For two years, I was on a targeted therapy drug, and it did its job. My blood values were beautiful and stable. But while it kept the cancer in check, my doctor wasn’t happy with the thought of my staying on medication for the rest of my life. So toward the end of last year we made the decision that come January 2019 I would stop taking the medication and we would see how I did.
Apparently because I can never do anything the easy way, come the beginning of January, I contracted scarlet fever and wound up in the hospital — the same week I was to see the doctor and come off the medication. Well, with the particular medication I was on, the first thing that happens when you get sick, is you stop taking the mediciation. But I was going to stop the medication anyway, so no biggie right? I just had to do it with a little dramatic flair (which I could have done without).
Come May, my values had already creeped outside the normal range. So we went into “watchful waiting” mode. No need to take action, but close monitoring was required. In July my white counts had jumped up, but were still just under where we needed to take action. Between the July appointment and now, I knew my values were going further and further out of whack. Primarily because my fatigue levels have significantly increased.
I had an appointment with the oncologist this week and sure enough, it’s time to take action. The decision was to try another protocol than the targeted therapy drug, as the doctor was not happy that the “remission” only lasted a brief 5 months. She would like to try something to hopefully give me years in remission rather than months.
I still don’t know exactly what the protocol will be, but I do know it will involve full-blown infusion chemo drips. While NO ONE gets excited about having to go through this process, I am focused on the trade-off. Six months (most likely) of treatments now, so I can have some chemo-free years. The treatments will probably start in the next week or two, so I thought I’d dust off my site so I can post updates as to how things are going.
Like last time, I’m sure there will be decent days, and dreadful days, but I am going to get through it all in the best way possible.
I am getting to this post a little late because things happened fairly quickly and I have been on the tired side of late — kind of like the kitten passed out in the picture. After my latest cold, which took a few weeks to get rid of, I went back on my chemo treatment and when I went to the oncologist, while my leukemia values had improved, my immune system values had not, so she decided to move forward with a treatment to boost my immune system. Remember how happy I was to be skipping the chemo chair this time around? Well, I will now be going for a monthly infusion to help my immune system rally so I am not so prone to getting ill. Eight hours and four bottles worth once a month.
My doctor was a little down with my results. My lab results are bad. My scan results are bad. But I was ready to dance a jig because the scan results had one result that made me very, very happy. I have been having near constant pain under my left rib cage for a few weeks, and eating certain foods made it extremely painful, which I have been finding out by trial and error. When with the oncologist, we discussed and we both felt it might be an enlargement of the spleen. Which is something you DON’T want. The scan results showed that my spleen was perfectly normal and the area where the pain is coming from is where there are some lymphoma lumps taking up space. We’re getting ready to blast those with chemo, so they will be going bye-bye, and I’ll just have small, soft meals in the meantime. But there was one little problem. I didn’t have the chemo meds yet and didn’t know when they would arrive. My doc got the oncologists office on the line and asked them to find out what was going on as he wanted me on the chemo immediately. There had been a slight mix-up and the meds had not been ordered, but they got it straightened out same day, and I received the shipment yesterday.
The chemo comes from a specialty pharmacy and so far I am incredibly impressed. They provide a mechanism to help you remember whether you have taken your medication or not as well as timer to put on the bottle cap that will alert you that it is time to take your next dose. And for me, this is fabulous. I don’t do pill dispensers well (it is such a hassle to fill them for me), so the little thing to flip it to show that you’ve taken it IS something I can do. Especially as it sticks directly on the bottle itself. And the timer??? Brilliant. Especially when I lose track of time so easily. Then after they arrived, the pharmacist called and went over how I am to take the medication, what to do, what not to do, and to let me know that they had trained staff available via phone 24/7 if I had any questions or couldn’t reach my doctor.