Tuesday, November 9, 2010
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.
Friday, September 17, 2010
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 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.
Tuesday, June 15, 2010
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!!!!
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!!!!
Sunday, April 18, 2010
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.
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.
Saturday, March 27, 2010
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.
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.
Monday, February 22, 2010
Spring Training and Lent …. 2 good reasons to stay focused!
Not only are the Yankees gearing up for the 2010 season, Hap’s doctors are teaming up to determine the best procedure for battling the pelvic mass and compromised lymph nodes.
A couple of weeks ago, Hap went to see a radiation oncologist to discuss the possibilities of radiation to the pelvic mass and surrounding lymph nodes. One concern would be the closeness of the small intestines and the bladder. With encouragement Hap’s doctor agreed to take Hap’s case to the Tumor Board to discuss options. She also wanted us to follow up with a doctor at Sloan, who specializes in evaluation and treatment of neuromuscular, musculoskeletal and functional complications of cancer, to evaluate the reasons for the pain in the pelvic area.
The Sloan Memorial Tumor Board met a week ago to discuss Hap’s status. Present at the meeting was Hap’s main doctor, his Interventional Radiologist, the Surgeon that saw Hap saw a year ago and his Radiation Oncologist. Hap, Mary and Lisa (sister) attended Hap’s appointment last Monday to discuss the outcome of the board’s recommendations with his main doctor. A clinical trial was discussed, but after close research by his doctor it was determined that she does not feel comfortable with the side effects this trial would produce. At this time, Hap’s condition is considered somewhat stable. This clinic trial drug only has an 18% response rate. His doctor would like to see if Hap becomes symptomatic before his next scheduled scan.
Last Thursday, Hap and Mary saw the doctor recommended to evaluate the cause of his pain in the pelvic area. This doctor described himself as the “sports medicine doctor” for cancer patients. He, along with a neuro-radiologist, determined that the sporadic pain episodes that Hap has been experiencing are most likely caused by the obturator lymph node. This lymph node is surrounded by nerves that are being pressed up against the pelvic bone as the lymph node becomes inflamed. He will leave it up to Hap’s main doctor to decide if they should treat the node in the near future. Meanwhile, he prescribed a prescription to manage the pain during any future “flare-ups”.
Hap’s next scan is March 10 with later follow-up appts with his main doctor and a surgeon.
A Thought for the Day: With national economic worries, the devastation to Haiti, and individual challenges, everyone needs the season of Lent for inward spiritual reflection in our lives to renew hope.
A couple of weeks ago, Hap went to see a radiation oncologist to discuss the possibilities of radiation to the pelvic mass and surrounding lymph nodes. One concern would be the closeness of the small intestines and the bladder. With encouragement Hap’s doctor agreed to take Hap’s case to the Tumor Board to discuss options. She also wanted us to follow up with a doctor at Sloan, who specializes in evaluation and treatment of neuromuscular, musculoskeletal and functional complications of cancer, to evaluate the reasons for the pain in the pelvic area.
The Sloan Memorial Tumor Board met a week ago to discuss Hap’s status. Present at the meeting was Hap’s main doctor, his Interventional Radiologist, the Surgeon that saw Hap saw a year ago and his Radiation Oncologist. Hap, Mary and Lisa (sister) attended Hap’s appointment last Monday to discuss the outcome of the board’s recommendations with his main doctor. A clinical trial was discussed, but after close research by his doctor it was determined that she does not feel comfortable with the side effects this trial would produce. At this time, Hap’s condition is considered somewhat stable. This clinic trial drug only has an 18% response rate. His doctor would like to see if Hap becomes symptomatic before his next scheduled scan.
Last Thursday, Hap and Mary saw the doctor recommended to evaluate the cause of his pain in the pelvic area. This doctor described himself as the “sports medicine doctor” for cancer patients. He, along with a neuro-radiologist, determined that the sporadic pain episodes that Hap has been experiencing are most likely caused by the obturator lymph node. This lymph node is surrounded by nerves that are being pressed up against the pelvic bone as the lymph node becomes inflamed. He will leave it up to Hap’s main doctor to decide if they should treat the node in the near future. Meanwhile, he prescribed a prescription to manage the pain during any future “flare-ups”.
Hap’s next scan is March 10 with later follow-up appts with his main doctor and a surgeon.
A Thought for the Day: With national economic worries, the devastation to Haiti, and individual challenges, everyone needs the season of Lent for inward spiritual reflection in our lives to renew hope.
Wednesday, January 20, 2010
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.
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.
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