I started radiation treatments yesterday, Monday June 28. I will have a total of 22 treatments, monday through friday so I will finish up on July 28, unless something come up or happens. The treatments itself aren't bad at all. Once they pull me back to the radiation room, they lay me down onto the mold they created for my head, shoulders, and arms and line me up with the machine. Initially, they used sharpie marks to mark the spots they use to line me up each day. Yesterday after my treatment, however, they used an actual tattoo needle and permanently tattooed the 3 marks on my torso. They are only the size of freckles so they are hardly noticeable, but they are permanent. The treatment only takes about 15-20 minutes and they shoot the radiation beams from 9 different angles that go most of the way around my body. I met with the radiation doctor after my first treatment just to go over a few things. He said I shouldnt have any ill side effects from radiation. After a few weeks, I may become more tired (which is nothing new) or have slight diarrhea, but nothing more severe than that. They also gave me some Utterly Smooth cream to apply to the radiation sights if the skin becomes dry or irritated. I've had 2 treatments and so far so good! Only 20 more to go...
On another note, my oncologist at UAB has been talking back and forth with the doctor I saw at MD Anderson last October. My doctor wants me to go out there again and be evaluated by MD Anderson and hopefully get another game plan in case the Sutent doesn't work. She doesnt want me to have a significant lapse in treatments so she wants something set in motion because she's running out of options. And from my understanding, they have what they're calling a "Phase I Trial" at MD Anderson for adrenal cancer that they want me to be evaluated for. I think it's a clinical trial of some sort, I'm just not sure yet. We're trying to coordinate my radiation schedule with a visit to Houston to visit my family at the end of July so hopefully I'll be able to get an appt with MD Anderson while I'm down there. But I'll let everyone know as soon as something is set in place.
Tuesday, June 29, 2010
Tuesday, June 22, 2010
Radiation Scheduled
Carrie here...
I met with my radiology oncologist yesterday in Alexander City yesterday afternoon. Nothing major came out of the visit. They had to scan me (again) to make an image to use for treatment placement and they used lasers to mark 3 spots on my torso so they know where to target the radiation. They also made a mold of my upper body that they'll use for each treatment. The mold will hold me in the same position each time. It was kind of like a glorified bean bag that inflated to fit my shoulders, head, and arms. My doctor will work on getting my treatment plan together the rest of the week. I go back this thursday - by then, he'll have the plan together and he'll just make sure everything is lined up correctly. And if nothing changes, I start treatments next Monday, June 28. He did say he wants to give me the most radiation possible since the tumor is still somewhat small and localized so he's now thinking I'll do treatments for possibly 15-20 days (monday-friday) instead of the 10-12 he originally said. But he hopes to have all of that figured out by the end of this week.
On a good note, I did get my disability extended through July 20 at work! Treatments may go longer than that, but it's a relief that I won't have to worry about that until after the 20th.
I'll let everyone know if anything changes. Otherwise, I'll let you know how it goes Monday!!
I met with my radiology oncologist yesterday in Alexander City yesterday afternoon. Nothing major came out of the visit. They had to scan me (again) to make an image to use for treatment placement and they used lasers to mark 3 spots on my torso so they know where to target the radiation. They also made a mold of my upper body that they'll use for each treatment. The mold will hold me in the same position each time. It was kind of like a glorified bean bag that inflated to fit my shoulders, head, and arms. My doctor will work on getting my treatment plan together the rest of the week. I go back this thursday - by then, he'll have the plan together and he'll just make sure everything is lined up correctly. And if nothing changes, I start treatments next Monday, June 28. He did say he wants to give me the most radiation possible since the tumor is still somewhat small and localized so he's now thinking I'll do treatments for possibly 15-20 days (monday-friday) instead of the 10-12 he originally said. But he hopes to have all of that figured out by the end of this week.
On a good note, I did get my disability extended through July 20 at work! Treatments may go longer than that, but it's a relief that I won't have to worry about that until after the 20th.
I'll let everyone know if anything changes. Otherwise, I'll let you know how it goes Monday!!
Tuesday, June 15, 2010
Time for Radiation
Carrie speaking again! I went to UAB today and met with the radiology oncologist today to discuss the possibililty of radiation. I talked to 3 different doctors and they all came to the conclusion that radiation is the route to go to hopefully take care of the discomfort/pain I'm having. They reviewed all my previous scans and it appears that the large tumor in my left adrenal gland is pressing against a major blood vessel (cant remember what its called) that branches off to several different areas in the abdominal area. They think the pressure on this blood vessel is what's causing my discomfort, simply because it branches off to so many different areas. They hope that by radiating the areas where the pressure is being applied, they can relieve the pain. This radiation is NOT going to be done in hopes of a cure, it will simply be done to alleviate the pressure. They said the tumor is small enough and localized enough to safely radiate it without having to worry about doing any damage to any surrounding organs. They will be giving me a mild to moderate dose of radiation over the course of about 10-12 consecutive days. Since it's not being done as a cure, they aren't going to give me a full scale radiation dosage because there is no need to put my body through that.
So here's the plan so far... UAB actually has a clinic that they operate out of to do radiation in Alexander City, which is only about 35-45 minutes away from Auburn. So I can actually get the same exact treatment there that I would get at UAB, but much closer!!! I should get a call tomorrow with an appointment time next Monday to meet with the doctor again in Alex City. They'll use their radiation machine to scan me (again) and do x-rays to pinpoint exactly the spots they'll radiate. They'll also make a mold to fit my body in the position I'll get treatment in to make sure my body is in the same position for all the treatments. Once they get all that done and figure out exactly where to radiate, I'll start treatments the week of June 28. That's about all I know right now, but I'll keep everyone updated after my appt next monday.
As for the expensive Sutent, I'm still waiting to hear from my oncologist about getting it covered, but she said not to expect anything until this friday so we're still waiting...
Please keep us in your prayers! The Lord works in mysterious ways and the power of prayer is amazing!
So here's the plan so far... UAB actually has a clinic that they operate out of to do radiation in Alexander City, which is only about 35-45 minutes away from Auburn. So I can actually get the same exact treatment there that I would get at UAB, but much closer!!! I should get a call tomorrow with an appointment time next Monday to meet with the doctor again in Alex City. They'll use their radiation machine to scan me (again) and do x-rays to pinpoint exactly the spots they'll radiate. They'll also make a mold to fit my body in the position I'll get treatment in to make sure my body is in the same position for all the treatments. Once they get all that done and figure out exactly where to radiate, I'll start treatments the week of June 28. That's about all I know right now, but I'll keep everyone updated after my appt next monday.
As for the expensive Sutent, I'm still waiting to hear from my oncologist about getting it covered, but she said not to expect anything until this friday so we're still waiting...
Please keep us in your prayers! The Lord works in mysterious ways and the power of prayer is amazing!
Saturday, June 12, 2010
Latest Scan Results
FYI: This is Carrie again updating for Jason...
We went to UAB yesterday (Friday) for blood work, CT scan, and to meet with my doctor. And We actually got better news than we were expecting. After last weeks scare in the ER, we were already prepared for some of the news we received yesterday and were actually expecting much worse. My blood work came back fine - none of my numbers were in any danger at all. The CT scan showed where the main tumor, which is in my left adrenal gland grew about 1-1.5 cms since last scan, which isn't that bad considering the size of it. The scan showed the spot in my vena cava hasn't grown (Praise the Lord!!) and staying stable. They did, however, find one small new spot close to my adrenal gland that is new, but the dr said it's so small, they aren't concerned about it too much. She is concerned though that there is a new spot. Even though it's a small spot, it means the chemotherapy isn't completely working and my body is resisting it. So... she has decided to change treatment plans again. For right now, I am no longer doing chemotherapy infusions. There is a capsule called Sutent that is typically used in renal (kidney) cancer that has been shown to work in a few adrenal cancer cases. I will take it for 4 weeks on, 2 weeks off, then repeat. This medicine differs in chemotherapy in the fact that chemo tries to actually shrink the tumor, where as this medicine tries to simply keep it from growing. **My dr did say however in one of those cases, the tumor shrunk 30% so maybe it will still shrink it!!** The only issue is this medicine is VERY expensive and hard to get covered. She's pretty positive that the insurance will deny coverage, after which point she said she will go directly to the manufacturer to try and get it covered. But overall, yesterday's report was better than we had hoped so praise the Lord.
As you know, I had some discomfort last week leading up to my visit to the ER. They didn't find anything out of the ordinary during that visit, but I still continued to have some mild to moderate discomfort/pain since then. It has mostly been in my abdomen, but also started to migrate to my right side and around to my back. It isn't too bad in the morning, but as the day progresses and I move around and am more active, it starts to bother me in the early evening. After the scans yesterday, my dr isn't sure where the pain is coming from, since nothing showed up on the scan that would indicate the problem. So, she gave me a RX for a pain patch called duragesic to take and she referred me to an radiology oncologist in Birmingham. She's hopeful that he can possibly pinpoint the pain and radiate it to eliminate it. She said it could be just a nerve is getting hit at the right spot to cause it, but she really doesn't know. I'm going to UAB next Tuesday June 15 to see him and see what he says so we'll keep you posted.
Thank you to everyone who has kept us in your prayers. We can never thank you enough for uplifting us and keeping us in your thoughts.
We went to UAB yesterday (Friday) for blood work, CT scan, and to meet with my doctor. And We actually got better news than we were expecting. After last weeks scare in the ER, we were already prepared for some of the news we received yesterday and were actually expecting much worse. My blood work came back fine - none of my numbers were in any danger at all. The CT scan showed where the main tumor, which is in my left adrenal gland grew about 1-1.5 cms since last scan, which isn't that bad considering the size of it. The scan showed the spot in my vena cava hasn't grown (Praise the Lord!!) and staying stable. They did, however, find one small new spot close to my adrenal gland that is new, but the dr said it's so small, they aren't concerned about it too much. She is concerned though that there is a new spot. Even though it's a small spot, it means the chemotherapy isn't completely working and my body is resisting it. So... she has decided to change treatment plans again. For right now, I am no longer doing chemotherapy infusions. There is a capsule called Sutent that is typically used in renal (kidney) cancer that has been shown to work in a few adrenal cancer cases. I will take it for 4 weeks on, 2 weeks off, then repeat. This medicine differs in chemotherapy in the fact that chemo tries to actually shrink the tumor, where as this medicine tries to simply keep it from growing. **My dr did say however in one of those cases, the tumor shrunk 30% so maybe it will still shrink it!!** The only issue is this medicine is VERY expensive and hard to get covered. She's pretty positive that the insurance will deny coverage, after which point she said she will go directly to the manufacturer to try and get it covered. But overall, yesterday's report was better than we had hoped so praise the Lord.
As you know, I had some discomfort last week leading up to my visit to the ER. They didn't find anything out of the ordinary during that visit, but I still continued to have some mild to moderate discomfort/pain since then. It has mostly been in my abdomen, but also started to migrate to my right side and around to my back. It isn't too bad in the morning, but as the day progresses and I move around and am more active, it starts to bother me in the early evening. After the scans yesterday, my dr isn't sure where the pain is coming from, since nothing showed up on the scan that would indicate the problem. So, she gave me a RX for a pain patch called duragesic to take and she referred me to an radiology oncologist in Birmingham. She's hopeful that he can possibly pinpoint the pain and radiate it to eliminate it. She said it could be just a nerve is getting hit at the right spot to cause it, but she really doesn't know. I'm going to UAB next Tuesday June 15 to see him and see what he says so we'll keep you posted.
Thank you to everyone who has kept us in your prayers. We can never thank you enough for uplifting us and keeping us in your thoughts.
Saturday, June 5, 2010
Quick Update - MUCH better
FYI: This is Carrie updating Jason's blog. It just seems easier that way sometimes :) I am doing MUCH better than thursday night. I went to bed around 4 AM friday morning and took some pain meds and that seemed to knock out my horrific headache and my fever. Jason got home around 11:30 or so, which is when I finally got out of bed and I could already tell I was having a much better day. I took it easy, but never got a temperature above 98.4 all day. I still feel somewhat run down, but overall, so much better. I talked to my doctors office friday afternoon and gave them the update and they said I was good to go and still plan on going up next friday June 11 for my CT scan and appointment with my oncologist. And I am cleared to travel to Vegas as long as I'm careful so unless something drastic happens, we're leaving tomorrow morning for 4 days in the desert! Thanks to all of you for your prayers and we'll continue to keep you updated :)
Friday, June 4, 2010
Little Bit of a Scare
Carrie has had a rough last couple of days. I went out of town to Atlanta on Wednesday to present at a conference for the Vet School. When I left Carrie Wednesday morning, she was having slight stomach problems, mainly feeling bloated and her abdomen was just tender to the touch. She said it kind of reminded her of how her stomach was feeling last summer before everything was diagnosed, but we were hoping it would go away quickly. Throughout the day, she starting experiencing a little stiffness in her chest and soreness in her back. She took a couple of pain medications and went to bed early wednesday night, and when she woke up thursday, her stomach was feeling much better, but her body was aching and she was running a temperature of around 99.0. She rested all day and her friend Pat from work called to check on her and when she found out Carrie wasn't feeling spectacular, she insisted on going over to our house, cooking her homemade chicken soup, and taking care of her (Thank you Pat!!) Carrie still felt cruddy and her temp got up to 100.1 a couple of different times. Her oncologist had told her if her temp ever got about 100.5 to call her or the nurse and even though it wasn't quite that high, Carrie went ahead and called to tell them what's going on. She finally heard back from the nurse just after 5 PM and he said Carrie needed to go to the ER to get checked out because of her symptoms and just to be sure she didn't have any kind of infection or anything else wrong. I was still in ATL so Pat took Carrie to the ER about 6:30 and got her signed in and registered (they gave her a hospital mask as soon as she walked in). She got called back to a room about 8:30 and luckily she had a private room. They quickly started an IV and took some blood and had her collect a urine sample. They also came in to do a chest XRAY to see if maybe she had pneumonia. Those tests took about 2 hours to get the results back, all of which came back okay. No pneumonia!! And her counts were fairly decent. Not great, but for someone going through chemo, they were at a healthy level. After the doctor came in to see her around 9:45, he said they probably would issue a CT scan based on her history to see if the tumor had developed somewhere that was causing the problems. THEN around 10:45 PM a radiology tech came in with a 30 oz. cup of lemonade tasting contrast dye to take for the CT scan. He told her to drink the whole cup (which Carrie said tasted HORRIBLE) then it would have to sit in her system for about 1 & 1/2 hour before they could do the scan. Soooo..... they finally pulled her to get the scan around 12:15 AM. Then she had to wait about another hour to get the results. The doctor came in and said the scan didn't show anything they weren't already expecting and didn't appear to be causing any problems that could be causing Carrie's symptoms. He wanted to go ahead and call her oncologists' office and speak to the on-call doctor just to make sure they didn't need to do anything else before they let her go. So FINALLY around 2:15 AM or so, they came back and said they talked to the on-call doctor and said they didn't see any reason for her to have to stay or be admitted to the hospital so she could finally go home. The on-call doctor in Bham said he would have her oncologist call friday afternoon to check on her and see how she's doing.
I'm back from Atlanta now and Carrie seems to be having a much better day. She took some more pain medication last night before she went to bed and that seemed to take care of her headache and a lot of her other pain. Her temp was 97.3 this morning so no fever so far! Overall, she's feeling much better today. We're thinking maybe she just got a virus that was causing her symptoms, but she seems to be improving. So after spending 8 hours in the ER to find out nothing was particularly wrong, at least now we have somewhat of a peace of mind. We'll keep you updated if anything changes or if her doctor says anything different.
I'm back from Atlanta now and Carrie seems to be having a much better day. She took some more pain medication last night before she went to bed and that seemed to take care of her headache and a lot of her other pain. Her temp was 97.3 this morning so no fever so far! Overall, she's feeling much better today. We're thinking maybe she just got a virus that was causing her symptoms, but she seems to be improving. So after spending 8 hours in the ER to find out nothing was particularly wrong, at least now we have somewhat of a peace of mind. We'll keep you updated if anything changes or if her doctor says anything different.
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