Thank you for your message. My bloods were low again after the first treatment cycle 2, so it was put back a week. They are going to try again this week coming to get cycle 2 completed. I was on Paxitacol, but had to change because of side effects and low bloods etc, which when I had my CT scan it showed that things were getting worse in my liver. Since I was first diagnosed in 2008 I have had five different chemos, this could be causing a problem so my oncologist tells me. We shall see, I have another CT scan on May 2nd.
Truffle, I think the hoearseness ifs refux...the acid causes loads of mucky mucus and also affects vocal chords...mine is less so just now as im tailoring my diet to try and stop it...tomatoes are the worstxx
Hi Nicky, my original pre med and follow up take home meds was an antiemetic. However, it made. Me jittery so i dont have anything now at all and i dont get sick, thank goodnessxx
glad cycle one is done- yes, I was totally exhausted after first cycle I wonder if a lot of it is the build-up of anxiety and trepidation, as cycle two definitely was less exhausting. Sleep sleep and sleep and you'll feel lots better!
I wish you well for Thursday
nice to meet you!
wishing you well with paxitaxol, I know the taxols are sometimes difficult
Oh just reading posts , I also have hoarse voice , and mucous, I was thinking it may be the disease , but reading all your posts ,it seems common and asociated with the chemo , I am on paxitaxol once a week .
thank you for your posts xxx
Hi ladies and thanks for the welcome.
I had my first dose yesterday and then the next has to be after the Easter break, so 10 days gap for me. Hoping the bloods will be OK for that one and I don't get any nasty side effects in between but expect they might occur after the second part is given. I did use the cold cap yesterday, luckily in a very sunny warm chemo ward so it wasn't as head and bone chilling as I remember. Some slight nausea feeling today, but I think that's just me as I seem to suffer with it more than most, just dose up when needed on anti sickness pills. A quick question, is everyone on steroids for this chemo? I had a pre treatment dose and then 3 days, of a smaller dose, to take afterwards. Just wondering.
Hi all just had cycle one of eribulin. Mostly feel absolutely shattered , I could sleep for England. Appetite varies trying to eat properly but just not keen on full meals tend to be eating omelettes! mostly and cheese on toast. Hair is gaining in strands are falling out but no one else would notice, wait and see what happens. Start cycle 2 on Thursday. Would just like more energy to start getting out and about more .
Hope weather is kind to you all this weekend xx
i hope your new treatment is ok if you have started it
wishing you luck and keep us all informed
You said you might be joining us, sorry that you are and that you have missed out on the trial. This disease is so confusing and you know that I have been down the same road as you with being HER2 negative on first diagnosis, changing 2 years later to HER2+, having herceptin & kadcyla and then being told that my liver mets aren't HER2+ in January!!!! Confused? I certainly am!
Re cold cap - I am still ok with my hair at the moment after 4 weeks since it started to come out, only strands not large clumps. If you saw me (which I hope we can meet up with Hants girls soon) you probably wouldn't notice too much of a difference, it's thinned definitely but I feel quite ok with it.
My treatment yesterday took 50 minutes altogether, quickest so far, saline flush, 7 minute infusion of eribulin, another saline flush. And that included 5 minutes of waiting for my steroids to come up from pharmacy! I am still going with your tip from docetaxol of sucking ice cubes during treatment and it has worked, I don't have any mouth ulcers. Metallic taste / taste of absolutely nothing seems to go on with me for first 10 days and then taste returns around day 11ish. I take metachlopromide as & when but I don't really feel any nausea much. Getting a bit of pain in my right hip currently & using my walking stick sometimes - weird as my bone mets are in the left hip! As a treatment it doesn't seem as bad as others and certainly better than docetaxol. I do have a CT on the 12th so fingers crossed it is zapping the liver mets to oblivion.
Will text you later. Welcome to Spongebob Club!
How is everyone feeling today? Hope you are all dong ok & enjoying the lovely sunshine. I had a good time last weekend on the hen weekend and managed a few sneaky champagnes....very naughty!
Love Helen x
i can agree with the others this has not been to bad for me though I have just had 1st of cycle 3
i suffered very bad constipation and indigestion 2 days after chemo but I upped my lansoprozole and cut out my Cadbury cream egg that had taken the severity of the indigestion off ,but I still get it but only mild the constipation was sorted with prune juice figs prunes anfdbflax seed all mixed with kale and other bits my daughter makes me with her nutri bullet I get a croaky voice that comes and goes in the early days after chemo and I get fatigue of varying degrees which has usually been at the end of the cycle (2nd dose) I have lost the hair on the top of my head but not round the sides just like my husbands is but the letrozole I was on had coursed thinning of my hair at the top so I presume that is why I look like max wall I did cut it short and I have not seemed to have lost any since cycle 1
as anyone heard from Moijan I hope she is ok she has been on it the longest I think
hugs to all
I am not on Eribulin (yet!!) but I just wanted to wish you luck Nicky and positive results for you all on this chemo.
Mojan are you ok? I have missed you posting for a few days.
Hopefully all of you will enjoy the sunny weekend that has been promised.
Well, I'm about to join you! After many weeks of tests and loads of extra appointments it has been decided I should start Eribulin. I was due to go on a trial at The Marsden but my bloods were a bit low for the exacting tests they do and as it was a phase I trial it was decided I should have a treatment that is more tried and tested. All of this may sound odd to you who know I have been on HER2 treatments but some of the tests have been to establish my HER2 status as the drugs I was having haven't held my liver mets, well one of my liver mets, in check. As always I have been highly hormone positive alongside any changes in my HER2 status. All very confusing and it seems to take an age to verify these things.
I have obviously read this thread many times but just wondering if you long term spongebobs can give me some top tips. For my sins I am going to use the cold cap (I know, I know, it will mean a very long and cold hospital visit each time but I'm not ready to lose my hair again just yet - that may of course change once I get the ice headache!). Other than that anything you have found useful or noticed each cycle? I know Moijan listed a few things a while ago but anything anyone wants to add would be useful not just for me but for any new spongebobs as well.
Thanks and let's see how it goes for me, eeek.
Sorry to hear you had a hospital stay. I had to drop back 20% but gradually had the dose increased to full, and found it ok for the next seven cycles.
I hope it goes ok for you from now onwards
I have started Eribulin but ended up in hospital after cycle 1 and had cycle 2 cancelled as my bloods are very low. I lost my hair after the first cycle, very quickly I thought. But I haven't noticed it affecting my voice. I think I will not be on Eribulin for long as I have already had it reduced by 20%.
I hope it goes well for you.
i can't remember being hoarse on Eribulin but I probably had a bit of a flu/cold feeling after a dose that could be similar. I definitely lost quite a bit of hair after my first round of Eribulin. My hair had grown back to about 3-4 inches long and began coming out in some reasonably large chunks, particularly on the top of my head. It was noticeable when I brushed or washed my hair. It didn't come out as quickly as when I was on AC and Taxol. And it wasn't hugely noticeable to other people but I decided to shave it back again. Now I question whether I should have done that because it didn't fall out as much after the first round! However I don't know if that's because then it was so short, the loss wasn't as noticeable and I was no longer brushing it.
It was definititely more of a thiining than a balding so see how you go with looking after it. Hopefully you might find it is just this initial fall and then it might slow down.
yes, I always have a hoarse voice and sometimes it disappears altogether for the first few days...the chemo dries out mucus. I find sipping warm water helps. I call it my Chemo Croak.
My hair thinned, I cut it short and it stabilised, and then began to grow back again.
Hope this helps
sorry, I'm very sporadic on here. I have a couple of questions please.
i started cycle 2 of Eribulin yesterday and today I have woken up with a hoarse voice and sometimes it disappears altogether. Anyone else had this?
Secondly, I was previously on Carboplatin for three cycles but it didn't work, which is the reason for the change, however with Carbo, my hair started growing back. This morning I had several hairs in the sink and I seem to be leaving a little trail as I go. Does it normally just thin out, or is it time to dust off the hats and scarves again ready for full loss ?
your new treatment plan sounds interesting.
I've had blood transfusions- after everything else we've had they're easy peasy!
Sorry your travel plans have been scuppered, is there anywhere in particular in UK you wanted to visit? If you can't get here we'll all have to send you pics
Enjoy your appointment-free week, such a rarity these days!
sorry to hear about your latest hospital stay and breathing problems, it must be such a lot for you to bear.
It would be bad enough for anyone without the chemo on top.
I know it all passes in time but that doesn't help much when you're stuck in the middle of it.
I can understand completely re anxiety about getting ready and out for your line flush- I never feel anxious about the activity, just whether I'm going to have enough energy to get there and back again. Daft isn't it?
Sending you a huge hug and kindest thoughts
sounds as if youre having a tough time just now..xx
sorry to hear about that it must be very scary when you feel you cant breathe. Hopefully they are keeping an eye on you.Xx
ask the pharmacist if its ok to try 'first defence' , its only oils, but clots up in the nose and catches bugs when they first start growing....it could help you avoid getting another chest infectionxx
also drink as much fluids as you can.
anyway, very best of luckXx And lots of hugs.
sorry for the radio silence again. Unfortunately I ended up in hospital again for a week with a chest infection. The shortness of breath and limited movement just hadn't improved. I got home sat. I'm still so weak and barely move. Struggling with my breathing but my sats have been fine. They have provided me with oxygen at home which I seem to be relying on quite a bit. Still managed to have my chemo so that was a relief. Just feel so rotten and hate the fact I can't do a thing without getting out of breath and my heart rate going mad. Spent all day in bed today and only managed to get downstairs around 6.30pm because my aunt came over. Got to go to the hospital tomorrow for a line flush and I feel anxious about getting ready and out for it. Took me 10 mins just to climb up the stairs again and that's with oxygen! I just want this breathlessness and weakness to pass. Have given in to a commode as don't have a downstairs loo and also have a chair for the bathroom. Just feel like such an invalid:( hate relying on people to do things for me and hate how crappy I'm feeling. On so much medication too so I think that is contributing to my fatigue. They have upped my Lorazepam - apparently it helps with breathing and also I seem to be suffering with a lot of anxiety!
So sorry for the self absorbed post. I do hope you all are ok.
sending lots of love and hugs xxx
Just checking in to say hi everyone and hope you are all doing well.
Appointment with my medical oncologist went ok last week. No huge surprises about next steps. I am starting on a combination of carboplatin and gemcitabine from next Tuesday. It has a similar cycle as Eribulin. Day 1 you get both drugs, Day 8 you just get gemcitabine, Day 15 is free and then you start all over again.
Apparently it can really knock your white and red blood counts around and it seems to be quite common to need to have regular blood transfusions. I've never had one before so that's something new to look forward to!
My doctor was very negative about doing any travel, especially overseas, because of the risks of getting sick and having no travel insurance. So that was a bit disappointing, but I understand what she was saying. So my plans to go to Spain and Portugal, New York, San Francisco, etc. may be on hold for a while unless I decide to be Captain Risky and say 'to hell with it'.
So I am just going to plan a bunch of little holidays around Australia instead in those two weeks I get between Day 8 and Day 1! Or maybe I should come over to the UK for a holiday at some stage because I'm pretty sure we have some kind of reciprocal health arrangements between our Medicare and your NHS?
Oh well, lots of planning to do! I actually have no medical appointments this week for the first time in ages. Looking forward to having a bit of time to organise my house after moving back into it a few weeks ago and looking after myself. Have been to the gym this morning and hoping to establish that as a regular routine before I get too tired and bogged down in the chemo cycle.
Take care everyone!
Hi withasmile...have pmd you re teethxx
sorry about the toothy graphic..,.I had no ideaxx
hi Moijan and Marnster
sorry to hear about your fatigue Moijan, if its any consolation I've had it too. . .absolutely exhausted this week.
How was your onco appointment Marnster?
I had to go to the dentsit with a troubesome tooth and we've decided its best taken out. I'm feeling sorry for myself already and the appointment isn't until next Tuesday. Tooth extraction most DEFINITELY wipes the smile clean off my face!
I'm going back to bed now to catch up on zzzzzs.
Speak soon, wishing everyone a happy weekend- Helen looks all set to have a riot!
hi Helen (aka Spongebobchemopants?)
so pleased to hear your hair is hanging in there, its amazing how much comes and and yet still leaves enough to look good. We spend years trying to tame thick hair, so now we can reap the rewards thick hair brings!
Enjoy the hen w.e and enjoy that cocktail
Morning lovely ladies
Sorry I haven't posted for ages but have been reading all your posts everyday. I'm hoping that eribulin is being kind to everyone - I seem to be pretty ok most of the time. It's the chemo free week this week & am going on a hen weekend in London tomorrow, hoping for a sneaky cocktail or glass of prosecco! Moijan - hope you've recovered from yours!
One of the games over the weekend, although I think it will be quite sophisticated (afternoon tea & cocktails), is for the hen to guess the owner of various pairs of pants! We have had to customise a pair & see if the bride can guess the owner from the clues - I have sewn a Spongebob patch on mine!!!
My hair is still hanging in there ladies - the last 3 weeks I've had plenty come out but it was very thick to start with and has just thinned so far. I'm determined to go to my friend's wedding with my own hair, fingers crossed.
Can I just say thank you to all of you. Reading your posts definitely helps me get through the treatment of this b*****y disease. You are all amazing and inspirational.
Big ((((cyber)))) hugs, Helen x
funnily enough...this week I too, got kind of overrun with tiredness and very tetchy.....its only week 2
( but am skipping chemo this week and having my next cycle/ week 1 at the usual time...)
anyway, I went to a long 'celebration' on Tuesday and had some proseco, ..i knew the bumf says avoid alcohol, but I fancied a glass! I only had one glass.
Tuesday evenng it was hot and my head felt as if it was swelling up under my wig....I felt awful all day Wednesday, so i went to bed at 9pm..I also drank copious amounts of pure whole apple juice.
At around luchtime today I suddenly felt ok! Cant explain it....other than i went to the loo a lot late yesterday and this morning....so maybe I needed to get rid of some toxins....who knows?
i do hope you feel a bit better Kay, and Marnster, am still thinkiing of you too xx
Withasmile is likely smiling all along!
thank you for your replies I certainly will listen to my body I am past worrying about anything else like housework etc will leave that to him indoors
I never had the energy to do anything apart from sticking vick on my nostrils to protect myself from anyone turning up with any germs by the time I had got up walked through to room I was tired again
i can cope with the tiredness I have to day as I can do most things I want to and I know I will pick up now till Wednesday when I start cycle 3
Marnster I hope you get something easy and all goes well with appointment
Withasmile make the most of your time off enjoy it while you can
Hope everyone else is doing ok
cyber hugs to all
hi Kay and Marnster,
I found the tiredness/fatigue came at random times rather than having a set pattern. Just woke up some days and WHAM it was there and was unable to do much except sleep.
I found it best to accept it and do what my bod needed and then it was over and I was back to chemo-normal. . .I bought some new pyjamas which somehow made sleeping more fun!
I have a scan at the beginning of May and we'll decide treatment depending on the results. I'm enjoying the break and completely agree with Marnster about 'normal'.
Hugs and smiles to everyone xx
When I was on Eribulin, I felt relatively normal most of the time but then I would get very tired as you described and have to sleep for a long time or find myself needing a long daytime nap. I think it all catches up with you. Be kind to yourself and your body. Don't fight it if your body is telling you to rest.
Now that I've been off any chemo for almost two months, I know that what I had come to accept as feeling 'normal' was not normal. I have so much more energy and that background feeling of almost mild flu like symptoms is no longer hanging around.
Of course, I'm off to see my medical oncologist this morning to discuss the next chemo for me to try so this good feeling won't probably be around for much longer!
Take it easy on yourself. Listen to your body and get the rest you need.
i am Doing ok apart from the fact at the end of each cycle the fatigued and exhaustion that has come over me is a bit disabilitating fir couple of days can not think of right word or spelling today As I said in previous post slept for 12 hours I do not know when I ever slept that long perhaps when I was a teenager but the rest of the time I am ok now got indigestion sorted and the other it is my week off starting tomorrow so today though still feel very tired it is not has bad as Saturday evening when it came on then Sunday and Monday so perhaps that will be happening at the end of all cycles. Has it effected you in that way? Or anyone else that is on it
but over all it is a bit like the paclataxol I was on 2014/2015 but as long as it does the trick I can put up with a couple of days of exhaustion
hope you are still ok
and withasmile how are the blood clots hope injections are working when you going back on eribulin
Thanks, I hope so too. I just want oncologist to find something to work for me after cape didn't work.
Hi Kay, hope things are going well with you?
this chemo seems quite mild....how are you finding it?
you are doing so well on the letrozole and avoided chemo for a long time I hope it continues for you
it is nice you pop in now and again
good luck with your scan let's hope it works for you and buys you more time before you start eribulin
i never tried cold cap after reading about it think we go through enough with out adding to it
I have just finished my 2nd cycle and I have been so tired I actually slept for 12 hours from Saturday night till I woke on Sunday then was tired when I went to my sons for buffet tea so only stayed couple if hours came home went to bed feel shattered today no energy just want to sleep but can't. Hope I feel better tomorrow I think after I finished cycle 1 I had a day were I collapsed with tiredness on settee but this been 2 days my week off starting Wednesday so should pick up. Before you have chemo drink lots of fluid it helps plump the veins
not sure on pasta because that is not really of nutritional value is it? I like pasta though but can not see how it helps veins
glad it went ok sarah66 hope helen is doing ok
hugs to all
yay! Number One done.
By the time I got to Eribulin I'd had three other chemos and my veins were non-existant so I had a portacath fitted. . . its made life a lot easier - no worries at all finding veins for bloods/chemo/CT scans - and although I don't really 'feel' it there, it does look and seem a bit alien.
Sorry the cold cap was a bit much too.
Have an easy w.e
Thanks for that Carolyn xx Pasta has an antidepressant in it...,tryptofan, youd need a lot of it...but i do lurve macaroni cheese to bits! The hot water bottle is a gem.....
hope you are doing well? I was advising soneone to eat chocolate for constipation.. and i then thought..well Carolyn never complains of it, so maybe that whyxxx