Invited to a talk by Dr Slamon.

[tricia keegan]

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:)

[Carol Ann]

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

[caya]

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

[Jean]

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.

[thinkpositive]

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.

[Catherine]

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

[tricia keegan]

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:)

[suzan w]

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!

[karen z]

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.

[tricia keegan]

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! :)

[Carol Ann]

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

Carol Ann

[karen z]

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.

[tricia keegan]

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.

[karen z]

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

[Juls]

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

[tricia keegan]

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.:)

[Carol Ann]

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

Carol Ann

[Laurel]

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!!!!

[margaret.cronly@gmail.com]

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 , ��

[Lauriesh]

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.

[tricia keegan]

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.

[Becky]

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?

[Carol Ann]

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

CA

[suzan w]

Thanks for sharing this great news, Tricia!!!

[tricia keegan]

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??

[StephN]

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.

[Andrea Barnett Budin]

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

[Carol Ann]

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

[Juls]

Same as Carol Ann!!

Andi - As usual a great post!!

[tricia keegan]

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!:)

[Andrea Barnett Budin]

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.

[jaykay]

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

[Andrea Barnett Budin]

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

[StephN]

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.

[Lauriesh]

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.

[Andrea Barnett Budin]

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.

[irishrelative]

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.

[lkc Gumby]

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.

[Andrea Barnett Budin]

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

[Andrea Barnett Budin]

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(((

[Juls]

Good idea - forget the stats- just wish my Onc. would do this!

Looked for article on Dr Slamon's visit to Ireland. Only one small article in Irish News newspaper. Had hoped there would be more coverage.

[Andrea Barnett Budin]

I learned from the getgo -- nurses and docs have a way of looking at you (no malice intended I understand) as a walking dead person.

I had a 9 cm tumor in my breast. I went to my radiologist, bumping my mammo up cause I found a general hardness in my left breast that started to freak me out. Not a pea or a marble. The size of my hand. Must be a cyst. I'll have to have surgery to remove it I told myself in my saner moments.

The nurse checked me out, as is customary in that office. Then the mammo. Then wait. In your robe. Then they called me for addl pics. I am dense so this is my norm. Then back into the nurses office. The radiologist came rushing in, looking harried and distressed. She did an ultrasound. Around and around and around. Then she did it all again. Gosh, she must really be busy I thought, noting her demeanor.

Get dressed. Meet me in my office.

Well, that was abrupt. As I walked down the hall the nurses came from everywhere and backed away from me, their backs against the wall. The air was thick with a weird energy. They all knew!! That's the lady with the big tumor in her breast.

The way docs and nurses look at you says so much and it is so scary. We sense it on a cellular level. They need to stop doing that! Still all these yrs later, when they find something "new" (in my belly these days) they look seriously concerned. They have seen it all. And so much of it is so awful.

I have to clear their energy out of my way. I sit calmly and smile. I lock eyes with my wonderful onc who is clearly disturbed and wants a biopsy which means surgery cause the new thing is deep inside, and I say assuredly, I do not have cancer. He just doesn't know what to do with that. I am certain. He needs a biopsy to see if his worst suspicions are true.

I did the surgery (abdom) in 2013. Benign. All that fuss. And I felt great physically going in and like crap leaving. I don't do anesthesia well. And I learned that every move we make doesn't just involve the spine -- it also involves the abdomen. So getting up from a sitting position, from a lying down position means -- prepare yourself, you're going to feel a blinding stabbing pain. The surgery inflamed my chemo-induced IBS (which is my constant companion since 1995) and my semi awful condition went to major problems, for months and months.

I told my onc -- I am never doing that again, just so you know. He left me alone in 2014 (at my annual CT scans (chest/abd/pelv). In 2015 the radiologist report came back stating, the mass is growing. What mass??? No one mentioned a mass. The thing they saw in 2013 was benign. Geez. Surgery, need to biopsy. NO. I am not doing surgery again.

I do not have cancer. They stare at me. I saw 2 surgeons. The 2nd, head of oncological surgery with an excellent rep suggested surgery. I refused. He looked away not knowing what to do with this woman who insists she does not have cancer. I said, I would do a needle guided CT scan biopsy. He went out to talk to the radiologist. He returned and said, though it is very deep, he says he can do it. And so they did, many wks later cause of hospital screw ups and office staff mess ups. I just kept on my case. Calling, every nicely, asking questions, urging, making my appeal for sanity and efficiency.

Bottom line -- benign.

When I called 5 times for 5 days after for results I finally got through. There was silence when the nice doc got on. He knew why I was calling. What's going on??? So I asked, I would like to know my results. It's benign. Great. Why do you sound so solemn??? Well, whenever we hear benign we always think it could be a false reading. Really? Well, how certain are you that it is benign??? Long pause -- slowly 95%. I'LL TAKE IT. I want to hug you. I got him to laugh.

Nothing is 100% I explained to him. We chatted a bit. My octreotide scan (2 hrs of scanning one day and then another 2 hrs the next day) after a special injection -- was all clear. I said, thoughtfully, I think I love you. I got another laugh. And some more conversation.

But -- I do think you should re-scan in Dec. Fine. Then, he said, if that's good, we'll leave you alone. Hmmm... I am scheduled.

I was demoted. My graduation to annual scans (17 yrs in the making) is now back to every 6 mnths. (But at one time I was every 8 wks for a yr, then ev 3 mnths, then I begged for ev 4 mnths and finally got to ev 6 mnths. When I got to annual scans, I partied.

But the doc's looks, and the nurses, their worry is palpable and disturbing and I've tried explaining this to no avail.

They get all focused on the stats. I refuse. I am a human being. Not a statistic. And I'm sticking with that. Just saying... My best advice to all y'all...

[Becky]

Oh Andi! Your mammo story is so much like mine but nobody would tell me anything. I even begged the technologist who took the mammo to tell me something but she said she couldn't. Off to ultrasound. And you know. The way they look at you. Like you're catchy. I got dressed and the mammo technologist was there. She looked at me hard and said God bless you Rebecca. So she was kind after all as that answered my question.

When I got home my husband asked what happened and I said I have cancer. He said, they just told you outright. I said, oh no, the doctor will call but the technologist said God bless you and that's never happened to me after a mammogram before (or since)

[tricia keegan]

Juls, I had a search myself and found very little too.:(

Andi, I think you have it right and do think most Dr's focus on the stats too much, my GP is very solemn and always looks at me like I've one foot in the grave lol.

[Andrea Barnett Budin]

Becky, At least that kind tech gave you a good inkling. Though I am sorry you didn't have a doc/radiologist to talk to right then and there.

That I did. She was breathing heavy. Her chest heaving. She walked her chair from the screen holding my xrays and at her desk she locked eyes with me. With her hands clasped she absentmindedly moved the papers in front of her to the side. "You need a breast surgeon". I assumed the thing I thought was a cyst and suspected would require surgery was the reason. Still, the looks of all those nurses in the hallway and her behavior was telling me otherwise.

I said, Is it a cyst? She said, NO! Pause. She took a deep breath
and said, What you have is -- a solid mass! I couldn't think what that meant. She didn't say it was a tumor. Was a solid mass a tumor? I couldn't speak.

Turns out she offered to call a breast surgeon for me. Same name as the one I'd gathered in advance from friends. It was 5 o'clock on the Friday of 4th of July weekend. I nodded yes to her question. She dialed the number. She turned to me and said, The office is closed. It won't be opened till Tuesday...

I could not think. She said, I have his home phone number. Pause. I can call it for you. I nodded. Still unable to speak. I heard her describe the situation and my heart was pounding. It sounded dire. She turned to me and said, He said he can meet you at his office tomorrow, Saturday, at 10 o'clock. Is that good? I nodded.

I went home not KNOWING but....

[Andrea Barnett Budin]

I had called my GYN b/c I had found something that was very concerning to me. I explained it all to his assistant. This was wks before. She said the doc could not see me till 2 wks later.

I called back and emphasized that it was kind of an emergency. There was nothing she could do about.

I called back again and said, Maybe I should have a mammogram so he will have more information to go on. That's a good idea she said. Geez.

When I saw the GYN, after the mammo and after the Saturday morning the breast surgeon opened his darkened office just for me, where he told me after examination and looking at the mammo xrays the radiologist had given me, in his personal office, he told me and my husband that it appeared that I had breast cancer. That was the first time that word cancer had been used.

He was going to do a surgical biopsy but that would not be for about 10 days as he was all booked up. He was very kind, caring, well-informed, professional and pretty wonderful. My husband asked, Well, how certain are you? He paused, leaned forward in his chair and said slowly, shrugging his shoulders -- 99 . 9 % certain.

So when I got to the GYN (who had seen me in Nov but hadn't checked my breasts cause I was having a peri menopausal issue with heavy bleeding and vastly irregular periods. Nothing for 3 mnths and then bleeding for 3 wks. Weird.) the GYN began to pace in the overly large exam room hearing my story. He was out of breath from all his pacing. How did this happen?! I just saw you. He was checking his notes on the large counter. The nurse was handing him pieces of paper.

When he left the room, as I was dressing, the nurse turned from the counter and papers and ran to me. She was a large woman. She threw her arms around me, kind of sobbing, and said -- I will say a prayer for you.

That's when you know for sure that you're in really big trouble.

[sarah]

Yes, we are all here thanks to him. If you haven't seen the tv movie "proof of life" (I think that's the title), do so because it shows how his perseverance helped when gentech and ucla stopped helping his work, he kept on with the help of the Tartikovs (spelling?). now of course, Genetech loves herceptin! but he really had to fight for it. thank you Dr. Slamon. and the FDA wanted him to prove it helped all breast cancers!
Thank goodness for a dedicated and stubborn scientist with a brilliant vision. We are here, enjoying life thanks to him. I hope now he will always find funding easily for anything he wants to do. He deserves that. and to be rich!