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Triple negative secondaries/ recurrences

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hello ladies
I did post last night and lost it and was too tired to re-type...
Jo- big hugs to you today. What you are going through and have been through is unthinkable 😞 Such a sad day for you. It seems some people have way more than their fair share of bad luck. Hope you are coping ok and have lots of support and cuddles from your family. I have no advice on the blood counts and transfusions, Im afraid. But I have heard its not uncommon to need transfusions on carbo and apparently, the relief they provide is instant so Im hoping you feel Looooaaaaads better once its done. Lots of love and good luck to you xx
Rachel- How are you feeling? You are also having a nightmare at the moment and I really hope that you are feeling a little better since the drainage last week. Is it friday you start carbo? Hope it is kind to you but kicks the cancers arse! xx
Laura- hope today went well? When are you next due a scan? Good luck xx
Lulu- how are you finding the tax-carbo combo? Hope you are managing ok and the hair loss hasnt been too traumatic for you. xx
Sadie- thanks for the pm. I start tomorrow, cant wait to be honest! Sorry to hear about the cyberknife- hopefully you wont need it as the carbo is probably doing its job. Any news on the scan following the reg's cock-up? Fingers crossed xx
Hi to everyone else too hope everyone is doing ok xx
Havent heard from linda and tara (Jo) for a while hope they are ok.
I have my carbo tomorrow morning cant wait to get some poison in my veins. Praying it works well like last time. Had a picc line fitted yesterday, not pleasant but went in easier than last time thank goodness. Its really high up my arm and so very discreet, which is good. Still not 100% after the fluey virus Ive had and Ive been in agony for the last 48hrs after pulling a muscle in my back with all the coughing 😞 The cough is loads better now and Ive spent much of the day in bed today and the back pain is easing too.
Fingers crossed for all of us ladies.
Love to all, from tina xxx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Thoughts and love to all on here, hugs to Jo. Sorry about the cyberknife news, Sadie,

Sarah xx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Just posting to say i think about you all here every day, but today especially love to Jo.
Lavender
xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Oh Hope / Jo . I am so sorry. I also lost a Son and Birthdays are really hard! Try nd remember the smiles nd cuddles I hope you had. Life is so unfair. I will light a candle for him tonight.

My platelet levels are struggling on Carboplatin. I also see a homeopathic Dr who I feel is helping with blood counts. Worth a try? Anyway, hugs and more hugs.

I've just had a no from Marsden about cyberknife (too many mets) and a speeding ticket!!! Aaggghhhh!!!

Tina - when do you start carbo?

Sadie Xx Xx

Nats
Member

Re: Triple negative secondaries/ recurrences

Hi Jo

Big hugs to you on this day. My thoughts are with you.

I am on gemcarbo and have had two cycles. I had to miss day 8 on both cycles as bloods too low. I have been told that what I eat and drink has nothing to do with it, I just have to rest, but it is so frustrating as want to get through the treatment.

I had a blood transfusion last week to try to help but still feel very tired.

Good luck with your treatment today
x

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi All
Ive only had one carbo/gem and bloods v low esp haemoglobin so need blood transfusion. Very dissappointed as only first treatment and want to get through 6 as first one showed such good response. I am having treatment today but then transfusion in day or so. Hope is not the case needing transfusions every time. Has anyone else needed on carboplatin ?

NOt sure if diet helps - does anyone know to raise iron as dont eat meat but do eat spinach, kale etc. Least I know why tired !
Hard day today as also would have been my little boys 5th birthday today who died.
Jo x

laura64
Member

Re: Triple negative secondaries/ recurrences

Hi all I've gtg to Marsden wed to find out why they can't do operation or cyberknife then onto next challenge fq so sorry to hear about y arm etc sending u all big hugs hope no only had the one test as far as I know never mentioned any others I never went to research centre they sent for my tissue as far as I'm aware I'll see wat wed brings love to all Laura

hope15
Member

Re: Triple negative secondaries/ recurrences

Dear All
Sorry not to have posted but post dissapeared into cyber from my iphone. I have not checked in so sorry so later tina to reply and sorry to hear your news but carbo will zap. Try not to think of organ involvement as i had from start and my Onc says how we respond is of importance not where is as is a systemic disease.
I am sorry rachel that you have been so unwell too - is crap and am sending you big hugs and prayers. I am sorry Laura you cant have the surgery but the Marsden I think are tops and there must be a reason and maybe there is another option. I know you had androgen tested - did you have all the other receptors checked as I went to marsden on friday to research unit and am being tested for androgen receptor and pkinase and other receptors in hope they have a drug to clock receptor. They have identified 50 mutations in pathways I was told but are all phase 1 trials.

They advised to continue on carboplatin/gem. I did not have day 8 as a rough cycle with lot of liver pain and nausea and may not have day 8 treatments. In one treatment though two nodes gone from 3-4 cm to a grape so is working and pray continues to in liver and elsewhere including chest and nodes. There seems a few of us on carboplatin now - \i was v nauseous so am taking additional anti nausea after as started day 3. I get more tired than on taxol but feel much better on day if any help rachel.

Love to all others and hope everyone okay.
jo x

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies - What mixed news from all of us! Rachel - I am so sorry it is so hard. Ive PMed you and continue to think about you nd send you hugs! Tina - back to chemoland!! As you said to me before I started Carboplatin, it is 'doable' and hope it has the same good effects as last time. Laura - I hope you are getting some answers to your questions! Its no good just saying 'no' - you need to know why!

Im just upright again after Carboplatin 3. My platelets were super low (74) and had to redo bloods before they would give me the chemo. My Reg has been promising since August to refer me for a scan w/b 21st Nov. She was away on holoday this week, so I saw someone else and guess what - she has not refered me!! I know it is only a small thing, but I wish I could trust the medics to do what they say!! I feel I have to double check everything all the time. If I was not 'driving it' ive no idea what would be happening. Ive even heard her say 'ive no idea - ask sadie' when the nurses were asking about steroids!!! I do like my Onc - so I do not want to change - I just want my reg to WAKE UP. English is not her strong point either - please dont miss understand me! I have no problems she is from another country - but COMMUNICATION is really important, and it is really hard! Anyway.....i feel better for a moan.
Hoping to go out to watch son play footie this afternon - would be nice to get out!! (Footie update - they lost 8-0 woops!!! But he got man of the Match!!)

Hugs and smiles to all

Sadie Xx Xx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Oh rachel my lovely thats just so crap hunny.... Everybody seems to be getting sh***y news this week.... Im glad they have managed to ease some of the pressure from the PE though, that will make life a little easier.

Hoping the carb does the trick and enjoy those pj days dont be worrying that you arent doing much just rest up and take it easy.

Tina hope the mauka helps zap those wee infectious bugs.

Love to all xxxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Rachel I am so so sorry to hear what u have been through this week 😞 It sounds absolutely awful to say the least. I was starting to worry when hadn't seen u posting but hoped it was due to ur sore arm. I'm so glad ur having carbo instead of tax as we had a similar poor response to tax initially so hopefully u will have a similar FAB response to carbo. Got everything crossed, will pm u later once dan in bed xxx
hope everyone else is ok. I can't shake this virus off, really chesty which isn't good given my already wheezy chest. Overdosing on manuka to get me fighting fit for chemo next wk.
Love to all xxxx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hi ladies ... laura am so sorry to hear your disappointing news it really messes with emotions ..dearest tina i am so sorry abouit your progression it just so CRAP but am sure the carb will blitz the little sh***...hello and love to everyone ..i have been in hospital since wednesday came out last night had to have pleueal effusion drained could hardly breathe so awful, they managed to get nealy a litre from left side but only 250 mls from right so had 5 more goes but the bloody stuff wont budge and i did cry on the last attempt just couldnt bear it ,so am back home breathing much better but not perfect and i had call from the christie my trial is no good after review with recurring on tax they think its better to just start gem/carb next friday will get scan results then as have been told they were ok but think that meant to start the chemo not had in depth chat yet,my remaining breast is rock hard itchy blue and purple but that has has biopsy too to see what type it is...have been low and crying just one thing after another had loads pj days just feelso rough everyone on here seemsto be so much more active than me but i really try..sorry for long post but lefthand typing takes me ages as right one still painful and hand numb.. sorry to bleat on but need to get it all in post while up to it, so any info on gem/carb please good orbad and sending you all hugs and love rachel xxx

Nicky65
Member

Re: Triple negative secondaries/ recurrences

Hi Sar

I had to request a bone scan, as I haven't had one for 18 months since my secondary diagnosis. The oncologist ordered me one to rule out progression, as I have been having pains on my skull. He did say that they aren't useful other than original diagnosis, or if there is a fear of progression, as Healed bone looks the same as affected bone and they aren't any clearer whether treatments have worked! but since I have had liver progression, they are only really concerned about Ct scans and I don't think they have given much consideration to bone progression.

I am on xeloda without to many problems - at least your hair will grow back!

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hiya ladies

Tina. So sorry to hear of your progression, it's gutting news isn't it. But try to stay positive, carbo will zap it again for you. Glad to see there starting your treatment next week. Hugs to you(((x))))

Sarah. Sorry you've had to join our page, but welcome, sorry can't answer any of your queries, but sending you good wishes and hugs too.

I've been having chemo today, just got home, fingernails are ok, not got any worse anyway !

Hi to all and hope your doing "ok" today

Luv n hugs

Sandra xx

sar79
Member

Re: Triple negative secondaries/ recurrences

sorry to hear your news tina and laura.
thanks for your replies and welcome! Lulu ive been tested for brca 1/2 as my aunt passed away aged 43 from bc but results were negative. At the moment my onc wont give me hormones as she wants me to try xeloda indefinatly. also they are unsure as to whether my bones are hormone plus or neg. So confusing its really battering my head! Also could i ask if anyone has bone disease do they have regular bone scans? my last one was march and my onc says they have no plans to do any more despite further new pains. yes tina its such a shitter isnt it but at least weve got our tots to keep us going! mine are struggling with the whole baldness thing at minute. must be quite scary for them eh.
love to u all xx

wubbly
Member

Re: Triple negative secondaries/ recurrences

Just to say Tina and Laura, I'm so sorry to hear your news.

Tina, I've had a number of very tiny lung modules for around 18 months, although we didn't know that at the time. They were there at my original scan and have grown just a little since then. Now I'm on gemcarbo I'm hoping that growth will slow down even further and I hope it's the same for you, or better still that these spots disappear completely for you. I'm keeping everything crossed for you.

Laura, I can't imagine how you must be feeling, to have really positive options just taken away from you, without explanation. I hope you get to the bottom of it and they have a really good reason. It sounds dreadful.

Sending love and hugs to you both and to everyone going through this. I hate breast cancer, such a cruel, indiscriminate disease.

Wendy
xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Thanks ladies your kind words of support are much appreciated 🙂
The liver news wasn't expected but the rest was no surprise. The news has floored my oh and mum but think we are all in a bit of shock really. I haven't shed any tears as yet but I'm sure they will come. Onc was very positive + kept assuring me that developments were tiny but organ involvement obviously takes things to a whole new level.
Sarah, welcome. I have also heard that removing a breast tumour can have survival benefits when stage 4. I'm another youngie dealing with all this crap with a young family. BC + particularly tnbc is an absolute shitter 😞
big (((hugs))) to all xxxx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Oh Tina I'm so sorry I know it was your gut instinct but doesn't make it any easier to deal with. Hope the carbo does the trick again. Sending oodles of cyber hugs to you sweetie xxxx

Laura very sorry to hear they have pulled the rug from under you yet again. Sending oodles of cyber hugs to you too xxxx

Hi Sarah I think there is new evidence from America that actually removing the tumour is beneficial in helping halt disease progression.... I know in the past surgery following secondary diagnosis was rarely done.... Do you have a genetic mutation? With your personal history you could have a test for brca1/2 if you wanted.... I had a hormone pos 7/8 and triple neg in the other side.... It's a sneaky wee bugger changing itself.... Will you be starting hormone therapy like zoladex and arimidex? Good luck with your decision.

Love to all moulting Lulu xxxxx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Well said, Nicky. I agree.

Love and hugs to you, Tina. We are all here for you any time.

Hi, too, to Laura.

Sarah xx

Nicky65
Member

Re: Triple negative secondaries/ recurrences

Hi Tina

Sorry to hear your crap news!

Fingers crossed the carboplatin works well again and obliterates those b*****d little cancer cells.

Stay strong and try not to panic, easier said than done! Hopefully if the nodes and lesions are tiny they will be easier to kill off - xx

laura64
Member

Re: Triple negative secondaries/ recurrences

aww tina im so sorry to hear your news must be a bad day for us all my bcn rung today sd the op they put me forward for turns out to not beeing a option also cyberknife no reason yet as to why just not a treatment option will question this sorry not be on for a while been busy enjoying my chemo break and doing my lounge ready for xmas hi to everyone else hope your doing well feel down today and really upset but a we know our situation dont we big hugs tc laura xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Oh Tina, so many hugs sent your way. You know Carboplatin has worked for you before!! It's just a horrid, unfair, cr** disease.

More hugs,

Sadie Xx Xx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi ladies
just a quick update from me. I am back on chemo next wk following progression on latest ct scan. There are multiple nodes in neck, chest+ clavical. All very tiny but more showing than last time. There is also a very small but suspicious nodule on left lung and 2 small lesions on my liver 😞 My onc insists it's all very small etc but still very scared + upset. I'm puttin on a brave face (as ever) but naturally panicking. She thinks my breathing probs unrelated to the possible single lung met. She said it's possible there could be some activity in my windpipe, or maybe a node/ nodes nearby ate causing some restriction. Whatever is causing it, I'm hoping the carboplatin works as well as last time.
Love to all, tina xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi Sarah, I'm sorry I can't help, but just wanted to welcome you nd say 'Hi'. My story is different, but I'm sure someone will be along soon who can help.

Hugs,

Sadie Xx Xx

sar79
Member

Re: Triple negative secondaries/ recurrences

Hi everyone
i hope you dont mind me joining your thread. Im sarah and im 31 years old. I was diagnosed with bone mets in april shortly after finishing TC chemo for hormone neg cancer. i then tried EC chemo but was taken of this as it wasnt working and a new lump appeared in reamaining breast. this has turned out to be hormone pos cancer 5/8. i am currently on xeloda chemo and managing good on this. after a few bad months of being told cancer spread to lungs ( it hadnt but was pleural effusion) my consultant wouldnt let me have mastectomy as he said it was pointless and i was too ill???. i went for my apt 2 weeks ago and he said that i can now have it done more for piece of mind. does anyone have any info on the benefits of this. im in two minds because i have two toddlers at home and feel rather selfish for wanting it done. does anyone have any words of wisdom?
hope u are all well xx
sarah

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Thanks ladies, my nerves are shot + Ive got a real sense of dread in the pit of my stomach. Mum + hubby coming with me. Will post later with news.
Love tina xx

SadieL
Member

Re: Triple negative secondaries/ recurrences

I'll second that.....

Hugs to all from hibernation, feel so yach!!

Sadie Xx Xx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Hi all!

Love and good luck to Rachel and Tina for scan results.

Sarah x

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Thanks rachel, when do you get full ct results? Hope the travelling to+ from the christie isnt wearing you out too much. Sorry to hear about the fluid around your lungs- I know you have mentioned it before but its all pretty scary I know. Im sure your new team will have a plan in place when you see them next- Ive heard of a procedure where they put talc in the cavity to stop the fluid building up so maybe this will be an option for you? Keep us posted xx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hope you feel better soon tina,its so easy to pick up these things from our little ones isnt it, i remember it well.good luck for wednesday have got everything crossed for you,had my heart scan today he was a lovely man but asked if i had an implant as my only breast is huge and rock hard so that made me smile a bit but he said heart was ok but could see lots of fluid around lungs and i have been so breathless this week so will have to see what ct shows i too am dreading it tina,love to everyone still typing with left hand so keeping posts shortish but thinking of u all hugs xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hello ladies
Hope everyone is as well as can be today 🙂
Sadie and jo great to have you both back. Sadie it sounds like you had a ball Im so glad! Jo so sorry your symptoms spoiled your break somewhat but as you say, thank goodness for 2 nice days with the family xx
I'm not doing loads of personals today sorry girls but I'm not a bit well and writing from my sick bed! Dan was really poorly all last wk and Ive got it now (serves me right for still snogging him whilst he wasnt well lol!). Been in bed all day, sinuses terrible, sore throat, pounding head etc. D-day is this weds, terrified if Im honest 😞 Feel really angry that Ive just been sent away and left to deteriorate. Im just hoping and praying that things arent too far gone and the carbo works again for me...
Good luck to all with treatment this week and to those awaiting scans (rachel and rhi and anyone else too) xx
Speak soon xx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi ALl

Am sorry about your nails Sandra - sounds awful.

I am so glad you enjoyed paris sadie and had a good time. Is it your spinal met that means you need the wheelchair. I too have spinal ones so know they can be so painful. I had MRI and said new lower ones but the pain has gone again so hope is the chemo as Oncologist doesnt want me having radiotherapy to lower area as where all bone marrow made.

I hope you have started treatment again rachel and sounds good to have the trial. Hope Tina something sorts for you to relieve your stress. Check out the local electrical chemotherapy as may be good for you with local disease if no other mets.

I got to center parcs and felt rought from chemo first day and then had two great days on a bike and in pool with my little boys and almost forgot my position until sharply reminded on day 4 of 5 when pain hit again for the liver. I was in a lot of pain and sevredol did not control so last 2 days spoilt and was sick all way home on motorway and into next day so not a pleasant ending to holiday. Still had nice 2 days. Morphine has not made me sick like that before but must have been with pain. Think is chemo working in liver ( hope getting rid of again ).

I am back to marsden this week for testing for androgen receptor and a protein inhibitor I think.

Found first cycle capectitabine and gem very tiring and nauseous and only had first dose not second booster week two. I start again next week.

Hope others all doing as well as can and great that we can still get away and enjoy these little breaks as you reminded us sadie.
love jo x

Sozza123
Member

Re: Triple negative secondaries/ recurrences

Hi
I know that being triple neg can get a bad press but just wanted to say that at my hospitla they say that it is actually better then being hormone + cos you can't get rid of oestogen from your bodies.
I think that it is a random thing that happens in your body at that time. x

Sookie
Member

Re: Triple negative secondaries/ recurrences

Evening all
Sorry haven't been posting this week after jumping in on the site only a couple of weeks ago - but have had my daughter down from Uni for a few days which was lovely, and what with a bone scan, cat scan, chemo, blood tests and Surgeons appt (you all know the routine) it's been a mad 10 days. Have had my second gem/carbo so next week is a week off, luckily they got a vein first time this week - so no buckets of warm water swilling about, and SO far SE's have been minimal. Surgeon seems to want to operate a.s.a.p but I am up for discussion at next weeks MDT meeting and then see ONC next Friday- I feel a bit in between opinions at the moment.
Gingerbud thanks for your best wishes - the scans show the recurrence but otherwise ok according to my surgeon - I really hope so.
Glad to hear Paris was so good Sadie - I am off for a bit of Disney magic tomorrow when I polish my princess tiara and go and see Disney on Ice in Birmingham.
I hope you got to Centre Parcs Jo.
The chemo unit I go to differs to yours Sadie as I don't see a doctor on that day so it is purely in, chemo, and out again.
Well still buzzing with my last steroid dose so off to find a good film to while away an hour or two.


Wishing you all a good night xx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Sadie so glad you had a fubulos time... Sounds like it was just what you needed.

I had my appt with oncologist yesterday to discuss whether I will get rads or not. She kept us waiting for an hour and a half and didn't apologise just said she was sorry i had cancer again! She thinks tumour is probably too close to radiation field but will need a CT at end of Chemo so they can see properly where I had surgery and where Iv been treated before. So still none the wiser really but I have consented to rads if I can have them. Especially as she kept going on about my margins.... My surgeon said 1 margin was under 1mm but it wasn't anything they would worry about.

She did say it was good because it was in the margin and not at the margin. So there was still less than 1mm of normal tissue but the margin is the reason she thinks I should be having rads. And although I haven't had a full aux clearance she said I would pretty high risk of LO having a level 2 clearance.

Oh the joy!

Love to all

SadieL
Member

Re: Triple negative secondaries/ recurrences

Hi All - Back from Paris and we had a wonderful time. The best thing was NOT thinking about the big 'C' first thing in the morning, last thing at night - oh yes - and during the day too!!! Doing things TOGETHER as a family - was wonderful and my 12 yr old pushing me round the Louvre in a wheel chair was hillarious!!

Sandra - Your poor finger nails. On taxol / avastin, mine were not as bad as yours, but as soon as the taxol stopped the nails started to get better. So, hope the same for you!!

LuLu - Are you getting the rads to your chest wall?? So sorry about your friends - so young!! How are you getting on with injecting yourself?

Tina - I wish I could give you a real hug - you sound stressed! How was the funeral? How was the Manchester Hilton? Did all 3 of you go, or did you leave your little man behind? I hope Wednesday is positive and you feel looked after!

Rhi - well done getting to the end of your rads. What a long journey. I hope you had a friendly driver?

Lav Lassie nd Joey - Hi - how are you both doing?

Sarah - Hi and thanks for your nice comment!! I said HI to Paris for you.

Wendy - You said 'gemcarb - most people cope without too much trouble' but Im on only CARBO and i struggle - so you are not lazy!! (unless we both are!!!)

Rachel / FQ - Left hand typing, well done, but what a pain!! Gosh you are having a lot of scans - glad they are being thorough. I do hope it is more positive than you rear.

Hope / Jo - Did you make it to Centre Parcs? How was it? I do hope your pain was under control nd you enjoyed the water slides?? Have you thought of a Hickman line cos of your veins? Ive had one since feb and LOVE it! Sounds odd - but no needles is a godsend!

Sookie - you too - have you thought of a Hickman Line? My chemo is sooooo loooonnnngggg cos.......I have a 9am appointment, but the Reg does not arrive till 9.30. She then has to sort her self out nd I get seen about 9.45. (If I arrive later that 9am they put others in before me!) Then they order the drugs that can take and hour or so.......and so it goes on and on!! There must be a more efficient way of doing it! It is frustrating.

Hugs and smiles to you all nd hope you enjoy bonfire night. The weather looks better tomorrow than today. Pouring with rain here!

This time last year I could hardly walk and was on megga doses of morphene based painkillers cos of my spinal met. This year I have just walked round Paris and enjoyed Disney! What a contrast. I guess Im just glad to be here now and hope this contrast gives hope to some of you who are physically finding it hard at the moment!

Sadie Xx Xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi Ladies
Hope your all doing "ok" today.
Tina - so sorry to hear of the loss of your friend. As Lulu said it's so bloody unfair.
Good luck to you all on yr appointments coming up in next week, thinking of you all.
I should have had more chemo today, but onc canc cos of worsening finger nails, (taxol), but having avastin again next week. Next app with onc is end of nov.
Luv n hugs to all
Sandra xxx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

Good luck today Rhi. I'm off to see my onc this afternoon too to see if I wil be suitable for chest wall rads as previously had to both breasts and MDT thought no def shouldn't have them but surgeon thinks def should so off for an assessment to see if it's a yay or a nay.

Got nystatin for sore mouth it's def better than it was but still bleeding and puffy and feels like it's burning... But I sleep again last night. I'm been checking my temp before bed and if ok I'm taking two paracetamol and I'm sure that is helping.

Tina so sorry about your friend. Bloody unfair disease Iv lost 3 freinds in the last 18months all younger than me (36 a d 37) and two only had 1 year from diagnosis.... Both with young kids too... It's just so sad 😞
Glad your appointment has come through sooner. And try to enjoy your weekend in Manchester.... Make some memories 🙂

Love and hugs ladies xxx

Lulu xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hi ladies
just a quickie this morn. Had a letter yesterday saying my appt is next weds not fri so 48hrs less to wait! Feeling really rubbish, my neck has started aching now too. Going to hav2 try + not lose my rag next week- think it's wrong that tgey are just leaving me to let this disease progress freely 😞 Was asleep by 9pm last night + was hoping for a lazy day tday but my boy still poorly so will hav2 keep him off nursery...
Rhian well done with getting through rads 🙂 Hopefully it'll really improve ur shoulder. I also found rads exhausting + if u hav a long drive too, I'm not surprised your shattered. Any news on ct results? Enjoy ur pj day X
Rachel good luck with scan at the christie tmoro x
wendyglad ur coping ok got everything crossed for ur scan in a few wks x
hope everyone else is ok x
thanks for your support about my friend. It's the funeral tmoro, lots of us from clinic are attending. She had a terrible time + broke her neck amongst other bones, the mets were so bad. We are going to Manchester for the day + night straight after. Hope I'm not on too much of a downer as it's been booked since my bday. Hubby knew I wanted to stay at the Hilton so he booked it as part of my bday pressy.
Love to everyone xxx

Rhian
Member

Re: Triple negative secondaries/ recurrences

hello everyone, thinking of you all. Had last Rads (10) today, haven't posted much as the journey to cheltenham from wales bloody hard work rads this time round has knocked me sidewards. i see onc on thurs find out then what next going to try and just potter about tomorrow stay in my pj's all day

love to everyone

rhi xx

Lavenderlassie
Member

Re: Triple negative secondaries/ recurrences

Sending love to you all, especially Tina, so sorry to hear about your friend.
Lavender
xx

sarah68
Member

Re: Triple negative secondaries/ recurrences

Love to all on here. So sorry about your friend, Tina.

Love, Sarah x

wubbly
Member

Re: Triple negative secondaries/ recurrences

Hi everyone

I've been reading, although not posting as things are moving along just as usual. My symptoms still seem to be better than they were, though hard to say if they are still improving or just staying the same. I really don't want to get my hopes up I suppose, just waiting for the scan results to find out.

I've got a scan booked in for the 18th or 19th of November so will find out soon afterwards what is going on, I hate that week of waiting - don't we all!

I was due to have another treatment tomorrow but I've got a nasty cold that's gone to my chest. I feel okay in myself, no temperatures or anything, but my Onc wants me to have a week of antibiotics to be on the safe side. I'm sort of relieved to be honest. The side effects aren't too bad really, but I'm just so tired all of the time. I'm sure it's a combination of things, rather than just down to the chemo, as everyone else seems to manage GemCarbo without too much bother. I think I may be genetically lazy!

Tina, I hope this week flies by for you and get positive results from your Onc. The waiting around is just dreadful. I really hope things are a lot brighter than you feel.

Fairyqueen, I hope everything goes well for your appointments on Friday and Monday. Life seems like an endless round of appointments sometimes, still it is nice to know they are looking at everything for you. I hope you are wrong and you get good results.

Sending love to everyone

Wendy
xxx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hi to everyone sorry my posts are few and quite short but having to use left hand as right one still painful,am always thinking of all of you and love the support on here, hi tina i too am bit wheezy but they did ask at the christie if i had the pleural effusion drained but i havent but i am back there friday as they want a ct done and they have me in for another bone scan monday and heart scan they are very thorough if they get results from laST Bone scan they will be happy with that but they are getting everything moving and want to get started so am feeling good that they are on the ball,i do feel this disease is galloping just feel different so i pray i am wrong,as i say i send love to you all and my best wishes hugs rachel xxxalso can i add tina i am so sorry to hear you have lost another friend there are certainly no rules in this bc life hugs xxx

Gingerbud
Member

Re: Triple negative secondaries/ recurrences

Hello ladies
I'm a little confused as I posted on here a few days ago but there is no sign of my post?? Its been very quiet on here, I hope all my TN buddies are ok?
Rachel- I know we've chatted on another thread but so glad you are feeling more positive about your treatment now 🙂 Any news on the mri results? When is your 1st chemo then? Good luck x
Lulu- how are you feeling after your first swamping last week? Hope the se's are mild and you are doing ok x
Sarah- so glad your arm is finally lots better. Hope you are well x
Sadie- Hope you are having a ball in france with the family. Me and hubby plan to go back to eurodisney in december all being well. Think Dan will love the xmas festivities and it'll make it well worth another visit x
Jo- Sorry to hear there has been some progression but Ive got everything crossed that the gem-carbo will kick in quickly, relieving your horrid symptoms and you are able to get to centreparcs and have a wonderful time x
Sandra- How are you feeling? Hope your nails are ok and you have been able to continue with chemo x
Rhian- how are you feeling? Any news on scan results? Ive got to wait until 11th Nov! Good luck x
Joey- hows the treatment going? Good I hope x
Wendy, havent seen you post for a while. Hope things are going well x
Sookie- I would defo look into your private health to see if they will pay out for your chemo. Any news on scan results? Good luck x
Hi to everyone else reading including Linda, Laura, Kelly, Jo (Tara) and everyone Ive missed too 🙂 x
Nothin much to report here, awaiting scan results when onc back off leave next week. Pretty worried due to increased pain and swelling in chest wall, muliple new nodes in neck around clavical, and no sign of this wheeziness buggering off either. Feel like Im being left to fend for myself to be honest- havent had any treatment since MAY!! I feel very lucky to have had this break so we could have a more normal life, holidays etc but there comes a point when you want to be proactive and fight against this obvious progression! Another lovely friend of mine from my clinic passed away last week. She was the first patient I spoke to after my dx and she has had a terrible time, getting secondaries quickly despite having a small, node neg hormone positive cancer. Seems there are no rules with bc- its just the luck of the draw...
Lets get this thread active I think we all benefit from the support 🙂
Love to you all xxx

Lulu34
Member

Re: Triple negative secondaries/ recurrences

glad you had a positive appointment rachel but sorry to hear you hve more spread to the other side xx

jo sorry to hear you have progression in your spine... hopefully chemo kicks it into touch soon xx

sookie im feeling lots better today... i dont really remember too much about yesterday as was pretty spaced out... not looking forward to giving myself my g-csf injection in an hours time.... yikes

love to all
Lulu xx

Sunnyty
Member

Re: Triple negative secondaries/ recurrences

Hi Rachel
Glad you have a plan in place now, it's a relief isn't it, when you know which path your going down next, and yr backup of gem carb.
I've been on taxi/avastin for last 12 wks, good luck to you, hope SE 's arn't too bad for you.
Hugs
Sandra xx

fairyqueen
Member

Re: Triple negative secondaries/ recurrences

hello all just a quick update from me ...went to the christie today they were lovely saw lady doctor who has offered me a trial of paclitaxel/avastin/metmab or gem/carb think am going for trial as that will keep gem/carb in reserve..so am in care of christie for now which is weekly trips its about 1 hr 40 mins to get to but am just pleased they can offer things without funding issue, they will give me a ct too and it looks very lkely i have cancer in other breast i thought it was ibc cos it has got lots bigger but they said its not unusual with tnbc to metasize to other breast... so thats it for now at least i have a plan inplace and backup of gem carb...love to you all rachel xxx

hope15
Member

Re: Triple negative secondaries/ recurrences

Hi all
I have private ins too sookie and could have chemo where I wanted - buoa. Only took out 3 months b4. Is a blessing with speed from sounds of sadie and jos experience but think NHS treatment as good and was an NHS manager.
MRI today confirmed pain from new spine lesions yet on ct looked stable. Couldnt have radiotherapy as had gem/carbo yday and Onc said radiotherapy would affect bone marrow and gem carb already affects counts.

Now have liver pain so hoping chemo gets to work as want to enjoy centre parcs nextweek.
Hope Paris is great sadie.
Jo x

Sookie
Member

Re: Triple negative secondaries/ recurrences

Evening all
Jo/hope15 - yes it sounds like we are having same treatment - my veins went into hiding too - so I sat with my hand in a bowl of warm water to tease them out which did the trick in a few mins. My next visit to my second home is Sat for my cat scan.
Lulu - Your reaction sounds pretty scary - hope you are ok - tax is evil stuff in my book!
Gingerbud - cats are such ungrateful creatures at times aren't they? you try to help them and that's how you get repaid - I have known it take 3 of us to hold our cat down at the vets - hope you are ok.
I have private health care but they would only cover my chemo if it was administered at home (which I didn't want) so I went back into the NHS for chemo. I am now wondering if I too could claim any thing back, I will have to investigate.
Sadie - how do they manage to take soooo long with your chemo?
Glad you had a good day at safari park - I've had some good times there in the past.

Goodnight to all xx