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.
Wednesday, July 27, 2011
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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