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Just.joined got secondary bc, would like to introduce myself

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Re: Just.joined got secondary bc, would like to introduce myself

Hi Sarah, Sorry for late reply I've been in hospital last week, getting ascites drained. I won't go into it all, if you read Ramades post I sent her, it's on there. I have been took off eribulin, my onc said it wasn't working just by Going of BM, when my scan results come it showed it had shrunk tumours in my liver and omental had shrunk, not happy. 

She started me on paclitaxel only had one sesh of that next one was cancelled cause I was in hospital. Start again on Friday, not looking forward to it cause loads of people get bad side effects off  it. Glad you enjoyed your holiday, nice break for you..So were you ok on paclitaxel?  It's so hard when there's no more options. Macmillan nurse is trying to bring my app forward from the 12th Sep just so I can speak to her. I have lots of questions for her. Just had another scan while I was in hospital  and haven't been told much but they said cancer has spread substantially, that's all they would say. Anyway, good luck with everything, hope your treatments kind to you. Lots of love Shelly.xx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Ramade, sorry for the late reply, been in hospital all last week. Got ascites back just 3 weeks after having it drained. They've put a permanent drain in now. I was really ill, couldn't breath and painful.

took 10 Litres both times. I've now got fluid in the lining of my lung, if it doesn't go after ascites   all gone it's probably cancer spread. Got app for 4 weeks so they can see if it's there, if it is they'll drain it. 

Anyway I'll get back on track lol. I'm not on eribulin anymore. Took me off it too soon, said my markers were going up, when I got my scan results everything had shrunk apart from bone.

Im now on paclitaxel only had one, second one got cancelled because I was in hospital, getting my next one on Friday. I struggle with tiredness all the time, some days worse than others. Don't think I had anymore problems. Hopefully you won't. Think everyone tolerates it differently. Hope your ok on it and don't have any problems. Good luck with everything, love Shelly.xxx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley ,

I am going to be starting in Erublin this Thursday ..

I have had three weeks off to allow the pacitaxol to get out of my system. This has allowed me to go away for a cheeky week in Majorca with my youngest daughter and it has been wonderful to make nice memories.

Im hoping that I don’t have too many side effects from the Erublin especially since I have felt so well whilst I was on the last treatment .

My onc is hoping that I might get six months out of Erublin but it is difficult when your options become more limited but at least he said there may be further options where as his registra had said Erublin was my last option.

Anyway I’m planning on keeping going and making the most of each day. 

I wish you look in your treatment x

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley, how are you finding Erubilin? I have also had most treatments and have one cycle so far. I'm finding the fatigue difficult as I struggle to get up from a chair sometimes which has never been me before. Does this wear off over time do you know,i'm so frustrated by this.

Ramade x

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Linda, I was dx 2 year ago but I know I definitely had it a year at least before that because of rib pain, docs kept fobbing me off so I phoned the bcn myself. Got a scan within about a week. Hate waiting for results, I've waited 2 months before. 

So did you not have bc previously before that? You are doing really well 10 years and still going strong I hope. I've had all them treatments you've had. I was on letrozole for a few years when I found my primary, I had a full mastectomy and 20 lymph nodes removed, think about 10 had cancer in them. The longest one that's worked for me since I've had secondary's is capcitabine. Worked for just over a year. I hope they find something else be gutted if they don't. Thanks for replying and wish you all the best and good luck Linda.

love Shelly.xx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley 

Did not realise it was 10 years for your primary breast cancer.  Have you just been diagnosed with secondary breast  cancer? 

It is a worry when we have CT scans waiting for results . I quite often have to wait upto 5 weeks for results . 

I was diagnosed with breast cancer and bone mets at same time com ing upto 10 years  2 years liver mets. Over the years I have had various treatments. 6 chemo back on 2009 then Letrozole for 4 years then Everolimus and extermestane. Capecebine for 10 months then 10 pacitaxil . I am sure there must be something out there you can try if pacitaxil does not work. Don't give up. 

Good luck 

Linda 

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi  Linda

Glad the chemo worked for you but shame it had to be stopped because of neuropathy. I've had tomoxifen for my primary was on it for years. Then they tried  it again when I got dx with secondaries but it didn't work. Hope the chemo your on now keeps working for you, fingers crosses. 

it wasn't a nice feeling to be told nothing more they can do. If it does come to that I will be asking for something else or a second opinion. There are 100's of different chemo so don't believe they can't find me one.anyway, good luck with everything and thank you very much for replying to my post.

love Shellyxxx

 

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Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Sarah, thanks for replying. You haven't done to bad on chemo then, apart from your nails and neuropathy, I had that with last chemo, so I'm bound to get it again. I shaved my hair of when I was on last chemo, they said it will only thin but it was coming out in clumps and looked a mess.. I don't mind as I lost my hair 10 years ago when I was first dx, I was gutted then, not to bothered now. I just wear scarves and tie them in different ways, they look nice. Sorry to hear about your liver mets. I'm waiting for my scan results too but my onc is on holiday for 2 weeks now, so will have to wait a while.  

Let me know what chemo they put you on. Good luck with everything, fingers crossed for you. Thank you so much for your kind words.

love Shelly.xxx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley 10,

I have just completed 24 rounds of weekly pacitaxol and have tolerated it incredibly well.

 The only slight side effects I have suffered with are minor neuropathy in the feet and my finger nails have also suffered. I have cold caped throughout and my hair has improved since being on letrozol which sadly didn't work for me although I have lost all other body hair.

All in all I have found it very manageable and have carried on life as normal, the treatment had been very effective for me and all my liver tumours had responded well, unfortunately following my latest  CT scan whilst all my other tumours have still responded well I have a new one to the liver so it is back to the drawing board to see what treatment options are still available to me.

I wish you every luck with your treatment.

 

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley

Just noticed your post about pacitaxil . I was on it for 10 weeks backend of last year. I should have had 12 but started to get neopathy in fingers so it was stopped. It did work really well though. Was put on tamoxifen which worked for 9 months. I am now on Navelbine . 2 tablets per week. It must have been a shock to be told no more treatments after this chemo. 

Good luck. 

Linda 

Member

Re: Just.joined got secondary bc, would like to introduce myself

I’m wishing you lots of luck for your results. Xx

Im still waiting for my date for scan

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelly sorry it’s taken a while for me to reply.

I really don’t know much to help with what the lump would be.

I went straight to sbc with mets in spine and my lung

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Chrystal, I didn't get my scan results, my onc thought she would be able to read them but she couldn't. Will have to wait for them to be read properly. I'm no longer on eribulin it has stopped working. She is putting me on paclitaxel, start in 3 weeks. She also told me there's no more options for me after this one, so not a happy bunny. Not looking forward to paclitaxel as I've read lots of bad reviews. People saying you get neuropathy and really bad pains in your leg, also bad diarrhoea. So wish me luck. Hope your scan results are good, fingers crossed for you.xxx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Chrystal, I absolutely love this forum, so glad I found it, it really helps to talk to people going through the same thing as yourself. Bit nervous about scan results. I've developed a huge lump in my breast, the opposite one to where my primary was. Do you think this could be secondary or another primary. What are you dx with. Thank you for replying to my post.xx

Member

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelly. Wow you’ve had a lot to cope with. 

I hope you find being on here a help as I did especially at the beginning . Fingers crossed for your scan results. I’m waiting for my date to come through for my next scan . 

Anxious times but good to chat to people who understand.x

Member

Re: Just.joined got secondary bc, would like to introduce myself

Thank you so much Annie for replying to my post. Definitely been through the mill lol. I've been fine on eribulin apart from at the start. Was just tired all the time and just generally felt unwell. They reduced my dose and I've been great on it. Still suffer with fatigue but that could also be the cancer. Anyway thank you for your support and good luck to you too.xx

Community Champion

Re: Just.joined got secondary bc, would like to introduce myself

Hi Shelley, and welcome to the group. Thank you so much for sharing your story. It has been quite a journey for you, hasn’t it? I’m so sorry it took so long to discover the source of your pain. I think we know our bodies and when things aren’t right, and I admire you for fighting the system to get your diagnosis. I’ve been on Erubilin and it’s a bit harsh, so well done you fir getting on with it. I have my fingers and toes crossed for a good result fir you. Best wishes. 🍀🤞 x

Member

Just.joined got secondary bc, would like to introduce myself

Hi ladies, my names Michelle or Shelly, I had bc 10 year ago, had mastectomy and reconstruction. Ovaries removed, so shot straight into the menopause. Then nothing for 7 years. 3 year ago I was getting really bad pain in my ribs, for a year I went back and forth to the docs only to be told every time it was costacondritis. In the end I phoned my breast care nurse and she got me in the same week for a scan. Went week later for results to be told I had stage 4 secondary bc which had spread to my ribs, spine, shoulders and long bones in the arms and legs. They started me on a few different hormone therapies which all stopped working. The cancer spread to my liver and omental layer, which is apparently rare. Then I've had a few different types of chemo, capcitabine, everolimus, can't remember the one I was on before the one I'm on now, which is Eribulin. Get scan results next week to see if it's spread. Fingers crossed. Sorry about the long post lol.x