We're Back!

It's been a long time since the last post.  I guess you could say,"no news is good news".
Hap continues to be in the Phase II trial.  He is approaching his 113th treatment in this trial. Hap was recently informed that this trial will not go to a phase III due to a low response rate (2%) from patients.  Hap will continue on the trial as long as his blood work levels remain acceptable and/or his body tolerates it. 

Last week's scan reports showed no additional tumors and no size increase in existing tumors; which translates as "stability". Greatest Christmas Present Ever!!!! Hap claims to feel the best he has in five years.

Hap and Mary are grateful for your continuous prayers.  They are asking if you will add some people to your list.  This year two of their very dear friends from MSKCC lost the battle; Jeannie Fried and Chris DiMarco. Please keep their families in your prayers.

                                                                 Jeannie and Hap

Thank you to all the friends, family and colleagues who continue to accompany Hap on treatment days. You are a major part of Hap's progress and positive attitude.

                 Merry Christmas to everyone and have a Happy & Healthy 2014!

Happy New Year to All!

Happy New Year to All!


Hap was off treatment for nine weeks after his surgery in September. His November scan showed slight growth. He has since been back on treatment; however, only receiving temsirolimus. Avastin is being held until the surgeon is sure that Hap is 100% healed. Last week's scan showed stability from November's scan. Stability is a great thing!

Hap saw his surgeon on Thursday and although he's making progress, the abscess is still not healed. This may be due to previous radiation in the pelvic area. At this time the plan is to continue weekly treatments of temsirolimus.

Meanwhile, Hap and Mary , along with Team Rowan, are gearing up for Cycle for Survival on March 3. Visit the team at www.cycleforsurvival.org  and search for Team Rowan.


Coming soon is their new foundation website: www.oneinningatatime.com

I Hope this latest blog update finds everyone safe, sound, and warm after Hurricane Sandy. Please keep all the victims of this disaster in your prayers.

It has been months since our last post. Hap was in the hospital in September for fours days fighting an infection that required emergency surgery. He had to cease treatment for six weeks to physically heal from it all. Hap was able to regain strength mentally and physically while being off treatment. He was suppose to resume this past week but did not due to the hurricane . Hap is scheduled to continue with his treatments on Wednesday.

Exciting news in NJ! The full Assembly passed our Bill SJR12 designating November 10th as NET Cancer Awareness Day every year in NJ. Hap and Mary were extremely happy to see their year long work materialize.

To kick off NET Cancer Awareness Day and the "One Inning at a Time" Foundation dedicated to rare cancer research, Hap and Mary are holding a benefit concert with Blessid Union of Souls on
Saturday, November 10th at The Newton Theatre. We hope to see all of you there!



Happy Mid-Summer Everyone and a

Happy Birthday to Hap and his brother Ray!

Hap is going on week 40 for being in the clinical trial and receiving

Avastin and Temsirolimus treatments. Headaches, nose bleeds and

fatigue continue to be the side effects. These past two weeks Hap had a bout with shingles on the torso area...probably stress related.

June and July have been very difficult months for the Luna family and the Rowan family. In June we lost our dear mom unexpectedly after complications following a procedure for her cancer. Then in July Hap's dad passed after battling renal disease for years. It has truly been a challenging time for our families.

Good News to Share!

Hap and Mary have been working hard to bring awareness to neuroendocrine tumor cancer. With the help of Senator Oroho they have been making trips to Trenton for the purpose of passing Bill SJR-12. They gave testimony with Hap's trial doctor, Dr. Reidy, to promote this bill which would make every November 10th a Neuroendocrine Tumor Cancer Awareness Day in the state of NJ. This bill passed unanimously in the health sub committee and the full Senate. We are now waiting for the final step in the Assembly? If it passes there, it goes to the Governor's desk for signing. WooHoo!!!

Also want to share that Team Rowan members and all their supporters raised over $28,000 for the 2012 Cycle for Survival which funds rare cancer research. Team Rowan is really proud and thankful to all their supporters.

After a few years of raising funds for rare cancer research Hap and Mary have created their own foundation named "One Inning at a Time", named appropriately after this very blog. This foundation should be launched next month.

Saving the best for last...The last scans showed reduction in the tumor size of the pelvic tumors. This has been a first since Hap was diagnosed. There was also some reduction on two of the liver tumors. I think he has two new angels in his outfield. Hap's doctor is working hard at getting his treatment at Basking Ridge, which is closer to home; but so far, no luck. Thank God for friends and family who continue to take Hap into the city which is NEVER a quick trip.

Spring Training Begins!

It’s been a while since the last post. Hap is in the 18th week of his “clinical trial”.
He is back on both treatment medications, avastin and temsirolimus.

Some of Hap’s side effects have really slowed him down. (severe hemorrhoids, nose bleeds, headaches and fatigue) However, this week has been better. Fortunately, he was able to participate in the Cycle for Survival with his Mega Team, “Team Rowan” on February 12th.

At Monday’s appointment, Mary asked Hap’s doctor if he could take a break from the treatment to build up some strength and then later go back on them. Unfortunately, that is not an option in this trial. His next evaluation CT scan is scheduled for March 7th with the follow-up appt on the 12th. We are all looking forward to more progress and further treatment decisions being made.

For the first time in three years, Hap had his picture taken with his medical team, the “Core Four”, with Dr. Kemeny “hitting clean up”!


Photo: Hap’s Medical Team; left to right- Nurse Trish, Dr. Kemeny, Hap, Nurse Karen, and Main Nurse Sandra

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.

Hap completed his five weeks of chemo and radiation and would like to thank everyone who transported him in and out of Manhattan. It's because of you....and the stress you took off Hap and Mary, that made it possible for Hap to endure the five weeks.

These two weeks following treatments are when the fatigue and pain max out, but so far Hap is doing rather well. He is scheduled for a scan in August to determine the success of the radiation on the pelvic tumors.

Every day is a new opportunity. You can build on yesterday's success or put its failures behind you and start over again. That's the way life is, with a new game every day, and that's the way baseball is ~

Progress always involves risk. You can't steal second base and keep your foot on first. ~Frederick B. Wilcox

It's been a few innings since my last post. Hap's doctors have decided to treat the pelvic tumors since there have been some changes in symptoms and size. Hap is up to bat for a five week period of chemo and radiation. The goal is to shrink three lymph node tumors and the large pelvic mass. As Yogi Berra once said, "baseball is 90% mental and the other half is physical" I have no doubt Hap will hit a home run.

Mary and Hap are very grateful to all their friends and family that have offered rides into Manhattan. This week has been long commutes due to the rain and inconsistent times. Next week will be 7:40AM appointments, which should be better.

Happy belated New Year!

It’s been a while since the last posting. Hap continues to go for his monthly treatment injections. For the most part, Hap continues to remain stable. Since December, he has had an increase in itching which is directly related to the liver inflamed bile ducts. His liver count levels had increased, but doctor prescribed medication is helping to balance it out.

The liver tumors remain stable. There have been slight changes in the pelvic tumors which are causing Hap on and off discomfort. Hap plans on discussing these changes with his doctors at his February appointment.

Overall, Hap is doing well and plans on participating in the “Cycle for Survival” with “Team Rowan” event on February 13^th in Manhattan as a way of giving back to MSKCC.

Check it out when you get a chance…… www.cycleforsurvival.org

Worldwide NET Cancer Awareness Day

For Hap and so many like him, support Worldwide NET Cancer Awareness Day Wednesday, November 10th . Visit http://netcancerday.org Spread the word and sign the proclamation.

It has been a while since I posted any information on Hap’s progress…….. but, as they say, “no news is good news” Since the June appointment, Hap’s doctor along with a team of doctors recommended a “hold” on any procedures based on his latest scans at that time. Hap was on SUMMER VACATION! This summer Hap hit the “big 50” and enjoyed a great week at LBI with his family. In August, Mary and Hap sent Brenden off to WVU

Hap continued his monthly Octreotide injections. His August scans showed continued stability in the liver and pelvic tumors, as well as the one lung nodule. Although scans showed stability, Hap had more episodes of pelvic pain than prior months. His doctor increased the Celebrex medication to a daily dosage instead of “as needed”.

Wednesday was Hap’s September appointment. The pelvic pain has decreased but Hap has experienced bouts of fatigue and achy joints. Mary asked his doctor if a lymes test could be performed with the usual blood work ups. He will have those results in a week or so. His scans for November have been moved up to October to insure the liver hasn’t changed. For the most, Hap says he is doing great, enjoying watching Preston playing on the Varsity Soccer team for High Point, watching Nolan play Rec. soccer and missing Brenden and hoping he is balancing college life well at WVU.

Hap had his monthly appt. today at Sloan. His main doctor said she took his case to another conference. The one tumor in the pelvic area has shown some growth, but minimally, and one tumor in the liver is showing an increase in activity, but no additional growth. The doctors present at the conference recommended to hold off on a procedure at this time due to possible long term risks. If his symptoms increase (flushing, pain increase,
nerve pain) then a procedure will be discussed further.

Hap received his octreotide injection and off he went to the next appt. with his interventional radiologist. Once again they discussed procedure possibilities when and if the time comes. The good news is that there are more clinical trials and new drugs on the horizon for carcinoid tumor patients……thanks to organizations like the Caring for Carcinoid Foundation this rare type of cancer is getting more attention. Every month that passes by for Hap without a procedure is good news!!!!

Hap had an appointment on Wednesday with his main doctor to receive his monthly treatment injection and to discuss the surgeon’s report.
The surgeon had expressed his concern of one of the pelvic tumors growing into a nerve area. He is concerned that enlargement of this particular
tumor could result in encasement of the right sacral nerve roots; thus compromising the right leg functions and make surgery more complicated or perhaps impossible.

Hap’s main doctor would like to gather more information from two different scans. In May, Hap will have another octreoscan (nuclear) to determine the uptake (activity) in the tumors and another CT scan to determine growth. With the results of both, his doctor can decide if surgery is necessary to prevent future nerve complications.

This past month Hap also experienced a few episodes of “flushing”, which is usually a result from the liver. The only way to explain the flushing is to compare it to “hot flashes”. The scans will also be used to make sure the liver stability hasn’t changed.

Back in 2008, Hap had a dear friend tell him he would be with him each step of this race. Hap now refers to this race as a “marathon”.
Mary said he is a great marathon runner…staying focused, staying strong and trying not to miss a step.

Last week, Hap had 2 appointments at Sloan. On Monday he had his monthly treatment injection and met with his main doctor to discuss his recent scans. His scans continue to look good showing continuous
stability in the liver and pelvic tumors. Mary and Hap asked the doctor if they should pursue another treatment to the pelvic tumors while Hap is strong. His doctor’s response was that every treatment comes with it’s own risks and that unless Hap becomes more symptomatic we should relax and enjoy this “stable time”.

On Thursday, Hap met with the same surgeon that he met with back in September, 2008. He compared Hap’s original scan in 2008 to his most recent. The tumor that is probably causing most of Hap’s discomfort is the obturator lymph node. Although Hap’s scans show that his condition is stable, this tumor has slightly infiltrated into the muscle wall which has a heavily concentrated area of nerves. The surgeon is concerned that if
we do not resect this tumor soon, we may loose the “window of opportunity”. This surgeon plans on discussing this with other doctors at a conference. Hap will follow up with his main doctor in April.