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Search took 0.07 seconds; generated 90 minute(s) ago. Search: Posts Made By: Rolepaul
Forum: her2group 02-13-2015, 04:39 PM
Replies: 21
Views: 9,635
Posted By Rolepaul
Re: TDM1 for HER2+ brain mets reocurrence?

Same device. The drug will make it to the tumor areas. IT is just convincing doctors to try. Steroids are very important as the Herceptin activates the white blood cells to go after the cancer...
Forum: her2group 02-13-2015, 04:26 PM
Replies: 235
Views: 296,703
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Feb 12 results as good as October and December. That means at least four months (and probably longer) with no brain or systemic disease seen. Almost ready for the happy dance, but Nina is pretty...
Forum: her2group 01-27-2015, 05:25 PM
Replies: 27
Views: 8,073
Posted By Rolepaul
Re: My daughter, Susan.

Ev,
I am glad Susan had the extra time, but sorry it was not time where she was in better health. I agree that finding the disease earlier would have been better, but I am not sure if they would...
Forum: her2group 01-27-2015, 05:19 PM
Replies: 16
Views: 6,976
Posted By Rolepaul
Re: Question on brain mets

Typically it is not good news with a quick call. Glad yours was great. It is not good to get brain mets, but it is best to find them as soon as possible.
Forum: her2group 01-09-2015, 12:32 PM
Replies: 32
Views: 9,418
Posted By Rolepaul
Re: 10 years - one decade - since brain mets diagnosis

Keep on keeping on! Glad things worked on the Gamma knife. It has a really good rate of success, but that did not happen for Nina. May you continue to serve as the beacon of what should happen for...
Forum: her2group 01-06-2015, 02:42 PM
Replies: 21
Views: 7,228
Posted By Rolepaul
Re: ER-/PR- HER2+ Recurrence Period

Detection may occur at any time, but detection just means that is when it WAS found, not when it could have been detected. Nina had a 6 cm brain lesion that was found two or three years after...
Forum: her2group 01-06-2015, 02:27 PM
Replies: 49
Views: 31,477
Posted By Rolepaul
Re: Ugh Brain Mets!

Wife has been there, done that three times. Gamma Knife commonly will make you nauseous, and the steroids help. It will potentially cause minor hair loss, but it should not be significant. Brain...
Forum: Herceptin / Tykerb 12-22-2014, 01:39 PM
Replies: 689
Views: 483,567
Posted By Rolepaul
Re: Please post your two cents on Herceptin "side effects" real or perceived!

What is GP2 and who is the company that is making the material? I do not know what I can do, but it cannot hurt to let me try.
Forum: her2group 12-22-2014, 09:58 AM
Replies: 44
Views: 13,164
Posted By Rolepaul
Re: early Christmas present--10 yr overall & bc specific survival results just publis

Maybe Herceptin is like a seatbelt in a car: You never know if it benefited a particular case, and it will not save everyone. It is clear that those populations that are not able to get Herceptin,...
Forum: her2group 12-19-2014, 04:15 PM
Replies: 6
Views: 2,982
Posted By Rolepaul
Re: THIS MAY BE BIG: new monoclonalantibody-peptide conjugate crosses blood-brainbar

Funny. I saw this and saw the results on the MRI scans with Nina's brain lesions. Are the researcher's missing something with conjugated antibodies and water/lipid solubility thinking. If the MAb...
Forum: her2group 12-19-2014, 04:04 PM
Replies: 12
Views: 4,805
Posted By Rolepaul
Re: Is THIS the reason adding herceptin to chemo only improves OS by 40%?

Lani,
Bispecific MABs with anti-hyraluonic acid on the leg opposite the HER+ leg might work. I know they are doing this for T-Cell attractants to make the MAbs easier to pick up for recirculating...
Forum: her2group 12-17-2014, 03:20 PM
Replies: 21
Views: 9,635
Posted By Rolepaul
Re: TDM1 for HER2+ brain mets reocurrence?

Univ of Southern California might have IT Perjeta available soon. Word is IT Herceptin is also going to get deep brain lesion approval soon. I will try to see who to contact for these and get back...
Forum: her2group 12-17-2014, 01:47 PM
Replies: 44
Views: 13,164
Posted By Rolepaul
Re: early Christmas present--10 yr overall & bc specific survival results just publis

In 2005, I knew of Slamon, but the team at Genentech working on this are past co-workers in some cases. I knew about Herceptin in 1992 (prior to most others) and worked on a diagnostic in 1985...
Forum: her2group 12-17-2014, 11:30 AM
Replies: 1
Views: 2,278
Posted By Rolepaul
Re: Hypothermia treatment with Re-radiation, anyone?

Where is the disease? I have heard good results with this in lower abdomen.
Forum: her2group 12-17-2014, 10:38 AM
Replies: 44
Views: 13,164
Posted By Rolepaul
Re: early Christmas present--10 yr overall & bc specific survival results just publis

We are celebrating Christmas 2014 after being told that Nina had 3 to 6 months to live at Christmas 2011. She had Intrathecal Herceptin starting January 2012, with IV Herceptin in February 2012. We...
Forum: her2group 12-17-2014, 10:28 AM
Replies: 11
Views: 3,259
Posted By Rolepaul
Re: MET devastation & desperate for advice

Been there. Done that. Look at Intrathecal Herceptin at MD Anderson. Nina was treated with 40 mg weekly with 0.4 gm topotecan twice weekly for four weeks, then 80 mgs per week IT Herceptin/0.4 gm...
Forum: her2group 12-17-2014, 09:39 AM
Replies: 235
Views: 296,703
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Repeat MRI scans show that full remission has occurred. Two residual spots are Gamma knife scarring from December 2009 to a high degree of confidence. Nina is walking five miles per day, is doing...
Forum: her2group 12-02-2014, 08:43 PM
Replies: 8
Views: 7,395
Posted By Rolepaul
Re: new bc vaccine from Washington Univ (not UNIV OF WASHINGTON) PROMISING

It will be interesting to see how the next phase of the study works out. I am working on getting more info and will post what is not proprietary.
Forum: her2group 12-02-2014, 08:40 PM
Replies: 235
Views: 296,703
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

I think the IT Herceptin needs to be at least 1. mg per kg to work. Nina's was piggybacked with Topotecan, which may be important (but probably is not). Try Sloan Kettering in New York or ask at MD...
Forum: Herceptin / Tykerb 12-02-2014, 08:36 PM
Replies: 6
Views: 13,681
Posted By Rolepaul
Re: Any info about Tykerb + Capecitibine (Zeloda)???

Xeloda will give you a hand and foot rash like you would never believe. Udder cream and bag balm for the hands, with cloth gloves at night. Henna with lemon juice into a water paste for the feet. ...
Forum: her2group 11-13-2014, 09:21 AM
Replies: 18
Views: 5,172
Posted By Rolepaul
Re: NEDenise Family Update

Frustrating that I could not help more. IT herceptin at high dose is helping a few, but it is hard to get traction still. My thoughts are with Denise and I know her legacy will be one of good deeds.
Forum: her2group 11-13-2014, 08:59 AM
Replies: 4
Views: 4,086
Posted By Rolepaul
Re: Tykerb + Xeloda success stories

Some great results with Intrathecal Herceptin and systemic TDM-1 with Nina. With your additional mets, I would do systemic TDM-1, Perjeta, and Taxane. The three drug regimen is tough on side...
Forum: her2group 10-22-2014, 03:31 PM
Replies: 235
Views: 296,703
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

We are back and happy. Nina had a subcarinal lymph node that had doubled in size by August. The brain lesion was slowly increasing in size for five years. In August we switched to systemic TDM-1...
Forum: her2group 10-22-2014, 03:25 PM
Replies: 7
Views: 3,043
Posted By Rolepaul
Re: rolepaul I know this is not for the here and now

Hold on to your hat. Nina's subcarinal lymph node was at 1.8 by 1.4 cm on August 1 and it is now back to normal. The brain lesion that was a possible source of concern is now about 25% of its...
Forum: her2group 10-02-2014, 06:04 PM
Replies: 7
Views: 3,043
Posted By Rolepaul
Re: rolepaul I know this is not for the here and now

We shall see what happens. Right now, they think the brain spots are radiation still killing HER+ cells. I think it is the pertuzumab working. Still no proof it is recurrence. Working on the...
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