HER2 Positive-anyone 10 years out?

AlaskaAngel

In this morning's news:

http://www.npr.org/blogs/health/2013/02/18/172099043/cancer-rehab-begins-to-bridge-a-gap-to-reach-patients 

LindaKR

Awesome article - this is what I'm looking for!!! There is one in Boise, ID and by Los Angeles, CA - 600 or 900 miles from me

OK, I'm better now - ok, not really!

Graceembraced

Hi, glad I found this board.

After a left mastecomy, four rounds of AC, 12 week of Taxol, 33 days of radiation, I am now working through the Herceptin every three weeks until July.



I'm still regaining my energy, but have trouble sleeping and daily nose bleeds. Is this common for Herceptin?



My oncologist have me a 50/50 chance of recurrence and said if cancer returned it would not be curable only treatable.



Praying I make the ten year mark in 2022!

lago

Graceemebraced the nose bleeds are quite common when doing Herceptin. My onc said they don't know why. I did find that my nose bleeds stopped once I was off chemo and the dry winter weather was over. My last chemo was Jan 18th (2011). So seems we were on a similar time of year time frame.

BTW it's 50% chance you will remain NED. ♥

LindaKR

Grace....  I had nosebleeds frequently during herceptin.  I actually still get them more than I used to, but not like during treatment.  Gotta love those optimistic oncs.  My MO doesn't like to give statistics, and always puts a positive, though realistic, spin on my chance of recurrence!!!  And lago is so right - cup half full is so much better!!!

Soccermom4force

8 years ,2 months from DX. Stage 2B multifocal, 1+ node (4mm met)..Like AA I have SE's that are troublesome. Glad to be here but I want to "keep it real" and "honest".

Jennt28

What sort of SEs did you get left with Soccermom4force?



I'm still struggling with a few but it's early days for me yet...



Jenn

KristyAnn

I am approching my 5 year mark in March and trying to decide what kind of celebration I want to have.... I definitely want to do something even if simple like dinner out. I used to think about cancer all the time, every day and now-- even with a mastectomy, chemo, radiation,neratinib clinical trail and a hysterectomy--- so I have visible scars---- I DONT think about it all the time, even when I see those scars! Im going to France this summer with a girlfriend and my daughter- we are staying a week and then dropping the dd off for her French immersion school for 7 weeks.........................all this to say, hang in there, it gets better and life and even LOVING life will continue!

BonoboGirrl

@KristyAnn: Love your attitude! And I agree: "hang in there, it gets better and life and even LOVING life will continue!"

Graceembraced

Thanks ladies

Good to know its the Herceptin and not something else for the nose bleds.

I like my surgeons prognosis...there's no more cancer, we got it all, clear margins for the breast and lymph nodes...and I'm keeping it away!

sherry67

Graceembraced,

Herceptin can cause nose bleeds I had a few when I was in treatment..

Soccermom4force

Jennt,

Since treatment my bones and joints have aged rapidly. Apparently any area that was going to become arthritic did so rapidly. In my case my feet and spine cause significant pain daily.Cognitive functions also affected.

If I had to guess I'd say the culprit (s) are AC/Taxol dose dense and 5 yrs Tamoxifen and or Arimidex.

That said I'd do it all again if needed. Being alive trumps pain!



Warmly,

Marcia

LindaKR

soccermom - I soooooo agree with your statement - "being alive trumps pain", though some days I have a few doubts!

Jennt28

Soccermom4force - I have those arthritic changes too! Came out of nowhere... Dr has put me on an NSAID (Mobic, once every 2nd day, 2 weeks on, 2 weeks off) and the pain is gone :-)



Jenn

LindaKR

None of the NSAIDs have helped me, so glad it's working for you Jenn.  My thumb joints have both disintegrated since starting AI's, I had a steroid injection in one, that helped for a little over a year, but it's back to a lot of pain again now.

PinkEst

Hi,

I am 8 years since Dx. Did not do Tamoxifen for more than a month, if that long. Herceptin for one year and monthly Lupron shots, still. Many aches and pains here and there, but glad to be where I am at the moment, NED.

Keep going, you'll be this far, and beyond, in no time.

LeeA

Congratulations, PinkEst!  

PinkEst

Thank you! I always leave this site feeling inspired by all the warriors that share their courage, compassion, fears, victories, challenges, honesty and hope.

LeeA

I just now saved your post.  I have a folder of feel good posts that I often look to for inspiration.  Thank you for sharing your story!   

lago

PinkEst That's awesome! Keep it going girl

sherry67

Pinkest,

So nice to here ...Big congrats to you

PinkEst

Thank you lovely ladies! All of you inspire me to keep going for the gold ( I guess the gold would be a life of no recurrences or new Dx in my / our case?)



Sending each one of you a warm hug and wishes for a long and healthy life!

Gabriella5

N.E.D. for more than 7 years...!!

Diagnosis 2005, Her2+ ER/PR-, Stage 3

LeeA

CONGRATULATIONS, Gabriella5!!

lago

Gabriella5 not that I'm religious or anything but:

"7-Seven is one of the greatest power numbers in Judaism, representing Creation, good fortune, and blessing. A Hebrew word for luck, gad, equals seven in gematria. Another Hebrew word for luck, mazal, equals seventy-seven." read more…

congratulations!

Denise-G

Gabriella, congratulations and thanks for the HOPE!

septembersong

Gabriella, what great news. Thanks for sharing it. Seven years!

cvmarilyn

It is so wonderful to read of your successes Pinkest and Gabriella.  I hope and pray that that is all of us at one point and here for those that come after. Thank God for the researchers!  Hugs to all!

Marilyn

ahdjdbcjdjdbkf

Thanks for posting Laurieish! We have a similar diagnosis - except mine was one node, rather than 2. My tumor was also 4.5 cm. Your 5 years of NED gives me great hope that I truly need right now.

lkc

just posted this on the Stage III boards (her2 board wasn't up way back in 05 when  I was dxed!)....anyway:       

lkc wrote:

Hi Ladies.

It's eight years for me!!! I can't express how grateful I am to the ladies on these  boards. Coming on here was so comforting in the early days when I had to move away from home and DH for my surgeries and  treatment.

I didn't have a clue of  how to make it through those  8 months.

I found a sisterhood here who soothed my fears and comforted me always even when I went to the " dark side"

Thank you, I love you all!

For my precious oldsters, my heart is filled with joy when I read your posts and are doing so well.  I have learned that although we are a tough bunch we have moved on to a wondrous place of laughs, loves and specatacular gratitudes.

For the newbies. I wish I could wipe the fears and anxieties away you have now.  It is truly a journey that no one wants to go on, but take heart you will get through this time and you  will too join us as an  " Oldster".

Be Gentler with yourselves, time will pass and things will get better.

I have been transformed by BC and feel  honored and blessed to be here today LIVING LARGE EVERDAY.

Linda