To those who have survived 6 or more years at stage IV

[Christine MH-UK]

I was recently very troubled by something another patient told me. I was telling her not to give up hope: stage IV her2positive Jane Tomlinson, after all, had been diagnosed as terminally ill nearly six years ago, but because she lucked out and got on the herceptin trial for secondaries, was still alive (although now quite ill) and cycling across the US to raise money for cancer. She's gone all the way from California to Ohio so far.

Well, this patient had told her that she had heard that the original cancer diagnosis was a misdiagnosis, a rumour I have heard, but I always thought it came from really ignorant people, since how could someone be so badly misdiagnosed yet end up on a trial. Astonishingly, the patient said that the person who had told her this was her breast cancer nurse! Now, the nurse did not know Jane Tomlinson personally, but she just assumed that there was no way that someone could live that long with secondaries since she personally didn't know of any other cases, but I know from chatrooms that there are some people who live a long time, even if they do not reach NED. I personally know someone who has declared terminal and managed at least three years on just herceptin and aromatase inhibitors.

Well, this just makes me really feel sick. There Jane Tomlinson giving 110% to raise money for cancer research and bringing hope to people with cancer and ignorant people are cutting her achievement down. OK, maybe she is unusual, but surviving six years is not impossible. I fear, too, that these unfounded rumours are affecting her fundraising. Anyway, I was thinking that if some long-time stage IV survivors wrote into the blog http://janesappeal.com/?m=2006&w=34 that they too had survived a long time, this might help to quiet these damaging rumours that seem to be based on nothing more than idle speculation.

I don't think that she should be told about these rumours, since she has alot to do (get to NYC by early September) and needs alot of encouragement (due to being rather poorly and dog attacks).

A big thank you to anyone who writes to her.

[madubois63]

I have had my ups and downs, but plan on going nowhere for a very long time. I was diagnosed 6 years and 8 months ago...I'll write as so as I can.

Maryann

[Ragini]

Hi,I was diagnosed first in 1998 (age 34yrs) and had a recurrence in 2000 and have been on some form of treatment eversince. I have had a lot of ups and downs. I have now practically exhausted most of the chemo regimens along with herceptin. I am hoping to get on the Lapatinib EAP. I hope in your case there is stable disease. Her2+ positive cancers are very aggresive but many people have gone into remission after yrs of remission. We need to focus on our short term goals rather than thinking ABOUT THE NEGATIVE INFLUENCE OF THE PRESS ETC.

lOTS OF HUGS ,
RaINI

[Lolly]

I was diagnosed as Stage IV with recurrent Her2+ BC to supraclavicular and neck nodes, along with skin mets, in January 2001. Have been on Herceptin +/- chemo ever since, and still going strong after 5 and 1/2 years! I'll write in the blog tomorrow, she deserves encouragement and lots of cyber HUGS for her accomplishment!

<3 Lolly

[DEAK95]

I am only 8 months out from Stage IV diagnosis with Bone Mets and definitely want to hear about more of us patients living 5-10 Yrs since Stage IV dx. I am on Herceptin and Aromasin and Zometa and Lupron and last PET Scan showed "significant improvement" so I am happy for now but always thinking about when "the next shoe will drop" in the back of my mind!!!! For now I am living in the present with my two teenage daughters and wonderful husband!!! I'v stopped working and have thoroughly enjoyed the summer months with the girls!!! I feel like I'm on a mini-vacation but the stress levels have reduced dramatically from not working!!! So, I'll enjoy the moments and memory making with friends and family for now!!!! Still having weekly Herceptin and resting when needed but enjoying every workless moment!!!!! Hugs to all!!!

[StephN]

I have been watching Jane's progress since Christine UK posted the link. (Thanks, BTW.)
I don't happen to watch the TODAY show or read magazines such as Glamour which had bits on Jane's ride.

Anyway, it has been bugging me the way they are presenting Jane as a DYING person doing this ride. Like it is the last thing she will ever do. (I did post on Jane's site and tell them I thought their PR angle was wrong.)

To my mind she is a SURVIVOR doing an amazing feat - just as Lance Armstrong is a SURVIVOR. Maybe the difference is that his cancer is in remission and her is not, but she does get Herceptin and I am sure she can live longer.
People forget that Lance is NOT CURED, his cancer could come back any time, and we here are keenly aware of that. He IS stage IV, too.

Anyway, just my humble opinion as a cancer SURVIVOR of 6 years and 5 at stage IV.

GO JANE - and live to bicycle the length of Britain or whatever you like.

[MCS]

Steph,


ATTA a girl. We are ver brave girls aren't we?

I have said many a times here. There is no cure. Just a lot of hope and good fortune that when your case turns out to be for the worse, there's treatments and new meds to help us.

I also believe in anyone that raises funds. I wish more people knew about HER2 +. It would make such a difference when we talk about it. We also need the attention so we can get funding for more treatments.

Like the Breast Cancer Foundation slogan, wouldn't it be nice if we could erase this disease?

XOXO to all

MCS ( maria)

[sadie]

fyi:
My onc actually used the the words "we cured you of breast cancer".
I had Adriamyacin/Cytoxin then Taxol/Herceptin then radiation;Now receiving Herceptin alone until Feb 07.
My onc said she would be truly shocked if my cancer were to come back.

[sadie]

Has anyone heard of this?
I heard on the news on the radio today that they discovered they could do something to white blood cells so they would recognize cancer cells and attack them.
They interviewed a man who was diagnosed as "terminal" 4 years ago. They used him in a trial (I don't know when) and now he is cancer-free.
They believe they could use this "treatment" to cure breast cancer among many other types of cancer.
Has anyone else heard this news?

[StephN]

Sadie -

Your posted question on the white blood cells will be lost here.
Maybe try to post as a new thread. I head some snatch of this, but not the whole thing.

I am glad your doc can say you are cured. Mine never said such a thing, even after adjuvent treatment. Just gave me some 2-year without progression stats, which I did not make.

[SusanV]

Sadie,


Yes, I heard this on the evening news last night. The man in the trial had skin cancer, and they did say they are going to trial breast and prostate cancer next.

[sadie]

Thanks StephN,
I took your advice.
Started new thread today.
"Cure for some cancers?"
It would be great if this is true.

[fcrcm]

This is for the 6+ years with Stage IV thread.

I am in a group of breast cancer survivors. We began to meet when we were early diagnosed (1990-1991.) Two of us have been STage IV (bone mets) since 1991. Another has IBC (Inflammatory Breast CA - IIIB).

The one with IBC has had lots of things go wrong in her body, but is NED.

The two of us who began this journey in Stage IV are still around. I have liver mets now and my friend has increase in bone mets and some soft tissue involvement. Our treatment choices have been different and we are always in treatment of one form or another. I've made little change to my diet (well, I am sensible about fats, alcohol, etc). My friend has been on a very rigid McDougal type diet and takes a jillioin supplements. The friend with IBC only began to exercize two years ago - she said she had no idea it would make her feel better - and made no dietary changes whatsoever.

Even though treatments control our lives (the schedule, the side effects, the worry etc) we are all three living lives that include family and travel and study...lots of good stuff. I grow incredible vegetables.

Courage, my friends.

[Annemarie]

Hi,
I was diagnosed 6 years ago (May 2000) with stage 3b. I had a brain met in 10/01, 10/02 and 10/04. So I have been living with Stage 4 for 5 years. I feel great. I take Herceptin, Femara and Temodar. Happy to be alive and feeling great!
Annemarie