Triple negative secondaries/ recurrences

[system]

Hi Jo / Hope, Nice to hear from you nd hope you are better and all your little ones are OK. I DO hope your scans are positive and you get a chemo break, but you do not sound positive. Going straight from one chemo to another is hard but if that is the option…its ok!! The Carboplatin floored me for a week, but then two weeks off. After weekly Taxol it is much much much easier!! With good chunks of time to do cool stuff!! If i had to choose, it would be three weekly every time!!

Id be really interested to hear more about the Trials - may get myself a referral?? What is the name of the Prostate drug and the growth factor so I can look it up. Good luck with Taxol 18 and WELL DONE!! I know how hard it is. Hugs.

Sadie Xx Xx

[system]

Hello ladies
hope everyone is ok, been pretty quiet on here the last few days.
Jo (hope)- well done on reaching 18 taxols. That sounds very hard going especially with toddlers. You must be exhausted u poor thing. Will be keeping everything crossed 4 ur scan- when is it? Try not to panic about the new node as it doesn’t necessarily mean the chemo isn’t working elsewhere. How’s the liver pain? Wishing u all the very best x
sadie- so glad ur feeling better and enjoying the few weeks break before ur next carbo x
Sarah- so sorry to read uv been in pain really hope things settle down soon + u can finally enjoy being ned. Lots of love x
hi to everyone else too

I’ve been suffering with pretty bad anxiety the last fortnight- on and off but pretty bad when it happens. It’s a recent thing so I’m thinking it must be linked to the stress of feeling in limbo + not knowing whether I’m coming or going with oncs, treatments etc. I haven’t mentioned it as I know I’m very fortunate to be having this treatment break + to be feeling so well etc. But had a meltdown yesterday I seem to be ok if I keep busy but when the anxiety creeps in, it’s bad, palpitations etc. Think my wheezy chest is still worrying me + things still not finalised in work so it’s all adding to my stress levels I guess. On a brighter note it’s my 34th birthday next wkend Looking forward to that + all being well, we will be going to Tenerife for a week early Nov. Fingers X’d…
I’m going to book onto the younger women with secondaries forum day next weds in Manchester- is anyone on here planning on attending?
Thinking of u all
tina xx

[system]

Hi ladies
Hope your all feeling ok today
I’m feeling bit better now, still got a chesty cough though.
Sadie, I’m on avastin/paxitaxel, will be on week 12 on thurs, SE , still having nosebleeds, rash over hands, numb fingers and nails very sore n lifting off.
Well done Jo on reaching your 18th taxol, and your kept really busy with your 2 toddlers, well done!
Sorry that England is out of the rugby , but great news , that Wales is still, wahayy, great news isn’t Sarah, I will be watching again on Saturday.
Tina , meant to say hope your feeling better today, you could maybe get something from your gp if anxiety carries on. I know what you mean about keeping busy, I’ve taken up knitting again, aswell as doing loads of “take a break” mags and sudoku too.
Manchester is too far away from me(I live in S Wales)’ sorry, but hope you find someone to go with.
Jo - with hicman line, hope all went well with op n chemo last week.

Luv n hugs to you all
Sandra xxx

[system]

hi all, sadie hope your ses have worn off leaving you with some good days x
jo wishing for you good scan resultsx
tina am sorry to hear of your anxiety its a pig isnt it but hope you are looking forward to your hols x
sarah hope your pain is better from rads x
hi to everyone love to all if not mentioned you please forgive but do think of you all regularly x

well i have been seen by onc today capecitabine not working now as new lumps appeared,rang his sec yesterday and he saw me today ,arm still painful and fingers and thumb numb,he now wants a ct scan,mri scan and bone scan done,and is going for 2nd opinion at christies manchester for me before deciding next treatment, said he will hurry things along and get chasing things up am relieved in a way as knew deep down chemo had stopped working but as you all know is scary off treatment but will keep you all posted love to you all rachel xxx

[system]

just got mri for sunday and bone scan monday so my onc must have kicked butt x

[system]

Rachel I’m really sorry to hear about the progression on the capcetabine Glad ur onc has pulled his finger out + got urgent scans booked 4u. When will u see him for results? Surely carboplatin has got to be the next option 4u?I’ve found a new lump today in my neck. My onc is callng me in the morn + I’m gona push for a pet scan. Hope ur ok big hugs rachel xx

[system]

thanks tina he mentioned putting in for carb or getting second opinion so we opted for that, maybe they will agree with carb and get it quicker, so sorry you have new lump the horrible little sh*** just keep popping up dont they ? glad you are pushing for scan and hope results are quick as i know how anxious we all get, big hugs to you xxxx

[system]

Hi ladies
So cheesed off, did have the Hickman line inserted last Thursday but it took 2 hours instead of the proposed 45 mins & then it had to be shortened!

Went for my chemo Friday & don’t believe it put me back to week one of cycle one so between now & Xmas have 8 more chemo sessions & 3 Fridays off, then will get ct scan & brum have requested a Pet scan too so they will both be in the new year. To top it all have been quite poorly for 4 days - district nurse comes tomorrow for bloods and back on treadmill on Friday, so basically the chemos had in august and sept have been knocked off.

Not heard from occupational health dept at work, down to SSP next week, just hope can’t fire me.

Tina you aren’t having much luck still, another lump how do you cope?

Rachael can’t believe you are having MRI on a Sunday, thinking of you. It’ really is amazing the difference in onc. And hospitals around the country.

Sadie how’s it going.

Love and hugs to all

Jo

Think I might try and change my sign on name there are so many Jos on here

[system]

hi jo sorry you are being messed about but as long as you get some good results i cant go back to work, have just been given dla really didnt want to but with secondaries have to be realistic. good luck and hugs to you xxx

[sarah68]

Hi all!

Rachel - I’m so sorry you’ve had some progression on the cap. Hope you get the carbo. you wanted before - am I right? Hoping you get it this time and it does some major butt-kicking to the b***ers. I get really annoyed that treatments work so well for some, but not others.

Tina - I’m sorry too you are feeling so anxious. Hopefully a PET can allay your fears, but I know what you mean about it opening up new worries. Hope you enjoy your birthday next week and do something nice. It’s my Mum’s 75th this weekend and my brother and his family are coming to stay from Banbury. Hope we’ll go out for a nice meal now my nephews are past the mad stage!

Glad the 3-weekly chemos are suiting you better, Sadie. I have done both kinds and they are easier, I’d say. Love to your family - they sound lovely.

Sorry Jo (and steve) that you’ve had so much palaver with your Hickman line and having to do all those chemos over again is just sickening. No wonder you are cheesed off!

Your SEs sound awful, Sandra. Hugs to you and Come on Wales for Saturday! (I don’t watch it, mind!)

Jo - 18 taxols is a marathon, isn’t it? . You have so much to cope with. We women are incredibly strong! Hope you get good results and a treatment break.

Thanks to all for your kind thoughts! My chest pain has eased again after 1 1/2 weeks. I’ve had 3 similar attacks in the last 2 months and when they strike I can hardly move! I’m sure it’s rads damage made worse by lymphoedema. The x-ray shadowy bits are consistent with the CT results, so that’s something! I will try not to moan about it on here as most of you have it a lot worse, it’s just that pain really b**gers up your quality-of-life! I’ve also been corresponding with some “40-something” ladies on the bc.org.site and one of them has send an e-mail to Ellen, who does a daily chat-show there about us all, as ideas to feature on the show. So, if she’ll pay for me to fly from Heathrow and other one of the group from New Zealand, we may be on telly!! Can’t see it happening, mind you! I’m pretty shy in person so it would be very scary for me! Also - I’m a stage 4 in the US, apparently - thanks guys! Back to Slimming World for me next week - can’t wait (!)

Hope I remembered everyone on here. Lavender Lass - did you have a good holiday?! Also - sorry, I didn’t read your post properly, Tina, about the new lump. Hope you get that scan asap.

Love to all, Sarah xxx

[Lulu34]

Rachel sorry to hear about the progression hope you can get a chemi that wi Zapp the wee sh* tes!

Tina what a bummer hunny. Just what you need! More worry but I hope you can get a scan soon and that it’s just reactive.

Jo sorry you had a crappy time with your Hickman and that they are now planning to five you even more chemo… You can ask for their evidence about why you need extra and if your not happy you can get a second opinion. Iv never heard if this even when people have had treatment delayed for whatever reason.

Sarah hope things start picking up and keep my fingers crossed that ellen is keen to see you xxx

All the best xxx

[system]

hi ladies
just a quick update- my new onc wants to see me this Tuesday after hearing about the new painful lump in my neck. I am definately going to insist on a pet scan asap so we know exactly what is going on before we delay treatment any further. My neck wasn’t scanned last month but the ct failed to pick up the node at my collarbone so I want a more sensitive scan that will tell us more accurately, where I’m at. Heads up my bum to say the least…
Lulu I saw on another thread that your chemo dates are sorted. Great news- have a lovely weekend with ur friends + enjoy the next few chemo free weeks x
Sarah- good to hear tge pain has settled down 4u. The Ellen show possibility soubds very exciting indeed Do keep us posted x
Rachel- hope ur doing ok + not panicking too much x
hi to everyone else too Just doing some ebaying this house is full of my clothes most of which I can’t wear anymore…
Tina xx

[system]

hi tina glad you got app with your onc,am sure you will get a scan done,thinking of you hugs xxx

[system]

Hi All
Hope everyone is doing ok. I hope Jo your treatment going better - Ive never heard of starting again even if missed some as still in your body ? I had delay due to dental work but did not start again.

I thought Id be pleased to finish 18 taxol but haven’t felt that rush I thought I would have as had hoped I would have break but know in my heart not likely as chest disease progressing on skin and collar bone node. Seems never ending popping up here and there. I see prof on tues so will see what he says.

I have forgotten rachel if you had skin disease as know the capecitabine an option for me but that was before skin disease increasing. I think being tested for the androgen receptor drug too. I also heard of new treatment to pass electrode through skin for skin disease so am going to ask about that too. Will update when i find out as know others have this too. Tina you may like to ask about this ?

I hope next carboplatin easier sadie. IS your hair coming back ? I am desperate for mine as had most of past 16 months without and my 3 year old asking where I lost my eyebrows ? Are they outside ? At least it made me laugh

Lulu - hope chemo okay for you - what will you have ?

I hope you are okay laura and enjoying your time off.

Sorry who I have missed.

Love jo ( hope 15 )

[system]

Hi All -

Sandra - the nose bleeds are HORRID, but a few weeks after the Taxol / Avastin stopped so did the nose bleeds 99% of the time! So, fingers crossed this will happen fopr you too. My feet are still v sore though!!

Joey (Jo and Steve) - Is it that they are not counting the treatmentes you have had at all, or are they delaying your scans till youve had 9 chemos (rather than scanning after 3 months time?) Sorry, im a bit confused (easily done!!)

Hope / Jo - All the luch in the world for Tuesday! My hair is comming back! It was growing a bit on Taxol but v thin - now it is covering my head!!! Still not very respectable though! So - hats for a little while longer. Your 3 yr olds comment made me laugh too!! I will keep an eye out for lost eyebrows. Maybe mine are with yours??

Tina - Good luck to you too for Tuesday!! Im glad he has responded quickly to you wanting to see him and hope you get what you want and need!! Are you still planning a holiday ?Turkey?

LuLu - Hope you are doing OK? You ask about others, but how are yuo doing?

Sarah - Sorry the pain is a pain!! Good luck for Slimming World and the trip - you never know???

Hi FQ - DLA is such a horrid name for it!! But its money in the bank and i am happy to get it!

Hi nd Hugs to everyone else!!

Ive had a nice few days just pottering and catching up with stuff! Wills last week and Tax return this week - I do wish we could bypass some of this!! But no, the Tax man still needs his paperwork!! Done some cool stuff to - mostly with the kids! Taking my son to watch Worcester Rugby tomorrow and my Daughter play netball on Sunday…and then dont want to think about Monday yet!! (Chemo day!!). Just heard that Tomotherapy is not an option for me - but the Marsden are asking for more details from my Onc re Cyberknife! So, still a small hope!!

Hugs and Smiles to all

Sadie Xx Xx

[system]

hi jo, i had skin recurrence while on chemo in march in rash form rads sorted that but have lumps and bumps popping up around mx area and other boob its a nightmare they grow so quick from tiny bumps the xeloda shrunk them all well but sadly not for long for me hugs to you xxx

[system]

Hi girls
just a quickie whilst I have got a signal on my phone (I’m at our caravan)…
I’m feeling really pis**d off coz had a good prod around last night + there are at least 3 lumps in my neck!! All very small + close together but very scary. Hoping I get the pet scan in the next week or so coz I’m naturally fearing the worst. Don’t want any results til after my bday nxt wk tho. Just can’t believe I woke with a nasty pain + boom. Must be my body trying to alert me to the progression
Rachel best of luck with tmoros scan. I’ve got everything crossed 4u xx
jo (hope) you are having such a tough time Have they said what chemo u will try next? Have u had carboplatin before? Big hugs xx
sadie enjoy ur chemo free weekend + hopefully carbo number 2 will be much kinder 2u! Fingers crossed about the cyberknife xx
Jo- maybe they wana start ur chemo a fresh coz it’s a trial? Maybe the long gap would otgerwise invalidate ur results? Good luck xx
Kelly if ur Reading do let us know how u are, I think of u often xx
love to everyone else on here- Sarah, lulu, lwendy, sandra, laura, jo (tara), and anyone I’ve missed xx
love tina xx

[system]

hi tina thanks for your good scan wishes to be honest and not trying to be neg but fear more progression, if i have good feel around i find small lumps all around my mx side and other breast feeling fuller and tender and bumpy it is just crap , i hope you neck lumps maybe glands maybe reacting to a virus or bug !you take care enjoy your weekend, hugs rachel xxx

[system]

Ah good luck Rachel Fingers are well + truly crossed that things are nOt as bad as you fear Do let us know how u get on tmoro xx

[Lavenderlassie]

Hallo all you honeys, what a lot to catch up with, some exciting news and some real disappointments. Mainly pleased that the oncs seeem to be getting their fingers out and giving you the best options available.
Special sympathy to Tina, it is awful to be dealing with the miseries of anxiety attacks on top of everything else. Do you have a cancer support centre that offers relaxation therapies? I didn’t take up the chance early on and had some bad goes of the twitches mainly while waiting for bone scan results.
Sadie, how did the surprise party go?
I had a good holiday, we went to a wedding in Ireland, and met up with old friends some of whom have been through tough times, and in the middle had a day or two just to ourselves which we really enjoyed.
Currently have more enrgy than I have had for 5 years- have lung problems which predated BC and oddly enough the C of FEC has helped them.
Love and encouragement to you all, may all the scans come in better than expected and all ses be less than expected
Lavender
xx