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.
Saturday, April 29, 2006
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!).
Friday, April 07, 2006
How the Week Went
Before I update everyone, please note that the last four digits of our home telephone number have changed. Our new home phone now ends in 9749. All the rest of the digits will remain the same. I'm sorry to change the number in the middle of all this but we wanted to change our phone service to Voice over IP and we couldn't keep our old number. I'll also send out an e-mail with the new number and if you call the old number in the next 90 days you'll get a recorded message of the change.
Jeff has been home resting and healing from the last PHP. His week started out with some pains but they have subsided. He has to have blood tests on Mondays and Thursdays to make sure his red cell, white cell, and platelet counts stay normal. By Thursday he was really dragging and very fatigued. The blood work came back showing that his white blood cell count was extremely low. I rushed home from work and gave him an injection of Neupogen which is supposed to help. He'll have to stay on the daily injections until his white blood count returns to normal. I don't know if that will be a few days or a few weeks. The protocol nurse said that he also has some anemia and may need to have a transfusion at some point. For now we are just giving him the daily Neupogen shots and some extra iron to help with the anemia.
Jeff's appetite is extremely low and he doesn't feel like eating much. He's said that he doesn't want to eat anything that requires a lot of chewing ... I think it makes eating too much like work and work wears him out fast these days. Wife #2 has been sweet enought to run for the Wendy's Milk Shakes in the middle of the day if he asks for one. Jeff explained that food just doesnt appeal to him. Not even pizza, our typical Friday night fare!
The blood sugars seem to be back to normal. Jeff hasn't taken any medicine for the hypoglycemia since he was admitted to NIH and they have been within the normal range every time he takes them....even withtout eating very much, they have remained normal (yea!).
Jeff has been home resting and healing from the last PHP. His week started out with some pains but they have subsided. He has to have blood tests on Mondays and Thursdays to make sure his red cell, white cell, and platelet counts stay normal. By Thursday he was really dragging and very fatigued. The blood work came back showing that his white blood cell count was extremely low. I rushed home from work and gave him an injection of Neupogen which is supposed to help. He'll have to stay on the daily injections until his white blood count returns to normal. I don't know if that will be a few days or a few weeks. The protocol nurse said that he also has some anemia and may need to have a transfusion at some point. For now we are just giving him the daily Neupogen shots and some extra iron to help with the anemia.
Jeff's appetite is extremely low and he doesn't feel like eating much. He's said that he doesn't want to eat anything that requires a lot of chewing ... I think it makes eating too much like work and work wears him out fast these days. Wife #2 has been sweet enought to run for the Wendy's Milk Shakes in the middle of the day if he asks for one. Jeff explained that food just doesnt appeal to him. Not even pizza, our typical Friday night fare!
The blood sugars seem to be back to normal. Jeff hasn't taken any medicine for the hypoglycemia since he was admitted to NIH and they have been within the normal range every time he takes them....even withtout eating very much, they have remained normal (yea!).
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