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Search: Posts Made By: phil
Forum: her2group 09-06-2017, 04:10 PM
Replies: 27
Views: 8,990
Posted By phil
Re: Our Waterdreamer is Gone

She was very near death back in December , talking with hospice . Then neratinib came along . Puma gave her compassionate use , and she rebounded miraculously . I know she was grateful that Puma , a...
Forum: her2group 08-31-2017, 03:24 PM
Replies: 27
Views: 8,990
Posted By phil
Our Waterdreamer is Gone

Fern Gerard , " Waterdreamer " passed away about 2 weeks ago. She was a fierce fighter and an activist for Stage IV rights. But most of all she was a Loving Mother , Wife and Family member . She...
Forum: her2group 06-14-2017, 05:41 PM
Replies: 5
Views: 4,713
Posted By phil
Re: Today in scotland - Perjeta

Picketing and Petitioning over here seems to have helped soften up our FDA . Personal meetings by we Stage IV survivors with our political reps. They are getting more flexible . Pick a public...
Forum: her2group 06-14-2017, 05:28 PM
Replies: 37
Views: 20,966
Posted By phil
Re: Good and Bad News

SOOOOOO Good to hear from you - lots of good advice here . Fern's drug co. Puma , is giving more compassionate use than most ( all ? ) small co.'s for neratinib , and deserves our Stage IV...
Forum: her2group 04-05-2017, 04:16 PM
Replies: 17
Views: 5,133
Posted By phil
Re: How long for T-Dm1 induced neuropathy to go away ...

Lorraine's foot neuropathy got worse on t dm-1. her onc says it's permanent . she had it before t dm-1 from many chemos - taxanes, xeloda. cramping and a " weird " feeling in the ball of her feet. ...
Forum: her2group 02-15-2017, 05:23 PM
Replies: 12
Views: 4,605
Posted By phil
Re: Sophia

supportwife , I too am sorry you got the xeloda arm . my wife tried xeloda and tykerb twice . tough s/e.'s xeloda caused skin issues on feet and hands . she could only stay on about 2 months each...
Forum: her2group 02-09-2017, 01:51 PM
Replies: 12
Views: 4,605
Posted By phil
Re: Sophia

so , what do we stage iv folks think about a blinded trial where you have progressed on the best her2 tx. - t dm-1, perjeta ? that means the alternate arm is with inferior , older drugs like...
Forum: her2group 01-24-2017, 07:31 AM
Replies: 13
Views: 7,613
Posted By phil
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

FISH is a measure of how strongly the cancer cells overexpress the her2 gene. you would have had this or some other test for her2 strength at initial diagnosis. ask your doc how strong you her2...
Forum: her2group 01-23-2017, 05:43 PM
Replies: 13
Views: 7,613
Posted By phil
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

my guess is the 30 % are straight her2, strongly overexpressing her2 . like lorraine - a 6 on FISH scale. i think the 30 % could be improved by adding perjeta. and tucatinib , margetuximab...
Forum: her2group 01-10-2017, 08:05 AM
Replies: 36
Views: 15,889
Posted By phil
Re: Add me to the 10 Years Out Club!

Congratulations to you all. My wife Lorraine made 10 yrs as of sept. 2016. and she was stage iv , a met to the liver from the start . very aggressive her2 only, a 6 on the FISH scale. progressed...
Forum: her2group 11-04-2016, 12:33 PM
Replies: 36
Views: 15,889
Posted By phil
Re: Add me to the 10 Years Out Club!

Congratulations ! My Lorraine passed the 10 year Stage IV milestone in Sept. Dx. in 2006 with a met to liver . Progressed on many chemo combos until Kadcyla wiped it out in 2011 . So 5 yrs NED...
Forum: her2group 11-01-2016, 01:02 PM
Replies: 13
Views: 7,613
Posted By phil
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

what are these other agents besides t dm-1 ? " anti cd347 " , etc. in laymans' terms . immuno therapies ?
the paper keps talking about diferneces in effectiveness between her and t dm-1 . t...
Forum: her2group 10-24-2016, 02:59 PM
Replies: 13
Views: 7,613
Posted By phil
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

I hope they follow the trial results comparing t dm-1 / pert. vs. pert with herc / taxanes further out to track longer term survival outcomes for stage ivs. my sense is that tdm-1 , with it's...
Forum: her2group 10-24-2016, 02:53 PM
Replies: 13
Views: 7,613
Posted By phil
Re: important new report: benefit of TDM1 after herceptin + perjeta raises?

I am already a big fan of t dm-1 ( kadcyla) as it was the drug that finally worked for my wife , after many chemo / herceptin combos (7 or 8 ? ) that did not. after 4 yrs of steady progression on...
Forum: her2group 10-03-2016, 04:42 AM
Replies: 45
Views: 20,822
Posted By phil
Re: In Praise of Perjeta

so glad it is working for you. i caution all stage iv her2 's who have progressed on previous tx. , get scanned , markers regularly. including pet ct or boone scan annually . perjeta and herceptin...
Forum: her2group 09-06-2016, 05:23 PM
Replies: 4
Views: 4,987
Posted By phil
Re: Has anyone had lapatinib and capecitabine with Herceptin and PErjeta

lapatinib is one. there is a promising her2 tx. for brain mets in phase II trials. ont380, a small molecule drug like lap. in trial it's added to kadcyla. i heard it got fast track approval from...
Forum: her2group 03-07-2016, 05:25 PM
Replies: 36
Views: 8,584
Posted By phil
Re: SoCalGal feeling So-so

I too put a plug in for kad./t dm-1 . to prevent more reocc., keep an eye on the ont380 and kad trial . moving on to phase ii after very strong results on her2 brain mets. enrolling 180 pts this...
Forum: her2group 03-03-2016, 06:11 PM
Replies: 9
Views: 5,147
Posted By phil
Re: Right to Try Laws

So Sen . Hill, one of the very few lucky enough to get into the tiny old fashioned trials , decides he knows what's best for the un - lucky who have to beg for a few compassionate use slots. I...
Forum: her2group 12-30-2015, 06:42 PM
Replies: 42
Views: 21,463
Posted By phil
Re: Karen has moved on

Karen and I connected here soon after I joined . She thought like we did, fought like we did. She had a good but too brief run with t dm-1 right after Lorraine got it . Her triple pos. cancer...
Forum: her2group 11-26-2015, 06:01 AM
Replies: 43
Views: 12,563
Posted By phil
Re: Karen

Yes - hearing from Karen ,another thing to be thankful for today . Always Lifting You Up in Prayer
Forum: her2group 11-24-2015, 06:46 PM
Replies: 44
Views: 81,647
Posted By phil
Re: Kadcyla Side Effects

lorraines s/e got better after 3 cycles or so . I know u know this , but u need nourishment to help keep bone marrow strong, blood counts up - juicing etc. to keep kadcyla going . keep anti...
Forum: her2group 10-14-2015, 04:21 PM
Replies: 3
Views: 2,843
Posted By phil
Re: MET UP " Die In " this Tuesday , Oct 13 , Wash. DC

It was great - I'm still on a high from so many cancer activists in one place 250 or more ! go to metup.org and see the pics . what these 3 women have done in 5 months is amazing. they are younger...
Forum: her2group 10-11-2015, 06:46 AM
Replies: 3
Views: 2,843
Posted By phil
MET UP " Die In " this Tuesday , Oct 13 , Wash. DC

Lorraine and I are going . So glad some Stage IV Survivors decided to take Activism to the next level . many thanks to Beth , Jennie , Susanne et al . Tellling Congress, Big Pharma and the FDA : We...
Forum: her2group 06-10-2015, 10:52 AM
Replies: 235
Views: 166,563
Posted By phil
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

ASCO last week talked about a promising new tx for her2 , w/ brain mets. a genetic drug - ON380 ( sp. ? ) added to kadcyla. phase I had good results in 8 out of 8 pts who got this combo.
Forum: her2group 05-27-2015, 05:56 PM
Replies: 44
Views: 81,647
Posted By phil
Re: Kadcyla Side Effects

Lorraine did not have dizziness , but nose bleed could be low platelets. Lorraine had to reduce dose to 3.0 after 7 cycles to keep plats above 50,000. has neuropathy , mostly from xeloda but t...
Showing results 1 to 25 of 393

 
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