I finished my radiation on 04/02/2012 at UCLA Radiology in Brentwood while observing and feeling few if any side effects. The following week after that last treatment I got a cold that didn't seem to want to go away. At times, the mucus build-up and slight breathlessness reminded me of my early symptoms pre-diagnosis. These got worse, but inconsistent; from mid-April to the the beginning of May each day would seem like a new ailment absent of the one from the previous day. Be it chest heaviness, shortness of breath, random fatigue, or what seemed like a "lump" in my throat, it was like a revolving door of symptoms that made me worried again.
When I visited my physician at the Sarcoma Oncology Center they were extremely confident that it was just side effects of radiation, and based on information I had received from UCLA, the side effects did match up and there have been testimonials of the symptoms lasting for a month or even more. This gave me some peace of mind.
On 05/07, Monday night before bed I noticed a scattering of painless little red bumps under my left armpit. The next day I went to my physician at the Oncology Center to verify my suspicion which was correct: shingles. He prescribed me a 10 day script of Acyclovir, effectively shortening the duration of infection and healing. Curiously though, I didn't feel any pain, one of the most ubiquitous symptoms of shingles. I guess I just got lucky. However, the shingles did make me consider the weak state of my immunes system, possibly another contribution from the radiation symptoms.
That Wednesday (05/09) I had a follow-up with the UCLA Radiology department with Dr. Selch. He noted that the symptoms did seem related to radiation, even though it was a low dose. The only one that perplexed him was the chest pain, so he had me do an x-ray that day and I haven't heard back from them. (I was told no news is good news, so I'm hoping that is the case.)
On that Friday (05/11) I had another PET scan to monitor progress. This following Tuesday (05/15) I got the results in from my physician at the Oncology Center. The mediastinal mass still shows no activity and continues to shrink, but there was small (less than 2 cm) activity in a lymph node below my left armpit and below my left pectoral. Both where the site of my shingles appeared. My doctor was concerned until he realized that the lymph nodes could have just been swollen from the shingles, a symptom that's known to happen frequently. He also said some of my chest pain could have been attributed by the shingles as well. Either way, he is ordering an ultrasound biopsy for next or following week, hoping that if it is shingles related it will just go back to normal. He also told me not to worry about relapse unless I observe any of the four major symptoms: soaking night sweats, fever, chills, and/or unexplained weight loss, of which I've had none.
I'm staying positive. I am extremely relieved that the mass in my chest is still dead and shrinking, as it confirms that the problems I've been having around them are probably just radiation side effects. But it just goes to show that this journey is not close to done, and I'm so grateful and thankful for the continued support.
P.S. I also celebrated my 25th birthday this Monday (05/14) and I can't think of a better gift than the fact that I even got to that day, and all of you, with your love and support helped push me there. So thank you all for the best birthday gift ever.
Friday, May 18, 2012
Saturday, March 24, 2012
03/24/12: Lots of News!
I apologize for the negligence, as the process continued it became more rote, less prone to the extreme ups and downs of before and I wanted to keep this blog to update on the broad strokes of my recovery. I've kept in touch with as many and my friends and family as I could, but I guess apart of me didn't want to "jinx" the recovery by declaring absolutes on here, as I've learned, nothing can be expected. But I want everyone to know who's out there and supporting me, and it seems now as time has passed that I can finally confidently talk about my recovery without fear of it regressing, because all of you mean very much to me, as you'll see.
So, onto the news:
- Since my last post, I received a PET Scan mid-Decemeber that indicated that all of the cancer cells have died. This was extraordinary news and I finished two more chemotherapy cycles (two months) as mandated, ending that treatment in mid-February. I am grateful to everyone at the Sarcoma Oncology Center in Santa Monica for the excellent and caring treatment. I still have appointments once a month with them to flush my port-a-cath and to run blood labs. (The next is on 04/02).
- I was recommended to see a Radiologist because of the initial large size of my tumor and as is protocol for Hodgkin's lymphoma, as radiation can prevent it from coming back. We went back to UCLA at the end of February to see if I was eligible for further treatment, and I was, and they drew up a three week plan for low dosage radiation treatment from 03/09 - 03/29, wherein I'd receive treatment every weekday. And every Monday I visit with a doctor during the treatment I talk to a doctor.
- I've been going through the program with infrequent side effects, but a few have occurred such as the feeling of chest heaviness, a cough, and some skin irritation. But since the dose is low, it's nothing too lasting, and it is certainly not as debilitating as the side effects of chemotherapy. However, I've been told that the side effects of the radiation may last up to an additional month after treatment, so I am still cautious and have checked expectations regarding them.
- After my treatment is another round of scans to determine how the cancer has fared and, if well, follow-up appointments for more scans will be spread out about every three months (not including the monthly flushes and labs at the Sarcoma Oncology Center).
- My doctor at UCLA has told me that about a quarter of the mass is still there, "a sliver over my heart". but that it appears to be just scar tissue that may never go away, but should, hopefully, remain inactive.
This whole experience has been a whirlwind, and I've been extremely cautious to look away from the light at the end of the tunnel because I thought of it as irresponsible, considering the severity of the condition at the beginning. But now, as I get closer, the light is so near and so blinding that there's nowhere I can look away that it doesn't touch. All of you have been propelling me towards it, supporting me, being there, being so extremely generous, and now finally giving me the strength to see the hope at the end. Thanks to all of you I can finally hope again. And for that, I am indebted.
So, onto the news:
- Since my last post, I received a PET Scan mid-Decemeber that indicated that all of the cancer cells have died. This was extraordinary news and I finished two more chemotherapy cycles (two months) as mandated, ending that treatment in mid-February. I am grateful to everyone at the Sarcoma Oncology Center in Santa Monica for the excellent and caring treatment. I still have appointments once a month with them to flush my port-a-cath and to run blood labs. (The next is on 04/02).
- I was recommended to see a Radiologist because of the initial large size of my tumor and as is protocol for Hodgkin's lymphoma, as radiation can prevent it from coming back. We went back to UCLA at the end of February to see if I was eligible for further treatment, and I was, and they drew up a three week plan for low dosage radiation treatment from 03/09 - 03/29, wherein I'd receive treatment every weekday. And every Monday I visit with a doctor during the treatment I talk to a doctor.
- I've been going through the program with infrequent side effects, but a few have occurred such as the feeling of chest heaviness, a cough, and some skin irritation. But since the dose is low, it's nothing too lasting, and it is certainly not as debilitating as the side effects of chemotherapy. However, I've been told that the side effects of the radiation may last up to an additional month after treatment, so I am still cautious and have checked expectations regarding them.
- After my treatment is another round of scans to determine how the cancer has fared and, if well, follow-up appointments for more scans will be spread out about every three months (not including the monthly flushes and labs at the Sarcoma Oncology Center).
- My doctor at UCLA has told me that about a quarter of the mass is still there, "a sliver over my heart". but that it appears to be just scar tissue that may never go away, but should, hopefully, remain inactive.
This whole experience has been a whirlwind, and I've been extremely cautious to look away from the light at the end of the tunnel because I thought of it as irresponsible, considering the severity of the condition at the beginning. But now, as I get closer, the light is so near and so blinding that there's nowhere I can look away that it doesn't touch. All of you have been propelling me towards it, supporting me, being there, being so extremely generous, and now finally giving me the strength to see the hope at the end. Thanks to all of you I can finally hope again. And for that, I am indebted.
Wednesday, October 19, 2011
10/19/11: Great News!
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.
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.
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.
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