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

MD Anderson Visit - Day 2

Friday was filled with Diagnostic tests.

I had a Bone scan, CT Scan (Chest/Abdomen/Pelvis), and a chest x-ray.

I was also scheduled for an MRI, but they had me down for Friday - 6/3 so I'm hoping it can be done here in NC.

On Thursday, Dr. Tannir said he would see me Friday to discuss the protocol once they heard from the insurance company.

I didn't hear back on the scheduled time of the appointment, so left voice mail with the scheduler ~10:30 AM.

I didn't hear back, so had to follow emergency scheduling path on the phone menu to get through and was told that Dr. Tannir didn't see patients on Friday, so they had to confirm with him that he wanted to see me. I had to run during the hour I had to drink the barium contract drink before being taken in for the CT scan.

Once I got in to see Dr. Tannir I was told that the insurance company needed to approve the clinical trial and that the approval could take up to 1 month.

Dr. TAnnir feels the cancer is too aggressive to wait that long, so he wanted me to start taking "Votrient". This is his favorite kidney cancer drug and should have some affect on the common kidney cancer and hopefully on the sarcomatoid as well. We will take it for 2 months and then I will return to MD Anderson for repeat tests to see if it is working. If it seems to be working we will continue it, if not, we will start the clinical trial protocol.

In an attempt to get the drug right away, I rushed down to the hospital pharmacy to fill it ( I was worried it would not be carried at my local pharmacy). Unfortunately, I was told the prescription was denied because it was approved for mail order only. I then called the prescription plan to see if I could get an override to fill the prescription. I then returned to get my CT scan. When done, I had a voice mail from them and called back to find that they said the override had to get approved by another review board and would not likely get done before End of business Friday. This means that best case, I will get the drugs on Tuesday.

I know that God is in control, so I trust him that I don't need the drugs until then.!

As of now, MD Anderson has not been able to review any of the scans to verify the diagnosis from Wake.

I will now be pushing for both the drug approval and the Clinical Trial approval from my insurance company.

MD Anderson Visit

I had an appointment today with an oncologist at MD Anderson.

The trial combines 3 drugs. Two are existing chemotherapy drugs but are not approved for use for Kidney cancer. The other one is what normally is used for kidney cancer.

I should be able to be part of the trial as long as my insurance company approves covering the trial. I previously talked with a registered nurse from my insurance company and she said they have to approve clinical trials like this, but MD Anderson is very reputable, so should be approved.

One is a pill taken twice per day, the others are IV taken once a week.

I should be able to continue working but would be required to return to Houston every 8 weeks.

I'm scheduled for several tests tomorrow to verify the Diagnosis and update everything since it has been 6 weeks since the original scans.

Bone Scan

CT Scan

Chest X-ray

They want a head MRI as well, but it got scheduled for next Friday, so they will try to move it up, or see if it can be done back home.

I will be getting another appointment with the oncologist after the scans tomorrow

He was actually talking about starting the protocol on Monday if we are able to get everything completed.

He did say that he didn't feel that surgery to remove the kidney was an option right now, but maybe if the tumor shrinks with treatment we can do that.

Ben's Prayer

Quote from Ben's prayer last night:

"..... please help the doctors at the best cancer hospital in the world to help daddy get better and put an end to this craziness..."

Clinical Trial

Today I got an appointment at MD Anderson Cancer Center for evaluation of entry into a clinical trial for exactly what I am diagnosed with.

http://clinicaltrials.gov/ct2/show/NCT00496587

I will be traveling Wed for a Thursday appointment and will return Saturday afternoon.

This is exciting to me (Praise God!) since:

it feels more like we have a real plan

we saw an online success story similar to my condition.

http://story.rare-cancer.org/sarcomatoid-renal-cell-carcinoma.php

Initially I thought I would have to push out the appointment to next week because the ticket cost was very High (~$2000), but after calling United, they were able to get me a free miles ticket. The only thing is that I couldn't return on Friday night as I wished so I will return on Sat afternoon. (Another Praise!)

(They actually say we need to be prepared to spend up to 7 days for this, but was told that this normally is jut 1 extra day to get test results etc.)

One of the exclusion criteria was no major surgery in the last 28 days. So if Karen had asked them to continue and remove the kidney/gall bladder/colon, I would not be eligible for this clinical trial.

I had sent an email to the oncologist on Saturday with two possible clinical trials I found, he responded that I could pursue either one if I wanted.

This morning, I sent the following questions, and he called me with his answers:

1) Does the combination of drug in either of the clinical trials sound promising?

A) - He is very interested in any clinical trials since he feels that they would not be spending the money on it unless they felt there was a logical reason to try it.

He asked if I was willing to travel for it and which one I would be interested in.

He then called MD Anderson and they called me back to schedule.

2) I keep seeing IL-2 option even used with sarcomatoid. Why is that no longer an option for me?

A) -The IL-2 can still be used, but has no better record with my type than the more traditional solution he was proposing.

3) I may confused, but as I understand it, sarcomatoid is a transition/differentiation/modification of a base type (underlying histology). What did mine start as? How does that affect the treatment choice?

A) - The histology can't be determined from the small nodule they removed. they will need a much larger sample so won't know until the kidney is removed and pathology done.

4) This article http://www.cancerguide.org/rcc_subtypes.html indicates that the transition to sarcomatoid makes it more susceptible to chemo.

It also indicates that sarcomatoids may be treated more like normal sarcoma than like RCC.

"Interestingly though, sarcomatoid RCC can respond to chemotherapy,

and most of the chemo regimens which have worked with sarcomatoid RCC

are primarily used to treat sarcoma."

Is that correct?

A) - It is correct, but it just means that chemo has almost zero results against standard RCC and has slightly better for sarcoma, but what the first two options we were looking at are not actually "chemo" they are "molecular agent" and those have better results against normal RCC, so he believes the odds of these molecular agents would be better than true chemo on the sarcomatoid as well.

I was also told that the urologist surgeon prefered to wait on the surgery hoping the tumor could be shrunk to reduce the risk of the surgery unless my symptomatic pain was too great. So, I would not be doing the surgery prior to the chemo.

Anointed with oil and prayer by the Elders

Today (Sunday) the elders of Westover Church and Pastor Don Miller anointed me with oil and prayed over me and Karen between services. There were many friends there to support and pray as well and we are very grateful.

Oncologist Visit

Today we had an appointment with Dr. Nagala.

They did not biopsy the large mass on the kidney, just the small nodule they found on the abdomen wall.

The pathology of that confirms that it is "Renal Sarcomatoid", so this is the rare aggressive type they first thought.

I have been experiencing pain even before the aborted surgery that we thought was related to my gall bladder, but we are now thinking it is actually from the cancer.

So, the oncologist is now thinking we should go ahead and do the open surgery to remove the kidney and section of my colon so we can avoid additional complications and also allow the chemo to focus on less cancer to hopefully be more affective.

He will be talking to the Urologist/surgeon to decide if the surgery is too risky without at least attempting to shrink the tumor first, then we will make a decision on when to do it. That will determine when I start the Chemo. I may start before, then pause and do the surgery, then resume, or I may have to wait until after surgery to begin Chemo.

The recommended chemo will not keep me from working, but the surgery will require a couple of weeks of recovery.

The 3 options we discussed were:

1) Sutent (Sunitinib) - Pill

2) Torisel (Temsirolimus) - IV

3) Combination of gemcitabinen and doxorubicin.

Dr. Nagala then said he didn't want option 3, so we didn't discuss it much.

He is recomending option 1 since it is the most known, but is comfortable with option 2 if our copay will be too high for the pills.

Visit from Cancer Group

Tonight, the Westover Cancer group visited and prayed over me and shared some great encouragement.

It was a wonderful evening in God's presence.

Cancer Diagnosis

I was having some stomach discomfort etc., for about a month so went to see my doctor.

He thought it was likely Gall Stones, so sent me to get an Ultrasound to be sure.

The Ultrasound not only confirmed I had Gall Stones, but also showed a "mass" on my right kidney. I then had a abdominal CT scan.

I had a follow up visit the next day and was told that the mass was most likely (99%) renal cell carcinoma (Kidney Cancer).

They saw a couple of nodules in my lungs so wanted a chest CT scan as well to check them out.

Unfortunately they felt the scan was consistent with metastasization of the kidney cancer.

on 5/3 I had a CT guided lung biopsy. The results were inconclusive.

For the kidney, they said that when a mass is that big, they are almost always cancer, but even if it is not cancer, it is too big and the kidney needed to come out.

On 5/12, I went in to surgery for removal of both the right kidney and gall bladder.

Unfortunately, they discovered that the mass was laying on my colon and would require removal of a portion of the colon as well. They also found a nodule on the Peritoneum (abdominal) cavity wall. They did a test to determine it was cancer (renal sarcomatoid) This is an aggressive, rare transformation of one of the normal types of renal cancer (we won't know what type it transformed from until full pathology results are in)

Because it was separate from the kidney, this indicates that the cancer has traveled somehow to get there (stage 4) and there is likely other spots that we can't see and won't show on the CT scans.

So, they abandoned the surgery and we will wait for full pathology results to determine the best chemo regimen.

I have an apt with the oncologist on 5/20 to plan our attack. This is very rare, so there is little data on how to attack this, but his current thinking is to use an aggressive regimen since I'm young and healthy to see if we can shrink the tumor, then remove it after we know the chemo is working.

So as odd as this seems to say (and it still seems extremely odd...) , the current diagnosis is that I have a rare aggressive, stage 4, renal sarcomatoid cancer in my abdomen cavity and possibly in my lungs.

Zach's Concert

Zach had his 6th Grade Concert tonight.

20110512 Zach's Concert Video 1
20110512 Zach's Concert Video 2
20110512 Zach's Concert Video 3
20110512 Zach's Concert Video 4
20110512 Zach's Concert Video 5
20110512 Zach's Concert Video 6