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Positive stories really needed

31 REPLIES 31
fleegle
Member

Re: Positive stories really needed

Hi Ju

Sorry to miss you at the meeting on wednesday. Kelly said you were not so good, so hopefully you are feeling better now.

We have decided to go to the dogs and will be making a date at the next meeting in February. Obviously if your not too good after the treatment we can organise the trip out when your at your best, which may be just before the next treatment.

Julie won't be fit for anything till March so the nite out won't be till then or even April.

Karen is going to keep me in touch with Julie's progress and we will hopefully do the day out in February, with a quick visit next week (to the hosp). I am on leave this coming week, nothing planned only timeout from the boring routine of work....... If you need anything especially this week then just ask. Both Karen and Julie have my numbers if you need them

Take care and hope you are feeling on the up.

Sian.

Hope tyo see you soon

wendyjj
Member

Re: Positive stories really needed

Hi,

I've not posted for a long time, but this site was a great help to me when I was initially diagnosed with BC in Sept 2004. Diagnosed with Liver Mets in July 2005.

Since my secondaries diagnosis I've had a course of Vinorelbine with Herceptin and then went onto Zeloda with Herceptin. I've had a couple of breaks from Herceptin due to low LVEF and have been on a long break from Zeloda because of my sore feet!!

My last 3 CT scans have not detected any of my liver lesions. My Onc. (Dr Welch at Christie Hospital, Manchester) is really pleased with my progress.

I have 2 children aged 8 and 6, and don't intend going anywhere fast!! I have a fab husband and we live live to the full, enjoying LOTS of holidays!! We're off to Orlando for the 3rd time in 4 weeks!!

When you're told you have Mets you think it's the end of the world and that you won't live for long. But after 2 years you learn to look forward and believe you may live longer than you thought. They're always trialling new drugs and as we keep being told, hopefully Cancer will be treated as a Chronic Illness rather than a death sentence.

bimbo119
Member

Re: Positive stories really needed

Hiya Sian,

Had first tax yesterday so far not too bad although my legs are aching big time and the steriods are keeping me up till all hours. No feeling sick though which is great and have the last lot of steroids tonight so hopefully will get some sleep soon.

Should be at the meeting on the 16th but will wait and see. Am hoping to be back at work asap so will see Julie there. Lunch out sounds great as does the dogs but again will have to see how things go. Got my next treatment on the 1st of Feb.

My mum is over looking after Connor and my dad has called in to see how I am and Im sat on the computer - bit rude so better go. Will keep you updated on here over the weekend.

Ju xx

fleegle
Member

Re: Positive stories really needed

Hi Ju

We have a meeting on Wednesday 16th and I hope you will be able to come. I am not sure if you will as if I remember you have you taxotere on 15th. It would be gr8 to see you but understand if you can't. let me know if I can do anything!

Julie is having her op at the end of the month so Karen and I plan to come to shrewsbury to visit. We would love you to join us and I will let you know the date once we have arranged it. The plan will be to see her in hospital and then in the near future go for lunch. Fancy a trip out?

Also at the meeting we hope to arrange a dog racing night out with our subs. it will be either in March or April, dependant on Easter and what's available. let me know if you fancy it

Good luck with the drugs if I don't see you next week

Sian

GrannyScouse
Member

Re: Positive stories really needed

Ju and everyone else

I take my hat off to all of you, especially you young mums. It's enough that we're in this exclusive club, but to have young children to deal with, especially at times when we're feeling weak and tired with the chemo etc, well, I can't imagine how difficult that must be at times for you.

Mind you, as me and my family have always said, every cloud has a silver lining, and there are certainly many of those still to discover. We make sure we find at least one each day.

Best wishes xx

belinda
Member

Re: Positive stories really needed

In case anyone else might find them useful, http://www.bcna.org.au/images/stories/pdf/messages_advanced_cancer.pdf
I've found reading the accounts of these women living with mets help me.
Belinda..x

Lolag
Member

Re: Positive stories really needed

Hi Bimbo

Sorry to hear about your diagnosis. I know exactly how you feel. I was diagnosed in November with mets to bones, liver and lungs too and my consultant gave me only 'months'. I have a two-year-old daughter and I refuse to believe I won't be around to see her at least start school. So I ignore what he said and concentrate on all the stories I hear of women who have been told the same years ago and are still here.

A woman I know through an American website has been living with the same mets as us for almost 8 years. She hasn't done anything special - she has just taken the treatment options available to her and been lucky. She feels well and can do most things. When I feel helpless I think of her.

Love

Lola x

janiw
Member

Re: Positive stories really needed

yes its just another way of putting it think we are all at least A level standard on our disease now !

Have a good year jan

blondie
Member

Re: Positive stories really needed

Thanks for that Jan, that makes it much clearer. So far my Herceptin is holding but it is great to know that there is something else out there to try - makes me feel less desperate. I wonder if any of the 66 had been moved onto something else (eg Avastin or Tykerb) once Herceptin stopped holding it and have been put back onto Herceptin + Omnitarg?

I was first diagnosed in 94 (before they told you things like HER2 etc) but I haven't heard of H2+ve. I presume H2 is another way of writing HER2 (?) but what is ve?

Sorry about all the questions - you would think that I would know all there is to know about my disease by now but this forum never ceases to surprise and inform. It is amazing that you are getting a 20/30% reduction and are holding it at that - well done you.

All the best for the New Year and I will be looking out for your posts.
Blondie

janiw
Member

Re: Positive stories really needed

hi Blondie sorry new to this! I had been on herceptin from septo6 as part of my initial treatment for H2+ve diagnosed june 05. Then they found liver mets on routine scan for a tiny ovarian cyst they were keeping a eye on. Six weeks later after a 2nd CT scan [still on Herceptin] my 3 tumours had grown so I was elligible for the omnitarg trial so I now have both IV three weekly for as long as it works hopefully a long time! Aparrently some tumours have gone but you still remain on treatment and some stablise ie.20% + reduction it is an extremely small trial at the moment [66world wide] but my research nurse says it is working so well they are going to re-open it hence this blog so that herceptin failures can look out for it. Hope that helps.jan

blondie
Member

Re: Positive stories really needed

Hi Janiw
This sounds very interesting and I am glad it is working for you. It is always great to hear of new treatments.

When you say 'it is for women who have not progressed on Herceptin alone' - what do you mean? I take it that is people who haven't been on Herceptin before or for whom Herceptin has held/shrunk their tumours. What grounds would there be for not just prescribing just Herceptin alone, ie what is the criteria for choosing people for the trial drug?

Sorry if I have got the wrong end of the stick here.

Blondie

janiw
Member

Re: Positive stories really needed

hi my positive comment is that I am on a newish trial at Christie Manchester [I have H2+ liver mets] which is having good results for me and others I am now stable having had around about 20/30% reduction in my two areas of cancer. this trial has ? re opened as there was only 66 of us world wide so keep an eye ot for it. It is for women who have not progressed on Herceptin alone It involves having Herceptin and the trial drug Omnitarg three weekly IV ,CT scans echo-cardiograms etc for as long as it works for you .The good news is that the side effects seem to be minimal lack of energy,dry flaky nails/occasional diarrhoea not at all like chemo as this is targeted.
Ive' been on this trial since May this year when the second phase opened this seem good news for the future

blondie
Member

Re: Positive stories really needed

Hi Ju
Of course I don't mind you asking - it was just after my son's wedding in Feb 03. I had been feeling very tired (unnaturally so) and asked my GP if she could do something for me - she thought I might be anaemic - unfortunately it was secondaries to liver and bone (but I am not sure that I ever had the bone bit and now they are not sure either). I had chemo (only lasted until Dec 03) and then Taxotere and Herceptin and I have been on Herceptin ever since and doing well.

Blondie

bimbo119
Member

Re: Positive stories really needed

Hiya Blondie

70th treatment - how have you managed having that much treatment, not sure if I could cope always having treatment, your one very strong (perhaps stubborn he he!!!) lady but well done you. How long ago where you found to have secondaries? Hope you dont mind me asking.

Ju

blondie
Member

Re: Positive stories really needed

Hi all and a Happy New Year
I have liver secondaries (but not visible at last scan) an am on Herceptin - I have just had my 70th treatment. Thought you might like to know.

blondie

fleegle
Member

Re: Positive stories really needed

Ju

Glad to hear you had good christmas, didn't like to ask. Sorry to hear about your grandad, very sad especially at this time of year.

Sounds very good about taxotere, still don't know anything about it. But go with the drugs, as there are always advances every day with cancer treatment / cures.

I know ther length of time they ahve given you is crap, but like I said LLinda was given a bad prognosis and she's 20 years on. So keep positive, I believe that has a lot to do with your wellbeing.

Hope th back ache goes, may be you're overdoing it!! as for the wish list I'd milk it also. Why not even if you get 20 years at least you get to see the world.

Can't wait for your 30th party......will help with the food if you need some help.

Christmas was fairly quiet, had great curry on xmas day - recommend it. New Year's eve worked till 8pm then had a party, got to bed around 3 so still tired. But who cares. let the neighbours know we were here, with 26 rockets and 2 large fireworks!

Speak soon, if you need anything still here to help.

Sian

bimbo119
Member

Re: Positive stories really needed

Hello Karen & Sian

Great to hear from you both. How was your christmas and new year?

Im sorry i didnt get to the last meeting. I was due to have lumpectomy on that wednesday so wouldnt have been there but when i went for pre-op day before i found out the scan results so decided to go xmas shopping with my mum instead - as you do!

We have managed to have a good christmas although OH's grandad was admitted to hospital on saturday , not sure he has long left so have been spending a lot of time up there (COPD).

Wasnt having any symptoms from spread although have started with a really bad back, nearly passed out today with the pain but got a couple of nurofen down me and a couple of hours kip and feel much better.

I have been advised that I will be starting Taxotere second week of Jan but havent heard anything yet so will do some ringing around at work tomorrow.

Sian, thats great news about your sister hopefully i will be the same. Secondaries in the lung are believed to grow at a much slower rate according to onc. so im not too worried about them, its the multiple metasteses in the liver which are a bit of a worry but a friend of mine has secondaries and had Taxotere, she started off with 15 spots and went for CT scan after first treatment, they couldnt find them.

I know there is no "cure" regardless whether your primary or secondary but when they start telling you, you have between 9 months and 3 years its, well pretty crap. OH has asked me to write a wish list of all the things i would like to do before i die so I plan on milking that as much as i can he he he he he!!!!!

Thank you to everyone who has replied, you've all been a massive help and no doubt I shall be calling upon you again soon.

Better go and put little 'um to bed.

Ju x

fleegle
Member

Re: Positive stories really needed

Hi Julia

Had a chat with Helen today. She is not on taxotere but is on other chemotherapy drugs. So far her tumours have either shrunk or disappeared. So she is full of life and very positive. She says to keep positive and take the opportunities as they are offered.

Also she went to see her oncologist. He has told her she is classed as terminal, but when he sat and explained what that meant he told her that the word terminal means there is no cure at present, but its manageable / controllable. He also says once diagnosed with cancer they never say you're "cured".

I hope this is some help to you.

Hope you have a very positive New Year.

Sian

RMW26
Member

Re: Positive stories really needed

Fleegle it is very risky to put any personal details on this website as they can be read by ANYONE browsing the WWW.

fleegle
Member

Re: Positive stories really needed

Julia

Didnt realise I cannot give you contact numbers etc, so if you want to chat or contact me, call Julie or Karen as they have my mobile and home phone numbers.

Take care,

Sian

fleegle
Member

Re: Positive stories really needed

Hi Julia.
I do not know what to say after reading your posting. I am sorry for what's happened and if there is anything I can do please ask. Your a very brave and inspirational young woman and my thoughts & prayers are with you and your family at this time.

On a positive note my sister in law had breast cancer and has had metastasis in bone, lung and I think liver, and that was 20 years ago. She is still alive and living life to the full. She has some health problems after all the years of treatment but she's still here. I don't know what the treatments all were, but they obviously helped.

Also a very brave young woman called Helen I know has had breast cancer for the second time and she has recently been diagnosed with liver mets and her treatment is going very well, the chemo is helping her and she's very positive about the outcome. So just keep fighting and living life to the full.

What ever the treatment you have like everyone will tell you your body always tells you what it needs and you will have to respond to the way you feel on a day by day basis. But if you need anything let me know. I do not have any information about the drug Taxotere but could get it if you need some.

I hope I see you at the next meeting.

Betty, Pink Ribbons is aware of what's happening and will try to get on line to talk to you. In the mean time If I can do anything for you I will, just let me know.
Speak soon,

Sian

kaz42
Member

Re: Positive stories really needed

Hi Julia,

Just read your last posting, what can I say, I'm so very sorry to hear your diagnosis. We all missed you at the last pink ribbon meeting and those of us who are aware of the situation are thinking of you and sending you heaps of love.

Sian apparently knows someone in a similar situation as yours and is going to email you later today with some positive feedback from this person.

You are a very strong and positive person but like Terry (the last posting) said listen to your body and rest when you need to.

We are all thinking of you and your family, if we can do anything please ask.

Take care
sending you a massive hug

Karen
xxxxxxxxxxxx

Louise_BCC
Member

Re: Positive stories really needed

Hi All

I have posted this on behalf of Terry

Regards

Louise

Facilitator
Breast Cancer Care

Hi Bimbo,

Your story is quite like my wife´s. She had BC initially in 1998 aged 35, just Chemo, lumpectomy and followed by Tamoxifen for 5 years.

April 2006 it came back in a BIG way, she fell down a staircase and damaged her coccyx ( spelling !! ) what we did not know is that this was already damaged by bone cancer. They found multiple bone mets, Lung mets and 75% of her liver was affected.

Anyway to cut a long story short we were told she had 9 months, that's all. She started on Taxotere with Xeloda ( low dose). She had a total of 11 sessions of the Taxoter. She lost her hair at about 8 weeks, initially felt a bit nauseous but that got better. She was tired and slept a lot. At the end of the Taxotere she went on to a full dose of Xeloda for 9 months.

After all that the cancer has stayed stable and week by week she seems to be getting stronger, walking better
( wheelchair initially ) Her hair has grown back ( curly !! she had straight hair before ).

Whilst they say the cancer is not in remission, all the treatment has kept the brakes on and is still doing so.

In short, Taxotere is initially hard but the results are worth it in our opinion. Worth discussing anti sickness medication at the start of the Taxotere, remember you will be tired so if your body tells you to rest do just that, when you feel OK just go for it, you will get through it OK and I hope that it works for you like it did for my wife.

Take care
Terry

Kay123
Member

Re: Positive stories really needed

Hi Ju

Really sorry to hear your news but good for you to be sounding so determined so early on. "Living life to the full" is definitely my philosophy as well on the basis that if my life is going to be shorter than I would like, I must make sure I make the most of it!! I was diagnosed with a solitary big met in the liver (over 5cm) in May this year after nearly 5 years "clear".

I've had so much support from this forum - there are some fantastic people out there. I also now tend to disregard a lot of the statistics that are often given - not because they aren't necessarily correct but they are averages and we are all individuals. I don't think it can be predicted how any one of us will react to any one treatment - and there are so many different treatments being offered anyway! There are several people posting on this forum who have been given very short "life expectancies" but have exceeded them - hopefully one of them may post and give you more detail.

Haven't had Taxotere (have had Taxol which is similar but don't know whether all the side effects are the same) - lots of people have though and I believe it is pretty effective.

Good luck - and let us know how you are getting on.

Love Kay x

india1
Member

Re: Positive stories really needed

Hi Ju,

Sorry you have to join us, but I know you'll find loads of support here, just as I have. I was diagnosed with lung mets in April, at the dame time as my primary was found and was obviosly completely devestated. My little boy is 3, and I want to be with him as long as possible. After the initial shock, we have got back to some kind of normallity-I haven't had chemo yet as disease seems to be stable on herceptin and tamoxifen, but I need to consider taxotere when next scans come back.

I have found it really difficult accepting help and admitting that I'm not ok all the time, but am beginning to realise that it's better to take all the help offered-from family or professionals.

Anyway, better go, as I'm at work, take care and let us know how you get on.

Nicky

dm1968
Member

Re: Positive stories really needed

Hi Ju

Sorry to hear your news. I was dx with bc on July 16 this year and then told 10 days later after scans had spread to my liver. Complete shock and turned my whole world upside down. I have a 4 year old daugher and a 1 year old son, and like you want to be there to see them grow up and don't wanna be going anywhere else right now. I am a lot older than you though, bit of a later starter should I say, as I am 39. But my babies mean the world to me and I didn't bring them into the world to leave them so soon.

I finished my chemo on 21st Nov, had 3 x FEC and 3 x Taxotere. Flew through the FEC no probs apart from hair loss. But the tax did knock me for six. Ended up in hospital after 2nd lot as got a bad cough/cold and as immune system battered and I didn't read the signs, left it too late. My last dose was reduced by 20% and although my cough came back, I realised early and got antibiotics from the docs, The only advice I can give you is listen to your body. Rest as much as you can, easier said than done with little ones, but the first 5-7 days after are the worst, but the second week is the one to keep alert with your temp and how you feel!!!

But listen, I've got through it all so far, and if I can do it, anyone can believe me. I have found myself to be more stronger once I started my treatment and although tax was hard for me, I managed to get through it. I am pretty positive and strong most of the time, although have my emotional times, like this week on Tues and Wed where I was a bit of a mess. But I do try to stay focused. Very hard at times.

I had my first Herceptin yesterday and so far so good. Wasn't sure would give it to me as full of cold, but went ahead so am happy knowing my treatment is back on track again now.

Anyway, you take care and remember to let us know how you are. These forums have been my lifeline and we laugh and cry together.

Take care
Love
Dawn
x

belinda
Member

Re: Positive stories really needed

Ju I'm sorry to read your news..I also haven't had Tax yet but know friends who've had good responses from it. This is a very supportive place..I've been living with mets (bone) since 2003..Good Luck and Love..Belinda..xx

allie4
Member

Re: Positive stories really needed

Hi Ju,
I'm ever so sorry to hear your news. I'm 41 and found BC in June and found numerous liver mets in July this year. I've just finished weekly FE which I started in August. I don't plan to go anywhere soon either. The girls on this board have given me great hope and support. since I was diagnosed I've cried a lot too but I've also laughed too. Haven't had Tax yet but will probably in my future, but lots of the girls here have had it.
Take care
Allie

EamesK
Member

Re: Positive stories really needed

Hi There

I was dx with secondaries in liver, bones in June and have gone through chemo (Taxotere) which I had a huge response to along with herceptin. I am also on a drugs trial for the bone mets which acts as a polyfilla for the damage done there. It has resulted in my liver tumors shrinking to 0.5cm and barely noticable. Ialso had about seven tumors in the breast.

I got through the chemo with only minor side effects - just make sure you get as much help as you need on your off days - mines lasted only about 4 days after the chemo.

As much as I want to live to a ripe old age, my oncologist has not said any timeline for me as yet as long as all my drugs keep working.

What I would say is take all the drugs on offer no matter how scary the side effects may seem and take each day at a time.

Kate xx

ForumMember
Member

Re: Positive stories really needed

Hi Ju

Really sorry to read your post and just want to say hi to you.

I've had liver and bone mets (in my spine) since 2004 and feel well at the moment as I'm back on chemo (have been for just over a year now). Had some ups and downs (mainly downs in the early days while getting to grips with it) but I've been living with cancer for the past 12.5 years now and like you, I've got a lovely husband and son. My son was 7 when I was first diagnosed and I thought I'd never see him grow up - he's now just turned 20 and in his second year at uni and I'm determined to see him graduate in 2009 and I will do if I have anything to do with it!

We've had loads of tears as well and the fear is still there and I don't think it'll ever go away (not like it did when I had primary diagnosis after a period of time) but although our prognosis isn't as good I still want to enjoy life and I do but that's because I'm feeling well at the moment which makes a huge difference in how you see and deal with things.

You hang on in there Ju - I've had 3 years so far and there are other people on this site who are even further down than me - good luck with your chemo in the New Year.

Take care.

Pinkdove
x

ForumMember
Member

Re: Positive stories really needed

Hi Ju
I am sorry to read about your recent diagnosis, if you need more support at the moment please feel free to call our helpline on 0808 800 6000. We also hold a secondary live chat on Tuesday evenings which gives users the chance to share their concerns in a closed session for an hour each week, the session runs from 8.30-9.30pm and you may find this helpful.

The helpline opens at 9am-5pm Mon-Fri and Sat 9am-2pm.

Best wishes
Lucy

bimbo119
Member

Positive stories really needed

Hi Ladies,

On Tuesday I found out that i have bone, liver and lung mets. I was originally diagnosed in June 06 with breast cancer, aged 26 had left mastectomy, chemo (ECMF) and rads. Found another lump a couple of weeks ago in right mastectomy and recon (had it done prophylactically!), had ultrasound with FNA - cancer is back. Consultant did a CT scan to make sure it wasnt any where else surprise, surprise it was. A couple of spots on my bones, lungs and the liver has multiple metastases measuring 1-2cm. So aged 28, with an amazing husband and a gorgeous 3 year old little boy, I dont want to be going anywhere in a rush! There's too much for me to see - starting school, playing footy, grandkids etc etc.

Saw oncologist today and am starting Taxotere in the New Year and he has told me Ive got 9 months to 3 or so years providing the chemo works 3 years is achievable, if I get to 30 Im having a major party!!

But what I could really do with is hearing/reading how some of you ladies have got on with Tax and that you are living to a ripe old age! Hubby and I had a good old cry about it tonight but dont plan on wasting any more time moaning about it - got to live life to the full.

All the stories that I have read so far have really helped.

Ju