Treatment #7

Just a quick update after treatment #7.   Not feeling at all well, but this too shall pass.  Got the pump off today and a liter of fluid.   Took phenergan for nausea and immodium for diarrhea.  Sorry to bore everyone with the "details" but this is the reaction from the chemo.  This could very well be my last chemo treatment, for at least awhile:)
Tumor marker is now down to 8 and that is before this last treatment.
Which brings me to the latest!   We will be travelling to Johns Hopkins Cancer Outpatient Clinic on April 17 and 18th instead of May 2.  Lots of paper work to fill out but will have time in the next few weeks:)
"Hope" is the key word for all of us cancer survivors and  fighters.
Not much more energy to be typing tonight.

A New Day and a New Opportunity

Today consisted of a consultation with the Gastroenterology Associates to determine how they would check out something seen on my CT scan a few weeks ago.  So, on May 17 I will have a flex-sigmoidoscopy at VA Baptist Hospital.  Hopefully nothing serious will show up.
When we got home, I received a call from Johns Hopkins from Dr. Ralph Hruban.   He is professor of oncology and pathology at Johns Hopkins University.  He is director of the Sol Goldman Pancreatic Cancer Research Center!
Believe it or not, I wrote him an email 2 days ago and he actually called me, personally!!!  He asked me lots of questions and was pleased that I was doing so well.   He advised that he would put me in touch with the schedulers to set up a multidisciplinary meeting which they do every Tuesday to advise me of my options.  He also said that he was very impressed with how my tumor has shrunk in such a short time  with the FOLFIRINOX.
I was soon called by the coordinator for this meeting and I am scheduled to be there on Tuesday, May 2, at 7 AM to have another CT scan with the latest equipment which will also check my liver, etc.  After the results are read, they will be discussed by this team of doctors which include oncology, surgery, radiation, immunotherapy, trials, etc.   This meeting will last all the rest of that day.
I could have had the meeting earlier, but I want to make sure I am having no side effects after the 8th treatment which will be on April 17!
I am in awe of this latest development in my cancer treatment and help from this considerate doctor who called me.  I am eager to share this with my oncologist since she is the first one who wanted me to "branch out" for a possible trial of immunotherapy:)

So here are a few verses which inspire me but I am guilty of being distracted so easily sometimes.

Philippians 4:4-9
"Rejoice in the Lord always, I will say it again:  Rejoice!   Let your gentleness be evident to all.  The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition,  with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
"Finally, brothers and sisters,, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things.  Whatever you have learned or received or heard from me, or seen in me - put it into practice.  And the God of peace will be with you."

For the Beauty of the Earth - John Rutter

Trial Closed

What a beautiful day we had today.  I walked and was so thankful for the warmer weather.  Hope we will have many more:)
Today I found out that the trial that my oncologist was hoping I could get  into closed, so, we are exploring another trial which may come by June.   Between now and then, I should be making a trip to Baltimore to Johns Hopkins to register and even talk about another pending immunotherapy trial that also looks promising to my oncologist.
So, life goes on and this week is a "free" week for chemo...I will have the seventh treatment Monday - Wednesday (pump off).  After that I will have another "free" week when we go to the beach (April 8 - 15) with part of our family.  That will be a real treat!  The next treatment will come April 17!
Tomorrow AM I have a consultation with the gastroenterology folks to find out about something that showed up on the CT scan.  That should be "fun"... I am counting on a sigmoidoscopy and not a colonoscopy!

New Horizons

This past week my tumor marker shows down to 12.  I had chemo last Monday and got through the side effects without too much trouble, or at least I am remembering that part with trying to forget anyway:)

My oncologist called me on Thursday and told me that she would suggest that I apply for an appointment at Johns Hopkins for a trial that I seem to fit with what I have been through already.  It is for immunotherapy since my tumor is shrinking so rapidly.  

When she first told me about all my options back in November, she told me I was healthy enough to apply for a trial and she would suggest it.  I decided not to go up there but just do the Chemo here that was the strongest.  I was also told that I would not be eligible to do First Trials if I started chemo.  So, this came as a surprise!

So, now that I am stronger and feeling more "normal" after the side effects wear off, I actually can maybe qualify for another kind of  trial just from what I have been through.  From what I understand, there is really no pancreatic cancer immunotherapy  ready at this time but they give you the same cancer therapy for other cancers plus a vaccine that will help your own body fight the cancer.  My oncologist feels strongly that I should try this and says she would if she were me.  (Of course, I kidded her and said she is only about 42 and I am going on 76)  Just sayin':)

Anyway, within a couple days, Johns Hopkins called me and has sent me the paper work via email files, first with the appointment request form and then the request form to send all my medical history, Xrays, health insurance information, etc to them.  

So, tomorrow I will call the cancer center and talk to them about filling out all this paper work and see where it takes us.

Meanwhile, today is a beautiful, cold day in Lynchburg, VA, and I am going tomorrow, March 13,  to Ruthie's for her 44th birthday to advise her how to make empanadas, her favorite "birthday" treat:)  It takes hours to make them, but they will do all the work❤

Below I have copied and pasted the names of the Lord with special focus on Jehovah Rapha!

• El Shaddai (Lord God Almighty)
• El Elyon (The Most High God)
• Adonai (Lord, Master)
• Yahweh (Lord, Jehovah)
• Jehovah Nissi (The Lord My Banner)
• Jehovah-Raah (The Lord My Shepherd)
• Jehovah Rapha (The Lord That Heals)
• Jehovah Shammah (The Lord Is There)
• Jehovah Tsidkenu (The Lord Our Righteousness)
• Jehovah Mekoddishkem (The Lord Who Sanctifies You)
• El Olam (The Everlasting God)
• Elohim (God)
• Qanna (Jealous)
• Jehovah Jireh (The Lord Will Provide)
• Jehovah Shalom (The Lord Is Peace)
• Jehovah Sabaoth (The Lord of Hosts)

Finally updating my "Blog"

This week end was a special time for visitors from my past.  My childhood high school best friend came to visit with her husband and we had a grand time reminiscing,
I was blessed with 3 really good days of good health and even was able to make a simple dinner for them.   Or course, everyone was shocked that I felt good enough plus did not look particulary "sick" to them.   The interesting thing is that I told them if they would come at the end of this next week, they would see a completely different "sick" person.
I am very thankful that I snap back after going through such torment with diarrhea, nausea, taste changes, weakness, neuropathy in my fingers and toes and you name it.  The taste for my special PH 11 balanced water even tastes terrible to me for about a week.
Anyway, so much for that!   Will be wearing this pump until Wednesday when it comes off and I get a liter of saline Wednesday, a shot of Neulasta and then another liter of saline on Friday.
So, the big news that was "introduced" to me was that my Dr.  Paul suggested that because my Fofirinox is working so well to shrink the tumor, she told me today that there is an  Trial at Johns' Hopkins for pancreatic tumors that are shrinking fast from this particular chemo but I cannot go over 12 treatments or I would not be illegible.   She will be checking into the possibility to find out if I am eligible for the Immune Therapy.  This is quite an new slant as far as I am concerned because I never thought i would even want to go up there but since I am feeling so much better in my physically well being, I am seriously asking her to check into it to see if they would accept me.
I need a lot of prayer and support for something like this which I really don't know much about.   Also, I would like to know about side effects and how long I would have to be away from Lynchburg, etc.
So, meanwhile, I will have to have some kind of sygmoidoscopy to find out about the swelling in the rectum that showed up on the CT scan.
Today was my sixth treatment of Folfirinox!

An old choral response has been going around my head for about a week.   We used to sing it at First Presbyterian in Philadelphia under the direction of Alexander McCurdy, organist choir master.

God be in my head, and in my understanding;

God be in mine eyes, and in my looking;

God be in my mouth, and in my speaking;

God be in my heart, and in my thinking;

God be at mine end, and at my departing.

---

Words: Sarum Primer, 1558