Hello Everyone
Just a quick note to say I’m still resting up after my short all inclusive break courtesy of the local PCT-LOL!!
Still coming to terms with the news of my lung secondaries and really frustrated with the breathlessness but I’m coping, nervous about Onc meet on Wed but want to crack on with whatever they throw at me next. Made the mistake of asking about life expectancy stats and WON’T be asking again, I’m a person not a number and don’t intend of going anywhere any time soon.
Tina I’ll catch up with you when I know more and perhaps we can get together when you get back from your Saudi adventure!
Health & Happiness to all
XX
Hi all on here!
Just wanted to say Hugs to Claire for Weds.
Have a lovely Dubai trip, Tina - livin’ the High Life eh?! Glad you enjoyed Ibiza. Have you thought maybe the collarbone thing could just be a bit of fluid swelling, if it comes and goes?
Linda - good luck with rads to clobber those BU**ers into oblivion.
Love too to Rachel, Sadie,Laura - hope the kitten is OK? Also, Bestfriend and MrsG. I am thinking of you all.
Love, Sarah x (aka Night Owl - 1am…time for supper in my house!)
Hi all just wanted to pop on say hi just getting over chemo so be on when up to it glad everyone doing ok Tina u enjoy that holiday my son broke up tues so not much I can do with him he always seems to miss out on sch hols cause my chemo next scan 4 th aug see how it working tc all be back sn hugs to everyone gd luck Laura x
Hi All
I am so excited to read of Tinas adventures and has spurred me to be a bit more adventurous than a week in Dorset. Am going to see where we can all go for some fun but is so exhausting with 4 kids and youngest 3 and 1. I think I will search good deals on internet! Dorset still good though in August for beach.
Have felt rough last week so sorry no posting. Bad neuropathy on the paclitaxol and toes and fingers numb. Am so tired and nanny left so just finding holidays exhausting and only on day 2!! We have another help but is so hard to even do the rest. I had scan 8 days ago but dont know results til end of week. Am very anxious as wants to see me and so has worried me.
Hope the sun comes out and you can all enjoy sun
Sadie - you are doing so well on this as only on number 10 and exhausted.
Love jo ( hope)
Hi All!
Jo / Hope - Neuropathy is no fun at all. My fingers and toes and tongue (!!) are suffering. Also, my finger nails are lifting! So it is starting to limit things I do! If im honest, number 11 and 12 were the worst so far. I was dreading number 13 - but it was a bit better and now im on 15! So, maybe things will pick up for you soon too. The holidays are wonderful to spend time with the kids. Im glad you have help on the way… Look after yourself. Waiting for results is horrid! Fingers very crossed for you.
Claire / Poppet - Thinking of you lots today. I hope the plan sounds positive.
Tina - Have a fab trip. You certainly are going for it!! Good for you. Enjoy and tuck the worries away for as much as you can.
Sarah - Gosh, tea at 1am. That is a midnight feast!
Laura - Hi! Not sure how old your son is - but mine is happy watching films together. Sometimes little things you do together are OK! We had a laugh hanging the washing up together earlier!
Linda - Radiotherapy blasting nasty cells sounds good to me. I do hope it starts soon and goes well. Do you have far to travel? I do hope I will get a break. More scans in Sept and then a planning meeting to discuss. I just think I will need a break. 18 by then and it is hard! I have a few exra weeks off in Aug for a couple of holidays that im really looking forward to! That will help.
Fairyqueen (love the name) - wonderful news! What a wonderful event - becoming a Grandmother! 5 1/2 weeks now??
Hi - to anyone else ive missed. Sorry!!
Im OK. SE just about hitting so my spellyingg is probbablie alll overr the playce! I will tuck in for a few days and hope im up to meeting my daughter off the bus on Firday morning (been in south africa for 3 weeks - shes ready to come home now!). Hugs and smiles to all and sharing an experiences gives us strength (well - it does me anyway, so hope you all too)
Sadie Xx Xx
Hi Sadie!
Your comment made me laugh - for me “supper” is the snack before bed! Mind you, eating at 1am is a bit mad! A welcome home to your daughter and best wishes to her lovely mum. Love to all on here,
Sarah x
Hi ladies
Just a quick post to ask you all for a bit of advice…
As you know we are booked to go to dubai on monday for 10days. My next onc appt has been put back to 24th aug due to the hol and the fact she is on leave mid august. Since I booked the holiday a fortnight ago, my chest wall has become increasingly sore. IM not talking about a small area here- the affected area and scarline is really large. Probably the size of an a4 piece of paper from armpit to waist, round my left side and back 
There are defo more lumps and bumps around scarline and its tight and sore. The swelling at my collarbone is also back and Ive a apain in my other armpit (I had an enlarged node there too pre chemo). Anyways, aside for these symptoms (!), I feel well in myself. IM just worried about not doing anything for another few weeks. I obviously dont want to cancel my holiday as we are all looking forward to it so much, and the excess on our insurance policy is over £1100!! I know I’ll be back on chemo once Im scanned- I can only hope the prob is still ‘only’ local. I feel well enough to go away and im not worried that I will take ill or anything, Im just worried about ignoring this local progression. What do you guys think???
Any advice or thoughts would be great. A bit of me thinks what is the point of going to see my onc now and cancelling my holiday etc, as they never rush anything anyway. Id have to wait for an appt then a scan then results etc…
Thanks in advance and sorry for the me-post
Tina xxx
Hi Tina sorry you have more worries I know what u mean about onc they never rush why don’t you have a word with bcn see if you can see if she can have a look at least it’s another opion and maybe might settle your nerves sorry not much help just very hard to know what to do for best pls kp in touch hugs Laura x
hi Tina
Please never apologise for a me post as we all need to support each other and you are brilliant at doing that. I dont know what I would do as I have local skin dis too. I was told they are not really worried by local disease only systemic disease. I was also told as systemic does not necessarily mean will spread as i originally never had any nodes yet had spread.
I would let BCN see if you can before you go. They will probably want to scan node but maybe could do before you go and then come back and if you needed to start treatment you could. Depends how much it would worry you whilst away or if you could forget it whilst away and enjoy yourself. Id be tempted to call the BCN for advice.
try not to let it spoil what promises to be a fantastic holiday
jo x
Dear all
I had scan results after anxious 10 days. Mixed feelings as responding in liver and lung disease but local scar and armpit node not responding really. Not sure why one is and one isnt. So am to stay on taxol for another 9 treatments ( had 9)then maintenance chemo such as capecitabine. My onc has someone on it 18 months now and tolerating well. I said will all tumour go and was told will never go but may appear gone on scan. sometimes reality hard to swallow as so want to think it can all go and stay gone as we all do.
Feel bit better today. Saw a prof who looks at treatment from different perspective and had some ideas mainly around anti inflammatories, D3 and a local cream to maybe try for skin recurrence.
Have picked up again and decided can only physically cope with half a day of kids 1,3,11,14 so going to spend half a day and have help for half the day so I can rest as just too much some days.
Thanks for advice on the taxol - am hoping the neuropathy eases as is hard to feel things. I was told if does not go in between treatments than cannot continue - is that what you were both told on taxol ?
I was trying to get metformin prescribed but not able to as trial not published yet.
Best wishes to all and hope you all get to enjoy some holiday time
love jo x
Hi jo was just wondering how bad y fingers were my onc told me can give me some tabs for it mine don’t seem to go away just settles a bit in wk3 I can’t hold a pen properly but can do sum bits tc Laura
hi all ,
hi JO, am sorry you have mixed feelings on scan but its good that you liver and lungs have responded maybe your local will eventually, i dont understand why this can happen you would just presume it would react in all areas not sure if i am being scanned every 2 months now awaiting to find out but even if my local lumps stay shrunk am still going to worry about inside, we cant win can we, we just want to hear ned at least once. you take care and i hope you see more improvement , i too have left info with my onc about metformin but fear my answer will be same as yours xx
hi TINA,am so sorry to hear you have these worries so soon after chemo and a good scan so bloody unfair but if i was you i would go on hols because dont think anything constructive will be put in place as you say it takes time to get apps sorted etc, but as suggested maybe pop and see bcn for chat,hope you get some clarity on what to do soon xx
also hi to other tn ladies hugs rachel xx
Hi Tina - oh pants!! What a dilema. I think only you can decide what to do!! However, how about following it up urgently with your team but make it clear you are not changing your holiday plans!! But then, thinking about it, Im not sure how that would work with your insurance company? You would have to notify them. Oh goodness! I just think, if you are feeling well, the boost a holiday will give you mentally and physically is worth a delay in treatment. They delay things for a Bank Holiday, so it never seems a big deal. If you have had a break, you will be more prepared nd more able to cope with whatever is next. And, quality time is so precious, may be worth delaying things. But, Im not you! You have the weekend to think about it, but maybe not too much! What’s your gut feeling?
I’m going to post this first nd then reply to Jo. Don’t want to loose it!!
Sadie Xx Xx
Hi Jo. It IS good news about lungs nd liver mets. I am pleased for you. They are really important!! It’s so odd that other news is not so positive! Keep going with the Taxol!! Not fun, I know, but it is blasting!! My neuropathy got worse for a while but has now plateaued. I asked for medication to help, but they said there was nothing. It just gets worse day 2 then a bit better, then stays the same! Homeopathy helps. I don’t know how you’ve been coping with four children nd two of them very young! I’m glad you’ve got help. Must look after yourself for their sake!!
Take care,
Sadie Xx Xx
Hello lovely ladies 
Hope you are all doing as well as can be this weekend. Thanks for your words of advice regarding my hols. Ive been feeling pretty stressed but have decided to go ahead with our trip and deal with the nasties when I get home…
I briefly saw my bcn on friday as i called into the breast clinic to pick up a prosthesis for the pool. I showed her the swelling at my collarbone and told her about my chest wall. I told her ‘off the record’ and told her my dilemma. She agreed that I should go away providing I ‘feel as well as I look’. She said there would be inevitable delays with scans, my oncs annual leave etc and said if it was a false alarm we would be gutted that the holiday opportunity would be wasted. I do feel well in myself and the swelling has actually gone down quite a bit over the last few days. My side is still sore and very hard + tight. I really think the ba*tard cancer will soon break through the skin down my side, and with rads not an option, Im worried
My bcn told me to text her from hols and she could start ball rolling re scans etc, speak to oncs etc if Im still concerned before my return. Im also very close to the clinical nurse specialist who is topdog in my clinic so I know I can contact her anytime and she will fight my corner and push for appts and results etc.
So this time tomorrow, we will be getting ready to board. Hoping dan is ok as its a longer flight- over 7hrs but we will take lots of dvds for him to watch and keep him entertained Only started packing last night and have tons to do today. I hate holiday ironing!!
We went to a wedding in crewe hall on friday night and stayed over. It was a lovely do and the veue was really nice. I drank far too much, mixing drinks, drinking shots etc etc. Oh well if Im gona make the most of whatever time I have left and I’ll be going down kicking and screaming when the time comes. Im determined to live life to the full in the meantime. After dubai we have Vfestival to look forwards to- hoping Im well enough to attend if Im back on treatment, then we can always sell our tickets. We are going to take dan to euro disney for a few days in september, god willing too. Was gona go for his birthday in may but decided he was a bit young and went to peppa pig world instead. He will obviously be a little older in sept and I so want to be there on his 1st trip to disney so Im keeping everything crossed for that.
Was so very sorry to read about the rapid decline and passing of mrsg who only posted on here for advice a week or two ago. I was truly shocked and it terrified me if Im honest. Naturally, I do hope that when the end comes, it is quick for my own sake and my family’s, but you dont expect someone to be up and about, posting on forums one minute, and gone the next…
Jo thanks for your support and advice. Sorry you werent fully reassured by your scan results. FAB news about the response in your organs- that is such a relief. But its pants that locally, things arent respo9nding so well. I am in a very similar situation. Carbo blitzed my lymph mets but there was no imrpvement in the local area. My onc even thought the lumps on my scarline maybe scar tissue and they hadnt responded to chemo and they werent showing up on the ct scan. I know in my heart of hearts that it is cancer and Im sure that a really large area is affected. Bizarre how local disease can be so resistant to treatment- surely you would expect a similar response all round? Hope you have lots of support with the kids. Im struggle some days and I just have one toddler! Big (((Hugs))) xx
Sadie, hope your lovely daughter is home safely now and you had a nice reunion Bet she had an amazing time. Thanks for the advice too- I decided not to do anything official on friday coz like you said, i would have had to notify the insurers and they may have withdrawn cover etc.I can only hope and pray that the progression is minor and localised. 10 days wont make a difference im sure, so I’ll deal with it on my return. xx
Rachel and laura- thanks also for your posts Hope you are feeling ok and the chemo is having a good response xx
Hi to everyone else, sarah, claire, and anyone else reading xx
Will be going online at some point on my hols so will pop on to catch up with news and see how everyone is doing.
Take care all
Love TIna xxx
hi tina , just a quickie to say have a great hol you let your hair down girl and enjoy, none of us know what lies ahead so dont stress(says she who stresses lol) and have fab time hugs rachelxxx
Tina have fab holiday try not worry we will look forward to all your news on return and mind that sun xx
Hi Tina - you wonderful woman!!!
I think you are doing the right thing re:going on hols and saying to hell with it for a week or so! Hope you have a great time and have a drink (or 10!) for me. Cuddles to your little Dan - my Dan has size 9 feet now and a baby moustache - and he’s gorgeous too! Love to all on here,
Sarah x
Hi Tina - Delighted you are going for it!! Enjoy your holiday!!
Disney Land - I took my kids to DisneyLand, Paris following my Primary BC nd before treatment (came back to a flooded house and had to move into temp accomodation for 6 months - but that is another story!!). I got a letter from my team saying I had BC. I took this to the Office just inside the main gates and they gave me a special slip that lets you to the front of all the ques!! Fantastic!! I felt a bit odd at first, but then thought I would swap places with anyone in the que!!! Anyway, thought it is worth you knowing Tina if you are going with Dan. It saves HOURS and makes it such a differnet experience.
Hugs to all,
Sadie Xx Xx
hi all
im new to this site. im 31 yrs with tnbc and diagnosed with skin and bone mets in april. also just discovered new primary in other breast. have had 3 x ec this time round. i was due 4th on mon but as red bloods dropped again for third time and i personally thought lump was getting bigger ive been told chemo must stop and be changed to capecitibine. has anyone else had their regime changed without scans or even anyone looking at their breast? just feel that its all on my word that lumps getting bigger (coz i have been known to be paranoid!)they were willing to go ahead with very low red bloods until i mentioned breast lump. im gutted as ive already tried tax and cyclophospamide last time so this will be fourth chemo used.
sara x