Monday, March 5, 2018

More Story, More Hope, More To Worry About

More Story:

I met my parents at the regional hospital where she received her cancer treatments the last time and met with her oncologist. Like I have come to expect, they tend to be pretty vague at times unless you really pin them down (kind of like a politician) and they didn't tell us too much. At first he told us why he wanted to use this immunotherapy treatment over conventional treatment (i.e radiation and chemo) and under further questioning said that he wanted to do this because she showed a favorable mutation in her glioblastoma that responds well to a particular drug (Keytruda). He then mentioned that the mutation was very rare overall but common in people who had Lynch Syndrome. Because of that he said they would do a genetic test of my Mom to see if she was positive for it and if she was, they would do me next. After I pressed him a bit further about it, he told me to google Keytruda and Lynch Syndrome when I got home.

There was much debate as to whether or not insurance would cover the treatment at $80,000 a dose but after issuing the prescription and checking, they did and a bit later my Mom was in their infusion room getting her first dose through an IV which I calculated to be almost $2700/minute. My mom will get another dose in three weeks and then another MRI and if there are no signs of cancer, she continues for the foreseeable future. If there are signs, she continues with the immunotherapy but will receive additional radiation.

More Hope:

After I get home and start doing some research, it appears that yes, the particular mutation that my mom's cancer has is rare and yes it responds well to Keytruda. However, it is so rare, that there isn't much information on it. But what information is out there points that 75% show a reduction in the tumor and 40% are still around two years later and are considered stable at this point and there is no upper limit to their longevity, i.e. they are for all practical purposes in remission. These are a lot better odds than the essentially 0% I have been reading about for regular glioblastoma. Of course 60% odds of death are pretty sobering and they are quick to say it isn't a cure, if it means more time, it means hope and I'm all for that right now.

More To Worry About:

Unfortunately, my Mom is a great candidate for being positive for Lynch Syndrome since her mother (whom I am helping to take care of across town at age 84) had colon cancer when she was in her mid 40's. Lynch Syndrome is suspected of causing around 6% of all colon cancers and can cause other types of cancers as well including brain cancer. Lynch Syndrome can be hereditary. If my mom has it, I have a 50% chance of having it as well. If I am positive for Lynch Syndrome, I have an 53% chance of developing colon cancer at some point in my life and 15% chance for other types including brain cancers. I'm not sure how to digest all this and I guess right now I won't until genetic testing for my Mom occurs at her next appointment in three weeks. Even then, I will need to get tested to know for sure.

5 comments:

Kelly said...

I've seen that drug advertised on TV! The price leaves me flabbergasted, but I guess I shouldn't be. I'm glad it's covered by her insurance.

As I always try to tell myself... don't worry until you have something to worry about. In other words, wait until you're tested. You have a 50% chance you're NOT positive.

Pumpkin Delight (Kimberly) said...

So much to digest. I'm relieved to hear that insurance is covering it as these days it's hard to know.
I'm with Kelly on staying positive, but also would advise (although I'm sure this has occurred to you as well ;) that this information just tells you you have to be very very diligent, more than the average person, with your health. That way if anything does pop up, you are at the early stages of things and can nip it in the bud asap. You're dealing with a lot, and I'm sorry about that. Hang in there.

Ed said...

Kelly - Actually I have less than a 25% chance. At worst case, my mom has a 50% chance assuming my grandmother is positive (but she doesn't need testing at 84 years old). There is a chance it is a fluke meaning my mom has less than a 50% chance and when I multiply by my 50% chance it ends up somewhere less than 25%. Saying all that, I haven't lost any sleep over it and probably won't. Whatever comes will come and there is nothing I can do about it right now.

Pumpkin Delight - Yes, my first order of diligence will be to be scoped which I haven't been looking forward too.

Susan said...

It's amazing how much has been done, as far as researching cancer and alternative treatments. However, I did notice that you had to (almost) badger your mom's doctor in order to get the information. Really? This is why it is so important for cancer patients to have an advocate with them at all times. There is enough to absorb when you are diagnosed, let alone knowing what questions to ask. You are such an excellent advocate for your mother. Fingers, toes and anything else that will cross, crossed.

Ed said...

Susan - Living with a doctor, I know many people don't understand what is being told to them by doctors much less to an in depth level. I see it with my mom when her interpretation of what the doctor told them and what I understood are varied. So I like to know enough that I can "google" up other descriptions to fully understand it, in this case, what the actual mutation was.