We had a UCLA visit today with Dr. Ribas. Dad is negative for BRAF mutation. This means he is not a match for clinical trial drugs. Dr. Ribas suggests treatment discussions continue with Dr. Newman in Santa Barbara.
Now dad will decide whether to take standard chemotherapy treatment with limited results. If so, it will likely be oral Temodar. A 6 week daily dose followed by 2 weeks off. CT imaging will be used every eight weeks to view effectiveness. Temodar would continue until unsuccessful. Success equals tumor shrinkage.
Life timelines discussed.
Dr. Newman opened his schedule and will see dad tomorrow am.
Thursday, September 9, 2010
Thursday, September 2, 2010
Perfect timing
This is a very timely link. After the consultation visit with my dad, Dr. Ribas, dads doctor, was on his way to a national press conference regarding the new promising drugs for melanoma patients. Here is the link to August 25th AP release.
http://www.msnbc.msn.com/id/21134540/vp/38854903#38854903
Fingers crossed for BRAF tissue gene match mutation!
http://www.msnbc.msn.com/id/21134540/vp/38854903#38854903
Fingers crossed for BRAF tissue gene match mutation!
Wednesday, September 1, 2010
Radiation Begins
Last week Jack had an appointment with Dr. Antoni Ribas, MD Director of Cell and Gene Therapy at UCLA. During the meeting, Dr. Ribas ruled out treatments such as Interferon and Interluekin-2, an Immunotherapy treatment as not being effective for Jack’s stage 4 melanoma. His recommendation is to attack the cancer while also building his immune system, and suggest Jack enter into a trial. But, before Jack can be part of the trial, he has to have a particular mutated BRAF gene. Jack will find out if he has such a gene next week. In the meantime, traditional treatments begin.
Jack was eager to start radiation, and last week it began on Thursday. Once each day, Jack will undergo a radiation beam directed at his tumor on the back of his head to stop growth and reduce its size. There will be 15 treatments in all – he’s done 5 to date. He’s experienced some side effects from radiation, but he remains his ornery self ready to fight anything that threatens his fun.
His sense of humor and desire to talk to and be around friends and family have not diminished so don’t hesitate to call or visit (do call first). And prayers, happy thoughts and all around good vibes sent this way are much appreciated.
Next update will be posted after September 9th folow up visit at UCLA with Dr. Ribas when we find out whether Jack is accepted in the trial.
Bruce
Jack was eager to start radiation, and last week it began on Thursday. Once each day, Jack will undergo a radiation beam directed at his tumor on the back of his head to stop growth and reduce its size. There will be 15 treatments in all – he’s done 5 to date. He’s experienced some side effects from radiation, but he remains his ornery self ready to fight anything that threatens his fun.
His sense of humor and desire to talk to and be around friends and family have not diminished so don’t hesitate to call or visit (do call first). And prayers, happy thoughts and all around good vibes sent this way are much appreciated.
Next update will be posted after September 9th folow up visit at UCLA with Dr. Ribas when we find out whether Jack is accepted in the trial.
Bruce
Thursday, August 12, 2010
Santa Barbara Radiation Center
George Cheng, M.D. PhD, Radiation Center Medical Group Santa Barbara (805) 682-7300
August 12, 2010
Dad had a visit with Dr. Cheng to explore the possibility of radiation treatment, specifically to the head tumor site. Dr. Cheng has been in communication with Dr. Newman. Both agreed on treatment plan.
Dr. Cheng is a Harvard and MIT grad who grew up in Missouri. This immediately made a good connection with the family. The visit lasted almost two hours.
Head tumor continues to grow and the last few days started to drain clear fluid. Looks irritated. Dr. concerned for future infection, if not treated. Tumor may be growing through skin.
Dr. Cheng showed us (dad, Deanna and I) the CT and MRI images on his large screen computer. This was our first viewing. He confirmed that all tumors are related to the melanoma disease. The best approach is systemic for full body treatment. This is where UCLA specialist can come into play. UCLA studies of newer medications show promise. The data is not mature enough for FDA approval. Drugs administered in trial format. Radiation therapy can be used for superficial tumor sites to control pain and prevent growth into bone.
Dr. Cheng suggested radiation for the head tumor. Radiation will keep the tumor growth in control and to wean off pain medications. This radiation tx should be well tolerated. He will use a moderate level over three weeks (short course). Visits will take approx 30 minutes. Actual radiation time 5-7 minutes. Possible temporary side effects: localized burning, itching and transient pain. The technicians may need to custom fit a mask to aide precise delivery of radiation. This will be delivered to dad’s tumor on a Monday–Friday schedule for three weeks (15 doses).
Radiation planning appointment scheduled for August 13th. Another CT scan will be taken along with measurements for computerized radiation program. Dr. Cheng will need a few days to make the calculated personalized radiation formula.
We were slightly overwhelmed with all the information. I am happy to report dad is doing amazingly well and strong.
August 12, 2010
Dad had a visit with Dr. Cheng to explore the possibility of radiation treatment, specifically to the head tumor site. Dr. Cheng has been in communication with Dr. Newman. Both agreed on treatment plan.
Dr. Cheng is a Harvard and MIT grad who grew up in Missouri. This immediately made a good connection with the family. The visit lasted almost two hours.
Head tumor continues to grow and the last few days started to drain clear fluid. Looks irritated. Dr. concerned for future infection, if not treated. Tumor may be growing through skin.
Dr. Cheng showed us (dad, Deanna and I) the CT and MRI images on his large screen computer. This was our first viewing. He confirmed that all tumors are related to the melanoma disease. The best approach is systemic for full body treatment. This is where UCLA specialist can come into play. UCLA studies of newer medications show promise. The data is not mature enough for FDA approval. Drugs administered in trial format. Radiation therapy can be used for superficial tumor sites to control pain and prevent growth into bone.
Dr. Cheng suggested radiation for the head tumor. Radiation will keep the tumor growth in control and to wean off pain medications. This radiation tx should be well tolerated. He will use a moderate level over three weeks (short course). Visits will take approx 30 minutes. Actual radiation time 5-7 minutes. Possible temporary side effects: localized burning, itching and transient pain. The technicians may need to custom fit a mask to aide precise delivery of radiation. This will be delivered to dad’s tumor on a Monday–Friday schedule for three weeks (15 doses).
Radiation planning appointment scheduled for August 13th. Another CT scan will be taken along with measurements for computerized radiation program. Dr. Cheng will need a few days to make the calculated personalized radiation formula.
We were slightly overwhelmed with all the information. I am happy to report dad is doing amazingly well and strong.
Tuesday, August 10, 2010
August 3rd Medical Exam Notes
The notes below are from the medical exam from Jack's oncologist in Santa Barbara, and are useful for giving you a starting understanding of the challenges ahead.
Jack's next doctor's appointment is Thursday with a Santa Barbara radiologist to discuss treatment plans.
UCLA visit with melanoma specialist August 25th.
=======================================
August 3, 2010
Dad had a visit with Dr. Newman to hear the finding of recent medical tests related to his metastatic melanoma. Blood LDH Serum test, Nuclear PET Scan, CT guided biopsy of abdomen (kidney area). The reason for the test is to determine the stage of the cancer. The stage will determine a suggested treatment plan.
The visit began by Dr. Newman talking directly to dad (all daughters were present in exam room). He asked dad how he felt and what he had been told by the doctors to date. Dr. Newman is a warm doctor. We all liked his professional and personal manor. Dr. Newman oversees a variety of cancer patients without specializing in anyone type.
Dr. Newman began to fill us in on the current test results. We will need to use these test as a baseline since there are not previous scans, MRI, films, etc. The progression of these specific tests will determine the rate of growth in cancer cells which determines the stage and rate of the disease (how fast it is spreading).
PET scan showed multiple hot (cancer cells) spots. Lungs, abdomen, neck lymph nodes, leg, and head outside of skull. CT guided biopsy of abdomen confirmed the diagnosis of metastatic melanoma stage IV. Topical tumor on head growing rapidly and appears to be eroding the skull bone. If this is the case, we need to stop this progression. Once the tumor gets inside the skull bone is it difficult to treat and will cause its own set of problems. A CT scan of the head will help us see if the tumor has eroded the skull bone. Dr. Newman’s office will schedule the CT as soon as possible in Santa Barbara.
Typical treatment can be radiation and/or chemotherapy. The chemotherapy used in Santa Barbara is only the FDA approved drugs, difficult to tolerate and usually not effective for melanoma. The first and important line of treatment is pain management. Dr. Newman improved upon and simplified dad’s current pain medications. Hydrocodone and time released Oxycontin are the new medications prescribed. These can be increased after time if they lose their effect. Driving is discouraged on these medications.
On exam Dr. Newman found some heart irregularities. Heart murmur and elevated heart rate were present and not believed to be an isolated episode. Dr. Newman will inform Dr. Cummins (primary care doc) of these finding and will suggest an echocardiogram and possible referral to a cardiologist.
Next step: MRI of brain to see if external head tumor has eroded the skull bone.
Dr. Newman is referring dad to a specialist at UCLA medical center. Antoni Ribas, MD and his partner Bartosz Chmielowski, MD are on the medical forefront in metastatic melanoma cases. Over the last few years they have had success with several chemotherapy drugs. These medications are only used in a trial format (unapproved by the FDA). Patients must meet a certain criteria to be enrolled in these trials. There is more than one trial available. Trial drugs are good for patients with a specific mutated gene. This gene is identified from a patient’s cancerous tissue. We can use the tissue collected in dad’s CT guided biopsy from July 20th to see if he is a possible trial candidate. There are other criteria patients must be cleared to qualify. This is why we want clearance on heart findings.
Upon leaving the office Dr. Newman’s assistant, Sandy Aguirre confirmed that she would fax dad’s necessary medical records to UCLA Dr. Ribas the same day. She will have Dr. Ribas’s office contact dad directly with an appointment. Dr. Newman let dad know the scheduled Kauai trip should not be a problem. He recommends future travel plans should include travel insurance.
Dr. Antono Ribas (310) 206-3928 aribas@mednet.ucla.edu http://www.uclahealth.org/
The very good news: MRI of brain is clear and looks ok. This is a huge positive result.
Dr. Ribas is on vacation until August 16, 2010. We are waiting for a consultation to be scheduled soon after August 22nd.
Jack's next doctor's appointment is Thursday with a Santa Barbara radiologist to discuss treatment plans.
UCLA visit with melanoma specialist August 25th.
=======================================
August 3, 2010
Dad had a visit with Dr. Newman to hear the finding of recent medical tests related to his metastatic melanoma. Blood LDH Serum test, Nuclear PET Scan, CT guided biopsy of abdomen (kidney area). The reason for the test is to determine the stage of the cancer. The stage will determine a suggested treatment plan.
The visit began by Dr. Newman talking directly to dad (all daughters were present in exam room). He asked dad how he felt and what he had been told by the doctors to date. Dr. Newman is a warm doctor. We all liked his professional and personal manor. Dr. Newman oversees a variety of cancer patients without specializing in anyone type.
Dr. Newman began to fill us in on the current test results. We will need to use these test as a baseline since there are not previous scans, MRI, films, etc. The progression of these specific tests will determine the rate of growth in cancer cells which determines the stage and rate of the disease (how fast it is spreading).
PET scan showed multiple hot (cancer cells) spots. Lungs, abdomen, neck lymph nodes, leg, and head outside of skull. CT guided biopsy of abdomen confirmed the diagnosis of metastatic melanoma stage IV. Topical tumor on head growing rapidly and appears to be eroding the skull bone. If this is the case, we need to stop this progression. Once the tumor gets inside the skull bone is it difficult to treat and will cause its own set of problems. A CT scan of the head will help us see if the tumor has eroded the skull bone. Dr. Newman’s office will schedule the CT as soon as possible in Santa Barbara.
Typical treatment can be radiation and/or chemotherapy. The chemotherapy used in Santa Barbara is only the FDA approved drugs, difficult to tolerate and usually not effective for melanoma. The first and important line of treatment is pain management. Dr. Newman improved upon and simplified dad’s current pain medications. Hydrocodone and time released Oxycontin are the new medications prescribed. These can be increased after time if they lose their effect. Driving is discouraged on these medications.
On exam Dr. Newman found some heart irregularities. Heart murmur and elevated heart rate were present and not believed to be an isolated episode. Dr. Newman will inform Dr. Cummins (primary care doc) of these finding and will suggest an echocardiogram and possible referral to a cardiologist.
Next step: MRI of brain to see if external head tumor has eroded the skull bone.
Dr. Newman is referring dad to a specialist at UCLA medical center. Antoni Ribas, MD and his partner Bartosz Chmielowski, MD are on the medical forefront in metastatic melanoma cases. Over the last few years they have had success with several chemotherapy drugs. These medications are only used in a trial format (unapproved by the FDA). Patients must meet a certain criteria to be enrolled in these trials. There is more than one trial available. Trial drugs are good for patients with a specific mutated gene. This gene is identified from a patient’s cancerous tissue. We can use the tissue collected in dad’s CT guided biopsy from July 20th to see if he is a possible trial candidate. There are other criteria patients must be cleared to qualify. This is why we want clearance on heart findings.
Upon leaving the office Dr. Newman’s assistant, Sandy Aguirre confirmed that she would fax dad’s necessary medical records to UCLA Dr. Ribas the same day. She will have Dr. Ribas’s office contact dad directly with an appointment. Dr. Newman let dad know the scheduled Kauai trip should not be a problem. He recommends future travel plans should include travel insurance.
Dr. Antono Ribas (310) 206-3928 aribas@mednet.ucla.edu http://www.uclahealth.org/
The very good news: MRI of brain is clear and looks ok. This is a huge positive result.
Dr. Ribas is on vacation until August 16, 2010. We are waiting for a consultation to be scheduled soon after August 22nd.
Welcome to Jack's Blog
To friends and family,
The purpose of Jack's Blog is to keep friends and family up to date on Jack's fight against cancer. The blog will be kept current with Jack's status by his daughters. Use the blog to to stay informed and to offer your support and feedback. There's no set schedule for blog posts, but we are estimating there will be a weekly update.
If you have any comments or feedback on how to improve the blog, then please feel free to submit your ideas.
The purpose of Jack's Blog is to keep friends and family up to date on Jack's fight against cancer. The blog will be kept current with Jack's status by his daughters. Use the blog to to stay informed and to offer your support and feedback. There's no set schedule for blog posts, but we are estimating there will be a weekly update.
If you have any comments or feedback on how to improve the blog, then please feel free to submit your ideas.
Subscribe to:
Comments (Atom)