Hi scrapper
u are very welcome but I’m sorry you have had to join us. I also had a skin mets dx within weeks of chemo so can understand what you are going through That was 12months ago but I’m still here so hopefully that will encourage u a little. Radiotherapy is very good with skin mets so hopefully that will get things under control. Have you had a ct scan? I was convinced it had spread but had clear scans for several months. Hopefully your problems are ‘only’ local too. Sounds like your tumour was pretty big! Mine was 39mm + just one affected node but it seems like tnbc doesn’t play by the rules. Pm me any time xx
Thanks so much for replying, Iknow you have so much of on your mind at the moment? Have you contacted anyone yet?
You know I am mostly fine on my own, I just repeat ‘it is what it is’ and I will deal, but as soon as anyone phones I start blubbering hysterically lol!
I see my onc on Wednesday Tina so will know then what happens next. No scans as yet but fear it may also be in my lungs or liver as have developed a cough and really breathless on walking further than a few metres. I find I cannot lie on my side as feel my rib cage is pressing down and restricting my breathing but I hope for the best.
Hi All
Glad you had a great time Tina and hope you get to see another Oncologist sooner ( if mine is away they all cross cover) so you could ring and say how anxious you are ?
I am sorry you have had to join us scrapper but I too also have skin mets which came just weeks after surgery. We are all different in the way this tn behaves but I had no nodes prior to surgery and then did with skin recurrence and organs.
Sorry Laura not more shrinkage but stable is good for us all too - not progression. NOt sure what I’d do as I am hating the taxol se too, had 12 now of 18 weeks worth. It seems these chemos hit hardest first and then slow down. Would your Onc put you on something else instead ?
I am going to take metformin now as studies in states and canada on it.
Hi hope thanks for info I’ve one more to go if they go ahead they sd depends on se this month I’ve a wk delay for hols no mention on changing chemo as was plsed with ct scan and the stable bit they did say I prob wldnt get any more shrinkage but we all hope for that as I had a gd response with the first 2 ESP tn but have to see wat next scan says hope y doing ok
Tina glad u got to see gp hope they get something sorted let us know
welcome home tina, bet you are worn out hope you get some joy with your gp waiting around is so awful they do need to get something moving for you , but i am so glad you had a great family hol xxx
hi scrapper and welcome , i too had skin mets during my first lot of chemo but radiotherapy blasted them but sadly had recurrences spread around rad field in shape of lumps and in other breast so currently on capecitabine,xxx
also hugs to all our lovely ladies love rachel xxx
ps, i too asked for metformin but cant be given but my onc said he will see if any trials are ongoing and will let me know , its all so frustrating !! xxx
Hi everyone, welcome home Tina, hope you managed to strong-arm your GP this afternoon. Sorry for jumping your thread again. Clare, I didn’t realise you had been dx with lung mets, I’m not on the forums as much at the moment and must have missed it. Just wanted to pass my best on to you, and here’s hoping for a fantastic response to the body rattling chemo regime.
Hi girls
just a quick update. Saw gp earlier who was lovely + phoned clatterbridge. Onc phoned me back about 4.30 + we had a chat. He is keen to wait til 24th as originally planned as it’ll be around 3months since last scan + should give a more accurate pic of what’s going on. He was very nice + reassuring, and insisted that if there is bad news on my next scan then this would not have been prevented by a slightly earlier scan. He did say if breathing worsens then I should get in touch straight away but he’s bt expecting anything major based on what I’ve told him. He thinks the feeling of pressure on my windpipe is likely 2b due to the swelling at clavical…
Not sure how I feel- a bit frustrated I guess but relieved that he is not mega concerned. Will see how I feel over the next few days…
Vickie good to hear from you hope you are well + living life to the full x
sadie- hope you’re having a fab time + the chemo s.e’s p*ss off so you can really enjoy your break x
Sarah- how is your arm? Hope it’s a little better. Ru still on cloud 9 after your ned scan?!? Hope so x
claire- great to speak to you earlier. You know I have everything crossed for u matey x
hi to everyone else- linda, laura, Rachel, jo, hope, and anyone else Reading
love to everyone xx
Just a short one - Welcome home Tina and sorry about your worries. It’s a pain to wait till 24th, but the Onc.obviously is not so terribly worried that you need an immediate scan, which is good. Still, the breathing problems must be frightening. We’ll all the thinking about you on the 24th. Love and hugs to Claire - it’s so awful that you are suffering so much with the breathlessness - I hope something can be done soon to relieve it. Love to Sadie - hope you are having a fab hols in France. Glad your scan was stable, Laura - that’s good news. Hi to Jo, Linda, Rachel, and welcome to Scrapper.
I’m Ok now, but have been pretty ill this week and in a lot of pain. Have had a nasty bug with lots of coughing and catarrh lately, but it turned nastier this week with major chest pain when moving my arm or coughing. Dr thinks it’s either muscular pain from coughing or lymphoedema - itis or something being infected in my chest. Obviously hoping it’s not The Dreaded in there somewhere. Dr didn’t think I needed to contact my onc., so trying not to worry. Love to you all. Wish I could make things better…I think of you all a lot . Love and strong wishes, Sarah xxx
PS Tina - enjoy your Wedding Anniversary on Sunday!
Hi everyone - new and old
It has been some time since I posted and not up to date with everything/everyone as there are too many to read.
Tina - I have the same problem with swelling in neck, collarbone and pain in chest. I have so many lymph nodes swollen in the neck that when I lift my arms up I feel like I am being strangled. Certain movements make me cough, I wake up in the morning with a very husky voice and sleeping on one side hurts.
I recently went on a super holiday to Italy and France - got to do it as running out of time!!! so planning my next holiday(s) - skiing, red sea, the Nile then America.
The European tour took its toll - became ill and white cell count very low when I got back and that was with a weeks delay. But back on Capecitabine.
Can’t remember if I mentioned it before, but went to Royal Marsden for a second opinion. When you are told you only have two years left, told chemo not working after that and also that it had gone to my bowel - worries you a little. then on my next visit they realised they made a mistake with the bowel!!! But, any how, marsden said my onc had and has done everything they would have done regarding diagnosis and chemo. So left reassured. Still on Capecitabine, had scan today but I know things are growing.
I can’t believe the stories I hear about other hospitals - some ladies are treated appaulingly. I say, make a fuss, demand to be seen and get things done - follow your instincts. I have a scan after every three cycles.
I have been told not to have radiotherapy and chemo at the same time so not sure what they are going to do with my neck - I am looking very strange as my neck is getting bigger and bigger - one positive is I dont have any wrinkles now as they skin is so stretched.
I am amazed at how some ladies cope with their symptoms and remain positive - credit to you. I have to work really hard on not thinking bad things but find it hard to enjoy life with this great big black cloud over your head.
Anyway too much whineing - I will go onto the internet now and research the red sea, cuddle my two dogs, keep telling my 14 year old son to go to sleep as it is late and maybe I will cuddle up to my other half who is lying next to me in bed reading his flight navigation book (exciting!!!).
Love to you all.
Love
Kelly
Hi ladies
Sarah- really sorry to hear you have been unwell. hope ur feeling lots better now? I’m sure it’s not bc related given yr clear scan very recently. I undestand ur concerns tho- I think we forget we can have unrelated symptoms/ conditions. How is ur lymphodema? Big hugs 2u xx
Kelly- so good to hear from u! Sorry ur having tough time but u sound in pretty high spirits which is good Brill news that u managed to get away to Europe. When do u get ur scan results? Fingers are crossed 4u. Is this ur 1st scan on capcetabine? How are u finding it? That’s pencilled in as my next chemo. Keep in touch xx
how’s everyone else? Hope sadie is havin a ball on holiday! Laura + Rachel hope u are both ok? Claire hoping tge breathlessness eases 4u + keepin everythin crossed the xeloda is working. Scrapper how are u feeling? Hello to anyone else readin too. x
well it’s less than a week til I see my onc. This scan can’t come soon enough. Feels like tge best part if my left side of my torso is affected collarbone still swollen + definately a chunky node in chest also. Suspicious areas in other breast, and breathing still slightly laboured. Think I will need Valium to get me through the wait 4 results. I have also been feeling pretty unwell since yesterday, felt suddenly very weak + exhausted + have been in bed sleeping for the last 18hrs. We have tickets for vfestival this wkend so I’m hoping it’s a viral thing rather than being anything serious or bc related. I’ve had a very painful, swollen foot + was worried it was a node or blood clot but seems a bit better tday. I’m going to get up + see how I am.
Thinking of you all lots of love
tina xx
Hi Tina day 9 after chemo for me still feeling v tired achy this last one took it out of me norm takes 14 days to recover I’m unsure if I’m going for last chemo as onc don’t think I will get a lot of benefit from it so why put myself through se sorry y not to gd hope u pick up scans are scary hope it’s not as bad as u fear my mx seems v tight and uncomfy today unsure if chemo related I bet sadie having a ball hi to everyone else big hug xx
hello all, hi tina sorry youve been in bed poorly does sound viral, i am going for scan on 2 sept just 10 weeks after last one and i too will be in a state!!going for round 3 of xeloda tomorrow have not been too bad but get so tired,exterior lumps have really shrunk but dont know whats going on inside, my grandchild (1st one ) due in two weeks so been helping my daughter and her hubby to get the house sorted (they moved in there in may)papered a bedroom wall yesterday but am knackered does anyone else ache especially in back when overdone things? but as i say am dreading scans but we all do !! hope you enjoy festival tina and feel better too , love and hugs to everyone xxx
Hi All especially to those I have not cyber met before.
Laura - hope you feel better soon after chemo
Tina - wishing you hugs to get through to scan as know so anxious.
I am off on holiday for week to dorset but worn out from packing. I hope sun shines for us as all 4 kids very excited. Even juicer coming on its first holiday !
We had my sons 3rd birthday last weekend which was lovely - just pray I see a lot more of them as we all do
Missed last taxol of fourth cycle as had to have dental work done and counts a bit low. Chemo has caused exposed nerve roots. I see Oncologist after hol talking of capecitabine straight after the 6 months weekly paclitaxol as grew so quick after came off last chemo. Hard to know whether to wait and see or just carry on chemo but will wait til finish this lot in Oct. I am putting a cream on local occurence area hoping will sort out a bit - was recommended by a prof i saw usually used in basal cell carcinoma.
Hi jo not to bad thanks my feet are really red and sore unsure wat to do with them really onc don’t say a lot I’m off to Cornwall after bh for few days nice to be with son yes don’t we all wish we can do loads more of these hope Tina is feeling better and managed to go to the v festival hi to everyone else
Tina I hope you make V Festival, I’m still exhausted and have been sleeping a lot too, I reckon if this is what our bodies are telling us to rest we should listen.
Hi to all, away for a week and so much to catch up with on here. I missed you!! We are all going through so many ups and downs Im glad we have got each other!! Hugs nd smiles to all. I will try individual replies soon.
France was wonderful. Spent the holiday on a boat on the canals and lakes. Loved the feeling of the four of us on a boat, no one or no thing could get at us!! All safe. All together and C***** a million miles away.
Managed to fall over on tuesday so trip to a nd e today to check wrist nd ankle but no fractures. Neuropathy in feet now quite bad, hence the fall (not wine related, I promise!!). Back to chemo tomorrow!! Wonderful stuff but wish there was an alternative!!
My Mum is taking me nd kids to devon on friday for another holiday!!! Wowowow!! Another week off chemo. Onc said would be ok!! Quality time etc etc.
Love to all, esp worried ones. Massive hugs to tina!
Sadie glad u had gd time sorry to hear u had fall glad all ok though my feet and hands are also bad feet are also swelling up going have to hire some wheels as can’t walk far hope tomorrow chemo ok hugs Laura
Tina hope y ok and went to festival hugs Laura x
That was 12months ago but I’m still here so hopefully that will encourage u a little. Radiotherapy is very good with skin mets so hopefully that will get things under control. Have you had a ct scan? I was convinced it had spread but had clear scans for several months. Hopefully your problems are ‘only’ local too. Sounds like your tumour was pretty big! Mine was 39mm + just one affected node but it seems like tnbc doesn’t play by the rules. Pm me any time xx
