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agness · 02-12-2016, 11:54 AM

--- part 15 ---

My first brain scan after starting IT Herceptin was a month later. While my symptoms of facial nerve pain resolved within a week of starting treatment the scan showed disease "pooling" in pockets around the cerebellum, predominantly on the right side.

My neuro-onc said "it doesn't look like anything is getting in there", there meaning the posterior fossa, the lower chamber of the brain where the brain stem and cerebellum reside under the tentorium, a rigid membrane separating it from the cerebral cortex. "Nothing?" I said. "We are doing IV Kadcyla, IT Herceptin and I switched to a ketogenic diet and nothing is influencing anything?" I was in disbelief to be honest.

MRIs cannot see less than 109 cells, so there has to be disease massing for it to be seen but my disease progression was dismissed for months even as it was evidently growing as a film on my brain. I learned after neoadjuvant TCHP that MRI also can't tell the difference between tumor and active scar tissue formation -- the lymph node that lit up after 6 rounds of treatment -- it was just scar tissue at surgery.

I kept asking for more details, how could they know there was no scar tissue if it looks the same, scar tissue is also larger mass-wise than tumor based on my presentation, couldn't they do a metabolic scan (PET-MRI) of the brain to see if there was any effect of treatment? I was told no, that whole brain radiation was my only option.

So now I'm going from months of being told "we don't want to hurt you" and watchful waiting to "your only option is to nuke your head". Yes, sometimes whole brain radiation is the only option but recent studies show that as patient live longer that they are experiencing the serious cognitive side effects of whole brain radiation.

I had heard that rarely, but it had been done before, that they could just irradiate the cerebellum. My oncology team wouldn't budge though. My partner was like if whole brain is the only option then we are going to talk to more people. And so we did.

I was told that without treatment that I had about 4-5 months before a steep decline, and that was after I tracked down a new radiosurgeon who was willing to think outside of the box. She is unusual in that she is very familiar with radiation technologies as she had been involved with LINAC, gamma knife, cyberknife, tomotherapy, and even proton therapy in her professional life. She felt that for my case either tomo or proton was the best option both now and going forward should I need re-treatment.

Since I didn't have time to wait to see if the 100 mg dosage of IT Herceptin was going to penetrate deep into the pooled disease we opted to go for partial brain radiation. I had four weeks of daily rads to the back of my head, plus the edge of my occipital lobe and my brain stem to C2. A very uncomfortable 2-hour spinal MRI ruled out disease spread there -- plus I have 4 spinal fluid tests that show no evidence of disease spread.

What happened to me is rare but not unheard of and it could have been anticipated. The fact that I was even discussing leptomeningeal disease didn't influence the conversation at all from the beginning --though it wasn't like I was saying what if I have an aneurysm or something. I think they just don't know and so they are blind to the evidence in front of them.

The really sad part is that when I look back at standards for screening for brain mets in HER2 gals that by the time I started to have symptoms last spring that I was always going to need a craniotomy and that very likely I was also always going to need to have my cerebellum irradiated -- we just moved out the treatment of those conditions by a few months.

Throughout my recently brain rads and going forward I am now undergoing weekly craniosacral massage to keep tissues open and flowing (the posterior fossa is a confined space, they worry about pressure), also weekly vitamin C plus mineral infusions (at an outside facility), continued weekly acupuncture, and nutritional supplements under guidance of my naturopathic oncolgist. I resume IT Herceptin today.

My next brain scan is in a few weeks and I will report back on what the findings are. It will still be early but hopefully the keto diet, 18/6 fasting and every other damn thing I threw at it made the rads as effective as it could be -- plus my September LINAC seems like it worked locally where the tumor bed was, so there's a bit of evidence that my cancer mutation is susceptible to rads.

02-12-2016, 11:54 AM	#27
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: My leptomeningeal journey --- part 15 --- My first brain scan after starting IT Herceptin was a month later. While my symptoms of facial nerve pain resolved within a week of starting treatment the scan showed disease "pooling" in pockets around the cerebellum, predominantly on the right side. My neuro-onc said "it doesn't look like anything is getting in there", there meaning the posterior fossa, the lower chamber of the brain where the brain stem and cerebellum reside under the tentorium, a rigid membrane separating it from the cerebral cortex. "Nothing?" I said. "We are doing IV Kadcyla, IT Herceptin and I switched to a ketogenic diet and nothing is influencing anything?" I was in disbelief to be honest. MRIs cannot see less than 109 cells, so there has to be disease massing for it to be seen but my disease progression was dismissed for months even as it was evidently growing as a film on my brain. I learned after neoadjuvant TCHP that MRI also can't tell the difference between tumor and active scar tissue formation -- the lymph node that lit up after 6 rounds of treatment -- it was just scar tissue at surgery. I kept asking for more details, how could they know there was no scar tissue if it looks the same, scar tissue is also larger mass-wise than tumor based on my presentation, couldn't they do a metabolic scan (PET-MRI) of the brain to see if there was any effect of treatment? I was told no, that whole brain radiation was my only option. So now I'm going from months of being told "we don't want to hurt you" and watchful waiting to "your only option is to nuke your head". Yes, sometimes whole brain radiation is the only option but recent studies show that as patient live longer that they are experiencing the serious cognitive side effects of whole brain radiation. I had heard that rarely, but it had been done before, that they could just irradiate the cerebellum. My oncology team wouldn't budge though. My partner was like if whole brain is the only option then we are going to talk to more people. And so we did. I was told that without treatment that I had about 4-5 months before a steep decline, and that was after I tracked down a new radiosurgeon who was willing to think outside of the box. She is unusual in that she is very familiar with radiation technologies as she had been involved with LINAC, gamma knife, cyberknife, tomotherapy, and even proton therapy in her professional life. She felt that for my case either tomo or proton was the best option both now and going forward should I need re-treatment. Since I didn't have time to wait to see if the 100 mg dosage of IT Herceptin was going to penetrate deep into the pooled disease we opted to go for partial brain radiation. I had four weeks of daily rads to the back of my head, plus the edge of my occipital lobe and my brain stem to C2. A very uncomfortable 2-hour spinal MRI ruled out disease spread there -- plus I have 4 spinal fluid tests that show no evidence of disease spread. What happened to me is rare but not unheard of and it could have been anticipated. The fact that I was even discussing leptomeningeal disease didn't influence the conversation at all from the beginning --though it wasn't like I was saying what if I have an aneurysm or something. I think they just don't know and so they are blind to the evidence in front of them. The really sad part is that when I look back at standards for screening for brain mets in HER2 gals that by the time I started to have symptoms last spring that I was always going to need a craniotomy and that very likely I was also always going to need to have my cerebellum irradiated -- we just moved out the treatment of those conditions by a few months. Throughout my recently brain rads and going forward I am now undergoing weekly craniosacral massage to keep tissues open and flowing (the posterior fossa is a confined space, they worry about pressure), also weekly vitamin C plus mineral infusions (at an outside facility), continued weekly acupuncture, and nutritional supplements under guidance of my naturopathic oncolgist. I resume IT Herceptin today. My next brain scan is in a few weeks and I will report back on what the findings are. It will still be early but hopefully the keto diet, 18/6 fasting and every other damn thing I threw at it made the rads as effective as it could be -- plus my September LINAC seems like it worked locally where the tumor bed was, so there's a bit of evidence that my cancer mutation is susceptible to rads.