Saturday, February 28, 2009
One more scare
Woody just shared with me that all the "hot spot" pains that he had been feeling prior to the treatments are gone. Praise God! But...that good news wasn't the end of what he had to tell me. Something had happened to him while I was upstairs. He fell asleep in the recliner and when he woke up he had this really bad pain in his right hip. He got up and limped around and it continued to hurt very badly. He had a dreaded thought come to him: this pain was much like the pain that he had had in his shoulder...could this mean that the melanoma was now attacking his hip bone? He continued to walk around trying to ease up the pain. About an hour after the pain started bothering him, he reached in his pants pocket and found his glasses! He had slept on them! He took the glasses out. Voila! The pain is gradually leaving!!!!!!!! Whew!!!!!!!!!! He certainly gave me a "sinking feeling" when he told the story!
A corner was turned
"A corner being turned" is how Woody described the way he felt the other night after he broke out into a sweat and started feeling better. He also broke out into a sweat last night in the middle of the night--after that he said that he just felt the same--but at least he seems to be slowly climbing up and out of feeling so badly. I guess Dr. Sosman knew what he was talking about when he said that Woody would be feeling better by Wednesday when he can again enter Vanderbilt for the next round of IL-2.
At this point it does look like he plans to go back in for the next round. We know a little more this time and will know when it is time to say "enough is enough!" On the Vanderbilt site there is a way for a patient to log on and view their personal lab work results and see a graph of prior results for the same test. I can guarantee you that I will be watching Woody's creatinine levels very carefully this time--last time I didn't know what to look for till after they got too high--often I could get results of the lab work before the doctors came in--and now that I know what to watch we will have a little more leverage in deciding if he should continue or not. One of the options during the IL-2 treatments is to skip a dose and then take the next dose--so we will be ready to opt out for that also if the after effects get too much for Woody. We also know a little more of what to look for in regards to the side effects that happen within an hour or so after the infusion has finished and can hopefully stop some of them before they get started.
Today Woody walked outside and got the mail and also made his own sandwich at lunch and is now getting what he wants for supper--big improvement! Food is starting to taste better to him--although he says that lots of things still don't taste exactly right. He continues to feel very cold. But all in all he is definitely feeling better.
At this point it does look like he plans to go back in for the next round. We know a little more this time and will know when it is time to say "enough is enough!" On the Vanderbilt site there is a way for a patient to log on and view their personal lab work results and see a graph of prior results for the same test. I can guarantee you that I will be watching Woody's creatinine levels very carefully this time--last time I didn't know what to look for till after they got too high--often I could get results of the lab work before the doctors came in--and now that I know what to watch we will have a little more leverage in deciding if he should continue or not. One of the options during the IL-2 treatments is to skip a dose and then take the next dose--so we will be ready to opt out for that also if the after effects get too much for Woody. We also know a little more of what to look for in regards to the side effects that happen within an hour or so after the infusion has finished and can hopefully stop some of them before they get started.
Today Woody walked outside and got the mail and also made his own sandwich at lunch and is now getting what he wants for supper--big improvement! Food is starting to taste better to him--although he says that lots of things still don't taste exactly right. He continues to feel very cold. But all in all he is definitely feeling better.
Friday, February 27, 2009
Friday update
Woody is now finding out how I often feel--that I just can't get warm--and he was always one who would never turn on the heat as he was comfortable with it being cold in the house. Now he keeps telling me that he just can't get warm. I guess that the IL-2 has messed with his body's thermostat.
Sometime in the night last night Woody broke out in a sweat. He said after that happened he started feeling better. I guess he could have had a slight fever--but I really don't think so--I feel like it was the IL-2. But, whatever it was, he does feel a bit better today. He has done a lap or two through the house, gone up and down stairs several times during the day (rather than reserving the stairs just for coming down in the morning and going up at night), taken a shower, washed his hair, and shaved. Those activities still wore him out, but not quite as much as earlier in the week. So maybe by the time it is time for him to go back into the hospital he will be feeling much better and much stronger. I think that his coloring is better too. He is still peeling, but not as badly as earlier in the week.
A Vanderbilt nutritionist called Woody today. She was trying to make an appointment for him to come in due to the fact that he has lost weight. But he assured her that he was fine and that he was sure that once these treatments are behind him that he would be gaining his weight back. Definitely his appetite is returning. It is becoming a little less difficult to find things that appeal to him--either that or I have just figured out what to offer him! He is eating healthy foods--junk-type foods don't appeal to him--like super sweet things or super salty things.
Sometime in the night last night Woody broke out in a sweat. He said after that happened he started feeling better. I guess he could have had a slight fever--but I really don't think so--I feel like it was the IL-2. But, whatever it was, he does feel a bit better today. He has done a lap or two through the house, gone up and down stairs several times during the day (rather than reserving the stairs just for coming down in the morning and going up at night), taken a shower, washed his hair, and shaved. Those activities still wore him out, but not quite as much as earlier in the week. So maybe by the time it is time for him to go back into the hospital he will be feeling much better and much stronger. I think that his coloring is better too. He is still peeling, but not as badly as earlier in the week.
A Vanderbilt nutritionist called Woody today. She was trying to make an appointment for him to come in due to the fact that he has lost weight. But he assured her that he was fine and that he was sure that once these treatments are behind him that he would be gaining his weight back. Definitely his appetite is returning. It is becoming a little less difficult to find things that appeal to him--either that or I have just figured out what to offer him! He is eating healthy foods--junk-type foods don't appeal to him--like super sweet things or super salty things.
Thursday, February 26, 2009
FYI and Thurs. update
FYI: some points of interest that I have picked up:
1) Dr. Sosman told us on Tuesday that it was unusual to see kidney problems with melanoma patients. IL-2 is approved for use with both melanoma and kidney (renal) cancer--guess that they see kidney problems more with their kidney patients...makes sense. So...when has Woody been "usual" in this treatment?!
2) Here's how scientists make Interleukin 2 (IL-2): They transfer the gene for human IL-2 into bacteria. The bacteria then make the IL-2 protein in large quantities. These quantities can then be purified as a drug.
3) Interleukin 2 (IL-2) is administered in bolus dosing. A bolus dose is a large volume of fluid or dose of a drug given intravenously and rapidly at one time. So Woody, during his treatments, was getting 3 bolus doses in a 24 hour period. Each dose took 15 minutes to be given.
4) Interleukin 2 can't be given in a saline solution--it is given in a Dextrose 5% solution. Prior to giving the IL-2, Woody's IV drip was always changed over to the Dextrose 5% solution to flush out the line. Then they would give the IL-2 bolus with the Dextrose 5% solution which took 15 min. After the IL-2 bolus finished, it was followed for a while longer with the Dextrose 5% solution and then his drip would be switched back to the saline solution. I got to know the "drill" fairly well as I would have to push the nurse call button after the 2nd flushing of the Dextrose solution so she could switch it back to the saline.
5) IL-2 causes "Capillary Leak Syndrome," which is the cause of weight gain, swelling and low blood pressure during the treatments.
Update on Woody: Thurs., Feb. 26
Woody's main complaint at the moment is that his legs ache--which is bothering him most at night. Dr. Sosman's nurse called today to ask me a question about some paper work that they were filling out for us so I asked her what would be appropriate for him to take for these aches. She said ibuprofen--so far Woody hasn't taken any since I talked to her--perhaps at bedtime.
Woody did do a few "laps" in the house today. One "lap" = from his recliner in the family room out to the living room and back. I know that he has done at least two laps today. He also went outside for a quick look at one of our gardens in the back yard. He has also done some crossword puzzles. So I guess he has exercised his body and his mind a bit today.
1) Dr. Sosman told us on Tuesday that it was unusual to see kidney problems with melanoma patients. IL-2 is approved for use with both melanoma and kidney (renal) cancer--guess that they see kidney problems more with their kidney patients...makes sense. So...when has Woody been "usual" in this treatment?!
2) Here's how scientists make Interleukin 2 (IL-2): They transfer the gene for human IL-2 into bacteria. The bacteria then make the IL-2 protein in large quantities. These quantities can then be purified as a drug.
3) Interleukin 2 (IL-2) is administered in bolus dosing. A bolus dose is a large volume of fluid or dose of a drug given intravenously and rapidly at one time. So Woody, during his treatments, was getting 3 bolus doses in a 24 hour period. Each dose took 15 minutes to be given.
4) Interleukin 2 can't be given in a saline solution--it is given in a Dextrose 5% solution. Prior to giving the IL-2, Woody's IV drip was always changed over to the Dextrose 5% solution to flush out the line. Then they would give the IL-2 bolus with the Dextrose 5% solution which took 15 min. After the IL-2 bolus finished, it was followed for a while longer with the Dextrose 5% solution and then his drip would be switched back to the saline solution. I got to know the "drill" fairly well as I would have to push the nurse call button after the 2nd flushing of the Dextrose solution so she could switch it back to the saline.
5) IL-2 causes "Capillary Leak Syndrome," which is the cause of weight gain, swelling and low blood pressure during the treatments.
Update on Woody: Thurs., Feb. 26
Woody's main complaint at the moment is that his legs ache--which is bothering him most at night. Dr. Sosman's nurse called today to ask me a question about some paper work that they were filling out for us so I asked her what would be appropriate for him to take for these aches. She said ibuprofen--so far Woody hasn't taken any since I talked to her--perhaps at bedtime.
Woody did do a few "laps" in the house today. One "lap" = from his recliner in the family room out to the living room and back. I know that he has done at least two laps today. He also went outside for a quick look at one of our gardens in the back yard. He has also done some crossword puzzles. So I guess he has exercised his body and his mind a bit today.
Wednesday, February 25, 2009
Peeling!
One of the side effects of IL-2 is that your skin gets very dry. And when it gets so dry it starts peeling--much like it does when you have a bad sun burn. Woody looks like he has had quite a bad sunburn or a very bad case of dandruff--he leaves flakes of skin just about wherever he goes! The dry patches are on his face (even on his eyelids), scalp, neck, arms (especially the arm that is broken and in a cast most of the time), hands, and back. Earlier today he was just rolling the dry skin off one of his hands. This dryness and peeling does make him itch also. We were given Eucerin cream to put on the dry areas and that does help some--at least for a short period of time right after we put it on. But then the dry "peely" skin is back.
One of the things that Dr. Sosman told us yesterday is that we won't talk about setting a surgery date for fixing Woody's broken lower left arm until after the peeling has stopped. The peeling skin could cause an infection to set into the surgical site. Always one more thing to take into consideration! Of course Woody isn't ready to face surgery yet, anyway!
Woody is still pretty weak. He is eating better--although things still just don't taste right to him--even ice cream doesn't taste right. At the moment I want to get some calories into him so he will put on a bit of weight that he has lost--so he will have it to lose again if he does undergo this next set of treatments. We're still not talking about next week--just focusing on getting him stronger this week.
I told him that we were going to start walking laps tomorrow--from the family room to the living room and back! He needs to start doing some sort of exercising to get his "get-up-and-go" back!
One of the things that Dr. Sosman told us yesterday is that we won't talk about setting a surgery date for fixing Woody's broken lower left arm until after the peeling has stopped. The peeling skin could cause an infection to set into the surgical site. Always one more thing to take into consideration! Of course Woody isn't ready to face surgery yet, anyway!
Woody is still pretty weak. He is eating better--although things still just don't taste right to him--even ice cream doesn't taste right. At the moment I want to get some calories into him so he will put on a bit of weight that he has lost--so he will have it to lose again if he does undergo this next set of treatments. We're still not talking about next week--just focusing on getting him stronger this week.
I told him that we were going to start walking laps tomorrow--from the family room to the living room and back! He needs to start doing some sort of exercising to get his "get-up-and-go" back!
Tuesday, February 24, 2009
Here we go again?
We are back from another long day at Vanderbilt--left the house at 10:30am and didn't return till 5pm. It's hard to be gone for such a long time when you don't feel well--but Woody made it there and back and he is now back in his recliner.
We probably spent more time in waiting rooms than with the doctor--but that's the way it goes so often with doctor visits. Dr. Sosman is encouraging Woody to continue with the next set of 5 days of treatments. Left up to Woody at the moment he would pass on taking any more. Dr. Sosman inferred that more positive results are seen when infusions are taken in both of the 5 day time periods. Dr. Sosman was sure that Woody would be feeling much stronger by next week! Woody looked at him rather questioningly! And, if labs are pretty close to normal then Woody would be given a green light for more IL-2. So we are to go back to see Dr. Sosman next Tuesday (Mar. 3) for him to check Woody out and make sure that he is strong enough. Woody will have blood work done again that day. Then if everything checks out ok... AND IF Woody is agreeable to it...Woody will be checking back into Vandy the next day (Wed., Mar. 4) to under go the second set of Interleukin 2 treatments.
This is the first time that any "magical" number of infusions has been said to us. But, today, Dr. Sosman told us that they like to get as close to 20 infusions as possible. I'm not sure that Woody is up to another 8 or not! He had really about made up his mind that he wasn't going back for any more. Again, time will tell.
I just checked his lab report online and the creatinine levels are almost back to normal. Praise God!
The doctors encouraged him to keep drinking lots and also eating--as he has lost weight--he gained in the hospital due to water retention from all the fluids pumped into him, but has now lost that weight plus more. I told them that I was "trying" to get him to eat...but that it was difficult to tempt him these days! They realize that things just don't taste right to him.
So prayer suggestions...I guess...for wisdom...both for the doctors and for us; for Woody's strength to return; for his body to continue to return to normal levels; and for peace of mind for Woody in the decision that looms before him.
We probably spent more time in waiting rooms than with the doctor--but that's the way it goes so often with doctor visits. Dr. Sosman is encouraging Woody to continue with the next set of 5 days of treatments. Left up to Woody at the moment he would pass on taking any more. Dr. Sosman inferred that more positive results are seen when infusions are taken in both of the 5 day time periods. Dr. Sosman was sure that Woody would be feeling much stronger by next week! Woody looked at him rather questioningly! And, if labs are pretty close to normal then Woody would be given a green light for more IL-2. So we are to go back to see Dr. Sosman next Tuesday (Mar. 3) for him to check Woody out and make sure that he is strong enough. Woody will have blood work done again that day. Then if everything checks out ok... AND IF Woody is agreeable to it...Woody will be checking back into Vandy the next day (Wed., Mar. 4) to under go the second set of Interleukin 2 treatments.
This is the first time that any "magical" number of infusions has been said to us. But, today, Dr. Sosman told us that they like to get as close to 20 infusions as possible. I'm not sure that Woody is up to another 8 or not! He had really about made up his mind that he wasn't going back for any more. Again, time will tell.
I just checked his lab report online and the creatinine levels are almost back to normal. Praise God!
The doctors encouraged him to keep drinking lots and also eating--as he has lost weight--he gained in the hospital due to water retention from all the fluids pumped into him, but has now lost that weight plus more. I told them that I was "trying" to get him to eat...but that it was difficult to tempt him these days! They realize that things just don't taste right to him.
So prayer suggestions...I guess...for wisdom...both for the doctors and for us; for Woody's strength to return; for his body to continue to return to normal levels; and for peace of mind for Woody in the decision that looms before him.
Monday, February 23, 2009
Monday
Woody is still feeling puny. I thought this morning that he was much better, but he faded as the day continued.
We go back to see Dr. Sosman tomorrow. It will be good to hear what Dr. Sosman has to say and also to get more labs done so we can make sure that Woody's creatinine levels are going down.
So...I'll be giving you a doctor report tomorrow.
We go back to see Dr. Sosman tomorrow. It will be good to hear what Dr. Sosman has to say and also to get more labs done so we can make sure that Woody's creatinine levels are going down.
So...I'll be giving you a doctor report tomorrow.
Subscribe to:
Posts (Atom)