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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

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

Midwest Alice 01-17-2009 06:59 PM

Michele,
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

Michele,

Thank you for posting. This gives me HOPE.

Amelia

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
caya

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!
Thanks!
Leslie

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!!

Rose

schoolteacher 12-02-2009 12:13 PM

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

Thanks for sharing your encouraging information.

Amelia

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

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

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
 
Chris,
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.
Sandra

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!

Renee Hithe 07-12-2010 08:54 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Thank all you ladies for sharing your storiess it is certainly a blessing to have others who have gone through the fire and are leaving their foot prints for me to follow and learn from thank you again for your guts to be part of trials and so on, this has allowed ladies like me to benefit from your guts to survive and thrive. renee

Leslie304 07-12-2010 09:58 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Congratulations Renee! Five years and many, many more! I hope to post the same report ..... in four more years :)

vlcarr 07-14-2010 11:35 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
I'm so glad I saw this. Being Stage III and just completing my year of treatment I'm now into life after cancer. Thank you so much for posting. I needed to see this today:)

Had my port removed last week!

Redwolf8812 07-22-2010 08:49 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
This is exactly what I needed to read (after Scriptures of course). I was diagnosed today with multicentric IDC in the left breast, 1/1 lymph node, ER-/PR-/HER2+++. So....a rare cancer that is aggressive huh? Nothing a child of God cannot handle.

I'm 41, 3 kids, ages 15, 13, and 6. Going for MRI, pet scan, bone scan, and chest xray next week, followed by mastectomy at least on the one side. Guess I should insist on bilateral mastectomy, huh?

Sandra in GA 07-23-2010 09:52 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
That is what I did when I learned I had HER2+ breast cancer and how aggressive it is. My surgeon was telling me there was no disease detected in my right breast and it could be saved. I just told her, "The decision has been made!" I am vert glad I made that decision. Good luck. Some good advice I received from another doctor was to make the best decision with the information I had and never look back. Second guessing can be a real downer and to survive this disease, one has to stay focused on the goal and stay positive.

Prayers are with you. This early time is very difficult.

Sandra

karent 08-01-2010 05:45 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
hi my name is karen i was reading your letter i live in australia and had the same her2 stage 3 i was told on my birthday in 2007 and i had not heard of anyone else with this type of breast cancer til i came on this site i an glad of herceptin 2 thank u for your post it has inspired me

Jackie07 08-01-2010 06:29 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Welcome, Karen, to this wonderful group.

We've got several members from Australia. You can look them up using the 'Search' button and then chek the Members List.

Many of us use the 'Signature' file to post our treatment history. You can put more details there so the 'newer' comers will be inspired by you as well. :)

There are more inspiring stories to be found in the 'long-term survivors' and 'long-time survivors' threads.

Welcome again and let's hear more from you.

msleslie 08-04-2010 09:11 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
I have just signed up for the Phase III ALTTO Clinical trial. I'm scheduled to begin chemo on Aug. 19th. I have to wait until my visit with the chemo nurse for lab work on Aug.16th to find out what arm I will be placed in. I'm prayerful that I will receive Tykerb in addition to the Taxotere, Carboplatin, & Herceptin.

Jackie07 09-12-2010 01:13 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Couldn't figure out (find) the Tony Jeffs that Rich had mentioned in Facebook. So I tought I'd bump up this thread...

micheleu 09-12-2010 07:44 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
To update this... I am now 7 years out!! I hope all stage 3 Her 2 pos women can see this post and have hope for themselves..I remember when I was dx i wanted to read stories of women that had it "worse then me" and still be around. Herceptin is a miracle drug!!

CDE 09-16-2010 12:04 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
I see that you had 3 months of Tykerb off label in your signature. How do people get on Tykerb at stage I/II for preventive care if I wanted my wife to do that?

Baumlisa 09-18-2010 03:00 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Dear Michelle,
May God bless you and your family, I have been fighting bc for 7 years and have been stage 4 for almost 4 years! Congrats and I hope herceptin works miracles for you, but for me it only worked 6 months...thank goodness for all the new drug therapies!
Lisa Baum

Joanna J 10-04-2010 12:51 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
You have given me hope,micheleu I had her2+ er- pr-stageIIa had chemo,37 rnds of radiation & a yr of Herceptin,sometimes I start losing hope & I come back to Her2 support & I start feeling hopeful ! you are a true inspiration,may god rihly bless you. Joanna J

audibme 08-08-2011 07:51 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Just a little more encouragement ladies. I'm 4 yrs 6 mos out from Stage 2, HER2+, 2 cm, clear nodes. Surgeon strongly suggested lumpectomy with radiation leaving golfball size hole in breast. I elected double masectomy. Biopsy showed another HER2+ tumor the lumpectomy would have left which did not show up on MRI. 5 months of chemo and 12 months of herceptin. In dr's waiting room on 2/09 I read an artical about herceptin and how it was FDA approved for earlier staged cancer in 11/08. Many Drs cried in the auditorum when this was anounced, b/c we had a very poor prognois without it. My advice.... when fear consumes you, you MUST count your blessings over and over. You will find you feel much better. Stay optimistic and stamp out the fear!!! Bless you all!!

Pray 08-12-2011 10:52 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Thank you everyone!! I can honestly say this is the most hopeful I 've felt since I was dx in Nov. 2009!!! ( never got passed the her2 section!)

JennyB 09-03-2011 09:54 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Is it just me being dumb or does it seem that there are more hormone neg stage 3 survivors than those who are ER/PR pos??

ljbm 09-08-2011 06:26 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
I'm not a member of the 5 year club yet but I'm working and praying I get there. I celebrated my 4 year diagnosis anniversary on Tuesday. I was 51 years old, clean mamogram in May and in August I accidentally found a lump. I am sorry to say that I did not do self-exams because I had lumpy breasts most of the time. I knew this one was different. Sure enough stage 3, (6.2 cm tumor)1/18 nodes positive, HER2+++. My family doctor told me to "go home and enjoy my life" which was probably a good thing. I got mad and sought state of the art treatment instead from MD Anderson instead of staying local. With the blesssings of God and the knowledge of MD Anderson, I'm still here and disease free. I had 15 months of chemo, radiation, and 1 year of herceptin. I am so blessed. I worked every day except chemo days. I did take off for radiation because of travel time. I'm 55 now and going stronger than ever. There is hope and life after a cancer diagnosis. I agree, you are not a statistic or a number. You are you. I put my numbers through one of those predictive calculators and they were not great, but I only did it once. Don't dwell on the negative and remember with God all things are possible. Also, stay away from negative people. They are just as toxic as cancer.

sandra digilio 12-06-2011 08:22 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
Wow all these comments and stories are really encouraging to me as a new member of this site. I was diagnoised with breast cancer in December 2009 then with metastatic cancer a couple of months ago. I have been through the ringer like most of us here. Recently on a scan it was discovered I have met in 3 bone areas and I'm due for a new scan this month to re-check these. Since my scan I have had my ovaries removed hoping to get rid of any extra estrogen my body is producing. I've been having a hard time knowing that since April of 2011 I had it travel to 3 different places it was so fast. It's now in my rib, back & sternum. I wanted to do a trial but at this time they say I have no measurable disease and I'm not eligible for any trials. For me the herceptin, tamoxifin and the bone strengthner alone are not cutting it. I want to switch to femora and try that now that my ovaries are gone. Lets all hope and pray they come out with a cure for this cancer... Peace out

candlegranny 12-07-2011 01:16 AM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
thank you Michele. I needed that post too. I did not have tykerb. why did they give you tykerb? Just wondering why I didnt get it. My doctor said I got the standard treatment and it worked so nothing else till it returns,. He told me 50/50 it will come back but i am standing on the good 50 side! i lost 31 nodes and 18 were positive. there was also 2 nodes with cancer in my neck they could not operate on, but chemo destroyed the cancer and radiation destroyed the nodes. I have stage 2 Lymphedema in my left arm. I wear a compression sleeve every day and do manual lymph drainage daily. sometimes it is a pain, but i am thankful i am alive so my lymphedema is nothing! my arm swells sometime but the sleeve contains it so it will not turn into elephantitus. I find it scary at times, worrying about the cancer coming back, but then i dismiss that negative thought... see it as a waste of energy. concentrate on living but that word cancer still haunts me. thank you for your post I want to be just like you and al the others on here that beat the odds. thanks!! Bonita

JillaryJill 12-07-2011 01:11 PM

Re: 5 year's out from stage 3 Her2 pos 35 pos nodes
 
First of all 35 nodes...wow...second of all, 5 years out...I love this post. Also Kudo's to Linda, with 12 positive nodes, just like me. You ladies give me hope!!!
Thank you for posting!


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