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Chemo Buddy Needed - Anyone Currently on Eribulin?

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

i am sure withasmile will not mind she will be honoured I am sure 

it is nice to see you are feeling a little better 

I had something similar last week but it came to nothing after a couple of days I seemed OK off to onc Monday at 2 about my indigestion episodes on both the Fridays after chemo I hope he is not going to take me off this drug I only asked for some advice from the head chemo specialist nurse and she said I had to discuss it with the onc. I feel sure it is to do with eating lots of fruit and veg trying to get my bowels to work after being constipated from the chemo so the wind is trapped. 

I got rooibos green with manuka honey and one called red bush you did say they helped with the Bowles so I will let you know also I got some flaxoil capsules so see if that works this Wednesday if I can still go ahead 

 

have a nice weekend enjoy your week off mine as been lovely had youngest grandchild yesterday all day and I was fine so that is good hope it is like that every week off

 

big 🤗 hugs 

 

kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies,

 

survived day 8, relatively unscathed. Still feeling virusey, but have heard its going round!

 

hope everyone else is ticketyboo!

 

moijanxx😎

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile, pmd you earlier xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Helen,

 

lovely to hear from you- yes it's been really warm here in Dorset too- like a summers day.

 

Its good your SEs haven't been too bad, I have the fingers/toes too.

 

The Easter break sounds great I bet you're really looking forward to it- and all those muscles in lycra (be still my beating heart!)

 

I hope your 'rest week' goes well, take good care of yourself

xx

 

 

 

 

 

helen44
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Afternoon lovely ladies

Here's hoping everyone is doing ok today and getting some sunshine -it's 15 degrees here on the Isle of Wight today!!! Positively tropical!
That was a shock for you Withasmile - I hope you aren't overdoing things and the filigram injection is helping to reduce the clots.
It's Day 15 for me and so far so good with the old side effects, bit of numbness in fingers and toes and some nausea only.
I have been very naughty and booked 5 days@ Easter in Belgium watching men in lycra! I absolutely love following professional mens cycling and have lots of photos of me with some very nice young men! Amazing where no hair and a headscarf will get you!
Just off for a walk in the sunshine.
Sending big hugs to you all.
Take care of yourselves, love Helen x
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Have given you a hug to pass on xx
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Was wondering if you'd noticed xx

A lovely horse, would love to have cuddled himxx

Give him a cuddle from me xx

Thank you for your good wishes and you have a lovely day xx
Moijan😎
withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan,

hope your treatment goes smoothly, and take care of that virus.

 

Bruce says he's very proud you've used his smile for your avatar (he's going to get even more big headed than he is already)

 

As a breed of horse, he's an Irish cob (a cob basically being a horses body on shorter legs) so now he's going to be known as an honorary Spongecob!!

 

xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Abney,

thanks for sharing that, it really helps knowing others are managing it ok

 

It seems like we're all wearing our clots with pride!

 

Now I've got my head round it I'm ok- just another trial and tribulation, which I guess is the price we pay for staying alive.

 

Glad your second dose went well- I'm there with you on the jittery steroids and sleepy afterwards. Can't do without my afternoon Nana Naps!

 

This is a lovely group isn't it

xx

 

 

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hehehe smiling horse!

 

ebay 068.jpg

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Enjoy a few days rest Abney after your Erib.

Tomorrow is day 8, so I will then have a week off... the same week as you.

Thank you for all your support xxx
Abney
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Ladies

 

Moijan hope you are all ok for tomorrow my love. Sending lots of hugs and yes get a good rest tonight.

 

Withasmile I'm also in the same boat with the clots. I had a massive one on my lungs over Christmas so like Moijan I'm on the Fragmin (10,000) indefinitely. However seems to have done the trick as they couldn't see any more clots and the original one had disappeared. I did have a procedure to burst it too... wasn't fun!!! But I have taught myself how to inject my tummy- I was so squeamish at first but realised I had to woman up and do it! My husband was doing it previously but bless him he works late a lot so I thought I better just do it and it gives me freedom if I want to stay at my mums/sister I don't have to rely on anyone. I still hate having to do it but hey ho just another thing to add!!  But I'm sorry this has happened to you too Hun. Sending big hugs x

 

Had my second Eribulin treatment today and it was ok apart from me feeling sleepy after and a bit jittery from the steroids. A nap and a good lunch from my mama helped so hopefully will be ok. I like the fact I don't have to be chained for ages to the machine and we have cut the pre meds down so I'm out in an hour. I do hope it works and SE's arn't too bad. But I am encouraged by what you ladies have said and it's easier to cope with. Next week is my week off... let's see what this brings!!! 

 

This is such a lovely group. Thank you for welcoming me and hello to my fellow newbies too!! We all in it together!!! 

 

Sending lots outs of love and hugs...did someone mention fish and chips?!😂Oh I want some now!!! Xxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh dear, ive been a bit cheeky, lets see if Withasmile notices? Wonder what she will say xxx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

  • image.jpeg  Well, this may turn out a littlr blurry....might have to beg withasmile for another one xx
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay, buddy.

 

My temp is currently ok, technically,  I have a personal norm which is lower than the accepted norm, this week it has been at the accepted norm, and thats when I feel unwell..., I did ring the nurses to check my blood results which were all ok and passed by the doctors for me to have treatment tonorrow.....my guess is that Ive got a virus......well am resting up now.

 

was lying here, casually considering Withasmiles suggestion of changing my avatar to a purple bob, but you know what? I like her horse's smile even etter...so I might borrow that, ill have to see.

xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi All

Withasmile you enjoy your day out 

I have walked 6 miles with dog then went  to lunch with my husbands tia chi club £3 for 3 courses soup carvery desert and my neighbour paid so cost us nothing very nice 

Moijan I hope your temperature is coming down and you are feeling a little better 

 

i hope Helen 2nd dose went ok and she is now alongside me on her week off

 

i hope all others are managing ok please let us know how you are all getting on with the ERIBULIN 

 

cyber hugs to all

kay

 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi there everyone,

 

thanks Withasmile x

 

hope you get treated to lunch...seaside always makes me want fish and chips!

 

hugs, Moijanxx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Moijan, Marnster, Kay, Nicky08

lovely supportive messages, thank you all xx

 

I was a bit shocked but I've got my head round it now. Very aware of clots with 2ndaries but have no symptoms at all and I'm feeling so well. I was stacking hay before I left for the hospital!

 

Fragmin, high dose for the first month then maintenence dose...onc nurse says I'll probably stay on it.

 

I'm off to the seaside today. I just felt like seeing the ocean and having a walk in the rain, and hopefully get treated to lunch 😉

 

Kay and Helen I hope your rest week goes ok, you must be relieved not to be at the hospital today?

Moijan keep that temp in check, Marnster and Nicky08 look after yourselves...in fact everyone look after themselves really really well!

xx

 

nicky08
Community Champion

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmaile

What a shock but thank goodness it/they got picked up and you got immediate treatment. I had to have heparin injections after I had a mini stroke (TIA) back in 2013 - not necessarily caused by chemo but probably the atrial fibrillation I had at the time. I got fed up giving myself daily injections so asked to be put on one of the newer tablet form anti coagulants ie NOT warfarin which has too many blood tests for my liking! However, as Moijan has said, it seems to be down to your oncologist/cardiologist as to how long you may be on the blood thinners for. I have just been taken off mine for the first time in 4 years as Kadcyla is hammering my platelets so I don't need my blood to be any thinner at the moment!

Good luck to all spongebobs with your treatment.

Nicky x

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Wirhasmile,
What a shock for you!

I hate to say this actually, but I have been on fragmin injectiones for about three years now x I got my dvt's from being on Cape.... and am sure it was my inactivity wot did it... now the haematology cons says that I'm always going to need to do it---- for as long as I have chemo and that is apparently permanent. Just a wee gem here....cancer affects the blood.... a high percentage of people with a dvt,( forget the statistic... maybe 15%) find out they also have cancer! So all cancer sufferers are at risk of a dvt......... sorry folks if you knew this xxx

Withasmile, unsure how long you will be kept on heparin, some people seem to get taken off it after 6 months ..... so seems drs all have disagreements about itx

Have just drunk 2 litres of water as my temp went up a bit..... feeling ok... fingers crossed... have blood tests tomorrow anyway.... if I can stay out of a+ e overnight!

Yes, have been fairly happy..... live and hugs to the newbies... lots of chemo buddies now, yippee!

moijanxx 💤💤

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi withasmile

i am sorry about your news but hope you are feeling s little better now you are home 

I agree I had a blood clot the other year in my lung caused by tomoxifen /and cancer I was swimming 20 lengths of our local pool walking 6 miles a day was only s little breathless if I walked with my daughter and talked at the same time I injected for 6 months and it is easier doing it yourself rather than waiting for the jab by the nurse

i hope all goes well take it steady

kay

Marnster
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh gosh Withasmile, that must've been quite a shock! Had you had any symptoms to indicate it?

 

Just after I was diagnosed with secondaries in my lungs last year I flew to Hong Kong to visit my brother. I was in a lot of pain for a couple of days there where every deep intake of breath was accompanied by a sharp pain in the ribs. I figured it was related to the lung mets. When I got back from Hong Kong and mentioned it to my oncologist she said the pain I was describing sounded like I'd had a blood clot in my lungs, most likely caused a deep vein thrombosis from flying. Fortunately the clot just went away by itself, but I am taking precautions when flying now, particularly for any long haul flights. It was a bit scary. 

 

Hope your needles are OK to administer and you're feeling better soon. 

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

well, some days are more surprising than others!

 

My CT scan was going very smoothly when the radiologist came back into the room to say he'd just checked the scan to make sure it was clear. . .and it showed I had a very large blood clot in my right lung and some more in my legs.

 

An oncology nurse was summoned to escort me to the ward to have a clot-busting jab, and I've come home with a pack of ready filled syringes and a sharps bin, so I can inject myself every morning in my tummy. I'd rather do it myself than hang about waiting for the district nurse.

 

I must admit it wiped the smile off my face- all this hooha with the cancer and I could've dropped dead even sooner!

 

Going to have a nice calming cuppa now and feel even MORE grateful to be alive

xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi 

now I have to go see onc regarding this indigestion on Monday ☹️

 

Kay

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Optimissy64

ooooh that smell is worth everything isn't it, just being around horses is wonderful  xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hi Spudgirl,

really hoping for you that Eribulin is the drug thats going to work.

 

I haven't had any nausea with Erib and have found the SEs much easier than other chemos.

 

Good luck for Monday,

xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

what is rooibos tea? and we're would I buy it from I will try anything I have head chemo nurse practitioner ringing me later about my indigestion, my breast nurse came today so told her about it and is going to have  a word with them also what is the best day to start a laxative perhaps I am leaving it to long by waiting 2 days 

also looking rare side effects up with nurse this morning it also causes loss of body fluids so perhaps it is drying me out more than usual just mentioned if being constipated was causing indigestion as well 

 

you seem HAPPY today 

 

take care

cyber hugs

 

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Spudgirl

welcome not a nice place to be but I am also a newby just had my 1st cycle not been to bad but that fatigue is something to be aware of constipation indigestion from my point of view at this stage but all the ladies on here are very helpful and have helped me so knowing how  things have gone for others in advance have helped and emotionally as well 

I wish you well for Monday and hope it goes as well for you it has not been as bad as some and I have managed to walk the dog 6mile a day 2 days after chemo 

 

giid luck 

 

kay

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Ooh, twice bleeped for mainecoon now xx
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Helloooo Everyone

Welcome to the thread - am sure part of the attraction is the recent emphasis on swearing! Anyway welcome, have a seat and cuddle up for the ride xx

Just went to bed for an hour as felt 'fair puggled' as Oor Wullie would say( I'm not explaining- you'll have to ask Waffles if you want to know what it means!)

Yes, I looked up p- egged and I once got bleeped for saying I had had a Maine-**bleep**

Kay, I had a lot of probs with constipation, which can contribute to urine infections,- which I have also had too many of on Erib. I find water or Rooibos tea by the litre... I now make myself a measuring jug of tea often -esp on the chemo days and days after and ensure I drink about 2
Litres of fluids. Movacol did nothing for me! But each to his own favourite tipple

Am off to do the school run soon so will catch up with you all later xx

Spudgirl
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Ooh! Moijan and Carolyn52, just noticed you two are on this thread xxxx I'll go and see if I recognise any other names x
Spudgirl
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Helloooo!

 

I'd like to join this thread please.  I'm just about to start Eribulin on Monday 🙂

 

I'm Triple Neg.  Secondaries in neck, breastbone and lung.

 

Was diagnosed with secondaries end May 2016.

 

Had Docetaxol then Carboplatin, neither worked.  Hoping third time lucky with Eribulin 😉 

 

I'm hoping the SEs aren't too bad.  I didn't really have problems with the previous two chemos, apart from usual nausea, constipation, feeling a bit rubbish etc.  However I did end up in hospital after most sessions due to fever and/or neutropenia .

 

xxx 

Optimissy64
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks withasmile. So important to do things that we enjoy, isn't it? Will have a little ride when my Dexa results are back. A back-protector is a good idea. I can ask the stables for a steady old horse when the time comes, rather than the nice fast ones i used to ride on the Sunday afternoon "Kamakhazi ride" I used to go on - flat out gallops accross the fields. I think I'll give them a miss nowadays!!! 🙂 (But I still love the smell of a sweaty horse.)

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

WELL I NEVER Withasmile I certainly will be smiling when I put the washing out ha ha I will enlighten my neighbours and friends this afternoon 

Tiko gone to vets for booster with husband so hope he behaves

 

kay💤💐

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Well look up the p ing now I know it is a bleep though when I said I had Maine **bleep** it did a bleep so at to make it mainecoon all one word 

kay

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi All

srcond dose same problems constipation (I can not eat any more fruit or drink more water ) I will explode indigestion NO fish and chips just a veg stew which I also had Thursday but got no indigestion but Friday started at 7 pm lasted for 2 hours but did not get to jaw this time I am wondering if the movicol I should start on Thursday because it may be because of the constipation and stuffing fruit in my Face drinking boiled water on the hour  and the wind is getting trapped my daughter also does me a nutri bullet drink with fig in it every evening 

i am sorry I missed the joke I will look the word up later I am sat waiting for my nurse to arrive 

I felt dizzy this time as well and felt as if I had a head cold last week it was my nose and felt if getting a cold so not sure if there connected or not but the indigestion and constipation def are 

hope you are all keeping as well as you can 

am I looking up Epping **bleep** will nip back and look

 

kay

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

thanks Kay, much appreciated

xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hiya Optimissy64,

 

gentle hacks around the lanes will be perfect now the weather is getting better.

 

I have to confess I've ignored medical advice and Dexa results and carried on riding when I shouldn't, altho I've taken the precaution of wearing a back protector. I came off a couple of weeks ago (when that horse wasn't being quite such a sweetie!) and was surprised my pelvis stayed in one piece.

I think both he and I are probably old enough to know better- he's 23 and shows no sign of acting his age- and I'm determined not to bow out gracefully!

 

Let me know how you get on

xx

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile😸

Love the horse he certainly seems to be enjoying himself years since I have ridden one the feel of freedom when out on a horse is great 

GOOD LUCK with your scan today hope all goes well everything crossed for you a very nervous time butterfly belly today 

 

will check back later see how you got on

 

kay

 

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Love them purple?

pussy
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi nicky08

yes I must have been on the site since 2010 when I got my secondaries that were Missed initially 

and I emailed lemon grove a few times she gave me the lift then when scottielass  said she was 20 years in it gave us all hope. Good we are still here nicky 08  9 years since your secondary diagnosis 7 since mine but I know 2?years before something was wrong but they missed it because of protocols scans can only be done to  doctors words and they scanned upper right quadrant and it was in lower left on sternum 

sorry not replied earlier but not been to good (chemo)but feel better today)

 

take care hope hope you get another 9 or even more

 

kay


@nicky08 wrote:

Hi spongebobs.

I'm gatecrashing as well!

Helen, hope you are OK after yesterday's dose and the SEs don't get too bad.  I expect you are looking forward to the week away from hospitals.  Although if Moijan's comments that in the 3rd week she speaks her mind maybe you should watch out where you go!

Pussy/Kay. It was so interesting to read one of your posts when you mentioned Lemongrove and also Scottishlass.  I remember them well and LemonGrove in particular helped me with all her information about receptor status changes.  The lovely Scottishlass was one of our little group of Darling Buddies of May.  We started off as a support group in May 2008 when we all started chemo together - some primary ladies and some, like me, a SBC lady.  Unfortunately we have lost a lot of those original ladies and Scottishlass joined in with us after a couple of years.  It was a big shock when she passed away, she had lived with SBC for such a long time and was, as you say, a real inspiration.  How we miss them all, although the rest of us are still going strong some 9 years down the line!

Good luck with all of you on the Eribulin train - let's hope it works as well for you all as it is obvioulsy doing for Moijan - grear news from the scan.

Nicky x



 

 

Optimissy64
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh what a sweetie that horse is. Reminds me of how i want to get back to riding again, despite the arthritis. It'll just be gentle hacks round the lanes of my local stables now though, and will wait till I get the baseline DEXA scan results back, as if my bones are a bit thin don't want to fall off and break something on top of everything else........ 

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Tried it but it really wasn't me!
Lovely horse pic xx
withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Moijan-

muddy horse to cheer your day. I've just noticed he's flippin well smiling for the camera!

 

Love the coloured 'bobs, are you going to be purple?

xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

16826010_1396767213677244_4382528527332835535_o.jpg

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

 
Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

image.jpegimage.jpegimage.jpeg

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Oh, I do love your replies Withasmile....

 

how about a snap of your muddy horse....that would really make my day go 'with-a-smile'......

or rather with more of one!

 

xx

withasmile
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

thanks Moijan,

 

family and friends seem more anxious about the results than I am.

Maybe I've just got resigned to it all by now but I can't see much point fretting. I'm determined to have a really fab week!

 

Off now to scrape some mud of the horse who seems determined to roll in the muddiest part of the paddock.

Looking forward to seeing the avatar colour selection

xx

Moijan
Member

Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile,

 

yes, very best wishes for your results...am working on your suggestion re the avatars in different colours.....

hugs,

 

Moijanxx