Happy New Year!

The end of December and early January have been very busy for Hap & Mary. Hap has had a few setbacks. On December 30th, he ended up in Sloan Urgent Care Emergency Center with severe pain around the pelvic mass and numbness in his right leg and foot. His CT scan was moved up to this day to attempt to find the cause of his pain. Then a week ago, the same pain returned without the numbness in the leg, and lasted for three long days.

On January 18th, Hap had 3 appointments starting his day at 7:00 A.M. with an MRI of the pelvic area, followed by an appointment with his main Oncologist, his monthly Octreotide injection and finally an appointment with his Interventional Radiologist. At this time, it is uncertain why he has become more symptomatic with the pelvic mass. One of the theories is that it is possibly related to surrounding nerves around the tumor and lymph nodes.

There are no studies to compare this mass to because the mass is a “first seen at Sloan” in this location.

Possible options for future procedures were discussed and are being actively pursued. They include, an alcohol injection to the tumor, cryoablation, a resection of the pelvic tumor and 3 compromised lymph nodes, targeted radiation or treatment in Europe.

The absolute BEST news is the latest round of scans are unchanged with the liver remaining stable with no new growths.

In February, Hap will see a neurologist and a radiation specialist prior to returning to his main Oncologist at Sloan.

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.