HER2 positive and 10 years out? - Page 3

vlcarr · 09-20-2009, 07:59 PM

Thanks so much for the information. Yes, I have a port because I've been on a clinical trial for 3 months getting weekly herceptin and taking 1000 mg of Tykerb daily to try and shrink my 8cm tumor. I finished the trial last week so that is why my surgery was pushed back--you have to do the trial drugs first. However, they worked well for me. The tumor doesn't show up on ultrasound and the doctor can't feel it.

My concern is that 3 weeks after having a right mastectomy and all lymph nodes removed I start chemo. Guess I'm afraid that will make it harder. I had neck surgery in April of this year and 3 weeks out from that I still didn't feel too great.

I will be relieved in a way when they do the surgery because they just don't know whats really in there yet. I had 2 tumors, one 2.5 and the other 1 cm. However, since they tested exactly the same the drs think everything in between the 2 tumors is also cancer so that is how they came up with 8cm.

Did you have an appetite or just mainly wanted fluids?

I guess I just need to slow down and get through my surgery on Thursday and then worry about the chemo but I was so excited when I saw that you had exactly the combo I will be getting.

Thank you so much for replying and the helpful information!

vlcarr · 09-20-2009, 08:02 PM

Oh, meant to tell you my name is Vicky.

DanaRT · 09-21-2009, 05:49 AM

Vickie,

I understand your fear of not feeling well enough after your surgery to begin chemo in 3 weeks. Your oncologist will surely access how well the surgery site is healing and your overall health before beginning. It probably hurt to wait one more week if your Dr. thinks you should.

I am so pleased to read that the trial went well and that tumors are not even noticable!

I lost 13 pounds in the course of 4 months. I did have an appetite but it was diminished somewhat. Ate a few beautiful prime rib dinners when my counts were a little low. My goal was to remain healthy enough to continue treatment and not get off of schedule. I ate healthy food but at times craved spicey foods so that I could actually taste it--wings and Taco Bell, not a good diet. I drank absolutely no alcohol during those four months. We are social drinkers and like to sit at our bar area with friends. I drank a lot of different wonderful teas during these times.

It is clear in my mind that my treatments didn't not keep getting worse as time went on. The worst I felt was after TCH treatment number 4. For some reason I didn't snap back as fast but the winter blues didn't help.

I was told to keep a little Imodium on hand. I never used it but there were times I thought about it! I experienced both constipation and diarrhea. It became a cycle that I could depend on through the first week but it wasn't awful just inconvient.

I washed my hands a lot. I was mindful to not touch my mouth or nose in an effort to not become ill. I wiped off grocery cart handles with the wipes the stores offer and many times kept my leather gloves on while shopping.

I bought larger silver hooped earrings and wore them a lot with my bald head and ball cap that matched the clothes I was wearing. The earrrings made me feel better.

Please report on how you're doing.

Take care,
Dana

lizm100 · 09-21-2009, 09:52 AM

I have met someone who was diagnosed around the age of 40 (between years 2000-2002) she was an advanced stage, several nodes involved, her2+++ BC and joined a trial at the time and has been NED for close to 10 years. Being of an advanced stage, her doctors continue to monitor her through scans (I think annual) and she is healthy and doing great.

DanaRT · 09-21-2009, 12:51 PM

Liz, A great inspiration. I love hearing about the long term survivors.

Julieta, I am glad you found us too. Though I don't visit as regularly as I used to I have found so much wisdom here.

Jacqueline, Your advice has motivated me to continue to get even more healthy. I do have a few pounds to lose again....

Linda, I agree...I want 20+++ more years!

DianneS., Thanks for starting this thread. I have probably used more space than I should be allowed in talking to Vickie but I hope it helps others too. Lucky you~ the sea in your backyard, how soothing and beautiful.

Best Health wishes to all of you,
Dana

julieta · 09-24-2009, 07:15 PM

Hello !!!
Anyone knows if are there a natural inhibitor for her2+ ?

p.s. Sorry, my english is very poor.

lizm100 · 09-24-2009, 07:46 PM

Julieta-

I am not a doctor but I know that supplements such as Indole 3 Carbinol and Iodine are supposed to help if you are ER+. I know there have been some studies with Evening Primrose & Her+++ breast cancers. I believe Evening Primrose was used with either Herceptin or chemo. You may want to google this... Wishing you the very best.

micheleu · 09-24-2009, 08:29 PM

Dianne,
I'm 6 years out from stage 3 with 34 postive nodes. I had A/C then Taxol then 1 year of Herceptin in trial. I never thought I would get this far out with no recurrence...It happens...

DianneS · 09-25-2009, 05:54 PM

Dana and Micheleu,

I love hearing about all of you survivors! What inspiring stories. Thank you so much for sharing, and I hope more stories keep pouring in.

Micheleu, I see you did an her2 vaccine. Can you talk more about that? When did you do it? Any side effects? Can your blood be tested to see how many her2's are floating about, if any? I guess what I'm asking is - how do they know this vaccine works? I haven't read much about it. I'm so glad you're doing so well!

DianneS · 09-25-2009, 05:59 PM

Liz,

Is evening primose oil safe for weakly ER positive women? I thought it mimicked estrogen? But I don't know for sure.

Dianne

DianneS · 09-25-2009, 06:27 PM

Hi Jacqueline (Lien)

And thank you for your post. It really helped me. Ever thought about being a bc counselor?

You have a great way with words.

I completely agree about exercise. I tried to walk, even if only a few minutes, during chemo and have been walking almost daily. Plus my hubby and I are going to Qigong classes (similar to T'ai Chi) once a week for an hour. I have learned to pace myself otherwise I will try to hike AND kayak all in the same day & be very sorry afterwards. Herceptin makes me tired a lot and I will be glad when it's done. One more Oct. 8.

Relationships...being in chemo for months is hard on relationships...the energy to do things just isn't there. So, you lose some friends along the way. I was warned about that on many bc sites. Some people just can't handle a friend having this disease. Plus I have had (as you read) some medical issues since 2004 and I guess people are tired of it. Not 1/2 as tired of it as me!

Can I ask why you didn't do Herceptin? Or would you prefer to PM me about that? I have re-thought my decision to have chemo/Herceptin many times and sometimes wish I had gone another route. I wasn't given much time to consider all of the options. I am not strongly ER or PR positive as you are, so maybe for me it was a good choice.

I would love to attach an avatar of me in my kayak but I don't know how to do avatars. We have sit-on-top kayaks, abs plastic, not fiberglas. But they are easy to get in & out of as no skirts are needed around the seats. It is also self bailing. We bought them in 1999 and this summer was the first summer they didn't go out much. About your arm/shoulder - I broke my shoulder and upper arm in 2003 in Feb. and was back kayaking in May. My orthopedic said 'no way'. Ha. It was the best thing I could have done to exercise and stretch it and I don't have any range of motion issues at all.

You live on the sea as well....can you rent kayaks there? I have never been in a canoe, but that sounds like fun too! There are 2 person kayaks - could always let someone else do the paddling while you relax?

A reunion in Tampa! Sounds like a nice bunch of women.
I would love to go to Florida again - I have family there in Ocala. Just not sure I can afford it right now. It's on the other side of the coast of Canada from where I am. I'll check into the website you sent though. If there's a way to get there I will try!

How should I send you some photos?

Dianne

Joan S. · 09-26-2009, 03:16 AM

Dear jessica,
I saw your Emory U. video. It was very inspiring. Thank you! I noticed that you say you take chemo but it looked like they were pills. Would you mind telling me what it is. I just want to keep abreast of what's out there just "in case". Thanks.
Joan

lizm100 · 09-29-2009, 07:49 PM

Diane-

not sure about the ER+ since I'm Er-. If you google evening primrose and her2, you will get hits about various studies. I don't recall if they were specific about hormone status but they were specific on her2 status with good results.

DianneS · 09-29-2009, 09:14 PM

I'm kinda upset that my oncs never told me about this! I could have taken evening primrose oil during my chemo & herceptin. Now I'm done with herceptin so if I take the stuff now there's no synergy.

I am weakly er+. Is it safe for me to take evening primrose do you think, or is it mainly for strongly ER+ women?

Thanks for providing the article Liz.

Dianne

09-30-2009, 10:39 PM

These are some amazing stories.
I was Stage II diagnosed 3 years ago yesterday.

NED as far as I know.

Jackie07 · 10-28-2009, 07:15 PM

Below is the treatment information of Adriana Mangus. She's more than 15 years out. Also check the postings of Andrea Barnett Boudin who is also more than 10 years out. And I think Christine, the founder of this board, has just had a clean check-up after she had been first diagnosed more than 10 years ago.

1994 - right breast, lumpectomy, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
All nodes -28, negative
Er,Pr, Positive HER2 status unknown at this time.
2003- Recurrence to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 until August 2004--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 February-April Xeloda added to Herceptin
Xeloda- did not work
2007-May - Back on Navelbine+Herceptin
2008-Feb-March -15 Sessions Radiation to Rt. Lung
Continue on Herceptin.
2008- October 17 Added Tykerb to Herceptin
2009- June-- Discontinue Tykerb
2009 July 7--Currently on Taxol + Herceptin

BRCA1,2 NEGATIVE.

StephN · 10-28-2009, 08:04 PM

Hi -

The original question was about HER2 positive and NO recurrance after 10 years.

Several of us here (like Andi and Christine) are stage IV and without further tumors for 10 years, other than brain successfully treated.

I am just now 9 years from surgery and diagnosis, WITH recurrance, but NED for over 7 years now after mets treatment.

So, even if mets do show up they can be treated successfully, and we live on with frequent surveillance.

I'll make that 10 years, hands down!