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Starting Eribulin and could do with a buddy! 2020

9 REPLIES 9
Mermaid1971
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hey Peggy, 

The Thigh and hip pain has been worse in the mornings, first thing or if I get up to go to the loo in the night its like my hips are just like " umm nope, we don't want to turn!". 

This chemo is definately better in terms of being able to function though. When I was on FEC-T it literally put me on my butt each session!. 

Myself and the wife are doing the same as yourself. Booking weekends away to visit friends or go to places we always talked about but never made time for!!. 

Whereabouts are you?. It would be lovely to arrange a meet up for those that can at some point. " A ladies wot lunch " date!!. 

Its so reassuring for me personally to have people I can talk to who get all this horrid cancer stuff, but also people who you can laugh with too!. Ive found dark humour has got ne through so much recently.

Sending hugs and lots of love xxx💖💖💖

Peggy2020
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hi Mermaid,

I hope you are having a good week. Is it your week off? I saw you mentioned thigh pain and I've had that for the first time this week after walking more than usual, too. No idea why but ibuprofen has been helping. 

You do have a lot to get your head around. I think it goes up and down. Sometimes you can distract yourself and other times it is overwhelming. 

The routine of this chemo has settled down enough for me to book things in my week off. Our family went away for 3 days last time. And next week I am doing a short trip with my Mum to see Highclere Castle (Downton Abbey). I'm trying to make the most of the better weeks and the low number of covid cases at the moment (at least where we are).

I hope you can do some things you enjoy too. Take one day at a time and its surprising how they add up!

Bless you,

Peggy

Mermaid1971
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hey Peggy thankyou for replying to my message.

Had my 2nd chemo today, had the foggyness same as yourself for a couple of days after the first but then things settled down a bit.

I am getting slotnof bone pain in my hips and thigh bones?. Mostly first thing in the morning but also when climbing stairs or walking too far.

Quite frustrating for someone that didn't hour shifts and walked everywhere previously. Getting used to not being able to do as much has made me more frustrated than anything!.

Still getting my head around the having to have chemo forever thing. Only a year ago it was 6 rounds of fec t, surgery, radio and checkups!.

I still maintain had I had the radio things would be different now, but I can't live in the past, I need to look to the future. 

Sending much love xxx

Peggy2020
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hi Mermaid,

I can't say anything about your diagnosis or treatment but I hope your oncologist can answer your questions.

I am also on Eribulin. I started a few months ago. To start with my treatments were delayed each time because my blood counts were too low. But now I am on a 60% dose (ie lower dose) and treatments happen regularly, 2 weeks on one week off. I use a cold cap because I wanted to give my hair the best chance (some ladies get thinning). It makes a 5 minute treatment more like 2-3 hours because you have the cap on before and after the treatment but it is working for me and I am glad for that. Side effects are pretty manageable. I feel quite foggy-headed for a couple of days afterward and don't do much. But then I start feeling better. No nausea or sickness. Constipation for a few days which can get a bit uncomfortable. Probably the best bit for me is that I had quite a few symptoms - fever, fatigue, cough - from my cancer but that has all improved a lot. So overall, I find it manageable and I'm thankful I feel much better than I did before.

I hope that helps and happy to be your Eribulin buddy for a bit of moral support. It is tough not knowing how well a treatment will work but I am thankful it is going well for me so far and I pray it will help you, too. (I edited my original reply because I saw your earlier posts and realised more where you are at and how difficult the last few months have been for you. My treatment stopped too and it was a really tough time. I really hope Eribulin works well for you.)

Peggy xx

Mermaid1971
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hey Nicky,

Thankyou so much for answering me.

I do find it very hard to believe that it is this chemo or nothing as I read about the immunotherapies, clinical trials etc coming out all the time. 

My oncologist also took great delight in telling ne they had " secured funding" for my chemo. Did I need to know that?.

I feel very much like the surgery and fec t didn't work therefore they will throw this at me snd if this doesn't work then tough. Kinda like the guinea pig that didn't work out?

I do not mean any disrespect to anyone as that is not my nature at all. This is just how I am feeling. I've gone from surgery and check up in 6 months after radiotgerapy being cancelled, to new scan and a ton of cancer progression which may/ may not have been avoided with the radio. I will never know and that bites at me on a daily.

I just feel alot lost, confused, terrified, scared that this chemo won't work and that the next scan will bring even more bad news  but im sure pretty much everyone here has been through and felt exactly the same. Xx

 

nicky08
Community Champion

Re: Starting Eribulin and could do with a buddy! 2020

Hi mermaid

It seems like chemo is your best option as, being ER negative means any hormone treatment  is unlikely to be effective. As you don’t appear to have other forms of chemo, other than FEC-T initially I would think there may be other options of treatment available (after this one) although obviously don’t know as much as your own oncologist. 
If you are unhappy with your current oncologist you can ask to change, either in the same hospital or maybe one that’s close by. Awkward if you stay at the same hospital but you need to do what’s best for you and ignore any issues that they might have! You can get a second opinion usually through the nhs, as you are entitled to one, but it depends where you live and which hospital you might be referred to. I know, pre-COVID, The royal Marsden weren’t accepting any new referrals unless they could offer the patient a trial, although that might have been only the consultant I was trying to see as he’s quite high up, but previously I have seen him on the nhs. As my treatment wouldn’t have transferred to The Marsden I only went for the consultation, not the follow on. It was to see if my own, local hospital was doing the right thing for me. Which they were. I have also paid for a private consultation with him and it may not be as much money as you are imagining. You can always find out by getting in contact with a consultants secretary (they often have 2, one working for the nhs and one for their private clinic). The addresses and phone numbers are usually listed on the hospital website. 
Hope this helps.

By the way the other Eribulin thread is quiet because there’s not so many people on it at the moment, however it was still active a few months back when I was still on Eribulin so it could be worth asking on there as someone who is still on it may reply. Different treatments seem to go in phases so Eribulin isn’t used by so many (oncologists) at the moment whereas it was used quite a bit a few years go. This was before all the inhibitor drugs became available which give other options now, not just chemo.

Nicky x

Mermaid1971
Member

Re: Starting Eribulin and could do with a buddy! 2020

My diagnosis is metastatic and locally advanced breast cancer ( loco regional right sided lymphadenopathy and distant disease in right lung, right of neck trapezius nodes and right orbit of eye).

Original diagnosis was 42mm tumor in right breast with multiple axillary lymph nodes. Followed by lumpectomy and second surgery as no clear margins. 

Radiotherapy was cancelled due to covid.

Grade 3 invasive ductal carcinoma ER negative , PR positive HER2 negative. 

I did 6 rounds of FEC T first and was then supposed to have the radiotherapy which didn't happen. 

Then had the scan which showed up the metastasis. 

If im honest, since June last year half of my diagnosis hasn't even been explained very well to me. 

My lung scan was explained as " a couple of nodes" , followed by " oh no there are multiple deposits throughout , therefore we cannot treat this"!!. 

I would just really really like some help to understand it all thoroughly and have the support I heed to continue to live to the best of my ability with information given by someone who actually comes across as they care!! 😉 xx

Mermaid1971
Member

Re: Starting Eribulin and could do with a buddy! 2020

Hey angel eyes.

Apparently according to my oncologist this chemo is like my last chance saloon?.

If this doesn't work he thinks there is nothing else out there that will.

This is basically to stop the cancer from spreading and to keep it stable.

Very scared as all I have in my head now is " well if it doesnt work is that it?". 

My wife said maybe we should go for a private 2nd opinion but that costs and i can't work so that would take a while to save for!. 

My head is literally a merry go round presently - all bets on eribulin or palliative treatment!. Xx

Guest user
Not applicable

Re: Starting Eribulin and could do with a buddy! 2020

Hello Mermaid

I'm not on Eribulin so cannot help you there. 

Just wondered why your Oncology team has put you onto another chemo!? Have you not had any hormone or targeted therapy? Forgive me, it seems treatment plans can be so different (apart from mine: HER-2 positive. This seems to have a very fixed protocol).

I was only diagnosed in March so know how you feel 🙄. There are lots of experienced ladies on this site who will hopefully reply to you. They have such a wealth of knowledge. 

Hope you find a buddy soon 🌼.

 

Angel Eyes

Mermaid1971
Member

Starting Eribulin and could do with a buddy! 2020

Heyy guys,

I start my Eribulin treatment today.

Very anxious about it, although I have read the pre existing thread on here it seems it hasn't been added to for a while.

Had my picc line put in 2 days ago. I didn't have one with the fec t and that was a mistake as most of my veins collapsed, so this time round I had no choice!!.

I've read up on all the side effects etc but I guess it still doesn't stop that feeling of " whats to come"!!.

Current diagnosis - advanced breast cancer to the lymph nodes, breast bone, collar bone, neck, right lung and rest of axilla that was cleared. 

Ive Been told I'm " treatable not curable" a couple of weeks back so struggling with that also, but im finding positivity from reading the posts by other ladies in the same position.

I Guess I could just do with a buddy on the same chemo and a friend or 2 who " gets" how my head is feeling right now. 

Much love and light yo all xxx💖💖💖