Has anyone here had a consultation with Dr. Slamon at UCLA?

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deenah
deenah Member Posts: 178
edited June 2014 in HER2+ (Positive) Breast Cancer

I am so excited to be meeting with him next month about my case!  I am just trying to figure out what to do after radiation to decrease my odds of recurrance, and who better to ask than Dr. Slamon about HER2 breast cancer right?  Just wondering if anyone else has met with him, and if so, what was your experience? 

I am really hoping he will have some more clearcut answers for me than I am getting elsewhere.  I know, nothing is clearcut with cancer, but I feel better just knowing I am meeting with him.  Even the other doctors I have met with (UCSF, Stanford and my local doc) are very interested to see what he thinks.  

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  • heathermcd
    heathermcd Member Posts: 142
    edited October 2010

    Please let us know what he says!

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  • PlantLover
    PlantLover Member Posts: 622
    edited August 2013

    Wow, just wow.  I assumed he didn't actually meet with patients anymore and would just be focused on research.

    I have a rather silly request.  I would really like to write him a thank you letter.  If I did, could I send it to you to give to him?  I know this sounds stupid but it would really mean a great deal to me to be able to express to him how much I appreciate all I've understood he did to make Herceptin available.I know without that drug the chances of me surviving the outcome of my diagnosis would have been much MUCH worse.  

    Oh and good luck to you! 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2010

    I echo the thoughts here, would love to know what you come away with? Would also love to know how Herceptin works for those in stage 1-3 for example is it staving off cancer cells or does it have death pathways (I have been told this by other Oncs) that can actually cure Her2?

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  • deenah
    deenah Member Posts: 178
    edited October 2010

    I will definitely let you know what he says!

    Bec - I would be happy to deliver a letter for you!  Did you want to just email it to me and I can print it out or did you want to handwrite it?  I can do either.  Just email me and let me know.  My appt is a ways off, and actually hasn't even been firmed up yet.  I didn't know he saw patients anymore either.  Apparently he only does consults and only does them 1 day a month.  Since I wouldn't be treated in LA, a consult is just fine with me!

    I know I am going to want to hug him when I meet him.  I am so grateful to him for doing all he did to get Herceptin out there for us to use.  It most definitely may have saved my life.  Without it I would be a dead woman.  

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  • lexi4
    lexi4 Member Posts: 1,074
    edited August 2013

    deenah,

    I am excited for you. Curious to know what he thinks about your case, too. Sounds like a great opportunity!

    Lexi

    p.s. I am so grateful for herceptin. I truly don't believe I would be doing well w/out it.

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  • PlantLover
    PlantLover Member Posts: 622
    edited August 2013

    Deenah - thanks so much.  If you're comfortable letting me mail it to you, I'd lke to hand write it. I would certainly understand if you'd rather me just email it to you here.  Just message me and let me know which would be better.  When I saw your reponse I yelled for my husband to let him know. I feel like a kid at Christmas - "Oh honey, I'm going to get to write to Doctor Slamon and someone is actually going to hand deliver it to him.  Can you believe it - I get to tell him how much his fight for the drug is helping me with mine.  I should start working on it right away!" *silly school girl giggle*

    Good thing my husband puts up with all my passionate outbursts and loves me anyway. ;)

    Thank you - oh wait, I already said that. Again - good luck to you! 

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  • weety
    weety Member Posts: 1,163
    edited October 2010

    I saw him speak at a breast cancer symposium I went to last year with my oncologist.  He was amazing!  I felt so in awe, though, so I can totally relate to you wanting to give him a hug!  I think the thank you note is a great idea!  I'm sure he already knows, but he really has touched so many lives with his knowledge, ambition and passion, that it can't hurt to keep reminding him!

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited October 2010

    deenah: On this board, Dr. Slamon has rock star status! Please let us know how your consulttion goes - and let him know how appreciated he is. I saw him speak on Stand Up 2 Cancer - he's the head of the breast cancer research "dream team." They have such a great model - all the money goes to research teams who all share their knowledge.

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  • lisasinglem
    lisasinglem Member Posts: 315
    edited October 2010

    Congratulations on getting a consult.  Please let us know what he says! 

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  • kim40
    kim40 Member Posts: 904
    edited October 2010

    Deenah!  I'm so excited for you!  That is awesome!  Would it be ok if I in-boxed you with a letter that you can give to him also for me?  I feel like I owe him something!  Please let us know what he says.

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  • amlg1
    amlg1 Member Posts: 596
    edited October 2010

    We are all so thankful and grateful for his persistance with herceptin,give him a big HUG from me too!

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  • starella
    starella Member Posts: 159
    edited October 2010

    how was the appointment? did he say anything has changed about the tch chemo for her2?

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  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited October 2010

    I've met him briefly - he is a friend of my cousins and so when my Dad was dx'ed with bc he stepped in to check and see if Dad was Herceptin+ which he wasn't.. but it was incredible sweet of Dr. Slamon and he comes across as a very dedicated, warm and kind individual..  We were amazed that this very busy man took time to see Dad and help us out at a time when we were so confused as to what to do next, I believe though that Dr. Glassman was doing the clinical side of thing then but he was still at UCLA main campus then..  He has worked with Revlon now for many years at the women's center... I'd love to hear your experience too.  Good luck Deena if he can be of help I'm sure he will - Good luck!!!1  Best, Deirdre

    http://www.cancer.ucla.edu/Index.aspx?page=367

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited October 2010

    Wow!  I live in Sacramento too, we should meet up so I can be one degree away from him.  LOL.  Please report back your meeting.  Thanks!

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  • deenah
    deenah Member Posts: 178
    edited November 2010

    I have an official appointment now.  November 22nd it is! I can't wait to meet him and see what he thinks I should do with my treatment after rads.  I'll report back after the appointment.  I wonder if he'll let me take a pic with him!

    Cool - Wow, where in Sac are you?  I'm in Roseville.  

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2010

    I'm in the county - Arden Arcade area.  

    I'm very excited for your appointment.  Make sure he knows that to us HER2 cancer patients, he's like a rockstar.  :)  But, after that, get us information!   I'd like to know if there are any numbers past the first few years - if he has any idea if herceptin remains effective. 

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  • PlantLover
    PlantLover Member Posts: 622
    edited November 2010

    I'm so sorry I didn't get time to write my letter but please share with us how it went when you get time!

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  • waterlady
    waterlady Member Posts: 56
    edited November 2010

    I met him, as I see Dr Hurvitz, the doctor he works with, and I got to say thank you to him, for saving my life.  He is very tall, humble and simply amazing.  You are in the best hands possible.

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  • Chelee
    Chelee Member Posts: 513
    edited November 2010

    deenah,  I've been out to see Dr. Slamon twice...he is totally AWESOME.  What a truly caring, compassionate and highly intelligent onc/man he is.  I'm hoping you will see this and let us know how your appt with Dr. Slamon went?  I had talked to you a little about this on the her2 board so I'm quite intereted?  Plus it's just the simple fact that Dr. S is on the cutting edge of things.  What was his recommendations for you?  Let us know how your doing when you have a chance. 

    Chelee

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  • lovetosail
    lovetosail Member Posts: 544
    edited December 2010

    Hey waterlady - Sara Hurvitz is my onc too!  She's great. With Dr. S and Dr. H, UCLA does have a great team in place for HER2+ patients!

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  • weety
    weety Member Posts: 1,163
    edited December 2010

    I saw Olga Levetsky at UCLA, but just for a 2nd opionion.  (my insurance doesn't cover ucla)  Do allof their oncs work closely as a team with Dr. Slamon?

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited December 2010

    So, how did it go?  Don't leave us hanging!

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  • Chelee
    Chelee Member Posts: 513
    edited December 2010

    I'm wondering if Deenha went some where for vacation?  Visting relatives or something?  I wrote her a message on another board...and also on this one?  So far no reply?  I'm so curious as to how it went.  I've been out to see Dr. Slamon twice and felt so much better after seeing him.  I know she was really looking forward to it.  I hope all is ok?  If your out there Deenha...your bc sisters are waiting to hear from you. 

    Chelee

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited December 2010

    Deenah,

    I just saw a movie about Dr. Slamon at UCLA with Harry Connick jR. portraying him this evening.  This movie was called "Living Proof" and was about the trials of getting Herceptin FDA approved.  I had tears in my eyes--it was so touching.  I personally don't know him but I know after watching this that you are in very good hands.  He actually is the scientific Doctor that created Herceptin that saves so many bc lives.  I'm not her2+ but I was so touched by his movie.

    Terri

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  • Chelee
    Chelee Member Posts: 513
    edited December 2010

    Hi Terri, Living Proof was an excellent movie...and made me appreciate how hard Dr. Slamon worked to bring this life saving drug Herceptin to us.  This one drug alone changed the outcome of bc for so many women.  (In fact it's time they up date the stats that should include the use of Herceptin after all this time.)  Most of us Her2 gals have watched that movie...and I think each one of us had tears run down our face. 

    I sure wish Deenah would check in here.  I do think she was finishing up radiation & If that's the case she may be REALLY tired/fatigued?  Or maybe Dr. Slamon has her set up for a trial to enroll in?  If that was the case that alone would keep her REALLY busy.  To get started in a trial is alot of back and forth for labs and scans.  I almost entered one and it was unreal the amount of calls I was getting to come down for labs, PET, CT, bone scan, etc..  I was truly over whelmed by it. But I sure hope Deenah got some good feedback from her appt with Dr. S?  I'd love to know what his recommendations were for her?  At least so she walked away with peace of mind...it's so hard making all these decisions.

    Deenah...the suspense is becoming too much.  We would love to hear from you if you get a minute to come up for air.   I sure hope all is well on your end?  I've kept you in my thoughts and prayers. 

     Chelee 

      

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  • Lady_Madonna
    Lady_Madonna Member Posts: 472
    edited December 2010

    Hey everybody, Just wanted to let you know that deenah posted about her meeting with Dr. S on the "Ladies in their 30's" forum the day after her appt.  If you click on her name you can read what she wrote there (she did take a picture with him :)

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  • Chelee
    Chelee Member Posts: 513
    edited December 2010

    Lady,

    Thanks so much for telling us that...I REALLY appreciate it.  Just a few minutes ago I logged on at the Her2 board and noticed she posted there yesterday...so planned on PMing her.  She probably forgot she posted this thread...I know I've done that far too many times over the last 5 yrs.  As a cancer patient we have so much to keep track of...it's overwhelming, stressful and pure exhausting at times.

    But again...thank you Lady, I'm going to jump over to the other forum and see how it went for her? :)

    Chelee

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  • deenah
    deenah Member Posts: 178
    edited December 2010

    I did forget I posted this!!  I usually get email notices when people respond to a post I started, and I never got any for this.  That is how I am usually reminded!  So sorry to have left you all hanging!  Hopefully you were able to hop over to my other post with the update. I have also been sick with  bronchitis.  This put me behind with my Christmas stuff, so I have been digging out for the past few days.  I finally feel like I'm back on track though.  Thanks for thinking of me!

    I loved the movie Living Proof so much that I bought it on Amazon.  I loan it out to people who are interested.  Right now there is a woman in my support group with HER2 BC who hadn't even heard of it, so I'm loaning it to her.  I have to say, it was a little strange meeting Dr. Slamon and not having him look anything like Harry Connick, Jr.!  Even though I knew he wouldn't.  

    My latest news is that I just found out yesterday that I got into the Univ. of WA vaccine trial.  I am so excited about it!!  First trip up there is Jan 13th.  Now I have to contact American Cancer Society to see if there is any assistance for airfare since we have to fly up there 7 times in 7 months.  That will add up!

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