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new to site - looking for inspiration

27 REPLIES 27
busylizzie
Member

Re: new to site - looking for inspiration

hi Anne
I feel so much for you and your husband, I was dx last October and now four and half months later my husband an I are in a much better place than we were then. I am new to this site but it has already made be feel better about the future.

Hope your treatment goes well,
Take care Liz x

Kay123
Member

Re: new to site - looking for inspiration

Hi Anne (and others)

So sorry to hear of your secondaries dx but hopefully you will find lots of support from this forum - I certainly have. I have liver mets (discovered May/June last year) so am a relative newbie particularly when compared to Polly's lady. Have never ever dared to hope for 18 years! Thank you so much for posting Polly.

I finished Taxol and Avastin in December - had 18 sessions, weekly for 3 weeks and then a week off (Avastin fortnightly). It wasn't easy towards the end but did shrink my tumours well. Now on Megace (a hormonal treatment). I certainly found it easier, Anne, to cope once treatment started and was shown to be working, as did my hubby. And the first sessions were relatively ok - certainly easier than the FEC chemo I had after my primary dx.

Do ask if you have any questions - there are lots of very knowledgeable ladies here!

Kay xx

AnneS
Member

Re: new to site - looking for inspiration

Thanks so much Allie,
It does help not to feel alone - although I wish none of us had to go through any of this!

take care,
Anne

allie4
Member

Re: new to site - looking for inspiration

Hi Anne,
So sorry that you have had a secondaries dx, you're so young. There are lots of ladies on here who have been around a long while with secondaries so we can all hope we can keep going as long too. Good luck with the taxol & avastin. Please feel you can have a post on this board, we will always try to help.
Take care
allie

AnneS
Member

Re: new to site - looking for inspiration

Hi all,
I am just reeling from the news that I received last night telling me that I now have secondaries in my lung and in lymph nodes around my neck. It was just lovely to read that positive story about the lady of 54 still living with mets after 18 years!
I was first diagnosed in Dec 2002 at 32, small primary recurrence last March and just when we'd hoped 2008 would be health-problem-free it comes back to haunt us! My husband is in bits and finding it very hard to accept but I'm just keeping it together at the moment as I intend to fight as much as I possibly can. I'm lucky to be symptom-free at the moment as it's been picked up from a routine (but only one I've had) CT scan. I know I've now got to let go my hope of ever having a family. We were about to start trying just as I was first diagnosed and have tried unsuccessfully since. I try to think it's for the best but it's not easy.
I hope to start Taxol and Avastin in the next couple of weeks.

Take care everyone

Love AnneS

dm1968
Member

Re: new to site - looking for inspiration

Polly

What a lovely story to post and what hope you have given to us all I think. I am 39 with 2 children under 4, so to hear that she was dx at 36 with secondaries and small children and is still going strong now, is such an inspiration to me, to know that there is a chance.

Thank you and say Hello to her.

Love
Dawn
x

ForumMember
Member

Re: new to site - looking for inspiration

Polly

Thank you Thank you Thank you

That is truly amazing!!!!

I have a 6-month baby boy and I want to be around for a long time to come. This gives me such hope too!

Love Anne xx

busylizzie
Member

Re: new to site - looking for inspiration

to polly
thats amazing thank you for sharing that with me. It gives so much hope can't wait to tell my husband. good Luck with you treatment.
liz x

pollym
Member

Re: new to site - looking for inspiration

hello bizzylizzie,

I met a woman with a very inspirational story today when I was having my herceptin. She was 54 and originally had breast cancer when she was 31, she had twins of only 12 months old at the time, she had a mast and chemo, rads. Five years later at only 36 it had spread to her bones and liver, she is triple neg and has only had chemo, in all that time, 18 years, her mets have been controlled although she has had chemo a couple of times. She was there today as she has had a cough and they feared it had spread to her lungs. But her news was good and her scans were all clear. As she said to me she feared she would never see her babies grow up but now she has 10 grandchildren!

I am glad that there are lots of people on here who can support you and know what you are going through, hope you ladies dont mind me dropping in as I have no personal experience of secondary breast cancer, however, I think this woman's story is too positive for me not to tell it to others who are going through a similar experience.

Polly x

busylizzie
Member

Re: new to site - looking for inspiration

hi again
my kids are oliver 14, lydia 11 and beth 9. Were going to lake district in easter hols. i dont know why but too scared to fly at moment especially somewhere as far as florida i thinks its still to early for me but who knows! thinking of driving to belgium in summer hols. I agree about keeping busy and having things to look forward to, can't relax yet til i've had my scan.

Anne I'm in crosby and am also being treated by team from clatterbridge but at the marina dagleish centre in fazakerley. Will come along to live chat beginning to think your all mad already!!

Take care Liz x

ForumMember
Member

Re: new to site - looking for inspiration

Hello busylizzie

I too am sorry that you've had to join this club - I've been in it since Aug 2007 (bone mets) - I'd had 7 clear years prior to that.

If you join LiveChat on Tuesday, you will think that we are mad. We've started calling Bisphosphonates, BishBosh (blame Angee's Mum for that one!) so, that along with 'cabbage' ............................???????
Come along - the hour flies past!! We do cover the serious concerns but we also have a bit of a joke too - it is just 'nice' to be with people who you know are feeling exactly the same as you.

Whereabouts in Merseyside are you? I'm in Ellesmere Port and have my treatment at Countess Of Chester - carried out by team from Clatterbridge.

Take care

Love Anne xx

dm1968
Member

Re: new to site - looking for inspiration

Hi Buyslizzie

Just to let you know that you should book a holiday and give yourself and family something to focus on and look forward to if you can. We are actually going to Florida on 30 March, booked in january. Wanted to do something special and having something to look forward too. My youngest at 15 months is a bit too young, but I want to make lots of pictures and video footage for memories and am already planning a holiday in October halfterm, as daughter starts full time school in September. Also going to France in summer hols to visit my dad too. Need to keep myself busy and have stuff to look forward to. Got great travel insurance too.

How old are you children if you dont mind me asking.

Glad we have helped you in some way and that you have found it useful. When in November is your birthday, I have my Dads, sisters, nephews, and sons birthday that month. Busy time (was my grans too before she died a few years ago). Also my cousins but don't really know them (like you need to know all this really). Just babbling now, think my 2.5 glasses of wine made me typehappy!!! LOL.

Take care, shame about the ritz, but another time.

Love
Dawn
xx

busylizzie
Member

Re: new to site - looking for inspiration

hi all
I'm OK toaday, it's been 9 days since last chemo which is usually when i start to feel better and its great knowing its not all starting again soon. I've been trying to work out when my hair might start to grow, does it grow quick?

Yes I will be the big 40 this year but not until November did have a holiday booked to Florida so on top of telling kids i had cabbage (our family name for it) also had to tell them the hol was cancelled, but will most definately be doing something special.

Would love to meet you at Ritz but live in Merseyside, maybe next time though, what a great idea i hope you have a great day.

Its nice but very sad to hear from other people my age and I can tell i will get loads of support from this site. Reading through the threads today it was like people had took words from my mouth, I'd even wrote one phrase word for word in my diary, you all do really understand what me and my family are going through.

I will join the tuesday live chat.

Not yet at a new normal but now know there is such a thing abit of inner peace would be nice.

thanks to you all bye for now x

angee
Member

Re: new to site - looking for inspiration

I'm weeks away from 40 too, busylizzie and as dm1968 said, come join us at The Ritz (if they'll have us!) xxx

dm1968
Member

Re: new to site - looking for inspiration

Hi Busylizzie

So seen as we were born in the same year, when is your birthday then, or am I gonna be slightly older than you. Mine is 8 March, so not long to go - OHG - I cannot believe will be the big 40 soon but least are gonna go out celebrating. Never thought would see it though last July, so that is something to celebrate too.

What are you going to be doing, hope you have something planned too.

Resection is where chop bits of your liver off, if there are no more than 2 (I think) tumours and not very big, Ablation is RFA (radiofrequency ablation) which is where they use radiofrequency to burn the tumours. Someone correct me if this is wrong. Again depends on where, how big and how many as to whether this treatment can be done.

I hope you are OK today. Let us know how you are and keep posting. Have you seen the arrangements to meet up at the Ritz in London one day soon - would be great if you fancied coming along. Whereabouts are you? I am in essex, near Lakeside shopping centre.

Take care
Love
Dawn
x

angee
Member

Re: new to site - looking for inspiration

Hi Busylizzie,

I was diagnosed with bone mets in Oct 2007 (primary in 2004) and having found great support on this site previously, came here straight away. The other women here are fantastic and are all an inspiration in so many different ways. Me and dm1968 are both the same age and sounds as though you are too. I amazed by how young some of us are. Why don't you join the Tuesday Live Chat. It is a really good way to chat to others in the same position. What I like is that I can talk freely about what is happening to me and my body as though it is normal, if you know what I mean.

I echo others in saying no one wants to join this club but welcome non the less!

Angee xx

Jacksy
Member

Re: new to site - looking for inspiration

Hi Busylizzie,
Me too! Diagnosed with primary, and secondaries in liver last March.
It's been a hell of a year but I've had WLE (lumpectomy), chemo (FEC and Taxol) and now I'm on herceptin and tamoxifen as my tumour is hormone-receptive and HER2 positive. I've just started a straight three months without needing to see the oncologist, so I'm trying to get life back to some kind of normal, back at work, etc.
There is masses of info on this site. If you can't see a current thread that answers your questions you can search past discussions.
You must be a young thing if you're the same age as Dawn! Does this mean you have a special birthday this year?! I hope you feel able to plan something to celebrate it.
Love Jacquie x

ForumMember
Member

Re: new to site - looking for inspiration

Hello
I was diagnosed with liver lung mets and also small ones in my neck and abdomen in March last year. This was the first I knew about having breast cancer. This came as a huge shock and I too kept asking why I coudn't have surgery I think I thought that if I do it would help get rid of it somehow.

I had 6 lots of FEC chemo last year and I am now on Arimidex and Zoladex injections and so far so good. I wasn't expected to last more than 4 months but here I am and I feeel about 90% better than I did this time last year.

I think there are still lots of options that I can have but at the moment the current treatment is working well.

So good luck it does get better. This year I am much more on top of things and I feel that I can now live with this THING.

love Caroline

ForumMember
Member

Re: new to site - looking for inspiration

Hi Liz

Welcome from me as well. I was first diagnosed in 1995 with primary and then 2004 with extensive mets to liver and spine (fracture like Belinda). Have been on Xeloda since 2006 and am on about my 24th cycle (I think!).

All I can say is I'm glad I've got it now and not back in 1995 because I'm pretty sure I wouldn't still be here.

Resection means that if your liver involvement is only in one area they can perform surgery on that particular area as the liver will grow back again.

I hear time and again that GPs miss the vital signs of mets but am working with one of our local surgeries relating to this!

Pinkdove

Pinkdove

busylizzie
Member

Re: new to site - looking for inspiration

hi and thankyou for your replies,
I definately (like everyone else) didn't want to join your club but now that I have Its nice to be welcomed. I didn't have surgery mrsblue, this took me so long to get my head around and I kept having to ask the breast care nurse if she could explain it just one more time. To Dawn (dm1968) is that the year you were born if so we have something else in common. Not sure what you mean by resection or ablation as its still a mystery to me, my problems started in july 07 too, with severe back ache which of course i now know to be bone mets, doctor insisted 3 times it was a pulled muscle i didn't think it was cancer for one minute but knew it wasn't a pulled musce i think he thought I was imagining or exagerating it. Its great to hear from someone 5 years down the line and to hear of different types of treatment.
Thanks again I'm really pleased I was told about this site It might keep me sane, Liz x

Louise_BCC
Member

Re: new to site - looking for inspiration

Hi all

I have posted this on behalf of Terry.

Regards
Louise

Hi Busy Lizzie,

My wife was in the same position 2 years ago, but she had extensive bone and liver tumours. Chemo is over and Xeloda too, now just on Femara.

Lots to treat you out there, so don´t worry.

Terry

Kay123
Member

Re: new to site - looking for inspiration

Hi busylizzie

So sorry that you've had to join this "exclusive group" but hopefully you will get a lot of support here. I was lucky to have nearly 5 years after primary dx but then found it had spread to my liver last May/June. It's very hard initially to take everything in but it (honestly!) does get easier. It is also easier when you are feeling well - you will still be recovering from the chemo.

As Dawn says, there are many ladies on this forum who have had mets for some considerable time. Everyone does react differently to the treatments but there are also many treatment options available. I finished chemo in December and am now on Megace (a hormonal treatment) - so life can get back to some form of normality for a while. It isn't normal life as it was pre dx but it is a form of normality.

Take care and do ask any questions you have - there are also many very knowledgeable ladies here!

Kay xx

belinda
Member

Re: new to site - looking for inspiration

Hi busylizzie, I'm so sorry you have to join us.
I'm at least 5 years down the line and have probably had breast cancer for much longer as I was diagnosed (breast and bone mets) by fracture.
There's much support here. Take Care. Belinda.xx
PS..for Mrs Blue, I haven't had surgery.

blondie
Member

Re: new to site - looking for inspiration

Hi Busylizzy
Sorry you are with us but welcome all the same.
Thinking of you
Blondie

dm1968
Member

Re: new to site - looking for inspiration

Hi Busylizzie

Sorry you had to join us. I was diagnosed in July 07 with bc and had MRI scan, bone scan and ct scan and like you, told a week later had already spread to my liver. I finished chemo on 21 Nov and started herceptin on 20 December and am due my 4th lot next Tuesday. It is a complete shock and my whole world fell apart last July and didn't think I would be around to see my little boys first birthday or christmas come to that. But am still here and think am doing OK.

Had second opinion on my liver to see if could have resection or ablation, but not an option as quite a few lesions on my liver, but the specialist did say I had "a spectacular response to chemo". Which was very good news. My onc is seeing me again in 3 months and think next scan will not be for 6 months after last, so probably in June.

There are so many ladies on here that have bone and liver mets, and are 5 years down the line, so don't give up hope. We are all different though and respond differently to our treatments, but just have to look forward and take each day/month at a time really.

I have had no surgery though as my onc said not an option due to secondaries.

Let us know how you are and keep posting, as you will get lots of support on here, and we all laugh and cry together.

Take care
Love
Dawn
x

mrsblue
Member

Re: new to site - looking for inspiration

Hi Busylizzie, welcome to the club we'd rather not belong to! I too had secondary diagnosis 3 weeks after primary. Did you have breast surgery ?

ForumMember
Member

Re: new to site - looking for inspiration

Hi busylizzie

Welcome to the forums, I am sorry to read that you have recently been diagnosed with secondaries and just wanted to let you know of some of the support we can offer which may be helpful to you

We have a one hour secondary 'Live chat' on Tuesday evenings where you can 'chat' to others who are experiencing similar feelings and treatments so will have an understanding of any concerns you have. You are also welcome to contact our confidential helpline on 0808 800 6000 for a chat to one of our specialist nurses for one to one support, advice and information and a 'listening ear'.

The following links will take you to booklets written by Breast Cancer Care which contain information about a secondary diagnosis, treatments and support available and others which are specifically about secondary bone and liver cancer:

http://www.breastcancercare.org.uk/docs/sbc_sept_2007_web_final_0.pdf

http://www.breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_bone_0.pdf

http://www.breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_liver_0.pdf

The helpline is open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes

Lucy

busylizzie
Member

new to site - looking for inspiration

hi
just new to this site. i was diagnosed with breast cancer in october 2007 after the initial shock i was told the next week, after scans, it had already spread to bone and very slightly to liver. have just finished chemo and i'm on herceptin haven't had scan yet to see were i'm at but just glad chemo is over. is their anyone in a similar position to me but further down the line who can give me inspiration!