Hi Sadie - good to hear you are off to Paris - I hope you have a fantastic time - will certainly follow your advice regarding planning good things every day (big or small) - today was a big fat cream cake!
Jo - hope you are feeling a little better - I have nothing but admiration for all you girls with young families (hope that doesn’t sound patronising) but I only have to sort myself, OH and cat out as kids are all grown up and away from home, all the very best for Thursday - I will let you know how tomorrow goes for me.
Seem to have taken temporary residence at hospital this week - bone scan yesterday and bloods, chemo tomorrow and CAT scan Saturday - not the best of weeks.
Am off for my second treat of the day for an evening meal out before chemo tomorrow robs me of sense of taste, appetite or who knows what!
Hi to Sookie! Sorry you are so down, Jo. I would feel the same way. Hope your SEs on the new chemo. are few and you start to feel brighter soon. Really pleased you’ve got the OK for Paris, Sadie. I was there for a year as a student - good memories! Haven’t been to Disney there, though. May make it sometime, money allowing! Good luck to Tina and Rhian for your scans on Thursday.
Hey ladies
Hope things are well as can be with you all? Been trying to catch up with everyones news there are so many of us now!!
Sookie- a very belated but warm welcome to you. Sorry you have had to join us but we will support you through your treatments and offer a listening ear whenever you need one. Best of luck with the chemo and the scans. When do you get results? x
Sadie- so glad you are feeling a bit better after chemo #2 and a big YIPPEE that you can go to france. Have a fantastic time you really deserve it x
Rachel- thinking of you and hoping the christie suggest an effective treatment regime for you. Lots of love x
Sarah- hows your arm? The pain any easier? Hope so. Thanks for your continued support you really are lovely x
Rhian hope you are coping ok with the shock of your new dx and best of luck with the ct scan on thursday. Hope they dont make you wait too long for results x
Jo (Hope)- things are tough Im not surprised you are low and shatered. 4 kids are hard work at the best of times I really dont know how you do it. Got everything crossed for the gem-carbo. Im sure you will find it easier than the last weekly regime. I hope so anyway. Big (((hugs))) x
Lulu- so pleased you had a great trip. Sounds brilliant! Good luck for your 1st chemo this week hun x
Joey- hope you are bearing up ok and the se’s arent too bad on the weekly chemo x
Wendy hope the effects of the chemo are still bearable and its having maximum results! Have you got a progress scan coming up? x
Sandra- how are things with you? Hope you are ok x
Hello to everyone else too- Laura, Jo (Tara- how are you doing btw?), and anyone Ive missed xx
Cant believe Im back to scan stress on thursday. As Ive changed oncs and hospitals, I wont be able to chase results in the usual way because all my bcn ‘allies’ work in another hospital! But my new onc said results should be back next week. This wheeze on my chest is my biggest concern, not to mention the numerous nodes that seem to appear from nowhere! This is such a ightmare that sometimes, I can hardly believe its actually happening to me. Im sure you ladies feel the same. Its just so unfair isn’t it…
Hi Ladies
Hope your all doing ok today
Rhian and Sookie. Welcome to our page, sorry you have to join us, good luck with your scans, results and treatment.
Tina. Belated happy birthday, hope you had a great weekend. Good luck on thurs with scan.
Sadie. Enjoy Paris, have a Fab time with your family, pace yourself on the Disneyland rides!!
Jo hope. Chemo is so tough, n you’ve had so much ova the months, hope you can have some help with your 4 children over half term. Xx
Hi to Sarah, Laura,Joey,Wendy,Lulu,Rachel hope your all doing ‘ok’,
Hi to everyone else I’ve forgotten to
I’ve got app tomorrow with onc, she’s checking my fingers/nails - think may need another week of antibiotics, before I can have chemo on Thursday. She did say 2weeks ago, that she may stop paxitaxol, and just have avastin! So will let you know , have had 12/18 of paxi.
Hugs to you all
Sandra xx
Have had first Gem/Carb today, managed to arrive at the hospital literally all shook up as managed to fall flat on my backside on wet leaves on the way -should be a good bruise there tomorrow.
Jo - my Chemo over in a relatively short time today - about half hour for each infusion - chemo nurse warned that gemcitabine can really make your arm ache when it is being given - but luckily I was ok. I didn’t realise that the regime means that next week I will only get the gemcitabane part of the regime.
Gingerbud - thanks for the welcome - I see my surgeon on Friday 4th Nov. so hope results from scans are available then.
I certainly can’t believe that this is all happening - but feel I am just on automatic going from one hospital dept/appt to another at the moment.
Well probably a late night ahead because of the steroids buzzing, but wish all of you a good night.
Sadie im really pleased your getting to go to paris i hope you all have a wonderful time.
Sookie hope your bum is better after your fall and that the SEs arent too awful for you… i have my first chemo at 9am in the morning… started the St-Eroids today and along with my insomnia and overthinking everything i think i prob wont get much sleep tominght but off to bed now to see if i can get a wee snoozette.
Sandra how did you get on with your onc today? did you get more ABs? and is she stopping your taxol?
Tina hope your scan goes well tomorrow you much love and that your not kept waiting toooooo long for your results… it must be such a worrying time when you can feel lumps popping up right in front of you… but your in the best hands hunny… sending you much love xxx
Rhian what else are they planning for you hunny? let me know how your doing… dont like to post too much on FB.
Thanks for the good luck wishes- I’m wheezing away as I type so my nerves are shot
good luck rhian for tday with the ct x
lulu hope u got some sleep + ur chemo goes well tday x
I had a bit of a trauma yesterday- took mums cat to the vets with her + he scratched my hand on my ‘bad’ side. Called my gp + he’s put me on anti b’s just in case. On a positive note, our private health insurance have offered me a £3k payout for the carboplatin I had on the nhs earlier this year. Were pushing for further payouts on the fec-tax and rads course too. I’ve no critical illness/ life insurance so this is cash is very welcomeThanks to linda again for makingme aware these claims were possible. Hope u are ok linda- haven’t seen u post for a little while… X
love to everyone on here xx
Hi - A quick shout out for Tina - hope the scan was OK and your arm does not get infected. Hope they do not keep you waiting too long and the results are GOOD!! You deserve this!!
Lulu - hope chemo today was OK nd you got some sleeeeeeeeep last night! Hugs.
Oh Sookie - SPLAT!! What a shame. Glad chemo was quick - sounds like they need to teach Worcester a thing or two - I just have Carbo and ZA nd took 6 hrs last time!!
Sandra - Did you get the chemo or are nails still bad? How do you feel about stopping the paxi? Hugs
Sarah - Paris as a student - sounds very grand!!
Ive just had a lovely day out at the Safari Park with my son - laughs and giggles and lots of holding hands - he is 12 and so this is really not cool!! But when you are very scared (him , not me!!!)with bats flying round you it is OK to hold your Mummys hand still! Loved it!! It is what life is all about!
Hi to everyone else and esp hugs to all those with scanxiety!!
Hi All
Just a short note, for a update.
Went to see onc on weds, she thinks I will prob have 6 nails falling off, no ABs this week
Seeing as I only finished last course last Friday, been soaking fingers in warm salted water, advised to try tea tree oil too.
Didn’t want me to continue with taxol, but I said I would like to try maybe reduced amount for maybe 2/3 more sessions. Although if my nails are worse by next tues, I’ve got to let them know, and canc taxol.
I have been back to hospital today for avastin only. So may have avastin only every 2 wks.
Another lady from my chemo unit,has been having the same as me and she too has been suffering from hand and foot nail infections too. And she’s just on avastin now too.
Luv n hugs to you all
Sandra xx
Only 2 hours sleep last night but was fine. Plenty time to catch up on sleep the next few weeks. Chemo we well was in unit for over 7 hours. Had bit of a debate about my rubbish veins and they said the would try but to get the specialist nurse to come and review me and thinks veins look too crap for picc but should be ok with a Hickman and being referred to discuss this soon.
I took a reaction to tax and had to be stopped when. Was having hallucinations about falling glitter and got very hot and dizzy and very sleepy with beetroot face almost matched my chemoshoes lol. Had to have infusions of piriton and corticosteroids and then tax was restarted slowly and was fine although cheeks still pretty red. Carbo didn’t seem to cause any problems though just very tired now so vegging out in my jimjams and my minging DG on the sofa.
Hi all
Thanks to you all for support. Climbing out of down week or two slowly but having MRI of back tomorrow as in pain. Only had CT 2 weeks ago but don’t go down as low. I pray is nothing as meant to be in centre parks mon. Today not got liver pain again so assume another bleed which I get from time to time and v
Sinful so back on high dose painkillers. Not ideal prep for holiday but hoping calmed down by mon.
Sounds as if you are on same regime sookie to me as I had first one today. Gemcarb was 30 mins and carboplatin an hour. Had trouble cannulating for an hour but got there. Actual treatment easier than taxol as I used to react badly to piriton but will see how I feel in next few days. I am having 21 day cycle too but missing 2 one as Onc wants me to go away.
I am fortunate at our hospital when. Read about Worcester and the time you both have to wait.
Chemo nurse told me carbon/gem 21 day cycle easier than taxol so hope so !
Have you read of electrochemotherapy ESP good for local recurrent disease Tina and any others who have. I get in a muddle who has. I do and a dr told me an article in mail on Tuesday that royal free doing where under GA they insert electrodes then chemo and is very effective.
I know what you mean, Sadie, about the hand holding and 12 year old boys! Mine does it very occasionally now, but mostly pushes me away! He did give me a lovely hug in M&S yesterday, though. It really wasn’t grand being a student in Paris! I was staying at a Uni. just outside the city which charged rent of only £50 a month and had 1 set of electric rings,of which often only 1 worked, for 25 people! I sound like the 4 Yorkshiremen from Monty Python, now! Glad you had a lovely time with your son. You are a real tonic on this site.
Pleased for you, Tina, with your payout! Good wishes for scan results. Love to everyone else - sorry about your liver pain, Jo. The electrochemo. you mentioned sounds very promising - thanks for mentioning that. So sorry about your chemo. probs - Lulu and Sandra.
Thanks for asking after me, Tina. My arm/chest are finally better.
Evening all
Jo/hope15 - yes it sounds like we are having same treatment - my veins went into hiding too - so I sat with my hand in a bowl of warm water to tease them out which did the trick in a few mins. My next visit to my second home is Sat for my cat scan.
Lulu - Your reaction sounds pretty scary - hope you are ok - tax is evil stuff in my book!
Gingerbud - cats are such ungrateful creatures at times aren’t they? you try to help them and that’s how you get repaid - I have known it take 3 of us to hold our cat down at the vets - hope you are ok.
I have private health care but they would only cover my chemo if it was administered at home (which I didn’t want) so I went back into the NHS for chemo. I am now wondering if I too could claim any thing back, I will have to investigate.
Sadie - how do they manage to take soooo long with your chemo?
Glad you had a good day at safari park - I’ve had some good times there in the past.
Hi all
I have private ins too sookie and could have chemo where I wanted - buoa. Only took out 3 months b4. Is a blessing with speed from sounds of sadie and jos experience but think NHS treatment as good and was an NHS manager.
MRI today confirmed pain from new spine lesions yet on ct looked stable. Couldnt have radiotherapy as had gem/carbo yday and Onc said radiotherapy would affect bone marrow and gem carb already affects counts.
Now have liver pain so hoping chemo gets to work as want to enjoy centre parcs nextweek.
Hope Paris is great sadie.
Jo x
hello all just a quick update from me …went to the christie today they were lovely saw lady doctor who has offered me a trial of paclitaxel/avastin/metmab or gem/carb think am going for trial as that will keep gem/carb in reserve…so am in care of christie for now which is weekly trips its about 1 hr 40 mins to get to but am just pleased they can offer things without funding issue, they will give me a ct too and it looks very lkely i have cancer in other breast i thought it was ibc cos it has got lots bigger but they said its not unusual with tnbc to metasize to other breast… so thats it for now at least i have a plan inplace and backup of gem carb…love to you all rachel xxx
Hi Rachel
Glad you have a plan in place now, it’s a relief isn’t it, when you know which path your going down next, and yr backup of gem carb.
I’ve been on taxi/avastin for last 12 wks, good luck to you, hope SE 's arn’t too bad for you.
Hugs
Sandra xx
glad you had a positive appointment rachel but sorry to hear you hve more spread to the other side xx
jo sorry to hear you have progression in your spine… hopefully chemo kicks it into touch soon xx
sookie im feeling lots better today… i dont really remember too much about yesterday as was pretty spaced out… not looking forward to giving myself my g-csf injection in an hours time… yikes
Hello ladies
I’m a little confused as I posted on here a few days ago but there is no sign of my post?? Its been very quiet on here, I hope all my TN buddies are ok?
Rachel- I know we’ve chatted on another thread but so glad you are feeling more positive about your treatment now Any news on the mri results? When is your 1st chemo then? Good luck x
Lulu- how are you feeling after your first swamping last week? Hope the se’s are mild and you are doing ok x
Sarah- so glad your arm is finally lots better. Hope you are well x
Sadie- Hope you are having a ball in france with the family. Me and hubby plan to go back to eurodisney in december all being well. Think Dan will love the xmas festivities and it’ll make it well worth another visit x
Jo- Sorry to hear there has been some progression but Ive got everything crossed that the gem-carbo will kick in quickly, relieving your horrid symptoms and you are able to get to centreparcs and have a wonderful time x
Sandra- How are you feeling? Hope your nails are ok and you have been able to continue with chemo x
Rhian- how are you feeling? Any news on scan results? Ive got to wait until 11th Nov! Good luck x
Joey- hows the treatment going? Good I hope x
Wendy, havent seen you post for a while. Hope things are going well x
Sookie- I would defo look into your private health to see if they will pay out for your chemo. Any news on scan results? Good luck x
Hi to everyone else reading including Linda, Laura, Kelly, Jo (Tara) and everyone Ive missed too x
Nothin much to report here, awaiting scan results when onc back off leave next week. Pretty worried due to increased pain and swelling in chest wall, muliple new nodes in neck around clavical, and no sign of this wheeziness buggering off either. Feel like Im being left to fend for myself to be honest- havent had any treatment since MAY!! I feel very lucky to have had this break so we could have a more normal life, holidays etc but there comes a point when you want to be proactive and fight against this obvious progression! Another lovely friend of mine from my clinic passed away last week. She was the first patient I spoke to after my dx and she has had a terrible time, getting secondaries quickly despite having a small, node neg hormone positive cancer. Seems there are no rules with bc- its just the luck of the draw…
Lets get this thread active I think we all benefit from the support
Love to you all xxx
hi to everyone sorry my posts are few and quite short but having to use left hand as right one still painful,am always thinking of all of you and love the support on here, hi tina i too am bit wheezy but they did ask at the christie if i had the pleural effusion drained but i havent but i am back there friday as they want a ct done and they have me in for another bone scan monday and heart scan they are very thorough if they get results from laST Bone scan they will be happy with that but they are getting everything moving and want to get started so am feeling good that they are on the ball,i do feel this disease is galloping just feel different so i pray i am wrong,as i say i send love to you all and my best wishes hugs rachel xxxalso can i add tina i am so sorry to hear you have lost another friend there are certainly no rules in this bc life hugs xxx
I’ve been reading, although not posting as things are moving along just as usual. My symptoms still seem to be better than they were, though hard to say if they are still improving or just staying the same. I really don’t want to get my hopes up I suppose, just waiting for the scan results to find out.
I’ve got a scan booked in for the 18th or 19th of November so will find out soon afterwards what is going on, I hate that week of waiting - don’t we all!
I was due to have another treatment tomorrow but I’ve got a nasty cold that’s gone to my chest. I feel okay in myself, no temperatures or anything, but my Onc wants me to have a week of antibiotics to be on the safe side. I’m sort of relieved to be honest. The side effects aren’t too bad really, but I’m just so tired all of the time. I’m sure it’s a combination of things, rather than just down to the chemo, as everyone else seems to manage GemCarbo without too much bother. I think I may be genetically lazy!
Tina, I hope this week flies by for you and get positive results from your Onc. The waiting around is just dreadful. I really hope things are a lot brighter than you feel.
Fairyqueen, I hope everything goes well for your appointments on Friday and Monday. Life seems like an endless round of appointments sometimes, still it is nice to know they are looking at everything for you. I hope you are wrong and you get good results.
