Thank you BCC!!

Hi, I don’t know how long it’s been here, as I haven’t been around for a couple of days, but we finally have our own thread!!
After the teething troubles of having a new site, I would like to say ‘Thanks’ to BCC for listening to us, the forum members and making the site more and more user friendly, and taking on board what we have asked for, i.e, the new postings instead of having to search through each individual thread. I have also noticed that they have given more sub-headings for secondaries, as well as a few other new ones.
So I thought I would just bring this to the attention of other triple neg folk in case, like me, you had missed it!
So look forward to being able to talk specifically about our various types of cancer, and giving and getting help, information and moans and encouragement!
best wishes,
Jax

Hello all you triple negitives out there and welcome to our new site! Looking forward to hearing from you all.
Josie

Hello and thanks BCC !!

Looking forward to gaining some advice and information from fellow triple negs.
I was dx Sept 08. Taking part in TACT II trial which i am had accelarated epi and now on xeloda tablets. I am 36.

Speak soon !!
x

Another triple neg signing in.I was dx Oct 2006 had lumpectomy,node sampling,fec/tax chemo and rads.Currently NED but never complacent.I am 65.
Love valx

Great to see a triple neg heading at last! Partly due I’m sure to campagning by Jane RA. I am 60 with secondaries to lining of heart and lungs. originally diagnosed 2001 and secondaries Oct 2008. Doing really well on vinorelabine (7th cycle), scan due in a month.
Marmite

I’m seriously considering going to Boston to be treated with Avastan/Abraxane that can’t be given here. Anyone else done this. I’d like to talk to someone who’s been through this. There seems to be a lot on the US boards. Thanks.

Thank you BCC for giving us triple negatives the chance to share our experiences. I had bilateral surgery October last year, finished chemo 4 weeks ago and about to start rads this week. After that I know I will feel ‘up in the air’ and quite isolated as regular check ups only after that. I am sure I am not the only one that feels like this. Rosie where did you find info on Avastan/Abraxane please?
Regards to allxx

Through the Dana Farber cancer institute. This seems to be the most effective Rx at this time.

Hi atlantarosie

Not sure what stage you are at in your cancer experience. Personally I would never consider going abroad for treatment unless I had solid evidence that there was a good chance that it would work. Abraxane, which is a form of taxol dissolved in water using albumin, is not generally used in the UK but is used in advanced breast cancer in the US. Avastin is being used in trials and some patients are getting it with private insurance, and avery few through their local PCT. (In all cases for metastatic breast cancer.)

I’d strongly suggest that you seek advice/second opinion from one of the UK’s top cancer hospitals…Marsden or Christies for example before setting off for Boston.

My reading of the research on abraxane is that it causes fewer side effects than taxol and it did in one study improve the progression free period from 16.1 weeks on taxol to 21.9 weeks on abraxane. As far as I know there is no data to show improved overall survival of abraxane over taxol.

The issue of avastin is quite controversial. debsincornwall who posts on the secondaries site gets avastin through her PCT and has politically campaigned for avastin to be made more availabe. You could perhaps pm her. My own view is that the trial evidence for avastin is not sufficiently good to persuade me to campaign for this drug myself. (I was also advised of this by a consultant at the Marsden.)

I am nearly at the end of the standard UK options for treatment of advanced breast cancer…have had AC, taxotere, vinorelbine, xeoloda, carboplatin, gemcitibine, taxol and now vinorelbine for a second time. My triple negative cancer is proving resistant to treatment but fairly slow growing…has only spread to neck and chest area and not to major organs (Though a query on my lungs.)

There are quite a few people on these boards on avastin but I don’t think I have herad of anyone on abraxane…though as you say its quite a usual treatment in the US.

best wishes

Jane

I am at the end of my options with the NHS and as I appear to have an aggresive form…2years from Dx to 2’s liver,lungs I’m going to take this chance. I have nothing to lose …I’m not ready to give up yet. I also used to feel that I would never leave this country for treatment but having come to the end of what the NHS has to offer feel that i have nothing to lose and luckily have insurance that will cover this.I am feeling relatively healthy and will take a chance on this, my alternative with the NHS is, quite sadly, death.

Hi I’m Sarah 40 year old mum of two boys from NZ. Partial mast Jan triple neg grade 3 and started chemo yest x3 FEC x3 Taxotere and then rads. Agreed to go on the worldwide Beatrice trial for Avistan but thankfully was randomized into the control. I got cold feet with the extra med x3 weekly for a year-I sort of figured that the evidence for early breast cancer was not as conclusive and I really just want to start living again without every week or day for that matter thinking of BC. (I know that will be hard to achieve!)
At least being in the control group I get a year of monitoring which I might not have had so diligently.
Thank goodness there’s a triple neg thread.
All the best guys

Hi im Tina 42 years old dx christmas about to start chemo and you guessed it triple neg…delighted to see we now have a place to talk to each other. I ploughed through this site since xmas trying to find info and buddies but never actually joined in. So here i am biting the bullet.Would love to here your stories reguarding chemo hints and tips would be nice. Considering the G.I Jane look before the hair decides to wimp out,decided to have a scarf/hat/hair clipper party with my family and friends,hopefully some time next week, if i feel up to it. Anyway enough of my rambling love to hear from you all, Speak soon xx

Hi all

Diagnosed inflammatory bc triple neg Dec 08, I was 33 at the time. Had FEC but didn’t complete the 6 doses as became very unwell - septic shock and very neutropenic. Mastectomy April 08 followed by radiotherapy. Just getting back to work and finding it very tiring. Just had a check bone scan, ct brain, chest and abdo. Everything all clear now. Getting married in 4 months and appreciate life a lot more than before.

P.S even managed to get a strapless wedding dress to accomodate the prothesis. Whooo hooo

Hi everyone,
i’m triple-neg too, it is good to talk about our probs with the people who understand, i used to think it was good being triple-neg because i did.nt need to bother about taking tablets, i did’nt realise at the time how rotten it was having neg dx.
i was first dx nearly 18yrs ago now with er- pr-neg, onc say’s they would regard it as her- also as tumour path was the same, i suppose that is neither here nor there, having any cancer is bad luck, but i got 16yrs before it came back. at the time they couldn’t make their mind up wether to treat as recurrance or new primary, but decided on the latter, not that it made any difference to me as it was a stage 3 grade 3 basal cell type, so i was pretty devasted as i thought i had beaten it, especially after 16yrs. i’m 48yrs so still young enough, although i don,t feel it, i feel as though i’m going about with a ton weight on my shoulders, mabe i’m a bit depressed but i feel no-one i know really understands and regards me as a bit of a hypocondriac, so i don’t discuss it with them, i tend to keep my feelings to myself. Sorry for moaning about myself when you are trying to intrduce yourself,i’m sure you will get on ok, chemo is horrible but needs must and you will get through it most people do, it’s all about survival, i have had chemo twice now and a lot of people on these sites have had a lot more, hopefully you will just need the one and through time get your life back on track, it will never be the same but you will get there.
good luck, keep well
love reneex

Hi Lila,
Glad everything is alright for you, that will give you some peace of mind for the time being. Having scans and tests are always the worst, waiting for results, makes you so anxious.
Hope all goes well for you.
Reneex

Must admit I was terrified going for another round of scans again. It just reminded me of all the chemo stuff. Think I cried for the two weeks waiting for the results as I was so scared. I work as a nurse and I think my brain went into overdrive. I have also came across a lot of healthcare professionals who have no idea what being triple negative is all about.

Hi ladies

I too am triple negative. I was dx with agressive IBC in August 2008.
Iv had AC chemo,Taxotare,Carboplatin and Vorelobine…Non of these chemos shrank my tumour,my body just rejected them.I had a second opinion at The Royal marsden and surgery was my only option because the tumor was over 15cm…
I had a mastectomy in Feb with 22 lymph nodes removed. 19 nodes contained cancer and because of the failed chemo the surgeon has told me that cancer is still within my body.She told me im likely to get a secondary cancer in my organs within the next 2 years and there will be no cure for me only treatment to prolong my life.
I am having a CT scan on Tuesday before my Rads begin. I have found a lump just above my coller bone and one in my neck,my doctor has checked me out for infection but im all clear, i fear the cancer has spread.Can breast cancer spread into the neck lymph nodes? If so how do they go about getting rid of them,chemo,surgery,Rads???
Any one have any information i would be greatful.
I will update you on my scan next week…

Thinking of you all

Shell
xxxxx

Hi Shell,
Sorry to hear you are having a rough time. If it’s any consolation, I too was told there was hardly any chance of cancer not returning within 2 years, as large triple neg tumour, with most of my lymph nodes affected. Well, it is 2 years today that I had my mastectomy!!! So far no further spread, although LOADS of false alarms.I have had major spinal problems, I think due to Taxotere, as I had completely clear bone scan pre-treatment, but discs just collapsing all over the place. So much pain and fear of secondaries; high calcium levels and high liver function tests have meant non-stop MRI’s, CT and bone scans. I would love to have a day when I don’t think about cancer, but sad to say that’s not the case, especially now I am quite disabled.
But, we are celebrating the 2 year anniversary, putting 2 fingers up to the consultant who was quite insensitive when I asked for reconstruction, and he told me it wasn’t worth it with my prognosis!
Still haven’t had recon, and probably won’t now as I am sick of the sight of hospitals! I know there is some dispute as to whether the 2 year thing is from diagnosis, surgery or end of treatment, but I don’t care. I am just so glad to celebrate today!
Best wishes,
Jax

Hi Ladies
Just found this thread I too am triple negative dx in Oct 08,having 4fec/4 taxotere, mx, then rads. Have had 5 lots of chemo so far.

Shell - on diagnosis it was found I had cancer in my lymph node above my collar bone, I was told by my onc that it is not possible to remove this one by surgery as close to muscle etc. Told that chemo plus rads usually gets rid of it.

pp

Hi Jax
So glad your celebrating your 2 years without cancer and hope you have many more cancer free years.

PP- thanks for the advice on the nodes on the neck/coller bone.Im due to have my Rads soon so hopfully that will eradicate them.

Speak to you all soon

Shell
xxxxxx