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

[micheleu]

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]

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

[Midwest Alice]

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

[Laurel]

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]

Thank you for sharing and congratulations!!!!!

[Shobha]

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]

Michele,

Thank you for posting. This gives me HOPE.

Amelia

[caya]

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]

Blessings to you. Thanks for sharing your good news.

[Leslie304]

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]

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]

Rose,

Thanks for sharing your encouraging information.

Amelia

[Sandra in GA]

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]

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]

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.]

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]

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]

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]

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]

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]

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]

Congratulations Renee! Five years and many, many more! I hope to post the same report ..... in four more years :)

[vlcarr]

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]

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]

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]

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]

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]

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]

Couldn't figure out (find) the Tony Jeffs that Rich had mentioned in Facebook. So I tought I'd bump up this thread...

[micheleu]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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!

[evergreen]

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]

Bumpt this one up...

[Sandra in GA]

Not five years yet. Did just make the four year mark!

[evergreen]

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]

http://clinicaltrials.gov/ct2/show/NCT00524277?intr=%22AE37+peptide%2FGM-CSF+vaccine%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]

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]

Yesterday was 5 years since my diagnosis from stage III. I thank God every day for this blessing. Blessings to you all.

[evergreen]

Congratulations to you, ljbm! I am sure all of us share in your joy!

[prolifejoan]

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 (http://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]

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 (rpetro%40wfubmc.edu?subject=NCT00524277,%20CDR000 0562261,%20Vaccine%20Therapy%20in%20Treating%20Pat ients%20With%20Breast%20Cancer) 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]

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]

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]

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]

Dear "lizabeth,

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

[NanaJoni]

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]

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]

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]

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 (http://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]

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]

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!

[JennyB]

Congratulations Ursula long may it continue, I do so love this thread x

[Sandra in GA]

Congratulations, Ursula, may you continue! I hope to join you this summer at the five year marker!
Sandra