Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
801

Hi all!

Really pleased for you, Laura, with your scan results! Lovely to have a break from chemo. Sorry about your chest wall pain, Tina. Glad you enjoyed your Christmas shopping spree! £200 for Rihanna tickets is crackers!! Is that the going rate? - I haven’t been to a pop concert for 10 years, mind. Last saw The Beautiful South - what a waste of money that was!!! - They milled around in a bored way, like they were waiting for a bus, or something! Sadie - I wanted to say Happy Birthday to your daughter for yesterday - hope you all had a great time! Hope you feel better in between chemos.
I’ve been in lots of pain with my arm/back/chest for the last couple of days (could hardly move on Sunday!), though it’s easing now. Went to the Live and Deadly Show on Sun. and think I overdid things, as well as having massive coughing fit which started all the pains up again. Didn’t see Steve with his snake/spiders etc up close as Dan went into the tent with his Dad - only 1 adult allowed and dad is the photographer! We saw Naomi with her birds of prey and she was lovely. Kind of glad the hot weather is over now! Hope the rest of you on this thread are coping OK,

All the best, Sarah x

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Oh, wow! Laura! That is great news!
I am on holiday and finding it very difficult to find wi fi and catch up with you all but have got online and send you all good vibes
Lavender

803

hi laura that is great news woohoo xxx

804

Hi ladies
Hope your all doing ok :slight_smile:
Had my ct scan last week, been to hospital today for results, good news, the avastin/paxitaxel is working and shrinking the tumors in lymph nodes.
My onc has applied for more funding for avastin, so fingers crossed, we can carry on with it.
I am on antibiotics for chest infection so won’t be having chemo tomo now… Wahay, got a week off. ( got 7 weeks to go)
Been keeping up with everyone’s news on here, and it’s been busy …

Hugs to you all
Keep on keeping on
Sandra xxx

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Sandra and Laura great news for you both xxx

Lxx

806

hey sandra thats great news just what we need xxxx

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Hey ladies :slight_smile:
sandra that’s great news fingers X’d the avastin funding is extended. Enjoy ur week off chemo x
Rachel- have u chased up ur scan? X
lulu- good luck for ur onc appt lets no wot ur treatment plan is x
Sarah how are u feeling? X
sadie- how u feeling? Hope the se’s have calmed down + ur enjoying the few wks off until ur next cycle x
linda, wendy 3xJo’s (!), laura, lavender, and anyone else Reading I hope ur all ok xxx

I saw my lovely rads onc today, he was pleasantly surprised by my chest wall. He said he thinks there is disease deep within the skin but much of what we can see is rads damage. He couldn’t believe how well I look .+ said how delighted he is about me responding so well to chemo etc etc. We had a long chat about my options + he really thinks more chemo now wouldn’t be wise. He said the node in my chest is really small + agreed there is one at my clavical, and also disease in chest wall, but thinks we should hold off + rescan in 3 months. He doesn’t want to waste a treatment option + said he’s hoping I’ll still be here when they do run out of options. I’ve hot to see me new onc again in the next fortnight but it looks like the decision has been made that things are pretty stable + so no treatment at this stage.
Not quite sure how I feel about it all- relieved to have this reprieve coz I’m enjoying a relatively normal life at the mo, but anxious too. But I really trust this onc, he’s lovely+ I know he has my very best interests at heart, so I feel a little more comfortable about things after todays meet…
Love to everyone
tina xx

808

Hi all

3 of you with good news, Tina you must feel a weight has been lifted after all the worry you went through re changing once etc

Sandra I’m sure they will renew your funding for avastin I think you are on the same as me - I’ve missed two on the trot now because my line was blocked and had the groshong taken out last Thursday & Hickman put in tomorrow so nil by mouth in 3 hours then back on the treadmill on Friday & got onc appointment too on Friday as got some outstanding questions for her.

Hope all you ladies aren’t suffering with too many ses - how are you Sadie we will have to get together again soon

I am thinking of you all even if not mentioned you

Hugs

Jo xxxxxxx

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Pleased with your good news,Sandra and also that the meeting with the rads onc.went well, Tina. Hope all goes to plan for you Jo (and Steve) - with the line replacement and treatment.

love, Sarah x

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Well done everyone so glad it’s all going well Tina glad u had gd meeting with rads onc I know it’s a worry but try not to I’m sure this is the best way what plans u got for your birthday? Hope everyone else is doing well my hair as just started showing and my eyebrows are well on the way just got to get shaped now love to all xx

811

Hello everyone

Just really enjoying reading the good news it really does lift my spirits to hear you doing well, just wonderful.

I’ve just had my second gemcarbo. The first one was okay but really did wipe me out for 2 days, so I’m expecting similar tomorrow and Saturday.

So far though, it does seem to be having a positive effect. My breathing really has eased and I’ve found I’m getting a lot more movement on my right side where the recurrence is. The swelling has reduced and the pain is much less noticeable, so fingers crossed it’s working as well as it seems to be.

I’m still working on getting to know everyone’s stories so will keep on reading, but wanted to say thank you all for your wonderful cheery posts. You all really keep me positive.

Love to everyone

Wendy
xxx

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hi tina thats sounds like a good meeting with your onc , i would love a good chemo break but dont hink it will come you make the most of it …it is only a week tomorrow since scan was mentioned so will give to monday then chase it up …am bit deflated as have written to several hospitals but no trials available to me but prof from christies said shrewsbury are excellent for treatment so that made me feel better lol … love to everyone xxx

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Hi girls
wendy- fantastic news about the improved symptoms :))) Really hope the gemcarbo is doing the trick. When will u hav a scan? Fingers x’d x
laura great news about ur hair + brows! Bets ur delighted! X
Rachel here’s hoping the scan date comes thru soon x
jo- good luck with tmoros treatment after all those delays! X
lulu- any news on ur treatment plan? X
hello to everyone else too :slight_smile: Hope u all ok
tina xx

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Hi Tina

I’ve not got a scan date as yet, usually it’s been 3 months after each new treatment, so perhaps around the same sort of timescale this time. I’m seeing my Onc in around 10 days time so I think I’ll find out then when she wants to re scan.

I’m sort of in 2 minds about it. On the one hand it would be wonderful to have confirmation that this gemcarbo was having a positive effect. At the same time I’m just happy to feel better and bad news would really put a downer on it all.

I was expecting a full on duvet day, after the last treatment, but so far I’m feeling fairly good. Long may it continue.

Hope everyone is well and feeling good today.

Lots of love

Wendy
xxx

815

treatment plan at last… but no start date yet… they are gonna call me with a date but will be between 17-27th.

i dont fit the criteria for the TNT trial tina but im getting 6 x tax and carbo… so seems even better than the trial which would do one or other… so pretty pleased with this… said im quite unique because its so unusual to have this kind of recurrence there isnt really any documented evidence on how to treat it but they are just using the best evidence they have.

wendy glad your feeling good after you treatment… hope it stays taht way for you.

FQ good luck with finding a trial and your scan when it comes.

Tina good news about about the rads damage (anybody else would be upset at this prob) and your chemo break… least you should have a chemo-free christmas which im sure you will thoroughly enjoy.

love and hugs to all you lovely ladies

lulu xx

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Hey lulu :slight_smile: Thats bloody FAB news that you’ll be havin tax and carbo. Defo the best case scenario hey?! I’m sure it won’t be a walk in the park but you will have thrown everything at it. Will it be a weekly or 3-weekly regime? Any more news on whether rads is a viable option? Keep us posted x
hope everyone else is doing ok + has a nice weekend. Bit of a contrast to last weekend when the sun was cracking the flags…!
Love to all xxx

817

Hi Ladies!

LuLu - So pleased the treatment plan is becoming clear! Thx for love and hugs!!

Laura - It is really interesting to hear youve been offered a possible lung op. Im watching carefully! If you get somewhere and my chemo contunues to shrink things I may be after more info!! Seems unusual as no one else seems to have relpied to your postings - but the Marsden are good at firsts!!

Sarah - Thx for my daughters Happy Birthday!! We had a lovely time!! Need to be here for many many more! I hope your pain is better?

Lav Lass - Good Holiday?? I hope so!!

Sandra - Great shrinking news!! I hope you get more Avastin funding. Is this with Chemo too? I looked into just Avastin and they said it is not licensed without a chemo (I think it was just Taxol??)

Tina - WOW - great news. But the BEST news is to hear you have trust in your team now. Well done!! So glad youve found this.

Jo (and Steve) - Hope Friday went well and you got your chemo at last!! Hope it has knocked you too much! Xx

Wendy - Glad GemCarb was OK (ish!!) for you. Im just on the Carb and suffered for a week. So, well done!!

FairyQueen - Sorry youve not found a trial. Have you spoken to the BCC helpline - they seem to know loads! May be of help?

Hi to EVERONE ELSE!!

Im ok this week. The first week after chemo was HORRID (sorry if ive already posted this but think im still in shock!!). But this week - feel GREAT! So, lots of quality stuff!! Went to the BCC Secondary day in Birmingham and met wonderful ladies and a yummy lunch, done lots of netball watching, took son and OH bowling, cooked meals (WOW - normal life!!) and watched the rugby world cup (but the less said about that the better!!)… oh yes, and updated my Will. A HORRID job and I hated it but feel good it is done.

Im still looking into Tomotherapy and have emailed the Department in Birmingham directly to see what they say. My Onc was v unsure but said she ‘thought it would not help’ but I need to be SURE before crossing it off the options list!

Just off to take my daughter to a party she knows nothing about. Her friends have organised it and kept it quiet!! I just have to get her there looking nice and knowing nothing!! A bit hard!!

Hugs and Smiles to you all…

Sadie Xx Xx Xx

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Hi sadie yes I was in shock when they sd I might be able to have op it depends on lung doc also they sd cyberknife might be a option they will talk to both docs and let me no also they sd if mets are stable they do reckon 2 I’m so plsed as my old hos wldnt even consider it my mets are v small and ive 2 maybe that’s why will update u all when I know tc hi to everyone else xx

819

Hi Sadie and all!

Yes, been on co-codamols and anti-inflammatories since Thurs and the muscle/rads damage pain is a lot better. My OH no longer needs to be called when I’ve visited the toilet! Lovely image! So glad you feel better and doing lots after last week’s chemo. Sorry about England with the rugby. Wales won though!! I don’t follow it particularly but the early morning matches are starting to wear everyone down! Hope your daughter had a fab.surprise party!

Love, Sarah x

PS - Thanks Belinda for your concern on other thread.

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Hi All
Sorry not been in contact recently -rough few weeks with little uns Ill and me trying to get over perpetual colds, chest infections. Was so pleased to see some good news from Laura and Tina about results. Is great to have treatment break for you both. I had node come up few eels ago and rock hard not budging :frowning:
Have taxol number 18 tomorrow and scan too so praying for good results and a treatment break but doubt it now a new nice popped up. 12 months of chemo in 16 months since giving birth is taking toll and just want to enjoy my 16 month old and 3 yr old as well as older two stepchildren as we all do without being tired and having out of circulation on chemo .

Have been referred for second opinion and for trial consideration for prostrate trial and another growth factor trial at mars den so ma have tissue typing done like Laura. Am sure seeing same prof you saw Laura so hope optimistic too.

Hope pain better Sarah and that carboplatin gets better sadie. Thought was well tolerated but that was said by an oncologist who also told me I could function as normal on 18 cycles taxol !! Think said wold agree not a walk in the park.

Hope lulu you are okay and Rachel. Am sorry you have so man delays jo with your treatment , I am fortunate in that regard as never wait and looked after very well when I read some of your posts.

Love jo (hope 15)