Real Quick Update

Not much new to report, but my blood pressure has continued to stay low. I've been taking the Sutent and the doctor said that was more than likely the culprit. And although high blood pressure isn't necessarily a good thing, there was an article a nurse found in an oncology journal that did a study and said that patients who obtained a systolic blood pressure reading above 140 (which I had) generally received better results with the Sutent! So hopefully that's a good sign then! I only have 6 more radiation treatments - YAY!!!!! They are still going good, just wearing me out. I'm tired a lot, but that's more than likely because of the radiation. My last treatment is next wednesday, July 28, which is also when I go see my oncologist in UAB next. And then the following week I'm off to MD Anderson. But for now, that's about it. Thanks to all of you for your thoughts and prayers and please keep them coming - we've still got a long way to go!

Blood Pressure lowered

Well, my blood pressure has come down since this weekend. I checked it everyday and all weekend it ran about 130/105, if not slightly higher. Sunday I had a pretty bad headache, which could potentially be from the raised blood pressure. I returned to the doctor Tuesday for radiation treatment and my blood pressure had come down to 121/88!! We're not sure what might have caused it to lower itself, but it did! And yesterday (wednesday) it was 131/92. So its come down significantly. Its still not quite as low as usual so they said to keep monitoring it.

I returned to UAB yesterday for a quick appointment with my endocrinologist. Since they've started radiation and they're radiating the one working adrenal gland I have, they were concerned about further suppressing it and my endocrinologist just wanted to check in with me and see how things were going. He switched my steroid from Cortef to Prednisone, simply because I take the Cortef in the AM and afternoon and keep forgetting to take the afternoon dose, whereas the prednisone is once a day and much easier to remember.

One last thing... I talked to MD Anderson and I am going out to Houston in August to be evaluated for a clinical trial. They said I would be a good candidate so I'm headed out there to visit my dad and at the same time see if I can get on this trial! Please pray that I qualify!

Quick Update

Nothing really new to report, but I have some good news and some potentially not so good news... The good news is I got a letter from our insurance that they will cover the Sutent for me!! Praise the Lord!! I'm not sure how to go about getting the medicine (through my local pharmacy or a specialty pharmacy) but at least it will be covered! I'm waiting to hear from my doctor the next step. The potentially not so good news is that my blood pressure has been really high all week and we're not sure yet what's causing it to be. Monday it was 130/97, which is high in general, especially for me. I started getting a headache monday and it hasn't really gone away. So yesterday (wednesday) I went up to Walgreens and had them check it and it was still a little high at 113/91. I talked to my oncologists' nurse about it and she said to check it everyday this week twice a day and keep a log of it and if it's still up at the beginning of next week, let them know. Then today, I still had a slight headache so after my radiation treatment today, I had the nurse check it and it was up to 141/104! She then checked both arms while I was sitting, standing, and laying down and all 6 times it averaged about 135/103. She paged my radiologist and talked to him for a few minutes and he didn't think it wasn't anything to be too concerned about yet, but just to be safe he issued for me to have an MRI. So about lunchtime today, I had an MRI done at the hospital there in Alexander City. They called me about 2PM and told me there was nothing abnormal about the MRI and everything seemed fine, just to keep monitoring my BP and see where it is first of the week. I'm not really worried about this yet, but I'm just not sure what could be raising it. I've never had high BP, even during my recovery time from surgery or any of the other meds I've been on. Hopefully it will go down on its own this weekend and it will be nothing to worry about.

Radiation Began

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.

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!!

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!

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.