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.

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