Chemo Buddy Needed - Anyone Currently on Eribulin?

[pussy]

Hi Moijan

glad to see your back not very nice when your not well but always seems worse when on chemo 

hope everyone else else doing ok with treatment 

kay

[pussy]

Hi moijan

glad to see you back not very nice when your ill at the best of times but seems worse when on chemo 

kay

hope every ine doing ok with treatment 

[Moijan]

Hi Ladies,

had day 8 cancelled as had a virus and was quite unwell...better now. Hope you are all managing well?

take extra care of yourselves.

Much Love, Moijan💚💚💚

🐭🐹🐹

[Marnster]

Hello all!

am back in the board to let you know I'm back from my little holiday and have finished my whole brain radiotherapy. Just wanted to share a pic from my holiday to make you jealous. 

You can also read about my latest adventure on my blog. 

https://lifeistooshorttoskipdessert.com/2017/09/09/my-not-bucket-list/

Cheers

Marnster

[pussy]

Hi Lori travels 

yes you are right it is done with angiogram and you may have to stay in over night 

I have never had it not yet anyway but let's hope it works for you are you having it whilst on the eribulin?

they are only an hair with the beads but you will be checked first by the angio team that you are suitable for it 

let's hope next time we hear from you it has done the job it is good to know there is other options 

good luck with it all I wish you well

kay

[pussy]

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

glad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

Take care

kay

[pussy]

Hi Joelle

thanks for the update glad your mom got sorted it is frightening for all of us and our families but we just all have to try and get on with it best we can there is no other option I am afraid

gkad she had gone back to work if she feels that is right for her i on the other hand decided for me it was best to retire as I worked for NHS in cancer clinic and decided it was me time and I was not giving what time I had left to them we are all different the way the treatment works for us and our out looks 

i hope things are good for your mom on eribulin 

I had to wait 9 months for my first scan on eribulin because there was a back log if people and though I did see onc and the ct images they still have not got the report so I am waiting for that to be posted to me when it is done 

Take care

kay

[joellek]

Hi ladies!

im back again, I just want you to know i always read your posts and think of you all. just dont always post so im not the whiny daughter! bc i know u guys all are going through this and so much more!

so we r currently waiting in the waiting room for erubilin infusion after seeing the onc. Onc gave us some good news that tumor markers for liver were at 150 in july and now we are at 81! so, seems to be working and we can only hope its doing the same in the lungs and bones.

As for the horrible pain on monday night, it went away on tuesday morning and hasnt came back. thank god. Onc thinks it could be just fatigue from the erubilin.

Starting the 3rd cycle of erubilin today, we have a ct scan for chest and liver on the 25th, praying that all are shrinking!

Mom had the summer off as she is a teacher, she started. bk last week and is hanging in there and doing not too bad. im glad she went bk i think it keeps her happy and fights off fatigue!

praying for all you ladies that your treatments are working and your pains are getting better! lots of hugs

joelle praying for a cure xoxo

[lori_travels]

hey there!

So...I finished my 6th Eribulin cycle on August 22nd. I have been feeling pretty great (apart from the fatigue and all) and each appointment with my dr was more encouraging than the last. I had scans done and got the results yesterday. My dr said the results were mixed...a few lesions in my liver either stayed the same or shrunk minutely, as well as the mets in my spine continued to be stable. All lymphnodes and soft tissue were clear as well, too. 

Unfortunately, 1 lesion in my liver more than tripled in size which is what I've been feeling, thinking it was my gallbladder. Sort of wish that was what was wrong...It's a prominent, painful lump at the top of my right rib cage. I am gutted...I now have to have an angiographic radioembolization. I guess they shoot radioactive beads (yttrium 90 / y90)  thru an artery to the tumor as long as there is a clear path...and the process for that is just that...a long process. Could take at least a month to get the actual procedure done.  Anyone around here ever have anything like that done? 

I don't really know what to feel right now...on the one hand, yay...so much looks good, but...well, yeah...this sucks. 

Thanks for taking the time to read this! Hope everyone is feeling well!

xo Lori 

[pussy]

Hi joellek

if things are changing for you mam please get back in touch with oncologist or her nurse if she is still in pain and pain relief not working take her to A&E  at worst they would admit her to oncology ward which will sort out pain relievers 

please post when when you have spoken to someone and let us know how you and mam got on

kay 

[joellek]

hey there,

so glad erubilin is working for you kay!

got a question for you ladies! so its 4 an our
time here in boston and mom and i are up. Shes had non stop pain on the sides of her.back since last night, to the point of not being able to sleep as well as shortness of breath. She tried taking a pain reliever, but nothing changed. Any ideas? could this be from the lesions and fluid on her lungs? or could be a side effect of the erubilin? Can't even begin to tell you how many bad thoughts have crossed her mind that it could be smthg ti do with new cancer or more cancer. Ive tried to say anything to help ease the fear, the pain, but nthg is working...


joelle praying for a cure xoxo

[nicky08]

Hey, great news Kay, hooray!! Always a huge relief when you get results that show your treatment is working. Makes all of the hospital visits and side effects worth while.

Hi to all other spongebobs, hope it is treating you kindly and working its magic.

Nicky xx

[Marnster]

Great news Kay! So happy for you. So good that it is working for you. Long may it continue! 

[pussy]

Hi Moijan and everyone 

got my ct results today my tumours have shrunk in chest which are the ones I could feel so was aware they had flattened and my liver tumour has shrunk by half so came out very happy and will be seen in Feb 2018 but will stay on eribulin as planned previously if  proven to work 

hope everyone is as good has they can be 

kay

[Moijan]

Next option is the pain in the bum. ...fulvestrant, ......if that doesnt work then he mentioned more taxotere...not my favoured option xxx

however, not changing just yet cc

[janieb]

Hi Moijan
Sorry to hear your neuropathy is worse . I think mine has remained the same since I stopped Paclitaxel but it might be I've just grown to live with it . I am sometimes a bit unstable when on uneven pavements but still manage to do yoga balances which seems weird to me. What is your next option , I think Capecetabine was mentioned to me as next chemo . Fingers crossed for scan result . Don't want to change just now as have holiday in 2 weeks
☀️Janie x

[Moijan]

Hi Janieb,

i was so excited to hear you have been on Eribulin for a year!  i have been on it for about 14/12 now ans was beginning to worry a little,because at my hospital, apparently, im a bit unusual. To have been on it so long......i have had an increase in my peripheral neuropathy( pn) on it, but not a lot of other side ffects. I am concerned

about the added changes to sensation of my legs and fingertips.....my feet have been numbner since an early brush with taxotere in 2001...Im afraid i begrudge every permanent negative change due to. Drugs.....

eribulin is working less well lately, so my path is slowly wending towards the 'pain in the bum' drug.......and my guess is that i will  change from being a pleasant patient -to a complainer......when that happens.

best wishes Moijan

[pussy]

Hi janieb

well you go girl you certainly like living I am very active not partying past that now but love my swimming walking my dogs  riding my bike I generally keep myself busy and active but after day 8 on every occasion it knocks me off my feet every muscle aches and tired I have never experienced it has bad as this unless I have forgotten what others was like I have eribulin on a Wednesday and by the Saturday I can hardly walk my muscles  hurt so much this only happens 3 days  after the day 8 which was yesterday for me today they still ache I have managed a walk across the fields about 1 mile if that but knees hurt as well as my muscles tomorrow will be a bit easier and that will carry on improving through my week off 

i am use to it now so know not to arrange anything on that particular weekend 

kay

[janieb]

Scan results on Tuesday so will see if it is still working.  I have so few side effects I will be happy to keep going with Eribulin. Swam 25 lengths this week, kayaked for a couple of hours,  yoga every day, danced at a party till the early hours and then had to walk home 3 miles in high heels due to no taxis. Resting today as have blisters on the soles of my feet - oops I guess i should be looking after myself better than that! struggling with posting on here though. I found a thread that I had posted early this year but cant find it now !

J

[pussy]

Hi Janieb

the longest on here is Moijan think 20 cycles and hers is growing again though slowly if you read back you will find what she says 

i on the other hand will be on my 10th cycle next week not got my first scan results yet  hopefully 4 th sept I will get them if report is back from were ever they are sent these  days unless it is still in house 

kay

[pussy]

Good on you Marnster and make sure have a good time 

Glad you feel ok look forward to the pictures

kay

[pussy]

Good on you Marnster and make sure have a good time 

kay

[janieb]

I've been on Eribulin for over a year now ! Not sure how long it could keep working for. Anyone been on it for longer than this ?

[Marnster]

Thank you Kay. Feeling ok after today's first WBRT session. 

Have an an island paradise holiday scheduled for weekend after next and am not going to let anything get in the way of that so expect some more photos to make you all jealous soon!

Am also thinking about my next holiday after that!

[pussy]

Hi Marnster 

i am sorry to hear your news will be thinking of you this is what we all dread well it is for me 

I wish you the best and hope it works for you 

you have been an inspiration to most on here with your  holidays and swimming etc and not letting it stop your life you have taken it by the horns and shown it that it. Will have a fight on its hands if it messes with you 

take care 

and I wish you lots of luck with the rads and look forwarding to hearing how it is going for you 

kay 

[Moijan]

Marnster......that is rotten news, im so sorry. This bc is a real bggr, isnt it? Try as we might, it sometimes outwits usxx however, wbr might turn ut to be more effective...fingers crossed for you and lots of lovexx

Moijanxx

[Moijan]

Nicky, thank you for explainng about the blood thinners....I had a dvt on cape and my haematologist is of the opinion I should stay on them, but your case is completely different and an example of the fact we must all keep in mind that individual circumstances are likely to mean different treatment plans. Interestingly, tho the haematologist, whom I saw today is coming round to letting me go onto tablets...we had a long chat..,there are still NO Antidotes to the. New tablets.....any of them, but apparently they think it wont be long.

if i ask her, she would change me, but not to the drug you were on...one of the others is her preference as she said it would be easier to give it bd and work out a maintenance dose...so I will think more about it.

i lost hair in a friar tuck way..I also lost my eyelashes and eyebrows....interestingly my hair IS RETURNING. And my eyebrows and lashes are, though a bt more slowly.

If you stop the cold cap it will likely thin out.

the new hair is that rubbishy thin baby hair just now...but the thickness is slowly increasing and my hairdresser reports no bald patches....so watch this space. I cover it with wigs, so that doesnt help the quality much.

Thank you for your kind wishes xx

[Marnster]

Happy weekend everyone!

After having brain surgery two weeks ago, I now know my next steps in my treatment. I've written about it on my blog if you're interested in the details.https://lifeistooshorttoskipdessert.com/2017/08/19/what-happens-next/

The highlights are that the MRI I had this week found at least six new lesions on my brain with potential for more to be currently developing. The upshot of this is that I will be starting whole brain radiotherapy on Monday.

Not the news I was hoping for, but at least I know what is happening now and have a plan in place for treatment.

Hope everyone is doing ok.

[Bousy]

Hi Nicky,

I'm just starting cycle 3 today. My hair has thinned a lot but still have a covering. I have still got my eyebrows and lashes. I had Fec and docataxel and only lost the whole head of hair. I'm hoping this works as not many options left. 

Liz x

[nicky08]

Great news Moijan and you can keep going with the devil you know rather than changing to one you don't!

I think the concern with my bone marrow is more to do with the fact I have had secondaries for some 9 years now and have been on several different chemo's. When I was being screened for the PIPA trial earlier in the year I didn't get to go on it as some of my blood counts weren't recovering well (from having been in Kadcyla) so they thought my bone marrow was compromised. However since being on eribulin they have been fine, other than wbc being hit for which I need the filgrastim injections, so I think it's more precautionary than anything else. Also, if eribulin hasn't shown to have stopped working in my next scans it is a chemo I could go back to after the hormone treatment. We will see! As to the blood thinning injections I am no longer on them, Kadcyla was dropping my platelet count so low I didn't need them any more and I had been having blood thinners due to having atrial fibrillation and, as a direct result of that, a TIA some 4 years ago. As I have since had a cardio ablation to correct and stop the AF which has never returned I don't actually need my blood thinned any more, or no more so than any other cancer patient with no history of these sorts of problems. All this was advised by my consultant at The Bromptom where they have the best cardiology Drs pretty much in the world, so I know he gives the best treatment possible.

A quick question to everyone on eribulin. How is it that the SEs are meant to be hair thinning rather than definite/100% hair loss but I have lost every one of my eyebrow and eye lashes? This has never happened before when I have been on FEC and Docetaxel (both 100% hair loss). After 6 cycles of eribulin I have now had to resort to false eyelashes, which are great by the way, and drawing in my eyebrows each day. After 6 cycles each of the other 2 chemo's I still had bows and lashes. My actual hair is still hanging on possibly due to cold cap, which I now can't stop using in case it does all fall out, and is definitely longer and possibly thicker than when it first fell out - but nowhere near as thick as pre chemo. Just a thought and wondering if I'm just unlucky.

Nicky x

[Moijan]

Hi there Nicky,

'bone marrow compromised'?  Did they explain that to you? And it wouldnt appear to be cnnected to peripheral neuropathy as far as I can see......😶

As you know, im a great admirer of the Marsden....I recently scoured macmillan re s/e as my legs felt like they belonged to someone else....a bit better now tho, however, I found a very long list of possible s/e each of which they rated as either less of a concern or a concern...dont recall anything about bone marrow.....but as we all know, we have a plethora of blood tests two out of every three weeks, so maybe one of those results hit the onc between the eyes and hes being careful -which sounds excellent xx

yes, thank you MRI - no change so am having a two week break, to regain myself!

and as you know....I am also at some stage, heading for the pain in the bum...which does not appeal to me at all.....will you be missing out a blood thinner tablet before and after the pain in the bum injections? As i understand any haematoma in the muscle will make things more painful.....have discussed changing my inj from the evening before to  the morning before the chemo inj, so as to have the 24/24 up beforehand and miss out the one on the day of treatment.

Anyway Nicky, fingers crossed that Eribulin has doen a heap of good for youxxx

[nicky08]

Morning spongebobs.

A bit of an absence from me but just getting on with things and a few small, one/two nights stay away which has meant no easy access to wifi.

In answer to withasmile's question I was on rivaroxaban until earlier this year and had been for about 3 years. I was on it at my request as I didn't want to keep having the heparin injections and it is prescribed fairly routinely these days for cardio patients that need it. I didn't have any side effects, or any that I was aware of given that I'm on a cocktail of cardio and cancer drugs! You need to carry one of the warning cards with you at all times, but I expect you had to do this with the injections. It doesn't yet have an antidote, unlike warfarin, but one was in the pipeline when I was told about 2 years ago so it's possible there is one now, or soon. It has a 24 hour life so it doesn't take long to get out of your system and of course no blood tests are needed to work out what dose you should be on. Feel free to ask me any questions.

Moijan, hope the MRI is relatively clear so you can take a break from Erubilin, it certainly sounds like the wonder drug for you. I have had 6 cycles and am now getting a little bit of peripheral neuropathy, which I've never had before despite being on various chemo's that have it as a SE. It looks like I will be coming off it after 8 cycles, mainly to make sure my bone marrow isn't compromised (words from the Marsden!) and then it's most likely to be the hormone pain in the bum! But definitely need a short break in between treatments to get some strength etc back before starting something new. It was all a rush getting started on eribulin as the treatment I had been on wasn't holding back my liver met/s so it was a case if getting started ASAP whereas I hope this time around I will have continued to respond well and therefore get a bit of a breather.

Hope all other spongebobs are coping with SEs and that it's working wonders for you as well.

Nicky x

[Moijan]

Thank youx

[Marnster]

Good luck with your MRI results today Mojian. 

Thinking of you. 

[Moijan]

Withasmile...thank you xx will be pm ing you shortly...lets just say, a change is sometimes as good as a rest...xx

Marnster, so good to hear from you as well. Glad you felt able to update us xx

Regarding your diplopia, My guess is, maybe there is some inflammation following the surgery

I spect youve already thought of that and are still concerned xx, just  in case its not that....but there is a really good chance it IS that, you know,   Because the brain doesnt like being cut or radiated and reacts by swelling a bit. 

I know its not the same, but I examined my toe yesterday, just by prodding and gently kneading it to see if it felt the same as its opposite number...and its swollen up more again! So, our body reacts to any insult!

Interesting to hear about your energy during a chemo break...ive been on one chemo or another for about 3.5 years now...I am concerned about inviting resistance...but more than that...would the bc take off to other organs if I stopped?

noone can answer that one...but both yourself, Withasmile and the lovely Barton, all seem to have coped with that anxiety better than I, so id love to hear how you do all cope...in fact Im going to start a new thread on that very question and see what pops up.

love and best wishes to everyone xx😎

Moijan

[Marnster]

Hi everyone

Been a bit quiet lately because I've been recovering from brain surgery, but that feels like a bit of a cop out because the recovery has been really easy. This time last week I was just being transferred out of one night in intensive care to a general ward and then I was home by the next afternoon. It's been nice to be home back in my own home. 

Everything is healing really nicely and i feel pretty much the same as I did before the surgery. Unfortunately I still have some double vision and unable to stop going cross-eyed. It's ok if I close one eye so have started wearing an eye patch the last couple of days for getting around. 

Having an MRI on Monday so hopefully that will be able to work out what is causing the eye problems so we can fix it. Not sure what the next treatment option will be, but expect some kind of radiation to an area on my brain. 

Dont go back to my medical oncologist until until the end of the month to discuss when we re-start chemo. No doubt will depend on what is happening with the radiation as they won't do both at the same time. Haven't had any chemo since 18 July. It's amazing how quickly your energy can return when you have these breaks. I always feel it's not affecting me that much. And then I take a break and start wondering to myself, where is all this energy coming from??

keep up the good work on Eribulin everyone! Hope it continues working for you for as long as possible and the side effects are manageable. 

[withasmile]

hi Moijan

glad you had a getaway and hope you had a nice time?

I walked into the corner of the bath and decided my middle toe was broken so strapped it to its neighbour but it healed crooked, and I subsequently learned it should've had a little splint so it would heal straighter. It wasn't painful but now its a nuisance!

I believe the 6-week rule is now outdated.

Hope you're managing with the fluid retention which is so uncomfortable and I had the itching last year prior to starting chemo- I could've torn my skin off- so I really empathise.

xx

[Moijan]

Hello everyone, have bedn away and very poor wifi.

someone asked how many cycles ive had and from my recent gp letter i discovered its 20.

have had fluid retention, and sore legs  this cycle.....also loads of itching......so im thinking( and this IS a first for me....but im thinking that if my mri shows minimal change, I might ask for a short break....only thing is....I was told more than 6 weeks and I cant go back on it....,not sure if thats still true as initially it was funded on the drugs fund....but even a few weeks might help me feel like a 'normal' person....have to chat with him.

by the way, have any of you ever hurt one of your middle toes and wondered if it was broken? I caught mine in a shoe on the floor( Stupid, I know) and wrenched it...saw a walk in centre nurse treatment  who examined it about 45 mins later and thought no break or dislocation, but its still swollen two weeks later...,tho it hadnt been hurting until I examined it again this morning...usual care is to strap it to the next toe for support...whch I did.

hey ho

Moijanx

[helen44]

Hello Spongebobbers
Good luck for 16th Moijan. You continue to be my inspiration.
I had my onc appt today. No visible reduction in the liver but no progression either so cycle 9 day 1 tomorrow and I am stable apparently. Next appointment 20th Sept. I will take stable!! Bones are behaving too.
Take care everyone, try and enjoy the sunshine wherever it is!!
Love Helen x

[withasmile]

I'm keeping everything crossed for 16th Moijan xx

My July CT scan showed nothing new cancer-wise so I'm still allowed my chemo holiday. They'll scan again beginning of October and if there's any growth I'll return to Eribulin.

My leg DVTs and lung PEs have reduced right down so onc suggested a switch from Fragmin injections to Rivaroxaban tablets (I know there's no antidote but it does have a short half-life).

Is anyone else on Rivaroxaban?

xx

[Bousy]

Hi Moijan,

Thanks for the good wishes, I hope everything goes well for you. The pain in the bum isn't bad to have and even though it didn't work for me I felt so well on it. People commented on how well I looked. 

With Eribulin I've just had day 8 of cycle 2 . Been ok, been very tired at beginning of cycles, today have bad indigestion , although I am on lanazaprozole. Hair is very thin but still got some!

Have scan after cycle 4.

Just hope this works as not many options left.

Take care,

Liz x

[Moijan]

Hello Withasmile and Kay, Bousy and all the newer family members.

Just had an MRI this morning and will hear my fate on the 16th. Am hoping to stay on the spongyjuice for a bit longer-but I expect the 'pain in the bum'will be unavoidable at some stage.

I wish you all, at least as much success as I have had on Eribulin.... tho my legs are feeling stiff and I have a sore lip this time round! Have just finished cycle 17? Anyway
Do take care of yourselvesxxx

Moijan😎

[withasmile]

hi Carol,

needing to rest after each core is difficult I know, but I do think the key to surviving chemo is being able to adapt to the circumstances we're placed in.

Giving the chemo the energy it needs to do its work is top priority and its the best excuse to avoid the aspects of housework we've never liked!

You're not hopeless, your bod is just adapting to fighting AND WINNING this fresh battle.

xx

[pussy]

Hi Moijan and all others on eribulin

it must be something they tell every one being unusual I was told that when my cancer grew from behind the implant I had after mastectomy I was just unlucky  yet I have found quite a few also unusual or unlucky 

hope your PAIN in the bum clears soon so you can get the treatment otherwise it might be like a carry in film 

yippee I finally get my scan after cycle 8 next week I am envious of all you getting scans after 3/4 months or cycles 

got appointment for sept 4th for results as well 

the fatigue is the worse for most of us especially if like me you are always on the go I get out of breath doing house work and get so hot as well but pottering around garden I am ok and I am listening to my body a bit more these days and rest when the fatigue comes on I also suffer with lack of. sleep that is nothing new apart from chemo day steroids when I know I will not sleep I have always suffered that use to go to work on 2 hours sleep the days I did sleep people use to say bad night because I looked more shattered 

Wishing you you all well on your treatment 

kay

[bezza111]

Hi Withasmile, thank you for your reply, you have made me feel alittle more positive, it is such a scary time,but the chemo is being kind at moment, just struggling with the fatigue, feel so hopeless,trying to do chores is so hard I have to rest after each chore.  Thank god i have hubby at home and he helps me an awful lot with everything, also our boys are grown up so at least i dont have little children to depend on me. Really admire these parents that are having chemo, and also having children to look after,must be so hard.Really appreciate your reply,it has given me hope,thank you so much,really appreciate it,keep in touch.Lots love, Carolxx

[bezza111]

Thank you Bousy,it is really helping me on this site hearing everybodys story, everybody is so positive.Good luck with your treatment and scan.lots love Carolx

[Bousy]

Hi Bezza,

I will be having a scan after 4 cycles so hope it works

Good luck.

Liz x

[withasmile]

hi Bezza,

hoping Eribulin works for you...I came on to it with my 7th 'outbreak' (breast/chest/underarm/underarm/underarm/neck/stomach & liver) after everything else had stopped working and it certainly seems to have helped.

The fatigue got me too but there are relatively few side effects compared with other chemos, so rest-up and don't fight it- it WILL pass

xx

[bezza111]

Hi Liz,

I was on the same treatment as you before i started this new treatment and didnt work, i was so disappointed as i was on it since feb,nearly six months before doing a scan,thought they could have done scan sooner,with this new treatment i have scan in 3 months time, good luck with your treatment, keep in touchxx