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.