Calling all stage iv sisters

[linn65]

I am soooo glad to be Done with herceptin.!!!! My feet ankles hurt so much, I had it on August 20th and they just aches! Any idea on things to try.

[Andrea Barnett Budin]

CONGRATULATIONS!

Works for me, and many -- Co Enzyme Q10 -- 150 mg
AM + PM w/food
Alpha Lipoic Acid -- 300 mg
AM + PM w/food
L- Carnitine -- 500 -- 500 mg
AM + PM on empty stomach

Let me know if this combo works for you, please!

With love,
ANDI

[ricky]

Andrea,
My wive, Marsha, diagnosed 7 + years ago with stage 4, multiple liver mets, has been NED 6 years. She has beeen off Herceptin since March 2011. All her PET scans since 2006 have shown her to be NED.
I'm so happy for you. It's good to know that you can beat HER2.
Rick

[Saygoon]

So very glad to read these posts. I am Stage IV with bone Mets - 17months sometimes I get a little scared and these posts renew my hope! Thanks Ladies

[Saygoon]

Please add me!!!! March 2012 and in love with life!

[KristinSchwick]

Stage IV with bone mets since 2011. Now on Perjeta, Herceptin and Taxotere, tumor markers dropped almost 150 pts with this combo- and I started jogging again. Ya Me!
Kristin

[janice]

Introducing myself.
Single mom of two, ages 14 and 10.
Dx de novo stage 4 12/2010. Er+/Pr+/Her2+. Responded well to tx for 2.5 yrs.
Aug PET showed NED (yay!) but... something "suspicious" on brain. MRI showed 8 enhancing lesions, 2 large (apparently, 40% ish of Her2+ get brain mets! Herceptin doesn't penetrate BBB.) My brain mets were asymptomatic, which considering the volume, I think is unusual.
Now getting Whole Brain Radiation. If mets shrink enuf, will get Stereotactic Radiosurgery to what remains.
Will start Kadcyla on Fri. I am trying to get Perjeta, too.
Want desperately to live a long time for my kids, who really need me.
Was glad to see on here that there are some who live a while after brain mets, as the stats are so terrible. Want to hear encouragement!
-Janice

[Andrea Barnett Budin]

It's my belief that reading statistics is detrimental to your health. People who take those stats and process it, end up becoming one of those awful statistics.

There is at least one person who has survived what you have. If they can do it, so can you.

My prognosis was grim, invasive lobular 4th stage bc and then 3 yrs later, as Herceptin was fast-tracked by the FDA -- clinical trials are such a long and tortured process, abandoning people who could benefit to hold on if they can -- I found that I was 80% HER2+. That's how they categorized such people in '98. When the bc spread throughout my liver, my stats fell even lower. I might live out the yr.

I determined to be among the tiny group that survived. Please read my threads, especially the latest A SIMPLE FORMULA FOR CHANGING THE FUTURE.

You want encouragement, Janice? I am here for that very reason! Any time...

With love,

Andi

[janice]

No replies? No encouragement?

I am so encouraged to see that there are a few sisters alive some years after brain mets. Any with multiple lesions?

I see some are alive due to husbands/ partners aggressive work getting them the best tx. I am single. Any advice on getting advocacy for me as a single mom, for not standard tx, but the best tx?

Thx
Janice

[Andrea Barnett Budin]

PM NEDenise.

So Cal Girl

Steph

Read their posts.

Search on this site for brain mets.

Lots of info here.

Ferret it out.

Sorry my post wasn't helpful to you.

ANDI

[janice]

Oh, Andi, thanks! No, when I posted my 2nd post, yours hadn't come thru yet, so I hadn't seen any reply to my post yet (I wasn't saying your reply was unhelpful.. it hadn't shown up on my computer yet, so I thought no one replied at all). Thanks so much for your reply! Your story is great! I sure hope I will have similar luck!! Stories like yours give hope!

-Janice, now getting WBR for 8 brain lesions, 2 large.
Triple positive since 12/2010, mets to bone til now, which are now not lighting up, so NED below brain.

[Andrea Barnett Budin]

Understood, Janice. I am wishing you good luck with your WBR. Has to be scary. But, be brave anyway. That's what courage is all about (you still feel fear, but you do what you must anyway). Learned that over the years.

8 lesions -- so what chemo are you/were you on?? I know Herceptin doesn't cross the BB barrier.

Those I 've mentioned above in previous post have gone your route and are still all here I am elated to say. Cause I happen to love each and every one of them!

Sending you a virtual big hug, Janice! We all need a hug, ya know. It just helps I find...

[Andrea Barnett Budin]

Was searching for you and BB barrier and found this thread... 'lizbeth always is savvy in general and has much to offer re this particular topic I see. Sharing...


The Blood-Brain Barrier and Neuroinflammation - Dr. Datis Kharrazian - HER2 Support Group Forums


Knowledge is power!

[janice]

Thanks Andi, I'll look at that thread now.
Dx at Stage 4. Started with Herceptin and Xgeva. I was on paclitaxel for year (began with Taxol, switched to Abraxane, those are 2 different forms of the same chemo, which is paclitaxel). Good response. Then switched from paclitaxel (for a break, getting neuropathy) to Faslodex (1st hormonal tx), continuing all along with the Herceptin for Her2 and Xgeva for the bone mets. Mets improved, but primary was growing, tested pos for BRCA2, convinced them to let me have a bilateral mx June. NED from neck down... but brain mets! Now 10 days of WBR. Tomorrow I'm supposed to start Kadcyla. Nervous... i've been lucky so far to tolerate txs well.... will this one make me sick?

-janice

[alicem]

Hi Janice,

I also suggest that you start a new "thread" and ask your questions there. I think your post has gotten buried in this one, it has been around for awhile.

My cancer has not recurred, so I'm not a stage IV'er, and I can't help with anything you might be going through. I can tell you that there are many women here who can. Additionally, those like me will also be there on the sidelines to act as your cheerleaders and support in whatever comes your way.

You are welcome here, although I think you'll understand that we all wish you didn't have to be here.

All my best,

Alice

[Jackie07]

Saw this encouraging story by Luchy 4x in the 'Herceptin side effects - real or perceived' thread. Need to add her to the list - for fear I'd forget:

Hi there!
I haven't been here in so long, but I thought I should post this as I am a Herceptin Life-timer. I have been on Herceptin since Sept, 2005. Every 3 weeks, via Port, without fail. I have Syma (Canada) or Mugga scans every 3 months and see my onc. every 3 months. I am lucky that the mets to both lungs that were discovered in 2005 are completely gone and I have had complete response to Herceptin. Side-effects? Nothing I would ever complain about but since you asked... my nails are crap, therefore I get bio-gels once a month (but its $$!) and sinus probs with sores in nose but like I said nothing to complain about. My heart is fine, I dragon-boat race on weekends and practice 3x a week with a whole boat (22 women) of breast cancer survivors. I am lucky to be able to have herceptin as I am a 4 time survivor, since 2000. When I asked for Herceptin in 2002, I was not able to have it- I didn't have mets. Boy am I glad that rule has changed and now it is given as part of a regiment for Her2pos patients. Memory loss- not from Herceptin- but def. from chemo. Always happy to speak to anyone about my story, about Herceptin especially since it worked so well for me. By the way, I was given the choice to go off it .... I said "NO WAY! It's the only thing keeping me alive"!

[4angel]

Thank you for the up date, glad you mentioned the nails, because mine are a mess and they kept telling me it was from the taxol, The worst are the two big toe nails, they are almost back to normal but after 15 months post taxol I had hoped to see more improvement. But if the Herceptin is also hurting them, it makes more sense. Do you have any Nueropothy? For me that is the worst side effect...Glad to hear your heart is doing well too...Almost two years of treatment and I do worry about the long term effects. I'm on both Herceptin & Perjeta...

[laura4252]

I like that.....You can beat Her2---We need to hear more stories about this.
2005 I was diagnosed Stage 0, Her2+++, PR & ER-. Lumpectomy, radiation to right breast.
2009 March Metastisized, small pea size lump. "poorly differentiated invasive ductal carcinoma" Recommended mastectomy, Herceptin one year, 4 months chemo. Oct.- Feb 2010 I decide Herceptin only (allergic to Taxotere).No mastectomy
2010 Feb-Oct off Herceptin Metastisized to left lung Oct-March 2011 back on Herceptin
2011 Herceptin "not cutting it" Lung lesions persist so tried several targeted chemos: Tykerb(Lapatinib) 6 weeks, tummy upset so stopped.
2012 Moderate propgression lungs/chest wall January-April Xeloda (foot blisters)April: Navelbine May: Port installed right boob bright red. Sept decide to consider mastectomy Start Gemzar to reduce tumors in right breast. Scheduled surgery for Dec. TDM1 approved so decided to try that.
2013 TDM1- Excellent response till June, then breaking through TDM1. PET/CT show mixed response
2014 Tried Seattle trial- did not qualify. Last TDM1 Feb. No treatment Feb to now. PET/CT June shows breast clear, right lung clear, left lung lesions persist. Deciding whether to try Abraxzane- Have not wanted to lose my hair or remove my breast since 2005-right breast, original site, has no detectable cancer. What to do, what to do???? There are no easy answers, so we all just feel our way through this journey called "LIFE." That's my story- I still hope for NED, and I really like hearing that YOU CAN BEAT HER2!!"

[Gift]

Please count me in. Recurrence as stage IV in January 2014.

[annettchen]

Add me on as well! Diagnosis in February 2014, with bone mets off the bat. Currently on Herceptin and Perjeta, plus Xgeva, and stable. Hoping to go where Andrea Barnett Budin, StephN and some others have paved a path...