Today's Oncologist Visit

Today is November 14, 2016

Ruthie wrote the following summary of our visit today. What a wonderful caring doctor Dr. Paul is.  I was able to frankly talk to her and have her answer my questions.   I am enclosing what Ruthie summarized for our family. Ruthie is a patient of Dr. Paul because Ruthie has CML..chronic myelogenous leukemia.

"I am typing a summary of my notes from today, otherwise, I may forget them:-)  Mom, Dad, & I went to see Dr. Kathleen Paul for Mom's first medical oncology appointment.  It was a very lengthy appointment that was filled with a lot of talking and questions from the doctor.

First, Mom was taken in for lab work.   We then were taken in the examining room to meet with Dr. Paul.  She was thrilled to know that she and Mom shared the same love for classical music.  They talked for quite a few minutes about their music.  Dr. Paul plays the harp:-)  Interestingly enough, I've known her for almost 2 years and never knew this about her:-) It was fun to see them talk together!!!

Next, Dr. Paul asked Mom all about her medical history....family history as well....She asked her to describe to her in detail how all this started.  How she came about finally realizing there was a problem and seeking medical help.

They discussed Mom's appetite and weight loss.  They discussed which foods were most likely going to be better for her to digest...example,  low fat & low protein. She was content in finding out that Mom was taking the over-the-counter enzymes which are from the Health Nut Store.  However, she felt it would be good for Mom to try a prescription strength enzyme supplement..Neither of us knew they had that.  Mom will try the sample bottle Dr. Paul gave to her.  She will see if these RX enzymes work better.  If they do, she should take them.  Mom will shop around for less expensive ones.  She is seeing her dietician this Wednesday at the Cancer Center to discuss her diet . This was a very important discussion for Mom & Dad.  In my opinion, she expressed to Mom that it's going to be trial and error for Mom.  Eat and then figure out which foods are easy to digest and don't give her discomfort.   Better to eat lean meats, easy starches..... bland diet. 

Dr. Paul seemed very pleased that Mom isn't having fever,jaundice, nausea, or diarrhea.   This is positive!  She encouraged her to take a full tablet of her Rx pain medicine Tramadol since she is tolerating her 1/2 tablet fine.  No need for suffering pain:-)

Next was the biopsy discussion.  Mom is scheduled Thursday to have this done @ UVA.  This biopsy of the pancreas will be useful.  It will tell what type of cancer it is, is it slow or fast growing,and  treatment options etc....

Then Dr. Paul discussed Mom's 4 Treatment Options as if she has the adenocarcinoma.

Please note, these are notes I jotted down to the best of my knowledge and understanding.  Mom and Dad may have more to add or take away....haha! I really wanted to record the visit, but didn't have time to get my sister's  tape-recorder so this will do.

1. CLINICAL TRIAL:    Johns Hopkins in Baltimore:  She said they are always revolving with new and different treatments for pancreatic cancer.  She has no idea what this looks like.  It could be chemo IV, it could be chemo Pills.  It's 100% dependent on the trial.  Mom would get a much better opinion in person.  Lines of treatment are based on 1st, 2nd,& 3rd lines of treatment.  Should Mom not choose to move forward with a clinical trial first, once she starts Chemo here, she would not be eligible for 1st line of treatment.  I think Dr. Paul used the term "judgemental" meaning at a clinical trial they want a "virgin" , an untouched patient.

2.  Standard Chemo FOLFIRINOX:    Here in Lynchburg, Mom would have a port inserted for treatment before it started.  An example of how this would look:  Come in on a Monday and have 6 hrs of treatment done in the cancer center.  She would go home with a pump in her port and return  back on Wed.  She would not have treatment for 12 days.  This is INTENSE. This chemo has the best track record of extended life.  There are increased side effects. (neuropathy, loss of taste, some hair loss, nausea, diarrhea, constipation, infection). She would not be able to touch, eat or drink anything cold for 48 hrs or would  feel a shock.  They would give her a WBC (white blood count) boost.  Dr. Paul usually cuts this chemo dose in the beginning so that it's more gentle and most patients do ok with it.

3. GEMAR/ABRAXANE:  This is a step down from the previous and more gentle but she still adjusts the dosing.  It's given 1x for 3 weeks in a row.

4. GEMZAR alone:   Gentler and not as effective in treating the cancer\ -  you don't lose your hair.

The last option is NO TREATMENT- Here Dr. Paul and Mom discussed some hard topics. Hospice of course.  Hospice is wonderful she said. Here are some answers to Mom's questions for her:  Not everyone has pain when they are dying.  They make sure patients are kept as comfortable as possible. When pancreatic cancer patients die , they die from their liver shutting down.  They are yellow and jaundiced. Their appetite goes down because their liver isn't processing.  You become sleepier and sleepier and you pass away in your sleep.  Not from pain.  Does it take long to die? It depends.  Dr. Paul said that this option is just as important as her other options.

The goal in Chemo is to accomplish a response to hold stable or shrink the tumor.  Mom had blood work today that was excellent. She is testing Mom for her tumor marker and will find those out, not sure when.  I'll call her in a few days.  This is helpful with chemo treatments, because sometimes instead of having to have the MRI's done etc., to see if the cancer it shrinking, they can tell by these markers (?) .I think this is what I understood.

I asked her what her prognosis thoughts were without treatment....she asked Mom if she wanted to know this answer.." Mom said of course.... She said around a year.  We also spoke of antidepressants.  She asked Mom if she thought she needed them.  Mom told her much of her emotions is based on her pain.  I don't think right now Mom thinks its necessary.

Dr. Paul was everything I had hoped and prayed she would be for my parents today.   She was thorough, professional, yet down to earth.  When Mom was emotional she came close to her and held her hand.  She is compassionate and spent a lot of time with her.  I couldn't have asked for a better appointment except for her to say she can cure Momma:-)  But she can't, only the Lord can.   I ask that you continue to lift my Mom up in all hthe decisions she has to make.   I'm praying for Peace for her .  I also am praying that Mom will make her decisions NOT based on money or time and not base them on the burden she feels treatment would entail.   She knows if she chooses to do any treatment she will have support and caregivers!!!! Let's cheer her on regardless what she chooses.

Dr. Paul did tell Mom she looks amazing!  She looks healthy to look at her. Even in her physical examination of Mom she couldn't feel anything.  Her swimming and singing have kept her healthy. She said as long as Mom feels like it,she should continue in her normal pre diagnosis activities. She also said Mom's medicare and insurance would and should cover all treatments including the clinical trial.

I hope this has summed it up.

Love,

Ruthie"