You look great Marnster!
Yes, I bet you are a wow on the beach!
When does your rads start?
Have you got some exciting things lined up before your rads?
i just want you to know what wonderful weather we are having… really so much hotter and barmy than Oz xx ( and if you believe that… )
Seriously, it is lovely to hear how you are doing and to see you in the flesh!
Hugs,
moijanxx
Yes, quite agree about the alcohol …, I was only joking… because alcohol also irritates the bladder and of course is a bc risk too xxx Withasmile didn’t ever say g+t… just my little joke… tho I will have the very odd proseco if celebrating( rarely) as I refuse to allow bc to control my lifexx
Re the hair… yes hair loss was one of the very worst aspects of my brush with bc xx
Helen, sorry about you losing yours too, just when you really need it! Xx
Hugs everyone, just had an hour’s sleep before dinner and going out xx
Moijanxx
Hhhmph
Hi Withasmile, was wondering how you are? Hope you feel ok?
Kay, i definitely get less reflux since cutting out tomatoes…a bit a shame as they are so good for us.
this virus is really weird…have been getting nasal pains doen one side and lots of runny nose, sneezing, and eyes ache…for about two weeks now! And its not really better! It feels much improved after a cup of coffee, for a while, later it comes back. And sonetimes, I cough up stuff from my throat, so there is definitely bacteria, but not a sure throat…in the past, these symptoms have been part of cellulitis in my arm, but just now my arm is fine!
very puzzling!
Anyway, Kay, you are doing just fine, by the sound of it. And hopefully you wont get nutrapaeninc…im lucky with the filgrastim…years ago on Taxol, it happened to me a few times, and the onc at the time wouldnt give it to me, but actually its more cost effective to give it, rather than the nhs pay more money for say a weeks hospital stay! Try and keep away from crowds, etc, I also use first defence…its only because of a lapse in taking that…that I got this virus!
moijanxx
Hi all , saw oncologist yesterday for scan results, EC chemo had not worked on lung pleura mets, pain increasing so next step is eribulin. I did 3 cycles of EC chemo , previously had capecitabine, gem / carbo , taxol and FEC for primary.
I now now have a spot showing on the 5 th rib too.
Any advice on eribulin ? Don’t know if I am spelling it correctly.
I am on morphinefor for lung pain etc so really hoping this chemo will work. I used the cold cap for EC which worked well on the hair. Any advice tips etc would be gratefully recieved. I know it only takes 5 mins for infuse? Anyone done the cold cap? , if so how long do you have to ear it for after treatment.
The EC chemo floored me so hoping this will be a bit gentler, I would like my life back please !!
Thanks all xx
Hi Sarah
Welcome. My hospital were unwilling for cold cap for Eribulin…but you will lose some hair if you don’t
The infusion is about 10 mins and unproblematic. Cold cap extends it to about 90 mins in all
Have a scrol through to see the side effects, but after 14 cycles I don’t get many …just get ratty in week three
Hugs and best of luck, it’s a doable and very good chemo
moijanx
Yes thank you. Xx how are you?xx
Hi all I am starting eribulin tomorrow , will be using the cold cap to see how it goes. I am hoping I am able to regain some energy ?? And start doing thing , I am in a lot of pain with the lung pleura Mets and in morphine at the momment . Good luck all xx
Yes Pussy, just had my first Erib of I think 15th cycle… am feeling much better thank you
Sarah very best of luck tomorrow, take heart both of you this chemo is somewhat miraculous… so expect great results over time.
I was only on the drip for 15 mins today… such a lovely brief episode, needle in first time.
Have a great dayxx
Hi I had my first eribulin yesterday , took 3 attempts to get cannula in . Chemo itself was ok nice and short. I did attempt the cold cap but with the pain I am getting in my lung too the pain of the cold cap was all too much , and I would have had to keep it on for 90 minutes after chemo , all too much ! Oh well will see if hair stays or goes . Xx
Hello moijan
Someone on the threads can’t remember who …doh …said that eating a lot of pasta type food before helps them to find the vein easier …probably makes them swell .
I don’t know the reason but might help if you like pasta ! I always put a hot water bottle on the veins first and drink loads of fluid too. Otherwise I end up like a pin cushion for my monthly blood tests !!
Xxx
Hiya moijan
I’m like Billy no mates on bone Mets at moment …it’s so quiet …so I’m hijacking this one …ha ha …macaroni cheese is my favourite …luv it …hence the reason I’m such a happy person with the trupyofan then !
No chemo so no constipation probs …cup a coffee and a adcal tablet first thing in the morning and 2pm choc does the trick.
?
xx
Well you sound very fit and happy on it tooxxx
Bousy XX
Fingers crossed xx Cape stopped working for me too
Hugs Moijan
Hi ladies,
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!
Moijan???
Hi Marnster, thank you for feeding back re treatment plan. Have you asked about filgrastim? Might save your getting nutrapaenic. Xx
Re travel plans… yes. What a pain for you… you can get cover but it can get expensive… also onchas to agree… or it invalidates the policy.
I have the exact same problem in reverse to you! Yes we do have reciprocal healthcare, you’d need o double check what levelyou would get… I think mine would be purely public hospls at your end.
The only fly in the ointment is that were you to become ill on that long flight, thy would put you down somewhere en route and that’s where big bucks might come in… sorry if that sounds negative but I have been looking into it myself
And if you needed medivac plane home … Thas very costly xx
Anyway let us know how things go Marnsterxx best of lck with the new chemo
Moijan???
Hi all,
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 ?
Thanks!
Thank you ! My voice went up several octaves yesterday . I sounded like a little girl, my daughter thought I was copying her. At least she thought it was funny. 
today I’m just croaky but think I sound more like me.
I do hope my hair hangs on in there . It’s still really short and a bit mad looking in a Mr Whippy sort of way, but I quite like it.
xx
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.
Warmest regards
Shirley (Atterbury)
Hi Spudgirl
My guess is that you are having reflux, you may not have any other symptoms, but reflux can cause loads of mucus in the theist and affect the vocal cords. Odd as it sounds, try to sleep on your left side as this puts less pressure on a valve which keeps the acid in check… also take some milk to bed with you … in case you need it.
Good luck
Moijan
