How It All Began

Carol wants me to start with a "background" blog. Most of the following was composed by Carol in hospital waiting rooms and corridors. And I must tell you . . . she is the first person I have seen actually conduct business from the ICU!! I had to chuckle when I heard her say to someone on the phone, "Well, I'm not actually in my office right now . . . ." That's our Carol!

So, here's the history:

Background: Been having some abdominal pain and back aches. Figured that I need to do some stomach exercises for my back, too much time on airplanes, so that’s the back pain! ☺ Went to see our internists for my stomach pain. He set up an upper GI, did that, they said I had “acid reflux”. But the problem is, that after that, the abdominal pain didn’t go away and the back pain was getting worse. So on Feb 15th or so I set up my own appt with a gastroenterologist that I had seen last year for the same stomach problems that mysteriously went away last March.

Dr. Christopher (the gastroenterologist) did an office exam, listened to my symptoms and announced “You do not have acid reflux” --- Then set me up for an x-ray.

Monday, February 16th Dr Christopher I had have a sonogram/CT scan.

Tuesday, February 17th. Morning. Here’s my email to Christine & Frank:
Hi there. I just got a call from Dr. Christopher’s office. He wants to see me at 12:30 today in his office. Yay. Hopefully he as some idea what’s going on from all the tests and the sonogram/CT scan yesterday. Last night at about 3:30 I had one of my worst bouts. Oooooo, it hurt! So, let’s see……I am still thinking kidney stones. It would be an easy fix. That might explain the back pain; but last night it was as though I had a 5,000 pound soccer ball being pressed into my abdomen. Then by 6:30 it was the usual pain in the back that I have been having all along with no abdominal pain, just soreness..so Jake said “let’s just go for a big walk and get your mind off it.” I agreed so off we went. I am not going to CBS today. Just taking it easy until Dr Christopher rendez-vous at 12:30. I’ll keep you posted on what he says!
Xoxo

Tuesday afternoon, February 17th:
Meet with Dr. Christopher at his office where he told me that the x-rays and CT scan show a “large mass on my pancreas and lesions on the liver.” He then sent me immediately to Sibley Hospital for blood tests. Those tests showed elevated CA-19. (I have later learned that lots of folks who don’t have cancer have elevated CA-19, but everyone who has cancer has an elevated CA-19.)

Wednesday, February 18, 2009 – liver biopsy at Sibley Hospital 7:30 am)

Thursday, February 19, 2009 – An email to a bunch of my Bible Study friends.
Hi there! I have tried to include many of you prayer warriors who I know will pass the word on to our other friends. I am hoping for an ARMY of prayer!!

After the tests on Monday, they found the mass on my pancreas and spots on the liver on Tuesday, they got me right in for a liver biopsy Thursday. Had the liver biopsy yesterday at Sibley Hospital, procedure went well, but ended up with some drama (internal bleeding) that landed me in ICU overnight. So I am here in ICU now. Hope to go home soon as the Doctor releases me in a few minutes. Frank is here with me.

The wonderful news is that our good friend Dr Kris Monroe (who is a researcher at the Norris Cancer Research center at USC) jumped right on this and found that "all signs for pancreas care point to a Dr Laheru (la-hay-roo) at Johns Hopkins." We called JH and they said that he could see me on March 27th! ☹ That was pretty distressing. But then Dr. Christopher called and got me a referral and amazing!! ☺ they will see me tomorrow at Johns Hopkins!! (They have an entire BUILDING dedicated just to the pancreas, imagine….)

Sally Brown was here for the biopsy at 6:30 yesterday morning(along with Frank) and Frank, Sally and Peggy Ann Fechnay stayed late into the night. Sally is taking care of setting up all the appointments at Johns Hopkins and all the doctor interfaces. Peggy Ann is with me and taking care of all sorts of stuff. Ah, girlfriends! What a God send. Frank and I are really relying on them and on you for your prayers!

The Doctors here at Sibley Hospital say that Dr. Laheru is the guru to go to. As Dr. Christopher said, “he is the Tip of the Spear” – Peggy Ann googled him and he has authored so many articles, and articles written about him.

I am getting pretty worn out so asked Sally to be my point of contact for 'Carol updates' if you don't mind. I will cc her on this note and she'll keep you posted. Watch for updates from them.

I love your notes and most importantly covet your prayers. God is in control of this whole rigamarole and I sure am glad He is! Please pray that the mass and lesions are benign. And for a miraculous healing! :). In the meantime I have lots of meds to keep the pain down until they get my "plan" in place at JH.

Things are moving fast but I wouldn't want it any other way! Thanks again. Please pray, it would be your very best for me!!

Love,
Carol

Friday, February 20, 2009 (Johns Hopkins today!) Here is the email that Sally send out to our friends.
UPDATE #2
Dear members of the Carol Marshall Fan Club,

Just want to let you know that we had a very productive day at Johns Hopkins. Carol met her doctor . . . and loves him! And her new best friend is EllaMae, the chemo nurse. The warm, talented group at Hopkins took Carol in as one of their own today and we all feel that she is in the best place possible for treatment.

Here's the scoop. Tests to date are still somewhat inconclusive. Hopkins needs a few more tests to make a final diagnosis. A multi-dimensional CT scan was done this afternoon and a liver biopsy should happen on Monday. When results of the biopsy become available next Thursday a decision will be made about treatment.

In the meantime, the doctors are thinking that Carol might be perfect for a clinical trial they are running right now . . . with one slot left! It's been running for 2 years with great success.
So . . . it looks like Carol is heading in the direction of chemotherapy, to start week after next. The doctors have told her that she won't lose her hair, won't be nauseated and can continue with her schedule . . . as long as she scales it back somewhat! Expect to see her at bible study and buzzing around as she always does. Hope and prayers are the drugs of choice right now. So please supply lots and many!!
I will be in touch. God bless you all for the love and prayers you are sending Carol's way.
Sally

Saturday, February 21, 2009 UPDATE #3
Hello all. Here is a note from Carol:

The doctors at JH were amazing!! It's a whole Pancreas Department!! Where some hospitals see 10 a year, they have 300 active cases ongoing!

And did you hear the details of God's amazing gift?? There was ONE Spot left in a clinical trial that is closing in 2 weeks and I got it!

I have (another) liver biopsy next week -- I figure they can just keep biopsying the lesions and basically remove them one biopsy at a time!! :) Then they wait a few days for the pathology report. The following week I hope to start chemo and have the supporting role The Big Battle! (Lead Role goes to the Guy who made me in the first place! -- I do thank you for all your prayers. They are being answered one by one!)

Oh, and another little tidbit, although I may have "flu-like symptoms" from the weekly chemo, I won't lose my hair! :) it's all about the hair with us gals you know! Over and over I am struck by a) how little I have known about cancer treatment and b) what I did know was so out of date or erroneous- brilliant scientists (like Kris) and doctor like Dr Laheru's team have come so far. (Did you know there are over 40 kinds of cancer possible in the pancreas alone?)

I am in awe of these dedicated professionals and in our AWEsome God at the helm.

Love,
Carol



February 22, 2009 Here is an email from Kris (my friend at Norris Cancer Research Center at USC. She has been a God-send…funny but we haven’t had any “quantity time” with Kris and Dave for 7 years…and then the week after the “acid reflux” diagnosis when I was still having pain, she was here in DC for meetings at NIH and she and her husband Dave (a longtime pal of Frank, they were Boy Scout leaders together, our sons are good pals, soccer coaches together, etc) came and spent a weekend with us. Coincidence????? One week later, I get the word from Dr Christopher. I called Kris. She was involved from the beginning as you can see. And this is an email that she sent in response to all of our questions about the chemo, the clinical trials, etc.
Hi Ladies,
Sally has it correct. The clinical trial for which you are being considered is only for patients with a certain cancer profile. If you are a candidate for surgery then you wouldn't meet the requirements of this particular trial. By law (medical ethics), you have to be treated with the best possible treatment for you. In fact, as Barb pointed out to me last night, all oncology clinical trials have to be the add-on drug type. They have to give you the standard treatment that is KNOWN to be the BEST at this current date. Now, 6 months to a year from now, perhaps researchers will discover a new best treatment. That treatment will be approved by the FDA in time and all patients will get the benefit of that treatment. But, in the meantime, scientists at major research institutions continue to investigate new drugs to be given concomitantly with the "standard".

So, they need to determine from your liver biopsy whether you qualify for this particular trial. Depending on what they determine, that will guide your course of treatment. We won't know treatment, definitively, until the results of the biopsy are known.

This particular trial is a dose-finding study for the additional drug FTS. Before they begin, they first need to determine baseline for many biomarkers in your blood and test/evaluate clotting properties of your blood.

On day 1 of the trial, when you go in for chemotherapy, they will first test the dosage of gemcitabine. After they give you your first dose of gemcitabine (standard treatment drug), they will evaluate the pharmacokinetic (study of the relationship between amount of dose administered and the blood level achieved) properties by taking multiple blood samples (a total of 8) from you to ensure that your dose is sufficient to reach the blood levels they desire for maximum effectiveness. [As an aside, on my study, some participants are providing 8 blood samples on one day, so that we can characterize the "acute" effect of GF intake on endogenous estrogen levels, i.e., what happens to blood estrogen levels in one day.] Pharmacokinetics can be determined by many factors, how your body metabolizes drugs, your genetic make-up, whether you experience nutrient/drug interactions, etc.

On day 2, FTS will be given orally (2x per day) and continue for 21 consecutive days.

On day 8, second dose of gemcitabine and morning dose of FTS will be taken. Then the same procedure used on Day 1 (taking 8 blood samples to evaluate pharmacokinetic properties of the combination of drugs) will be employed. (BTW - gemcitabine is given by IV every 7 days and yes - before each infusion - a baseline blood sample is taken for laboratory tests. In addition to measuring the level of gemcitabine in your blood prior to giving you a new dose, the clotting ability of your blood and FTS levels will also be measured.

The latter information I took directly from the Informed Consent (IC). No - I am not that knowledgeable - just read the IC as I was requested to do! :>)

Go Team!

Kris

February 23, 2009
From Carol
I have signed the informed consent and if this cancer is inoperable, I feel so so so blessed to be included as the LAST ONE IN on the clinical trial of what is now know to be a successful drug. Just think, by being in this trial, I won’t have to “miss out” on this latest advance in chemotherapy.

As to my situation….Well, we still don’t know anything more… the only thing they have is the CT scans, X-rays that show the mass/lesions and the elevated blood level. They still don’t have a “good” biopsy.

Tomorrow I go up to Johns Hopkins for an endoscope where they put a scope down my throat with a little camera on it to look around and see what they see.

Another Liver Biopsy scheduled for Thursday. That’s good. They put me under the CT scan, line up the biopsy needle using the CT as a guide, then take out 3 plugs from the lesion. It will be good to get the details on the lesions on the liver and finally find out what is going on. They won’t do a biopsy of the pancreas. I am still boldly praying that God will heal my pancreas and that there is no cancer in there! If there is cancer, my prayer is that they will have the right chemo to zap those cells…or at least keep them from growing. We’ve got a wedding to go to! ☺ God WILL honor your prayers. I know it, I know it. I know it. I have read all of His promises in the Bible. They are true and He is Truth. Thanks for walking this journey with me.

Love,
Carol