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agness · 12-23-2015, 10:09 AM

--- part 9 ---

I got my Herceptin ongoing just like every HER2 gal. Was tolerating it okay though it did slow hair growth and the runny nose this and worries about heart damage weren't much fun. Thankfully my echocardiograms were all perfect -- I even got a copy of all of them to be sure they weren't just placating me with the results (telling you it is good when the results are questionable for instance).

Then it was 3/4 of the way through the year, after about my 13th dose, I was driving home from the hospital and I had my first migraine with a visual aura where my vision was blocked by weird colors and shapes around the periphery. It was almost as if I had been staring into a bright light and was having an afterimage -- but it was the middle of the afternoon. I let my oncology nurse know and thankfully the episode passed within 15 minutes.

I got my 14th dose and my limbs began to ache, arms and leg bones were hurting so much day and night and it was disturbing my sleep. The oncology nurse said take ibuprofen. Ibuprofen? My there was deep pain and it was clearly coming from the Herceptin.

I started to research how they established Herceptin dosing schedules. They looked at two years versus one year. They looked at half a year versus a full year. They observed the least toxicity and the best patient outcomes with a year as an average. But some patients needed more, and some did fine with less -- they just never identified (for any number of reasons) which patients were which.

I don't know if you have noticed but they say HER2 shows up in about 1/5 of the population of breast cancer patients -- about 20% of the time. What many studies failed to do was separate out those who are ER+ from those who are not -- we are each about 10% of the total of breast cancer patients. This affects each of us in that some patients will respond to certain treatments and some won't. Some patients are more likely to develop certain types of mets. It is very logical really but they make you feel like it isn't. That is because the research collection to this point has been quite poor.

TCHP was developed by taking as established protocol, TCH (developed out of UCLA) and tacking Perjeta on to it when it was approved to treat early stage, locally advanced HER2+ patients who were getting neoadjuvant chemo. It was never studied in this population, but the FDA took a chance. I'm grateful that they took that chance for all my HER2 sisters since it was started in use in September/October 2013. I started in March 2014, about 6 months later. This early adoption was why I found no medical research articles about use of or significance of the addition of Perjeta.

In the breastcancer.org forum I started a compilation of patient results, I wanted to understand how well it was working out for us this unstudied TCHP. I compiled a statistically significant number of 35 persons this past summer (2015) and found that if you were HR- you had a slightly greater chance of a PCR, but that it was really split between those that did after 6 rounds and those that didn't -- you had almost the same chance of having a PCR if you were HR- as HR+. This tells me that there are subtypes for each of these designations. Even for those who didn't have a PCR there was significant shrinkage though, which is great because any disease diminishment increases overall survival.

The earliest studies looking at neoadjuvant TCHP are due out in Summer 2016 when the first patients will be about three years in and early overall survival stats will start to become evident. When the big ASCO and SABCS meetings happen more articles are published each time with more findings about Perjeta (Pertuzumab). Take a look at PubMed if you are interested in the latest.

So, back to me. Dose 15 more aching. It was awful. I went back and forth. I thought really hard about it. Finally I decided, with some agony, that I should stop at dose 16 instead of 18. I told my medical oncologist with all the information that we had so far about my health and the PCR that if my HER2 was going to come back it was going to be in spite of treatment and two doses wasn't going to make a difference.

Those words were quite prescient on my part and I hear them echo over and over since my brain mets diagnosis.

12-23-2015, 10:09 AM	#17
agness Senior Member Join Date: Aug 2014 Location: Seattle, WA Posts: 285	Re: My leptomeningeal journey --- part 9 --- I got my Herceptin ongoing just like every HER2 gal. Was tolerating it okay though it did slow hair growth and the runny nose this and worries about heart damage weren't much fun. Thankfully my echocardiograms were all perfect -- I even got a copy of all of them to be sure they weren't just placating me with the results (telling you it is good when the results are questionable for instance). Then it was 3/4 of the way through the year, after about my 13th dose, I was driving home from the hospital and I had my first migraine with a visual aura where my vision was blocked by weird colors and shapes around the periphery. It was almost as if I had been staring into a bright light and was having an afterimage -- but it was the middle of the afternoon. I let my oncology nurse know and thankfully the episode passed within 15 minutes. I got my 14th dose and my limbs began to ache, arms and leg bones were hurting so much day and night and it was disturbing my sleep. The oncology nurse said take ibuprofen. Ibuprofen? My there was deep pain and it was clearly coming from the Herceptin. I started to research how they established Herceptin dosing schedules. They looked at two years versus one year. They looked at half a year versus a full year. They observed the least toxicity and the best patient outcomes with a year as an average. But some patients needed more, and some did fine with less -- they just never identified (for any number of reasons) which patients were which. I don't know if you have noticed but they say HER2 shows up in about 1/5 of the population of breast cancer patients -- about 20% of the time. What many studies failed to do was separate out those who are ER+ from those who are not -- we are each about 10% of the total of breast cancer patients. This affects each of us in that some patients will respond to certain treatments and some won't. Some patients are more likely to develop certain types of mets. It is very logical really but they make you feel like it isn't. That is because the research collection to this point has been quite poor. TCHP was developed by taking as established protocol, TCH (developed out of UCLA) and tacking Perjeta on to it when it was approved to treat early stage, locally advanced HER2+ patients who were getting neoadjuvant chemo. It was never studied in this population, but the FDA took a chance. I'm grateful that they took that chance for all my HER2 sisters since it was started in use in September/October 2013. I started in March 2014, about 6 months later. This early adoption was why I found no medical research articles about use of or significance of the addition of Perjeta. In the breastcancer.org forum I started a compilation of patient results, I wanted to understand how well it was working out for us this unstudied TCHP. I compiled a statistically significant number of 35 persons this past summer (2015) and found that if you were HR- you had a slightly greater chance of a PCR, but that it was really split between those that did after 6 rounds and those that didn't -- you had almost the same chance of having a PCR if you were HR- as HR+. This tells me that there are subtypes for each of these designations. Even for those who didn't have a PCR there was significant shrinkage though, which is great because any disease diminishment increases overall survival. The earliest studies looking at neoadjuvant TCHP are due out in Summer 2016 when the first patients will be about three years in and early overall survival stats will start to become evident. When the big ASCO and SABCS meetings happen more articles are published each time with more findings about Perjeta (Pertuzumab). Take a look at PubMed if you are interested in the latest. So, back to me. Dose 15 more aching. It was awful. I went back and forth. I thought really hard about it. Finally I decided, with some agony, that I should stop at dose 16 instead of 18. I told my medical oncologist with all the information that we had so far about my health and the PCR that if my HER2 was going to come back it was going to be in spite of treatment and two doses wasn't going to make a difference. Those words were quite prescient on my part and I hear them echo over and over since my brain mets diagnosis.