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Forum: her2group 03-10-2013, 04:57 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I have been traveling and doing appointments and home for a short time. Meanwhile other family members have been busy researching for answers.
It seems that methotrexate given parenterally through...
Forum: her2group 03-09-2013, 11:48 AM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Hard to know. We were wondering about using perjeta IT. It was very difficult to find a doctor willing to do the higher dose Herceptin.
Your suggestion of TDM1 -or even pergeta - IT, might be...
Forum: her2group 03-09-2013, 10:37 AM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Update on Susan.

She is receiving the depocyt every two weeks IT now x five doses. and then will go to once a month. So three more of the every two week before the once a month. It seems the...
Forum: her2group 02-25-2013, 03:54 AM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Guess I should change title or start a new thread, but this is all very connected. The new medicine replacing the topotecan -lysomal tykarabine- was put through the ommaya last Wed. She was prepped...
Forum: her2group 02-21-2013, 10:58 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I certainly wish much success to all who are doing the IT treatment for spine mets, but my daughter is having a very rough time right now.
She finally got up to 80 mg the last treatment before the...
Forum: her2group 02-15-2013, 03:04 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

To Rolepaul:
What is the highest herceptin mg IT being given at the Houston MD Anderson? If our physician does not feel comfortable about going higher we would like another avenue if Susan needs...
Forum: her2group 02-13-2013, 02:36 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

The Ommaya was replaced today using the opposite side this time. The procedure went very well according to the neurosurgeon. She was admitted for observation for two days - I guess the standard...
Forum: her2group 02-08-2013, 09:53 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Another uplifting interesting case with a positive outcome.
Ev
http://www.oncologypractice.com//fileadmin/content_pdf/co/6_CO_july_232_Brandt_Case.pdf
Forum: her2group 02-06-2013, 12:58 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Susan had a few uncomfortable days after her last treatments - some vomiting.

She had the IV treatment of herceptin and perjeta and then the next day the intrathecal treatment of herceptin and...
Forum: her2group 01-30-2013, 11:19 AM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Update:
Susan did not receive 80 mg today but remains on 60 mg. The doctor said he did not want to change the dose prior to the surgery. This was the fourth dose on 60. The spinal fluid tested...
Forum: her2group 01-28-2013, 08:48 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

thanks Monica,
Susan has a cardiologist so will have him review everything carefully to be on the safe side. I have not seen the EkG so have no idea what type of abnormality they are talking about. ...
Forum: her2group 01-28-2013, 01:15 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Well a hitch in the procedings and the ommaya surgery canceled for now. Her EKG showed some T wave abnormality. She has to make an appointment with her cardiologist and get cleared for surgery...
Forum: her2group 01-25-2013, 09:23 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Monica, I sent you a private message. I think compassionate coverage will become more available soon.
More physicians will be more comfortable about doing the Herceptin IT therapy.
Some day it...
Forum: her2group 01-24-2013, 07:13 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

an extra note here- this physician may not take other patients. he is doing this cautiously in consult with other MD Anderson physicians.
Forum: her2group 01-23-2013, 03:17 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Thanks, Paul,

You have been a great help to many others - my daughter and myself- during this troubling time. 80 mg will be getting very close to the 1.5 mg per kg for my daugher, Susan, as she...
Forum: her2group 01-23-2013, 01:28 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Finally very good news! Daughter was feeling better after two injections of the higher dose 60 mg, and had a couple really good days last week. Now we have found out the cytology results from last...
Forum: her2group 08-03-2012, 02:01 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

My daughter is receiving 10 mg two times a week for the first month in the Chicago trial. She is getting herceptin only IT- no other additive. She also gets Herceptin IV - along with Tykerb that she...
Forum: her2group 08-02-2012, 05:56 PM
Replies: 67
Views: 29,866
Posted By evlin75
Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

My daughter is in the Chicago trial. Just had her first treatment. How long does it take to know if the medicine is working?
Thanks for any info.
Ev
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