Archive for April 9th, 2018

What’s next? We have options…

I had an important appointment with my cancer doctor today.

Short version: We will begin another longer round (10 days) of the same chemo drug as soon as possible, then play the waiting game again. We may use another drug with the 3rd round of chemo if needed. My doctor will work hard to make sure I get oxygen, as breathing was a major problem during this last round of chemo.

Long version:

I have 2 new gene mutations:

The NRAS gene, found in about 10& of patients with my type of cancer. There may be some clinical trials, but most of the time the trials are for patients with an organ cancer, not blood cancer.

The SMC3 gene, found in about 1% of patients with my type of cancer. This gene has an antibody therapy called Mylotarg that can be used either alone or with chemo. We plan on possibly using it with round 3 of chemo. Normally there are 2 doses, given on day 1 and 5. I will need to be in the hospital for a couple days with each dose in case I have an allergic reaction.

The chemo pill I started last Friday is to hopefully bring down my white cell count, which is high (this is not good and is directly associated with the disease). It will bring down my other blood counts as well, like with any chemo drug.

Once my blood counts stabilize, we will plan on doing 10 days instead of the previous 5 days of the same chemo drug. This could be any day.

My doctor confirmed that unless we can get this under control, we aren’t talking about months that I have left.

My doctor is going to do whatever possible to get me on oxygen. My body’s biggest problem with the chemo was that I could barely breathe for a few days. I feel like I could tolerate a harsher chemo drug if I could breathe better. I have an appointment tomorrow to do a walking test. I will have to use an assisted device (rollator) for the test. Hopefully I can walk fast enough for my lungs to show how terrible they can be. I also have an appointment tomorrow with Infectious Disease to look at my legs. I will also get more bloodwork tomorrow, and I have my first appointment with my therapist since my relapse…it will be a fun talk.

I plan on getting another update out tomorrow on bloodwork & the walking test. Hopefully no additional drama is thrown my way in the meantime.

The storm is here, and getting worse

Short version: I began to feel terrible Monday April 2. I’ve had small spurts of good times, but I probably haven’t had a full good day since then. I’m very fatigued and retaining a lot of fluid, therefore I can barely stand or wear shoes. I still can’t wear pants because I’m so swollen in the torso. My breathing has also been worse and I barely have an appetite. There is consistently more cancer in my blood as time goes on. I will have more news after tomorrow’s appointment with my cancer doctor.

Long version: The percentage of cancerous cells in my blood has gone from 16% (when they first found it March 1st) to 82% (today). I think we need a harsher chemo drug, which was needed to get me into remission the first time around. I So far, I’ve had 1 round of chemo (3/21 to 3/25), and I began a chemo pill this past Friday (April 6th). I have only needed a blood and platelet transfusion once, which is good. My white cell count is still high, which is bad. I meet with my cancer doctor tomorrow to discuss the gene mutation results (which she wants to discuss in person…uh oh), and to talk about what comes next. We don’t want to end up killing me before we kill the chemo. Since last Wednesday my swollen legs have been red for about 3″ near the ankles, and the tops of my feet. I’ve seen 4 doctors who all say they have not seen this exact thing before. i can’t tell you how many times I heard that, and 99% of the time it’s something bad. The redness has remained the same over these last few days. My legs and feet are very painful. My hands and wrists are very painful and swollen. I am swollen all over & can barely move. I’m starting to feel claustrophobic in my body, it’s quite horrible. I’m also feeling very panicked that I don’t really have anything planned for my death. Some notes here and there, a death notification form on the blog, some contacts in my phone. I feel more panicked the more those bad numbers go up. Things are getting pretty scary.

On a more positive note, I can’t thank everyone enough for all the well wishes, hugs (virtual ones too!), the stuff, and just everything. I truly feel loved and special!

Also, I am afraid that I will not get the glyph of my Warframe idol (*cough* Tavier) before I die…videogame reference. The person who I will my account to must be sure to earn it if I don’t :)