Cancer Update

Sorry for missing so much time....

My scans at MD Anderson in Nov were positvie... There was some shrinkage in both the small nodules and large tumer, so the Votrient seemed to be working...

but...

I was admitted to the hospital shortly after the first of the year with pancreatitis. They believe this was due to a side affect of the chemo I was on (Votrient - it has < 1% chance of causing this.) Anyway, they couldn't get a handle on it, but finally put me on a feeding tube and sent me home for extended bowl rest to get the pancreas to settle down and heal. Unfortunately, I couldn't keep up on the pain control or constipation and was readmitted to the hospital. Last week, they did another CT Scan and found that since I've been off Chemo so long treating the pancreatitis, the cancer has spread. It has invaded the pancreas and some other organs, and is on the peritoneum wall. At this point they feel the only thing to do is keep me comfortable and hope I regain enough strength to begin some sort of chemo, but don't think any chemo will do enough to help.

Really, my only hope is God (as it has always really been). So, we are preparing for the worst, but still expecting a miracle!

Good, but not Good enough

Had my scans yesterday and saw Doctor Tannir today.

The large mass seems to have remained static, but did not shrink.

The small nodules in the lungs seem to have grown slightly.

So, Dr. Tannir feels it is not worth the side affects of the red bag chemo, so we will now be continuing the Gemsar and doing Votrient pills instead of the Adriamiacin.

Clinical Trial 2-month check

Today I had my appointment with Dr. Tannir after having all my scans done yesterday.
So many have been praying and believing and we've been standing on God's promises of healing, so I was expecting some good news.
Unfortunately, the Doctor told me that the overall mass of the tumor has grown by 50% and the nodules in the lungs have grown too.
So, I will no longer be on the clinical trial.
He did however have a new plan. He wants me to begin a new regimine continuing the Gemcitabine (Gemzar), but at a new dose and duration. The add Doxorubicin (Adriamycin). Both to be IV treatments every 2 weeks. No more pills (yeah)

This is definately NOT the news I was hoping for, but God is still in control!
I don't know what is ahead, but am still trusting Him!
During the shuttle ride back to the Hotel, I was praying and thinking to myself. I sometime sing hyms to myself too, and was just letting my mind bounce between thanking God, praying, and praising Him. Then the words "God is not through with you yet" came to mind. I am thankful for the peace He provides.
The Doctor seems surprised that I dont' have blood in my urine, that I am able to manage the pain with minimal drugs, and that it isn't blocking my colon. So I praise God that he is spairing me from those additional trials.

We now have the option to do any ongoing treatment at home, but can opt to continue at MD Anderson.

Please continue to pray!

Hurdles

Before we left for MD Anderson, I was told that my blood pressure had to be under control to enter the trial, so it must read 140/80 or below, so they told me to revert to my prescribed dose of Atenonol once a day instead of the every other day I'd been doing. Unfortunately, over the last couple of months, this drug was casing my heart rate to drop and was making me feel poor when I took it.

I called the PA and MD Anderson and she prescribed lisinopril and I began taking that. I also bought a new blood pressure meter and started monitoring. the pressure was doing OK, but seemed to be climbing and was too high on Saturday morning and also Monday before taking my medicine and heading to the Clinic, so I was anxious but doing my best to trust God. When they took me in, the first reading was 146/80 so they switched to the larger cuff (that I need) and got a reading of 131/70. Praise God!

We then found that if there was any cancer found on my brain MRI done at Baptist that I would not have qualified for the trial. MD Anderson said they did receive the disk, but their radiology has a policy of not reading scans from outside, and they said they had not received the report along with the disk. So, we may have made the trip for nothing! They were later able to find it and there was no cancer found in my brain. Praise God yet again!

They were also supposed to have received the tissue samples from Baptist and verified the diagnosis. We were told they had received the samples, but hadn't gotten the pathology confirmed there. So, they had to go by the report from Baptist, so they had someone read the report and felt that they had sufficient detail to confirm the diagnosis of Sarcomatoid.

So, I had passed all the medical hurdles:

Blood test - Good (Doc said mine were better than his)

Urine - Good

Bone Scan - Negative

CT Scan - Showed only the known tumors on the kidney and small nodules in the lungs

Brain MRI - Negative.

I was scheduled to receive the two IV doses (Gemzar/Gemcitabine, Avastin/Bevacizumab) at 4:30 and they gave me a prescription for the Xeloda pill (Capecitabin) to fill at the pharmacy.

Unfortunately, the Pill is a prescription which fall under my prescription plan coverage (CVS Caremark), not my medical plan (United Health Care) that approved the clinical Trial and CVS Caremark denied my prescription.

UHC says they approved the trial for all three drugs, so they "should" pay for the pill as well, unfortunately, they coded it on their approval letter as the IV form of the drug, so MD Anderson pharmacy is concerned that when they are billed for the prescription it will automatically kick out as a prescription and won't be paid. They required us to sign responsibility for the $5700/Mon for the pill.

So, we will now have to pursue two paths, get UHC to provide in writing that they will cover the pill and/or get CVS to approve it even though it is a clinical trial drug not approved for my diagnosis.

I have now started my treatments and will be following the trial plan!

So, even though it was a very stressful day, we accomplished what we came here for.

Now, just need to drive back home with two boys who are very tired of being couped up!

God's Power

It is clear that God is moving and has provided this opportunity to be part of this clinical trial and I thank Him for that. I truly believe that this is part of God's plan to heal me.

After hearing the news of approval, I was thankful. But, I realized I felt relieved to hear the news.

Why should I feel relieved?

Do I think that God needs MD Anderson to cure me?

Isn't it ironic that no matter how much faith we have in God's ability to cure us, it is so easy to feel more comfortable with man's fallible solutions.

I'm Grateful that God is providing MD Anderson and the field trials, but He is more than capable to cure me in any way He sees fit.

Votrient Approved

Today I got a call from CVS specialty pharmacy.

The backup plan - Votrient was approved for 12 Months.

We no longer need it, but still encouraging to hear. They will put it on hold and it can be re-opened in case we need it.

Clinical Trial Approval

Sorry I haven't posted in a while.

We have spent the last week wrestling with our insurance company layers....

But today, we finally got word that UHC has approved covering the clinical Trial.

So, We all will be traveling to Houston this weekend for meeting the doctor and the first treatment.

We (mostly Karen) have been fighting two fronts.

1 - Clinical Trial approval.

For this, MD Anderson was told it could take up to a month to approve. I had previously been told it should only take 48 hours. Turns out this was a separate "Cancer Support Services" group run by OptumHealth Complex Medical Conditions group for United Health Care. They told me to have MD Anderson contact them, but at that time, I didn't understand this was a separate company and not actually United Health Care. So, MD Anderson contacted the wrong group. I was expecting that they would know the correct place to contact and that United Health Care would at least forward them to the correct group. But, no, we had to make the connections ourselves to get anything to happen.

2 - Votrient prescription

The backup plan drug that was prescribed since the trial was not approved quickly was denied by my prescription plan. Of course, we didn't even learn it was actually denied until almost a week later, and then not from CVS caremark, but from the CVS Specialty pharmacy (separate group)... It is amazing how many layers...

This was under appeal after getting the Doc to send a letter of Medical Necessity, but now has been dropped with approval of the trial.

Danaher, Gilbarco's parent company actually contracts a "Patient advocacy" service that was of help after several rounds of getting them to understand the players involved...:

Steve and Karen

MD Anderson

Nurse and PA

United Health Care

OptumHealth - Contract Cancer resource services for UHC

CVS Caremark - prescription plan

CVS specialty pharmacy (separate from Caremark)

Danaher Patient Advocacy

Wake Forest Baptist

Oncologist

Imaging dept

Pathology dept