Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases) - Page 7

marvass · 02-15-2013, 10:21 AM

Just checked the threads, Carol went to 90mg in 6 weeks, then 100mg for another 8 weeks, on the 14th week MRI showed some new spots, then escalated to 150mg, then results started to show, with 3rd MRI 22 weeks after starting. So that is long!! Be patient Evlin, it is going to work.
Mario

evlin75 · 02-15-2013, 02:35 PM

Mario, Could I ask where Carol recived her IT treatments?

marvass · 02-16-2013, 03:30 AM

We are in Europe not US.

marvass · 02-24-2013, 05:09 AM

MRI and CT scan this Tuesday, fingers crossed. Will post results as soon as I can.
Mario

marvass · 02-27-2013, 06:03 AM

MRI and CT scan of yesterday:

Edema is stable just like it was two month ago.
All tumors gone except for 1 small one now measuring around 3 to 4mm diameter. There were 3 deep brain ones left 2 months ago.
All the tumors that were gone in the MRI of two months ago did not show up again in this new MRI.
Looks like we are getting closer and closer to clear all the brain from this metastatic cancer.
CT Scan came out good, there are no tumors or activity all around the whole body except for this last tiny deep brain tumor.
Thank God!

Mario

NEDenise · 02-27-2013, 08:42 AM

Mario!
Thank God indeed!
I couldn't be happier for you, or your beautiful Carol!

Please give her all my best wishes!
Denise

Rolepaul · 03-04-2013, 09:23 AM

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 same condition and getting roadblocked bad.

Wee know that Carol will show the same positive results Nina did. We have faith in the IT Herceptin and in both of you. Nina is issue free since October 2012, and really for the past 11 months. We hope all enjoy the benefits that the treatment can provide and look forward to hearing of better acceptance within the medical community.

Paul

evlin75 · 03-04-2013, 01:23 PM

Depocyt is what my daughter is receiving IT and it cannot be mixed with Herceptin. Dr wanted to take her off Herceptin, but I feel it still can work now since the ommaya is in place. Maybe the LP did not give good perfusion. The Depocyt can b given every two weeks and then even farther apart later. The reason we had to go to it, is there was much progression and we needed to have some immediate relief. No obstrutions yet and that is good. So she is getting the Herceptin on alternate weeks.
The Depocyt is caustic and tends to inflame the tissues so steroids are also used. My daughter did have quite a reaction with the first treatment and was hospitalized to get it under control. The doctor then ordered more coverage of the steroids.
A VERY difficult nd trecherous path but we still have hope of knocking this down.

Rolepaul · 03-04-2013, 01:42 PM

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 with Nina until there was 10 doses at 80 mg for 62 kg Nina. We actually saw additional improvement at 100 mg for 65 kg. This 1.5 mg/kg dosing was also important for Carol, Mario's wife. It does not occur in 2 weeks, but in 10-16 weeks. It should however, stop progression of the disease immediately. Any edema is probably due to the cancer cells dying. Do not give up. Depocyte is really hard on the brain. I am in the business of making these drugs, you want to use a monoclonal Antibody if at all possible.
Superior Paul

evlin75 · 03-04-2013, 02:02 PM

Hi Paul,
We sure did not want to go to this, but the doctor said it had increased along the spine all the way plus extra growths in the lumbar, thorax and several in the cerebellum. He said he was afraid it was going fast enough that it might get past his ability to handle it.
Hopefully we can keep adding the Herceptin and increase the herceptin as the doses of depocyt get further apart.
He said the herceptin with the topotecan was not working.
Thanks for the input.
Ev

Rolepaul · 03-04-2013, 02:11 PM

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.

marvass · 03-05-2013, 01:21 AM

Wish you luck Ev and Sue, thank Paul, I know you were so busy lately.
Mario

marvass · 03-24-2013, 06:07 AM

Last Thursday my wife had a seizure which was not strong, but could not go away. Had to take her to emergency and even with 20mg valium could not stop, well it took over 4 hours to control, but still she is having twitches in her hand, continuously. Looks like she has some damage now. A scan done yesterday resulted in that there are no brain hemorrhage and that no more tumors are visible except for the edema that she had. She is on 6mg steroids (dexametasone) and muscle relaxants (ativan and rivotril), plus 3000mg keppra and 300mg epanutin daily but still with these continuous twitches. Don't know what to do. Anyone has an idea?

dchips1 · 03-24-2013, 07:19 AM

i had stroke type symptons in 2010 that said was steroid related. prayers for continue healin Darita

NEDenise · 03-24-2013, 02:47 PM

Mario,
Sending prayers too...hang in there.
Denise

Rolepaul · 03-24-2013, 04:14 PM

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 short setback.
Paul

marvass · 03-31-2013, 02:07 PM

Thanks all of you for the good wishes.
Fits nearly gone now, only slight ones once or twice a day, lasting less than a minute.
She is now on Keppra 2500mg daily, Epilim Chrono 800mg daily, Phenytoin 300mg (which should be reduced this week) and 9mg dexametasone.
Mario

marvass · 04-07-2013, 02:30 PM

Fits still on!!

Don't know what's wrong! neither do the docs!!

She is on 2000mg keppra, Epilum Chrono 2000mg, Phenytoin 300mg and still having slight fits 3 to 4 times a day, lasting a minute or less. Every time she moves slightly without cooling her head. But how come when the cancer is gone! Maybe scars from the past.
Strange and the brain cannot be explained.
Treatment of IT herceptin and IT hydrocotisone and Tykerb has been stopped for 4 weeks now.
Hope nothing goes bad.

Mario

dchips1 · 04-07-2013, 07:36 PM

has she been evaluated by the neurology department? changes in MRI? What does Her EEG show?

Prayers for peace and healing

darita

NEDenise · 04-08-2013, 04:21 AM

Mario,
Praying for you both daily. Is Carol able to be at home, or is she better monitored in hospital? How is she 'feeling' otherwise?

I imagine this is harder on you, than it is on her. My heart goes out to you.
Sending love and positive thoughts to you both across the many miles.
Denise