Hi there.
Yes, it has been about a year and a half since I last blogged, and I don't have a good reason. I guess I just didn't have anything I wanted to say.
When we last left off, in June of 2013, I had gotten some bad news. My cancer had spread to other parts of my liver, and to my lung. Since then, things have continued to be their usual up and down rollercoaster ride.
Once I got the news, I immediately went back on chemo, and my tumors started to shrink again. They continued to shrink or remain "stable", as they call it, for more than a year. During that time, I continued to try to live life as normal. While chemo is a Godsend, and has helped me tremendously, one of the drugs gave me neuropathy in my feet. This means my toes are kinda numb, and I used to get horrible pain in them when I had to stand or walk too long. But at the end of summer, the chemo that had worked at keeping the tumors at bay for 2 and a half years stopped working. Things started growing again :( So off that chemo, which has made the neuropathy a little better.
The decision was made to put me on a new chemo called 5-FU (ha ha FU...kinda fitting!) In the meantime, they decided to do another biopsy because there wasn't anything left of my first biopsy, and they wanted to study the make-up of my tumors, to see if there are any mutations. So that took place in late August, and I started the 5-FU. What I hated most about the new chemo was that they started it off at the hospital, but then I had to wear a chemo pump for 48 hours at home. It was portable, but who feels like going anywhere wearing a chemo pack?? I sure didn't. This chemo only lasted 8 weeks, and then an MRI showed it wasn't working for me. When the doctors gave me this news, however, they weren't that upset. Instead, they were very excited about the results of my biopsy, which shows my cancer has a mutation called IDH1. Don't ask me what that is...I still don't quite know. But what the doctors were excited about was a clinical trial happening that focuses only on cancers with the IDH1 mutation. Apparently, somebody has been studying this mutation for years, and has developed a drug called AG-120 that targets the mutation. This mutation can happen in all different kinds of cancers. One study of this drug has been done so far in people with "liquid tumors" (like leukemia and other blood cancers) that have this mutation and the results have been very promising. So now they are trying it on people with solid tumors and are hoping to get the same results. My doctors wanted me enrolled immediately. Of course, nothing can ever be that easy and at first I didn't meet the cut off level for something on the EKG they had to give first. A few doses of potassium and magnesium helped and on my third day of EKGs, I "passed" and was allowed to enroll. I started my new drugs on December 1st. On a positive note, Alex the EKG lady and I are now fast friends!
Because this is what they call a "phase 1" trial, which means it is just starting out, The first couple of weeks were pretty intense. I had to be there for 4 days in a row so once I took the pills, they could monitor my blood for twelve hours, to see how fast my body metabolizes it. Now I just take the pills at home everyday, and go to Boston every two weeks for bloodwork and EKGs. One of the downsides of this drug is that I had to go off the Prilosec I have been on for two years due to the damage chemo and radiation have done to my stomach lining. You can't take it if you are on an acid-blocker because you don't absorb the drug as well. So, within two weeks, I had an ulcer. A bleeding ulcer. Not fun at all. I am now on some horrible pink liquid four times a day. I had an endoscope, which showed the ulcer was healing but my stomach lining was very inflammed. I am still dealing with that, and am eating pretty blandly so as not to set off the stomach acid gods. I think it is going to be an up and down battle.
Soon I will have to have another biopsy, and in two weeks I have scans to see if this new chemo is working. Cross your fingers or say a prayer, people,....I am nervous! I really need this to work.
There has been another change in my life, too. I have left my job, gone out on disability until at least the end of the year. This was SUCH a hard decision. I love my job. I love my co-workers, and mostly my students, and I miss it tremendously. But the fatigue was getting to me, and the stress of everything going on made it hard to concentrate on my job, so I knew it was best to take this time to focus on this new study, to rest, and to just be.
So far, I am not loving being a "housewife." I need more mental stimulation than I am getting. I have decided to clean out every room in the house, starting with the kitchen cabinets. I'll let you know how that goes! I am trying to stay busy so I don't think too much. Because when I think too much I start to struggle with anxiety. While leaving work has lessened some of my stress, it has also created new stress. For one thing, I am bored. All of my friends work so there isn't anyone to play with during the day. For another thing, disability only pays me about 35% of my former pay, so finances are a big stress. And I always get anxious when scans/results are coming up and I can really work myself up without even trying. I am going to explore things like acupuncture to help with this. And I have a friend that does Reike so I will be calling her soon, too!
So that's all the news from here right now. I am working hard at trying to believe this new, targeted therapy is going to help me. I am working to try to stay positive. I'll be honest...I don't always do a good job of this. But I do keep my eye on the prize. My goal is to make it to Zach and Sam's high school graduation, which is in a little over 6 years. Most days I believe I will be there. And on the days I don't...I take an Ativan! But I had a dream the other night. In my dream, I was in the hospital for something, and Sam and Zach were visiting me. They were all grown up. I have decided this is a sign I will be here to see them when they are grown up. And that's what I'm holding on to!
Talk to you soon, and thanks for reading!
xoxo Joanna
