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-   -   5 year's out from stage 3 Her2 pos 35 pos nodes (https://her2support.org/vbulletin/showthread.php?t=37614)

evergreen 04-30-2012 08:14 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Wow, it is so good to know I am not alone, and that there may be hope. I am also so grateful for herceptin, and found it very easy to tolerate!

Jackie07 07-24-2012 12:17 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Bumpt this one up...

Sandra in GA 08-13-2012 09:03 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Not five years yet. Did just make the four year mark!

evergreen 08-13-2012 10:14 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Congratulations on your four year accomplishment!
I live in Canada. How can I find out about participation in the vaccine studies? Anyone know?
Also, what factors do you credit your great result to? Do you exercise? Any special diet factors?

Sandra in GA 08-13-2012 10:30 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
http://clinicaltrials.gov/ct2/show/N...cine%22&rank=1
This is the website for the trial I am just completing in September. If I were you I would contact one of the sites in Washington state or Washington DC, which ever is closest. I truly don't know if this is what has helped me so much or being in the trial at Mayo that allowed me to get Tykerb along with the Herceptin. I just know that I feel really good and strong.

This particular trial is looking at two vaccines. Most only look at one. We have a blood factor called HLA-A2 that affects how ouw bodies respond to vaccines and building antibodies. Most trials only accept aplicants if one is positive to this factor, this trial has another are looking at a vaccine called EA37 that more vigoriously stimulates the bodies of us negative folks.

Please feel free to PM me about more details.

Good luck!
Sandra

evergreen 08-13-2012 05:59 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Thank you so much for this quick reply. I am going to do some research on this this week! It is so helpful to have his sharing....

ljbm 09-08-2012 08:26 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Yesterday was 5 years since my diagnosis from stage III. I thank God every day for this blessing. Blessings to you all.

evergreen 09-08-2012 08:39 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Congratulations to you, ljbm! I am sure all of us share in your joy!

prolifejoan 11-02-2012 07:43 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear Michele and All,

This is my first day on this forum, after discovering a cancerous lump on December 1, 2011. My stats are in my signature line (thanks to Jackie for teaching me how to do this) so I won't repeat them here. I have been reading a lot about my type of cancer, and like you, MicheleU, I thought I had better start preparing for the end, and I have been thinking about choosing the readings and songs for my funeral Mass.

But reading the posts on this page has given me hope. I want to get into a vaccine program!
I have a double mastectomy scheduled on November 16th by the awesome Dr. Habal in Greenville, NC www.carolinabreast.com, so I have a question. After a bilateral mastectomy, are we still eligible for a vaccine trial? We live in North Carolina and I am willing to fly anywhere for this. My Herceptin will resume after the drain cups are out from my surgery, and I will be taking it every three weeks through July 2013, and then will I be eligible for a vaccine trial?

God bless you wonderful ladies, your positive attitude and gift of the great and very real virtue of Hope has done more for me today, this night here on the East Coast, than you will ever know. Please know that all of the wonderful people in this forum will be included in my prayers, beginning tonight. God bless you!

'lizbeth 11-02-2012 08:32 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Prolife,

You should be able to participate in the clinical trial that SandraGA and I were in if you enroll within 6 months of finishing Herceptin.

A bilateral mastectomy will not disqualify you. You can visit the page for the AE37/GP2 clinical trial here:

http://clinicaltrials.gov/ct2/show/NCT00524277

and there is a site in North Carolina:
United States, North Carolina Wake Forest University Comprehensive Cancer Center Recruiting Winston-Salem, North Carolina, United States, 27157-1096 Contact: Robin Petro, RN 336-713-4788 rpetro@wfubmc.edu Principal Investigator: John Stewart, IV, MD Sub-Investigator: Perry Shen, MD Sub-Investigator: Edward Levine, MD
I would love to see you join us vacciners.

Gaver 11-03-2012 05:46 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear Michele,

It was so amazing to read your post and hats off to u !!! u r one strong woman !!!

Thanku for the hope !!!!

NanaJoni 11-03-2012 08:47 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Joan - I laughed when I read your post. And I know, cancer is not funny. But I did some of the same things as you: planning my funeral, picking out readings, etc. Now almost 3 years later, I've changed my mind of most of what I had planned back then so I told my kids to just do whatever they want cause I'm going to be so old when I die that I'll forget I ever made those plans. You will find a lot of hope and really good information here and support from a wonderful group of people. I had a bi-lateral back in 2010 and it's tough surgery but you'll get through it just fine. Having a doctor you like is really important and your "let's go get this thing" attitude will kick cancer's butt. Hope your day in NC is as beautiful as it is here in East Tennessee.

prolifejoan 11-03-2012 09:39 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear NanaJoni,

Thank you so very much, and I appreciate your sincerity and candor in telling me that you laughed when you read my post. I don't need to be taking myself too seriously on top of everything else that is going on. Your journey is very inspiring to me and I am very grateful to be on this forum. Thank you so much for your encouraging post. God bless you!

prolifejoan 11-03-2012 09:41 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear "lizabeth,

Thank you so very much for this information! God bless you!

NanaJoni 11-03-2012 09:48 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Joan - I hope you don't think I was laughing at you - only at myself and cancer (I tend to laugh at the scary things in life sometimes). I did my share of crying and praying and begging. But I hope you can take away from that the hope for a future filled with joy. And many years to watch that beautiful baby growing up. I have five grandchildren and each year with them is so precious.

prolifejoan 11-03-2012 09:58 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear NanaJoni,

I absolutely understand and I am grateful for your post to me because
you helped me to "lighten up" a little. That is what I needed to do. I am not in denial, I take serious things seriously, but I sure could use some JOY right now, and I know that the Joy the Lord gives us is lasting Joy, no matter what happens. I just hope for the best, for myself as well as for every person in this forum, and for everyone who is dealing with trials and struggles, no matter what form they take.

Don't worry, NanaJoni, your goodwill shines through and you truly do give me much hope! God bless you! That cute little boy I am holding is the son of a friend of mine, whom I visited in North Dakota in
the summer of 2010. That little boy, Zeb, already has a little sister! He is #7 in a very beautiful and loving family. We have twin grandsons, 5, with our oldest daughter and a 10 month old grandson who is the only grandchild who lives nearby. We also have 2 grown grandchildren and a great granddaughter with our oldest foster son who came to live with us in 1978 when he was 14. We are greatly blessed.

Sandra in GA 11-04-2012 10:11 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Hi Joan,
I have been off my computer the past few days working in camellias. My husband and I show and judge blooms and we have a show coming up this weekend. I just looked at my email tonight.

In October I just completed the vaccine trial 'lizbeth told you about. I am so happy I was able to do it. I traveled from south Georgia and it was worth every mile. I had 21 positive nodes and had a double mastectomy at the beginning. That is a great incentive to try and get a little extra treatment. What I liked about this trial is they are looking at two vaccines. The main criterior is that you are three months past Herceptin.

I went to Wake Forest Medical Center in Winston-Salem and absolutly love the study nurse, Robin Petro. The number posted on the study site is her direct number. She is a delight to talk to and will help you in any way she can to get into the strudy. I would advise you to call her tomorrow.

Good luck and please feel free to pm me if you like.
Sandra

prolifejoan 11-27-2012 02:55 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Michelle and ladies, I found my lump on December 1st, 2011, and am currently recovering from a bilateral mastectomy performed by the great Dr. N. Habal www.carolinabreast.com. My mastectomy, which included the removal of three lymph nodes on the left side, was CLEAR. However, we are still dealing with last year's diagnosis, which included 17 positive lymph nodes on the right side. I have been receiving Herceptin since the first week of July. I received it every week from July through October, 12 cycles all together, then began 600 mg to receive every three weeks. I had ONE of those before surgery, and I am one of those who gets side effects from Herceptin. My hands, feet and face are still numb and tingly, and I get brain fog, and am uncoordinated. It has been six weeks since my last Herceptin cycle and tomorrow we will schedule resuming them. I will be taking Herceptin until next August, then I hope to be involved in an HER2 vaccination somewhere. I recently asked my oncologist if I could please micro-manage my intake of Herceptin, possibly 40 mg daily or 200 each week instead of 600 all at once every three weeks. I think he is willing, but the insurance co. may not be.
I am thanking God for every day of my life and trying to do the best I can. I am also praying for every person who is dealing with cancer and who is in remission, and for all families. God bless you all and thank you for being such wonderful inspirations.

Jackie07 11-27-2012 05:26 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Hi Joan,

There are threads discussing 'neuropathy'. You can used the 'Search' button to find them. My personal experience - mostly from the rehabilitation after my 23-hour brain surgery and 40-day hospitalization - is that 'exercise does wonders!' The nerve impulse of our neurons actually is conducted by tiny electricity 'jumping' over to connect each cell. The first several years I actually could 'feel' daily improvement - constantly telling my husband that 'I feel I'm smarter than yesterday!'

Try walking 30 minutes a day. I am confident you will 'feel' the improvement. [I was also paralyzed on my left side after the brain surgery in 1990. After 40 days rigorous rehab in the hospital, I walked out of the hospital with a cane. After another three weeks 'drilling' by my Oldest Brother, I was able to walk on my own. My gaity wasn't very good at the beginning. But after a year, I was able to dribble the basketball and shoot some hoops! ]

Eat a balanced meal as the tissue repairment requires lots and lots of good nutrients: protein, minerals, vitamins... etc.

It will get better. I'm sending you good vibes.

Ursula 01-04-2013 01:39 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear all

It was spring 2007 when Stage IIIb cancer was detected from my right breast. Now I'm happy to tell you that I am fine and truly ageing and dancing with NED.

Keep up the good spirit and never loose your faith!


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