I WROTE THIS IN SEPTEMBER, JUST POSTING NOW!
As mentioned in my last update, I had a biopsy scheduled for July 25th so they could check my tumor tissue for other possible mutations. So I had that biopsy and it was an anxious time for me. We got there for 11 am for the procedure to be done at 12. Well, they never even came to get me until almost 1:30!!!! By then I had myself all worked up. I complained to the nurse that came to get me. And then I started crying!!! Ugh! That’s me! I get mad, express my feelings and then cry because I feel bad that I acted like that. Then all of a sudden Dr. Goyal was there. She is the best doctor. She ended talking with Ray and I for a while. At that time she told us that she believed the large tumor was necrotic. What does that mean? It means that the tumor is dead!!!!! Great news.
The tumor being biopsied was a smaller tumor to the right of the large one. Dr. Goyal stayed with me through the entire biopsy procedure, holding my hand. I can’t say enough good things about her. Anyway, about a week or so later I got the report about the biopsy. It said it was Cholangiocarcinoma and extensive necrosis. Again, part of the tumor is dead!!!
Now we can just hope that what remains active of that tumor has the NTRK mutation and the LOXO-101 trial does it’s job and kills off the rest of it. Of course, there is still another tumor in the liver and several nodules in my lungs, so it’s not like it’s all gone.
I started the LOXO-101 trial on August 19th. I was supposed to start the week before, but the drug company decided to increase the dosage, therefore, time was needed to get things in order for that change. The first day was long. They drew blood over an 8 hour period. It started at 8 am, so Ray and I stayed overnight at the Hampton Inn nearby. We didn’t leave there until 5:30 pm. Long day. At least this time they let us leave the room in between blood draws. They also give me lunch and I shared it with Ray. During the afternoon we went to the Healing Garden. It’s a beautiful little garden area on the 7th floor of the Yawkey building that overlooks Boston harbor. It’s a peaceful place to just sit and reflect.
The following Friday we did the same thing all over again. This time we got out of there a little earlier because I already had my pills. There’s always a delay on the day I get my pills.
We went up the following Friday, Sept 2nd. I had blood taken (as always) and met with the Doctor. At that point we talked about my dizziness and my weight gain. We agreed to just monitor it. I also had laryngitis or hoarseness–no sore throat, no pain.
September 16th we met with Dr. Farago and discussed the dizziness issue, the weight gain and the laryngitis. She examined me and said it seemed that I was retaining water. My ankle was swollen and had started bothering me the day before. I had ‘tweeked’ it the week before and just thought the injury came back. And my knee on the other leg was bothering me. From walking differently to avoid the pain in the ankle!!! We agreed that I would go off the trial drug for a few days and when I went back on, the milligrams would be reduced from 400 per day to 300 per day. I was instructed to call them on Monday and give them an update on me. I had to weigh myself everyday also. By the time I called Monday, I had lost 3.5 pounds, but my legs felt heavy, my fingers felt tight, and my stomach had been really bloated on Saturday. So I stayed off the pill and called back Wednesday. I was down another 1.5 lbs. on Tuesday and weighed the same on Wednesday. But my legs weren’t feeling heavy, and my stomach and fingers were feeling fine, and my voice seemed to be better. So I went back on the trial drug on Wednesday. I intend to keep track of my weight. It was up .5 lb. today. Good news is no dizziness as of today–only 3 doses, but I’m optimistic.
Still not sure about the laryngitis yet. I did go to my PCP last week and she said my lungs were clear, my throat was clear, so she thought it was an allergy. Ironically, I got a call from Dr. Goyal last night. She needed to let me know that the tissue they’ve sent to Foundation One is the last testable tissue they have left and if I was to do another trial, I’d have to have another biopsy. Anyway, that’s for the future. Dr. Goyal told me there was a possibility that lymph nodes in my chest were pressing against something that wraps around my bronchial tube causing the hoarseness. They would take a closer look at my next scans. If my voice doesn’t improve over the weekend, I’ll try to make an appointment with my ENT Doctor next week. I’ve had the hoarseness for a month. My new nickname is ‘Minnie Mouse’!!!
I haven’t gotten the date for my next scans yet, but they should be the first week of October. That will tell us if the trial drug is working and may give some insight on the hoarseness I’ve had.
Ray and I are joining the Manions and Danny and Donna for the Syracuse vs UConn game on Saturday. We’re looking forward to tailgating with them and seeing the game. Haven’t been to a UConn game in a couple of years.
I have to say I”m so excited that the Red Sox are doing so well and looking forward to October. And, the Patriots have done pretty good too without Tom Brady, the Gronk and others for the first two games of the season.
Thank you all for your continued support, love and prayers. I couldn’t do this without all of you. You are my strength.
The fact that the large tumor is dead and one of the other’s is partially dead tells me the prayers are working. Yes, I’ll give credit to some of the trial drugs too, but I really believe in the power of prayer. Thank you Lord Jesus!!! I’m also praying to Archangel Michael and the Blessed Virgin Mary.
Our nephew Derek is getting married to Kelly on October 1st in Moultenborough, NH. We’re looking forward to the celebration of their love. We’ll be staying in Wolfeboro where Ray’s sister lives. They guys will be golfing at a private country club Saturday morning. The wedding is 4 pm Saturday. We are also invited to the rehearsal dinner Friday night. Julie is flying in from Sacramento late Thursday night. Can’t wait to see her!!!! She’ll spend some time in Connecticut with us too. Jay and Heather will get there sometime on Saturday.
