I can finally confirm the news that I hinted at on my last post: my diagnosis has switched from intimal sarcoma to Hodgkin's lymphoma! This is a miraculous development as Hodgkin's lymphoma has one of the best prognosis's of any cancer, upward towards a 90% survival rate. This is incredible news brought on by my mother's insistence of a second opinion, which we received from the City of Hope last Thursday (10/13) by Dr. Warren Chou and their team of excellent pathologists.
My doctor at the treatment center had UCLA look over my case and slides again to confirm, and they agreed with the new diagnosis, given my unexpected progress. Consequently, I have been taken off the Picasso study in lieu of a new treatment plan; interestingly enough, the main drug that I was given in the study is also the dominant drug in my new plan, which explains ~30% reduction in size about a month ago. Typically it lasts for six cycles, but since I've had chemotherapy prior to this with the same drug, I'll most likely do three to four, plus an extra two after the tumor is gone. I've also been recommended for radiation after the chemotherapy because of the size of my tumor, but we'll cross the bridge when we come to it.
The new treatment plan is a one day injection (including a 24 hour administration) every two weeks, and this counts as one cycle. It's four drugs that go by the acronym ABVD, which is common treatment for Hodgkin's lymphoma. This Monday (10/17) I started my first round with the new treatment and I'm currently weathering the storm of side effects (not too bad right now, but I definitely do notice a difference). It could be that I haven't had treatment in nearly four weeks due to a repeated low white blood count as well.
I feel this news is bringing my journey full circle, as the very first thing a doctor said to me when I walked into the emergency room that fateful day of June 23rd, 2011 was that, based on the cursory x-ray, that it looked like classic Hodgkin's lymphoma. In between then and now there have been devastating ups and downs, but with my amazing support system of loving friends and family I've been able to keep afloat the majority of the chaos, and for that I am eternally grateful.
Also, I'd like to give special love and thanks to my mom, because, once again, she had the early intuition that has probably saved my life.
Wednesday, October 19, 2011
Monday, September 26, 2011
09/26/11: Thanks!
Just want to say thanks to all those who donated and/or showed up to the fundraiser this past Saturday. I was deeply moved to see you all there and by the sheer generosity and support. I want to especially thank those who organized the event and A. I. Models (aimodels.org) for donating what they raised to my cause. Totally unexpected and incredibly kind, words cannot quite express my gratitude.
Currently, I'm awaiting news for a possible change in treatment and treatment scheduling. But as is, nothing is confirmed, so I'll wait to post details when/if it is.
Currently, I'm awaiting news for a possible change in treatment and treatment scheduling. But as is, nothing is confirmed, so I'll wait to post details when/if it is.
Tuesday, September 6, 2011
09/06/11: Some Good News
Firstly I apologize for the delay in update, not much significant has changed in terms of my health state, which is good. Between my last post and today I've been through my second chemo cycle (08/24 - 08/26) and it went very smoothly. It was like night and day compared to my first cycle as the symptoms were way less intense and were not piled on top of the other complications (as it's been a month since I've been mostly absent of shortness of breath, coughing, and tumor related fatigue). I've had some chest pain come back, but it's been diagnosed as acid reflux and I've been given proper medication to combat it.
Most importantly, in the time between these posts, I took another CT Scan apart of my program's schedule to measure my progress.
Today, while doing some preliminary tests to start treatment again, I got the results of that scan told to me: my tumor has shrunk by about 30%! I won't go into the statistics and likelihoods on the effectiveness of chemotherapy treatment for my particular cancer, but it is a shockingly and somewhat rare good sign. It's still not small enough for surgery, and ideally, the tumor would have to move from around important arteries and great vessels for the risk factor of operation to lower, but it's definitely closer to that goal. It's also important to note that there is no guarantee on the rate at which it will shrink, if it continues, as I've gotten conflicting pathology identifying some parts of the tumor from low to high grade. But regardless, the news nearly brought tears to my eyes and I'm so very happy to be able to share it to all of my friends and family and everyone else sending their support. You all mean a lot to me and my road to recovery.
Tomorrow, Wednesday (09/07), will be my third chemo cycle, but I look forward to it as the next step in my ongoing battle.
Also, there will be a Fall Fish Festival on September 24th where part of the proceeds will be donated to fund my treatment and recovery, something that may become a burden as I progress. The flyer is attached below (click to enlarge) for more information, but if nothing else, if you can make it, I'd love to see you there!
Most importantly, in the time between these posts, I took another CT Scan apart of my program's schedule to measure my progress.
Today, while doing some preliminary tests to start treatment again, I got the results of that scan told to me: my tumor has shrunk by about 30%! I won't go into the statistics and likelihoods on the effectiveness of chemotherapy treatment for my particular cancer, but it is a shockingly and somewhat rare good sign. It's still not small enough for surgery, and ideally, the tumor would have to move from around important arteries and great vessels for the risk factor of operation to lower, but it's definitely closer to that goal. It's also important to note that there is no guarantee on the rate at which it will shrink, if it continues, as I've gotten conflicting pathology identifying some parts of the tumor from low to high grade. But regardless, the news nearly brought tears to my eyes and I'm so very happy to be able to share it to all of my friends and family and everyone else sending their support. You all mean a lot to me and my road to recovery.
Tomorrow, Wednesday (09/07), will be my third chemo cycle, but I look forward to it as the next step in my ongoing battle.
Also, there will be a Fall Fish Festival on September 24th where part of the proceeds will be donated to fund my treatment and recovery, something that may become a burden as I progress. The flyer is attached below (click to enlarge) for more information, but if nothing else, if you can make it, I'd love to see you there!
Tuesday, August 9, 2011
08/09/11: Worse Before Better
Been a rollercoaster of health for the last week. After my first chemo cycle, although I had felt great initially, new symptoms from chemo (extreme constant nausea) started collecting with my old symptoms (coughing, shortness of breath, fatigue) getting worse. Last Sunday (07/31) I couldn't lie down without coughing uncontrollably without stopping until I sat back up. Also as the day progressed my breathing became extremely difficult, to the point where at certain moments it was like I was suffocating between strategic breaths. That night and Monday night I had to sleep sitting up in a chair, but really, not much sleep actually happened.
Tuesday (08/02) afternoon, alongside the two nights of lack of sleep compounded, I felt particularly fatigued that no amount of sleep would seem to satisfy. Before lunch I started a coughing spell that ended in me vomiting just bile, a stipulation that my doctor said warranted a trip to the hospital, and that's exactly where my Mom knew to take me.
We returned to the Santa Monica UCLA Medical Center Emergency Room where they took blood, administered a chest x-ray, set up an IV for hydration and nausea medicine, and briefly had me on oxygen. The blood work came back slightly anemic, explaining why I had been feeling weak lately and because of my cough and shortness of breath decided it be best if I stayed the night. That night I received more nausea medicine as well as a steroid to decrease inflammation and hopefully combat the coughing. Although what really raised my spirits that night were the flurry of visitors I got, reminding me of the incredible support system that I have. I thank each and every one of you that made it
Wednesday (08/03), the next day, they had scheduled a thoracentesis, a procedure they had wanted to do a month ago at my last hospital stay but there was not enough fluid for them to do it. This time the x-ray showed an abundant amount, some of the "worst they'd ever seen" and promptly did the procedure that drained roughly a 1.5 liters of fluid pressing against my lungs causing the cough and shortness of breath. The doctors were nice enough to let me take a video of it which I've posted below. WARNING: It's not for the faint of heart, so practice caution when viewing.
Although there was some initial and expected discomfort as my lung re-expanded, I immediately felt better and was discharged Thursday (08/04) afternoon with just a new prescription for pain meds until the discomfort went away. I can honestly say this is the best I've felt in the two months since this all began. I don't know how long it'll last, but I'm appreciating it a day at a time and it's helped fuel my hope.
Now for the video:
Tuesday (08/02) afternoon, alongside the two nights of lack of sleep compounded, I felt particularly fatigued that no amount of sleep would seem to satisfy. Before lunch I started a coughing spell that ended in me vomiting just bile, a stipulation that my doctor said warranted a trip to the hospital, and that's exactly where my Mom knew to take me.
We returned to the Santa Monica UCLA Medical Center Emergency Room where they took blood, administered a chest x-ray, set up an IV for hydration and nausea medicine, and briefly had me on oxygen. The blood work came back slightly anemic, explaining why I had been feeling weak lately and because of my cough and shortness of breath decided it be best if I stayed the night. That night I received more nausea medicine as well as a steroid to decrease inflammation and hopefully combat the coughing. Although what really raised my spirits that night were the flurry of visitors I got, reminding me of the incredible support system that I have. I thank each and every one of you that made it
Wednesday (08/03), the next day, they had scheduled a thoracentesis, a procedure they had wanted to do a month ago at my last hospital stay but there was not enough fluid for them to do it. This time the x-ray showed an abundant amount, some of the "worst they'd ever seen" and promptly did the procedure that drained roughly a 1.5 liters of fluid pressing against my lungs causing the cough and shortness of breath. The doctors were nice enough to let me take a video of it which I've posted below. WARNING: It's not for the faint of heart, so practice caution when viewing.
Although there was some initial and expected discomfort as my lung re-expanded, I immediately felt better and was discharged Thursday (08/04) afternoon with just a new prescription for pain meds until the discomfort went away. I can honestly say this is the best I've felt in the two months since this all began. I don't know how long it'll last, but I'm appreciating it a day at a time and it's helped fuel my hope.
Now for the video:
Wednesday, July 27, 2011
07/26/11: Treatment Starts (Finally)
Between now and the last update, not much happened besides a few new prescriptions to manage my heightened symptoms and to prepare myself for chemo (pain medication, cough suppressant inhaler, a few different nausea medications, migraine medication), and an emergency CT Scan last Friday (07/22) that was required for the study doctors. Symptoms had been getting worse, including weakness and pain surrounding my joints, persistent cough, and most especially the return of shortness of breath that seems to escalate as the night goes on to the point where at points I felt a few breathes away from suffocation. And all these things combined made for a difficult time falling asleep.
I can happily report that today (07/26) I have started my treatment in the Picasso study. Despite the wait to get hooked up and the few times I was required to lie down briefly for an EKG (lying down flat only causes the mass to press against my air passages making breathing very difficult), the actual treatment was smooth sailing. I was given Doxorubicin, which I would be given any way, and the experimental drug Palifosfamide (or placebo) which is similar to a drug I'd be taking outside of the study, it just has less side effects.
I go back to continue dosages tomorrow and Friday morning (07/27 - 28) and that will complete cycle one. So far I haven't experienced any uncomfortable side effects, but I'm told those will come when all the dosages are administered.
Even though I anticipated it, I was still scared and anxious about the whole process but it was alleviated as soon as all of you have shown tremendous support. I'm glad I'm finally on a road to possible remission, and I'm especially glad I have so many people I care about by my side.
I can happily report that today (07/26) I have started my treatment in the Picasso study. Despite the wait to get hooked up and the few times I was required to lie down briefly for an EKG (lying down flat only causes the mass to press against my air passages making breathing very difficult), the actual treatment was smooth sailing. I was given Doxorubicin, which I would be given any way, and the experimental drug Palifosfamide (or placebo) which is similar to a drug I'd be taking outside of the study, it just has less side effects.
I go back to continue dosages tomorrow and Friday morning (07/27 - 28) and that will complete cycle one. So far I haven't experienced any uncomfortable side effects, but I'm told those will come when all the dosages are administered.
Even though I anticipated it, I was still scared and anxious about the whole process but it was alleviated as soon as all of you have shown tremendous support. I'm glad I'm finally on a road to possible remission, and I'm especially glad I have so many people I care about by my side.
Sunday, July 17, 2011
07/17/11: Correction
I've been incorrectly referring to my tumor as a spindle cell sarcoma, when in fact that's just a description of a type; basically what the cells look like. It's more specific designation is an intimal sarcoma. I will refer to it as such from here on. Sorry for the confusion.
Friday, July 15, 2011
07/15/11: First Steps.
It's been a hectic last couple of days, but with that came lots of new information and action, so I won't delay any further.
On Wednesday (07/13) I had my first appointment at the Sarcoma Oncology Center here in Santa Monica, where I gave consent to participate in the Picasso Study. If I qualify, it's a possibility that I'll be taking a newer chemo medicine alongside the chemo medicine I would take anyways. The physician at the center said my chances to qualify are based on the grade of the tumor, which the final pathology from UCLA Santa Monica determined as low to intermediate. As long as the center's pathologists can determine that it's at least intermediate, I qualify, and the physician believed my chances were good. If I don't qualify for the study, I will still be treated with the same medicine, just not the newer one. Because the grade of the tumor has been confirmed as low to intermediate, chemotherapy is the best first step in an effort to shrink it down, because as is, it's inoperable. It is not a guarantee, but it's a start.
On Thursday (08/13), my mom was able to squeeze me in at UCLA's Ronald Reagan facility to implant a port-a-cath under my skin so I would be ready when my chemotherapy started. We arrived at 2:00 p.m. and left at 8:00 p.m. and despite the fact that I couldn't eat or drink until the operation at around 4:00, it went smoothly. There is still pain around the incision, but it's been subsiding gradually since the surgery. However, I got two migraines in less than a 12 hour period, which has never happened and I don't know if it's a consequence from the medicine and anesthetic administered during the surgery or something dietary/lack of hydration.
As far as my overall health, some shortness of breath has come back after minor activity and my usual short-lived chest pain in the morning has been lasting much longer. My legs also still don't quite feel right with possible swelling at the knees and ankles, but I believe it's still a matter of lack of use, which is something I need to be more adamant about remedying.
My next appointment is next Tuesday (07/19) with my primary doctor for this particular case. I may have another appointment at the Sarcoma Oncology Center on Monday as well, but we've still got to wait for their pathologists to give them the okay to begin treating me.
I appreciate all the warm words and concerns you've all been sending me, and I'm now glad there is a plan in place to fight this thing!
On Wednesday (07/13) I had my first appointment at the Sarcoma Oncology Center here in Santa Monica, where I gave consent to participate in the Picasso Study. If I qualify, it's a possibility that I'll be taking a newer chemo medicine alongside the chemo medicine I would take anyways. The physician at the center said my chances to qualify are based on the grade of the tumor, which the final pathology from UCLA Santa Monica determined as low to intermediate. As long as the center's pathologists can determine that it's at least intermediate, I qualify, and the physician believed my chances were good. If I don't qualify for the study, I will still be treated with the same medicine, just not the newer one. Because the grade of the tumor has been confirmed as low to intermediate, chemotherapy is the best first step in an effort to shrink it down, because as is, it's inoperable. It is not a guarantee, but it's a start.
On Thursday (08/13), my mom was able to squeeze me in at UCLA's Ronald Reagan facility to implant a port-a-cath under my skin so I would be ready when my chemotherapy started. We arrived at 2:00 p.m. and left at 8:00 p.m. and despite the fact that I couldn't eat or drink until the operation at around 4:00, it went smoothly. There is still pain around the incision, but it's been subsiding gradually since the surgery. However, I got two migraines in less than a 12 hour period, which has never happened and I don't know if it's a consequence from the medicine and anesthetic administered during the surgery or something dietary/lack of hydration.
As far as my overall health, some shortness of breath has come back after minor activity and my usual short-lived chest pain in the morning has been lasting much longer. My legs also still don't quite feel right with possible swelling at the knees and ankles, but I believe it's still a matter of lack of use, which is something I need to be more adamant about remedying.
My next appointment is next Tuesday (07/19) with my primary doctor for this particular case. I may have another appointment at the Sarcoma Oncology Center on Monday as well, but we've still got to wait for their pathologists to give them the okay to begin treating me.
I appreciate all the warm words and concerns you've all been sending me, and I'm now glad there is a plan in place to fight this thing!
Saturday, July 9, 2011
07/09/11: And More Anticipation.
I was discharged from the hospital again on Thursday (07/07) as my fevers, although high, had been stable and there were no signs of infection or pneumonia.
We returned the next day, Friday (07/08), for our appointment to receive the final pathology results. Unfortunately, they're still not in due to the incredibly rare nature of this form of cancer. They informed us that so far the tumor appears to be intermediate, between low and high grade, but they still have another strain to test in order to be conclusive. They told us it should be completed by Wednesday (07/13).
A little frustrating, but I understand they want to be completely certain about the details of this tumor because it will ultimately determine which treatments will be effective, ineffective, or even harmful. I'd rather they take the time rather than to rush into a treatment option that may prove to unnecessary or malignant.
I also received news that I may be starting my treatment at the Santa Monica UCLA Medical Center instead of elsewhere. Which is good news as I already have all my records there and it's close to home.
For the time being I'm at home, prescribed with a codeine cough syrup and a short antibiotic script. Some strength is coming back, but still not feeling close to 100%. Getting plenty of rest and love and support from you guys though, which is helping me tremendously and I don't know how'd I get through this without it.
We returned the next day, Friday (07/08), for our appointment to receive the final pathology results. Unfortunately, they're still not in due to the incredibly rare nature of this form of cancer. They informed us that so far the tumor appears to be intermediate, between low and high grade, but they still have another strain to test in order to be conclusive. They told us it should be completed by Wednesday (07/13).
A little frustrating, but I understand they want to be completely certain about the details of this tumor because it will ultimately determine which treatments will be effective, ineffective, or even harmful. I'd rather they take the time rather than to rush into a treatment option that may prove to unnecessary or malignant.
I also received news that I may be starting my treatment at the Santa Monica UCLA Medical Center instead of elsewhere. Which is good news as I already have all my records there and it's close to home.
For the time being I'm at home, prescribed with a codeine cough syrup and a short antibiotic script. Some strength is coming back, but still not feeling close to 100%. Getting plenty of rest and love and support from you guys though, which is helping me tremendously and I don't know how'd I get through this without it.
Wednesday, July 6, 2011
07/06/11: Re-Admitted.
Yesterday morning (07/05/11), after a tumultuous night's sleep, my mom took my temperature at home and it was around 102 degrees. My doctor upon discharge had made it clear that a high fever would be a significant reason to be re-admitted, so we arrived at the UCLA Santa Monica Medical Center (same hospital as before) ER at around 12:40 P.M. and I was admitted back into the hospital around 8:00 P.M. In that time they administered an antibiotic to fight possible pneumonia infection, as my cough had worsened and the sputum had become discolored.
The cough raised my own concern (as it became extremely painful, tiring, and made breathing difficult) so I requested to be put back on the hospital's cough suppressant (benzonatate). Heart rate was also high during the several vital checks so they ordered a EKG that confirmed the elevated heart rate, which was around 110. Ended the night with a slight fever in which they just gave me tylenol to lower the temperature. Slept well, for the most part.
Today (07/06) I got news that pathology results are still not in from the second biopsy. They also did another CT Scan of my abdomen to check for pneumonia as well as to monitor the growth, to see if there have been changes. They had planned on removing fluid near my lungs to check for possible infection, but a quick ultrasound ruled it out as there was not enough fluid that was worth the risk of doing the procedure.
I was hit with a wave of nausea after getting about 3/4ths through my breakfast and it has thankfully not returned, even as I ate lunch. Cough is still present but nearly as frequent or bad.
Expected pathology results are still scheduled to be ready by Friday (07/08) and that's when things will really start moving. Until then, I appreciate all the wonderful visitors and continued support from all of you! (if you'd like to visit, just contact my mom or me for the room number. I didn't post it here because being in a hospital it is subject to change.)
The cough raised my own concern (as it became extremely painful, tiring, and made breathing difficult) so I requested to be put back on the hospital's cough suppressant (benzonatate). Heart rate was also high during the several vital checks so they ordered a EKG that confirmed the elevated heart rate, which was around 110. Ended the night with a slight fever in which they just gave me tylenol to lower the temperature. Slept well, for the most part.
Today (07/06) I got news that pathology results are still not in from the second biopsy. They also did another CT Scan of my abdomen to check for pneumonia as well as to monitor the growth, to see if there have been changes. They had planned on removing fluid near my lungs to check for possible infection, but a quick ultrasound ruled it out as there was not enough fluid that was worth the risk of doing the procedure.
I was hit with a wave of nausea after getting about 3/4ths through my breakfast and it has thankfully not returned, even as I ate lunch. Cough is still present but nearly as frequent or bad.
Expected pathology results are still scheduled to be ready by Friday (07/08) and that's when things will really start moving. Until then, I appreciate all the wonderful visitors and continued support from all of you! (if you'd like to visit, just contact my mom or me for the room number. I didn't post it here because being in a hospital it is subject to change.)
Monday, July 4, 2011
07/04/11: Introduction + Update
Happy 4th everyone!
First I would like to thank everyone who has supported me through this trial. I've been brought to tears several times when I face the thought that so many people care about me so deeply and I am extremely lucky to have relationships with all of you.
As a result of the many people that support me I figured it would be a good idea to start a blog so everyone can stay updated on my progress and treatment in a more efficient way. It may also serve as a vehicle for my own emotional recovery through this process. Please feel free to continue calling/texting/emailing me, but just in case I'm not available soon enough to return your correspondence, there will always be this blog to fall back on with the most current information. For a few of you, this may all be new news, so I'll try my best to be brief, but comprehensive.
Update:
Last Thursday (06/23) I walked into the UCLA Santa Monica Medical Center ER because of a bad cough, shortness of breath, extreme fatigue and chest pain that I had been battling for a week and a half. After a chest x-ray they admitted me immediately into the hospital as they ran various tests (CT scans, biopsies, PET scans, blood work) to interpret what they saw in that initial x-ray. Eight days later, I have been diagnosed with a rare cancer called Spindle Cell Sarcoma. Confirmed from the PET scan imaging, the majority of the mass is in the anterior mediastinal and it encases portions of the aortic arch and its three branches, ascending aorta, the main and right pulmonary arteries, bilateral brachiocephalic veins and superior vena cava without occlusion. Epicenter of the mass is in the right mediastinal with slight shift of the heart and great vessels to the left. It is 14 x 11 cm in size.
A second biopsy was performed on 07/01 in order to examine the grade of the tumor, low or high, and its staging. This will inform them of what treatment strategy would be best. The initial biopsy diagnosed the tumor as low grade, but because it was such a small sample away from the epicenter they wanted a second sample to make sure. The results of the second biopsy should be in by 07/08 as that's my next appointment date.
I was voluntarily discharged on 07/02. Because of the long weekend ahead, the doctor agreed that it wasn't necessary for me to stay as no more tests would be administered and I was in good condition. He still recommended lots of rest, but no need for hospital supervision.
Hope this post shed some light on the current situation. This will generally be my first go-to when I receive any information regarding my condition.
This is a public blog so if you know of anyone who might be concerned that I may have missed, feel free to direct them here. Again, I cannot thank you all enough for the tremendous love and support!
First I would like to thank everyone who has supported me through this trial. I've been brought to tears several times when I face the thought that so many people care about me so deeply and I am extremely lucky to have relationships with all of you.
As a result of the many people that support me I figured it would be a good idea to start a blog so everyone can stay updated on my progress and treatment in a more efficient way. It may also serve as a vehicle for my own emotional recovery through this process. Please feel free to continue calling/texting/emailing me, but just in case I'm not available soon enough to return your correspondence, there will always be this blog to fall back on with the most current information. For a few of you, this may all be new news, so I'll try my best to be brief, but comprehensive.
Update:
Last Thursday (06/23) I walked into the UCLA Santa Monica Medical Center ER because of a bad cough, shortness of breath, extreme fatigue and chest pain that I had been battling for a week and a half. After a chest x-ray they admitted me immediately into the hospital as they ran various tests (CT scans, biopsies, PET scans, blood work) to interpret what they saw in that initial x-ray. Eight days later, I have been diagnosed with a rare cancer called Spindle Cell Sarcoma. Confirmed from the PET scan imaging, the majority of the mass is in the anterior mediastinal and it encases portions of the aortic arch and its three branches, ascending aorta, the main and right pulmonary arteries, bilateral brachiocephalic veins and superior vena cava without occlusion. Epicenter of the mass is in the right mediastinal with slight shift of the heart and great vessels to the left. It is 14 x 11 cm in size.
A second biopsy was performed on 07/01 in order to examine the grade of the tumor, low or high, and its staging. This will inform them of what treatment strategy would be best. The initial biopsy diagnosed the tumor as low grade, but because it was such a small sample away from the epicenter they wanted a second sample to make sure. The results of the second biopsy should be in by 07/08 as that's my next appointment date.
I was voluntarily discharged on 07/02. Because of the long weekend ahead, the doctor agreed that it wasn't necessary for me to stay as no more tests would be administered and I was in good condition. He still recommended lots of rest, but no need for hospital supervision.
Hope this post shed some light on the current situation. This will generally be my first go-to when I receive any information regarding my condition.
This is a public blog so if you know of anyone who might be concerned that I may have missed, feel free to direct them here. Again, I cannot thank you all enough for the tremendous love and support!
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