I know it’s been quite a while since I’ve done an update on here! The good thing is, I’ve been very busy and not getting worn out! Yahoo!!!!

To bring you up to date on me, since August my CA19-9 number has been going up. That usually indicates something is going on. When I first started on the BGJ398 trial my CA19-9 was 242. It went down to 24 in July. In August it went to 48, September it went to 98, October to 150. The last blood test it was up to 176. When I had my scan in August everything was good with a little shrinkage of the large tumor. The scan in October showed a new lesion on the liver. Very small, but a new growth! BOOO!!!!!! Because I had growth, I got kicked out of the BGJ398 trial. So when we met with Dr. Zhu a week after the CT scan we discussed a new trial and a new study. To get on a new trial I have to be off any kind of chemo for at least 4 weeks.

So the study/research takes my tumor tissue and they study it in a petrie dish and/or mice. This is exciting for us as this is looking at my cancer and possibly coming up with a personal treatment for me. If not, it could be helpful for others with this cancer.

Because they needed tumor tissue for the study, I had a biopsy Nov 9th. They took several samples from the large tumor and the new lesion. The biopsy went well. A little discomfort, but not bad.  They kept me for 3 hours after because of what happened last time (I ended up in the hospital).  It was a long day!

For the new trial, I had to have several tests for screening.  November 17th I had a CT scan so we have a baseline to measure shrinkage or growth. I also had blood work, EKG and strength test that day. We had to go back to Boston the next day for an eye exam.

Next was waiting for a start of the trial date. It’s turned into a mess! They called last week and asked if I wanted to start on Wednesday, the day before Thanksgiving. I’ve been told the first day will be at least 8 hours long as they will monitor me all day long with blood tests, etc. There was no way that we wanted to go to Boston that day with what the traffic would be. And, more than likely, I’d have to go back on Friday. So I told them no.

I just got off the phone with them again. I was supposed to start December 1st and now it’s changed to December 3rd. I was supposed to go back for blood work tomorrow and now I’m going Monday, November 30th. Another catch with this trial is that I will be put in a slot that will dictate when I take the pill.  It could be Monday-Wednesday-Friday or every day. They will not be able to tell me what slot I’m in until after the blood work is done and submitted to the pharmaceutical company. So when I start on December 3rd, I may need to return the next day or Saturday or Monday. Not sure!

The good news is that I continue to feel well. I don’t have mouth sores, or dry mouth, or lack of taste, my nails are getting better.  I’ve been enjoying eating things and tasting what they really taste like and having the texture they’re supposed to have. I have plenty of energy and have been using it!

 

After the wedding Debbie and I started planning the baby shower for Heather. We had a great time putting together the favors and the centerpiece for the nature theme that Heather wanted. We had a tree and asked attendees to write words of encouragement on a paper ornament to hang on the tree. We also had a diaper raffle, which gave them a great supply of diapers for the coming months. The shower was a great success and Heather and Jason have everything they need to welcome Clementine into the world!!! Of course, we are beyond excited about Clementine! We can’t wait! Due date is January 7th! Right around the corner.  Heather and I decided that Ray is the most excited!  He sees babies on commercials and says ‘we’re going to have one of those soon!’

The day before the shower we joined Aunt Pat, Aunt Wilma, Donna, JR, Kathleen, Penny, Lindsay, the Foran family and Frankie (Aunt Wilma’s friend) for the Irish Club’s bus trip to New York. We had a great time. We went on the subway for the first time.

That was an experience! We went to the September 11 Museum.  What a sobering and sad experience. They did a wonderful job paying tribute to those that lost their lives that terrible day. And a tribute to those that helped to save lives also. You really need several hours to go through the entire place.

We went to O’Lunney’s. Thanks to Ray we found out there are actually three O’Lunney’s in New York City owned by the same family. lol.  We went to one of them before we got to the right one.

Kathleen, Ray and I got our workout that day!! We also had a taxi ride from hell!  We had plenty of laughs. Ray led us astray in the subway station too! We were on the subway on our way to the Museum when they announced the track was blocked and gave instructions to get off and take another train. We went up and down stairs a few times and finally figured out what train to get on and we were on our way!  Oh yeah, I also had to go to the Hersey Store in Times Square and get some Twizzlers!

Another good thing is that my hair is growing. I’m going to see my hairdresser at the end of the week to see what she can do for me!

Another good thing. The last CT scan finally gave the measurements of the large tumor. When I was diagnosed it was 6 inches. It is now 3.6 inches by 2.6 inches. That is thanks to the BGJ398 trial drug. The new drug is similar to the BGJ398. The new drug is named TAS-120. We found out that I also have a mutation in my blood that the BGJ398 could not fight against and more than likely that’s why I got the new lesion. The good news about TAS-120 is that it can also fight the mutation that is in my blood. So they are feeling very optimistic about this new drug.

Dr. Zhu is also working on immunotherapy trial for me. We’ve got a great team of doctors and staff at MGH. I will be seeing a new doctor for this trial. Her name is Dr. Goyal. She is very nice and knowledgeable. I will continue to meet with Dr. Zhu also.

Well, this is more than enough information for everyone. Thank you for your continued prayers, love and support. You are my strength!

Have a Happy Thanksgiving! And if I don’t get back to this blog, have a Merry Christmas and a Happy New Year!