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Update on TAS 120 Trial

Apr20

I know it’s been 3 months since I posted an update!  We’ve been going to Boston once a week since December with the exception of 2 times.  It looks like that will be our schedule.  The cycle of taking the drug is 3 weeks, so we won’t have to go to Boston on week #2.  Ray will see if they will allow me to have blood work done at Harry Gray on week #3 and sent to Mass General.  We should find out about that within the next week.

Anyway, I’ve had two scans since last writing and both have been stable.  The one I had March 1st had shrinkage in the lung nodules.  The scan I had last week showed shrinkage of 2 of the 3 tumors in my liver!  When we went to my appointment yesterday I asked to see the scans and it was nice to see that the tumors are so much smaller than when we began this journey almost 2 years ago.  Another exciting thing is that my liver is also shrinking–this is a GOOD thing!  It means that the inflammation is going down and the drug is working!

The large tumor, that was 6 inches when diagnosed 2 years ago, is now 3.5 x 2.2 inches.  This tumor was 3.75 x 3 inches on previous scan.  Another tumor in my left lobe was 1.93 x 1.9 inches on previous scan, is now 1.73 x 1.73 inches.

New sweatshirt. Bile Duct Cancer Messed With the Wrong Woman!

New sweatshirt. Bile Duct Cancer Messed With the Wrong Woman!

I have to watch my phosphate levels on this drug.  I think I’ve got it down pretty good now.  I can’t have any fish because it’s way too high.  I can have tuna fish and shrimp though.  I could have one piece of pizza, but I’d rather go without.  If I stick to one serving (1/2 cup) of vanilla ice cream, it’s high for a snack, but I can do it.  Haven’t done it yet though.

A lot of our time has been spent with our beautiful Clemmy!!!  She lights up my life!  I’m so in love.  And, of course, so is Ray.  Heather calls him the baby whisperer!  She is growing day by day and is a bundle of joy.  She’s full of energy and likes to be moving around even though she’s not able to crawl yet!  She likes to stand up and sit down in my lap and smiles all proud of herself.  She tells a good story too!  And we’ve gotten a few laughs out of her too.  Can’t believe she’s just about 4 months old already.  We are so fortunate that Jason and Heather live nearby.  Jason picks Clemmy up from daycare and stops by for about 1/2 hour several days a week and we’ve babysat numerous times and have had for entire day’s also!!!  Loving every minute of it!

We’re hopeful this drug can do some damage for a while.  Downside is that I do have fatigue.  If I do anything around the house, it exhausts me beyond what is very hard to describe.  It does aggravate me, as I like to be doing something.  For the most part I’m conserving my energy for visits with Clemmy and social events.  My mouth also is sensitive to certain tastes and gets dry.  I’ve got some things to help with that.  Important thing is that I continue to not have any pain.  I’m hoping to do an update in a few weeks when I hit the 2 year mark.  I’m enjoying proving that first doctor wrong!!!!

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Just out of the bath!

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Yes she is the coolest girl ever!

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Asleep in swing at Nana & DeDa’s.

Hanging out with Mommy.

Hanging out with Mommy.

CT Scan Tumor Shrinkage

Jul2
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View from the Healing Garden at Mass General

Got back from Boston around 5 pm tonight. Long day! Had my eyes examined, EKG and blood work. All is good. As you all know, Dr. Zhu told me last week there was “dramatic shrinkage”. Julie has calculated the percentage of shrinkage for the 3 areas where there are tumors.

Shrinkage in the lungs is 48%
Shrinkage in the lymph nodes (chest) is 33.3%
Shrinkage in the liver is 24.6%
Overall shrinkage is 30%

We are so excited about these numbers! Dr. Zhu is excited too!

The liver mass was 15 cm when I was diagnosed. It was down to 14 cm in April when Mass General needed a benchmark for the trial. 15 cm is 5.9 inches. 14 cm is 5.5 inches. The liver mass is now 11 cm, which is 4.3 inches. This means that with the initial 10 months of chemo the mass in my liver reduced in size by .4 inches. And with just 2 months (or 42 days) of the clinical trial drug, the large mass went from 5.5 inches to 4.3 inches. That’s a 1.2 inch decrease in size!! This is just amazing! We are now calling this pill the Magic Pill !!

Please note that I’ve updated the Picture Gallery with pictures of the finished kitchen and porch and my new hair cut.

I continue to lose hair, but it’s shedding slowly so I still have not shaved it off. With the above numbers I don’t feel so bad anymore about losing my hair. Mouth sores are gone for the time being except one small one in my throat. Muscles are still aching, especially my hips and my nails are starting to hurt, but not all the time. These are all side effects of the drug.

We head to Misquamicut on Saturday for 2 weeks with much to celebrate!

Thank you for all your prayers, support and love! Couldn’t have done this without you! You are my strength!

Love to all,
Bea

CT Scan News

Jun26

I had the CT scan yesterday, June 25th at 1:30 pm. At 5 pm last night Dr. Zhu called me. He said, “The drug is working.” I said, “Oh yeah, did you see some shrinkage?” He said, “Oh yes, ‘dramatic shrinkage”. OMG – He was excited!

Ray and I and our kids and family and friends are very excited and so happy. So it may be worth the pain when I eat and losing my hair afterall!!!! Can’t wait to get all the details. We won’t know anything more until late next week.

Dr. Zhu was lookng at scans as he was talking to me. There are no written reports yet. He is concerned about the mouth sores and throat pain and will be trying to address this issue. This is my off week, which started yesterday, and I just have a small sore inside my lip. Slight discomfort when I swallow. Hoping this improves as the week goes on.

We’re off to New Hampshire for the family reunion!

Love to everyone! Can’t thank you enough for all your prayers, support and love! You are my strength! Prayer is powerful! Thank the God Lord above!

CT Scan Results

Feb23

Got the CT scan results from Dr. Hong on Friday. Bottom line – cancer is stable. Had two nodules in the lungs get a bit smaller and one that got a bit bigger. Large tumor in liver got a bit smaller. There is a lesion on the liver that got a bit larger. At this point we will continue with the same chemo treatment. We will make appointment with Dr. Zhu and see what his opinion is. Dr. Hong said we could continue treatment, change the meds or look at clinical trials at this point. Unless Dr. Zhu convinces us otherwise, we’ll continue treatment as is and see what the results of the CT scan are in another 3 months.

The past few weeks have been cold and snowy. It’s crazy how much snow we’ve gotten. It seems like it’ll never melt. Hopefully we’re at the end of this craziness. I continue to feel well most days. I do get tired and my energy level gets low. I need to plan my days accordingly. If I’ve made plans to go out, I take it easy that day and even have a nap. When I’m feeling real good and have energy I get things done around the house. We are still in construction mode with the renovation of the porch and the kitchen. It’s coming along nicely though. Hopefully we’ll have the finished product in a few weeks. The counter is being installed this week, which also means the kitchen sink will be installed. Yeah! Thankfully, Ray set up the dining room as the temporary kitchen and did a wonderful job to make things much easier. All the new appliances have arrived and are patiently waiting to be installed. The porch is still a staging area for the kitchen construction so I haven’t had the chance to enjoy the pleasures I expect that room to bring. It’ll happen soon.

I continue to believe in the power of prayer and am thankful for everyone that continues to pray for me. I’m so fortunate to have such a wonderful support system. Couldn’t ask for better family and friends. I am blessed. You are all my strength. Love to all.