I'm sorry for the delay in posting - the blogger website had some sort of spam block on our site/posting. Here is the entry I made Friday but could not post.
Just a quick note to let all our friends and family know how today's clinic visit went. Drs. Pingpank and Royal think the spot on Jeff's brain is the result of bleeding and NOT a tumor. They believe that it is not an active bleed but the result of something old that may have bleed when Jeff's platelets were low. We will be repeating the tests again in one month and we'll go from there. We are still talking about surgery but can't move until the second round of testing confirms things. Looks like we'll get to camp for Memorial Day after all.
FYI - we camped at Point Lookout State Park this weekend...our ingural camping trip for the 2006 season (a little late but great none the less).
Friday, May 12, 2006
Saturday, April 29, 2006
Change in Plans
This week was going extremely well for Jeff...he returned to work on a full time basis and his energy levels have been great...but read on. They stopped Jeff's Neupogen (helps make white blood cells) last week and all of his blood work was back to normal. We were supposed to go to NIH for testing and clinic visit last week but they postponed the tests/visit until this week beause of the problems Jeff had getting back to normal this time. This round of chemo took a lot out of Jeff and unfortunately they let his blood levels get too low before they got him back on track. Looking back,we think they should have ordered an out of cycle blood test when things started to decline. By the time Jeff had the next regularly scheduled test four days from the previous one, things were pretty low. Luckly he's a strong man and this too he fought back from.
As for this week's tests and visits, they have added a new wrinkle. Jeff had several tests this week including the ususal MRI and CT Scans, however, this time they added an Octreotide Scan. This was a nuclear medicine study where they inject a radioactive agent that is attracted to the tumors. When they take the "pictures" it lights up the places where the tumors are still hiding. The results of this test showed that there is still a fair amount of tumor activity in the liver and from the sounds of the physicians, I think it is either much more than they would like to see or they had hoped for no liver tumor activity after these two treatments.
The Octreotide scan also showed something in Jeff's brain that they weren't expecting. Therefore Jeff has to have an MRI for additional diagnostic testing. The doctors believe that it may be a false positive but cannot confirm that until the MRI is done. All other testing was normal except for a slightly elevated insulin level. As you may remember, the tumors produce insulin so this tumor activity is still reaking some havoc on Jeff's insulin/blood sugar. However, Jeff hasn't had to take any diazoxide since the last round of chemo and even with a low appetite, his blood sugars have been wonderfully normal.
As a result of the Octreotide Scan, the surgery that Jeff was scheduled for on May 17th has been posponed. He is scheduled for an MRI of the brain on May 9th and we go back for a clinic visit on May 12th. It is the May 12th visit that we'll know the results of the MRI and what the next course of treatment will be.
Oh, did I mention that we met Dr. Richard Royal during our clinic visit on Friday. Dr. Royal is the surgeon who will be doing the surgery on the pancreas...eventually... we hope. Both Jeff and I really liked him and his bedside manner. He was very straight forward, explained things very well, and answered all of our questions.
For now, all we can do is wait and let Jeff get his strength back. He' has lost over 30 pounds in the last four months and the delay will give him time to recover a bit before the next stage. Right now we just don't know if the next step will be....surgery, another round of chemo, or something yet to be determined.
As for this week's tests and visits, they have added a new wrinkle. Jeff had several tests this week including the ususal MRI and CT Scans, however, this time they added an Octreotide Scan. This was a nuclear medicine study where they inject a radioactive agent that is attracted to the tumors. When they take the "pictures" it lights up the places where the tumors are still hiding. The results of this test showed that there is still a fair amount of tumor activity in the liver and from the sounds of the physicians, I think it is either much more than they would like to see or they had hoped for no liver tumor activity after these two treatments.
The Octreotide scan also showed something in Jeff's brain that they weren't expecting. Therefore Jeff has to have an MRI for additional diagnostic testing. The doctors believe that it may be a false positive but cannot confirm that until the MRI is done. All other testing was normal except for a slightly elevated insulin level. As you may remember, the tumors produce insulin so this tumor activity is still reaking some havoc on Jeff's insulin/blood sugar. However, Jeff hasn't had to take any diazoxide since the last round of chemo and even with a low appetite, his blood sugars have been wonderfully normal.
As a result of the Octreotide Scan, the surgery that Jeff was scheduled for on May 17th has been posponed. He is scheduled for an MRI of the brain on May 9th and we go back for a clinic visit on May 12th. It is the May 12th visit that we'll know the results of the MRI and what the next course of treatment will be.
Oh, did I mention that we met Dr. Richard Royal during our clinic visit on Friday. Dr. Royal is the surgeon who will be doing the surgery on the pancreas...eventually... we hope. Both Jeff and I really liked him and his bedside manner. He was very straight forward, explained things very well, and answered all of our questions.
For now, all we can do is wait and let Jeff get his strength back. He' has lost over 30 pounds in the last four months and the delay will give him time to recover a bit before the next stage. Right now we just don't know if the next step will be....surgery, another round of chemo, or something yet to be determined.
Monday, April 17, 2006
Still Recovering
It's been a busy couple of weeks. Jeff's recovery is extremely slow this time. He ended up back in the hospital last Monday because his platelet count was EXTREMELY low. After 24 units of platelets they decided to keep him overnight and give him two units of red blood too. All that and double the dose of Neupogen (for the low white blood cell counts) helped get things back to normal and he was allowed to come home on Tuesday. I think he made the hemotology record books with counts that low.
Jeff was feeling pretty much like s..t for the last 10 days but things are starting to improve. We actually went out to dinner tonight after dropping the kids off at their friend's house. What a treat that was. I can't tell you the last time the two of us dined alone.
Jeff had his regular blood work done today and we are able to stop the Neupogen but his platelet count is low again. I don't have to give him the injections anymore (one per arm each night was starting to get old) but they want to monitor what's happening with the platelets for a couple more days. They, the wonderful doctors at NIH, have officially cancelled Jeff's follow up tests scheduled this coming Thursday and his clinic appointment this Friday. I think they want Jeff to have a little more time to recover before even considering surgery. I couln't agree with them more. This round took it's toll on him physicially and emotionally.
Please keep your get well wishes and cards coming. They have been wonderful to help lift Jeff's spirits and remind him of all your love and support. Even the kindergarden class at J.C. Magill Elementery School in Loganville, Georgia has adopted Jeff and sent him some of the most colorful and uplifting messages we've seen (Thanks Ms. Connie & Class of 2018!).
Jeff was feeling pretty much like s..t for the last 10 days but things are starting to improve. We actually went out to dinner tonight after dropping the kids off at their friend's house. What a treat that was. I can't tell you the last time the two of us dined alone.
Jeff had his regular blood work done today and we are able to stop the Neupogen but his platelet count is low again. I don't have to give him the injections anymore (one per arm each night was starting to get old) but they want to monitor what's happening with the platelets for a couple more days. They, the wonderful doctors at NIH, have officially cancelled Jeff's follow up tests scheduled this coming Thursday and his clinic appointment this Friday. I think they want Jeff to have a little more time to recover before even considering surgery. I couln't agree with them more. This round took it's toll on him physicially and emotionally.
Please keep your get well wishes and cards coming. They have been wonderful to help lift Jeff's spirits and remind him of all your love and support. Even the kindergarden class at J.C. Magill Elementery School in Loganville, Georgia has adopted Jeff and sent him some of the most colorful and uplifting messages we've seen (Thanks Ms. Connie & Class of 2018!).
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