Merry Christmas to Everyone!

On Monday, Hap had his monthly blood work and octreotide injection. He has a scan scheduled for January 11 and then back to the city
on the 18th to review the results and future procedures.

Hap, Mary and their boys are really enjoying the down time away from any procedures. This has been a nice reprieve for four months, other than their monthly appts.

Happy Thanksgiving!

Hap and Mary would like to wish everyone a Happy Thanksgiving! This is definitely a time to count our blessings.

On Monday, October 26, Hap and Mary, along with team members Lisa and Nick went to Sloan for a VERY long inning. Hap started with his day with a 2 hour scan that was repeated due to last week’s incomplete scan of the pelvic mass.

Late that afternoon, they attended the appointment with Hap’s main oncologist to discuss his results and to receive his octreotide (sanostatin) injection. The good news is that the liver continues to look stable. There is one tumor in the liver that is not completely embolized: however, it has not changed. There is some disappointment with the pelvic mass as there has not been much change since the embolization in August…although not any change for the worse.

The last appointment for the day was with the Interventional Radiologist. She viewed the recent scans with them and discussed two other possible procedures; ethanol injection with CT scan visual guidance and
Cryoablation that uses cycles of freezing and thawing to kill cancer cells.

Since Hap’s symptoms are minimal at this time and his liver is stable, they have decided to hold off on any decisions until his next scan. At this time they are deciding whether to do the scans in November or wait until January. Either way, it looks like Hap may be able to enjoy the holidays this year without having to recover from any procedures…Yeah!

Wednesday, October 28th marked a year since Hap’s first procedure. Team Member, Nick felt it was important to celebrate Hap’s progress, determination to always move forward and the blessings he has received
and decided they should end their long day with a nice dinner at Fratelli’s.

Latest team member and friend, Doug accompanied Hap on Monday for his third Octreoscan. Hap was injected with a nuclear isotope and returned four hours later for the two hour scan.

Doug and Hap had four hours to enjoy a fall day in the city and grab some lunch. Unfortunate for Hap, the Yankee game started just as he had to go in for his scan. Hap returned the following morning for another two hour scan.

Hap and Mary will be back in the city on Oct. 26th for two appointments; one with his main doctor and one with his radiologist to discuss the scan results and his next step.

A 1-2-3 inning of good news!

Hap’s doctor entered the room with a big smile, saying that the embolized portion of the pelvic mass is looking neucrotic on the scan. There is currently no shrinkage. (…shrinkage would help in possibly resecting this mass if need be) Hap’s doctor will confer with her radiologist to see what further options exist for the pelvic mass. The liver continues to remain stable and is even seeing further shrinkage of tumors, which is really good news. Hap is approaching one year since his first embolization. Keeping the liver stable for a year is truly progress…… a lot to be thankful for!

Hap received his usual blood work and Octreotide injection at this appointment. He is scheduled for another nuclear Ocreoscan in October as well as follow – up visits; one with his main doctor and another with his interventional radiologist to review the scans and discuss the next procedure. The next CT scan is scheduled for November.

Mary was sharing how Hap has really been through a lot in one year, but continues to accept his difficult journey as a way of life. He never passes up an opportunity to spend time and do things with their sons. He gets his strength from all the “support” that surrounds him and the family and friends that travel to his appointments and procedures with he and Mary.

Hap and Mary travelled to Boston over the weekend to attend the National Patient Awareness Seminar –‘09 provided by the Caring for Carcinoid Foundation. The day was filled with speakers consisting of doctors, surgical oncologists, a social worker, a carcinoid survivor who described her staged liver resections, and researchers, all of which were very beneficial. One of the many highlights of the day was meeting the founder and director of the foundation, Nancy Lindholm and listening to her story. Visit http://www.caringforcarcinoid.org/ to learn more.

One thing that stands out from the seminar was the emphasis on a strong support team.
That is something Hap and Mary feel very fortunate to have. It was also a great day to speak with other patients and their advocates.

Hap is scheduled for a scan on Sept. 18 to evaluate the progress from the embolizations and will follow up with his main doctor on Sept. 30.

Thursday was a perfect day for baseball and Team Rowan entered NY ready to play ball. Their star player (doctor) entered the batters box, dressed in her Team Rowan shirt, and said, “Hap, give me a sign. You may want to call in a sub, but not today….lets play ball”

The doctors at Sloan performed an embolization on the Pelvic mass. Hap followed the four hour procedure with intense nausea; however, has not experienced high blood pressure issues at this time. Like the prior embolizations pain management is a must…but, pain is a good sign the procedure is doing its job.

As of Friday evening, Hap was able to switch to pain pills instead of IV. With his determination and no unforeseen complications Hap will be going home today.

The Interventional Radiologist had planned on blocking two veins/arteries leading to the pelvic tumor. The artery that supplies blood to about 40% of the tumor was completely blocked. The doctor was unable to do the other one, as originally planned. (Prior to blocking the arteries liquid is directed through them to see where it goes. On the second one, the liquid stayed at the butt muscle and not the tumor; therefore, could not be blocked.) After multiple scans during the procedure the source of blood to the portions of the tumor could not be located. The doctor is very optimistic and still expects to get good results from the blockage that was completed.

Hap came out of his procedure on Thursday and his first words were….”did we win?” He is scheduled for a scan in about thirty days to measure the progress…at that point he’ll get his answer.

Team Rowan, consisting of Hap, Mary and friends Lisa and Nick, went to Sloan last Monday for three appointments.

Hap’s first appointment was for pre-surgical testing…EKG and blood work.

The second appointment was with Hap’s main doctor and for his treatment injection.

The third appointment was with the interventional radiologist who will be performing his next embolization. This is the same doctor that did the previous procedures.

On August 13th, Hap will have an embolization to the pelvic mass.
Although embolizations are not new to Sloan, one performed in this location will be a first. The last scan provided excellent pictures for the
radiologist and she feels very confident. Please continue to keep Hap in your prayers during another very difficult time.

It’s hard to believe Hap is coming up on a year since his diagnosis.

Happy Birthday!

Happy Birthday Hap!

Mary and the boys gave Hap a weekend of baseball for his birthday. He went with his friend Dave Hontz to Doubleday Baseball Camp for a weekend in July.
They played on a field that was a replica of the “Field of Dreams”. Hap felt like he was back in his old form until the pain of his sore muscles kicked in.

They played five games throughout the weekend. During one game Hap threw to Dave in a 9 inning win. When asked how he kept up his stamina, Hap replied, “ The adrenalin was rushing and I wanted to win so badly, I could taste it.”

“Team Rowan”, as Hap’s radiologist called them, went to Sloan on Monday, June 22, to discuss an embolization on the pelvic mass along with other options. It is obvious that there is no risk-free procedure. Interesting enough, when you embolize in the liver (which Hap had 2X) you are blocking up blood vessels that almost all go to the liver or liver tumors.
However, in other parts of the body the blood vessels may be supplying blood to numerous places or organs. Therefore, embolizing the pelvic mass has risks of blocking blood supply to other sources besides the tumor. To make an attempt to prevent this Hap is scheduled for a special CT scan to provide more information on the blood vessels. At this time Hap’s radiologist is looking at mid-August for the embolization. He has to return to Sloan on June 29th to receive his monthly treatment injection and meet with his main doctor.

“Team Rowan” may vary from appointment to appointment. On this particular day it was Hap, Mary, Bonnie and Lisa. However the “Team” REALLY consists of everyone supporting Hap whether with prayers, cards, researching info., attending appointments, text messaging, or simply listening.

Today Hap was back at Sloan for his monthly octreotide injection, an echo-cardiogram and an appointment with his doctor to review his scans. Of course, he brought extra ears to listen and digest it all…Mary, Ray and friend, Lisa.

The octreoscan(nuclear) and CT scan showed further improvement in the liver tumors. The pelvic mass and compromised lymph nodes show no significant change; which means, they remain stable at this time.

The REALLY good news is that there are no new lesions(tumors). Hap and Mary have requested the scans be sent to a doctor in Sweden this week for further evaluation. At this time, Hap’s doctor at Sloan does not recommend any further treatments while his condition is stable.

Hap and Mary have met so many interesting people at Sloan…from all corners of the world and each with their unique stories. There’s so much to learn from each one and strength to absorb.

Ray, and friend, Nick accompanied Hap into the city this past Wednesday. (Thank goodness for family and friends) Hap had an octreoscan and CT scan with contrast scheduled. Copies of these scans will be sent to the doctor in Sweden to review for possible treatment options. Hap had his nuclear injection in the morning and was told to return @ 4:00P.M.
This gave the guys four hours to walk around the city, taking in many sights and lunch at Time Square. They returned to Sloan for Hap’s one and a half hour octreoscan.
Needless to say, they were backed up and Hap did not get in until 5:30. Following that scan, he was prepped for the bi-monthly CT scan. After another long wait, Ray, Nick and Hap left Sloan at 9:00 P.M.
(Thanks to them for keeping Hap company on what turned out to be a very long day!)

Dad Luna returned to Sloan with Hap the very next morning to complete the second part of Hap’s nuclear scan. After a 2 hour scan, they were back on the FDR heading home.

Hap is due back to Sloan on the 27th for an appt. with his main doctor to go over his scans and to have another echo-cardiogram.

Mary, Brother Ray & friend Lisa accompanied Hap to his appointment at Sloan on Wednesday. Hap received his monthly treatment injection and blood work. Hap’s blood pressure remains a little high and he will follow up with his Cardiologist at Sloan in May. A new medicine was prescribed to combat the itchiness that Hap has been experiencing due to the compromised bile ducts in his liver.

After Hap’s exam and injection, they asked his doctor if she had time to discuss some research involving treatments that are available in Sweden on Neuroendocrine tumors. Without reservation his doctor was open to hear about it. Research has led Hap and Mary to another expert in the carcinoid cancer field, and they felt a strong need to share this with Hap’s doctor at Sloan. Several weeks back, after serious research, our advocate and friend, Lisa, prepared an email to this doctor in Sweden that outlined Hap’s medical history. In just 2 days after Mary sent the email, they received a reply from this doctor in Sweden with his recommendation for further treatment at his facility (especially addressing the pelvic mass). It is important to note that they are extremely pleased and grateful for Hap’s care to date, but feel the need to be constantly pro-active in his treatments. The doctor in Sweden would like to have a current nuclear Octreoscan and have it sent to him for further evaluation. By the information they sent to him, he feels that Hap is an excellent candidate for treatment with PRRT, which means radioactive treatment with 177Lutetium-DOTA-Octreotate.(this treatment is not currently available in the States) Hap’s doctor at Sloan is on board with this collaboration and suggested we also send him a current CT scan so that he can assess the liver. They feel more hopeful with this multidisciplinary approach, which Hap’s doctor is known for.

All the support and prayers from friends and family continue to give Hap, Mary, and their family, the strength and faith to move forward.

Hap had a follow-up appointment today with his doctor at Sloan to review his scans from two weeks ago. The good news is that the liver tumors look more necrotic and a bit smaller. There is no change in the pelvic mass/nodes.( which means they are still stable) However, there is no real change in some dilated bile ducts.

Hap’s blood pressure was elevated again, so his medication was increased. Hap received his monthly treatment injection of octreotide. For the most part, the appointment went very well and we hope that the tumors continue looking necrotic and avoid growing for a very long time.

Hap returned to Sloan last week for his bi-monthly CT scan and a cardiac evaluation with a cardiologist. After the consult with the cardiologist, a Doppler cardio echogram was ordered to view possible damage done by the flushing of the tumors over an extended time. Although the doctor said it would take approximately 3 or 4 days to get results, Hap heard from the doctor on his way home before he got off the GW Bridge. The results were very positive and showed there is no heart damage whatsoever. The results of the CT scan should be in next week. Hap will then see his oncologist on the 30th of March for his scan results, consultation and Octreotide injection.

Hap and Mary met with his doctor at Sloan yesterday. Hap had his usual blood work first and then followed with the doctor visit. His doctor was concerned about his frequent itchiness and slight bloating on the left side of his face. Hap’s blood pressure was slightly elevated,
but he told his doctor it was due to the “city driving”.
She delayed his ocetreotide treatment for two hours until she reviewed his blood work. Bilirubin was good and most levels were OK,
so she then ordered the nurse to administer the ocetreotide injection.

Hap continues to feel well and is grateful for that.
He follows up in March with a full cardiac evaluation and more scans to monitor his progress.

7th Inning Stretch...a Reprieve!

Hap met with his main doctor at Sloan today to review his scan from 2 weeks ago. He had positive news about the liver tumors.
They are responding to the embolizations. The tumors in both sides of the liver look predominantly liquefied; which means, in medical terms, they are becoming necrotic,
thus giving Hap a reprieve. The scan did show that some bile ducts are inflamed due to the procedures. Hap’s blood work came back showing a slight elevation in his bilirubin count.

The pelvic mass has not changed and is currently considered “stable”. At this point Hap’s doctor is choosing not to embolize the pelvic mass because of risks and side effects due to it’s location.

Hap will continue the monthly ocetreotide injections(which he received today) and will follow up in 2 months with another CTscan. Next month Hap will receive a full cardiac evaluation to give a baseline for monitoring
for carcinoid heart disease.

This reprieve may last months or over a year before needing another procedure on the liver.

Let’s go for the homerun …and pray for more than a year.

Today’s appointment exemplified the meaning of “Living with Hope”.

Hap's appointment has been postponed...

The appointment scheduled for January 19th has been rescheduled for January 26th. Be sure to check back for the results of his scan.

Hap had a scan of his liver and pelvic area yesterday at Sloan's facility in Basking Ridge. (much easier trip than going to Manhattan) However, his doctor in NY will read the scan and Hap and Mary will meet with her on Monday, Jan. 19. At this appointment they will discuss his progress (let's stay positive) and what steps to take next.