I have been afraid to blog recent events because they have been quite scary for me. I have also been quite fatigued and sleeping a LOT.

So after starting on the TAPUR trial, I was very happy that there were no side effects but the ascites got worse. The doctor said it was too soon for the drugs to work and once they did work, the fluid buildup will decrease. Last Tuesday, I underwent an outpatient procedure called paracenthesis. It was to drain fluid from my abdominal cavity and to give me some relief.

The doctor did an ultrasound to help identify the organs and marked them on my abdomen so that he won’t puncture them when he inserted the needle. He then anesthetized the area where he would insert the long needle with the catheter. He removed the needle but left the catheter in place to drain the fluid.

More than 1.6 liters of fluid was siphoned out. Unfortunately most ascetic fluid reaccumulates rapidly and by the evening of the same day, I was back experiencing the same discomfort. The circumference of my abdomen never decreased but instead it increased from 35″ to almost 39″. My weight increased daily and now stands at 119 lbs even though my ribs stick out more prominently than before.

I am going in for another paracenthesis tomorrow morning.

The first infusion was on October 24. I thought I had posted this update but it was still listed as “draft”. No wonder I had friends and family asking if I got into the trial.

Next infusion will be on Nov 15. It will be once every 3 weeks with the 2 drugs, opdivo and Yervoy.

I have been lucky not to experience any side effects from the drugs. But the ascites got worse. I find it difficult to breathe but taking deep breaths help. The nurse asked if I have regular BM because as the belly grows it could become a problem but I don’t have any problems there. The doctor ordered to have a paracenthesis done. If you remember a few months ago I went to have this done at Stanford but they could not find enough fluid to drain. I hope the procedure will be successful tomorrow. We shall see if they drain enough fluid to reduce the size of my abdomen so it will not be so uncomfortable and painful. I compared my photos to my daughter who just entered her 2nd trimester and I am bigger than she is.

Getting good help from the staff here at California Pacific. I got an actual room with private bathroom even though this is just an outpatient procedure. I got to order food for lunch but they must be running late in the kitchen because they should have delivered an hour ago. The platelet transfusion was co pelted and the red flood transfusion is almost done. That one took the longest. They told me 2 hours. Was here at 8:15 am and it’s now 12:30 pm. Feeling drowsy and a little dizzy. It’s from the Benadryl that they gave me and not from the transfusion. After this is done, we wait 1/2 hour to 45 mins. And then they do the blood draw and hopefully all will be normal and the coordinator can submit them and get me approved for the clinical trial and start treatment.

Sorry for the lapse of updates. Since the Talazoparib clinical trial did not work, we expanded our search to SoCal. We already had a trip planned to visit Chrissy and Thomas to go to Disneyland. We were lucky to get appointments at UC Irvine and City of Hope for the time we were there. UCI signed me up for an immunotherapy clinical trial with Keytruda based on the mutation in one of my genes but it was a long shot. City of Hope did not have any trials open at the time and the specialist that we saw was concerned that my CA19-9 was very high. It was in the 20,000s. He suggested getting it down the quickest way possible which was to undergo chemo therapy again. We returned home and continued with getting appointments and consultations with other oncologists….UCSF, UC Davis, CPMC. In the meantime, my CA19-9 shot up even further from 20,000’s to 40,000 and then 50,000’s. We took comfort that one week it came down to the 40,000’s. I attribute that to the vege shakes and donkey skin that Peter has been making for me.

We had a cruise planned to visit the New England states to see the Fall colors but I didn’t feel comfortable going so we cancelled it. It was lucky we did not go because I got an appointment to see this doctor at California Pacific Medical Center (CPMC) and he recommended I join the TAPUR Clinical Trial. This study has 1-16 study drugs. Dr. Baron matched me to 2 of the drugs specific to my genetic mutation. They have not been proven successful for pancreatic cancer. The names of the drugs are opdivo and yervoy (a.k.a. Nivolumab and Ipilimumab). I had to get a platelet transfusion last week but today the results of CBC is still low. Not just the platelet but also the RBC, HGB and HCT. The coordinator is checking on next steps because I don’t meet the protocol as is and they can’t start the infusion Thursday. Oh dear, what should I eat to boost those counts??????

So now that I have caught you all up to date, let me share some fun stuff. Birthday celebrations and freebies. Free dinners at Hana Japan and Benihana, shared birthday desserts, Auntie Anne Pretzel, Victoria Secret, Melting Pot and so much more. September was a fun month. 🙂

I love getting freebies!!!! 😊 I didn’t eat all the sugary stuff. Maybe just took a little bite. Now I am being REALLY good. Nurse said I should take fish with orange juice (vit C) for better absorption. Must try that. Send me your suggestions.

Monday 8/27:

I was able to join a clinical trial at Stanford on 6/26.  I completed 2 cycles before another CT scan was taken.  The bad news was that the disease had grown.  The tumor is 20% larger than it had been before and the doctor recommended that I be taken off the trial.

Wednesday 8/29:

I met with Dr H and he said I should look for other clinical trials as we are facing diminishing returns with chemotherapy.   If we still chose to try chemo, then we would need the platelets to recover to at least the mid-70’s first.  I also continue to suffer the discomforts of feeling bloated.  Dr H said it was the disease that is causing me to feel bloated.  But as it was giving me such great discomfort, he referred me to a hepatologist which I have yet to see.  I continue to double up on the creon.  My appetite is reduced so AYCE buffets are now wasted on me.  I feel a lot better if I can let the gas out sooooo if I let out gas in your presence, I apologize profusely…  🙂  and you can openly make any exclamation you like and we shall hopefully be able to laugh together.

Friday 8/31:

My wonderful children Chrissy and Jenny, and my husband Peter started calling hospitals in Northern and Southern California to find me clinical trials.  Even my sister in Texas made phone calls to help.  Hence starts the race against time.

 

 

Things are getting to be more complicated. Originally I didn’t want to share this as it is not complimentary but I promised myself that I was going to share this journey with all my family and friends so here it is. My abdomen has grown so large I look like I am pregnant!

My stomach feels bloated. I had an ultrasound yesterday. The report released a few hours later states that there is small to moderate amount of fluid but no pocket large enough to do a paracentesis which is an abdominal tap to drain the fluid. I wanted them to drain and test the fluid to see if there are cancer cells there. Now how will I know if the disease has spread if we can’t extract the fluid? How do I know what is causing my stomach to grow? Is my liver or kidneys or other organs okay? Perhaps they need to take a CT scan now. The plan was to take one at the end of 2 cycles but treatment keeps getting postponed. Can an MRI give us more information than an ultrasound? I wrote to my doctors last night and it’s hard to wait for them to get back to me.

Here’s the update on the progression of the Clinical Trial.

I have had several Doctor appointments over the last 2 weeks. Blood work, usually done on Mondays, showed that my platelets are still not where they should be. I had another platelet transfusion done on Wednesday. This brought my platelet count up to 94 and I was told I could resume the treatment at a lower dosage. 3 pills a day instead of 4.

Then this week’s CBC showed that although my platelets went down to 62, so long as they are above 50 I can continue the treatment. BUT now the neutrophils are under 10,000! So for the THIRD time since I started this clinical trial I was told they have to stop the treatment and wait a week. Dr G ordered Neupojen shots so Peter will give me one every other day starting today. This should bring my counts up enough to start treatment again. He also lowered the dosage from 3 pills to 2.

We also had an appointment with the Pain Clinic last Friday. The pain is at a good level with the current medications that I am taking but the problem is I can’t stay awake. The doctor prescribed Provigil to make me stay awake. We shall see if works.

It is difficult but try your best to not let illness get in the way of spending quality time with friends and family. I am so appreciative of their patience and understanding, accommodating to my special needs. I only hope the 80 plus people in the plane that I held up in Seattle are as understanding. I had such sharp stomach pains just prior to them closing the doors. I HAD to use the restroom just before take off. It was a medical emergency. I can only say that if I had “Hold Up A Plane” on my bucket list, I can check that one off already! 😂 😂

I just came back from a memorable trip to Seattle and Victoria, British Columbia, Canada. It was sad that Jennifer could not get off work but we had some quality time with Chrissy, which is great because she is moving to SoCAL soon and we won’t get to see her as often.

I also got to see my classmate whom I had not met since high school. But it didn’t feel like 40 years had passed. This was my friend with whom I had climbed my first tree in kindergarten. Actually, that was the same feeling felt when meeting up with all my classmates of old.

One advice I would like to share is….Treasure your friends. Treasure your family and shower them with the abundance of love. ❤️❤️❤️❤️❤️

We went up the Space Needle in Seattle. Doesn’t it look like there is just space behind me?

The Space Needle.

An anniversary surprise from my husband whist in Seattle with cooperation from my friend.

The guy who took this picture cut off the Butchart Gardens sign behind us. I just don’t understand what he was thinking….

My failed attempt to copy Chrissy in the narrow “Dragon Alley” of Chinatown, Victoria.

Learnt the art of axe throwing.

Chrissy gave us a very special wedding anniversary treat at Butchart Gardens. She insisted we dined at the fine dine restaurant and I was glad she did because dinner was incredible. She even went to speak to the kitchen staff to ensure everything went as planned. All this after she pushed me around the slopes of Buschart Gardens all afternoon. What a sweetheart!

But Chrissy decided to go home earlier to spend The Fourth with Thomas. I guess I should be happy she came at all especially since she just got married a month ago. But 2 other classmates, 1 from Alberta, Canada and the other from LA made arrangements to join us. So did my tree climbing classmate from Seattle and her husband.

So even though I had some tough days, on my good days I enjoyed the Seattle Needle, tasting my way through Pike’s Market and experiencing “rhe dump” at The Crab Pot, The Tillicum Village Tour.

In Canada, we celebrated Canada Day, and 3 days later The Fourth of July, Buschart Gardens and a lovely anniversary dinner with my daughter and husband, a whale watching tour, my first lighthouse and a new sport Axe Throwing.

That’s a lot to enjoy for one sick person, don’t you think?

On towards Clinical Trial tomorrow.

I was so upset to find out my platelet count came DOWN instead of UP. It was 94. I am now at Redwood City getting a platelet transfusion. After it completes which should be in about an hour, they will wait 15 mins and then do another blood test to ensure it is above 100. Dr. Gruber is making a special appointment for me tomorrow at 8:30 am at Stanford Palo Alto to get me started on the talozaparib drug. He is concerned that I have not had treatment for 5 weeks. My pains have increased and and in a different area of my upper abdomen.

Anyways, reactions to the platelet transfusion may include fever, hives, itching. They will Benadryl if needed.

Just as yesterday was difficult, today was not. It wasn’t easy but it wasn’t bad. I feel I need to let everyone know that life is beautiful and enjoyable even amidst the pain. We had a wonderful relaxing time at our friend’s summer bbq and birthday party. It’s past 1 am and I am getting ready for bed. I could even run up the stairs tonight. Oh, such a beautiful day!