I dont know Kay, so many ex nurses and nhs ladies seem to have bc or other. I read somewhere or there was a book...said cancer personality = too nice...think we all give so much to. Others and then may e get low on energy for ourselves?
i realise that we could be in the minority on BCC Tho...as we. Know, noone is immune.
my breast surg cons died of lung. Cancer..he was such a sweetie...in fact he was really the lead in BC in our hosp.
Anyway Kay, i do know how very hard it is to push when you are ex nhs, you feel you have to be a 'good patient' never mind.
love and hugs.....
mine are all behind my silicon implant that I had done after mastectomy and down sternum they have pushed my ribcage over to my left side I know the one on my lower left right side as shrunk and the one trying to come through skin on sternum as not grown and I think the one at top of sternum as also but as I had multi tumours in one capsule of liver and in the other capsule a 7cm tumour I wanted to know if they were shrinking or even gone (can hope) i also have tumour in my spine but that has not moved since radiotherapy 6 years ago plus I have one in node in my epicardial pad fat and under right arm
the annoying thing is if I offered to pay I bet I would be in within the week I did ask my bcn when she came couple of weeks ago to chase it up she is away at minute so when she comes back I will ask her to print my bloods off with tumour markers she will have to do first one again because I can not remember I think 94 but I will have to start writing things down
my friend started her first chemo Monday she is bowel letters got lost down to 6st I at to ask my friend from work specialist colorectal to look out for her in the system anyway she has now been operated on and started so that is good ,
went for pre chemo bloods and my opd manager was in there looking very pale she had breast 2 years ago on aromadex now no chemo just radiotherapy but she now has a new primary lung which she said had gone to liver so I have just sent her a card saying if she wants to talk or just company I would come
said I would not be offended if she didn't she lives on her own and is a private person and not everyone wants to let it all out as I have found out before when I have offered to befriend
any way you take care
thats good then at least it is buying you some time
i on the other hand have just completed cycle 6 expecting scan that they put through after cycle 5 guess when I will be having it mid August that will be after cycle 8 I am very disappointed as I wanted to know if the ones on my liver are shrinking but I suppose on the scale of things another 2 months is nothing but at least I could have settled a bit (hopefully) I do not know why it is 2 months longer than I have been told other than now they do 7 days a week I would have thought they had caught up a bit by now I do know there has been a big influx of cancer diagnosis recently so that could be why but even August will have to wait 4 weeks for result unless they have improved on that so prob will have had cycle 9 before I know ct results
take care wishing you all as well as you can be
Good news Nicky, thanks for the update
hope everyone else is coping
Just reporting in after my CT scan last week. I have seen the actual scan with my onc yesterday but don't have the written report yet however the main pesky lesion in my liver that hadn't responded to the last treatment I was on has now shrunk - hooray. Not sure by how much until I see the report next week but at least it's not growing! All other mets seemed stable as well.
Generally not getting any side effects except for a change in taste after the first dose, but not the 2nd. Hair still hanging in there and growing, I'll need it cut soon, but hope some new growth helps cover the baldy bits (they're not too bad and can be disguised with a hairband). Eyelashes and brows definitely thinned so it could be time for some false lashes soon - ED can help with those and says they stay on for a few weeks so wouldn't need to do them every day. I've stopped taking the steroids and don't really have any problems, very occasionally a short spell of nausea but if needed I take an anti sickness tablet.
Hope all other spongebobs are coping with the treatment - and the hot weather.
thanks for that I will look into the eyebrow tattoo I do use a good eyebrow pencil by young blood mineral range and one from benefits but though they say stays on for 12 hours mine does not due to being hot most of the time
Glad you are pleased with your topper unfortunately my hair went apart from the back and sides but that just thinned and I am also an allergy case and one of the ones I am seriously allergic to is parabans which is in most beauty products so I would have to be patched tested if I did have eyebrows done
i have just started cycle 6 and this is my bad indigestion day so I can only eat very light today taking lansoprazole before each meal I am also awaiting for date of my first ct scan on eribulin
Oh, thank you Helen,xx
yes, im afraid I havent had a moment to spare and forgot to feedback here.
its only a very tiny change and To be honest im happier to stay on it for a little while. Hoping things are ok with you, and also all the other spongebobs xx
My eyebrow tattoo didn't hurt at all - maybe just a tiny bit nippy when the therapist went over the outer part of my brow but overall it was fine and well worth it. I have had mine touched up and that part of my brow was without the nippy feeling that time. The numbing cream is sooo good.
I have got got my hair topper now - got it on Saturday and feel amazing. I think if my hair does ever come totally out, I will stick it on with wig tape! When I was at the salon, I met a girl who had no hair due to Alopecia and she was getting something similar to me but it was getting stuck on and she could wash her hair as normal. It would only get removed and replaced every few months. I think I would go down that road if down the line I am likely to be permanently bald on treatment - provided I could still afford it!
U look good, your face is radiant, exudes with energy.
Is your cancer always hormone negative? I'm sill puzzled with this. Or maybe it's really not important. I've asked my doctor this week to check on the molicure to see if that will provide more clues For treatment. Some times I don't think doctors really care that much, or maybe they have to stay distant from patients to be emotionally healthy for their profession.
i used to work for BHP and had been to Sydney and Melbourne once on biz. It's sooo far from TX. Always want to go to NZ and Australia to find the hobbits and see Maggie's big rain.
Thanks for the feedback. I'm not afraid to change med from Taxol to Eribulin now. Changing is good. Just like traveling changes daily sceneries. I'm sure it will bring out good for everyone.
So where do u want to go when your next break comes up?
Hello cat girl,
My heart breaks to read through your sufferings. When my cancer came back last year, the tumors on lymph nodes pressed some peripheral nerves on my left arm. My whole left arm and fingers got very puffy and numb, I could not raise my hand to wear contact lenses or even wash my face, not to say dressing myself, buttoning, putting earrings or necklaces (and I thought I had frozen shoulders or lymphodema). Tumor also pushed and fractured my c7 spine. My right side back had this excruciating pain that I really wanted to die. Then I bought these zero gravity chairs that would raise the leg and recline the back, also with pain killer and the Taxol chemo, things were under control for a while.
i started taking voice lesson to sing (just to have a happier distraction) and go out again. I also go to a natural healer 2, 3 times a week. He gives me a lot of encouragement and support that words can not describe.
Taxol reduced several tumors but increased numbness. I lost my rings a couple of times. So I've decided not to wear the more precious ones. I stay with hook on earrings and long necklaces, so I can still be myself, just easier. In general, I Do not talk about my treatments with non cancer patients to reduce my own emotional strain from repeating the unhappy situations over and over.
my husband juices vege juice every morning for me with carrots, beets, apple, turmeric and dark green leaves. I eat oatmeal with nuts and boiled egg for bkft. I also eat more salad in general. All protein goes on top of big plate of greens. I try to walk a bit every day after dark (so I just go out bald, or liberated as my husband will say). I still work mostly full time, just no travel plans, no liquor.and limited public exposure.
Hope everyone has a lovely weekend.
Wow Marnster it looks AMAZING- and so do you!
Luluroe I started with BC oestrogen neg, the next episode was pos and they all stayed pos until this latest episode which is a combination of both.
Kay sorry to hear about your latest upset- hope you begin to feel brighter soon. Let us know when you get your scan date.
Moijan, all the animals seem to ignore eachother and do their own thing.
Helen hope you're enjoying retirement?
xx to all, and everyone/anyone else
i too am triple negative and have been on Eribulin. I had five rounds of it after I received my secondary diagnosis in October 2016. I found Eribulin very tolerable, but I have also been very fortunate in not having any severe side effects from a whole range of different types of chemos.
Unfortunately, Eribulin was not effective on my tumours so I have changed to a different chemo combination. I have just completed three rounds of a carboplatin/gemcitabine combo and I am having a CT scan on Monday to see if it has been effective. I am also getting an MRI on Monday to check my brain, head and spine as in the past 10 days I have developed a numb chin, lip and gum on the left side of my face. We are checking to see if is a new tumour in my brain or in my jaw that is pressing on a nerve that is causing this numbness. We shall see.
I have mets in my lungs, chest wall and various lymph nodes. We discovered a met in my brain in February and I had stereotactic radiotherapy on it and that was successful in shrinking the met by almost half.
I am in Australia and have been using my breaks between treatments to travel. In the past week I have been in central Australia checking out the sights, including the incredible Uluru. It was a pretty amazing experience.
Hi All and welcome Luluroe
well after saying I was raring to go which was how I felt last Friday
Saturday came down with a bang started to get shakes Saturday afternoon head felt it was wobbling hands shaking I got home and was so exhausted I just took myself off to bed then in the night started with diarrhoea all night my head was thumping my eyes hurt sore throat blocked nose muscles in legs and arms aching badly
so now a week later I still have score throat nose and muscle aches but I am up even if I feel weak.. I could not believe it just getting over the shingles my first chemo out of isolation and I come down with what I would say was flu or has it was my 2nd dose of cycle 5 was it chemo overload will never know
start cycle 6 Wednesday then When completed cycle 6 will have my first scan on eribulin which will be a ct to see if it is working I hav asked to have it on my week off but they can not guarantee it will be so I will have to see how it comes through and if not cancel it and make one my self to suit
I hope at last sorted my ibdegestion out I now take 15 ml of lansoprazole before my yoghurt for breakfast again with my soup (no bread) and again with before my tea which is a light poached fish and I had no indigestion at all so I will stick to that every Friday which is 2 days after chemo my week off I eat anything so out for lots of meals
hope all you spongebobs are doing ok and eribulin is working for you
Sorry, not sure re the triple neg...they will likely tell you if you ask them. Im oestrogen pos.
i was once informed that eribulin has been known to change the pos/neg status of the bc. Quite rare, but has happened...I guess because bc mutates often....maybe erib has some influence when that happens.
i had fantastic results.....for a while, whereas others may just get a few months out of it.
very best wishes tho for. A great responsexx
oh, and lulu, look on the triple neg threads too...there are plenty ladies, same. As yourselfxx
Hi Lulu, sounds very impressive....I must admit, ive never envied you, your care system...but recently that has changed as the insurance companies seem to allow you even expensive drugs..if you need them....we are over regulated...so Ibrance is off the table for mets ladies...which feels very unfair xx
i'm from Taiwan originally. I call Houston TX home for the past 40 years. We r lucky to have one of the best cancer hospitals, MD Anderson here. It's a big hospital, like people always say, everything is big in TX.
System and facility are good here. But I did not see any patient support Grp for active eribulin patients.
Does any one in the grp have triple negative cell? My BC 20 years ago was hormone positive. There were not much targeted treatment then. I had the traditional modified double mastectomy, followed by 6 courses of chemo using a combination meds called F.A.C.. My cancer came back not hormone sensitive.
I'm lucky to have 20 good years cancer free. I traveled to London several times. Like friendly British people, Downton Abbey and most of BBC shows. Can not wait to get back to my happier cruising drinking and dancing days.
yes, good. Luck with Eribuln, you have had a good run of bc free years havent you? Such a shock for youxx
i had taxotere in 2001 and I credit that with giving me much more time. I have found Eribulin a very easy going experience and do read back over the posts( if you have the time and patience) as there are suggesteions /solutions for most side effects that might come up....however, you may not get any.
beware week three....I think everyone has found they get ratty in week three.....i certainly have, but recently not so much...there is a query over how long I will remain on it now.xx
when you say 'over the pond' where are you from/based then?
withasmile...what an adorable puss! Do he and the horse get along?
another wet morning here. Sammy cat is asking to have his tummy tickled- with a smile on his face!
a warm welcome to the club nobody wants to join!
20 clear years is great, I'm 26 years since first diagnosis but have had recurrences all along the way...but we're still here eh?!
You'll find Eribulin a much easier regime than Taxol, and we're all here for you.
Moijan is the s/e go-to as she's been on it longer than all of us and is a wealth of knowledge.
Hoping your first treatment goes smoothly next Wednesday.
Sending warmest wishes accross the pond
I just registered after reading all the active discussions on line.
I had BC 20 yr ago. Had surgery, double mastectomy, tram and chemo. I thought I've learned my life lesson and will live happily ever. But cancer cells came back last year. Dr declared it a stage iv triple negative BC. It started with bad shoulder and back pain. I thought I had frozen shoulders. What a fool, you will think I should know better being an old timer and the 20 years of follow up.
I had radiation and 6 months taxol so far. It started miraculously, tumor mostly melted and pain level under control. But then it lost effectively a month ago. A new bump started. I'm offered eribulin today. Will do new scans and start eribulin next Wednesday. I'm so glad to see all you brave girls actively chatting your experiences from other side of the pond.
I was doing Ok with Taxol, side effect wise. I shaved all my hair b/4 treatment started and of course lost it all after 2nd treatment anyway. Having no hair makes my life easier in a way. Since I don't have to color or even to wash it. I wear hat, head wrap, wig and pretty earrings when I go out. Most people don't notice any differences. Maybe because I change my styles often b/4. But losing all my eyebrows is kind of sad. I'm glad to see Takethatfan tattooed hers with good results.
Any way, im happy that I found a Grp for eribulin ladies.
enjoy your new retired status Helen,
this cancer has led us all down somewhat unplanned and unexpected paths hasn't it?!
Sending you love and hoping the sunshine is brighter in IOW than Dorset
Hi fellow Spongebobbers
Have onc appointment tomorrow with results of a whole body MRI to look forward to.......I am hoping that everything is ok and I can continue with eribulin (due to start cycle 6 on Thursday). Had some pain in my right hip where there are no bone mets but had the MRI to have another look at the bone mets as haven't had a whole body scan since Dec 2012.
What's happening with you Moijan? Are you staying on eribulin? I hope something that's kind to you is sorted out for you as soon as possible xx
Hope everyone is coping with their treatment. I am now officially retired! At 49! Not quite what I envisaged but determined to make the most of life
Take care lovely ladies,
Hi Nicky, I too think the hairband idea is a good one.
i havent got engh of my own hait just now, a bit like a downy chck, however, I think I mentioned Heathers Hair before....i have a nice hairpeice on a headband and wear it under an elasticatd headscarf....it looks realish and is so much cooler than one of my wigs.
heathers hair are brilliant and charge just £5 for postage.Moijanx
Hi ladies. I'm half way through cycle 3, second dose (day 8) should be next week, bloods allowing. My wbc and neuts were getting hammered so I'm now having the filgrastim injections which have helped with the last cycle. I felt very fatigued after the day 1 dose this week but we had just got back from 5 days in the Italian Lakes so I had been doing a huge amount of walking so maybe it's not surprising I felt like this. I just wants to add a couple of things. One, I've stopped taking the steroids completely (I can't remember who said they'd be I tests to hear how I got on, sorry) and take an anti sickness tablet if I need it, which is only about once. Also my hair has thinned a lot, probably at least 50%, and mainly on the top but, as I had very thick hair beforehand I still have quite a bit at the back. This is despite having the cold cap so, at some point, I may ditch the cold cap and hope what I still have got will remain. Anyway, the second things ws going to say was that I also have too much hair to wear a wig but need to cover the crown. I have found some great soft hairbands in Claire's Accessories which are very wide and in a number of colours, really comfortable to wear and look good but hide the thin bits. They maybe worth a look if you think they'd work for you plus I have bought all of mine when they have a special offer on so it's often BOGOF time! In fact my son in law said I should wear them all the time anyway as they look so good - bless him!
Signing off for now on a sunny start to the weekend.
Hi a Moijan
love the little poem on the 20th may
and the witty Gatwick (I wish)
keep them coming
i am I am off to watch the immortal life of Henrietta lacks my friend got it on memory stick last week for me
if you have not read the book or heard about her it is worth the read or look her up
lovely pictures beautiful skies and the seals are also enjoying themselves you are an inspiration going on all these trips were do you get the energy
I keep putting off going away as I feel the need to be close to my children and grandchildren perhaps it is time I did something else
how is your new treatments going? Hope not to taxing on you after eribulin
probally the stress we were all under working for NHS?
i decided they had had enough of my life
that hair topper sounds good but I have none left to clip it on so hit a full one with less hair in not to bad for heat but never the less I soon whip it off once back from being out and about
not been on my bike for a while or been swimming perhaps now I will get to feel better after losing mam sorting will and selling her property getting this diagnosis falling out with my sister and getting shingles I may start to feel a bit more like doing things (not sure if I dare go swimming with no hair )
perhaps if I get a break from chemo it may be worth trying tattooed eyebrows as mine have never really grown back from previous chemo's does it hurt having them done
not seeing onc till August time so I will ask him need to see him to see if the one trying to grow through skin can be removed surgically as it is only small now
At last we had a bit of rain last night not a lot but the paths are wet this morning and I did hear it for a short while in the night
i see we have some newbies sorry to say but BiG CYBBER HUGS to you all
and long may we survive
have a lovely weekend end
My week off and as long has the tiredness does not over come me i am raring to go
i too retired on ill health grounds from the NHS......not saying how many years.,...need some secrets! But im really astounded to find out just how many of us ex nhs ladies there are....and I guess we may have some things in common which might had made us more prone to the bc!
anyway, I went back after retiing on health grounds! But they were then doing twice as much in half the time an puttinfg data on in their own time...due to pressure....shows how dedicated we all were/are...- and I decided it wasnt for me....ethically - couldn't spend the time I felt was req to do the job properly.
best wishes to everyone
sorry to hear you've been so down with shingles and the hot weather.
I was advised not to have my brows tattoed whilst on chemo as the chemo impairs healing, and any reputable beautician will ask you to get written consent from your onco.
They should grow back once you finish chemo, mine always have albeit a bit sparser!
just reporting in been bad with shingles pain and very down I am now out of isolation for chemo and just finished cycle 5 1 more cycle and then ct scan so will know if it is killing the ones in my liver.
i managed to get back to Morley last week for my new wig. All my hair gone no brows no lashes so I needed the new wig. Thought about having brows tattooed on any one done this? Or should I just stick to my Clinique wax pencil?
We have had no rain for months now I have 6 large water butts now all empty
wish we had some thunder storms just to cool us down a bit it keeps blowing out to sea so misses us had it comes down the coast been to hot for me i fact somehow managed to get top of head burnt last week and apart from walking dogs with wig on I have been sat on garden swing under canopy reading most days.
Hope you are all keeping as well had expected every one says how well I look 👀 even though I do not always feel it the tiredness is the worst had it just comes over when you do not want it too.
Helen have you been to wedding yet best thing you can do is retire. I retired on ill health after 20 years working for NHS now I see them all moaning every week when I go
my cancer nurse coming next week not seen her for a couple of months due to getting shingles between her visits I Told her not to come
Wishing you all well
Happy 1st of June ladies!
Another month turned on the calendar.
Wishing you all kind chemo, smooth treatments, easy blood tests, nice nurses. . .and great scan results.
Thankyou everyone for being here and helping me through my own battle