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

micheleu 01-16-2009 10:05 PM

5 year's out from stage 3 Her2 pos 35 pos nodes
I thought i needed to post hear for anyone new to this site. There is so much hope for us! My tumor was only 1 cm and when they did my axillary dissection, they found all 35 nodes positive! I'm er/pr negative. I did A/C then 12 weekly Taxols followed by one year of Herceptin. I begged my onc. for another year of Herceptin and they all said NO. I was so dissappointed but looking back, they were right! I also did a HER2 vaccine trial at Seattle WA at the Tumor Vaccine Group. My dr's told me I was not going to make it. I was 39 with 3 small children. I was forced into thinking about what I was going to wear in my coffin, and I hated that! Now looking back I know i was lucky to be dx when Herceptin was available. I took it in a trial and that was my only hope. I'm a nurse and I knew what my chances were. I just gave up for 2 years. I looked for anything I could do, like the vaccine trial, but I didn't think I would make it. Then after about 2 years, I kept waking up thinking, wow, my cancer has not come back yet. They said it would. Maybe....just maybe it won't! I don't think it really sunk in until the results of the Herceptin trial were coming out. There was ALOT of other women thinking the same thing...that their cancer was going to come back, and it DIDNT! Anyone newly dx reading this, I want you to know, you are NOT alone. You have alot of us on this site that are ALOT of years out with a bad prognosis. YOU CAN be that one like us....5...10 years out NED!!!! Come to this site when down. Come to this site when you need encouragement. Come to this site to see that God has given us another chance!

Patty F 01-17-2009 12:31 PM

Congratulations on 5 years. You give all of us hope.

Midwest Alice 01-17-2009 06:59 PM

Yes, God is great to us every single day. Your story is a blessing to us all.

Laurel 01-18-2009 05:15 PM

Thanks for the uplifting post! I am so glad you are well! I'm beginning to belief I will be here for a long time to hassle my kids!

flyrzfan 01-18-2009 06:32 PM

Thank you for sharing and congratulations!!!!!

Shobha 01-19-2009 08:33 AM

Thank you for sharing this wonderful news! You really do give me so much hope. I have two small children, 6 and 4. I too keep looking for vaccine trials that I can get on...every little ache or pain gets me worried for their future.

But your post is really uplifting. Thanks again! May God bless you with continued good health.

schoolteacher 01-19-2009 11:00 AM


Thank you for posting. This gives me HOPE.


caya 01-24-2009 08:46 PM

Thanks for posting this FANTASTIC news Michele - 5 years out - WOW!! I wish you many many more years of NED!!

all the best

ElaineM 01-24-2009 08:52 PM

5 year's out from stage 3
Blessings to you. Thanks for sharing your good news.

Leslie304 09-07-2009 03:54 PM

5 year's out from stage 3 Her2 pos 35 pos nodes
WoW! I needed that! Thank you so much for that posting back in January. See, even nine months later you are uplifting and inspiring those of us who are scanning this site for HOPE! You have given me renewed hope! Thank you, thank you, thank you!

What about the vaccine? I haven't heard much of it. Are they recommending it at the end of treatment? I've been pretty non responsive to all neoadjuvant treatment and hoping to get to surgery soon. I keep telling my body we can do this, we can heal from this!

Rozebud 12-02-2009 11:51 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Michele - I haven't been on this site for a LONG time! I was thinking about you the other day. Congrats on 5 years! Like you, I'll hit 6 years in just a couple of months. I too was told I had horrible odds. Herceptin changed everything - thank you LORD for herceptin!!


schoolteacher 12-02-2009 12:13 PM

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

Thanks for sharing your encouraging information.


Sandra in GA 12-03-2009 01:03 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
I think you are the only one who has had more positive nodes removed than me. I find you to be an inspiration. Like you, I am also a nurse ever though I had gotten an educational degree when my kids were in college and taught first grade for about 15 years. However, I still maintain my RN liscense. Having enough knowledge to know what the doctors ard talking about has its advantages and disadvantages. When I started reseaching HER2, (I had not been working the medical field for almost 20 years and had never heard of it) I got scared to death. After almost a year of treatments, I found this site and now I come here often for the research, stories of survivors, and encouragement to others. This is a wonderful place to visit.

I finished my Herceptin and lapatinib phase II trial for early HER2+ breast cancer (stage III doesn't sound early) November 17th. I am now hoping to get into a vaccine trial. First I have to deal with these cataracts that the Decadron caused. My first surgery is next Tuesday and then the other one will be on Dec. 29th.

Your sixth anniversary is coming soon! I hope and pray that you are still NED!

micheleu 12-05-2009 10:49 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Sandra, I am now 6 years and 4 months out NED! I see that the dr.'s are giving alot of the newly dx stage 3 women Herceptin and Tykerb. That's awesome! I did take Tykerb 3months (off label). I stopped due to side effects (diarrhea). Doing really well, except for some swelling and pain in affected arm, nothing i can't LIVE with!

Sandra in GA 12-06-2009 02:35 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Yeah, that diarrhea is something else. Before I got to that phase in my treatment, they had already reduced the dosage from 1000 mg/day to 750. They had to reduce my dosage further to 500 mg/day during the Taxol phase. Durng the rest of the year, I had 750 but was never able to get to 1000 which was what they really wanted. I think being at the end of a study sometimes has its advantages! Even though I didn't take the max dose, I still feel very lucky to have gotten it. They have already started a phase III study with one arm being like the treatment I got, another just Herceptin, another just Tykerb, and one with Herceptin and Tykerb and no standard chemo. I am actually glad that I got the "all the big guns." But, it is wonderful to not have a tummy ache after having one for a full year! I like to think that those three months are what has helped you reach this awsome NED status for over six years!

I too am having some swelling in my left arm. I had an episode last week that was strange. I felt some pain and soreness during the night, then when I was getting dressed the next morning, I noticed a red area larger than a half dollar on my upper arm with a large streak going about half way around it. It was very warm and very sore. Since it was Sat., I called the on-call dr and she prescribed antibiotics. It responded very nicely and the residual lump under the skin went away after a week of treatment. I had no cuts, bruises, or any injury to that arm that I was aware of. I do still have extra swelling which I seem to retain under my arm in my surgical area. Has anything like this happened to you? My left arm is my predominate one since I had Polio at a very young age that left me with very limited use of my right. I knew that I would have to be careful not to injure my left arm and hand, but I do have to use it a lot. If you have any advice for me, I would appreciate it.

Thank you for responding and sharing your history with me! STAY NED!!!

Chris B. 12-06-2009 04:57 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
My diagnosis is so similar to yours. I was diagnosed stage 3B in December 2006. I had a lumpectomy and lymph node dissection. I had 17 cancerous lymph nodes out of 17 they removed. I had agressive chemo, followed by 37 rounds of radiation and a year of Herceptin. I am doing fine and coming up on my third year NED!! Prognosis was very poor, but here I am. I worry every day, but know I am in God's hands.

Sandra in GA 12-06-2009 07:11 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Thank you for posting. I am sure there are more of us out there but it is reassuring to know for sure there is another. My surgeon was very surprised when my scans were clear and I did not have mets in my bones or other organs. There was one spot on my left lung that was questionable, but my onc said it was too small to biopsy. It was not been mentioned on my subsequest scan, so if it was something the treatments have wiped it out. I agree with you, we are in God's hands. I feel He certainly led me down to Mayo when I found my lump.

krisvell 12-09-2009 10:43 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Congratulations on your great success. Reading your post brought tears of joy for you and encouragement for me. THANK you for sharing.

Do you have any suggestions how to pursue the HER2vaccine trial?

lkc Gumby 12-19-2009 11:17 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
Hi All, Just wanted to tell the new ladies. I am out 4 yrs 7 mos ( but who's counting) from Stage IIIC with 12 pos nodes, blah , blah blah. I am doing great, no problems.
( this after a really dismal prognosis)
Don't beleive the stats, they're outdated ,and much much more women are out there living their lives!!
God Bless.

Louise Limehouse 03-10-2010 10:08 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
I'll never forget my dr. saying "there's a new drug, Herceptin...it's the biggest breakthrough in breast cancer treatment since I've been practicing!" I thought, oh that's nice. Little did I know how very serious he was and that it would be the savior of many, many women, including many of you and myself! What a blessing it's been in my life and I can't wait till he says, "we've made a bigger discovery than Herceptin, and it's going to put an end to BC losses!" Congratulations to all who are fighting the good fight!

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