The "C" Word - Pseudomyxoma peritonei cancer blog - My journey through my husbands treatment: December 2017

In the world of cancer treatments, some have more available options than others. Many will respond to chemotherapy and/or radiation treatments. Cancers of lymph nodes or blood streams are eligible for these treatments.

In the world of PMP cancer, the treatments are very limited. There are four types of Appendix Cancer. Higher grade or fast moving ones may respond to chemotherapy. Radiation is never an option as you cannot radiate a whole belly and that’s where the cancer typically resides. George’s cancer is of the “slow growing” variety - - which you think would be good and on some level is. But it also means that chemotherapy will not work as the cancer cells look so similar to normal cells (hence the “pseudo” part of the name) that the chemo will not know which cells to go after.

In October 2015 we were told (again), that chemotherapy is not an option. The doctor had said it could speed up the “end” versus prolong it as it would make George so sick and compromise his immune system that when he needed to fight the cancer, he wouldn’t be able to.

Forever the optimist, George keeps his eyes peeled for other options. He recently learned of a clinical trial for “any rare cancer” using immunotherapy drugs. He sent an inquiry to his oncologist to find out if he would qualify for this trial as it is hard to know exactly what the parameters are.

I’ve been more of the skeptic in this. When I hear that drugs will make him sick, the last thing I want is that for him – and for me to have to deal with as well. I’ve stopped following the PMP facebook group on a regular basis because I was watching so many people we’ve been following die – and many of them after having endured months or more of chemo treatments. It was becoming very difficult for me to maintain my own upbeat sense - so though I check it on occasion, I no longer get notifications about how people are doing. I need to do this for my own sanity.

I hate that I’m the skeptic – because it sounds like I’ve given up all hope. That’s not entirely true. I try my best to be upbeat in all of this. But every time George has a twinge of pain or discomfort, it reminds me (and him) that the cancer has not stopped its growing phase. And, though he’s managed to stay out of the ER for over five months (knock on wood), it’s because we’ve been able, thus far, to self-manage the symptoms. At some point this may change – but we feel like we’ve dodged a bullet for now. The C word is never far from our thoughts no matter what distractions we find throughout the day.

A year ago we were not sure if George would be here by the end of 2017. The prognosis after the last surgery was bad. Only 20 months between first and second surgery when there was so much more mucin than we figured on. We are now going on 17 months since the second surgery. We feel like we are biding our time waiting for the shoe to drop. For our world to get rocked again.

So, as I said, George found out about this clinical trial. We met with the oncologist on Friday afternoon. He hadn’t yet heard back from the local study lead but, as he perused online while we sat with him he discovered that the local contact was someone he knew. He excused himself from the room while he put in a call to this doctor. He returned to the room and explained in as simple terms as possible the parameters. To be considered for this trial, the patient must have gone through all possible “standard of care” treatments for their cancer. For PMP, that means George would first have to go through chemotherapy treatments as this is a secondary “standard of care” though not a great one. If we had done that, he could have been considered for this Phase II trial which involves giving the two drugs to patients to see if it has any affect. He also said that this particular combination is “quite lethal” and will make patients quite sick. (The definition of immunotherapy is: the "treatment of disease by inducing, enhancing, or suppressing an immune response". Immunotherapies designed to elicit or amplify an immune response are classified as activation immunotherapies, while immunotherapies that reduce or suppress are classified as suppression immunotherapies.)

In other words, George is not a candidate for immunotherapy. We left feeling somewhat discouraged that this not an option for us.

On the other hand, we give thanks that George is here for another Christmas and is feeling well enough to do things with the twins the week afterward. (We hold our breath that he makes it through the week as the last time we had them he ended up in the ER.)

Chemo – not an option

Immunotherapy – not an option

We have limited options available to us – and this is why we “fight” and why we believe in fundraising for ACPMP Research Foundation (They are able to grant 5 - $50,000 grants this year thanks to donations and we are so thrilled we played a huge role in that this year, having raised $19,000).

A Conflict of Seasons

Growing up on the East Coast, the seasons were typically fairly delineated by what unfolded with nature. Green grass and flowers in the spring, hotter weather in the summer, leaves changing colors and then falling in autumn, dead grass and snow covered lawns and streets plus cold in the winter months.

Here on the West Coast, things are a little less easy to tell. We have more like three seasons rather than four and, even then, they are not always easy to figure out.

As I took a walk today, December 8, 2017… I marveled at the spring like flowers still blooming, the fall foliage of the trees and yet, some trees now naked having lost them to the ground already. The calendar says that we are at the end of “autumn” and headed into winter in just two weeks time. You can tell that it’s winter by the Christmas decorations that have sprung up. Here, in California, we get more creative with decorating. Ornaments hanging from palm trees and fruit trees. Some Christmas decorations still have a hint of fall with pumpkins still on porches. Even at my house. Yes, it’s confusing. What season is it, exactly?

Our human lives also have “seasons”. The Spring of our lives from birth to perhaps our twenties – when we are still exploring and learning so much about ourselves and others. Our Summer months in our thirties and forties when we are still vibrant and alive and yet we are seasoned enough to make it through thetumultous years of teenage children and aging parents and all of the other complexities that heat up our lives. We welcome Autumn in our fifties, sixties and maybe even seventies as we prepare to shed ourselves of our jobs and, in most cases, have let our children grow and go off on their own leaving us with less burdens than before. Our Winter years are for sitting more often, or watching out the windows of our lives and enjoying the reward of a life well lived.

We are conflicted – our minds tell us we are still twenty while our bodies often don’t lie about our age! How we hate that! George and I (and many of our friends), lament the fact that our minds tell us that we can still do all the physical things of our “spring” – yet attempts to do so often fall short – sometimes far short and remind us that it is autumn. We don’t want to give up and give in to that – not yet anyway. And so we fight body and mind, again and again. We struggle with that. George struggles with that even more since his body is determined to remind him daily that he is well into his Autumn years. Winter will come in it’s due time. Just..... not.... yet.... please.

Here are photos from a fall-nearly-winter-day in California:

Spring and summer (flowers):