I am sitting in the chair getting my next dose. Side effects with this are minimal but make me a bit drowsy the first day especially. Time to take a nap and relax.
Thursday, January 15, 2015
First Scan on New Trial
Good news folks! Scan results came back with no spread of disease and a decrease in size from 3.1 to 2.8cm. I am so excited and happy with this result. Still not the end but a great step in the right direction. I have even started talks to move treatment up to Portland which will help with the commute. If the trend continues we may even get to start talking about removing the affected node and keeping a good eye on things.
Thursday, December 4, 2014
New Trial!
Ok folks, I apologize for the long time between posts. The past couple months have been a bit crazy but I think things are finally settling out.
First, the good news: I have begun a new immunotherapy trial!!!
Pretty excited about this. It is very similar to a trial that I was trying to get on but had closed too soon. However it is down in Los Angeles so I will be traveling down South every two weeks for an unforeseeable amount of time. It is possible to transfer treatment to Portland but I don't know the timeline of that just yet. Of course to get on a trial you need progressive disease. My scans showed only a small amount of growth but enough to make me eligible. Luckily no new spread of disease.
The Phase 1 trial scene is crazy. I was flying up and down the coast to get my name on as many lists as possible and even when you sign consent nothing is guaranteed. Today was the start of treatment so I can finally breathe a sigh of relief. I am pretty excited about this new treatment as it targets the PD-L1 protein and has shown very good results for bladder cancer.
Here's a YouTube link on PDL1
Some Results from the PD-L1 trial by Genentech (not the exact drug I am on)
First, the good news: I have begun a new immunotherapy trial!!!
Pretty excited about this. It is very similar to a trial that I was trying to get on but had closed too soon. However it is down in Los Angeles so I will be traveling down South every two weeks for an unforeseeable amount of time. It is possible to transfer treatment to Portland but I don't know the timeline of that just yet. Of course to get on a trial you need progressive disease. My scans showed only a small amount of growth but enough to make me eligible. Luckily no new spread of disease.
The Phase 1 trial scene is crazy. I was flying up and down the coast to get my name on as many lists as possible and even when you sign consent nothing is guaranteed. Today was the start of treatment so I can finally breathe a sigh of relief. I am pretty excited about this new treatment as it targets the PD-L1 protein and has shown very good results for bladder cancer.
Here's a YouTube link on PDL1
Some Results from the PD-L1 trial by Genentech (not the exact drug I am on)
Monday, October 13, 2014
Roller Coasters
Although a blast at Amusement Parks, roller coasters in real life can lose their appeal.
I found out over a week ago that the fast filling immunotherapy trial has officially closed. Never had a chance of making it into the trial due to the timing of my treatments. As frustrating as this is it makes me even more frustrated of why I was kicked off the last trial. As a scientist I understand the reasonings of how they are conducting these trials. As a person, it is difficult to comprehend and arguably inhumane. To be told on one hand you have a terminal disease and know that there is a possible drug existing to cure it, but you can't have it, is a bit cruel.
Scans are next week so I am really hoping that things are still stable or shrinking. Provided regressive disease won't put me on the list for other clinical trials (we have a few more leads) maybe a break from treatment will be good.
On the plus side, physically I am doing well. I even took a trip last week to hang out with my little sister and her husband over in Oahu. Snorkeling, paddle boarding, and reading on the beach with a drink in hand can help calm the mind. At one point I was out on the paddle board near Waikiki with rainbows over head and turtles in the water. If that doesn't put a smile on your face I don't know what will.
Life is Good
I found out over a week ago that the fast filling immunotherapy trial has officially closed. Never had a chance of making it into the trial due to the timing of my treatments. As frustrating as this is it makes me even more frustrated of why I was kicked off the last trial. As a scientist I understand the reasonings of how they are conducting these trials. As a person, it is difficult to comprehend and arguably inhumane. To be told on one hand you have a terminal disease and know that there is a possible drug existing to cure it, but you can't have it, is a bit cruel.
Scans are next week so I am really hoping that things are still stable or shrinking. Provided regressive disease won't put me on the list for other clinical trials (we have a few more leads) maybe a break from treatment will be good.
On the plus side, physically I am doing well. I even took a trip last week to hang out with my little sister and her husband over in Oahu. Snorkeling, paddle boarding, and reading on the beach with a drink in hand can help calm the mind. At one point I was out on the paddle board near Waikiki with rainbows over head and turtles in the water. If that doesn't put a smile on your face I don't know what will.
Life is Good
Wednesday, September 24, 2014
Last week was rough...
For those of you who read last week's post you know I was in a bit of mourning early last Wednesday. Well it turned out that the rest of the day was also a bit gloomy. I had my blood tested that Tuesday to determine if my Lipase had dropped back to a normal range. This test takes time and so I do it the day before my chemo. My clinical trial coordinator contacted me Wednesday morning letting me know that I was 10 points out of range and that I needed to get tested right away to see if it had dropped in 12 hours (possible, but pushing things). I rushed down to the UW hospital to do blood work and wait. Not an easy thing to do when you know that the trial that has been working for you is possibly going to drop you from testing and also struggling with the loss of a good friend. Luckily my sister Kendra was able to meet up with me for coffee and a stroll along Alki beach. We talked and reflected on Mike as I tried not to check my email every five minutes for a message saying that my blood work was good. That email never came.
Later in the day at my doctor appointment I was informed what I feared, that my blood work had made me ineligible for the 4th week in a row, disqualifying me from further treatment on the trial. Times like these are tough, knowing that you have no control over the happenings crashing down around you. I have learned to let go and not reach for the unattainable reins. This doesn't change the hurt but it does help soothe the anger and confusion and self loathing that don't help. Phase one trials of drugs are strictly regulated and so there was no negotiation of staying on the trial or getting the drug otherwise.
Of course my team always has a plan. In fact, this may even be a good thing. Although I was responding well to that trial drug, it and others like it have never shown what they call durable or long lasting results. It is possible that the drug had worked for me as long as it was going to. Getting off of this trial can make me eligible for others, like the immunotherapy trial that we had been eyeing since my last recurrence. It opened in late July with hopes of filling in about 18 months. Turns out it is on pace to close in November! At that rate, me staying on the last trial for two more months it would close and I may never have the opportunity to try the drug. This way I get a few weeks off with no poking or prodding and will return in late October for another scan. Based on those results we will coordinate our next plan of attack. Curiously it places me in another catch 22: if it grows I can get onto the new trial, if it continues to shrink Hooray! but no trial eligibility. So I am almost hoping the stupid tumor has a tiny bit of growth as this immunotherapy drug has shown very good durable results. Honestly I am not sure what to hope for. In the meantime I am looking to relax and recharge from the physical and emotional roller coaster of the past few weeks.
For those of you who knew Mike, his good friend Craig had some excellent words to say about him that were posted on Mike's blog. Mike's memorial is Saturday, September 27th 2-5pm at Elephant’s Delicatessen, The Corbett Room, 5221 Corbett Avenue, SW Portland, OR.
Later in the day at my doctor appointment I was informed what I feared, that my blood work had made me ineligible for the 4th week in a row, disqualifying me from further treatment on the trial. Times like these are tough, knowing that you have no control over the happenings crashing down around you. I have learned to let go and not reach for the unattainable reins. This doesn't change the hurt but it does help soothe the anger and confusion and self loathing that don't help. Phase one trials of drugs are strictly regulated and so there was no negotiation of staying on the trial or getting the drug otherwise.
Of course my team always has a plan. In fact, this may even be a good thing. Although I was responding well to that trial drug, it and others like it have never shown what they call durable or long lasting results. It is possible that the drug had worked for me as long as it was going to. Getting off of this trial can make me eligible for others, like the immunotherapy trial that we had been eyeing since my last recurrence. It opened in late July with hopes of filling in about 18 months. Turns out it is on pace to close in November! At that rate, me staying on the last trial for two more months it would close and I may never have the opportunity to try the drug. This way I get a few weeks off with no poking or prodding and will return in late October for another scan. Based on those results we will coordinate our next plan of attack. Curiously it places me in another catch 22: if it grows I can get onto the new trial, if it continues to shrink Hooray! but no trial eligibility. So I am almost hoping the stupid tumor has a tiny bit of growth as this immunotherapy drug has shown very good durable results. Honestly I am not sure what to hope for. In the meantime I am looking to relax and recharge from the physical and emotional roller coaster of the past few weeks.
For those of you who knew Mike, his good friend Craig had some excellent words to say about him that were posted on Mike's blog. Mike's memorial is Saturday, September 27th 2-5pm at Elephant’s Delicatessen, The Corbett Room, 5221 Corbett Avenue, SW Portland, OR.
Wednesday, September 17, 2014
Goodbye good friend
Today my good friend Mike Ferlan finished his battle with cancer. Although it may have taken him it did not prevent him from having an amazing life.
Mike was a fellow coworker at HP and we became friends over board games and working out. He eventually convinced me to train for a triathlon in which I kicked his butt to his disdain (Mike is highly competitive). Little did I know our friendship would grow to an undesirable kinship. My first cancer scare was in December of 2010. We seemed to catch it early and didn't see it again for nearly two years. Mike was supportive at the time but neither of us knew that he would be joining ranks in the fight for your life against cancer. I distinctly remembering hearing the news of Mike's crazy trip to a Chinese hospital in the middle of the night and later the news of his prognosis, 16 months. I wept and cursed and was confused. Mike had just completed his first Iron Man less than a year before this so how in the hell does a non-smoker have stage 4 lung cancer?! Mike, an optimist to a fault, looked at this challenge straight in the face and said "Life is Good". I had a surprise awaiting me as well that fall, stage 4 bladder cancer, fuck. So Mike and I became chemo buddies. Sharing our horror stories of Cisplatin but also supporting each other through it all. We were able to empathize with the struggle, the emotions, the fears, and the hope. I'd like to think we both gained some clarity as well and tried to focus on what was important in our lives.
Between Mike's treatments he set out to do the things he loved in life. Hell I think his last two years on this rock were some of his best. Scuba diving in the Galapagos, traveling through Italy, continuing and improving his artwork, things people take a lifetime to do. He took those 16 months and stretched them out to 2+ years filled with family and friends and adventure.
I said earlier he finished his battle because I do not believe he lost. He may not have defeated cancer but it did not defeat him. Leave it to Mike to push a draw when the odds are stacked against him.
Mike was a fellow coworker at HP and we became friends over board games and working out. He eventually convinced me to train for a triathlon in which I kicked his butt to his disdain (Mike is highly competitive). Little did I know our friendship would grow to an undesirable kinship. My first cancer scare was in December of 2010. We seemed to catch it early and didn't see it again for nearly two years. Mike was supportive at the time but neither of us knew that he would be joining ranks in the fight for your life against cancer. I distinctly remembering hearing the news of Mike's crazy trip to a Chinese hospital in the middle of the night and later the news of his prognosis, 16 months. I wept and cursed and was confused. Mike had just completed his first Iron Man less than a year before this so how in the hell does a non-smoker have stage 4 lung cancer?! Mike, an optimist to a fault, looked at this challenge straight in the face and said "Life is Good". I had a surprise awaiting me as well that fall, stage 4 bladder cancer, fuck. So Mike and I became chemo buddies. Sharing our horror stories of Cisplatin but also supporting each other through it all. We were able to empathize with the struggle, the emotions, the fears, and the hope. I'd like to think we both gained some clarity as well and tried to focus on what was important in our lives.
Between Mike's treatments he set out to do the things he loved in life. Hell I think his last two years on this rock were some of his best. Scuba diving in the Galapagos, traveling through Italy, continuing and improving his artwork, things people take a lifetime to do. He took those 16 months and stretched them out to 2+ years filled with family and friends and adventure.
I said earlier he finished his battle because I do not believe he lost. He may not have defeated cancer but it did not defeat him. Leave it to Mike to push a draw when the odds are stacked against him.
On top of Silver Star Mountain, January 2014
Sunday, September 14, 2014
More Good Scans!!
So last week was scan week (two more months gone by?!). After the hiccup with the blockage and missing a treatment I wasn't so sure what to expect but hoping for the best. Good news is that the node continues to shrink. Not as drastically as last time but still a significant amount. However, my blood work was not too great. Turns out my Lipase was over double the amount that they are allowed to administer drug. The docs aren't concerned on my well being and are certain it is due to my body still recovering from surgery. Tricky part is that there isn't much I can do to bring the number down. We will try again this Wednesday. I am thinking low lipase thoughts, because if the numbers aren't right this week it will be four weeks off drug and the clinical trial sponsor won't be too happy about that...
Friday, August 29, 2014
Back Home
Made it out of the hospital last night and oh does it feel good to shower and sleep in your own bed! Of course as the prerequisite to being discharged I had to earn the shirt shown below.
Have a great holiday weekend! I think I am going to keep it low key.
Subscribe to:
Posts (Atom)