Wow. I can't even begin to describe the emotions for Andy, Jen, I, Mom, Dad, and others who have just heard the news. Dana Farber came through quickly (THANK YOU!). The preliminary results from Wednesday's biopsy are in, and as suspected / expected by DFCI, Andy's cancer has a somatic genetic mutation called EGFR+. Getting this information is HUGE both physically and emotionally.
Andy will begin a targeted therapeutic treatment path using an oral drug called Tarceva tonight. This is a much different approach to fighting cancer (the way of the future) than the treatment path he had been on this spring.
Chemotherapy is the first line treatment for Stage IV cancers. Stage IV, by categorization, have spread beyond the initial site and have metastasized. Chemotherapy is a systemic poison - it travels throughout the body, ideally killing the cancer cells that have spread; the down side is that it also kills good, healthy fast growing cells (like hair, for example) and has some pretty nasty side effects. And, while there are recommended paths, it can be hit or miss. In Andy's case it was miss.
Targeted therapeutics work in a different manner. As indicated by the name, they kill just those cells with those markings. In this case, Tarceva will target cells that have the EGFR+ gene mutation.
This is a great new option for Andy. By no means is his fight over, the way that we are looking at it now is that he has a new weapon in the arsenal that has a better success of fighting his specific type of NSCLC cancer, with less harmful side effects. We
Thank you all again for the help in getting here - it has been a long road already, and we continue to gain strength in our fight
And to those at DFCI who I have added to the blog - thank you. Your dedication to treating patients make you heroes to patients and their families everyday.
Friday, May 21, 2010
Tuesday, May 18, 2010
DFCI Visit
Good evening, a quick note before the next big day...
Team Andy rolled into our Dana Farber visit Thursday after a day of resting with the folks. It was refreshing, invigorating - everyone who works there, from parking to reception to nurses to doctors all smile and take time to make sure the patient and family are ok. Andy met with two doctors for over an hour; they reviewed his case and laid out a plan for establishing the next treatment plan. He gave more blood :) and was checked to make sure that he didn't get a blood clot from the flight (he didn't).
When I finally had the chance to meet Karen, the head nurse who shepherded me and Jen through getting Andy into DFCI, I just about gave her a huge hug in the waiting room. It was awesome to have Andy there, sobering that he needs to be at DFCI but overall exciting to have him treated at a great facility. He is under the care of a DFCI fellow who is studying under the Director of Thoracic Oncology.
One note about DFCI - the Red Sox are huge donors/sponsors, and their footprint is all over the facility. We got a great shot of Andy, Jen and Mom between the 2004 and 2007 World Series pennants... needless to say, all had big smiles. I will add it to this blog entry soon. Dad stayed home, trying to keep up with Nicholas, so we'll get him with Andy and the pennants soon.
Over the weekend several friends and their families visited; it was great to catch up, to have all the kids running all over the Swan homestead and great for Andy to see old friends. Sunday he was laid out from the Saturday BBQ and spent the day resting.
Today we got news that we expected and which leads to tomorrow's event. The T7 tumor that was removed cannot be used for testing, as it is pleomorphic as a result of the targeted radiation delivered in March... so tomorrow Andy heads into Brigham & Woman's (next door to Dana Farber) to have fresh cells biopsied from his liver. This is an outpatient procedure and he will be home resting by evening. I'll head in with Jen and Andy, and then head to work; Dad and Nicholas will make the pickup later in the day when Andy is ready to go.
The cells will be comprehensively tested for 6 somatic genetic mutations; we are hopeful that a treatment plan can be made based on the initial testing by early next week. (Full testing will take up to 3 weeks to have all the tests completed). It's really important that we have complete results after the spending a good amount of time on testing, so getting the fresh cells is important.
Thursday we hope to have Andy into a neurosurgeon for a post surgery check up on his back and to have the surgical staples removed. He'll also be meeting with a nutritionist to help fatten him up :).
That's all for tonight, I'll try to get something out in the next few days on the news.
Team Andy rolled into our Dana Farber visit Thursday after a day of resting with the folks. It was refreshing, invigorating - everyone who works there, from parking to reception to nurses to doctors all smile and take time to make sure the patient and family are ok. Andy met with two doctors for over an hour; they reviewed his case and laid out a plan for establishing the next treatment plan. He gave more blood :) and was checked to make sure that he didn't get a blood clot from the flight (he didn't).
When I finally had the chance to meet Karen, the head nurse who shepherded me and Jen through getting Andy into DFCI, I just about gave her a huge hug in the waiting room. It was awesome to have Andy there, sobering that he needs to be at DFCI but overall exciting to have him treated at a great facility. He is under the care of a DFCI fellow who is studying under the Director of Thoracic Oncology.
One note about DFCI - the Red Sox are huge donors/sponsors, and their footprint is all over the facility. We got a great shot of Andy, Jen and Mom between the 2004 and 2007 World Series pennants... needless to say, all had big smiles. I will add it to this blog entry soon. Dad stayed home, trying to keep up with Nicholas, so we'll get him with Andy and the pennants soon.
Over the weekend several friends and their families visited; it was great to catch up, to have all the kids running all over the Swan homestead and great for Andy to see old friends. Sunday he was laid out from the Saturday BBQ and spent the day resting.
Today we got news that we expected and which leads to tomorrow's event. The T7 tumor that was removed cannot be used for testing, as it is pleomorphic as a result of the targeted radiation delivered in March... so tomorrow Andy heads into Brigham & Woman's (next door to Dana Farber) to have fresh cells biopsied from his liver. This is an outpatient procedure and he will be home resting by evening. I'll head in with Jen and Andy, and then head to work; Dad and Nicholas will make the pickup later in the day when Andy is ready to go.
The cells will be comprehensively tested for 6 somatic genetic mutations; we are hopeful that a treatment plan can be made based on the initial testing by early next week. (Full testing will take up to 3 weeks to have all the tests completed). It's really important that we have complete results after the spending a good amount of time on testing, so getting the fresh cells is important.
Thursday we hope to have Andy into a neurosurgeon for a post surgery check up on his back and to have the surgical staples removed. He'll also be meeting with a nutritionist to help fatten him up :).
That's all for tonight, I'll try to get something out in the next few days on the news.
Wednesday, May 12, 2010
On the East Coast
Hi all,
Another attempt at a quick update. It took a mighty team (Team Andy!) and a lot of determination to make it happen, but after all was said and done, after a bit of adrenaline, Andy is in Boston, resting for his appointment with Dana Farber tomorrow. The team somehow managed to make the journey without losing any of the entourage or luggage, a minor miracle.
Andy spent last week recovering from the spinal surgery at Henry Mayo in Valencia. The rest of us used the time to organize the trip, get flights, line up medications, get medical records, finalize doctors appointments, work with pathology, ensure that we were ready in Boston with accommodations, handle insurance... so it was a busy week for all.
And it all went according to plan... sort of :). Elaine, Andy's best friend's (and Andy's second) mom, and a NICU nurse in Boston, graciously flew to LA on the early bird and was taken by Zac to Valencia. Dawn watched Nicholas while Jen and Mom packed and gathered the final reports and biopsy sample. Andy prepped for the sweet taste of freedom and release from the hospital.
Jen and I had been asking the hospital, "what will Andy need to leave the hospital, what will he need to fly east, what will he need while he is in Boston..." and we had everything lined up, all the paperwork, according to plan. And then at the last minute, just as Andy's getting ready to leave, we learn that late Sunday night the pulmonologist ordered that Andy have oxygen for the flight back. Which doesn't seem like a big deal, except that the unit used for dispensing oxygen on a plane is somewhat specialized, and as of 245 PM PST on Monday, they couldn't locate one in all of the greater LA area. And... they aren't going to release Andy from the hospital without it.
I tracked down the ladies around 250 PM PST... Mom and Elaine, sprung into action; I had barely told them what was going on before I heard Mom say to Elaine, lets go, followed by squealing wheels. While Jen finished off loose ends at home, Elaine went to the hospital and assumed control of the situation, and made preparations to check Andy out of the hospital and into her care. Mom located a medical supplier in San Diego, and I called Dan, who dropped all and rushed to the San Diego office to get the oxygen canister minutes before they closed at 5 PM PST. Mom and Jen then hopped into a car, headed south, and Dorian called in as "an eye in the sky" from Cincinnati to guide Mom and Jen to Dan to make the pickup while Elaine took care of and readied Andy for the Tuesday flight. The car service arrived after a restless sleepless night for all and whisked Andy, Jen, Nicholas, Mom and Elaine to LAX, they cleared security and flew back with no issues.
Thank you all who helped us on the exodus of crazy Monday - to Zac for picking up Elaine, to Elaine for being a guardian angel taking care of Andy and calming all of our frayed nerves, to Dan for rushing off at a moment's notice and getting the oxygen, to Dorian for acting as a remote air traffic controller, to Dawn for watching Nicholas, to Ann for helping get the hospital bed and room ready for Andy in Boston, to the TSA for calling me back to address questions about flying, to Henry Mayo Pathology for working tightly with me, DFCI, the neurosurgeon to ensure that the biopsied spinal tumor, to DFCI thoracic oncology and pathology and finance for getting everything lined up for the appointments/
So, for now we head into tomorrow, one step at a time, hopeful for a new, winning treatment path and ready to introduce new members of the LC medical community to Team Andy. We're not sure what it will bring but know that we are surrounded by amazing friends and family, an incredible support network. We have hope and a chance to be treated by some of the best in the world.
Good night all.
Another attempt at a quick update. It took a mighty team (Team Andy!) and a lot of determination to make it happen, but after all was said and done, after a bit of adrenaline, Andy is in Boston, resting for his appointment with Dana Farber tomorrow. The team somehow managed to make the journey without losing any of the entourage or luggage, a minor miracle.
Andy spent last week recovering from the spinal surgery at Henry Mayo in Valencia. The rest of us used the time to organize the trip, get flights, line up medications, get medical records, finalize doctors appointments, work with pathology, ensure that we were ready in Boston with accommodations, handle insurance... so it was a busy week for all.
And it all went according to plan... sort of :). Elaine, Andy's best friend's (and Andy's second) mom, and a NICU nurse in Boston, graciously flew to LA on the early bird and was taken by Zac to Valencia. Dawn watched Nicholas while Jen and Mom packed and gathered the final reports and biopsy sample. Andy prepped for the sweet taste of freedom and release from the hospital.
Jen and I had been asking the hospital, "what will Andy need to leave the hospital, what will he need to fly east, what will he need while he is in Boston..." and we had everything lined up, all the paperwork, according to plan. And then at the last minute, just as Andy's getting ready to leave, we learn that late Sunday night the pulmonologist ordered that Andy have oxygen for the flight back. Which doesn't seem like a big deal, except that the unit used for dispensing oxygen on a plane is somewhat specialized, and as of 245 PM PST on Monday, they couldn't locate one in all of the greater LA area. And... they aren't going to release Andy from the hospital without it.
I tracked down the ladies around 250 PM PST... Mom and Elaine, sprung into action; I had barely told them what was going on before I heard Mom say to Elaine, lets go, followed by squealing wheels. While Jen finished off loose ends at home, Elaine went to the hospital and assumed control of the situation, and made preparations to check Andy out of the hospital and into her care. Mom located a medical supplier in San Diego, and I called Dan, who dropped all and rushed to the San Diego office to get the oxygen canister minutes before they closed at 5 PM PST. Mom and Jen then hopped into a car, headed south, and Dorian called in as "an eye in the sky" from Cincinnati to guide Mom and Jen to Dan to make the pickup while Elaine took care of and readied Andy for the Tuesday flight. The car service arrived after a restless sleepless night for all and whisked Andy, Jen, Nicholas, Mom and Elaine to LAX, they cleared security and flew back with no issues.
Thank you all who helped us on the exodus of crazy Monday - to Zac for picking up Elaine, to Elaine for being a guardian angel taking care of Andy and calming all of our frayed nerves, to Dan for rushing off at a moment's notice and getting the oxygen, to Dorian for acting as a remote air traffic controller, to Dawn for watching Nicholas, to Ann for helping get the hospital bed and room ready for Andy in Boston, to the TSA for calling me back to address questions about flying, to Henry Mayo Pathology for working tightly with me, DFCI, the neurosurgeon to ensure that the biopsied spinal tumor, to DFCI thoracic oncology and pathology and finance for getting everything lined up for the appointments/
So, for now we head into tomorrow, one step at a time, hopeful for a new, winning treatment path and ready to introduce new members of the LC medical community to Team Andy. We're not sure what it will bring but know that we are surrounded by amazing friends and family, an incredible support network. We have hope and a chance to be treated by some of the best in the world.
Good night all.
Wednesday, May 5, 2010
Successful Surgery
Tonight let's have Dessert before Dinner and cut right to the happy ending: the spinal surgery went well yesterday, Andy's already out of the ICU and the tumor is on its way to Dana Farber (DFCI) for specialized testing.
Last week we brought Andy home from the hospital on Monday, after seeing (almost!) all of the cousins and West coast uncles during visiting hours on Sunday. Tuesday we relaxed at home. A visiting nurse came each night to administer antibiotics through the new pick line. Andy spent the week resting, being forced, er, "strongly encouraged" by evil Jen and Tim :) to drink delicious fruit, Ensure, protein shakes to get his system stronger and his body a bit heavier for the surgery. The cast from Criminal Minds swung by on Wednesday and caught Andy up on how the season was wrapping up.
On Thursday we met with his neurosurgeon, Dr Hua, who graciously spent time explaining what would be done, entertained Nicholas with a model of the spine (and a cookie from the nurses) and discussed our desire to have the testing done at DFCI. Dr Hua was very helpful, took the time to really listen to the patient and his family (very refreshing!) and agreed with the additional testing that DFCI could provide, and set us up with the Pathologist at Henry Mayo hospital.
Friday had us up and out early, having breakfast outside at a local bagel shop, and then off the hospital for an additional full body bone scan, and pre-op blood and urine work. It was a pretty tiring day, being up and out for that long.
The week finished off with short visits from friends. While it was great for Andy to have visitors, it was hard on him, as he was exhausted from the pain and the pain meds he was on had the side effect of making Andy a bit anxious with lots of folks around.
We also spent a good part of the week working with DFCI to ensure that the pathology department had the correct directions for shipping the tumor back East. We also held additional conversations with Dr Janne at DFCI about Andy's appointment on 13 May. I'd be remiss if I didn't also thank Karen, the head nurse for the Thoracic Oncology department, who addressed a lot of our questions.
I flew home on Sunday, met mom at the gate, we caught up, then she hopped onto the plane that I had flew in on and headed out West. Andy went in for the surgery on Tuesday, after a very tough Monday. The surgery lasted ~5 hours, followed by 2 hours in recovery and then off to the ICU to keep Andy from contracting an infection in his surgical wound.
Dr Hua removed the tumor as well as ~50% of the T7 vertebrae. Bone concrete was used to seal and build up the T7 where the bone had been. Screws were inserted into his T6 and T8 vertebrae and a pin was setup parallel to the spine, to provide additional support for his back.
Dr Hua believes that the cancer has not made its way to the spinal cord, which is good news. And, as mentioned, Andy is out of ICU, and even stood today for a few minutes. The tumor should be on a FedEx plane tonight as I type.
Some of you have asked why its important to have the tumor tested. The mom of another young, nonsmoker Stage IV NSCLC patient pointed out that a great article explaining this showed up on the RSS feed (to the left) on 18 April: Biomarkers Predict Best Lung Cancer Therapy. The end result from the tumor will be more information which should help select the most efficacious treatment path going forward.
So - thank you to everyone that has been sending positive vibes, who visited Andy, Jen or I, called, texted, emailed, made dinners, took some Swan family member to LAX, helped with Nicholas. Thank you to the other patients that we have met who have provided guidance on testing and treatment options, and educated us through their experiences. We are truly blessed to have great friends and family.
We continue to work on getting Andy back for the 13 May appointment. I am hoping he'll be able to post something soon, hoping that he'll be back home by the end of the week or weekend. I am also going to try to figure out how to create a page with photos from this past week - we have some great ones of Andy in his johnny, wheeling his IV post around the med/surg block, not letting it slow him down.
Good night all.
Last week we brought Andy home from the hospital on Monday, after seeing (almost!) all of the cousins and West coast uncles during visiting hours on Sunday. Tuesday we relaxed at home. A visiting nurse came each night to administer antibiotics through the new pick line. Andy spent the week resting, being forced, er, "strongly encouraged" by evil Jen and Tim :) to drink delicious fruit, Ensure, protein shakes to get his system stronger and his body a bit heavier for the surgery. The cast from Criminal Minds swung by on Wednesday and caught Andy up on how the season was wrapping up.
On Thursday we met with his neurosurgeon, Dr Hua, who graciously spent time explaining what would be done, entertained Nicholas with a model of the spine (and a cookie from the nurses) and discussed our desire to have the testing done at DFCI. Dr Hua was very helpful, took the time to really listen to the patient and his family (very refreshing!) and agreed with the additional testing that DFCI could provide, and set us up with the Pathologist at Henry Mayo hospital.
Friday had us up and out early, having breakfast outside at a local bagel shop, and then off the hospital for an additional full body bone scan, and pre-op blood and urine work. It was a pretty tiring day, being up and out for that long.
The week finished off with short visits from friends. While it was great for Andy to have visitors, it was hard on him, as he was exhausted from the pain and the pain meds he was on had the side effect of making Andy a bit anxious with lots of folks around.
We also spent a good part of the week working with DFCI to ensure that the pathology department had the correct directions for shipping the tumor back East. We also held additional conversations with Dr Janne at DFCI about Andy's appointment on 13 May. I'd be remiss if I didn't also thank Karen, the head nurse for the Thoracic Oncology department, who addressed a lot of our questions.
I flew home on Sunday, met mom at the gate, we caught up, then she hopped onto the plane that I had flew in on and headed out West. Andy went in for the surgery on Tuesday, after a very tough Monday. The surgery lasted ~5 hours, followed by 2 hours in recovery and then off to the ICU to keep Andy from contracting an infection in his surgical wound.
Dr Hua removed the tumor as well as ~50% of the T7 vertebrae. Bone concrete was used to seal and build up the T7 where the bone had been. Screws were inserted into his T6 and T8 vertebrae and a pin was setup parallel to the spine, to provide additional support for his back.
Dr Hua believes that the cancer has not made its way to the spinal cord, which is good news. And, as mentioned, Andy is out of ICU, and even stood today for a few minutes. The tumor should be on a FedEx plane tonight as I type.
Some of you have asked why its important to have the tumor tested. The mom of another young, nonsmoker Stage IV NSCLC patient pointed out that a great article explaining this showed up on the RSS feed (to the left) on 18 April: Biomarkers Predict Best Lung Cancer Therapy. The end result from the tumor will be more information which should help select the most efficacious treatment path going forward.
So - thank you to everyone that has been sending positive vibes, who visited Andy, Jen or I, called, texted, emailed, made dinners, took some Swan family member to LAX, helped with Nicholas. Thank you to the other patients that we have met who have provided guidance on testing and treatment options, and educated us through their experiences. We are truly blessed to have great friends and family.
We continue to work on getting Andy back for the 13 May appointment. I am hoping he'll be able to post something soon, hoping that he'll be back home by the end of the week or weekend. I am also going to try to figure out how to create a page with photos from this past week - we have some great ones of Andy in his johnny, wheeling his IV post around the med/surg block, not letting it slow him down.
Good night all.
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