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FilY · 08-08-2016, 10:56 AM

Hello,
I’m a HER2 patient originally diagnosed in 2013 at Stage 4. I’m also a 68 year old male. I’m posting here because I’m currently being treated by a neuro-oncologist (at a major cancer center) with what is essentially an experimental regimen - pulsed dosing of Tykerb - intended to prevent occurrence of brain mets in Her2 cancer that is otherwise being controlled by Herceptin.

The theory behind the treatment (and it’s not much more than a theory) is that Tykerb, unlike Herceptin, is a small enough molecule to get through the blood brain barrrier (BBB). However in normal doses (1000-1250mg/day) it doesn’t penetrate the BBB well enough to have a clinical effect. The hope/guess is that by pulsing a week’s dose over 2 days, the high concentration of lapatinib will overwhelm the BBB and act on any cancer in the central nervous system. I want to stress that, so far, there is NO solid evidence (e.g., a clinical trial) that this treatment is effective. There is some evidence (a Phase I trial) that the therapy is safe. There are significant side effects but the bottom line is if it prevents another brain met, it’s worth it.

In addition to providing information about this treatment to readers of this forum (I don’t see any other mention), I’d love to connect with any other patients on this regimen (there’s a lot of variability in how to do it) and/or get feedback from other Her2 patients who might talk to their oncologists about it.

Thanks in advance for any response and thanks to providers of this forum.
----------------------------------------------------------

1/2013: CT scan looking for source of distributed pain turns up Stage 4 adenocarcinoma of unknown primary metastasized to a wide range of sites in my bones, including sacrum, sternum, multiple ribs, iliac bones, thoracic spine. After significant searching, no primary tumor found then or since.
3/2013: Biopsy of inflamed lymph node provided a sample which was sent to Biotheranistics for Gene Expression Profiling and to Foundation Medicine for oncogene sequencing. These identified the following molecular characteristics of the cancer

Her2/neu positive
ER & PR negative
BRCA1 positive (both in my germline and the cancer)
Characteristics consistent with either breast or salivary gland cancer
Above led to treatment as breast cancer[/INDENT]

3/2013 - 10/2013: Eight courses of Carboplatin + Taxol. Well tolerated.
8/2013: Began Herceptin (transtuzumab) “maintenance” infusions every 3 weeks. Scans show stable disease; no progression.
1/2014: Began supplementing Herceptin with Tykerb (lapatinib) 1250mg (5 tablets) daily. Well tolerated. Scans continue stable; no progression.
9/2015: Scans show apparent brain met growing in my dura
11/2015: Successful craniotomy removes 2.5cm tumor with same molecular characteristics as cancer above. 3 courses of conventional radiotherapy to clean up margins.
2/2016: Resumed Herceptin after surgery. Add pulsed dosing of Tykerb as an experimental treatment intended to overwhelm blood-brain-barrier and thereby prevent another brain met. Pulsed dosing = approx. 4000mg Tykerb (16 tablets/day) for 2 days out of 7. Difficult side effects.
Present status: Stable whole body bone scans every 3 mos. MRI brain scans every 3 mos. - clean so far. Feel good.

08-08-2016, 10:56 AM	#59
FilY Member Join Date: Aug 2016 Posts: 5	Re: Compiling Data on HER2 Brain Mets Hello, I’m a HER2 patient originally diagnosed in 2013 at Stage 4. I’m also a 68 year old male. I’m posting here because I’m currently being treated by a neuro-oncologist (at a major cancer center) with what is essentially an experimental regimen - pulsed dosing of Tykerb - intended to prevent occurrence of brain mets in Her2 cancer that is otherwise being controlled by Herceptin. The theory behind the treatment (and it’s not much more than a theory) is that Tykerb, unlike Herceptin, is a small enough molecule to get through the blood brain barrrier (BBB). However in normal doses (1000-1250mg/day) it doesn’t penetrate the BBB well enough to have a clinical effect. The hope/guess is that by pulsing a week’s dose over 2 days, the high concentration of lapatinib will overwhelm the BBB and act on any cancer in the central nervous system. I want to stress that, so far, there is NO solid evidence (e.g., a clinical trial) that this treatment is effective. There is some evidence (a Phase I trial) that the therapy is safe. There are significant side effects but the bottom line is if it prevents another brain met, it’s worth it. In addition to providing information about this treatment to readers of this forum (I don’t see any other mention), I’d love to connect with any other patients on this regimen (there’s a lot of variability in how to do it) and/or get feedback from other Her2 patients who might talk to their oncologists about it. Thanks in advance for any response and thanks to providers of this forum. ---------------------------------------------------------- 1/2013: CT scan looking for source of distributed pain turns up Stage 4 adenocarcinoma of unknown primary metastasized to a wide range of sites in my bones, including sacrum, sternum, multiple ribs, iliac bones, thoracic spine. After significant searching, no primary tumor found then or since. 3/2013: Biopsy of inflamed lymph node provided a sample which was sent to Biotheranistics for Gene Expression Profiling and to Foundation Medicine for oncogene sequencing. These identified the following molecular characteristics of the cancer Her2/neu positive ER & PR negative BRCA1 positive (both in my germline and the cancer) Characteristics consistent with either breast or salivary gland cancer Above led to treatment as breast cancer[/INDENT] 3/2013 - 10/2013: Eight courses of Carboplatin + Taxol. Well tolerated. 8/2013: Began Herceptin (transtuzumab) “maintenance” infusions every 3 weeks. Scans show stable disease; no progression. 1/2014: Began supplementing Herceptin with Tykerb (lapatinib) 1250mg (5 tablets) daily. Well tolerated. Scans continue stable; no progression. 9/2015: Scans show apparent brain met growing in my dura 11/2015: Successful craniotomy removes 2.5cm tumor with same molecular characteristics as cancer above. 3 courses of conventional radiotherapy to clean up margins. 2/2016: Resumed Herceptin after surgery. Add pulsed dosing of Tykerb as an experimental treatment intended to overwhelm blood-brain-barrier and thereby prevent another brain met. Pulsed dosing = approx. 4000mg Tykerb (16 tablets/day) for 2 days out of 7. Difficult side effects. Present status: Stable whole body bone scans every 3 mos. MRI brain scans every 3 mos. - clean so far. Feel good.