On June 1st I called Mass General again. My throat was still bothering me. I decided to stop taking the binder drug as I believed it was causing my throat to feel swollen. Talked to a nurse and she agreed I should stay off the binder drug and she’d call the next day to see how I was doing. The next day it was pretty much the same. Continued to have pain when I tried to swallow. Her and I talked and came to the conclusion that I had thrush. She called in a prescription for a liquid drug, Nystatin, that I swish and swallow. Within a few days the sores at the back of my mouth were gone. A few more days and my throat was feeling better, but I continued with the Nystatin.
Went to Mass General June 4th. That was the beginning of Week 5 and a new cycle. I was given a new supply of the trial drug for the next 21 days. Met with Dr. Zhu, had blood taken and EKG. Bloodwork was good. We got home around 6:30 – 7:00 pm. Around 7:30 Dr. Zhu called. He called to tell me that my CA19-9 numbers were significantly lower. He told me my number was 36. Let me explain what this means. This number gives an idea of tumors growing or shrinking. When I was diagnosised last year my number was 198. When I finished up with Dr. Hong my number was 168 – this made sense as I had some shrinkage. I was off chemo for almost 8 weeks before I started the trial. My benchmark CA19-9 number was 242 before starting trial–again, made sense because I had a couple of new lesions. So for my CA19-9 number to be 36 was amazing. This indicates that the tumors have shrunk!!!! Yeah!!!!! We will really know what’s going on when I have a CT scan on June 25th.
Because I had the previous week off and stopped taking the binder drug, my phosphate level was down to 2.4. Dr. Zhu ended up emailing me during the week to tell me to stop taking the binder drug as he found out that I didn’t need to take it while off the clinical trial drug. So I began the trial drug again and began taking 800 mg of the binder drug. During that week my hair starts to thin. I was losing more hair than usual when I washed it. My mouth and sores were much better.
Went to Mass General on June 11th. Just blood draw and met with the APRN, Caroline. My oxygen level was 94 the previous week and 94 again. They want it to be 97 or higher. I had been at 96 most of the time. We decided that the coughing was more than likely from my asthma so I need to go see my PCP this week to increase the asthma medication I currently am on. My phosphate level was back up to 6.1. So now I’m taking 1200 mgs of binder drug. And, of course, my mouth sores started up again and the throat is irritated. Nothing is as bad as it was before, but feeling worse than it did last week. I continue taking the Nystatin and refilled the prescription today. I’m taking Advil to help with the discomfort. I’m also doing salt and warm water gargles. Hoping all this helps.
My hair is really thinning. A ton of hair came out in the shower last week and this week. I went to a speciality store this week with my sister Sharon and bought a cap/hat. When we were at MGH I bought another one. I called my hairdresser and she said she’ll cut my hair short on Tuesday and then we’ll take it from there. I will bring the 2 wigs I bought last year to her so she can style them for me. I need to start preparing for total hair loss. I’m hoping it doesn’t happen, but I’m thinking it will. Luckily I have thick hair and even though I’ve lost a lot of hair, it is not noticeable to anyone. But if I just run my hand through my hair I come up with a hand full of hair! YUCCK! I’m not ready for this, but I’m working on it.
It’s crazy how many other medications I’m on now just to tolerate this trial drug and the binder drug, but in the end it may be worth it. Again, looking forward to the CT scan coming up in a couple of weeks. That will tell us what’s really going on and how well the drug is working.
I’ve been pretty busy as my energy level continues to be good. I made the cushion for the bench on the porch, I covered the footstool and made one pillow. I just have one more pillow to finish and I’ll be done with that project.
The kitchen and porch are completely finished. I will post pictures soon. I haven’t taken any pictures of the kitchen since the walls were painted – there’s actually just a small amount of wall that doesn’t have a cabinet or appliance on it. I bought a couple of dresses – one for Jay & Heather’s wedding and one for Kelly & Ryan’s wedding. Got a great deal on both at J C Penney. Went to the bridal shower for Kelly last week. It was very nice – great food, good company and some fun games. Went to graduation party for Gabrielle yesterday. It was very nice also-great food and company. Can’t believe she’s off to college in a few months!
Heather and I spent some time together today preparing labels for her to mail wedding invitations and made some inserts to put into the invitations. She’s hoping to mail them soon.
Thank you all for your continued support, love and prayers. You are my strength through this journey.
