful!

Hugs and wonderfullness

Sadie Xx Xx

Lucy_BCC
Member

Re: Triple negative secondaries/ recurrences

Dear Tina

In addition to the wonderful support here if you need a listening ear our helpliners are here for you, lines open 9-5 during the week and 9-2 Saturday on 0808 800 6000

Take care
Lucy BCC