Breast cancer stage 4

hi veronica

I have stage 4 breast cancer too. I was diagnosed march last year. I have it in lymph glands in my chest wall and spots in my liver. I have been on weekly taxol like you 3 weeks every month with one week off. My cancer is stable at the moment so my oncologyst is happy to keep me on it. As long as its working Im happy! Im scanned every few months and all is good. Have you been scanned?
I know how you feel living with secondaries is not easy but ill battle on! Surgery is not an option unfortunately. I dont know anything about zometa or leterzole. maybe someone else can help u out there.

Ladies

I'm not at Stage 4 (III c) but wanted to send you cyber hugs and support.

Best wishes to you both.

Dane

Hi Veronica
I was diagnosed with stage iv bc last august, several tumors in my spine, hips, skull, spots all over my ribs, pelvis, bone eroded in my arm. I had three different sessions of radiotherapy and was initially put on aromasin, with monthly injections of faslodex and infusions of zometa. The hope was that I wouldn't need chemo for years. However it didn't work and that treatment was stopped in Dec. In January I started taxol, six weeks on two weeks off, together with infusions of zometa (bone strenghtner) every three months. I understood I would have 24 doses of taxol and that I would be put on a different type of hormone therapy after that. This sounds like what your oncologist is suggesting. Letrozole appears to be a brand name for Femara which is a hormonal treatment. However my onc now says I'll be on taxol as long as it works. I have had probs with peripheral neuropathy in my right hand esp and with fatigue and nausea. At what should have been my 18th dose last week my onc decided to reduce my dose to week on week off, starting next week. I haven't had any scans since midway through where it showed that the tumors hadn't shrunk but were stable. I am terrified that this reduced dosage will let the cancer progress. Sorry that I can't be of any help.
Take care
MaryB xx

Hi all,
Thanks for your replies , good to know I'm not alone!! Our treatments seem very similar when I was wondering about a second opinion I'm still hoping this whole thing is a horrible mistake and I'm fine but as you all say just keep going from one treatment to the next. On a more positive note I was talking to a fellow patient in James's (where I attend) and she's 3 and a half years since diagnosis- breast ca with bone& liver mets, I'd looked up Internet and got myself into a state so yea we'll just have to keep going& get used to our new normal way of life . I'll continue having 3 monthly scans after my chemo so hopefully all the monitoring will pay off. Mary I'm sure you'll be well watched on reduced taxol & they'll adjust meds accordingly if required.
It really is tough but so are we ,I'm delighted to make contact with you going through the same stuff.

Im 15 months since secondary diagnosis. I had a very tough time accepting that this is it for life. But i have accepted it and Im doing well now! I attended the breast cancer conference last year and went to a workshop especially for ladies with secondaries. Really was the best thing i ever did. Met ladies with secondaries 10 or more years later. With treatments now a lot more people are living with cancer.

You are definitely not alone, the hardest part is accepting it! Its good to chat to others going through it. I always get 'so when does your treatment finish?'. End up having to explain it wont ever finish! Luckily i am able to take breaks every few months.

You seem to be doing well just keep the spirits up

Just want to say like Dane7 cyber hugs going your way ladies

Hi
Would just like to wish you all my support with your further treatment
Liz

Hi,

Just wanted to say how touched I was reading your posts. You ladies are an inspiration to us all.

Sending you all my best wishes and lots of cyber hugs.

Kath

I send cyber hugs too I think you are amazing and staying positive is such a good thing. Great to meet people ten years on who are good it gives you a boost

Hey everyone

Hope you are doing well Veronica

I was due back on taxol tomorrow after a few weeks break. Had a scan a few weeks ago.So today I got a call saying my chemotheraphy was cancelled and to come in on friday to see my oncologyst. There will be a meeting on thursday about me. Unfortunately Im thinking the worst, been stable for over a year I dont know want it to change,. Trying not to worry but its so hard not to

Hello Everyone,
I was diagnosed with a tumor in my femur in May 2013, just when I thought I had managed to get through my initial breast cancer (2010) and out the other side. It was a tremendous shock to me, especially as there have been conflicting scans and I may also have cancer scattered about my ribs. I have recently completed 10 days of radiotherapy at St Luke's and have Faslodex and Xgeva shots monthly. In general I have a positive outlook, especially as my aunt's neighbour had breast cancer metastasize into her bones 20 years ago and is still going strong. The worst part is that secondary cancer is not discussed in our society and I feel quite isolated. I tried to see if there was a support group I could join locally, unfortunately my local cancer centre runs all its support groups during working hours Monday to Friday. I live in Laois and work in Dublin, so I could only really attend a group at the weekend. If anyone knows of any form of online support I would be grateful if they could let me know. Also, if anyone out there is in the same situation and wants to make contact with me please feel free to send a private message.

Hi All,
Don't know why I came online tonight as I have been really great.
I too have stage 4 Breast Cancer.... mets on spine and in lungs...diagnosed 2 years ago at Christmas.

I am on bone infusion of Zometa every 2 months and daily Letrozole(Femara).

Feeling fantastic..... no side effects. Spots on lungs have shrunk since starting Femara.

Oncologist says that he imagines that I will be around 'for a very long time'.... his words.

Treatments changing all the time.....advanced breast cancer women living much longer. I feel very hopeful.

Ellie's message filled me with more hope.... she met women with mets for 20 years!!!

Look for the positive bits in all the messages.... they're what keeps my mood up.

Hopefully we will all be messaging each other for years to come.

Hi All,
Don't know why I came online tonight as I have been really great.
I too have stage 4 Breast Cancer.... mets on spine and in lungs...diagnosed 2 years ago at Christmas.

I am on bone infusion of Zometa every 2 months and daily Letrozole(Femara).

Feeling fantastic..... no side effects. Spots on lungs have shrunk since starting Femara.

Oncologist says that he imagines that I will be around 'for a very long time'.... his words.

Treatments changing all the time.....advanced breast cancer women living much longer. I feel very hopeful.

Ellie's message filled me with more hope.... she met women with mets for 20 years!!!

Look for the positive bits in all the messages.... they're what keeps my mood up.

Hopefully we will all be messaging each other for years to come.

Hi,

I came across an amazing blog today that you might enjoy reading

http://lisabadams.com/

Hugs to all

Kath

Thanks for posting the link Kathleen, I was lucky enough to be diagnosed at stage 2, but I enjoyed reading the blog and was particularly impressed by the post entitled 'Breast cancer is (still) not a facebook game' I am thinking of putting up some of her comments on my own facebook.

Good luck and cyber hugs to all you brave ladies with stage 4.

Karen

Hi all . I was diagnosed in feb had taxol and cyc for six months . Put in two stone in weight. Was on arimidex had to come off it now on femara. Doing well. Good to read everyone journey. Anyone else put in weight ...mets in lung

Does anyone know if there's a liason person in St Vincent's Private who would sit down with me and go through my diagnosis and scan results? My onc and the registrar in daycare are always too busy and just give a one-liner response and dismiss my concerns. I feel like I'm a nuisance. The nurses are great but they aren't allowed to discuss anything other than day to day stuff.

I found my breast cancer nurse Claire a great help n the private, always at the end of the phone maybe she can help or put you in touch with someone who can

Thanks, Wicklowlady. I remember meeting Claire many months ago when I was first diagnosed. I have a feeling she doesn't deal with stage iv but I'll try contacting her anyway

Hi all.

It is wonderful to see how active you are all on this forum and that it is proving to be a valuable method of supporting each other through diagnosis, treatment and recovery.

However, we would ask you to be refrain from identifying any specific healthcare professionals, especially by name. We understand that you may have the desire to share experiences about health care professionals but it is best done through the private messaging facility which is also available through this forum.

This is also to protect you and the Irish Cancer Society from possibly becoming vulnerable to legal action under libel law.

Thanks for your co-operation on this, and we hope that this message board can continue to be a source of information and support in the future.

Regards,
Shane
Irish Cancer Society Web Services Manager

Hi again!

2nd hormone treatment stopped working. Starting chemo on Friday on a trial.. think its called SNAP. Abraxane(taxol) 3 weeks on, one week off for 3 cycles then randomised to different regime.
Cant believe this is happening... but for some strange reason I am very relaxed about it all.
Would appreciate as many prayers as possible though.

Will keep you in my prayers and very best of luck with everything xxx

I too was diagnosed with mets to spine and pelvis last May.
I had originally been diagnosed with breast cancer in 2010 and had the usual treatments-chemo, lumpectomy, mastectomy with reconstruction and then radiotherapy.

The second diagnosis was a huge shock.

I had a tumour removed from my spine as a bone there was fractured.
This was followed by radiotherapy.

I am now like many other of the gals on this forum on taxol, three weeks on , one week off.
Awaiting scans to see if it is working.
Have been on Tamoxifen and Letrozole since original diagnosis so they obviously didn't do the job they were meant to do!

It is a scary place to be. My oncologist has recommended chemo for 6 months. After that I don't know what the plan is.
Find chemo O.K. but very tiring.
Getting used to the new reality is the hard part.