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Old 03-09-2013, 10:37 AM   #58
evlin75
Senior Member
 
Join Date: Sep 2007
Posts: 118
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 slow release depocyt gives the most side effects on the third/fourth day.

When those kick in she has a very bad day or two. At first, even with steroid prep she was endlessly vomitng and she seemed to have the brain inflamation reaction. Had to be hospitalized. Now the doctor has ordered the steroids to be continued past the old schedule to 4mg once a day continually. However this time two days after treatment she had trouble with walking and fell. Also sleeping continually.

Dr. Monica Loghin MD did consent to talk with me about her case. She thought the local neuro-oncologist was doing all that could be done and going to Houston would not help. She is still getting the 80mg of Herceptin IT on oposite weeks from the depocyt. They cannot be mixed.

The Houston doctor said it was not a good sign that the leptomeningeal areas progressed while on Herceptin 60 mg as Herceptin usually keeps it stable even on lower doses.

She had talked with the Orlando Dr and seemed to think Susan's condition and areas were much more advanced that some others that have had success. For that I can try to blame her old oncologist for not picking up on the disease sooner. Susan had to ask for the MRI.

Dr. Loghin continued to say that Herceptin IT research is in such an early stage. She indicated some have success with only 20 mg and some with 40 mg. Susan did not have success with 4 of the 60 mg doses and one 80 mg dose. It could not even keep her stable. I believe, from her statements, Dr. seemed to think that the disease had overridden the herceptin and the topotecan.

So far she is still getting the IV perjeta and Herceptin through her port to help control any total body problems.

Hopefully the depocyt wil get the rapidly spreading cells in the spine under control, as the other treatment set up had stopped working.

Ev
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