Wow Sadie - what fantastic news…a great start to Christmas!
All those s*** chemo side effects are suddenly made worthwhile…keep up the inspiration xx
WOW that’s excellent news sadie :))) Bet that was the boost u needed! Your bc clearly responds brillantly to chemo, which is fab. Long may it continue xx
Nicky how are u feeling btw? Was the wbr as bad as you feared? Really hope you coped ok- been thinking about u lots xx
Hi all sadie that is great news bet y well pleased. Update on me I’ve had loads neck pain going up to head for a couple wks now gp done neck x ray nothing showed up spoke to bcn today she had talk to onc they r gona scan my head and neck on dec 29th as she saying I’m getting intermittent pain so another worry to add to my others hoping it not skull mets I’ve no other symptoms but like we know we are not all the same I’ve a terrible cough witch gp gave me anti bio for no luck i have now been given a pump to try sort it I hate all this ESP on top of Xmas hi to all hope y ok Laura
Sadie that is absolutely fantastic news! Wow what an amazing chrissie pressie that is!
Laura good luck with your scan and hope you can get the pain under control and that your cough gets better soon x
Good luck tomorrow Tina… Give the Chemo a chance it sometimes takes two or three to put the cancer into reverse hunny… Maybe it’s slowing things down at the moment but just not enough yet to make a big difference… Fingers crossed this one does a bit more zapping than the last one xxxxx
I got my Hickman line in yesterday… It wasn’t the most fun experience iv ever had and feel completely knackered now… And can’t have a shower at the mo as the only dressing I have isn’t waterproof 
Much love to all
Lulu xxxxxxx
Great news, Sadie!
Ouchy, Lulu, but now you have it in you won’t have those “Will they find a vein?” nights before each chemo.
Tina, hoping that you find it a good consultation tomorrow, that you say what you want and feel listened to. Hoping that they have some good answers. Peppa Pig sounded good, and all that doing things even if it’s not the food shopping!
Love to you all
Lavender
Hi All
Hope all as well as can be, this carbo/gem is tough between cycles isnt it ? I had 3rd yday and hoping less tired inbetween than last ones as dose has been reduced. Is working on skin so hope means so elsewhere. Seem to be in a bit of a hole at moment and hard to get out. Friend has stopped treatment now and is so upsetting as keep thinking me at some point but try not to. Think Christmas brings it home but trying for kids to be upbeat even though dont feel it. Had an appt with Onc and not having a mid posint scan just carrying on. Was talking on next chemos I could have which i found depressing as some time without chemo would be nice for us all. Lets continue to hope and pray they come up with some sort of maintenance very soon. Hope everyone else is coping okay with christmas as tiring getting everything ready etc.
Lulu - when do they decide on hickman ? My veins very sore after chemo as had 27 now in veins.
love to all jo x
Hi girls
had a nghtmare day today- severe allergic reaction to the carboplatin Literally couldn’t breathe, face was purple + bright red itchy blotches all over torso. Worst of all, nurse looking after me didn’t take it seriously initially as she knew iv had bronchitis so thought it was just a bad coughing fit! Anyway, was still strUggling to breathe an hour later, wheezing like mad so onc won’t let me have any more carbo as she thinks next reaction could be even more serious. Feel really anxious that my options are runnng out. She is looking into funding criteria for eribulin + checking if I meet the trial criteria for the taxol, avastin + metmab trial. We are meeting next week to discuss. Capecitabine is another option but one I’m not keen on as I’ve not really heard of many tn ladies having any joy with this chemo. Feel in limbo
She wasn’t overly concerned about eye prob given it’s ok at the mo (phew) bt does want me to contact her if it kicks in again. Were hoping it was a consequence of all the coughing (burst blood vessel or something).
Girls have any of u had any joy on capecetabine?? Have any of u not reacted to taxotere but had a good response to taxol?? I think she wants me to make the choice + I’d like some 1st hand experiences if poss.
Thanks,
love tina xx
god tina that sounds scary how awful to have that reaction,hope you feel better now…but what a dilemma for you i too didnt do well on tax, on cape i had initial good shrinkage in lumps but was short lived for me…i have2nd gem/carb on friday cant see any response yet.sending you love and hugs xxx
Thanks rachel 
It was pretty bad- didn’t want2 make a fuss so was suffering in silence initially but got really bad. So unexpected really thought carbo was an easy chemo which my body toleraed well…
How are u finding the new regime? The se’s manageable? How is the pleural effusion situation? Hope it’s working even if improvements not obvious to u at the mo. Got everything crossed 4u as u no xxx
Jo(hope) sorry to hear about ur friend it is so hard when someone close is suffering. It’s a double whammy of emotions as so close to home, isn’t it. Really hope the reduced dose helps u manage se’s better + that yr able to enjoy the Christmas build up with ur babies xx
Hi all omg Tina poor u thanks for pm my scan is not to 28dec so will have to see what they say I’ve had a chest inf been on anti b but no change in cough so he’s put me on a puffer to see if that works that trial I was offered at my hos ages ago but because it’s a blind one we decided was to much off a risk to take on a maybe also se were not iffy I was also on taxol /caboplatain but not sure wat one done the job like you loads of pain in lower side by rib I’m sure things have grown and this cough as got def worse hope u get somewhere tc Laura
Hi Tina,
Sorry to hear about your reaction, it must have been very scary for you. I am not as you know technically triple neg, but my cancer hasn’t responded to any hormone, in fact I had progression on all of them! so I am being treated with capcitabine, I have actually responded very well to this so far, I had side effects on the first one, but the next 2 have been fine, a little peeling on my feet, but nothing debilitating. And most importantly my latest scan showed reduction (the only positive one I have ever had!)in my liver and lung mets. It does work! and the ‘xeloda and the week off’ thread has many people recording stability or reduction. I am not sure who is triple negative on there, maybe post asking if anybody triple neg, has had success on xeloda?
I wish you all the best and hope you have a successful treatment plan in place asap xx
hi tina,to be honest was so low after the speech from doc at marsden that i just slept and cried for many days so really didnt notice the se’s last time, my breathing is becoming tough again but want to get this chemo done then see its all so crap isnt it?sending everyone love and hugs xxx
Hi all
Tina , omg , that must have been so scary for you. Hope yr feeling bit better today. Thinking of you,x.
Sadie, brill news for you, just what you want for Xmas.
Lulu, didn’t know you were having a hicman line, did you have GA.?, I’ve had mine since July, with GA,
Have dressings on site all the time, easier to bathe rather than shower, I found. But much better when veins so terrible.
Having chemo tomo, avastin, seen my onc last week, she said I’ve got funding till end of jan, then hopefully another 3 months after. Next ct scan in jan for me.
Thinking of you all,
Hugs
Sandra xxx
hi gingerbud,
i was just reading your post, about all the worries you have, you are like me and loves your holidays i too goes to dubui, regularly, my sisterinlaw lives on the plams its a lovely place plus we stayed in the atlantis, in bahamas, when i got married. i am going to egypt in jan now that i have no worries now that i am cancer free. all the best x x
Hi folks hopefully won’t be absent as much now my Internet has been fixed but may still be in hiding a wee bit over the next few days after Chemo no 3.
Hope sorry your feeling a bit down it’s hard when you see your friends deteriorating. So I’m sending big hugs as I have lost 3 very close friends to BC. Xxx regarding te hickman they eventually decided now they had used my last useable vein after 3 attempts to cannulate at the last visit that a Hickman was a good way to go. It’s settling a bit now and the tramadol is helping too… Was a palaver to get it authorised though as onc was very negative saying you will get an infection or a clot and can end up in icu or die! I was like cheers for that… It’s not something I just fancied my viens were screwed after my first Chemo two years ago and never recovered… Well they were crappy before then too but the Chemo just finished them off… Onc wrote on my Chemo referral may need Hickman but then when they had probes at first Chemo he didn’t authorise it so after second one and the backing of the nurses they did… My veins def wouldn’t make it to 27 chemos… If your veins your arms aren’t totally screwed the ones in the upper part of your arm they might be able to do a Picc line instead it’s still finishes in the same place but cos it’s on your arm it’s nt quite so noticeable but you need to wear some kind of sleeve to keep it from fapping around… The one in the chest can be tucked into your bra if you wear one… I don’t tend to so havento wear a vest top under Neath to meet it from getting caught like if I lean on it.
Sandra mine was done under LA and wasn’t fun but was ok I just lalalalalalalaaaaalaaaalalaa’d my way through it but the nurse was trying to get me to lalala Christmas songs lol the staff were great really put me at ease and were utterly fab… If I even need more Chemo I’ll def get it done again… We are Chemo day buddies I’m getting done at 9.30 I hope it won’t be such a longndays as last twice iv been in for over 7 hours each.Brood I’m not allowed baths as notbto submerge dressing so a few splashes in the shower is ok but make sure it doesn’t get soaked… I’m also getting a shower chair as I have been sitting on the floor to was as so knackered so think the shower chair is a good idea… Also been offered a wheel chair but not sure I need one… Tend not to go out when I feel zonked but then maybe if I had a wheel chair I’d be more inclined to go.
Tina I had a bad reaction to tax having hallucinations and big purple swollen face… Cannot remember if I had breathing problems because I promptly conked out… They gave my piriton and hydrocortisone infusionsnand then the tax at a very slow rate to see if I wasbstill reacting and whenni wasntbthey werenable to continue it… Now I have piriton and hydrocortisone before they start the chemos… I do get breathless following treatment and feel faint and get palpitations but they are worst duringnthe first 10 days but then gradually get a little better but still have to stop for breath climbing the stairs… I hope you can get something sorted… It’s eels so IDDD you would have a reaction now after taking it before… Ghats very unusual normally you would get a reaction on your second exposure although some people react after a first exposure but rarely after that. I worn if there was anything they gave you that you havent had before? Like a change of anti emetics or steroids etc as that would have been your second exposure to them? What a dilemma to leave it up to you to decide but I think if I were you I’d find out if other drugs were new as the carbo wasn’t and seems dubious it would have caused a reaction so late on. Take care
Laura hope the chest infection gets better soon… Did you do a sputum sample? If not and it’s not improving send one in to be sent for mc&s which will indicate if the ABs your on are actually the ones that bug responds to…, hope it starts improving soon and the cough settles down a bit.
Rachel sending you a big hug hunny xxx
Micky really pleased to hear your responding so well to the xeloda… Long may it continue… Do you know how hormone positive you were as people weakly hormone positive are sometimes considered TN… 0 and 2 is def hormone neg, but sometimes 3 or even 4 is classed as this too 4… 5 and 6 are good and 7 and 8 is strong… 3 and 4 is often referred to as oestrogen poor… And the hormones may not give much benefit.
love to all you lovely ladies xxxxx
Hi ladies I just wanted to let you know that I had my 3rd chemo with taxotere and Avastin on Monday and I too had an allergic reaction 5 mins into infusion. I felt very not, went very red, chest tightened, struggled to get my breath and felt sick and dizzy. Thankfully the nursing staff stopped the drip straight away and got me onto oxygen and the symptoms got better within 10 mins or so. It seems that they were pushing the taxotere through over 30 mins which induced speed shock? I thought it was odd to have a reaction to something I’ve had for the 3rd time and not before. I was desperate to get my half way chemo under my belt so the dr agreed to trying again giving the infusion over 2 hours with close monitoring and all was ok.
Had an awful day today, spent most of it sleeping in bed. Perhaps as well.
Take care everyone - love and prayers and best wishes to you all
Sharon x
I’m hearing so many woman suffering from reactions to chemo being pushed through too quickly, what on earth is going on? In my small circle this must be about the 7th time I’ve heard this over the last few weeks.
Hi ladies
thanks for all your supportive messages feeling ok today aside from the usual dgestive se’s (not helped by my ravenous appetite- tganks steroids!). Feeling quite angry about what happened yestrday- the incompetence of the nursing staff was unbelievable. Telling me I couodnt poss be having a reaction to carbo+ leaving me to gasp for breath. I ended up having almost 450ml out of 500 total which shows how long it took to be taken seriously. Only when I flashed my tummy in the full treatment room to reveal bright red rash did she decide to stop the drip + get me some piriton! She finally got my onc well over an hour after the reaction started! Can’t believe they increased the speed if it’s a known fact that reactions happen most on the 2nd round of carbo following a treatment break. Will be sharing my experience with my onc next week, who I’m sure has no idea of how badly it was all handled + how long I was left to suffer + made to feel like a hyperchondriac!!
Wendy- it seems the chemo wards are becoming conveyor belts. They can’t wait to treat us + get us out regardless. Wasn’t aware of this being common (altho I knew reactions can happen on tax). This is our lives tgey are messing with! Nurse did say to me the policy has just changed on carbo + speed of infusion so maybe that’s the case with other drugs too? Hope ur well anyway + the gem carbo is still working a treat xx
lulu hope chemo has gone well today + se’s aren’t too bad this wk In answer to ur Q, I did ask if there was any drug changes this cycle but no, only the speed of infusion changed (onc thinks reaction would have happened anyway but speed made it worse). She explained that allergic reactions to carbo+ other platinums, are more common the longer a person is on the treatment. Most people sail through the first 6 cycles but repeated exposure especially after a break, can trigger reactions. Shame the chemo nurse treating me had no idea about this! I’m just gutted i’m in this situation right on top of Xmas. In fairness though, I can’t feel any improvement as yet with the nodes so I don’t think carbo was helping much. Rest up xx
Sarah- thanks for the pm. You are lovely Hope ur well xx
hi + welcome to Sharon Sorry to hear you’ve also reacted to chemo. It’s horrible + very scary isn’t it? Are u triple neg too? Hope u get great results from this chemo- are u primary or secondary? All the best xx
hi to everyone else- Rachel, laura, sandra, sadie + anyone else I’ve missed xx
love tina xx
Tina I wasn’t aware that you got more susceptible to carbo reactions after a treatment break think that’s something they need to make staff and patients aware of.
I had a slight reaction today with a bright red face and then reacted to the tegaderm used to cover my hick and wounds and be we red and raw had it changed to AA hypoallergenic dressing and although still red it’s def getting better… My tax was meant to be going over an hour but now it’s two hour wil a very low rate for the first hour and then increased for second hour… Carbo is still infused over 30 mins but as I have piriton and hydrocortisone before carb there is no way of knowing I would have had a reaction to it.
I wouldn’t write the carbo off just yet can they notvtry giving you the piriton and hydrocortisone prior to the carbo run at a lower rate to see if that would be ok… Especially as you had such a good reaction… And remember it’s not all about shrinkage it’s about cell death so sometimes it doesn’t shrink but the cancer cells inside the lump or nodes die anyway.
Love and hugs xxxxx
Hi all
how is everyone today? Hope ur all doing ok+ every1 is coping well with treatments etc
I’ve felt awful todaybut temp is ok, think weds has just took it out of me + obviously the anxiety relating to the next step is tiring me out. Collarbone defo feels worse to me + been having twinges in liver area so I’m panicking a bit + keen to get on a new treatment asap.
Dan had 2 parties tday + I just wasn’t well enough to go so daddy had 2take him. Gutted- I obviously like to do special stuff with him but felt too sick today
hoping xfactor perks me up!!
Lulu- hope ur feeling ok post tax. Carbo is defo written off 4me now as my onc has said no way would she risk it again given my breathing was so badly affected. She said if I’d ‘just’ felt sick, got a rash etc, then she might have tried it again but I could barely breathe + she said next time the reaction could be much worse. Maybe it’s happened for a reason- trying to remain positive bit difficult when in limboland!! Take it easy xx
love to everyone on here, take care xxx