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OH CR * P - BACK FROM ONC!

14 REPLIES 14
Guest user
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Re: OH CR * P - BACK FROM ONC!

Hey Mel

I found out I was Her2+ last appt too and had the biggest cry of my life last week, just the whole horribliest of it all! Fed up with hearing bad news. but, my oncologist said, it used to be a bad thing and now its a good thing as now we can treat it and treat it well!! so, here's to tackling it full on with all the research and meds we have now! its there and at least we have the science to know why our cancer is more aggressive than others -and not only do they know why, but they know how to treat it.

I've got a small tumour but its spread quickly and is grade 3 and is in my lymph nodes so having 4AC and 4Taxol, then surgery, then rads -got my last AC on Friday, having a port inserted tomorrow because of Herceptin for a year -figured thats sensible to save my veins. But, hate the idea of having a port, feel like a proper 'patient' know which is sh*t.

This is all very horrible -we've all got to go through this experience and all of us would wish we were doing something different .... but we have no choice, sh*t eh?????

anyway -let us know how you get on

hannah
xxx

Guest user
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Re: OH CR * P - BACK FROM ONC!

Glad to hear its shrinking Ali - mine to yippeee
Soz to hear about the symptoms for the sore mouth try cold fresh pineapple !!!
Keep us updated.
Take care
Mel
XX

Guest user
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Re: OH CR * P - BACK FROM ONC!

Hi Jules
Just had Taxotere #2 on Friday.....was fine all weekend. Then ....oh dear...Monday was really sh*t, aches pains, couldn't get out of bed...really cruddy mouth. Still not right today and have a really bad sore throat - but no nausea.
Don't care as long as it's shrinking - and it is...yay!!!
Will keep you posted.
Ali
x

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Re: OH CR * P - BACK FROM ONC!

I always thought Triple neg was the worse thing, but realise now perhaps not so bad. I did read that a study was done in America on low fat diet. 2 groups of ladies with BC. 1 group was told to eat normally but was given healthy guidance and the other group was put on a low fat diet. the results were that the hormone negative bunch of the low fat diet group showed a 42% reduction in recurrence compared to the hormone receptive bunch of the low fat diet who showed 24% reduction.

Thought I would share that, as us hormone neg ladies often feel we get the worse deal.

Roadrunner, I like the stats for the FEC & Tax that you showed, it certainly does give hope. tax is reassuringly expensive and was until last year only licenced for the use of secondaries, so good to know they are using the big guns on us.

Bestie, think you are just ahead of me in your chemo and therefore due to start Tax. Am I mistaken? If not let us know how you get on, I hear it's nasty. I have found FEC a bit of a doddle.

Luck to all

Jules

Guest user
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Re: OH CR * P - BACK FROM ONC!

Dear Mel
Sorry your news was not all good. When I was told I had a triple negative tumour, I immediately 'googled' triple negative only to read....'Triple Negative Patients have a very poor prognosis'. I understand your panic - as mine was the same but I was panicking because I COULDN'T have hormones or Herceptin...... you see what I have learned now is that the stats and internet scare you stupid and my BCN (a wise woman indeed) told me there are no 'good' cancers or 'bad' cancers and each person is as individual as their treatment and their reactions.
Your chemo/surgery team will be there for you 110% and take heart from the ladies on here who have the Herceptin experience. I was also told that Herceptin brings down the risk to the same as us Triple Neg people.

Thinking of you hun. Love and hugs
Ali

anne5
Member

Re: OH CR * P - BACK FROM ONC!

Dear Mel

I am sorry about your bad news. But great news about the shrinkage
I have no information on HER2 - as awaiting my results. Thought I would do the research when I knew more.

Hope your bloods were ok - so that you can have chemo this week.

I am going back for surgery friday as they did not get it all following wle and snb. I too have lymph node involvement so am now having mastectomy with imm recon and total aux. clearance. I will also need ct and mri to see if any secondaries.

I start my chemo end of Oct.

Everytime I see my surgeon I feel that all does is give me bad news - i started with a grade 1 with probably no lymph node invlovement to grade 3 with involvement. This rollercoster ride seems never ending and actually I would like to get off now!!!!!!!!

Just so pleased I found this site - everyone has just been so brillant

Take Care, Love

Anne

RoadRunner
Member

Re: OH CR * P - BACK FROM ONC!

Hi Mel,

I too had a grade three tumour, lymph nodes (3/16) and am HER2+. I have just finished 4 x FEC & 4 x Tax, still to come - rads/herceptin/tamoxifen.

I looked up a lot of research when first dx. The FEC/Tax route, which is specifically aimed at those of us with lymph node involvement, is looking good. The five year results (only ones I can find so far) show 78% still disease free and 90% still alive. Also the herceptin results for primary cancer show 90% still disease free after four years. It is my understanding that taking herceptin levels the playing field so to speak - it puts us back to the same risk as HER2 negative people.

Who knows what happens after 10 years, but I think the results are going to be much better than the onc suggests, given all this new treatment that wasn't available a few years ago.

Also you can reduce your risk of recurrence by exercising & eating plenty of fruit & vegetables.

I'm just doing everything I can & keeping everything crossed! I have every intention of seeing my children marry & have children of their own.

RR

Guest user
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Re: OH CR * P - BACK FROM ONC!

Hi Mel,

As Kelly says, I am sure that you will feel a bit better as the feeling of being pi**ed off wanes. The good news to focus on is the shrinkage - that's excellent.

Margaret x

princess18
Member

Re: OH CR * P - BACK FROM ONC!

Hi Mel,

when I first found out I am HER2 + I was totally devastated. I knew little about this, except that it meant that my tumour was more aggressive and rapidly growing. I thought that I was doomed and that being told I was HER2 + was tantamount to a death sentence.

However, once I'd finally stopped crying I made some phonecalls and did some research. I rang the BCC helpline and they were awesome, I also spoke to my bc nurse and my trials nurse. I was reassurred that Herceptin was like my 'insurance policy' and by having it for 1 year it would counteract the fact that I had a more aggressive tumour. Approx 25% of tumours are HER2 +. I was so scared at first but now I am grateful that there is one more thing that I can have to get rid of the little blighter and hopefully stop it coming back.

Many women campaigned for a long time to make Herceptin available to all who needed it and for this I will be eternally grateful. I know that it means we will be going to hosp every 3 weeks for another year than we had planned but I suppose its a small price to pay. I know many triple neg ladies who 'wish' they were in our position.

I know you are gutted right now and understandably pi**ed off, I was exactly the same!! I'm confident that once you get your head round things you will soon start to feel better about being HER2 +,

Take care,

Kelly
-x-

Guest user
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Re: OH CR * P - BACK FROM ONC!

Thanks All for your encouraging words!

I sort of knew in my own mind how agressive it was but to actually hear it is a little more real...

hopefully bloods are ok and can have my third fec tomorrow. if not ah well what will be will be.

So I will be half way through fec soon.

Love to all you lovley supportive ladies.

Mel
x

Guest user
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Re: OH CR * P - BACK FROM ONC!

Dawn you give people hope. I can only think of my next mammogram and I haven't even got the dreaded BC as yet. Convinced that they will find something though - always am - hope it's not a self-fulfilling prophesy. You people out there make me feel so humble. I am worrying without actually having anything to worry about and you are all so full of life and so positive. It makes me feel that if I have got a problem they maybe I am not going to die within the next year.

dawnhc
Member

Re: OH CR * P - BACK FROM ONC!

Hi mel,

So glad you got some good news- the fact that the tumour is shrinking shows that the chemo is the right one for you. It sounds as if the HER2 news was quite a blow for you - but then an 8-10cm tumour sounds pretty aggressive to me anyway. Mine were all large ones and I was HER2+. At original dx HER2 wasnt know about 17 yrs ago - but they seem pretty certain that all my tumours have been HER2+ certainly the more recent ones tested as such. But I have been defying statistics for all of 17 yrs now - o.k I have had recurrences but you have no other choice than to get on with it. I have had bone mets for 5 yrs now and am on herceptin permanently but life is good :). I just want to wish you well with it all and hope you get really good results.

Dawnhc

Guest user
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Re: OH CR * P - BACK FROM ONC!

Mel

As you say there is shrinkage and thats got to be a good sign, like you i am having chemo first followed by surgery rads and who knows. I don't know my HER status as they don't test on core biopsies here, prefer to wait till they have the full tumour.

Remember that stats are just that stats. I work with them on a daily basis and i am constantly amazed about how many different ways the same set can be interpreted. The way i look at it is i am young (relatively) and healthy (well apart from this minor bc thing) and there will be a lot of people in any stats groups with other significant issues.

I can understand you are feeling pissed off as sometimes this thing never seems to give us a break, it's god to sound off. Hope you feel a bit better soon.

Take care

Love

Lesley x

Moderator
Community Manager

Re: OH CR * P - BACK FROM ONC!

Hi Mel

If you feel it would help to talk this over with one of our helpliners this please do feel free to give them a call.The helpline team can offer you further support and a 'listening ear' which may help you during this difficult time. The line opens at 9am and is open 9am-5pm Monday to Friday and Saturday 9am-2pm on 0808 800 6000

Best wishes
Sam
Moderator
Breast Cancer Care

Guest user
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OH CR * P - BACK FROM ONC!

Hi All,

Really really FED UP!!!!

Just go5 back from oncologist - who I must say was fantastic honest and patient with me.... Thanks Dr Scoble.
But he gave me some good news and some CR * P news.

I do have some goo shrinkage - good news!
BUT
I am HER2 positive the type of C is very aggressive. He is going to combine treatments so that I have FEC x 3 then Taxotere x 4 then op then rads the one year of herceptin!!! He was 70% sure that I have lymph node involvement an is almost sure sure that I have no secoundaries - At the Moment - which he did stress...not to wory me even more...

I asked him what are my chances he said 40% of non re-occurrence after 10years!!! I cant even think past tomorrow!!
I DONT KNOW IF TO CRY OR SCREAM. I think i'll opt for both, but hey at least theres shrinkage!

I'll find out about my bloods later on today - fingers crossed..

sorry to winge but what else?
I suppose I better pick myself up and start that climb up the rollercoaster!!!

Take care to all

Love
Mel
x