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Ten years on!

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Re: Ten years on!

Hello Blondie. I note that your posting was in 2013 . Can you please give us an update please. Your story brings much needed hope and encouragement to me who is going through an agonising wait for results of a biopsy, having already had breast cancer twice. well done!
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Re: Ten years on!

Hi Sueone, sorry it has taken me so long to respond to you. My treatment is fine and the last scan showed very few discernible mets in the liver. So I am now solely on Tamoxifen as a tablet once a day and being tested through bloods every three months. I didn't have a mastectomy because the surgeon said it was too late for me so I had hard messages to hear as have you. The mets in my lungs were 'too numerous to count' and there were 7 in my liver, the largest was 10cms. All of these have shrunk or disappeared following the chemo and rads got rid of the lump in y breast partially. I intend to live at least ten years and think you and I should both make a pact that in ten years we will come back on here to celebrate being cured when we were told we were I curable! Keep your chin up. I am double negative so Herceptin etc doesn't work for me but my oncologist said there were new things coming out all the time so we have a long way to go yet.
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Re: Ten years on!

Thanks again for kind words and inspirations
Really keeps me focused being only 24 and being one year fighting.
Wishing all you ladies well.
Its funny most people my age dread growing old but im loooking forward to it ( not wishing the years away mind ) being young has its perks 😉 but still looking forward to the things i would like to do wen im retired etc xx
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Re: Ten years on!

Thanks for posting blondie. I know a lot of the long term ladies don't post much because they are busy living,so I do appreciate you taking the time to post. If I'm right from your posts this will be year eleven with secondaries. Stay well and thank you.xx
Sue. Thanks for letting me know about your 12 year lady on Herceptin it is always good to hear.There seems to be more and more long term secondary ladies out there now, so maybe we can be managed for a long time or in some cases cured.xx Stay well everyone.xx
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Re: Ten years on!

Hi Geordiex, Belinda, elliedog
I have been shamed into posting but thank you for your concern. Just for the record - I live in the UK not the USA so all my thanks to our NHS for keeping me going.
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Re: Ten years on!

for some reason I thought Blondie lived in the USA am I right xx

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Re: Ten years on!

Dear Elliedog, 

                          I was thinking the same too.  I believe Blondie is being treated at the same hospital as myself.  I had mentioned to the counsellor I see at the hospital how she is such an inspiration.  The counsellor did say she thinks, she knows who I am talking about.  Obviously she didn't disclose any information .  I just hope Blondie does post soon if she can.

 

Having mentioned being on herceptin for a long time.  There is apparently someone at my hospital who was very ill with liver Mets and has been on herceptin for 12 years now.

 

Best wishes

 

Sue XX

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Re: Ten years on!

Hi everyone. I was wondering if anyone had heard from Blondie. I noticed from earlier posts that she usually posts this time of year. Her posts have been such a help since I was dx that I was just wondering how she was getting on.xx
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Re: Ten years on!

Hi Katherine

 

I too have the same as you but my first cancer was sole invasive duct stage 3 Tripple Neg.  I took 8 rounds of EC &T, Mast and rads.  Three months later went in to see onc who before she discharged me thought I should have a follow up scan because when I was first diagnosed, I had numerous scans including a CT and it should in my onc's words "small blemish on spleen and nothing to worry about".  Unfortunately the scan showed uo clear spleen but secondary to lungs and liver.  I have an appt with her today to see what can be done to treat as I know cure is out of the question.  How is your treatment going?  Good I pray. 

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Re: Ten years on!

Hi Katherine
Thank you for the reply
I hope you are doing well and treatment is ok too.
Yes there is soo much amazing treatments and future treatments.
So I do feel positive although like you said the dark days are not easy.
But yes I always try to stay strong and be positive and yes I do laugh and joke wen I look at back at things now.
Thank you again for your message hugs and love back.
I too believe that everyday we are getting closer to getting and keeping the upper hand on this disease forever!!!
X
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Re: Ten years on!

Hi Connie889, I was sorry to see your post as you are so young HOWEVER take heart as the treatments they have now, and those they are working on, really make a difference. I was only diagnosed in April but was Stage IV from day one as it had already gone to my liver and lungs but my Oncologist said that these very fast moving cancers are also the ones that often respond best to treatment. I am confident that treatments are coming on line that will eradicate this beast sooner rather than later. I send hugs to you, keep strong and in years to come you will look back and laugh when your remember the dark days you are going through now. Lots of love K
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Re: Ten years on!

Hey blondie
I just want to say
This is amazing news!!!! And has given me the strength I needed.
Im new to the forum so pleaee excuse the long hand.

Im 23 years old and on the 31st jan 2012 I ws diagnosed with bc. I had a left masectomy and scans and on the 4th feb 2013 I was told it had spread to my liver and I had several lesions.

I had 6 course of docetaxel and herceptin introduced on the 2nd course but is still ongoing I also had radiotherapy as a precaution too.
Treatment has been going well little side efffects and scan everytime showed significant reductions!!!

I am awaiting to hear if an op is on the cards to burn the remain lesions.

Your post has really inspired me as I recent gt some results after a pet scan which showed some abnormalities in the middle of the chest and deep with in my left arm which could possibly be cancer.
This is scary as I am young and still finding my path.

You have also given me strength in the fact that (ehich im sorry to hear) that you was really poorly where as apart from having a lump and pain in breast I felt fine but scans have just shown the big c is in my system
I would love to make ten years and beyound and really hope I do.
My oncologist has said she has lots up her sleeve and everyday they are one step closer.

I think its amazing that they are think of stopping herceptin if you choose it but scary. What does you gut say and if you did decide to come of if it reoccurred could you go bavk on???
I dont know you so im only guess but for be just having injections at home and like you said being free from hospital and taking a nice long holiday is bliss
Who knows for me it could be a chance to backpack for a bit as my plan was uni travel 🙂

You and all the lovely ladies on here have been a huge help.

This new years will be a year of fight so I will toast to me making ten year and to you enjoying another 10!!!!

Xxc
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Re: Ten years on!

Hi I was diagnosed with BC in 2001, had a Mastectomy followed by Chemo and Radiotherapy. 5years on Tamoxifen and 2years on femara. Surgeon discharged me in 2011. This summer a hard lump appeared where sternum and ribs meet, but I honestly thought I had strained something doing excercise. My surgeon was on holiday in Sept so I saw another breast Surgeon who told me it was Chest Wall Lymphedema, after waiting SIX weeks to see Lymphedema Nurse she told me quite catergorically that is was NOT Lymphedema.

Made an immediate appt with my original surgeon wh thinks it is a recurrence. Had a CT scan same day and am going for a Bone Scan on wednesday. I am so frightened by this and very concerned by the delay.

 

Sue

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Re: Ten years on!

Hi bazcas

 

Please use this link http://forum.breastcancercare.org.uk/t5/Appointments-and-waiting-for/bd-p/4428 you can find your way around the other areas of the website using the coloured boxes on the home page or at the bottom of each page.

 

Best wishes

Anna

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Re: Ten years on!

Many thanks for your reply , how do I post in the site you suggested.

 

 

Sue

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Re: Ten years on!

Dear bazcas

 

I'm so sorry you find yourself in the waiting room again.  I'm pleased you have already found some support on this site.  As well as the support you will get from fellow members you could also call our helpline for information and support.  They are open from 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000.

 

Very best wishes

 

Janet

BCC Moderator

 

PS You might find more people will see your post if you also post in the section "Appointments and Waiting for test results"

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Re: Ten years on!

Hi I was diagnosed with BC in Feb 2001 and had Mastectomy , Chemo and Radiotherapy followed by 5 years on Tamoxifen and 2 years on Femara. My consultant discharged me in 2011. This summmer I noticed a swelling between sternum and rib but actually thought it was somemthing I had pulled excercising. I went to see a Breast Surgeon in August who diagnosed Chest Wall Lymphedema. After a 6 week wait to see Lymphedema Nurse she told me catergorically it is NOT lymphedema.On Friday I went to see my  original Breast Surgeon who told me he is 90% certain that it is a recurrence. My world collapsed and I am so frightened of the time lapse. He immediately sent me for a CT scan and I am having a Bone Scan on Wednesday, and hopefully the results on Friday. Finding this site has been my mental savouir. I am entering a very scary place but as there is hope for treatment and know I will drag myself up ONCE AGAIN to be the strong person that I am and look to the future.

 

Sue

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Re: Ten years on!

 
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Re: Ten years on!

Hello!

I loved reading about the fact that you are doing so well so long after diagnosis.  I was diagnosed with secondary bone mets in Feb at the same time as my primary diagnosis.  It's all been a very scary road since then.  I have tried using the forum before but only got one reply and it sort of put me off so I thought I had better give it another go as I feel like I would really benefit from some support from women in the same situation.

Anyway, just wanted to say thank you for posting.

S x

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Re: Ten years on!

Hi - my name is (edited) - used to be on here regularly but not been on for quite a few years now.  Just thought I would sign up again as I have missed everyones stories.  I was diagnosed with breast cancer in 2003 and found out it had spread to my bones in 2005.

 

I have secondaries in my spine and hip (had hip replacement) and am on Herceptin and Armidex along with Zometa which is given intravenously every 6 weeks.  I have been living with this now for 8 years and have had no further spread anywhere.  As people have said, Herceptin is a miracle drug and Im thankful my cancer (although very aggressive and the lump was rather big - 5cm - when diagnosed) is very treatable.  

 

When I was first diagnosed, they said the outlook was grim - and here I am still going 10 years later.

 

Never give up.

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Re: Ten years on!

Hi, I have been having Herceptin for nearly two years now, with daily anastrazole. I have joint pain and stiff hands and fingers that is because of the medication. Now having Denosumab four weekly as well and this causes joint pain! On the good side I am two years post diagnosis of secondary BC in lung liver and throughout skeleton so I feel very lucky. Herceptin is a miracle drug for those it works for, good luck and stick with it .
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Re: Ten years on!

I was diagnosed and treated for breast cancer in 2001, initially mastectomy followed by chemo, radiotherapy , followed by 5 years on Tamoxifen.
At the end of last year I was diagnosed with what my oncologist first thought was a new cancer in my ovaries, turned out to be secondaries in ovaries and periteneum.
Had 12 weeks of paclitaxol and started 3 weekly Herceptin in January along with daily dose of Anastrazole.
Since last Herceptin I've noticed an increase in aching joints, stiffness in fingers, pain in bottom of feet, just worried this will get worse with subsequent treatments. Does anyone else get these symptoms ?
Blondes story is so inspiring, she gives hope to all with secondary cancer.

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Re: Ten years on!

Hi Sarah,
sorry for the delay in answering this, I was away.
I did not see the main onc but only one of his minion. He did not seem to know much about it. Unfortunately, still hoping to get more info one way or another.

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Re: Ten years on!

Vercors, I'd be interested to hear whether you found out more about subcutaneous herceptin from your nurse or onc. I researched it and found the trials are only for people without mets. Any info appreciated.
thanks Sarah
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Re: Ten years on!

Thanks so much Belinda!. At the start of this awful journey it is so nice to read so much positive stuff.
Wishing you all the best
PumpkinSue.
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Re: Ten years on!

Bumping up this thread for pumpkinsue.
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Re: Ten years on!

Hi All
Just back from trip to Ipswich to see daughter who is working there at mo. Celebrated 55th Birthday while I was there. Did lots of walking, visting, eating and drinking! Trip to Wales in August, France in September and possible trip to London in October! So 41/2 years on from secondary dx from the start, two lots of chemo, new boob, new hair etc, I feel fantastic. Herceptin indefinately but hopefully sub cut soon, I understand pilot trials going on at mo. Oh and tweaking of boobs due after routine scan and onc says all ok, I've got so much on I'll have to give them dates when I'm available!!
The only problem I have is just lately a few days after Herceptin I have a delicate stomach, good job my daughter knew where the loos were in town!! I think thats enough info!!! I'll mention it at next appt. Has anyone else had this problem and any ideas to help please? I like to get it settled before I go away again!!!
Apart from this I feel great and positive intend to lead an active life style for a long time to come and keep Blondie and the rest of the long term sec ladies company.
Positive cyber hugs to all xx

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Re: Ten years on!

Blondie, Amazing to read how well you are doing and thanks for sharing this with us all. We all need stories of hope and good news to keep us going. Heres to many more good years for you to come xx
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Re: Ten years on!

Blondie,
Thank you so much for sharing your fantastic story of triumph, I also on herceptin for life (secondaries to lungs) this information has given me a massive boost and renewed hope for the long term. Love and light to you sarah xxx
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Re: Ten years on!

I am just about to have biopsy to find out if I am hormone receptive. I can then have Herceotin apparently. Should I question having another drug is there a newer or better one that I should know about Please. Start chemo next Mon with Paclitaxel. One treatment eversaw week for 6 weeks........started knitting and crochet hats in cotton for the summer. Going to Northampton for treatment next Monday morn. If anyone would like to join Knit n chat group.
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Re: Ten years on!

Blondie congratulations on your success with Herceptin. Having read some of the more recent studies about Herceptin, I think you're right in that the main value of Herceptin is now thought to be it's ability to flag up cancerous cells so that the immune system can recognise and attack them (as we all know under normal circumstances the immune system does not recognise cancer cells). It was once thought that Herceptin worked by reducing the number or receptors on the surface of the cancer cell, but research has shown this is not always the case, as cancer cells can actually coat themselves with a substance that prevents the Herceptin reducing the number of receptors .
The main problem with Herceptin though is that it doesn't work for all patients There are some studies which suggest it only works for about 40% of patients, and this is why many Her2 receptive patients go on to have Lapatanib. However, there is a new generation of Herceptin based drugs that have just been approved by the FDA in the US called Kadcyla (they are being trialled here under a Trial name). These drugs will hopefully make Herceptin work for a larger number of patients, and will overcome the ability of Her2 cancer cells to coat themselves. They work by combining Herceptin with a very potent chemotherapy drug and an another agent. The drug works by using Herceptin as a vehicle to locate and transport the chemo drug. Once located the agent releases the chemo directly into the cancer cell. So less damage to healthy cells, and fewer side effects.

Vercors I hadn't heard of subcutaneous Herceptin, but if it can reduce the incidence of heart disease it sounds great. I do think though that Kadcyla is going to replace current Herceptin within the next couple of years, simply because it will be able to treat a greater number of patients.

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Re: Ten years on!

Bumping up this thread for Angela.
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Re: Ten years on!

Thanks, Blondie, for those of us her+ your posts are a real cause for hope. Sometimes the fear overwhelms me, but I try to follow the small horizons theory. It is a good one to live by no matter what.
Quail

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Re: Ten years on!

Hi Alpal
I cant say that I do anything much. I am vegetarian (eat fish though) and that didn't stop me getting cancer! I don't eat much dairy, because I don't like milk or milky drinks etc. I do drink wine but I have never smoked or been overweight. I like to meditate and I have been doing tai chi for years.
I am sorry that I haven't found any elixir of life but I do try to live my life with smaller horizons, by that I mean that I try not to plan too far ahead, and I try to get what joy I can from what is around me. Every experience I have (with the grandchildren, places I visit, times with friends) that is something that can't be taken back. Every month, year I get, I have had that and the disease can't take it back from me. I try to focus on what I have and have had, rather than dwell on what I might not get in years but that is much easier (is it? I don't know) than someone who is in their 30s or 40s with young children.
It is my approach and I can't say that I don't have bad days, as we all do, but it has given me a sort of equilibrium so that I can get on with living and not let the spectre breast cancer destroy my good months and years.
blondie
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Re: Ten years on!

Hi blondie, i am 37 years of age and just been diagnoised with BC and seondaries, a few spots on my bones, am hormone receptive and HER2 positive, and it is such a inspiration to hear ur story, it gives me so much hope, as i have been started on tamaxifen and gonna be scan in 3 months to c is there any change...Is there anything you are doing to help you beat or deal with this, it just so great to hear your story and i hope i can be writing what you are someday...have 3 young children and it can be so scary....I don't seem to be having much luck posting or being to put links on this so hopefully you get this..x
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Re: Ten years on!

Love the long term NED stories and have one more to add... There's a woman 7 years free of new tumour growth on Herceptin in my chemo ward too.
I've just had scans after my 5th cycle of chemo + herceptin, breast tumour & all mets have shrunk - the largest one in the liver by over 75%! So I join you in believing that there is a potential long term for us secondaries girls.
Sarah
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Re: Ten years on!

wow , fantastic to read such a positive story! I am 18 months on from secondary bone mets diagnosis, although i can't have Herceptin, I am on Everolimus. Hope I have got at least another 8.5 years in me!! xxx

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Re: Ten years on!

Wonderful news Blondie. Keep fighting and keep believing. Inspiring news for the rest of us out there who are so scared from this relentous disease. Well done strong girl!
Valia
x x x
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Re: Ten years on!

Wonderful news Blondie. Keep fighting and keep believing. Inspiring news for the rest of us out there who are so scared from this relentous disease. Well done strong girl!
Valia
x x x
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Re: Ten years on!

Hi Blondie,
This is my first post on here - was so inspired by your story. I am about to start Herceptin this week and reading your story has given me much comfort and hope.
Wishing you and everyone on here all the very best for the future x.
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Re: Ten years on!

Vercors
Thanks for that Vercors, I didnt know about the 'not affecting the heart' bit - that will be good news to Lollypop59 and those like her who have had to come off Herceptin because of heart issues.
FudgeinCornwall
I wonder if there is something in what you say re herceptin benefitting your immune system. I too have had vague thoughts about how do manage to avoid colds etc. I went to India and was one of the few not to get tummy upsets (that has got to be a good test for the immune system!!!) I dont think I have ever heard anyone mention this before. Perhaps this should be added to the recent thread on Herceptin side effects to give a bit of balance, and hope.
blondie
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Re: Ten years on!

I was talking about this subcutaneous herceptin with my healthcare at home nurse, she said that this would cut down their jobs by 50%. Not that I am worried for her job. More importantly the subcutaneous herceptin does not damage the heart, which is great news for those who have had side effects.
This is on my to discuss list with onc in April.
Blondie, looking froward to reading more of your yearly good news.

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Re: Ten years on!

Thank you everyone on this thread, especially Blondie for cheering up my day/life/world - I too have recently gone from 'just' BC to a liver secondary spread (although like 'fudgeincornwall' it hasn't been confirmed as the 'blob' on the MRI disappeared after 2 rounds of chemo so we can only assume). I start herceptin in 2 weeks - so, God willing, my journey will begin with the wonderdrug by my side keeping me going............but thankyou I have a glimmer of hope that just maybe all is not lost..........xxx
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Re: Ten years on!

Thank you 3N3 - hope I dont need it, but good to know it may still work if the worst should happen and I need it again xx

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Re: Ten years on!

Yes Moser, I think you would get back on the Herceptin if you should have secondaries, but hopefully the scans are OK and you're well. Once you're put on Herceptin for secondaries they keep you on it as long as it's working and not affecting your heart.

all the best,

3N3 xx

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Re: Ten years on!

Hello,thanks for your replies, no, it did not stop working, I had it as a preventative following regional recurrence as unlike primary, recurrence was Her2 pos. I had 17 cycles. however I wondered if I were to get a secondary dx (I am currently having tests for bone mets-fingers crossed it isn't though) whether would be able to have it again. The trials for and use of the other monoclonal drugs is really useful to know about.

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Re: Ten years on!

hi moser i have been reading the posts on here very encouraging about the herceptin blondie, but with me the herceptin affected my heart on two occasion, so my onc stopped the herceptin and switch to lapatinib(tyverb) i have been on this for 4 months going to hospital for my scan results tomorow, will keep you are updated. hoping this answer your question moser hoping you are keeping well,
lollypop59 xx

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Re: Ten years on!

Moser
I presume you stopped taking the herceptin because it stopped working (?) I was told that there is a drug, that given with Herceptin, makes patients receptive to the herceptin again (presumably, like all drugs it work better for some than others). Unfortunately I didn't catch the name of the drug but I am sure that someone here will know what it is called. There are a couple of new monoclonal drugs on the market now so it is entirely possible that you might be put on those anyway - again I don't know their names. Can anyone help?
blondie
ps I am so pleased that people are feeling encouraged by my post - all the best to you all
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Re: Ten years on!

Much love to you Blondie for showing that we can dare to dream, your inspiring post is just what I needed to read today.
I look forward to another update next year and for many more years to come.
I've read about the sub cut Herceptin but not come across anyone having it, I'll be interested to see how it goes for you if you go down that road.
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Re: Ten years on!

Thank you for an inspiring post Blondie! Do you (or anyone else)happen to know whether if someonre (i.e. me) had herceptin once it could be used again if necessary? I had 17 herceptin following recurrence 4 yesrs ago, so am interested to know this.