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Search: Posts Made By: Mtngrl
Forum: her2group 10-30-2017, 11:41 AM
Replies: 13
Views: 1,226
Posted By Mtngrl
Re: Any good chemos I could try?

The new drug is "ZW25." the trial is just opening at UC Health in Aurora (just east of Denver.)

My onc looked in to other HER2 drugs in development. None are doing compassionate use.

Amy
Forum: Herceptin / Tykerb 10-30-2017, 11:31 AM
Replies: 686
Views: 171,550
Posted By Mtngrl
Re: Please post your two cents on Herceptin "side effects" real or perceived!

I had foot cramps, runny nose, nose bleeds. No weight gain. I'm about to go back on just H&P, since chemo seems to do more harm than good.
Forum: her2group 10-29-2017, 04:46 PM
Replies: 13
Views: 1,226
Posted By Mtngrl
Re: Any good chemos I could try?

Pam--I hope it goes well. I always thought I'd have more time.

The investigational drug is Z125, by a company called Zymeworks.
Forum: her2group 10-29-2017, 12:28 PM
Replies: 13
Views: 1,226
Posted By Mtngrl
Re: Any good chemos I could try?

Thank you all. I'm going to do Hercepti and Perjeta, and enroll in a trial of a new HER2 drug. A friend of mine is doing well in a Kadcyla+ Keytruda trial. She was Stage 3 at diagnosis last year, but...
Forum: her2group 10-28-2017, 03:37 PM
Replies: 7
Views: 1,722
Posted By Mtngrl
Re: Amy? (Mtngrl)

Thank you, Traci and Juls. And sorry I've been away.

The brain tumors and/or radiation, plus numb fingers, make it hard for me to see and type. I can read now, though!

I'm not getting very good...
Forum: her2group 10-28-2017, 01:59 PM
Replies: 27
Views: 4,329
Posted By Mtngrl
Re: Our Waterdreamer is Gone

Oh, so sad. I loved her beautiful spirit.
Forum: her2group 10-28-2017, 01:49 PM
Replies: 13
Views: 1,226
Posted By Mtngrl
Any good chemos I could try?

I've been in treatment since May, 2011. The last combo--Herceptin and Cisplatin, did not suppress the cancer, just my blood counts. I had progression in my lungs and chest.

I thought I'd move on...
Forum: her2group 10-05-2017, 04:16 PM
Replies: 42
Views: 7,634
Posted By Mtngrl
Re: Phooey--Brain Mets

Oh, sorry! I've been meaning to check in.

I'm still recovering from the brain mets and/or radiation. Quite impaired physically. Slowly getting stronger. Still here!
Forum: Herceptin / Tykerb 08-09-2017, 04:58 PM
Replies: 18
Views: 2,019
Posted By Mtngrl
Re: Back on Tykerb--Still Rough

I had a good scan! lungs. liver and bone met are stable or healing. brain being radated Done, I hope. Onward.
Forum: her2group 08-02-2017, 05:04 AM
Replies: 42
Views: 7,634
Posted By Mtngrl
Re: Phooey--Brain Mets

IT can turn on a dime! I just need to rest and wait
Forum: her2group 07-22-2017, 11:15 AM
Replies: 42
Views: 7,634
Posted By Mtngrl
Re: Phooey--Brain Mets

Thanks everybody!

I will start targeted radiation treatment next Friday. Just 5 sessions. If all goes well I'll be back to normal in a few weeks.

I will get a leave of abscence from my PhD...
Forum: her2group 07-16-2017, 10:26 AM
Replies: 42
Views: 7,634
Posted By Mtngrl
Re: Phooey--Brain Mets

Luck is such an important, but random, factor, isn't it?

I'll keep you posted.
Forum: her2group 07-15-2017, 06:11 PM
Replies: 42
Views: 7,634
Posted By Mtngrl
Re: Phooey--Brain Mets

Thank you, Friends.

I have confidence in my cancer center and my oncologist. I am hoping for the best.

Decadron makes me "wired" and causes unpleasant personality changes, but I understand the...
Forum: her2group 07-15-2017, 11:13 AM
Replies: 42
Views: 7,634
Posted By Mtngrl
Phooey--Brain Mets

I am having double vision, and I'm also having trouble with balance. I haven't fallen but I'm quite wobbly.

I had a brain MRI Thursday and learned yesterday that I have three brain tumors and some...
Forum: Herceptin / Tykerb 07-15-2017, 10:30 AM
Replies: 18
Views: 2,019
Posted By Mtngrl
Re: Back on Tykerb--Still Rough

Well, I gave up on Tykerb. My body just can't hack it. Hopefully I'll be around for one of the new tki's, and it won't be as bad for me.

Amy
Forum: her2group 07-04-2017, 04:00 PM
Replies: 7
Views: 3,817
Posted By Mtngrl
Re: High dose Vitamin C

Ask what the mechanism for killing cancer is. If you ask your oncologist that question about chemo or a HER2 drug he/she can give a one or two sentence explanation. Your naturopath should be able to...
Forum: her2group 06-29-2017, 07:15 PM
Replies: 35
Views: 9,167
Posted By Mtngrl
Re: Good and Bad News

Prayers and warm wishes for our dear friend Michka.

Amy
Forum: her2group 06-27-2017, 11:50 AM
Replies: 35
Views: 9,167
Posted By Mtngrl
Re: Good and Bad News

Steph--

Thank you for being so gracious about me bandying your name about without really knowing what I was talking about. You're a class act. And you're a wonderful support group member.

Love,...
Forum: Herceptin / Tykerb 06-21-2017, 07:31 PM
Replies: 18
Views: 2,019
Posted By Mtngrl
Re: Back on Tykerb--Still Rough

Hello to the world's best support group! I love you all.

I'm getting by. You can take Tykerb an hour before or an hour after eating. I've decided it's better if I take it after. I'm also sticking...
Forum: her2group 06-18-2017, 07:33 PM
Replies: 28
Views: 7,335
Posted By Mtngrl
Re: Brief Update

Oh, Tiffany, I'm so sorry you've had such a rough time! Sending love and light.

Amy
Forum: Herceptin / Tykerb 06-15-2017, 04:08 PM
Replies: 18
Views: 2,019
Posted By Mtngrl
Re: Back on Tykerb--Still Rough

Thanks, Carol Ann! It's good to get encouragement.

Hope all is well with you.

Amy
Forum: Herceptin / Tykerb 06-15-2017, 02:05 PM
Replies: 18
Views: 2,019
Posted By Mtngrl
Back on Tykerb--Still Rough

I was on Tykerb and Herceptin in 2012. I remember having diarrhea, but I also remember it being manageable with Imodium, and I think I eventually got used to it.

About a year ago I was on Kadcyla...
Forum: her2group 06-09-2017, 03:54 PM
Replies: 35
Views: 9,167
Posted By Mtngrl
Re: Good and Bad News

Dear Michka,

I don't have any advice either, but I'm glad you posted and I hope you get the right treatment, and soon. We're so lucky we have Lani and others doing such great advance work for us....
Forum: her2group 06-04-2017, 10:55 AM
Replies: 45
Views: 13,267
Posted By Mtngrl
Re: Port or No Port?

Hi everybody! The port placement went well. It's sore, of course, but it seems to be healing well. I had my first dose of Navelbine. It's going to take awhile to get used to the Tykerb. Lots of tummy...
Forum: her2group 05-30-2017, 07:23 PM
Replies: 45
Views: 22,077
Posted By Mtngrl
Re: Looking for hope

Yay! So happy to hear this. Hugs to you and your wife.

Amy
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