Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
1161

Hi Tina, Chest cramps sound horrid! I prescribe a week in the sun!! Ive not heard from joey for a couple of months - a bit worrying! I will email next week nd see how things are! Im soggy!! But hope to improve by sunday - counting the hours - Im not joking!!! Daughter in a massive netball match nd want to watch!! Glad u r ok nd hair hanging on in there - fingers crossed!! Delighted se are minimal. Hope it carries on this way…

Hugs nd smiles (even if it is a bit of a tired smile today!) to all.

Sadie Xx Xx

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Tina, Tenerife sounds marvellous, I hope you can all get away, I’m sure Dan would have a ball. Just lovely temperatures now too.

Sadie, I do hope you’re feeling a little less exhusted, I’ve found gemcarbo so tiring, it’s just floored me for energy. A break would be wonderful.

I’m not sure what’s going to happen with me, but it’s definitely not more gemcarbo as I had a bad reaction today, with treatment number 8! Not at all nice but it’s over now and, other than laboured breathing, things seem pretty normal again now.

I’ll find out on Monday hopefully what the new plan is and of course let you all know.

Sorry for the typos, I’m still shattered

Wendy
xxx

1163

Hi all
Wendy- so sorry to hear uv had a bad reaction to the chemo :frowning: I too, had an allergic reaction to carbo number 8! Hope it wasn’t too scary for you and you’re feeling loads better now. Hopefully you will have a new regime sorted soon. Do let us know how u are and how u get on Monday xx
sadie- hope the se’s pass quickly and u are well enough for the match on Sunday. You have been through the chemo mill, I’m not surprised ur exhausted! U really deserve a chemo break + I’m praying u get one! Very soon! Xx
hi to everyone else on here, too late for a long post but As always, I’m thinking of u all + sending good vibes ur way :slight_smile:
love tina xxx

1164

Wendy sorr to hear you have had a reaction… I had a reaction to my first tax… With hallucinations and turning bright red… The gave me piriton prior to the rest of my sessions and it’s been fine since… So don’t know if I’d have had a reaction to carbo as it was after tax… But i do get laboured breathing too and been checked for cardiac and clots but all normal and think it’s just the Chemo… Hope you get a suitable alternative.

Tina good luck getting to Tenerife… Iv been loads of times and love it there.

Sadie hope your daughter does well with her match on Sunday and that you are wel enough to enjoy it.

I’m doing ok just turned the corner and feeling a bit better and energy nphas picked up so can actually go up the stairs more than once a day! V angry at my daughter though who has emptied £1000 from her savings account and spent it on a load of absolute crap off eBay… And is actually overdrawn… She’s 20 but has a mild learning disability and barely spends any money and just went bananas on Christmas eve! She could have bought a second hand car or a holiday or something useful… It just makes me mad and so annoyed at myself that I didn’t remove the money from her account! Anyway rant over now!

Good luck and lots of love to all you ladies
lulu xxxx

1165

Dear all
Sorry you had a reaction Wendy. I thought people only had 6 gem and carboplatin. I’ve had 4 and find it very tiring , much worse Than 18 taxol so amazed you have tolersted 8. I have two more to go but need blood transfusions every other one. Like sadie they are talking of a possible chemo break if scan good in 6 weeks. Clinically the carbo doing a good job but I get a lot liver pain 7 days of each cycle.
Is great avastin working Sandra. I hope you are okay Laura and you are feeling more energetic lulu soon,
When do you finish sadie as think you are ahead in cycles to me. Hope you get a surge of energy to see your daughter as is hard being so tired all the time. Thinking of you Rachel. Is good that eribulin does not sound too bad Tina. You are so good at getting away. I wish we could be more adventurous to go abroad but think I couldn’t manage with 4 kids as find even going in this country exhausting.
Would you mind telling me where to get easier tea as may help my bloods I think.
Love jo x

1166

Hi all talk about gd start to new yr I’m back on chemo my hubbie been really unwell had to have chest x ray they think it just a inf but got to repeat it in a month god i hope it’s nothing I can’t cope with any more bad news my son is in bed with flu and temp I’ve a sore throat for gods sake just wat i need I hope u are all well tc Laura

1167

hello all, just a quick update have been so so poorly for weeks breathing awful anyway turns out to be large clot on lung so in hosp for aweek and now on warfarin, the chemo hasnt made any improvemnt in my chest wall and painful remaining breast so really dont know what onc will say thurs have a gut feeling all treatment may end as none worked and now warfarin adds another prob with chemo,in my heart i know the disease is winning just have to accept the fact which is so bloody hard.love to all of you and sorry laura that you have crappy start to new year hope things pick up soon love and hugs to everyone xxxx

1168

Hi Rachel
thanks for posting, I was getting worried about you. So sorry you have had to go through more crap with the blood clot but I’m glad to hear the fluid hasn’t returned in your lungs. I really hope your fears are unfounded and there are more treatment options that may well help you. Be sure to ask about eribulin- although I realise there are issues now with the warfarin. Always thinking of you and hoping you turn a corner soon and get some better luck. Lets know how yur appt goes xxx
jo- I will find out supplier of essiac from my auntie and let you know the details. Xx
laura- chin up! Hope xeloda is being kind to you so far + hope your family are soon well again xx
love to all xx

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Hi Rachel, Thank you for taking precious time to post. I know we are all different, but on a similar journey, so, if it helps - we are with you, thinking of you nd send you heaps of energy.

Hugs and more hugs,

Sadie Xx Xx

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Rachel sending big hugs… Hope you get more chances to fight back… Thinking of you and sending much love and positive vibes.

Love lulu xxx

1171

Hi Rachel,

Love to you, you’ve had a hell of a time. Really hope that something will help you soon. Loads of love and good wishes,

Sarah x

1172

Dear Rachel
It is so lovely to hear from you but am sorry you have had such a hard time as must be frightening with breathing difficulty. I hope and pray there is some other treatment for you. I was diagnosed following collapsing from a pulmonary embolism, clot on lung and the investigations revealed secondary bc. I was on daily heparin for blood and chemo for 6 months so is possible to combine. Wishing you strength
Love jo x

1173

Hi Ladies - Phew, just surfacing! That was a hard one. Floored me and was unable to do anything. Anyway - on the way up now and getting a bit of energy.

Hi Hope / Jo - I hope we do get the break they are talking about for us. But hope it is on the back of GOOD scan results. Im not sure what happens if scan results are not as good as we want and our bodies are in need of a chemo break - a bit scary! I want to talk to my ONC about a referral to the Marsden to see if there are any good trials (? androgen receptors?)to keep this under control! But she wants to see scans first (February!) - so I will have to be patient! Not easy for me!!!

Sarah/68 - Hi! Hope you are having a good weekend!

Lulu34 - What a difficult suituation with your daughter! Is there a ‘cooling off’ period you could use or is it too late? Complicated! Hope you have found a solution - could you sell it back on ebay?? You cant keep watch over everything - esp on bad weeks.

Rachel - I hope today is a good one for you and you find things that make you smile and give you a lift.

Tina - Hope you are still relativley SE free - fantastic! Booked hols yet? MIA did cover me for cancellation - did they say why they would not cover you for this? Odd!

Wendy - I hope you get a good plan in place on Monday! Sounds like gemcarbo has reached the end for you? It is exhausting - and im only having the carbo!!

Laura64 - I hope your OH has his x ray results soon and you get to the bottom of the problem! Hope your son has improved.

Sandra - thanks for tea tip! Glad Avastin is ongoing and GOOD!!

I wish i knew if / when / how long chemo break so I can get my head arround it. I have had active and intense treatment since my secondary diagnosis in Oct 2010 and now its 2012!! Just feels odd to be ‘left’ - except i will still have the bisphosphonates. Ladies who have had chemo breaks - how have you got on? Any tips? (Other than try and fit in as many holidays as poss!!)

Hugs to all mentioned and not mentioned - not sure where I would be without you all!

Sadie Xx Xx

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Sadie all I can tell you is I fin chemo in aug and have just gone back on chemo I was really hoping to enjoy my break but with rhumatoid it wasn’t like I hoped and then was bad news in oct so I knew I was gona go back on chemo which spoilt it really but I hope u don’t have that worry and can enjoy y break and fit in as much as u can gd luck tc Laura

1175

Hello ladies
hope you have all been able to enjoy the lovely winter sunshine this weekend :slight_smile:
we went to Blackpool for the day yesterday, went for a walk along the prom and then to the zoo, which was fab. Been to the marina by us today to feed the ducks + swans and then for a nice meal. Making the most of tge weekend before chemo on Tuesday! No sign of hair loss- it’s day 18now. Had a bit of scalp soreness yesterday but nothing since. Feel like my nodes are bulging so no sgn of improvement as yet but have to remind myself that I have only done one cycle…
Sadie- hope you have felt well enough to go the match today? In terms of the treatment break, my advice is to cram as much into yur chemo break as possible. But don’t exhaust yourself as you have done an awful lot of chemo back to back. As you know, we did lots and had a few lovely holidays. It was nice to live a fairly normal life- no taking my temp, worrying about picc line etc. I ended up having nearly 6m off chemo but if I’m honest, it was the first 2-3m that I enjoyed most. After that I was pretty anxious and I wasted alot of time pushing for scans and treatment, after realising the b*stard bc was having yet another party in my nodes!! I think it’s imporant to get the right balance- a break off chemo is great if you can swtch off to some extent and enjoy it. I am sure you will be able to do that, with your lovely family. After such a long run on intensive chemo, I’m sure a break will be just what you need. Here’s hoping the carbo is still working well + you get the reassurance u need so u can take that break with confidence :slight_smile: xx
love to everyone on here,
tina xx

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Rachel
Sending you love and hugs, thinking of you,

Hugs ((())))

Hi to you all, n hope your doing ok today

:))
Sandra xx

1177

Hi sadie
My onc referred me to marsden research unit as soon as I had finished taxol as takes so long for testing etc and we wanted results known and to consider any options after capecitabine or carboplatin. I ended up on carbo but hoping one of their drugs may be an option at end carbo if scan ok. I had testing nov and still waiting so maybe best to get referral going now. Like you I’ve been on chemo since jun 2010 so want a break.
Glad your hair hanging in Tina. Will you try cold cap again.
Good luck to Wendy I think who is having scans this week. Sorry if I’ve got wrong but get in a muddle so easily now. 5th gem carb tomorrow.
Love Jo x

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Hi Jo - thanks for advice. Ive pushed scan forward (30th Jan)and am waiting for an appointment with ONC (on holiday this week) - so we will see!! I think we seem to be following a simmilar path - hope your results come through soon!!

Hi Tina - I made it to the match but was seeing at least three balls at a time!! One of my friends whos daughter also plays is a GP and she was a little concerned about my inability to stand - but I told her it was normal!! Anyway - our girls won by heaps!! FAB! Glad you had a good day out before tomorrow. These weeks go by so fast! Thx for your chemo break tips! Much appreciated.

Hi Laura - thx for your tips too! Im sorry you could not get as much time off as you hoped! it is sooooooo unpredictable!

Hugs and Smiles to all - esp Rachel. Hope you are having a good day!

Sadie Xx Xx

1179

Hi everyone, just catching up with the latest posts.

Sadie, glad you managed to get to see your daughter’s match. A great result!

Jo, your regime sounds much tougher than mine, I’m not sure how I’d cope with blood transfusions on top. My treatments have been every 2 weeks but at a lower dose, although I’ve felt absolutely shattered all the way through it too. I do hope you manage to get a break in treatment soon.

Laura, sorry to hear things aren’t so good for you right now. I do hope that everyone is feeling better soon and you get some good results from this chemo.

Rachel, I’m really sorry to hear that you’re having such a tough time of it at the moment. Sometimes it’s just one thing after another and it’s so very tiring just trying to keep going. I’m sending you lots of positive thoughts and vibes and hope that you feel some improvements soon.

Tina, hope you’re still not suffering too much on the eribulin. How is the hair holding out? When will you have a scan to see how it’s working for you? I do hope you get some good news.

I’ve eventually had the results of my bone scan and CT scan and it’s pretty much as I thought. Despite the earlier promise, I do have some sites in my bones and most of my existing sites in lungs, liver and nodes have grown since the last scan. My Onc admitted she was surprised at the growth so quickly after the initial good response.

So it’s onto vinorelbine, oral, for me now. The good news is my veins get a much needed rest and I shouldn’t lose my hair. On the otherhand, I’ve not heard much about this chemo so I’m not feeling very confident it will have the desired effect. I’m getting so tired of trying new things and nothing seems to hold it back, it almost feels pointless sometimes.

I’m not really down in the dumps, even if I do sound like it, I’m just relieved I haven’t been put onto something really heavy going, I think my Onc knows I’m struggling at the minute.

She is also going to arrange for me to have some fluid drained from my lungs, to hopefully improve my breathing a little.

I do hope everyone is keeping well and keeping these wee blighters at bay. Sending love and good vibes to you all.

Wendy
xxx

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Hey wendy, so sorry to hear the scan results weren’t good :frowning: Its an absolute shitter to put it mildly- whether u were expecting it or not. I take my hat off to you as you sound do strong abut it all, which is hard after so many hurdles along tge way. I’m glad they have a new regime planned as it always takes the edge off the disappointment, knowing there is something else up their sleeve. I too have heard little about vinoralbine especially with tnbc but it was mentioned to me when I went the marsden. I hope it’s kind to you but hard on the cancer. Did u ask about eribulin btw? I only ask because it’s only given to ladies like us who have had many treatments + early results are very promsing. It’s the ‘easiest’ chemo iv done so far, although it’s an IV chemo. Something to ask about maybe?? Wishing you all the best, keep us posted. Xxx

hope everyone else is doing ok. I had my second cycle of eribulin today. Bloods all fine, way above limts so pleased about that. Back in next tues for day 8 infusion + to see onc. Still got a full head of hair so I’m starting to let myself feel optimstic that i won’t lose it all.

Love to everyone xxx