Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastases) - Page 4

StephN · 07-31-2012, 01:33 PM

RIDE 'EM cowboy Paul!!!

Let us know what we can do as a group.

NEDenise · 07-31-2012, 05:08 PM

Paul,
I'm with Steph and Eileen...THANK YOU for all you're doing! And please...if there's something we can do, as a group, or even as individuals...I know I'm on board, and I bet a lot of our friends here would be willing to help too.

Eileen,
Geisinger has a good rep. I know at least one of the docs who treated my mom, at Fox Chase, is there now. But sadly...it's not where the IT Herceptin trials are...so it sucks either way.

Happy Anniversary Mario and Carol! And many, many more!

Denise

Rolepaul · 07-31-2012, 06:28 PM

Eileen,
I am hearing that there might be some movement in that area. I just need to help push it just a little more. I think I need to get some info from MD Anderson to the doc.

I will do what I can for all out there. Still waiting to hear from a certain contact that took my email and said they will get back to me. I am going to see Nina tomorrow night. I will follow through on emails when I can.

marvass · 07-31-2012, 11:29 PM

Thank you all for the good wishes, we did enjoy a good anniversary, and we are confident that there are more and more to come.
Mario

marvass · 08-05-2012, 12:15 AM

I would like to clarify the title.
My wife had Leptomeningeal Metastases, that is, many mets on the lining of the brain, the meninges, together with one 2 cm met on this lining. This was begining of last year. However after treating with local radiation and stayed clear for about a year, this developed into many mets inside the brain tissue, 6 at least varying from 6mm to 3mm, and countless others that were just about beginning to be visible. So actually this was no longer Leptomeningeal Metastase but brain tumours. IT herceptin alone is good to treat this in Her2+ and till now (3 months from being diagnosed and started treatment with IT) we had good results. She did no more radiation and no chemo. I have read that some tried it even with triple negative and worked.
I just wish that we had done this at the beginning of the cancer, while taking adjuvent IV herceptin after the masectomy, I'm sure none of this would have happened 3 years later!! She was stage 3, so those of you being stage 3 take my advice, do some IT herceptin shots through lumbar, not just IV, if you can.
Mario

hutchibk · 08-05-2012, 10:04 AM

Apparently my post disappeared, but if I am not wrong (and often can be), IT is available anywhere that you have an Onc who does it and insurance covers it. You don't have to find a clinical trial. I have had one friend consider it locally, and one on the west coast who had it.

And, great advice about lumbar shots as opposed to IV, Mario.

marvass · 08-06-2012, 01:41 AM

Good luck Eileen, wish you get what you want.
Brenda, this is still not a standard procedure, so all this depends on your onc.
Mario

marvass · 08-30-2012, 11:59 PM

MRI of 2 weeks ago came out to be not as good as we expected. The 6 tumors that were present before stayed the same size, however there are some new small spots around the brain and so most probably this dosage of 100mg IT herceptin is not working to clear all. However doctors said that they are not certain that this means progression, it could be that this new spots are herceptin marks on the cells that were present. Now the dosage has been increased to 150mg IT herceptin together with 50mg steroid per week. My wife can tolerate this without any sde effects at all. Quality of life is still very good. We are also starting lapatinib as from next week, and then MRI is another 6 weeks or so, to check if the tumors start shrinking.

ehower · 09-01-2012, 07:15 AM

Hi, Mario, Thanks for the update. We're all thinking about you and your wife. The good news is that the larger tumors didn't grow. I hope the lapatinib goes well, too!! Eileen

hutchibk · 09-01-2012, 02:00 PM

Thanks Mario... as my quote said, "... it is available anywhere that you have an Onc who does it and insurance covers it." I think that is the same thing, no?

marvass · 09-19-2012, 10:42 PM

You are both welcome, over these couple of weeks, my wife is still stable with a very good quality of life. Hope the tykerb and herceptine are working, will scan in a month's time and update.

ehower · 09-20-2012, 05:21 AM

Glad things are going well. Looking forward to a positive next report!!!

Pray · 09-20-2012, 09:48 AM

I'm hoping and praying to hearing more postive reports! Gods blessings to you and your family!

evlin75 · 09-21-2012, 03:13 PM

IT herceptin is available in Orlando at the MD Anderson facility there, if anyone needing this lives in this area.

marvass · 09-23-2012, 05:26 AM

That is great news elvin!!

Thanks pray and ehower.

Will keep you updated.

Rolepaul · 10-01-2012, 08:58 AM

Nina is still doing great. The bump up in Herceptin IT dosage might have something to do with it. There are two small areas that need to be followed. One is in the L2-L3 spinal nerves, but it is really hard to see. The other is on the L5 top plate, but it appeared back in the spring after a really brutal Lumbar Puncture. In the mean time, Nina has been back home since Labor day weekend and then flew out to Houston for treatment, Denver to visit her mother, back to Houston for treatment and eval, then home this past Saturday. She is walking like crazy, driving, computering, yogaing, etc. We are not out of the danger zone, but things are in a comfortable spot. A person from the mid east started her treatment regimen two weeks ago with Nina's method. So there are a few already being helped. Time to see what I can do to get more treated and healthy. Still some reluctance on deep brain treatment, but working on having more women with that issue addressed in the next few months.

KDR · 10-01-2012, 09:03 AM

Yoga? Fantastic! Thank for the update on Nina and I look forward to more good news...
Karen

marvass · 10-14-2012, 12:10 PM

Wife is still doing well, MRI this week, will see how the combination of herceptin 150 mg IT every week and IV every 3 weeks together with 1250 mg tykerb worked. We are hoping for better news, fingers crossed.
Mario

evlin75 · 10-14-2012, 01:15 PM

Glad to hear the IT treatments seem to be working for others. My daughter was infected with staph - either when the ommaya port was installed or when herceptin was instilled. Had to remove it in an emergency procedure. Found an abscess behind the ommaya. I stayed with her for eight weeks instilling antibiotics IV to get it under control.
She has since transferred to MD Anderson in Orlando whee she is getting the IT by spinal puncture. 40 mg right now, but can be raised -unlike the clinical trial. The clinical trial dose would not change. The first MRI showed clearing of the cervical area and other areas with a bit less of the cancer. The second MRI looked mostly the same with not much change seen.
The fact that she was infected and could not receive chemo for the other areas of her body - bones etc - allowed her to qualify for the pertuzamab. She said maybe the infection was a blessing in disguise.
She has remained on the Tykerb and is now back on the Herceptin plus pertuzamab also.
I am keeping my fingers crossed that this will work for her and am wishing the best for all - no matter the diagnoses or treatments scheduled for them.

Pray · 10-14-2012, 01:28 PM

Mario and Evlin, I am always hoping and praying for good results , Gods blessings to both of your families.