Chemo doesn't work

Angelcakes - I don't believe that chemo does not work.  I have met many women who have NOT had a relapse and had chemo.  I have met women who are survivors for 15-20 years and more.  Please be careful what you read on the internet.  You nor I can predict the future, but I can sure tell you that I will do whatever it takes to beat cancer.  The survivors are many so take comfort in that.

Hi Angelcakes, where did you read that chemo only helps 3% of patients? 

If 3% were correct which I don't believe is the case, don't you want to be in that 3%?

We do the best we can with the best info we can gather from reliable areas of the internet and books.

I too know of several survivors years out from tnbc, there is no proof you will relapse, we all respond differently to treatment so who's to know?  Atleast we try to help ourselves to a long life.

We know that chemo does not kill cancer stem cells, if it did, there would be a cure, right?  It does help control tumor growth, and a drug that's considered a successful one gives either stablity or regression in about 40% of patients, for a limited time (six months is average).  Unfortunately, cancer mutates to become immune to the chemo.  I think that's why most new cancer drugs may have increased TTP (time to progression) but not significant TTD (time to death). I postponed starting chemo once I became metastatic because I knew that the sooner I started a drug, the sooner it would fail.  But recently I have started having symptoms that are bad enough for me to want to try to get some relief.  So I have just started Xeloda.  Don't know yet if it is working.

That's interesting Virginia.  Thanks for the heads up.

Lorrie 

Angel...although you will get stats that are all over the place with regard to TN..you are simply way way off when you state that only 3% are survivors. I think you're getting confused with stats you've looked at re : chemo benefit which can be in that range in some cases. As much as TN sometimes gets a bad rap things are not nearly as bleak as that...thank heavens

Angel Im sorry you feel so hopeless.  I have a friend that had triple negative BC, she had to have a bilateral mastectomy and on one side it was so advanced they removed her muscle.  She had node involvement too.  She is over 6 years out.  6 years.  Her daughter is a wonderful woman now who is 22.  She has lived 6 years to see her grow to that kind of a woman. 

I can tell you that she was scared too, like you....like me.  But she's still doing good.  Will she have a reoccurance?  Maybe.  Maybe not.  But I will tell you that she believes without the treatment she had...she already would have.  Chemo isn't a picnic but right now its what we got.

Dont believe everything you read or hear.  Not even on here.  Hang in there.

Teresa

Angel, I can tell you it does work for most and it did for me , my tumor was 4.5 cm when I was diagnosed and after me very first chemo it had already started shrinking and by the second it was 2.4 cm and by my 4th treatment right before I was to have my surgery it was gone and could no longer be felt, so I went in to surgery and to my surprise when I woke up my Dr said we could not even find where it was if not for the clips that were left in from your biopsy, so it can work for you also ,you have to give it a try anyway, I am 2 years out from my last treatment and just had clear scans  so just say a little prayer and let God handle it for you

Tina

Angel ..I so wish that we could still pull up real old posts on this board. If we could I would tell you to go to my first few posts which now seem like many moons ago. I came to this board much like you, frightened, scared, and convinced I was going to die. I knew absolutely nothing, zilch, nada, about breast cancer. I had just had my first mammo as a result of a lump(tried to get one earlier but was told by my Dr. "in Canada we dont screen till age 50" ). Then I began to read, and study, and learn. I turned into a sponge and began to soak in every tidbit of info that I could find...and with a little patience began to develop filters to wean out the info that was so obviously over the top that it had no place in my learning process. Many women on this board were very kind. I clearly remember Shirlann(and Im pretty sure she's still around here somewhere ) talking me off the ceiling on more than one occasion. Then something really interesting happened...I stopped panicking. Now if you asked me how I did that I really couldnt tell you, I didnt set out to do it, I didnt find the revelation I had been looking for, but what I did do was slowly, once my treatment was over, I began to live. I got busy with work, and life, and now when I do think about my BC I only think about it in terms of the GD side effects from chemo that have left me with a pain in the a-- problem with my jaw which unfortunately is the only way that BC still interferes with my life(well, that and the 25 pounds i gained going into menopause....but...lol...thats for another thread ). Really I dont think about my BC in terms of it killing me any longer. Now dont think I've deluded myself into believing it cant...but I simply have far too much to do, and am far too busy enjoying life to worry about it any longer, and the beauty of it all was that with time it just happened. Which is why Im so rarely here now.

I know you find this hard to believe right now but you will get through this. You received some very good advice esp when you were told to look at the Johns Hopkins material which is a great source. Try not to let yourself get caught in in too much info too quick, you'll learn how much you personally want to know and where to find it as time goes on and eventually barring any further problems you'll be much more comfortable with your diagnosis and god willing, or knock on wood, or whatever other phrase you are comfortable with you'll get back to living too

For anyone that has read this nonsense and got upset, take heart because it is just that - nonsense.  Unfortunately, on thise site the vast majority of people are good hearted and just fellow travellers, but there are a number of posters that aren't.

May I recommend that a really useful and very easy to follow site is

www.cancerfacts.com

I believe it is subsidised by the Lance Armstrong Foundation (which is how I found it).  It isn't just about chemo, it has great info on rads etc etc etc.  The notably useful thing is, you enter all your details (grade, age etc etc etc) then it gives you  alongside (for instance ) chemo treatment info, a list of about 10 studies, trials etc etc which would explain recent thinking  etc on your particular situation.  So the great thing is, you don't have to go digging about all over the place and ending up (as I certainly do) getting confused and fed up.  It has very easy to follow bar charts.

And here's the bit I like the best - seems to give happier outcomes than adjuvantonline,  which is more focused I think on a simpler thing to give you some indicators as to whether you should do say, chemo.  Cancerfacts has a wider offering and you might find it encouraging.  I did, as I am doing a lot of research on node pos folk at the mo and I am finally getting my head around numerous studies in this regard.  The stats work on the most recent info available (or at in the last year approx) so in my instance I think I succeeded in finding some good news given all the particular treatments I am having, and the prognosis and recurrence position was much less daunting.

 Chemo isn,t what I would call fun.  It would be wonderful for all of us if there were other treatments that really could help us.  They are coming as we know, but right now, we are fairly limited in choice. 

 We have already had a hot debate about misinformation .  Accurate info was provided as to the actual chemo stats.   We all discovered that there was an odd agenda at work.

The vast majority of people on this site do their research work, think things through, and decide to put up with the chemo.  OF course we don[t enjoy it, but there[s a very good chance it will help us.  Some people make a definite decision not to do it, and for some people it isn[t appropriate - I don[t think I[d bother if it really only helped  say two per  cent or something.

 My point, and that of  some other posters here too, is that actually we aren[t all daft biddies that just did like the doctor said without some comprehension of the issues. 

If the 3 per cent thing quoted above were true, basically girls we are all stuffed.  But the good news is, it isn[t true.

Live long and prosper -

Linda- feel free to PM any time!

I don't think anyone on this thread specifically was accused of anything;  rather it has been pointed out that you can't believe everything you hear or read. 

As Virginia says, most of us here are fellow travelers, but we also have some pretty blatant internet trolls, histrionics, pot-stirrers, Munchausen "sufferers," and others with questionably nefarious purposes.  A bit of skepticism (and Googling) is always wise, especially since there is so much opportunity for anonymity on the internet.

From Wikipedia:

Münchausen by Internet is a pattern of behavior in which internet users seek attention by feigning illnesses in online venues such as chat rooms, message boards, and Internet Relay Chat (IRC). It has been described in medical literature as a manifestation of factitious disorder or factitious disorder by proxy.[1] Reports of users who deceive internet forum participants by portraying themselves as gravely ill or as victims of violence have appeared only recently given the relative newness of internet communications. 

ROFL. Munchausen by Internet.

That's the funniest thing I've read this month.