just wanted to pop in + say hi, although my eribulin days are now over!
Tillycat- hope u have a fabulous birthday tomorrow 🙂 U SO deserve it so I hope it's a brilliant day. Your friends sound lovely + I hope ur spoilt rotten. The chemo break sounds like a great idea too, make sure u make the most of it but get plenty of rest too 🙂
chemo queen- sorry the eribulin stopped working (it failed miserably 4me from outset)- but glad u have a new plan in place now x
Hope every1 else on this chemo doing ok- grannyscouse etc x
Suzie- sorry to read about ur recent progression. I know wev chatted before + u have given me some good advice re carbo etc. Sounds like we have both had sig progression + decline recently but keep the faith, all chemos work differently so ournew treaments might just make a difference. My experience of eribulin was not good- it didn't work at all- I had major progression everywhere in just 3 cycles. BUT my case is rare, eribulin is hailed as a bit of a wonder drug + most people seem to get at least a few months of benefits. In terms of how u will cope with it as you are feeling so poorly, I found it was easy street + know others who felt the same. Almost like not being on chemo (at least the 1st cycle or 2). My hair didn't fall out so it's not a cert- think the stats say around 50/50. Mine did start to thin slightly in 2nd ycle + it did increase but my hair was thick so was unnoticable to others even after 3 cycles. My brows + lashes gave started tothin even though I've stopped eribulin but I'm hoping the fact I've stopped will mean that will stop. I would say give it a shot+ keep everything crossed. best of luck x
I've started on xeloda last week, been a few delays due to me being quite poorly + breathless but so glad I'm back on chemo now following my disasterous scan results last month. Liver progression hasn't altered liver function thankfully but lungs really giving me jib. Breathlessnes + pain has had me in+ out of hosp but thankfully, I've seen some improvement in QoL the last few days.
Love to everyone, hope the Eribulin keeps working wonders for you all 🙂
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Another fab day hope u can all get a bit of nice weather today 🙂
sadie good luck for today 🙂 really hope they can get you sorted + fast. I know only too well how debilitating this pain can be. Be pushy + see if there is someone who can give u quick feedback today too, based on the levels of pain + sudden onset etc. Last thing u want is a fortnight wait for results! My onc is happy to have a quick look at images + give a provisional result If anything obvious showing, before the report is officially done. Lets know how u get on x
Sarah, great to hear from u + sorry for causing concern. Hope you are well + all is good with your boy 🙂 x
Lulu, well done you are nearly there!! 3 more rads! Hope you have some sort of celebration planned 4the w/e? Hope all is well with rhian as u say hopefully she's doing gr8 + that's why we haven't heard from her X
laura- hope ur still good + enjoying this weather 🙂 x
Jo- glad u feeling a bit better this cycle just so crap they can't get your pain issues sorted. I know my local hospice who are now involved with me have said they offer admissions to get things like pain issues fully under control with the whole palliative care team involved. Maybe u could look into it? Their input with me has been amazing and most of the time, pain is under control or at least bearable. Really hope you get relief soon + find some meds that don't cause even more s/e's. Hugs x
sandra- how u feeling? How's things with the avastin? U have any real s/e's on it? I could have had avastin with the xeloda through my private health but all my team put me off. But I know some people like u have fab results. Documented s/e's quite scary but it's nice to know it's there as an option 4me I guess. Nhs will only offer with weekly tax + I'm not going there as my bc was resistent to taxotere. X
tara- how u getting on with the xeloda? Feeling any better? I've been ok but tum a bit upset since yesterday so day 7 before any change in bowels! Nothin major + don't feel sick or anything. Can't say I feel any worse on chemo- don't think I could have felt worse than I did last week though!! Must start slapping on the creams though- been lazy so far but prevention is better than cure! X
hi to everyone else on here hope u all making the most of our heatwave 🙂
I had a good day yesterday, mornings are always tough, but feel a different person by lunchtime (but obviously have to take it very easy!). Met with good friends i've made through the hospital, we were all dx at similar time + thankfully, most are recovering well. Was worried about seeing them coz look so awful + had seen them recently so knew it would be a shock. But tgey were lovely + we had a nice lunch + catch up in a beer garden by ours. Was wiped last night, felt scary bad late eve but think the lack of sleep the previous night, hot weather + iffy tum was 2blame. Had a few hrs last night, feel crap now as i usually do this time of day so just lazing + watchin daytime tv + might venture out with mum to matalan this aft. So missing driving but my dad is now my personal chauffer!! He's delighted it's something he can atually do to help so he's giving lifts left, right + centre. I'm having a few jobs done on my car now + will advertise it next wk + put money in dans bank. The car is depressing me sat on the drive 😞
have a lovely day all
zile- not heard from you in ages. Hope ur too busy enjoying time at home in Croatia + are recovering well from the wbrt. Would be interested to hear how you found the plane journey? Not sure if I'd have the courage to fly again now with the air pressure and all! Hope u good anyway x
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hope everyone is doing ok + is getting the support they need 🙂
sorry I haven't been on- did post a long one at the w/e but lost it we were at the caravan + the signal is awful. Although it lets me on sometimes to have a quick read, posting on our caravan site tends to fail + with me being less mobile (+ not driving) we didn't really go anyw here for me to get a signal + try posting again. Laura did email me at the w/e + I assured her I was ok so knew she would be able to let u guys know if you were worried 🙂
anyway, firstly just want to say to sadie that I really hope your pain + concerns have been taken seriously yesterday? I'm hoping no post means they had u in hospital getting pain under control + investigations/ scans pronto?? It's a disgrace being told to wait weeks- have these docs got any idea what real pain feels like?? Sometimes a+e is the answer + a bit of exaggerating. They have to investigate pain so if you have had no joy go there, or see if your mac nurse can arrange at least an xray or MRI. Lets know how u are anyway- so sorry this is happening on your 'break'. Xx
Lulu- hope the rads are going well? How's ur mum did she get her results? Hope u have a fabulous day today with your daughter+ family 🙂 Do u have somethin. Nice planned? Enjoy xx ps been thinking bout rhiann + know you girls are friends. Hope she's doing ok, haven't seen her post in ages, please tell her I was asking about her xx
tara- hope ur ok + fingers crossed the xeloda kicks in fast (and for me too!). I've also been ok with the upset tum, a few sudden urges but not had the trots or needed the immodium at all. Any other s/e's? I guess it's early days for us both. Good luck xx
jo- how are you feeling? Any joy with getting the pain under control? Pain is so debilitating isn't it- it just wipes you out of energy + makes everythin so hard to cope with 😞 Goodness knows how u manage with a big young family. What is planned in terms of monitoring, scans etc? Do let us know how you are xx
laura- hope u still good Hun 🙂 Thanks for email at the w/e. Side effects Of xeloda still minimal? Here's hoping us other ladies just starting this chemo have a good response too xx
sandra- hope your much better now + can continue with the chemo + continue to have fab results 🙂 xx
hi to everyone else, lovely lavender + other posters + readers too 🙂 x
I'm doing ok, having some good periods which is such a HUGE relief I can't tell you. The last few weeks have been beyond hell + so scary as things have seemed to deteriorate so bloody fast. It's been endless trips to a+ e, tests scans, worry, delays, more worry etc. I really had been thinking this is it + started closing credit card accounts etc last wk 😞 I have been having episodes of breathlessness where even chatting has been a huge effort + has caused significant sob. That was the big concern of the onc I saw last week, the sob (shortness of breath) but also the severe back pain. They think I've cracked a rib (I can actually feel it mving and ckicking when I move, yuck). That combined with muscular strain from tge coughing fits, plus the infection + obviously the bc in my lungs combined to make the most excruciating pain I've ever experienced. Thankfully, cough has eased enough to give the area in Q a bit of a rest + a review of my pain meds has made things so much easier 4me. Still getting some nasty pain in back + legs but putting that down to spine mets.
I started xeloda weds night + as planned, defered the zolodronic acid until my next cycle. Thought flu-like symptoms were the very last thing I needed lol! So far so good on the chemo as I said earlier. Feeling tired but fatigue a biggie after wbr + the steroids + cough mean I'm lucky to get around 3hrs. Had a particularly bad night tonight, not sure why but had just over an hour 😞 hoping to get a bit of rest once dan goes nursery but by then I will have taken my steroids so I'll jyst make do with a rest on bed if can't sleep. Tend to feel bad in morning but I've really picked up over the last few days + had much better breathing during the afternoons + early eve + it's made such a difference. Being able to breathe quite normally even 4a few hrs transforms my day * my optimism that things could improve on this chemo. Really had been feeling so bad that part of me was thinking what's the point?
Really conscious about my appearance at the mo. Mght sound daft in the scheme of things but honestly, in the last month u can barely recognise myself 😞 Ive gained 5kg on the steroids, literally look full term my tum is massive 😞 Lost my hair + eyebrow/ lash thinning only just apparent from the eribulin and you know the impact thinning brows + lashes have alone. The main thing is the face swelling 😞 I've always had a round face, and have gained several stones ince my dx in jan 2010 but I literally look like someone has put a bike pump up my arse+ blew me up! My face is so swollen it's tight (not a wrinkle in sight tho lol). I look sooo strange + it's making m not want so see even friends + I'm so concious of going anywhere in case I bump into anyone. I'm even dodging
neighbours! It's just another thing to add to the bucket full of worries i guess- just unfair that on top of feeling like utter shi*e, I have to look like it too 😞 Going to boom a wig fitting for later this wk, have used my old one a few times + hate it. This heatwave is great but bad timing whilst adjusting to wearing a hot wig again! Dan not liking my tufty head either, keeps telling me to put my hat back on if he sees me without one in the house, bless him
right I had better go, just wanted to do a proper catch up + see how my lovely cyber friends are doing 🙂 will promise to post more often, just had a hectic few wks with being in + out of hosp + all the various probs + new appts etc. I tell u my bcn team have been rubbish, no support at all despite the brain mets dx (my allocated bcn hasn't so much as texted me since nov!!). But now every1 wants a piece of me, mac nurse, district nurses, gp, physio, occ therapy, family support worker, comp tyerapists, palliative consultant, etc etc. They've all apologised profusely that they're stepping in so late (that's another story) but it's been hard work seeing + speaking to all these people who want to see me just at the time I need to take it easy + rest!!
Love to you all, sorry about the essay. Take care everyone
ps Zile hope all is good with u and your not posting simply because you are back home enjoying time with tge family xx
hi to any
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I know someone who used revitalash + her lashes are unbelievable! Literally like spiders legs! She also bought from qvc but had no prob with subsequent fall outs. I think it's not uncommonfor lashes to shed again after regrowing because they grow + fall in a cycle + post chemo, the cycle starts approx at the same time so sometimes, new lashes reach the end of their cycle + fall out around the same time (must be a total smack in the face if this happens, regardless of what products have been used 😞
there are other decent products for example Liopcils, which goes on like a clear mascara + is clinically proven to boost lash length by around 2-3mm in 6wks. Not sure where this is stocked but I bought in duty free. I also used cargo mascara from boots, which is another one clinically proven + recommended for chemo patients. My lashes really did grow back thick + long so I think this stuff is great. And the fact it is an actual mascara rather than an invisible serum makes it even better value I think. These are available in boots online + cost £20 but I bought on 3 for 2 so a real bargain.
Hope that helps 😉 x
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hope everyone is ok- have been reading just haven't posted 4a few days. Thanks for pm's + my apologies if my absence has caused concern. I was just aware that I was turning into mrs misery+ didn't want2 keep posting + moaning. I also didn't want this 2turn into the tina show iykwim?!? Anyway, just posting a quick update + will catch up with everyone's news personally over the next few days...
Been up + down really but had some hideous pain issues which have really pushed me to my limit. Leg pain has sorted itself out, dvt ruled out so docs assuming it's spine-met related? The main issue i've had + still got has been the breathlessness + night time cough, but the biggie has been a severe pain in lower left lung/ rib which is beyond agony when I cough. It worsened over the w/e + by Monday, I was a bluey tinge as i couldn't let myself cough the wheeze due to the immense pain. Had hubby putting his full weight on tge area when I did have to cough but it was so bad, even morphene wasn't touching it. My new mac nurse prescribed a few more drugs yesterday + sum mega strong anti inflams made all the difference in combo with the other cocktail. So I was able to wait til my hosp appt tday to see a doc.
So my regular onc is away this wk which I knew but it was arranged I would see her colleague today (she's great- seen her b4). Anyway she was very thorough, and was a little concerned at my general breathlessness + description of pain. She admitted me for tests so I'm in hosp tonight but I'm glad really to be getting a real thorough once over. She said she will get all my meds reviewed again, get physio 2c me etc (on top of scans etc) and talked me into staying in). Everythin has been really efficient, I'm in a quiet bay, comfy, food is great etc so I'm good, and hopefully I'll be home tomorrow with my 1st dose of cape in my system.
I've had a ct today to check for a PE (lung clot). This was neg but I've had no formaal feedback as to the scan itself, any changes etc. Funny thing is that the agony is on my good lung, which is reassuring me that it's not 'just' cancer related, if that makes sense? Onc thinks I've badly damaged a muscle coughing but prob cracked a rib too- awaiting xray reports etc on that but it would explain the pain levels if that is the case.
Onc has agreed to let me defer the bone meds til next cycle. She has promised that she will get me on the capecetabine in the next few days. She just wants to get my pain under control+ make sure there's nothing else major going on before I start. I'm happy with that + praying the cape is kind to Me but hard on th BC. Nodes at clavical really swollen + it's stressing me out looking at them. Oh, and my already thinning hair started falling out in clumps yestrday- it's bloody everywhere. Will shave whatever is left when I get home.
So things been pretty full on, coping so much better now pain is bearable. Have been enjoying doing bits of normal stuff + hoping the chemo improves things + my quality of life improves (+ quantity also). So difficult seeing what this is doing to my hub, mum+ dad. Try to not crack on when I'm struggling but had a few really full on pain days where I just can't hide it. They are brilliant but it's naturally hard for them to see me suffer especially with it being one thing after another for the last few wks.
I will let u know tomorrow how things are, fingers crossed I'll be home, back on chemo + on the up.
I think of you girls all the time + appreciate your support as you know 🙂 Will catch up properly over the next few days.
Just to mention quickly again tho, those of u looking into trials, there is a new+ exciting one in harley st at the Sarah cannon research institute for a new tnbc receptor. It requires tissue testing but defo worth looking into. It's not the same as the prostrate trial so worth investigating ladies. I will be discussing both trials with my onc. Also, has anyone heard if there has been any developments with the marsdens plans to run a parp trial for brca neg ladies? I know it was being planned 12m ago but have heard nothing since? It would be an exciting opportunity as there is nowhere else in the uk offering parps to those without the genetic mutation.
Love to everyone on here, Tina xxx
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just wondering if any of you have experienced anything like this...
I'm newly dx with spinal mets, no other bone mets at this point. Got lots of other stuff going on, pain increasing etc. Yesterday, I woke in total agony in my left knee, which was radiating up tiwards my hip. It was constant but the level of pain was variable 4a few hrs. Took oramorph + cocodamol + by late morning I nearly passed out with the pain so went the hospital. I was green with the pain.
Obviously the main worry was a dvt but the pain was so bad I thought maybe I'd had a fracture or something. Various tests have not picked up a dvt thankfully + nothing obvious on the xray. Docs think most likely to be spine related, which seems logical but they want to repeat the Doppler dvt tests next week as a precaution.
Just wondering if anyone with spinal mets has experienced this sort of searing pain in the leg, sudden onset, etc? I just feel like it's one thing after another at the min- unbearable pain in my leg wasn't something I had expected based on what is going on. I'm starting to worry now that if the spine met is affecting my leg in this way, am I going to end up in a bloody wheelchair or something? Just seems so bizarre that this happened so suddenly + painfully.
I know anything is poss with this bast*rd of a disease but it's good to get real feedback from those going through similar things.
As ever, I'm grateful for any advice 🙂
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just a quick update...
My onc has convinced me to delay chemo until next week due to my bad chest. She wants me to do a week of anti bs as she feels it's too risky to start a new chemo whilst I'm fighting an infection. I'm gutted naturally as I want some chemo in my system NOW but I know she's right. I've coughed up some nasty stuff in the last 2days +I'm quite relieved that my breathing issues are prob not all cancer related + should improve at least a bit with sum meds. She is not concerned about the delay, she can hear my lungs working well (aside for the infection crackle on my good side)+ we discussed my liver function which is fine apparently + unchanged in the last 2months in spite of the progression. So I feel a bit better in that I'm not going to keel over (hopefully) in the next week + I'm sure another week of rest after the wbr will do me the world of good + hopefully I'll be much stronger next week when I start the xeloda. I've agreed to start the bone drugs next week too...
Hoping for good news from laura later on today- thinking of you x
hope everyone else is doing ok today 🙂
Love Tina xxx
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My hospital have beenvery generous with prostheses, I seem to have about 10! Have found it difficult getting it just right, being quite large breasted. The proper swim prostheses are good as they are soft but weighted so they stay in place. You just have topress them descreetly when leaving the pool to squeeze out excesswater.
I have a few spares (normal + swim ones) + would be happy to pass on as I know they are siilly price to buy + they are currently just cluttering my wardrobe. Obviously anyone a similar size is welcome. My mx is left side + I think I have sizes around 9-11.
I also have some lovely post surgery bras mainly m+s that have been barely worn coz I gained alot of weight post mx so went up a good few sizes. I have a bundle of 38ds, autograph, per una, amoena etc.
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just wanted to wish you good luck + bump this for you. Yes it is possible to have a recurrence at any time- mine happened immediately after chemo + I've heard of other ladies having probs even earlier + obviously later on. are u on any ongoing treatment like tamox? Some cancers are more likely to recur quickly, like triple negative but even that is rare.
However, the important thing to remember is that most cncerns are benign. Especially after the full works treatment wise. I am glad you are being checked out- hopefully you will get the all clear + be able toput this behind you.
Please let us know how you get on- best of luck
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thanks for all the support yesterday from tn + non-tn friends. I really do appreciate u guys I hope u know that 🙂
I'm feeling a bit better tday emotionally + as ready as I'll ever be for the new chemo tomorrow. Thanks for tge bone drug advice, I'm not dismissing the treatment altogether I just think I'd be mad to have anything not 100% essential this week as my body is going through enough. My onc also wanted me to see a dentist first + to be fair, I've barely moved out of bed so that's not gona happen just yet.
The cough is still a pain, less dramatic last nte but still bad enough to keep me awake most of the night. I might hav2 look at asking for some sort of prop for bed (an adjustable hospital matress would be good lol). Tried the morphene, god I was spaced out for about an hour + still giddy this morn so might try a half dose tonight.
Tara- good luck with your decision for weds. I would always say give the chemo a try especially as u are pretty fit + well so should cope ok. I had 3 tax in my original regime. 1st one was really bad, I won't lie but the next 2 were much easier. Maybe discuss doing a combo of 3 tax, with 3 of something else like carbo? Or ask about weekly tax which is meant to be more tolerable? I only felt bad from day 3-6ish but was flat out. Good luck x
Laura- good luck for tomorrow. Surely no news is good news? I hope so, especially as ur finding the xelda se's so managable. I've just ordered some udderly smooth cream from amazon + have 2 huge pots of E45 at the ready. Just hope my bowels can take it! Do let us know As soon as u have (good) news x
lulu- hope the rads are going well + aren't wearing u out too much x
Hope/ Jo- how are u feeling on the xeloda/ avastin? Hope the pain has improved I'm thinking of you lots, let us know how things are going x
sadie- how are u? Ur back any bettter? Hope the kids are ok+ u did something special to celebrate ur dd's super
Zile- thanks for your pm last nite. Hope ur feeling ok + prepared for the new chemo? How are the se's? I'm having some very unpleasant headachey twinges on+ off + sudden onset fatigue but nothing as bad as I expected. Hope ur ok x
sandra- hope u enjyed your birthday + treatment is still going well 4u x
Sarah, thanks for sticking with us you are a lovely lady. Hope ur well x
lavender- you too 🙂 x
hi to everyone else Reading too x
take care, Tina xx
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thanks for your posts. Decided against seeing a dr today, just couldn't face the a+e experience + that would have been my only option today. My breathing is much easier through the day, it's the night when it becomes a real prob. Maybe coz I'm so tired by night + obviously, lying down still highlights the wheeziness. My ribs ache + my brain really could do without the rattling from the cough obviously...
Don't get me wrong, Im getting around, doing a bit + am not needing oxygen etc at this stage. Can get up stairs ok, just slowed down a bit. I think when breathing plays up though, it can be pretty scary + I know of too many lovely ladies who have declined fast once breathing issues really kicked in (our friend claire for one).
I am going to take some oramorph tonight as onc says it can help relax airways etc. If I have another bad night, I will call my onc in the morn. I have seen my scans + onc has explained what is going on in lungs (prob haven't explained on here given my mets are so wdespread now?). Basically there are a few small mets in the lungs on this scan, but the big problem is nodes. I have a few hefty ones in lung + pleura + they are taking up space meaning my right lung cannot fully inflate. Put simply, the very top of lung is collapsed. Onc said it's working on about 80% volume but other lung ok. As the lung is squashed a bit, it is also restricting the airway into the lung, hence the wheezing. Onc assures me lungs are working fine, plenty of air getting in + out. It's just causing alot of irritation 😞 I have some really big nodes in centre of chest too which may be irritating my windpipe too.
This whole thing is just shit. We shouldn't have to be going through this. I can't help feeling particularly sorry for myself + my family given Ive not even reached half the average life expectancy. Family are all at breaking point but are just about holding it together. Poor dan is oblivious to the nightmare unfolding around him. He is 3 in early may + I'm praying I can improve a little on the xeloda and be here for him for that.
I've finally been referred to the palliative care team at our local hospice so should get a mac nurse and hopefully some support for my family then.
I should be starting bone strengtyeners this wk but I'm going to abstain 4a little while. I've heard it can cause fluey side effects + I think the s/e's from the wbr + xeloda will be enough for me to deal with.
Love to everyone, tina xxx
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Good morning ladies
hope everyone is doin ok. I've come on for a bit of a whinge- hope u guys don't mind...
I'm really worried about my breathing 😞 Great distraction from the brain mets dx which is a good thing I guess but I feel certain that my lungs are my biggest threat at the min. Feels like they've got so much worse in the last month or so but the last few days I've really seen a difference. It's hard to get advice of fellow lung metsters as most seem symptom free like many of u lvely girls on here. The cough is driving me mad through the night, it's rattling my brain which I SO don't need right now, and it's scaring me too 😞
I'm debating seeing a doc today jyst in case there is a bit of an infection brewing as my cough seems a bit wetter + slightly productive, which wasn't the case previously. I'm naturally praying a pleural effusion isn't brewing as that is my 2nd big treatment fear after the wbr. Seeing onc tesday+ due to start xeloda but thinking it might be wise to get checked over sooner? Why does crap like this always happen at wkends???
I think the morpheine will be getting used tonight- anything that might help has to be worth a shot. Just need some sleep after the last few weeks.
If anyone does have any recommendations to ease the cough/ wheeze I'd be really greatful - it's not 2bad during the day but night times are hellish 😞
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can I ask for some advice? I have widespread TN mets including troublesome nodes in pleura + early lung mets. My breathing has been wheezy for many months now despite nothing too drastic showing on scans til recently. Anyway, my breathing is deteriourating + it scaring me somewhat. I've just completed wbr for newly dx brain mets yet my lungs are my main concern. Had a bad night last night, chest feels a bit wet + the cough was relentless. Starting to worry about developing a pleural effusion or infection. Seeing onc on Tuesday + starting capecetabine then but wondering if any of you can recommend anything that helps settle your symptoms especially at night? I'm desperate for some decent rest especially after the fortnight I've just had + would appreciate any suggestion. I have oramorph at home + will try that tonight to see if it helps. I'm currently taking low dose Valium, zopiclone + co codamol before bed.
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I didn't meet nhs criteria for testing despite being just 32 at dx. We opted to pay ourselves once I had a recurrence as I wanted to know if I did have a brca mutation as it opens up some treatment options (eg parp trials). As it happened, nothing was found but I'm glad we had the testing done (although I think it's wrong we had to pay!). We shopped around + got a great quick service at a brilliant price- around £650 I think + results within 6wks.
Hopefully the nhs will pull their finger out on this + offer fairer testing soon.
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So sorry to read this juls 😞 There is a triple neg secondaries thread in the 'living with secondary bc' section + we are a very friendly + supportive bunch. I will bump it up 4u now. Between us we sadly have a wealth of experience relating to stage 4 treatments + would be happy to support + advise u in any way we can. Will be keeping everything crossed that a new chemo really hits the spot.
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