So after sharing my exciting news about the tumor marker going down another 2,000 points, I ended up in the hospital for 3.5 days being treated for pneumonia.  I think it’s been there for quite some time, even before the inflammation of my lungs from the immunotherapy trial.

Thursday morning (2/9/17) I woke up with a temperature of 101.5. The night before I had chills so bad I couldn’t get warm until I had a blanket, two quilted comforters, and an electric blanket on me. And, I had my fleece housecoat on too. So the temp wasn’t too much of a surprise. I was also coughing up phlegm that wasn’t pretty.

My oncologist has always told me if I have a temp of 100.4 or higher to call them. So Ray called Mass General and they said to take me to the emergency room for a chest X-ray.

So at the start of the 15 inch snowstorm, we headed to Hartford Hospital emergency room. It was 6:45 am. The place was empty! Yeah for us. They got me into a room fairly quickly and then things slowed down.

I was examined by about 10 people! Doctors, residents, nurses, PAs, etc. The doctor did hear something in my left lung that didn’t sound good. So off for a chest X-ray. That didn’t take long at all. They did put me on oxygen and monitors so I was tied to my bed. Every time I needed to go to the bathroom I had to call the nurse to unhook me. I was drinking a lot of water, so that happened a lot.

Around noon they told me I was being admitted as they suspected pneumonia. Hard to confirm by X-ray alone and mentioned I may be sent for a CT scan. Thankfully that never happened.

I got to my room in the Conklin Building on the Harry Gray cancer floor around 1:30. Considering other times spent in the emergency room, that wasn’t too bad. I must say what a beautiful, peaceful floor. All rooms are private with their own bathroom and shower. Flat screen tvs, several chairs, a couch that expands if needed. The bed was actually very comfortable and the ability to adjust it up and down is always fun!

Once in my room I was hooked up to oxygen, heart, etc. monitor and given fluids and antibiotics via IV through my port. At least I could go to the bathroom by myself. Well, I always had to have the IV pole with me, but I’m used to that.

Along with the pneumonia, I was also fighting mouth and lip sores so they continued giving me Tylenol with codiene. They also gave me a saline solution for help with the healing – just swish around inside mouth. This helped a real lot. I also had ‘magic mouthwash’ a few times.  It just numbs it for a while.

My temperature had to come down before they would let me go home and it wasn’t cooperating. Once it did start to cooperate, I ended up with a bout of diarrhea. Oh that was fun! NOT!  Then to make matters worse, they had to test it to make sure it wasn’t a very contagious virus. That took a couple of hours and then they finally gave me Imodium. They only gave me one, so I took one on my own about an hour later. It still continued, so after the allowed four hour wait, I asked for another one and that finally did the trick. I didn’t need that on top of everything else.

Then even though my temperature was down acceptablely, my white blood cell count was low, so they kept me another night. It was good they did because I ended up having some mild chills that day.

Thankfully the white blood count went up Sunday morning. The only thing I’m concerned about are my platelets being lower than they’ve ever been. These are what help our blood clot, so it’s not good to have them low. Hopefully by the time I see Dr. Zhu this Friday they will have gone back up.

So I came home Sunday (2/12/17). I missed the fundraiser dinner for my Aunt Pat’s Town Marshall for East Hartford for the St. Patrick’s Day parade. I was very sad I couldn’t be there. My wonderful friend, Julie Mangiagli, was there and she videoed my aunt’s speech and sent it to me. That was such a thoughtful thing to do and I was elated to get it. It made me feel that I was there for part of it anyhow.

The Hartford Hospital doctor said it was viral pneumonia. He said the antiibiotics can still help with inflammation, which I’m convinced it did. They did not send me home with any additional antibiotics. They pumped quite a lot into me, so I was okay with that.

I’m feeling better. Temp is normal. Coughing is getting less and less. Mouth is getting better. Oxygen levels are acceptable. I don’t have much energy, but I expect that to improve day by day.

Never a dull moment in the life of a cancer patient.

Bile Duct Cancer Messed With the Wrong Woman

Thank you all for your love, support and prayers. You are my strength!

We’re so excited, I couldn’t wait to let everyone know. I went for my 3rd infusion Friday, the 3rd. Bloodwork is done before the infusion to be sure I’m healthy enough and numbers were good. They also tested for CA19-9, the tumor marker (gives you an idea of what is going on with the tumors) and my numbers went down 2000 points. This is phenomenal news!  That’s just two weeks time since last test when it went down 800 points.

We are very excited as this means that not only have tumors probably shrunk but the inflammation is calmed down too. The real story will be when I have a CT scan in three weeks. That is the true picture of what is going on. Is my miracle evolving???  Only God knows.

I am taking the oxygen once in a while as my numbers continue to go up and down. They are good most of the time, but a boost of oxygen helps out and gets the numbers up higher.

The wheezing I’ve had when I try to lay down to go to sleep is pretty much gone. Which is a big relief as it’s pretty annoying when you’re trying to sleep and have all these wheezing noises coming out of your mouth. In addition, I usually have a coughing fit whenever I lay my head down and those have calmed down too.

Unfortunately, the chemo combo includes steroids that interfere with my sleep. Even if I’m feeling reallly tired, I just can’t get to sleep. I have meds for that and they take anywhere from a half hour to two hours to kick in. I’ve had some nights where I wake up after 4 hours and take another pill to get more sleep and that helps.

There is never a dull moment with our Clementine.

So the funniest thing happened a few weeks ago. We are officially bad grandparents.

Ray and I started letting Clemmy answer the house phone because it’s almost always junk phone. She punches the buttons and babbles away and we get a kick out of it. So, this day Clemmy wanted the phone. It was not ringing. Ray gave it to her. We heard the dial tone and next we heard a phone ringing. We assumed she was calling the last caller. Next thing we know we hear ‘911, what’s your emergency?’ Ray grabs the phone from her and says ‘ oh sorry the baby was playing with the phone’ ‘Is this 214 Chester St?’ ‘Yes’ ‘Is this Raymond’ ‘Yes’. The conversation ended. Ray, Jay and I were roaring with laughter. I said, ‘leave it to you Clemmy to call 911’’. We thought that was the end of it, but it wasn’t.

About 5 minutes later, I see someone coming to the front door.  They have what looks like a cop hat on. Ray answers the door and it’s a lady cop. Clemmy is right behind him. Ray opens the door and says ‘my baby called 911, I already told them.’ ‘Yes sir, but I need to do a walk through’. So he lets her in and she walks through the living room, kitchen and dining room with Clemmy trailing behind. At one point Clemmy handed her her toy!!!! The cop thanked us and left. OMG! We were dying. I guess in this day and age they can’t take chances anymore so they have to come out and check that everything is okay.

Although I haven’t been feeling good enough to go out anywhere, I did manage to go to a family lunch at Carmine’s a couple of weeks ago. Susan picked me up. Aunt Wilma, Aunt Pat, Chickie and Dottie were there. We had a good time talking and laughing.  Even had a conversation about Trump. I had their lasagna and it was out of this world. Of course, right after that my mouth sores started–not good to having acidity foods. It was worth it.

Clemmy and teddy bear discussing game strategy for the Patriots!

Game face on Clemmy. GO PATS!

Tom Brady fans ~ GO PATS!

Today we’re getting ready for the Super Bowl and cheering on our Patriots. Ray and I will stay home. Ray’s going to make lasagna and we’re also going to have cheese and nachos. Jay and Heather were going to Deb & Butch’s but I think only Jay is going. Poor Clemmy has a cold and is cutting her molars so she’s a miserable baby right now. Heather is going to stay home with her. I guess Jay will be Ubering.

There is an organization for my cancer, Cholangiocarcinoma Foundation that has a conference in Salt Lake City, Utah every year.  Patients and caregivers are invited along with physicians, nurses, pharmacutical companies, etc.  It was held February 1 through 3 this year.  I had registered Ray and I because I really wanted to go.  We were going to visit Julie and Kenny in Sacramento either before or after the conference.

Unfortunately, we couldn’t go because I just didn’t have the energy to endure a day of travel across the country and probably wouldn’t have been able to make it to much of the conference.  A few weeks before I got an email from one of the organizers asking me to be part of a panel of patients, caregivers and physicians to discuss communicating about bile duct cancer and clinical trials with patients.  I was honored to be asked to be part of this panel and saddened that I wouldn’t be able to participate.  I’m hoping I’ll finally get to the conference next year.  Both of my doctors, Dr. Goyal and Dr. Zhu, were speaking at the conference too.  The good thing is that they video tape everything and make it available to everyone in a month or so.

February is Bile Duct Cancer Month

It’s been almost 3 years since my cancer diagnosis, May 2, 2014.  I thought it was time to kick off another fundraiser for the Cholangiocarcinoma Foundation (CCF).  They do so much for our cancer community, information for patients and caregivers, discussion groups, among other things, and most importantly research for the cure.  Soon I’ll be posting BeaStrong t-shirts and bracelets for a nominal donation.  All proceeds will go to the CCF.  Of course a lot of you have already bought the t-shirts and have the bracelets, so any donation is acceptable.  Please do not feel pressure to donate at all.  We put in a second order for t-shirts 3 years ago and still have several, although some sizes are limited.  I’m trying to put a promotion piece together and will post when it’s done.  I’m going to post on Facebook also.

Thank you all for your continued support, love and prayers.  It is appreciated more than you can imagine.   You are my strength!

First, I want to thank everyone for their prayers, love and support. I really appreciate it and it means the world to me.  You are my strength!

Good news is that my lung inflammation has basically calmed down, gone away. My oxygen levels are back up and I”m no longer on oxygen. Yeah! I didn’t like that, but I knew I needed it.

Hopeful that means the chemo is working. The tumor marker has gone down over 800 points also. This is a good sign also. And that was after one infusion.

I had my second infusion last Friday. All went well. I didn’t sleep well the night before so I was tired. Ray and I were joined by two of my wonderful sisters, Susan and Diane. It was so nice having my sisters there.  Of course, there were plenty of laughs.  Never a dull moment with Diane around!  Everyone else praised Ray for being brave enough to spend the day with three Agnew girls! Lol

I feel much better than I did after the first infusion and I attribute that to the change in my lungs and ability to breath better.  I’m having a little bit of a mouth sore problem.  Nothing as bad as in the past, but a sore inside my lip and roof of my mouth and dry mouth.  I’ve got tools to combat this and they’re helping.

Christmas

Christmas at the George Home

Julie arrived on the 21st in the wee hours of the morning.  I had started with the congestion and cough the day before but I didn’t feel too bad.   I had lunch with my best friends Julie Mangiagli and Nancy Walsh.  We went to Roma’s and had a nice visit.  Later that day Julie and I went shopping.  I was exhausted when that was over.  Friday I was really tired and slept most of the day.  We went to the Beachams that night to have a Christmas celebration with them.  I felt pretty good.

Friday at Beacham’s – Nana and Clemmy

Friday at Beacham’s
Ray, Bea, Jason, Julie

Then Saturday, Christmas Eve, I slept most of the day too.  We went to Sue & Tim’s and had a good time seeing everyone.  Sharon didn’t come.  Everyone else was there.  They were happy to see Clemmy walking all over the place.  Diane and I had a good chat with Gary about miracles and God.  That reminds me of something I’ve got to share with everyone.

When I first started the immunotherapy trial I had a dream one night and someone was handing me a ‘box of prayers’.  That was it.  Didn’t really know what it meant.  The following day when I woke up I had a message in my mind ‘you will have a miracle’.  That’s what got us talking about miracles, etc. with Gary.

I really am not sure about the miracle.  Maybe because they’ve gotten so many prayers for me, I’ll have a miracle.  Still waiting to see what it is.  Maybe I will survive this after all.

Anyway, we left Sue & Tim’s by 9 pm and I was in bed by 9:30.  That is not my typical Christmas Eve, but it was what I needed.  

Clemmy on giraffe rider from Aunt Julie & Uncle Kenny

Ray got a call early from Jason on Christmas morning that Clemmy was ready to come down. They got here around 7:30.  She had a ball.  She actually did get excited over her gifts.  It was the cutest thing.  Can’t wait until next year when she really knows what’s going on.  We all had a good time watching her and opening our own presents as well.

Clemmy with her ‘garden’

We had a wonderful dinner at Diane & Bruce’s as we usually do.  We stayed for a while.  Clemmy had a good time and so did we.  I really felt pretty good that day.

It was the following Tuesday that I found out about the inflammation of my lungs, etc.

Clementine’s 1st Birthday

Clemmy and Nana
Love her birthday outfit!

December 30, 2016 – Clemmy’s first birthday.  That year went by fast.  We went to Deb and Butch’s to celebrate.  Julie, Jay, Heather, Deb, Butch and I had a good time.  Clemmy was the life of the party.  She did a good job on her personal cake and had fun.  She was all dressed up for her party too.  She got some great gifts.  She’s beginning to think this is a normal thing since Christmas was only five days earlier  

New Year’s Eve and New Year’s Day

I still wasn’t feeling that good, but I was managing okay.  I was basically resting most of the day.  Watching tv, playing computer games, coloring.

New Year’s Eve Jay and Heather were going to a party and found out it started later than they thought so they asked us to watch Clemmy.  Of course we did.  She ended up spending the night with us.   She’s such a joy and brings me so much happiness.

Clemmy having fun on New Year’s Eve

Technically didn’t stay up to see the new year come in, but I was awake.  I was sleeping on the couch because of the coughing and ability to sleep propped up better.  Around 2 am I hear Clemmy talking.  At first I thought she was talking in her sleep.  She continued talking for 15 minutes.  Ray ended up getting up and changing her and giving her a bottle and put her right back to bed.  She woke up around 7 am.  The kids came to get her at 10 or 11 and they looked like they needed to go back to bed.

There was a surprise 80th birthday party for Aunt Pat New Year’s Day at the Irish Club.  I’m so glad we went.  It was a wonderful party and she was so surprised.  The food was great and, of course, the company. There was a table of Agnews – Shar & Bill, Jim & Elaine, Ray & I, Hank, Sue & Tim, and Diane & Bruce.  We stayed longer than I expected.  It was hard for me to even walk across the room without having a problem breathing.  Cousin Tim came from Florida with his daughter Alexis.  Beautiful young woman.  Farrell’s were there too and a group from West Haven.  Of course the Manions and the rest of the Aunt Pat’s family and Donna’s family were there.   It was a nice turnout for a wonderful, deserving lady.

A lot has happened since I last updated.  Although we had good news after the first two infusions of the immunotherapy drug, which was the CA19-9 tumor marker going down 1,000 points each time, when I went for the third infusion things had changed.

The week before Christmas I started with a cough and a lot of congestion.  I was coughing up mucus a lot and thought I had bronchitis.  I also had shortness of breath and my oxygen levels were too low to get the third infusion.  They did a chest x-ray and then a chest CT scan and it was discovered that my lungs were inflamed and the tumors in my lungs had grown.  The inflammation was from the immunotherapy drug.  They wanted to hospitalize me that day.  Ray quickly talked them out of that!

Ray purchased an oximeter, this is a little thing that is put on my finger and measures my oxygen level and pulse.  I sent the readings to the APRN every day.  They also recommended I take Robitussin and that was unbelievable in clearing up the congestion.  When that was done, I still had shortness of breath.  It’s obvious when I walk up stairs, walk for an extended length of time and just when I get dressed.  Once I rest, I’m fine.

We saw Dr. Zhu on Jan 3rd and he said the growth was the cancer progressing and not ‘pseudo-progression’ as we had hoped.  Pseudo-progression is a term used in immunotherapy where the tumors give the illusion of growth when they are actually being invaded by your immune system and then disappear.

Two days later we were back in Boston for an eye exam and a CT scan of my abdomen.  That was to finalize the end of the trial.  The next day, Friday, met with Dr. Zhu and he said the liver also had growth of tumors.  Not a good day.  He really wanted me to go on oxygen.  Julie had told me she researched and found that my oxygen level had to be 88 for insurance to approve it.  My reading that day was 91.  So the APRN and I walked around the office until my level got down to 88!!!

After that meeting I was off for my first infusion of Folfox.  A different chemo than when I was first diagnosed.  I will stay on this while Dr. Zhu and his team work to find something else for me.  Right now the goal is to stop the growth, and of course, if there is shrinkage then all the better.

So the infusion was tiring and took a couple of hours.  When that was done a ‘pack’ was hooked up to the tubing from my port and I was sent home with that to have continuous chemo for another 46 hours.  How fun is that???  NOT!

As many of you know I have a hard enough time walking on my own (lol), klutz that I am.  So Friday night, Saturday and Sunday I’m hooked up to the chemo pack.  It’s got a tube hitched to my port and to the pack.  The pack is in a bag, like a small shoulder bag, so I put it on my shoulder when I need to get up for anything.  Of course, that’s when I remember I even have it!  One time I got up and headed to the bathroom, Ray was yelling ‘stop! Stop!’  I did and saw that the blanket I had on my lap was all wrapped up in the tubing.  Oh boy!  I managed to hook the tubing on cabinet handles a few times, but all was fine.

I was tired after the infusion and Saturday.  Sunday I was exhausted.  Couldn’t keep my eyes open.  Heather and Clemmy came to visit Sunday and I couldn’t stay awake for them.  I also got sick that morning.

Monday I woke up and felt great.  I thought okay.  I can do this.  If I’m going to feel this good until the next infusion.  Unfortunately, that was short lived.  Tuesday tired again and sick at 4 am.  Upped the anti-nausea meds on Wednesday and was okay that day, Thursday exhausted and today okay.

The oxygen was delivered Wednesday.  What a humbling and very sad experience that was.  It’s a scary thought that I may need this for now on.  I’m trying to be hopeful that I’ll have shrinkage in the lungs and not need it for long.  It’s supposed to make me feel better and I guess it does, but not that much of a difference because my breathing isn’t really too bad.  I put it on and take it off throughout the day.  I’m not able to sleep with it yet.  I’ve tried a couple of times and it just doesn’t work for me.

Last night I had a strange experience.  I got very antsy.  Only word to explain it.  I couldn’t find a comfortable position to sit or lay down.  I couldn’t read or watch tv or play computer games.  I just felt antsy.  I took an Ativan after about a half hour, but it was still an hour before I felt calmed down.  And the entire episode was finished off with a bout of diarrhea!   God, I needed to sleep!  I ended up sleeping in Ray’s huge recliner and didn’t wake up for 7 hours.  That was a great sleep.  It was so comfortable.  I think I’ll find myself sleeping there again.

So far with this chemo I’ve had fatigue, vomiting, constipation, diarrhea, flushing of my t-zone, insomnia, and maybe that antsy episode is from it too.  The reality is that it could be worse.  So I’m hoping it doesn’t get worse as I continue with these treatments.

I’m going to do a different post about Christmas and Clementine’s first birthday as this one is long enough.

I appreciate your prayers, support and love.  It means the world to me.  Keep it coming.  You are my strength.

Ray and I decided to go with the BGB 317 immunotherapy trial.  This is the trial that Dr. Zhu was somehow able to secure two slots for.  It’s a phase 1b trial.  So, that means a lot of blood work and monitoring in the beginning.  The dose was figured out in the phase 1a part of the trial.

I had my first infusion November 18th.  We left town at 7:30 am to arrive at Mass General for 10 am.  They needed to take several vials of blood first and make sure all my numbers were good.  They were and usually are always good.  Before they started the infusion (putting the medicine in via IV through my port), they gave me Tylenol and Benadryl.  The Benadryl was given through IV and WOW!  I’m sitting there and all of a sudden I feel very lightheaded and dizzy!  It was crazy!  I felt sleepy, but I didn’t really sleep.  After that, I had the infusion and it was without incident.  They monitored me for several hours, taking blood in between.

We finally left around 5 pm and never got home until 7:30 pm.  Long, long day.  Ray and I were both exhausted.  Most of the time since the infusion I felt more tired than usual.  I was sleeping good at night and on occasion taking naps during the day.  I saved my energy for Clemmy time and social events.  Finally, I started feeling less tired yesterday and did some things around the house.  It felt good!

We’ve met with Dr. Zhu two times since the infusion.  After the Friday infusion, had to return the following Tuesday for a follow-up.  I was exhausted that day.  Had a busy weekend with Clemmy and then I didn’t sleep well the night before.

After a wonderful Thanksgiving dinner at Diane & Bruce’s and a quiet weekend, I woke up Sunday morning with a red rash all over my neck, chest, stomach and back.  And, it was itchy!  I knew this could be a side effect from the drug.  It was itchy for a while in the morning and then it seemed to calm down.  Sunday night it began itching again.  It was so bad I couldn’t get to sleep.  It took a couple of hours for it to calm down so I could sleep.  If I had been thinking straight, I would have asked Ray to go get some Benadryl, but I didn’t do that.

First thing Monday I called MGH and they called in a prescription for a steroid creme.  Ray picked that up and some Benadryl.  The good thing is that it wasn’t that bad on Monday.  Ray put some creme on my back and I took the Benadryl before I went to bed and slept fine.

Tuesday it barley itched at all.  We went to Boston for a blood draw and met with Dr. Zhu.  He was concerned about the rash and is making sure it’s okay for me the next infusion, which is scheduled for next Wednesday.  I didn’t put on any creme or take Benadryl Tuesday night.  The rash is pretty much gone and never itched again after Tuesday.  All set for Wednesday’s infusion.

The family reunion in October was great.  It was good to see a lot of family members I hadn’t seen in a  long time and catch up.  We went out after to a pizza place in East Windsor with my cousins, aunts and Jim & Elaine.  Had a good time and we were home by 8.

Thanksgiving was wonderful as it always is at Diane & Bruce’s.  Clementine was the entertainment as she’s been walking for a couple of weeks now!!!  All 28 inches of her!!!!  She is too much!  And, she likes to walk around with at least one thing in her hands, if not two!  She’s 11 months old today.  She’s trying to talk and I expect a full sentence to come out any day now.  She did say ‘Nana’ last week.  That was a wonderful thing.

We took our annual trip to New York City with Aunt Wilma, JR & Penny, Kathleen, Lindsay & Megan, Aunt Pat and Donna, and the Kevin Foran clan.  We had a good time.  Went to Bryant Park and checked out their shops set up for the holidays — too expensive for me!  We went to Rockefeller Center and watched them prepare the Christmas tree to raise it up.  Didn’t see it go up, but it was up by the end of the day.  We went to the Metropolitan Art store and NBC Studios store.  A lot of walking.  I was pooped out after that.  We headed to Emmett O’Lunney’s on 50th Street.  Favorite restaurant and watering hole on trips to New York.  Had a great corned beef sandwich (what else??) and spent the rest of the day visiting with Aunt Wilma and everyone else when they returned from the sites they were checking out.  Times Square is right around the corner from this place.

We headed out to the bus early so we could get sandwiches for the ride home.  That didn’t work as planned as the deli was jam packed and the line wasn’t moving.  Ray got pizza from Ray’s Pizza – it was great!  I wish they delivered to East Hartford!  Lol

As we left the city we saw a bunch of Donald Trump protesters.  Not disrupting anything, just walking in a group with their signs.  Oh yeah, two people didn’t make it the bus when it was time to leave.  They were friends of the couple sitting behind us on the bus.  We ended waiting over 20 minutes for these stupid people to get to the bus.  I just think that’s rude.  If you’re 5 minutes late, that’s okay.  But they were obviously very far from the bus for it to take them that long to get there.

Had a high school class reunion meeting next week.  We’ll be celebrating 45 years next year!!!!  That’s crazy!  It was a good meeting getting caught up with everyone.  Nothing definite yet, but hopefully we’ll be having it at the Mill on the River on the Saturday of Thanksgiving weekend 2017.

Thank you everyone for your continued support, love and prayers.  You are my strength.

Lindsay, Megan, Ray and I

Ray and I having fun in NYC

Aunt Wilma. And I at the Today Show desk!

Ray in the Voice chair

Clementine! Playing with DeDa

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.

I had a CT scan on October 11th at Jefferson XRay in Glastonbury.  A CD of the scans was overnighted to Dr. Farago the next day.  Jefferson XRay told me it would be sent the day of the scan.  As usual, they messed up.  I couldn’t get the copy of the CD and mail it myself because they weren’t able to do it in Glastonbury!  They got a new updated system and have less capabilities.  Great way to run an organization!!!!!

Anyway, the scans showed growth in my lungs and actually a new growth there.  Some minor growth in the left and right lobes of liver.  The main tumor in liver is basically dead!!!  So because of the growth, I’m off the LOXO-101 trial.  That was a quick 2 months.

It’s been just about a week since I went off the drug and no more dizziness, my weight is coming down and the swelling in my ankle is just about gone.  So, those were definitely side effects of the drug.  My voice also seems to be getting better.

Ray and I met with Dr. Goyal and Dr. Zhu this week on Tuesday, October 18th.  Our heads were spinning!  They have offered me the choice of three different immunotherapy drugs.  One is Keytruda, the drug Jimmy Carter took for his brain cancer.  Since this is an approved FDA drug for other cancers, I would have to take it ‘off label’.  MGH is applying to Merck for this.  Hopefully I’ll get approval and Merck will pay for the drug.  I think it’s something like $15,000 per infusion!!!  Another choice is a trial where you take one drug and at some point take another that is an immunotherapy drug.  This trial is for patients with advanced solid tumors.  And, the third choice is one that Dr. Zhu is waiting approval on to run the trial and it’s an immunotherapy drug from China.

We will meet with Dr. Goyal again in two weeks.  If all the information is not in yet, it’ll be three weeks.  We figure once approved for Keytruda we can do that at anytime.  We are deciding between the other two trials for the next step.

The good news is that I’m feeling good.  Just getting over a cold that we all had – Ray, Jay, Heather, Julie and me.  Clemmy has it now.

Deke and Kelly’s wedding was one of the best weddings we’ve been to.  We had a wonderful time.  The food was absolutely delicious, the music was great and the fireworks were just an added bonus to an awesome evening.  It was great sharing the fun with Jay, Heather and Julie.  We missed Kenny not being there.  And, of course, spending time with Mom George and the rest of the New Hampshire relatives.  We stayed in a very nice inn that included a breakfast each morning.  Ray got to golf on an awesome golf course too!

My sister-in-law Janet ran a 5K for cancer in New Hampshire in my honor.  That was so sweet of her!

On Columbus Day Jason, Julie, Clemmy and I went to Wickham Park. We had a great time walking around all the wonderful gardens there.  It is a beautiful park and we’re lucky to have it in town.

Looking forward to the Farrell Family Reunion this coming Sunday.

Clemmy is on the move!!!  She’s been crawling for a few months now and has been standing up and holding on to get from one place to another.  Has stood alone without holding on also.  She’s such a joy!  Can’t explain the happiness she has bought to our lives.  Of course, I’ll add a few pictures of her and some pictures of us from the wedding.

Thank you all for your love, prayers and support.  I couldn’t do this without all of you!  You are my strength.

Of course I couldn’t do any of this without my hero, Ray.  There are no words to describe how wonderful he has been.  He just takes care of everything!  I do what I can when I’m feeling good, but he knows when I’m not and just digs in.  Thank you God for bringing this wonderful, caring, loving man into my life so many years ago.  None of us know what our future will hold and definitely no one expects to get cancer and a devastating diagnosis like I did.  I’m happy to say, it’s been just about 2 and a half years since my diagnosis and being told I had less than a year to live.  I love proving that first doctor wrong!!!!  Along with my family, all of you and my outstanding team of doctors and nurses at MGH,  we’ll beat this.  I’d be happy with a pill that stops any further growth that gives me a great quality of life for many years to come.

Ray and I at the UConn versus Syracuse game.

Julie having fun with Clemmy.

Jay and Clemmy with her Patriots dress on! Go Patriots!

Julie and Clemmy at Wickham Park

At Deke & Kelly’s Wedding

Ray, me, Jay, Heather, Julie and Ray’s sisters Donna and Janet

We’ve had a busy summer so far and it continues to look that way. Thankfully I can participate in most social events!

So, after our two weeks at the beach we returned to Boston on Monday, the 18th for a CT scan and the 19th for review of the scan. I have had additional growth, still very minimal, but enough that I’m off the trial.  I’m trying to enjoy my time off without any meds and have been doing pretty good.

Today I’m having waves of feeling cold inside, it’s kind of like chills, but not. And just an all over shaky feeling. I believe it’s withdrawal from the trial drug. I’m taking it easy and hope this passes before the entire day goes by. After all, there are things I want to do.

I will be starting a new trial sometime in mid to late August. This trial is referred to as LOXO-101. The official name of the trial is: Oral TRK Inhibitor LOXO-101 for Treatment of Advanced Adult Solid Tumors. It is a Phase 1 trial, but is scheduled to be completed in January, 2017. If I have good results from this pill, I can stay on it as long as it works for me even after the trial ends.

This trial is for patients who have an NTRK protein alteration. I have that. Julie found some good news about this trial and drug that it has been working on many patients. That is very promising information. Some hospitals are actually recruiting for the Phase 2 of this trial already, but not Mass General. I believe that the dose has pretty much been established though. I will take one pill in the morning and one pill in the evening.

Ray and I will be heading to Mass General Monday, July 25th for me to have yet another biopsy!!! This is actually for Dr. Goyal and Dr. Zhu to see what other mutations I may have and would work with some of the immunotherapy drugs out there. I’m scheduled for the procedure at 12 noon and have to be there by 11 am. So Ray and I will leave here around 8:30. I cannot have anything to eat or drink past midnight tonight. Please say some extra prayers that the procedure goes smoothly.

The next day, Ray and I will meet with the doctor running the new trial. Her name is Anna Farago. She specializes in this mutation-NTRK. I’ve spoken to her and she seems pleasant and very knowledgeable. Our appointment is at 3:30 pm, so I’ll get a good rest in before we have to get back on the road.

The other good word about this trial is that the side effects are minimal and well tolerated and there is no special diet!! Yeah! I’ve been enjoying my meals the last few days without any mouth irritation!

I have mixed feelings about this trial. After all, it’s my 3rd one! Part of me says, what the heck, let’s give it a try and the other part says, I have a good feeling this drug is going to do some damage. I’ll stick with the more positive feeling.

I’m also very happy to have my hair growing and that I got the okay from my oncologist to have it colored. I feel like myself again! It was a novelty to have white hair (let’s admit it, it was mostly white!UGH) and I enjoyed it for a while, especially when people said I looked like my Mom. But, having some color makes me feel much better.

I thank God everyday for all the positive things that have happened to me with this diagnosis. I thank him for all of you that pray for me and keep me in your thoughts. It is appreciated so much I cannot put it into words. I truly believe your prayers and positive thoughts have helped me tremendously throughout this journey. Thank you all you! You are my strength!

For those of you that don’t participate in Facebook, I’ll attach a few photos from vacation and of course some of Clemmy! She brings me so much joy! Can’t believe she’s almost 7 months!  I feel bad, I don’t even have a picture of the Turkis’s at the beach.

Vacation was good and busy. Did have days to just sit at the beach and enjoy the sunshine. As always we have fun with the Turkis Circus when they arrive for their week. This year Julie’s boyfriend Kenny’s parents and brother came during the first week for a few days–all the way from California! And his brother came from D.C. We had a nice visit with them. The guys got to play some golf and Julie, Gayle, Heather, Clemmy and I got to do some sightseeing and shopping at Watch Hill and a place that was really nice with many plants and flowers and a few shops and a cafe, that I can’t remember the name of! Lol. It was only about 15 minutes away. During the last week Ray, me, Diane, Alisha and Mike went to Newport and had a good time.

Another thing that happened since I last wrote was Mom George’s 90th birthday celebration.  Julie flew home from California in time to attend the party and Jason, Heather and Clemmy drove up for the day to celebrate with Nana George in New Hampshire.  It was a wonderful day and Mom George had a great time with everyone.

I hope to do an update in the next month or so. I’ll try to keep everyone informed about the new trial as I learn things about it.

Love to you all!

Sunset from our deck during week one

Having fun at the cottage in her little pool

Nice view from my lounge chair on a quiet day at the beach

Julie and Kenny enjoying the beach

Sunset over pond at end of Atlantic Avenue

Having fun in her saucer at the cottage

What’d you say Willis???

Having fun with Clemmy wearing her first Misquamicut sweatshirt

At the ‘wave’ in Newport

The Golfers

Macias and George families

Seafood night #2

Ray and Jay

Macias and George ‘kids’