Happy New Year to All!

It’s been about five weeks since the last post. Hap is still in the clinical trial. He had to cut back on the Avastin for a few weeks due to some side effects. Today he and Mary met with Dr. Kemeny, his main oncologist to review last week’s scan. The scan showed mild decrease in three out of the four pelvic tumors. As his doctor says, every little bit counts. No change in the liver, but no change is good. Hap only received temsirolimus and no avastin to allow further healing from his complications. Hap did receive his monthly octreotide injection. He also brought up some concerns with his eyes. His doctor wants Hap to follow up with his eye doctor to make sure he’s not having a new side effect from the treatments. Overall, it’s was a good day!

Picture is with Hap’s Chemo nurse, Stinzi

Hap had not received treatment for the last two weeks, due to elevated toxins in his liver from prior treatments. To add insult to injury, Hap had an abscessed molar act up on Thanksgiving Day, which landed him in the dental office on an emergency basis. THANK YOU Dr. Okeson! Hap was given an antibiotic for a week to fight the infection. Unfortunately, the chemo and treatments over the past 3 years have really done a number on his teeth.

While off the chemo, Hap has maintained his weight and even gained a pound. Not sure if it was his mom's vanilla pudding or his boy's super banana protein shakes, but keep them coming!

Hap’s first appointment at Sloan today was to have the problem tooth re-evaluated by the Sloan dentist. Even though the recommendation by the dentist was to extract not one, but two problem molars; after discussions with Hap’s main Oncologist, the decision was made to postpone the dental work for now and restart the second cycle of treatments. The doctor felt Hap’s liver counts have recovered enough and the priority was to begin treatment today.

Week one of his second 8 week cycle...time to put the game face back on, Hap. It's just another inning...one inning at a time.

Happy Thanksgiving to Everyone!

Even in times of struggles, there are always things to be thankful for.

For the first time in three years, Hap’s tumors in the pelvic area have responded to treatment and have shown some measureable shrinkage. This is big news for the trial that Hap
is currently undergoing. The liver has shown no change; but as his doctor says, “No change is good”.

Unfortunately, Hap needs to skip this week of treatment because the toxicities in the liver are above the protocol levels. Hopefully, this will give his liver a chance to recover.

The news on the pelvic tumors came from last week’s CT scan, which measures tumor size. In two weeks Hap will have another octreoscan to measure the cancer uptake.
Based on the last octreoscan, there was activity in the pancreas; however there is nothing measureable in the pancreas on the CT scan.

Currently, Hap has lost over 25 pounds while in this trial and has been battling high blood pressure, nosebleeds, mouth sores and scalp sores.

Above all this, he continues to move forward and wants to thank everyone for all the support, cards, phone calls and continuous prayers. Hap realizes
he has great support that surrounds him on a daily basis and for that, he is “very grateful”.

Last Monday (10/24), Hap started the second cycle of the clinical trial. Good friend Jane Leach accompanied Hap and Mary. Good thing because Hap had four hours to wait for his chemo session. Concerns with his blood work and urine test held up the process. Haps Lipids were high as well as the proteins in the urine. After the “all clear” (6:30 P.M.!), Hap received 30 min. Of Avaston and 30 min. of Temsirolimus.

Yesterday (10/31) Hap returned to Sloan for his 6th trial treatment with good friend John, after a very rough weekend of mouth and gum soars, headaches and pain. Hap was scheduled for vitals and blood work and then follow up with treatment in the chemo suite, however, due to the condition of the mouth and gum sores and drastic weight loss in one week (10 lbs.) he had to meet with his main Oncologist, Dr. Kemeny. After her review, Dr. Kemeny decided to postpone treatments for this week to allow Hap’s mouth to heal, hence improving eating, hence improve his weight. Needless to say, Hap was VERY happy with her decision! This reprieve will allow Hap’s body to heal in general.

Hap had his third treatment of the clinical trial that he is in. (Phase II Trial of CCI-779 and Bevacizumab)
The trial is a combination of Bevacizumab (Avastin) and a chemotherapy drug, Temsirolimus.
Side effects to this point include headaches, nose bleeds, nausea, weight loss and fatigue.

(even treatments don't keep Hap from his phone)

(but Benadryl does....)

Hap has blood work, weights and blood pressure checked weekly. This past week he lost six more pounds. After two months the treatment will be evaluated by scans to determine any tumor progression or shrinkage. At that time doctors will determine if Hap stays in the trial or discontinues.

Meanwhile Hap and Mary found out that there is a new neuroendocrine center in Nashville, Tennessee at the Vanderbilt campus. They now have the Galium68 scan which was only available in Europe. http://www.vanderbilthealth.com/neuroendocrine/36265
This scan is necessary to determine the level of the cancer uptake. This would be needed in the event that Hap needs to go to Sweden for PRRT (Peptide Radio Receptor Therapy) They have asked Hap’s oncologist to contact the doctor at Vanderbilt and she was completely on board with that.

Hap and Mary are very grateful to family and friends for their continuous prays, help with rides, surprise meals, muffins by the dozens and cards of encouragement.

“Life will always throw you curves, just keeping fouling them off…
the right pitch will come, but when it does, be prepared to run the bases.” ~Rick Maksian

Last week threw Hap a curve ball when he received the results from the octreoscans (nuclear scans that measure the uptake of the cancer).
The cancer is once again active in the liver, pelvic area and now, the pancreas. Hap’s doctor immediately talked about a clinical trial.
The only problem was Hap’s bilirubin count was too high for the trial. As of Friday, Hap’s count came down enough to qualify and he was accepted into the trial…YEAH!

The trial consists of receiving a combination of Bevacizumab and Temsirolimus through IV. Each cycle of treatment is 28 days longs.
http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-125

Here’s the ironic thing (or divine intervention) of the whole trial. Last February, Team Rowan raised $10,000 through Cycle for Survival
for research for rare cancers. About a month ago, Hap and Mary received a call saying their team’s money would be given to Dr. Reidy
at Memorial Sloan Kettering for carcinoid cancer research. Last week when Hap and Mary read the 18 page trial report, they noticed the study doctor on the trial is Dr. Reidy. It’s nice to know fundraising really makes a difference.

Meanwhile, Hap and Mary are researching and considering Peptide Receptor Radionuclide Therapy (PRRT) in Sweden or Germany.
This treatment is not yet available in the US, but has proven to stop tumor growth and shrink carcinoid tumors.
http://prrtinfo.org/


Hap starts the trial this week…so Hap, prepare to run those bases!

Monday, August 15, good friends, Dave and Donna accompanied Hap and Mary to Sloan for two appointments. First appointment was with Hap’s radiation oncologist to go over scan results following his 5 weeks of treatments. The scan reports do not indicate any changes as of yet, but Hap’s doctor said it’s a little early and the affects of the radiation can work for months
to come. She then indicated that there have been some changes in the liver and Hap’s main oncologist would like to talk to him about it.

So onto the next appt…They all met with Hap’s main doctor. The scan reports show that the liver has a few tumors showing some additional growth. (not a lot, but enough to address them) The possibility of another embolization was discussed, but Hap’s doctor is concerned because
the bile ducts in the liver continue to be inflamed and compromised as a result of first embolization. Another issue is that Hap continues to be very itchy as a result of the high bilirubin count in his blood stream. She decided to take Hap’s case to Thursday’s “Tumor Board” to discuss the possibilities with a group of other Sloan doctors.

Thursday afternoon, Hap received a call from his doctor. The Tumor Board decided that Hap should absolutely NOT have an additional embolization
at this time with the bile ducts inflamed and compromised. There was discussion about the possibility of placing stents in the bile ducts and also a new medication that will help the itching.
Before any further decisions are made, Hap’s doctor wants another octreoscan (nuclear) that measures the exact locations and uptake (intensity) of the cancer.