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Search: Posts Made By: Rolepaul
Forum: her2group 12-13-2017, 09:21 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Marvin,
I can't imagine how you feel. Nina has done quite well. We are approaching the sixth year of her being on IT Herceptin and Topotecan. November 2 was the 8th anniversary of the discovery...
Forum: her2group 05-08-2017, 12:18 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
I am very sorry to hear this. Carol was an inspiration to everyone that had CNS involvement. My thoughts are with you in this difficult time.
Paul
Forum: her2group 10-01-2015, 08:56 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Good questions, here are some answers:

Has anyone who has had IT Herceptin
treatment ever stopped it due to presumed disease eradication?
Not sure on this point. Nina was told they would not...
Forum: her2group 04-20-2015, 10:06 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Lani,
Actually, at the doses that were used with Nina and Carol, three of the deep brain patients had good results. It just means that steroids are needed to keep the swelling from causing...
Forum: her2group 04-20-2015, 09:27 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
That is great news. Send my wishes to Carol.
We are still trying to get to Malta on a trip. I am halfway through working in Omaha during the week and driving home to Denver on the...
Forum: her2group 02-27-2015, 07:45 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Ask him to think about toptotecan as well. He can ask Dr. Loghin at MD Anderson Brain and Spine in Houston Texas.
Forum: her2group 02-27-2015, 07:36 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

No, but I know what the protocol will be. That is part of something not public. It goes along with the Herceptin not tried at the higher doses prior to January 2012 for people like Carol and Nina. ...
Forum: her2group 02-26-2015, 10:25 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Marvin, I would have them start the Pertuzumab at 40 mg for a few weeks and then go to the same level as you were having done with the IT Herceptin. Also, I wonder if you go back on the IT...
Forum: her2group 02-26-2015, 10:07 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Ask to have 0.4 mg of topotecan in 5 mls of sterile water added to the treatment. Do not use TDM-1 as the non-Herceptin part is too damaging. University of Southern California in Los Angeles is...
Forum: her2group 02-13-2015, 04:26 PM
Replies: 235
Views: 209,071
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 12-17-2014, 09:39 AM
Replies: 235
Views: 209,071
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, 08:40 PM
Replies: 235
Views: 209,071
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: her2group 10-22-2014, 03:31 PM
Replies: 235
Views: 209,071
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 08-29-2014, 10:18 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

So the good news is that Nina's brain lesion is now called stable. They see incredibly small changes in the MRI scans of her one brain lesion. The docs do not know what it means. The thought is...
Forum: her2group 07-02-2014, 08:25 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

After 30 months, there is some signs of one very small spot on the brain slightly increasing in size when compared versus one year ago. Looking at Perjeta via Intrathecal to address the spot after...
Forum: her2group 05-15-2014, 01:37 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Pretty interesting as TDM-1 has a molecule that might allow blood brain barrier penetration. It is not good for direct input into the cavity (though an Ommaya reservoir or lumbar puncture) but IV...
Forum: her2group 05-15-2014, 11:38 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

IT Perjeta is still not in clinical trials. Nina is doing well, but has a spot near where they did the excision and Gamma knife in November 2009. In March 2014, it was a dire issue. In April it...
Forum: her2group 01-23-2014, 10:13 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
Good to hear Carol is doing well. Nina is afraid to stop the IT or IV Herceptin. She is at IV Herceptin every three weeks and IT Herceptin every four weeks. The IV is administered locally...
Forum: her2group 11-13-2013, 04:23 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Nina is doing great. We went to once per two weeks for six months and are now at once per four weeks for the past year. She also does IV Herceptin once every three weeks.
NED in MRI scans, PET...
Forum: her2group 11-13-2013, 08:47 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

kaiulanis,
This is a tough situation to be in. As Mario indicated, I think zapping the tumors locally and then introducing the Intrathecal Herceptin is probably the best method to do things. The...
Forum: her2group 08-23-2013, 07:50 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario and Carol,
Our thoughts are with you and we are glad that progress is finally occuring at a faster rate. I am sorry that the IT Herceptin was not as as effective as it was with Nina. ...
Forum: her2group 03-24-2013, 04:14 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario,
Not sure what to say about this. Our thoughts are with you and Carol. I wonder about the steroids issue as well. I think you are on the right track for treatment. I hope this is just a...
Forum: her2group 03-04-2013, 02:11 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

My thoughts are with you and Susan. I think the dose was not strong enough for the Herceptin plus Topotecan, but the doctor is there and it is his job to be right.
Forum: her2group 03-04-2013, 01:42 PM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

The ability to decide on what path to take for treatment is difficult. I do not think that there has been a suitable dose to allow successful treatment at the 80 mg dosing. We did not see progress...
Forum: her2group 03-04-2013, 09:23 AM
Replies: 235
Views: 209,071
Posted By Rolepaul
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Mario and Carol,
We have not abandoned you, just incredibly busy. Carol's progress is truly amazing and inspirational. I do not know what to say. I am trying to get doctors in the US to treat the...
Showing results 1 to 25 of 45

 
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