Cure Magazine Seminar

[michele u]

Steph, i decided to put this here.

The seminar was very inspiring. Well, maybe mostly because it was in San Diego!! I envy Joe and Christine.
On the breast cancer part, i really didn't learn much. I guess i did learn that even the dr's don't know!! There were alot of things i didn't agree on. And alot of other people were noding their heads no also! The thing i did come home with from that, is that Her2 breast cancer is not the aweful, yucky thing they thought it was 2 years ago. Now they are talking about the triple negative women and not us for a change! Triple negative meaning er/pr negative and Her2 negative. There is an increase of this now. I know 3 gals locally that have this.
Other then that, there was alot of good stuff on Yoga, Healing through excercise, and Herbs and supplements. There is a book called Healing Yoga, by Lisa Holtby. It has pictures for us that need to visualize a Yoga pose!
I met Gina and "Sherry" from this website. Sherry is a very beautiful person inside and out. She has beautiful dark hair growing back in. She climbs mountains and looks like it too. Just being next to her you feel better. And then there is Gina. Gina has all this energy for 10 bottled up in one body. She's pretty,smart,cheerful and nice. Oh, did i mention she has lots of energy? Gina, if given the right monies and resources, she could cure Her2 breast cancer within the year! I love her enthusiasium for life and healing. I just met these women and it seems like i've known them forever. That's what this website is all about. And i also got to meet up with Audrey again for the 3rd time. She is so sweet and i think of her as my sister, since i don't have one.
The other thing i learned from this experience is that we are not alone in our struggles with cancer. We come in all different shaped and sizes. I also discovered that one can't tell the cancer patients from the staff! Cancer patients are "blending" in with everyone. Life does go on for us, and i learned that you should not DIE before you DIE !!!!!!!!

[al from Canada]

Thanks for the report, Michele!

What you said is exactly what I love about this group: everyone is so positive and we all have 100% unconditional positive regard and respect for eachother! Ambassadors like yourself, spreading the world, will hopefully get society to drop the stigma associated with that "C" word. You know, within 1 month of Linda going public with her disease, she lost (more or less permanent) contact with 90% of her personal and professional friends, meaning THEY dropped her! In fact, this past 3 months, she started hearing back from people on a more regular basis, who she hasn't heard from in over 2 years. That's right...it was 2 years ago this month....

Take care,
Al

[sherri]

As Michele said, the Seminar was very inspiring and well done. I enjoyed a lot, and more than anything it was a pleasure to meet and know, Gina, Michele, Joe, Steph, Audrey and so many other brilliant people that have been touched by cancer. It seems Cancer and especially Breast Cancer is more like a chronical disease these days than a fatal one. Michele’s Mom was there and you could see in her eyes there is only one thing in this world that can make her happy; to see the day that Michele will tell her Mom I’m cured forever. There is no doubt so many mothers fathers children husbands sisters and brothers would love to hear the word “Cure”. With a team effort we can do so much, we are here for each other, we support and love each other and I think this is the meaning of being Human.

It would be great to live in the moment; if we can learn to live in the moment we live in peace.

Steph and Joe thank you for making this excellent site. Hope to see you soon.

Love and peace,

[tammymarie1971]

Hi Michele, Thanks for posting about your weekend. I met "Sherry" last Tuesday, when I went in for treatment..turns out we have the same onc!!! She is beautiful isn't she, I hope she told Gina that I want to be the president of her fan club..I'm just amazed at Gina's knowledge. It's good to hear that being her2pos isn't considered the big bad diagnosis as much. Although I do feel bad for the negative ones because it did seem for awhile that her2pos was getting all the attention and research, I just want them to find a CURE period!!! Anyway take care Michele,
Tammy

[tammymarie1971]

Hi Sherry, It was really great meeting you last week!! My household is all a buzz because we leave for Disneyland on Thursday am!!!! It should be alot of fun....although I'm thinkin' that I may need a drink or two..or three after trying to keep up with the 4 kids for a week in the "most wonderful place on earth"!!!!!! Anyway take care and maybe our appt's will co-inside again!!
Tammy

[sherri]

Hi Tammy,

I told Gina about fan club. You will be the president! You don't beleive she had 2 huge binders with all the records from day one, very organized, graphs etc... Next time you have to join us; it was great. I'm sure you would enjoy it. Tell me next time you will be at LG, we can go for lunch before herceptin.

[tammymarie1971]

Thanks Sherri, that would be great!!
Tammy

[Audrey]

Hi everyone, just wanted to add my thoughts about the CURE conference--it was wonderful to see so many survivors and hear their inspirational stories--we met a woman who has been dealing with BC with liver mets since 1993! So much progress is being made, I'm feeling much more hopeful these days..I loved meeting Joe & Christine and being able to thank them in person for their dedication to this site...When I was first diagnosed 4 years ago I had a hard time finding info. about Herceptin and was soooo happy to discover this site and its wealth of information. Gina & Sherri, it was so good to meet you--you are both such strong, fascinating and postive women! Michele, I miss you already..you are truly my kindred spirit. Finally, we also heard a great lecture from Dr. Phillip Berman about his cancer journey and remarkable progress against metastatic lung cancer--check out his website at www.RedToeNail.org (http://www.RedToeNail.org).

[Gina]

Hi, everybody,

The Cure Conference truly came off well. Special thanks to Audrey for remembering to post the www.RedToeNail.org (http://www.RedToeNail.org) web-site. I had to agree with Michelle, though, that some of the breast cancer info was not as in-depth or current as it could have been and there were at least several occasions that found me shaking my head in disagreement and at least once in total disbelief with me ready to jump on my soap box (smile...yes, in addition to 3-ring binders I also always bring the soap box with me..hee hee hee). We met some truly inspiring people and of course, got to see each other in person! It is just fascinating to get to know someone on the net and then, meet them in person and find out that they are EVEN nicer and more interesting in the flesh. Thanks to Shoreh/Sherri on the board for everything and most of all for convincing me to pull myself away from the hustle and bustle here in DC and take a chance on heading West. It was the best decision I have made in a long time. Yes, TammieMarie1971, you are lucky to get treated alongside Shoreh and are in good company with all of us on this board. I hope you survived Disneyland... Of all the workshops, probably the one I most enjoyed was on healing touch. We actually got to learn a bit and practice on each other. FOR THE RECORD, folks, all the good comments we heard about REIKI drove me to my very first session by the end of this week. I will post my sensations and experiences under a separate thread. Overall, I found the Reiki to be very relaxing and would highly recommend it. For those of you who have tried healing touch, it is very similar, the practicioner doesn't really lay hands on you too much, but mostly works the "energy field" about 2 inches above your body. It seems slightly more religious/prayer - based than healing touch. The advice I was given by a girl at the Cure conference was to just relax and try your best to be very open to it...as I am more empirically minded, these things are harder for me to just "accept" on "faith", but still, even for this die-hard empiricist, I did find the session beneficial.

The OTHER BIG thing I brought back with me from our conference was a renewed emphasis on each one of us being our own clinical trial...meaning, that like some of the amazing survivor stories we heard, we, too, have much to contribute to our own care and well-being, and to research. Just like the physicists are recruiting folks' unused computer time to work on complex space problems--such as locating other M-class planets, I think we all should start organizing our entire case histories in journals, notebooks, binders, or on the computer in such a way that our information can be easily made available to places like Genentech and to independent researchers like Dr. Slamon and Dr. Menendez. Even though one story is just considered anecdotal, if you put your story with another person's and another and another, certain patterns will begin to emerge that might point the researchers SOONER in the right direction. Gun shot gene studies are fine, but they must work through every possible combination of practically infinite possibilities before landing on the one or two that mean something. We can speed up the process with our own REAL LIFE data that we are getting regularly anyway (bloodwork, Scan results, types of chemo we 've tried, side effects experienced, and the outcomes, etc.) similarly to how the time on our unused hard-drives speeds the search for planets and what not. My point is, we already have THE INFORMATION to solve the her-2 problem between us all, the problem is it is not in any type of organization that we can easily interpret. Also, NEVER UNDERESTIMATE THE VALUE OF ONE PERSON's EXPERIENCE, even though the whole oncology world tends to discredit this every day. What I mean is though it may only be anecdotal, what you experienced along your her-2 journey is quite real. When I used to work in construction and a piece of complex machinery went down--say it was an air-compressor, we did not suddenly drop everything and go out and find 200 other broken air-compressors and set up a trial to see what happened to ours...No, what we did was take the one broken air-compressor apart until we found out what was causing the problem and only AFTER we isolated THE CAUSE, did we then, move on to finding the solution. To my mind, far too many cancer research dollars have been spent on finding a supposed "CURE". That is like putting the cart before the horse. I think now is the time for us all to take a long look at our own cases and see if together we can isolate a unique cause, or more likely, sub-categories of cause. For instance, it seems highly probable that there is something unique about the ER-PR-her-2+++ cases. Similarly, there must be something unique driving the ER+ cases. Herceptin, great though it is, is still at best too far downstream from what is causing the her-2 to over-express in the first place to be considered a true cure. And sadly to say, despite what we are hearing in the media lately about early stagers being "cured"...remember, the longest followed so far are only about 3 years out and a lot can happen in year 4 and year 5 that is not at this time predictable. As I mentioned in a rebuttal at the conference and as I have said here...I am seeing women treated 4 years ago with the standand CA or CAF plus Taxol plus rad treatments followed by one year of Herceptin back in the onc's office now, four years later, with mets EVERYWHERE...this is no joke and it is TERRIBLY scary. Her-2 mediated cancer is serious business. That is why we all need to do whatever we can with the information we do have to finally, once and for all, solve the her-2 part of the puzzle so we can ALL sleep a little easier, knowing that others will never have to go through what we have, and maybe, just maybe as an unexpected value added benefit, those of us still struggling with her-2, can once and for all truly get our REAL lives back. As I am fond of saying folks, this is not ROCKET science....smile....smile.

My highest regards to you all,
Gina