newbie, triple neg, bewildered

To keep information about Triple Negative Breast Cancer together and easier to access.
Kiwijanelle
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Beatrice

Postby Kiwijanelle » Thu Jun 18, 2009 6:34 pm

Hi vespa
glad you got some good info from your onc, sounds good.
the trial for triple negs with avastin is the beatrice trial. I'm on the trial and so is chicknz, however we are both in the control group - so no avastin for us!
This bummed me out at the time, but now is good cos i get great followup - same as trial patients who got drug. It's meant a few extra scans and things (heart mainly and 6 weekly blood tests for the year) which is part of the trial protocol, but generally no biggie.
They do however seem to want lots of blood - although think this is standard with any chemo really.

The other thing to maybe keep in mind is that after chemo you will probably need some time to recover before contemplating more surgery. Although it will be hard without boobs (I'm currently minus one! and figuring out my reconstruction strategy) , you'll probably cope much better with the surgery once you've had more recovery time from chemo. But then it all depends on how you react to chemo, and it's very individual.
I finished my chemo in feb, and cannot believe how much better i'm feeling now, I had rads after chemo, finished that in April, my only long lasting side effect now is fatigue!

Good luck, hope all goes well with your chemo, i had FEC too, my hair fell out a few days before my second lot of FEC.

janelle
:hugs:
Diagnosed Sept 08, RB Mastectomy ALND sept 08 - Triple Negative
chemo 3 FEC, 9 taxol. 25 RADS all done - YIPPEE

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Postby janalex » Wed Jun 17, 2009 5:36 pm

I'm so glad they're putting you in overnight for the first treatment Ginny, that would have made the world of difference to my experience (my 80 year old parents were looking after me and I was very sick). There was no suggestion of Taxane and I know that the FEC I had is considered a bit outdated in the US & UK. I'm thin and looked like a size 6 after the chemo -it's good to have a little weight in reserve before you start treatment (so my nursie friends tell me).

I know people who had no trouble at all with the chemo for triple neg. You may find that the trial here has already been done in the US so it may not be as risky as it seems. It sounds to me that you are being well cared for by your doctors; I hope all goes as well as it can for you and remember we're all still walking around, enjoying our lives again. :biggrin:
I lie awake with the sound of the sea calling to me.... (Voices In The Sky by Moody Blues)

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Postby vespa » Wed Jun 17, 2009 5:11 pm

Well I just had my first visit to the oncologist and he was amazing, just fantastic. Hubby and I were both very impressed. He was really very compassionate and caring. I am not sure though that I will have him every time as I am a public patient and I think it will be luck of the draw who I get on any given day. Having said that, he is apparently a world leader in triple negs so I think it was not luck that I got him today. Everyone I spoke to there was awesome.
Anyway, bottom line is 6 cycles of 3-wkly chemo, first three of the reddy/orange stuff (I didnt write it down- any ideas??!!) and second 3 cycles of Taxane(?). I am staying in the hospital overnight for the first one (next Wednesday), mostly because the onc said that it can be hard, and they like to look after you so you're ok for the next ones, as in if you are at home and its shocking then you will be terrified of the next time, whereas if you're in hospital they can look after you more and make it as nice as possible. This comforts me but also scares the s%$t out of me at the same time!
Onc said I WILL lose my hair - no ifs or buts. ALL OVER. Okay brightside is no armpit or leg hair. He said it should take 2 or 3 weeks to fall out. I think I will definitely shave it before then (head that is).
I have an appointment for genetic testing, if I have the gene then instead of radiation after the chemo I will have a mastectomy and reconstruction. If not then a course of radiation.
I also have an appointment for a heart test I think because the chemo drug can affect it if its not right?
Total information overload!!!
The other we discussed was a clinical trial of avastin for triple negs. I have no idea what to do about this??? I would be happy to do it (there are some side effects but what doesn't have them) as I figure it could help me and so many others but one of the things that bothered me about it was the following paragraph "it is recommended that breast reconstruction surgery is postponed until at least 3 months after the last cycle of bevacizumab has been administered". The cycles take 12 months, so if I had a mastectomy after my chemo I would have to wait until like September next year before I could have a reconstruction??! I will call and get this clarified I think. I don't think I could cope emotionally with no boobs for that long, especially when I'm assuming I could have implants at same time as mastectomy. I feel a bit selfish thinking like this. But also I might not even get into the group that has the drug, its 50/50.

Anyway, I am sick of thinking of it all, I get like that after appointments, I just want to go blah blah whatever, who cares. I think if I keep thinking of it too much I will crawl into a ball and just scream and cry. Sometimes I do this anyway!!!

Thanks to all who responded to my other post about what to ask the onc - he pretty much covered everything anyway. I did ask about weight gain and he said that it wasnt teh actual chemo drugs that will make me fat, mostly comfort eating and snacking cos you feel nauseous. It was hilarious actually, as part of teh discussion he said at one point that whilst I wasn't obese, I wasnt the slenderest girl in the world!!! Hubby was a bit offended on my behalf - he thinks I'm slim - bless him!!!

Ginny.xx

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Postby janalex » Fri Jun 12, 2009 9:39 am

I must add that I only completed one course of FEC, when I was meant to have six (I have other health problems that compounded the side-effects). This made me more nervous when reading the [b]recurrence[b] statistics (the survival statistics sound quite good to me), until I deduced - using my naive logic - that it wouldn't take as long for it to come back for me so my high recurrence period was probably year 2 not my current year 3.

You can tell I was a public servant for 20 years! Stats beautifully explained to suit my own needs. :hi5:

It's all very complicated, and the raw stats exclude a lot of factors that make a huge difference to your personal outcome.

Your confidence will come back.

:hugs:
I lie awake with the sound of the sea calling to me.... (Voices In The Sky by Moody Blues)

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Postby yowyow » Thu Jun 11, 2009 8:10 am

Hi Ginny, the girls have given you some great sites to check out

I also felt like you reading all the negative info on TNeg

I now look at it this way.... Once we do chemo/rads .. that's it yep
as much as it would be great to have some sort of insurance like
some type of ongoing treatment for a year like er+/pr+ her2+ have -
who would want to do 5 years of hormonal treatment - or a year of herc
I read here so often about horrible, cruel side effects from hormonals - sounds yuk yuk yuk and
having to go back every 3 weeks for herc for a year.

I suppose its easier for me to look at it this way now I am 3 years out
as I was sh%#t scared when I starting doing a bit of research on Tneg when chemo finished.

I do worry about it coming back as chemo would be my only option
but there is now so much research and many trials on Tneg, Some showing good results
- latest findings on PARP trials are very promising

Research and trial have shown chemo (in most cases) works better on hormone neg's
some say once we make the 8 year mark we are cured
and recurrance % begin to drop after the 3 year mark.

Its great re no positive nodes for you - stats can be scary but no nodes puts you up
there with a great % rate.
Nav
every day without laughter is a wasted day !!!!


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Tri Neg here too

Postby dmayes » Thu Jun 11, 2009 4:31 am

Hi Ginny,

Welcome to the very elite TriNeg goup - I am 41 and was dx in March this year. I am half way through chemo - and doing fabulously if I must say! There is a great US site if no one has alrady told you http://www.tnbcfoundation.org/tnbc/forum/ This site has great research, hints and tips, and general support for Triple Negative BC (hence the name). I hope to see you there soon.

Great attitude too Janalex - and Ginny that is half the battle (so many people heave told me). Get as much info as you can - and although the BRCA testing is great info - it is not that bad. If you are positive (and many are not - so please dont worry - worry itself is not good for you) then is just means you may wish to consider some other options - that is all.

If you are into research - may I suggest a book "AntiCancer: A new way of life" Dr Servan-Schreiber - it is a written by a doc who got brain cancer and decided to pull together a stack of research and the eastern way of life. It suggest the foods we should eat and how to extend/improve your life. It is great - and I found that sometimes I cried whilst reading - it made me realise that in a way we are blessed with this disease - as we soon find out what we are about and what we need in our lifes. I have lost some friends - as they couldnt deal with mx - but I have made so many more. I find I now really connect with people, and they ask how I am doing with a genuine concern. I find more pleasure in each day and as they say - Don't sweat the small stuff. I love Janalex's attitude - show me the path report, then we'll see.

Make a file - make sure you get copies of all your reports/tests etc. If you are not feeling comfortable with recommendation - get a second opinion. Ask lots of questions - you cant make decision without knowing all the info.

Fell free to ask my any - though only halfway I have learnt alot and am always researching/reading/asking. I suggest going to the TNBC site - good info for us over there.

Take care and helaing energy coming your way,
Love Deb
Dx 13th March (black Friday) with BC. Lumpectomy/node removal on 18th March.
IDC, Stage IIa, Grade3, ER-, PR-, HER2-. Onc apt on Apr 29th (Scared).

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Postby janalex » Tue Jun 09, 2009 4:12 pm

Dear Ginny,

I had triple negative grade 3 stage 2 in 2007. In fact exactly two years ago I was going through my chemo.

My surgeon always thinks the worst if I have any signs that might mean a recurrence, but I'm still here and still cancer free. After the last scare I've made a deal with myself. Until I see pathology evidence (in black & white so to speak) confirming my doctors' gloomy predictions, I won't believe them.

5% recurrence rate means 95% survival rate. There's a lot to be said for a glass half full! :champers:
I lie awake with the sound of the sea calling to me.... (Voices In The Sky by Moody Blues)

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Postby tanya » Tue Jun 09, 2009 12:10 am

Hi Ginny

They have all said it so well. BC sux big time, you will go through so many emotions throughout the journey. Some days anger, sadness, resentment, happiness and sometimes all these emotions in one day, one hour!! But come here often to talk, to cry, to scream and to be angry and mostly for information. It is easier if you know what lies ahead so you can be prepared. Being prepared is like taking back some control.


I was diagnosed at 36 in 2007. I am not triple neg, so cant help there.

Good luck.

Tanya

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Postby Debs » Mon Jun 08, 2009 8:48 pm

Hi Ginny,

After reading the last post by Debbie its hard to add anything as i relate to it all. I too am triple neg and have found out I am brca1. I was diagnosed last year in April. I felt I was walking on a treadmill and i JUST HAD TO KEEP GOING EVEN THOUGH THERE WERE many times that I wanted to get off. Now reflecting back I almost feel it was a bad dream and I have come to the light at the end of the tunnel. There is not a part of last years reactions, breakdowns and crying I regret as I feel I needed to go through it and feel what was happening. What i did not expect was the wonderful amazing feeling I have now everyday about just being here and enjoying all that life has to offer. This forum was my lifeline, my connection with others that really understood. I logged on EVERYDAY I was going through treatment and every time someone said something positive it helped me through. You will get through it and at times it will be hard, but you will as I and others have done. let us know how you are going as there are many wonderful people on this site.
BC dx April 2008. triple negative, 1.2 cm, no nodes. Had FEC x 6.

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Postby newbie » Mon Jun 08, 2009 7:56 pm

Hi Ginny,
Roughly 12 months ago I was where you are now, I was diagnosed on 25 June 2008. I did all the 'what did I do wrong', 'why did I get this' & 'why me'. After a discussion with my sister-in-law who through babbly of tears said 'I wish it was me that got it and not you' my reply to her was I got it because I could handle it and you couldn't. And it had taken many weeks to get that conclussion we do nothing wrong or right to get this disease it just happens. All we need to do is fight the bloody thing and come out the other side to realise that life goes on and we need to make plans along the way. I too was triple negative stage 3, no node involvement. I had a mastectomy on 7 July, started chemo 18 Aug, turned 40 on 11 Sept, finished chemo 1 Dec (just in time to eat good food for christmas), had breat reconstruction 10 Feb, went back to work full-time hours 9 March and then flew to Italy for 3 weeks on 13 April. SO as you can see I have had a very full 12 months. I will not say that I had an easy chemo treatment but I was very careful with what I ate, where I ate, who I was around etc. I now do not have alot of memories of the chemo treatment I have to try and remember details, I think that is what 'chemo brain' may be all about our bodies way of sheltering us from it all. I feel great now knowing that I came through my 12 months, I have a head of curls which I have never had before and am enjoying trying to style my new short hair, I previoulsy had long hair. It will not be an easy journey for you but I took the attitude that it was just another challenge in my life and I would come out the other end a stronger person for the journey. Please allow yourself to have 'those' days where you don't want to do anything as you will have them but you will also have days where the sun is shining, friends have come to visit to see your baldy head and share a cup of tea. These are the days I remember about chemo, the good stuff, having treatment allowed me a reason to stop and see the good friends and family around me that we may sometimes take for granted. I view my time out from work as something that needed to happen to re-evaluate my priorities and what I needed to do. It also gave me a great opportunity to study Italian, read books, watch afternoon TV, take naps when ever I wanted to and not feel guilty that the washing wasn't done.
I'm sorry that I have gone on a bit here but I think it's because my '1st anniversary' is coming up and I'm having a reflective time looking back on what I have achieved in a year.
My husband found this site when I was first diagnosed and even though I do not post very often I certainly come back to read frequently and continue to learn from the wonderful people on this forum.
Thank you to all the ladies who have contributed over the year I have been a 'member' and know that you have helped so many women.
Regards,
Debbie :grouphug:

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Postby Lisa8 » Mon Jun 08, 2009 12:51 pm

Hi Ginny,

I am so sorry you had to join the club. I am triple negative too, 16 months from diagnosis now aged 32. Life is great for me now (and I do have mutated genes...2 of them!!) and life will be for you again too.

The first few weeks after diagnosis/before chemo is very scary, but once you have had your first chemo cycle and you know what to expect it will get easier.

Make sure you do use the forum to ask any questions through your treatment...the girls on here are very knowlegable and a fantastic support. We do understand!!

Lisa :hugs:

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hello

Postby Kiwijanelle » Sun Jun 07, 2009 9:19 pm

Hi Vespa
I'm another triple neg - have just finished my chemo and rads (about same time as Karene8).
Ask lots of questions, I got so much great info out of this site when i was doing chemo and rads that helped me to get through it all, and mostly to have a group of fab women to talk to who really understood what i was going through.

The good news for triple negs is that there is some evidence that shows that chemo works better for us. Yippee!

All the very very best
love
janelle
:hugs:
Diagnosed Sept 08, RB Mastectomy ALND sept 08 - Triple Negative
chemo 3 FEC, 9 taxol. 25 RADS all done - YIPPEE

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Postby Jollyjac » Sun Jun 07, 2009 8:02 pm

Hi Vespa,
It's a very scary unfamiliar world when first diagnosed,
I think of having Chemo as my insurance policy - a small amount of pain now for long term gain.
Good luck
Jackie
Dx feb 09, aged 40 triple pos, multifocal 2.1cm, 1.5 cm IDC 2+ nodes
AC x4 Taxol x12 Herceptin Arimidex 1 yr - ceased due to osteoporosis
Zometa x 4, No hormone therapy

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Postby Janette » Sun Jun 07, 2009 7:31 pm

Ginny,
It's a bit of an emotional roller coaster ride for while. Allow yourself to have the ups and downs that go with it. You will get through. :hugs:
Janette


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vespa
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Postby vespa » Sun Jun 07, 2009 7:10 pm

Thank you all for your replies. I feel better today, although as you know every now and then the emotion of it all catches up with you.

Ginny.xx
Diagnosed 7 May 2009 @ 34 yrs - lumpectomy and SNB 22 May 2009 - 1.9cm triple neg nodes all clear - FEC x 3/Taxotere x 3 - 30 x rads.


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