Invited to a talk by Dr Slamon.
 

I was one of the first people to benefit from Herceptin here as it was approved for early stage BC the week before my dx in 2005. As Herceptin is now ten years out for early stage Dr Slamon is giving a talk and F&Q tomorrow evening in Dublin (Ireland) and I'm really looking forward to it and really believe many of us wouldn't be here still without this drug:)

Re: Invited to a talk by Dr Slamon.
 

That is exciting! I agree with you, many of us would not be here if not for Dr Slamon and Herceptin!

Can't wait to hear your report, I want to hear all about it!

Carol Ann

Re: Invited to a talk by Dr Slamon.
 

Hey Tricia,

I met Dr. Slamon a few years ago here in Toronto, at the Princess Margaret Hospital, after he gave a talk on Herceptin. I had my picture taken with him, and he was so supportive of all of us there.

Enjoy your evening with him, I agree, if it weren't for Dr. Slamon, who knows all of us Her2ers would be doing?

all the best
caya

Re: Invited to a talk by Dr Slamon.
 

Most certainly so many of us owe Dr. Slamon our gratitude. I was dx. around the same time as you Tricia.
Here in the states early stage dx. women were not given herceptin. You had to take it off label. I flew out to California to consult with Dr. Slamon. He was so wonderful, patient and most of all so caring. It was such a frustrating time in my life. As the dr. in New York would not even consider treatment with herceptin/chemo being an early stage dx. her2 even though I was triple positive. At that time the oncotype DX test was also new and not even covered under insurance. Most onc. and dr. at that time back then would not order the test. I had insisted on the test being ordered and I ended up having to have the slides sent from the hospital myself out to Calif. The test results came back with high score for recurrence. Now ten years later just the other day I saw the test mentioned on TV as a way to determine if a woman should have chemo. I thank God each day for Dr. Slamon who agreed with me and said, 'Yes you should have herceptin treatment" we have come far but still have so far to go. Dr. Slamon's position was all women who are dx. with HER2 should have herceptin.
That was very forward thinking back in 05.

Re: Invited to a talk by Dr Slamon.
 

I agree that we have Dr Slamon to thank for saving our lives and finding a drug to fight this aggressive cancer. I'm sure he has saved thousands of us already. What a huge impact he has made. I too thank him daily.

Re: Invited to a talk by Dr Slamon.
 

Tricia, how wonderful that you get to see Dr Slamon. May you have a one on one before or after his presentation. I know you will thank him for all of us. I still remember my oncologist saying something like, "fortunately we have a new treatment for your Her2." That was 2006. I too am so thankful to Dr. Slamon and those who worked with him. Can't wait to hear your report.

Hugs, Catherine

Re: Invited to a talk by Dr Slamon.
 

Thanks everyone, I'm sure there'll be many people there but it would be wonderful to get to meet him and shake his hand and thank him from all of us:)

Re: Invited to a talk by Dr Slamon.
 

I, too, had the benefit of Herceptin for early stage BC...before it was approved. Jean, you were dx'd in April, 2005, I was dx'd in May, surgery in June, 2005, and Tricia in July, 2005. A year to remember!!! I also had to pay for the Oncotype test...and Herceptin as my insurance company deemed it "experimental". I am broke, but alive!!!!!You are lucky Tricia to be able to see him!

Re: Invited to a talk by Dr Slamon.
 

Tricia,
Enjoy the talk (it should be wonderful) and get a pic with the doc. I was diagnosed in May, 2005 and was blessed to find a doctor (one of two I consulted with) who felt that I should have Herceptin and would get it........despite my early stage diagnosis. I will always be happy that I got at least two opinions and finding a doctor who was a good problem solver and thought "outside the box". As Jean knows, it was not common "back in the day" to find such a doctor.

Re: Invited to a talk by Dr Slamon.
 

Thank you Karen, Suzan and everyone else, it was a great presentation by Dr Slamon and I enjoyed it a lot and although I didn't get a pic with him I was delighted to hear him say the C word...aka cured! :)

Re: Invited to a talk by Dr Slamon.
 

In what context did he use the word "cured"?! :) Please fill in the details!!

Carol Ann

Re: Invited to a talk by Dr Slamon.
 

OK, the selfie was NOT important !!!!!

Glad you had a great time and heard good news as well as the continued shaping of the story and journey for HER 2 + folks.

Re: Invited to a talk by Dr Slamon.
 

Carol and Karen, he said in early stage they see very few late reaccurances, so if you're okay by year three the chances are you'll be okay and he believes early stage ladies who do not recurr by year three may well be cured of their disease.:)

Going on to the stage iv ladies, he said if someone is on Herceptin for three years with no progression he'd suggest stopping the Herceptin with close checking every few months. If a person goes three years as stage iv with no progression he'd stop herception and just monitor and he has lots of ladies he feels "cured" at stage iv of disease when they reach this stage.

Re: Invited to a talk by Dr Slamon.
 

This is well beyond "good news". This is life changing news and will be very welcome to folks on the site. Thank you so much for posting !!!

Karen

Re: Invited to a talk by Dr Slamon.
 

Hi Tricia
Thanks for posting this great news!!!
A C word we would all be happy to use!!!

Re: Invited to a talk by Dr Slamon.
 

Agreed Juls, and he said the ten year data has given them new stats so he feels confident in saying the future is looking very bright and promising for her2+ patients and survivors.:)

Re: Invited to a talk by Dr Slamon.
 

Wow that is great!! Thanks for sharing this info. :)

Carol Ann

Re: Invited to a talk by Dr Slamon.
 

Thanks, Tricia, for the great news. Lucky you to hear Dr. Slamon! I love the C-word (cure) being bandied about! Shots of hope all around!!!!

Re: Invited to a talk by Dr Slamon.
 

Yes I was also there to hear that good news on Friday night .
I has meet Dr Slamon , and have been to many of his talks here in
Ireland , Every time its more promising for us Her2 girls , l myself was on the beth study , ��

Re: Invited to a talk by Dr Slamon.
 

Was he talking about women who had herceptin and perjeta in early stage when he was talking about being cured after 3 years?
If hewas just talking about chemo w/ herceptin, I recurred after 3 years and have seen many other women who have developed mets more than 3 years out.

Re: Invited to a talk by Dr Slamon.
 

Laurie if I'm not mistaken he was referring to chemo with Herceptin and didn't say everyone would be cured but said the rate of no recurrance's stood at around 92% which is far higher than it was, but said they see few late recurrance's.

Re: Invited to a talk by Dr Slamon.
 

Did his "cured" references have to do with those who are hormone negative. I could see that statement being made in that context. However, being erpr+ as well is a different disease. Did he differentiate?

Re: Invited to a talk by Dr Slamon.
 

I was wondering that, too, Becky thanks for asking!

CA

Re: Invited to a talk by Dr Slamon.
 

Thanks for sharing this great news, Tricia!!!

Re: Invited to a talk by Dr Slamon.
 

Thanks Suzan, Becky and Carol, while he did make some reference's to hormone pos and neg I really don't recall him saying anything during this particular comment, Margaret was there too so perhaps she can recall that, Margaret??

Re: Invited to a talk by Dr Slamon.
 

I, too, am interested in more details of the 3 years on herceptin for stage IV, as I last recall him saying that if there was no active disease after SEVEN years on herceptin he would take a patient off.

And that was great news as it was a shift from the position that a stage IV patient needed to take Herceptin for the rest of her life! Which I had been planning on, since I had two recurrences.

Re: Invited to a talk by Dr Slamon.
 

Yes, Steph, it was my plan to stay on Herceptin for the rest of my life (when I recurred in 1998 a month before the FDA fast tracked H out of clinical trials to make it available to all metastatic bcers). I stayed on for 10 years. Been off since 2008. All good.

I heard talk a while back that we should stay on for 5 yrs. That 5 was as good as 10. But I was most comfortable at 10. 4th stage throughout the liver was a very scary place to be. I was told what I had was INOPERABLE, INCURABLE AND THAT I WOULD BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF MY LIFE.

Well, after 9 mnths of Taxotere, I couldn't take any more. Peri cardial effusion, pleural effusion and more... And with just H I did great.

My first three years on H -- I went WEEKLY! That's how it was done at first. In France they switched to triple the dosage every 3 wks but when my doc told me I said, I'm going to wait a yr, to see if they all live, seriously, and then I'll switch. And they lived. And I switched. And then I lived! Every week for 3 yrs chemo. WOW. My husband came with me to every one.

I did get to meet Dr. Slamon in the early 2000s in Santa Monica at UCLA. I was seeing Dr. Pegram. Slamon was no longer with him in practice, devoting all his time to research. But I heard he was in the building and I announced I AM NOT LEAVING TILL I MEET HIM.

He came into the exam room in 2 minutes. I stood on the step of the exam table (dressed) in short heels and we were practically nose to nose. I threw my arms around him and said the unbelievable words -- THANK YOU FOR MY LIFE. We hugged for a really long time, good and tight. When I looked at his grinning face I realized he was as thrilled to meet me, a SURVIVOR b/c of all his hard work and devotion to getting this to women, we just reveled in the joy. Paul, my hubby, was also on his feet and they shook hands happily, pumping away. I did thank Dr. Pegram too. Slamon said he was a part of the team too. He was a bit shy and was exiting the room, but we all insisted he stay.

Dr. P continued our visit with my it seemed 500 pages of medical history his assistant had thoroughly reviewed prior to our meeting. We talked for a good while and he said at that time there were no answers as to how long to stay on H. You are in uncharted waters he said. And so I was. I just kept following my Inner Voice. I felt great, had STABLE STABLE STABLE CTs ev 3 mnths, then ev 4 mnths CHEST ABD PELVIS and was so so so glad to be alive. My 2nd dghtr got married. Grandkids were popping up. (I'm now up to 5.....!!!!!) Next March Paul and I will be married 50 yrs. Life is so sweet.

Paul and I left feeling we had seen Elvis!

Please see my article in a new thread Pinkie managed to post today. The Sun Sentinel here in Fla has been publishing a LIFE'S VICTORIES series throughout October and today I was honored to have my story and pic appear -- hopefully to touch and inspire many out there facing some pretty scary stuff.

Light and Love, my Sisters... Andi

Re: Invited to a talk by Dr Slamon.
 

Oh Andi I am crying with joy for you reading this. Thank you for posting. That is so wonderful you got to meet him.

I love Dr Slamon! Just thinking about all the struggles he went through to develop Herceptin brings tears to my eyes all over again.

Carol Ann

Re: Invited to a talk by Dr Slamon.
 

Same as Carol Ann!!

Andi - As usual a great post!!

Re: Invited to a talk by Dr Slamon.
 

Andi and Steph, he definately said anyone stage iv with no progression for three years he would normally try to talk them into stopping the herceptin but monitor closely, he said this was hard work for him as most women who have been stage iv and are NED for three years would be very reluctant to stop.

Andi, I'm just going to check out your post now!:)

Re: Invited to a talk by Dr Slamon.
 

Back in the day he said 5 yrs is as good as 10. Nowadays he's saying 3 yrs. I am very cautious. Overly so. I felt good, it's the "easy" chemo (lol) and doable and I loved STABLE STABLE STABLE.

Remember I had the mindset that I would be on longterm chemotherapy for the rest of my life -- bleak!!! The stats were even drabber. So I tossed them aside and decided I would be in the 15% that survived. SOMEONE HAD TO BE IN THAT GROUP? Why not me?

I meditated, did mantras, took my supplements, prayed, lived with Love, Joy, Compassion, Gratitude, Kindness, Generosity -- and that all comes right back at you!!! Karma is for real.

The Life Channel movie about Herceptin and Slamon -- I cried. Loved the story. Lived the story.

Re: Invited to a talk by Dr Slamon.
 

Aw Andi - you are most definitely awe-inspiring. I remember when you went off of Herceptin (I was lurking after 1st BC with no Herceptin for early stage). "Vitamin H" you called it.

So happy for you that everything is joyful! You spread joy within this group.

Janis

Re: Invited to a talk by Dr Slamon.
 

Awww Janis. Jaykay. Of course. Many may not know me but I used to hang out here every day. You can find my threads if you do a SEARCH. Andrea Barnett Budin.

May my words go out to remind the senior members and to awaken the newbies. If one person can do it -- so can you!

Love and Light always my Sisters,
Andi

Re: Invited to a talk by Dr Slamon.
 

I can think of three of our members here who stopped Herceptin after 4 or 5 years and had recurrence. The first was Jackie from down under who stopped at 4 years, and she never got back to NED, may she rest in peace.

I would still be "overly cautious", even though we have Perjeta and others to work with vitamin H.

Re: Invited to a talk by Dr Slamon.
 

I stopped after 4 years Ned because the side effects were just getting too much. It has only been 9 months since I stopped, but so far I'm doing ok. I have my next scan in Nov.

Re: Invited to a talk by Dr Slamon.
 

I am aware of what Steph just mentioned, which kept me to stick with the program. The side effects from H were nothing for me compared to Taxotere. And I still feel side effects from T and from the 21 lymph nodes removed from my arm to this day (17 yrs later).

I recall someone going off Vitamin H and then reducing the dosage and/or the frequency of receiving it. Some I think had saline added to H to reduce their side effects.

Think about how to make it work for you.

Still glad I did 10 yrs of H even though my onc wanted me to stop at 5. I've been off H since '08. Still stable, with some scary CTs in 2013 and this past June but -- BENIGN... Humbly grateful.

I keep talking to my body. And the Universe. HEALTHY AND WELL. NO MORE CANCER. Every day. And -- I look up about 6 x a day and say THANK YOU.

Re: Invited to a talk by Dr Slamon.
 

This sounds hopeful.

My Aunty is triple positive and I have been getting a little freaked out reading information online, but this gives me hope.

Re: Invited to a talk by Dr Slamon.
 

Ladies, all so good to see you.
Tricia , thank you for the meeting with dr s.
I was dxed in may 2005 with stage iiic bc, terrible prognosticators, and after my last surgery back then , no clear surgical margins. I remember they had to pry the newsweek magazine out of my hand while being wheeled into surgery. The front page article highlighted herceptin as a breakthrough. I just prayed i would be able to receive it.
I stayed on it for 6 years, while no mets detected, my docs thought i was too high risk to go off. ( was living outside of the u.s)
i am well and thankful every day.
Andy, i have followed you and think you are just fabulous.

Re: Invited to a talk by Dr Slamon.
 

My take is -- forget the stats. You are not a statistic. Some survive. Be determined to be in that little group! That's what I did. I KNEW not to focus on the lousy odds. Instead, I meditated and open myself to Universal Love (I know sounds sappy but it is everywhere and if your mind and heart are open you can easily tap into it.)

Envision yourself far into the future. My vision was to see my new grandchild grow to be 13 and be Bat Mitzvah. I saw myself standing and clapping to music at a round table, surrounded by loved ones. I looked fabulous (why not, it's your dream). I was glowing as I suspected such a moment would engender. I lived with joy and serenity KNOWING my desired goal of survival ALREADY EXISTED and I was focused on calling it to me. With mantras. With images. With and abundance of Love and Gratitude, compassion, kindness, generosity, caring. KARMA. It's for real. It will return to you tenfold.



Of course I remember you, Linda -- IKC Gumby. That signature name always intrigued me and I enjoyed your posts.

Hug pp. A lot. Long and warmly. Exchange positive energy with them. Even strangers. The more you do for the others the happier you feel. Gratified. On purpose. We are all here to help one another.


BTW -- I lived my dream. My granddaughter was Bat Mitzvah and is now 18 year old! And off to college. On a full scholarship. I lived to see my 2nd grandchild Bar Mitzvah. I lived to see 5 grandchildren come into this world!

You know my story from my signature. And my article in the newspaper the other day that Pinkie posted on this site. May it inspire you. If one person can survive -- so can YOU!


Andi

Re: Invited to a talk by Dr Slamon.
 

Thanks Pinkie. I used to be able to set my colors in an email and copy and paste. This is an annoying process but -- it works.

My cut little cartoon figure holding a bunch of hearts on strings failed to make the trip from email to post... :o(((