To cut a long short… Breast cancer Her 2 has been a part of my life for 21 years …I have had operations, 8 types chemos. Oral and intro.
4 lots of rad. 6 types hormone therapy…I feel like if it’s out there and suitable for me …I have had it.
Over the last 11 years we manage my cancer it sits on the chest wall and throughout my right breast and is now presenting on the surface as red marks but it has not broken through the skin…I have advanced. regional,invasive ductal carcinoma…what a mouth full…I have recurrent, recurrences. Every year I know I will require more treatment.
So where do I fit…I do not have secondaries…so should I be posting here… I am not a survivor …in one sence as I am still having treatment…but in another I am…I’m still here.
The information on women like me is very thin on the ground as is people who have secondaries… 5% of women have secondaries …2% of that 5% have recurrences…was told this at the Marsden.
Are there any new treatments that are not chemo based. At 60 I’m not sure if I fancy any more chemo…it is taking me longer to get over the last lot (Abraxane) which fineshed in April 2011.
Thanks for letting me ramble on…keep well an smile alot x
Hi, I am sorry, I realy have nothing to say about your treatment-- I just had to read the post because of your wonderful username.
Realy made me smile.
I hope somebody can come along with useful suggestions, I am just a newbie and no good to you at all, except to say thankyou for giving me a bit of a chuckle
Cheers oldandlumpy…but GSOH
Nice of you to post…I used to post under Onetit.
Newby or not it was lovely to hear from you. Good luck with your treatments.It is just another one of lifes paths.
As you were the only post I can only assume that knowone knows where I should post.
Thanks oldandlumpy.
Regards onelesstit x
I agree great user name I too am quite new being diag in April I wish I knew the answer for you one thing you amaze me to have been through what you have & still going, the fact you’ve not got secondries is a bonus.
being through what you’ve had to endure I wonder if it would be a benefit to get your GP to refere you to the London holistic Hospital (think thats what its called) there they can give you some intergrated therapy which if nothing else will help boost you, its alot for anyone to have gone through over all these years.
All the best to you keep on keeping on
hugs
Mekala x
Hi, it may sound like a mouthful but what a dreadful condition to have!
Your treatment record seems horrendous.
Would the helpline be able to offer any support or match you with anyone else with your diagnosis?
I’m sure it’s very lonely when you don’t fit into any particular ‘camp’!!! Can the Marsden help with any support groups?
Really do hope you find support soon and that your treatment gives you a break of freedom for some respite at least…
Wx
Hiya onelesstit 
I remember joking with you a few years ago when you were onetit, and there was a flatone and I wanted to be notits rofl!
You say in your post …Breast cancer Her 2 has been a part of my life for 21 years… Do you mean you are her2 positive? You beat me by a year in being dx and when you joined bcpals I thought it was so good to find someone else who had been kicking bc around for so long but mine has steadied a bit since 2004 - when I had had bone mets for 2yrs, and in '04 was put on herceptin which helped to stabilise everything. But you really are having a dreadful time. Do you remember JaneRA? - she was struggling with regional disease all over her chest wall & her neck but it never moved into her organs. In the States I think they regarded that as Stage 4. I think if you are comfortable posting here in 2ndaries then you should do so - I don’t think any of us would mind. I don’t know of any other treatments unless as I asked at the beginning, you are her2+++ and then there are a number of newer drugs being trialled with combinations that go with herceptin.
Nice to see you around again.
Dawn
xx
Welsh girl
Thanks for your comments.
I will try the helpline and see if I can hook up with my diagnosis chums.
I have had dealing with the Marsden…re trials. They do have support groups but they are based in London. The groups are not focused in my cancer diagnosis area. Thanks for the thought.
Although support groups and forums do what they say on the packet…it is a lonely path we all tread…its nice to find hands to hold.
Regards onelesstit x
Hi Mekalar
Thanks for your post .
I will check out the London Holistic Hospital on line …then go and see my GP.
Yes I am relieved it has not developed into secondaries…I must be doing something right.
Good luck to you and thsnks again for answering my post.
Regards onelesstit
Hi Dawn
It’s been along time…how are you keeping?
Changed my name only because when the web page was updated it would not let me use onetit as it kept saying the name was already taken …it was …but it was me. never mind . I like my new one.
Yes I am HER2 pos. I have tried Heceptin in the passed in combination.
I am so glad Herceptin worked for you . I have a girlfriend who is passed her 100th dose and it is still working for her after liver mets.
I do remember JaneRA and read her early diary bloggs avidly…how is she. I heard the USA call what I have Stage 4.
I will from now on post on 2ndaries…thanks for opening the door for me.
Nice to see you are still posting .Take care
onelesstit
Hi onelesstit, not keeping too bad!! bone mets are stable but have a soft tumour mass alongside lower spine and wrapping round the nerves that exit the spine there and causing a lot of pain. It took them ages to find the cause of the pain 'cos assumed it was bones but another mri last year showed it up at last as it had grown :(. Am just trying to see if they will treat it. Are you being treated at the London or Sutton Marsden? and do you still have herceptin or did the stop it 'cos you were getting more recurences. Have you pushed them for any newer trials in combo with herceptin - there seems to be quite a lot of stuff getting good reports. I find it pays to swat up on what you think can help and then make sure you ask to see your consultant to find out if you can try any of them. Sorry to ask so many questions - just ignore them if it’s too much. Almost forgot to answer your question. Sadly Jane died a some time back.
Dawn
xx
Hi Dawn
You are still playing the cruel waiting game …I think that is the worse part of Cancer…the what ifs are hard to bare. Hope you get some treatment sorted soon.
Sad news about Jane…I didn’t know she had died.How bloody unjust.
I am beening treated in Essex…and have only been to the Marsden for a review of treatment and the offer of a new trial. The trial didn’t happen… I stopped takeing Herceptin as you said because of the recurrences.
My onc. is looking into back up combo’s. The problem we face is that chemos…make me so ill before they can do any good…I’ve become over sencitized to them.
I know you have to come with details of whats on offer at appointments… still research keeps my marbels active.
take care x x x x