They kicked me out of the clinical trial. That's what happens when you have progression during treatment. My liver and lung tumors are still stable, but my recent PET Scan showed more tumors in my spine and pelvic bone. I had been having increased pain in my right hip for about a month, but I had also been trying to ignore it, which isn't the easiest thing to do. Sometimes the pain is so bad that I become nauseous. Cancer is a tricky and evil, little devil.
I was hoping that I could have radiation on the right hip, just as I had on the left hip last summer. However, there are so many areas of progression on my right hip that my oncologist says that it would be impossible to "spot weld" me. Radiation is very precise. We can't go to the radiologist and say, "radiate the whole right hip."
I'm now on a two-week hold to get into another clinical trial. I'm not at the point that I want to give up, but this morning, I have to say that I understand cancer patients who throw in the towel. It's all mentally and physically too much to handle. Getting ready for work this morning with so much pain in my hip that I thought I'd throw up, I also understand why cancer patients quit their jobs and start collecting disability. It's relatively easy to get disability if you're diagnosed as a Stage 4 cancer patient. I'm not in love with my job, but I do prefer to continue to work. However, today all I wanted to do was to climb back into the bed and cover my head. Even though I've been off the Taxol for a while, the neuropathy in my hands and feet is lingering. The pain's not bad, but the tingling and numbness still make it difficult to get things done. Taking a shower just involves too much rubbing, and the tingling is bad for several hours afterwards, but I can't walk around funky and scaring people either.
Yesterday, I had the PET Scan. I couldn't eat prior to the scan, and I can't take any pain killers on an empty stomach, so I was in pain and could barely walk all day. I could have eaten after the scan, but all I managed to get into my stomach was some ginger ale. The nausea was too bad at this point. After the scan, I had to meet with my oncologist and then have the Zometa infusion only. Since I'm no longer in the clinical trial, there are no more Avastin infusions and I can discontinue taking the daily pills of Everolimus (or placebo). The contrast that I drink before the scan gives me diarrhea and on top of the nausea from the pain, I didn't know if I was coming or going. I've been on Zometa for almost four years, but I still tend to have an allergic reaction every now and then. Of course, yesterday would be that day-chills, fever, and body aches. Some time during the night, the fever broke, and I finally got warm. I was then able to eat a little, take some pain killers, and then sleep soundly for the rest of the night. And when I say soundly, I mean that I only woke up every hour for the hot flashes, which are pretty routine. Consequently, I'm just a little off-base this morning. I have enough pain killers in me now to downgrade the pain to "annoying".
Before each clinical trial, there are always several tests that have to be done. Next week I'll have another CT Scan, even though I just had one last month. I'll also have a bone scan and an EKG. All of the blood work has to be repeated.
The new clinical trial involves Xeloda. Xeloda is a chemotherapy pill, similar to Everolimus. I'll take the pills twice a day, every day, for two weeks, and then I'll have a rest week. That will complete a cycle. The cycles continue until progression or toxicity. Xeloda is supposedly a relatively easy chemotherapy, if you follow the rules. My oncologist told me several times during our discussion to be careful of the diarrhea. If on day 10 there is uncontrollable diarrhea (defined as spending more time on the toilet than off of the toilet) immediately stop taking the Xeloda and call the treatment center. Do not (and she repeated this several times) continue to take the pills up until day 14. She said that cancer patients are so good about staying on their medication that they become stubborn about stopping, thinking that they can tough out the side effects. This will not be the time to be a trooper. She said that it was like having a fire and then throwing gasoline on it. By day 14, she has to admit patients to the hospital because they can not stop the "pooping" at that point. If I call the treatment center, they can adjust the dosage for the next cycle and prescribe something for the diarrhea. This side effect can be fixed, so don't suffer through it.
The other common side effect is redness, swelling, blistering, and peeling skin from the hands and feet, the infamous hand-foot syndrome. Just what I need-some company for my neuropathy. It's important to keep the skin well moisturized (udder cream is recommended), and cold compresses will help some with the redness and swelling. Flip-flops are the shoes of choice.
Other than that, the other possible side effects are typical of all chemotherapy drugs-fatigue, hair loss, vomiting, nausea, fever, infection, bleeding, mouth sores, and dizziness.
There are three "arms" of this clinical trial. We won't know which arm I'll be in until the end of the month. If I'm placed in Arm A, in addition to the Xeloda, I'll have a 60 minute infusion of Ramucirumab DP (the trial drug) once per cycle. If I'm placed in Arm B, I'll have Xeloda and a 60 minute infusion of IMC-18F1 (another trial drug) once per cycle. If I'm placed in Arm C, I'll just have Xeloda. The good thing about being in Arm C is, if I have further progression, I won't get kicked out of the clinical trial right away. I'll then be placed in Arm A or Arm B until I progress again or until the toxicity warrants taking me out of the trial. Not that I have any options, it all sounded good to me, so I signed and dated all 29 pages of the consent form and had my little consultation with the research nurse.
While I was typing this post, I got a call from my oncologist's office. My newest issue is low potassium. I was instructed to drink plenty of orange juice and eat lots of bananas. I love orange juice. I absolutely hate bananas. I can't even stand the smell of them. While I had her on the phone, I asked if I could stop taking the blood pressure medication since I was no longer having Avastin, which has been spiking my blood pressure for the last 10 months. I was told that I have to continue taking the pills for another couple of weeks to see if my blood pressure stabilizes. Now that I think about it, in my delirium, I forgot to take the pill last night, so I'll make sure that I take it tonight.
I'm debating whether I should go to the North Coast 24-Hour in Cleveland, OH this weekend. I've had too much pain to run/walk this week. Long periods of sitting makes the pain in the hip worse, and it's a 9-10 hour drive. Two weeks ago at the Woods Ferry 24-Hour in Chester, SC, I was only able to do 31 miles. I was just too tired and had too much pain to make a serious go at it. I took a six hour nap after my first two loops (7.75 miles per loop), and then I just hung out with the other runners and volunteers after my next two loops. I did a little better this past weekend at the Bartlett Park 50K in Memphis, TN, shaving off about 45 minutes from last year's finishing time. I felt good all day, managing the pain killers well enough that I wasn't in too much pain. So, I'm not sure how North Coast will go.
Fortunately, life goes on. Maybe I should start training in flip-flops. Or maybe now would be a good time to start running barefoot.
5 years ago