Cycle number 14 was done last Friday. This was the last triple whammy and as has been the case, we still struggled with nausea Friday and Saturday. We tried the Aloxi and Zofran combo this time thinking that it might work but it didn’t quite do the job. By Saturday, Tim was able to keep some soup down and by Sunday was back to eating again. It was a quick recovery.
Tim concentrated on gaining weight the previous week and was able to get about 2 lbs on. Now it’s counts this Friday to see where his neutrophil count is and to see if platelets have started to recover. Tim did not get a shot of Neulasta this time. The logic is that since he doesn’t have another chemo to go through, there is no need to make sure his neutrophil count recovers in time for the next dose. One benefit of not getting the shot is that he avoids the bone pain that results when his bone marrow is boosted with the Neulasta. The disadvantage of course is that he will likely become neutropenic. Hopefully that does not lead to a hospital admission because of a resultant fever. We’ll have to monitor that closely for the next week.
Graduation is this week. For seniors school has been out since Friday. Tim spent his whole senior year undergoing chemo treatment. We are all glad that this phase is now over.
After this week, Tim will get a few weeks off and then we’ll go in for a series of MRI scans followed by the removal of the port. In between those, we’ll be on our way to Connecticut for the American Le Mans Series race at Lime Rock Park. This was Tim’s Make-A-Wish request and I’m glad he’ll be able to experience a trip, do some touring, and watch the car race.
--bob
Wednesday, May 30, 2007
Wednesday, May 23, 2007
Last Treatment This Week!
This Friday will be Tim’s last chemo treatment. Hopefully the Aloxi/Zofran combo will work for the nausea and he’ll just have the normal two-three day recovery where he’s just tired. Then the high school graduation ceremony is on Thursday. Even with the one week total delay, he should still be able to attend graduation. It is such an exciting time to be done with chemo and be graduating from high school.
Following in future weeks, we’ll have to schedule the removal of the port and Tim will have to have a series of MRI scans to be jointly shared among the oncologist, radiation oncologist and neurosurgeon. Over the last year, the syrinx hasn’t shown up on CT scans but we have to go back and look closely with MRI rather than CT scans to see if the syrinx is gone, hence the reason to involve the neurosurgeon again. Hopefully, the syrinx is gone. Tim still remains symptom free in that regard.
The port removal will be an outpatient surgery similar to the kind used to put it in. A few internal stitches and some super-glue and he should be good to go.
The port of course is necessary since the chemo drugs would corrode a small vein. The port actually goes in through the jugular vein and almost all the way to the heart where lots of volume quickly dilutes the drugs. The port requires preparation to use by pushing saline through to clear the line and then when the port is de-accessed to again flush it and leave a heparin mix behind in the line. This process is most distasteful to Tim since that quick saline push and the heparin instantly cause him to have a metallic taste in his mouth. It goes away quickly, but every time it’s there. We’ve used all sorts of masking candy from sour worms to Skittles to Mike ’n Ikes. Recently though Tim has been able to just get through the taste since it is short lived. He really doesn’t like any of those candies anymore.
However, I am happy to report that he’s eating ice cream again. For a long time, he wasn’t thrilled with ice cream and avoided it, but perhaps there has been additional improvement in his taste recovery. The last several treatment spaces he has been trying to add some weight and has been at least successful in maintaining weight. He thinks this week he’ll be a few pounds up.
And he now has a wisp of hair. Very light and very thin but it’s there. We expect it to fall out once more but it’s a good sign that his hair wants to come back quickly. Hopefully in 4 weeks or so after the last round of chemo, the hair will start to come in again.
Tim’s bone marrow will also appreciate the end of chemo. His ability to produce blood cells has been depressed for so long. Even using Neulasta to increase white cell production, the bone marrow is just burned out. He’ll get one more dose of Neulasta to try and minimize the number of days where his neutrophil count is zero. That’s about all it does now. So starting next week, we’ll work on nutrition to rebuild.
Following in future weeks, we’ll have to schedule the removal of the port and Tim will have to have a series of MRI scans to be jointly shared among the oncologist, radiation oncologist and neurosurgeon. Over the last year, the syrinx hasn’t shown up on CT scans but we have to go back and look closely with MRI rather than CT scans to see if the syrinx is gone, hence the reason to involve the neurosurgeon again. Hopefully, the syrinx is gone. Tim still remains symptom free in that regard.
The port removal will be an outpatient surgery similar to the kind used to put it in. A few internal stitches and some super-glue and he should be good to go.
The port of course is necessary since the chemo drugs would corrode a small vein. The port actually goes in through the jugular vein and almost all the way to the heart where lots of volume quickly dilutes the drugs. The port requires preparation to use by pushing saline through to clear the line and then when the port is de-accessed to again flush it and leave a heparin mix behind in the line. This process is most distasteful to Tim since that quick saline push and the heparin instantly cause him to have a metallic taste in his mouth. It goes away quickly, but every time it’s there. We’ve used all sorts of masking candy from sour worms to Skittles to Mike ’n Ikes. Recently though Tim has been able to just get through the taste since it is short lived. He really doesn’t like any of those candies anymore.
However, I am happy to report that he’s eating ice cream again. For a long time, he wasn’t thrilled with ice cream and avoided it, but perhaps there has been additional improvement in his taste recovery. The last several treatment spaces he has been trying to add some weight and has been at least successful in maintaining weight. He thinks this week he’ll be a few pounds up.
And he now has a wisp of hair. Very light and very thin but it’s there. We expect it to fall out once more but it’s a good sign that his hair wants to come back quickly. Hopefully in 4 weeks or so after the last round of chemo, the hair will start to come in again.
Tim’s bone marrow will also appreciate the end of chemo. His ability to produce blood cells has been depressed for so long. Even using Neulasta to increase white cell production, the bone marrow is just burned out. He’ll get one more dose of Neulasta to try and minimize the number of days where his neutrophil count is zero. That’s about all it does now. So starting next week, we’ll work on nutrition to rebuild.
No Treatment, Just Counts
We’re getting near the end of the treatment now and between the May 4th treatment and the final one, there are just checkup visits. However, as has been the case, Tim’s platelet count was low at the one week out checkup. The oncologist wanted to transfuse some platelets even though Tim had already gone through the low platelet symptom of a bloody nose earlier in the week.
We explored a little more about platelets and the fact that they don’t seem to “stick” with Tim and raise his platelet count the 60 thousand or so that it should. When he’s been in the hospital with a fever and also getting platelets, it seemed his platelet count would only go up a few. So this time, he was scheduled to come back to the clinic on Monday for counts again and his platelets had only gone up from 15 to 87. But I think his bone marrow was already going to do that. So we asked and found out that some patients just burn up the donor platelets pretty quick. We observed Tim’s temperature during the transfusion and sure enough his temperature shot up but then went down. Seems like getting platelets doesn’t help Tim a whole lot.
Tim’s white count was close to zero at that one week checkup as well. So he needed to be careful through the weekend. But by that Monday’s blood count, the white count had really recovered. The Neulasta has this effect of overshooting neutrophils so this was expected. His count dropped again at the end of week two but is still OK.
A change for the better was that Tim did not have a hospitalization after round 13 for fever. That extra week in-between round 12 and 13 really helped I think. It looked tricky for a while when he was getting platelets but his elevated temperature didn’t persist.
With the warmer sunny weather the topic of being outdoors in the sunshine came up. While on chemotherapy Tim is much more sensitive to the sun’s rays but once chemo is over he shouldn’t be any more sensitive than anyone else. However, since he has also had radiation treatment, that area will always require sunscreen and monitoring. His radiation treatment area is one that is exposed so extra caution with hats and sunscreen will need to be taken. At least until his hair begins to grow back.
We explored a little more about platelets and the fact that they don’t seem to “stick” with Tim and raise his platelet count the 60 thousand or so that it should. When he’s been in the hospital with a fever and also getting platelets, it seemed his platelet count would only go up a few. So this time, he was scheduled to come back to the clinic on Monday for counts again and his platelets had only gone up from 15 to 87. But I think his bone marrow was already going to do that. So we asked and found out that some patients just burn up the donor platelets pretty quick. We observed Tim’s temperature during the transfusion and sure enough his temperature shot up but then went down. Seems like getting platelets doesn’t help Tim a whole lot.
Tim’s white count was close to zero at that one week checkup as well. So he needed to be careful through the weekend. But by that Monday’s blood count, the white count had really recovered. The Neulasta has this effect of overshooting neutrophils so this was expected. His count dropped again at the end of week two but is still OK.
A change for the better was that Tim did not have a hospitalization after round 13 for fever. That extra week in-between round 12 and 13 really helped I think. It looked tricky for a while when he was getting platelets but his elevated temperature didn’t persist.
With the warmer sunny weather the topic of being outdoors in the sunshine came up. While on chemotherapy Tim is much more sensitive to the sun’s rays but once chemo is over he shouldn’t be any more sensitive than anyone else. However, since he has also had radiation treatment, that area will always require sunscreen and monitoring. His radiation treatment area is one that is exposed so extra caution with hats and sunscreen will need to be taken. At least until his hair begins to grow back.
Cycle 13 Goes Forward
Cycle 13’s triple whammy happened on May 4th, a week later than originally planned. That extra week gave Tim the time his bone marrow needed to resume white cell and red cell production. He actually felt better and stronger than he’d felt in a long time. Even this late in the treatment process we are still trying to figure out the best combination of anti-nausea medications. It just didn’t seem like the Aloxi was as effective as it had been when he started using it so it was eliminated and Zofran was substituted to go with the usual Scopolamine patch, Ativan and Dexamethasone. He didn’t have any Compazine so was awake for a lot of the day but he was sick a lot of the time. He was also sick a lot the next day until we could get it under control with the Zofran every 4 instead of every 6 hours. It seems like he needs the extra Zofran. For the next and last treatment, we’ll go back to Aloxi with Zofran as a “booster” and see if that gets him through the first day a little better.
We talked with the staff about what happens after the treatment is done. CT scans will continue every 3 months for up to 1.5 years and then gradually taper down to a lower frequency, eventually ending at one year intervals. As is typical for cancer, the 5 year mark will be critical. After that he is likely to need periodic continued CT scans.
We talked with the staff about what happens after the treatment is done. CT scans will continue every 3 months for up to 1.5 years and then gradually taper down to a lower frequency, eventually ending at one year intervals. As is typical for cancer, the 5 year mark will be critical. After that he is likely to need periodic continued CT scans.
Tuesday, May 01, 2007
First Delay
Timothy went in Friday all set and ready to go for cycle 13’s triple whammy. He was so looking forward to be able to say that he had only 1 triple whammy treatment left to go and since he is on the last break from weekly vincristines, would have only 1 treatment left to go in the whole process. NOT! His white count was too low to proceed. Again the caution about being around large crowds and/or people who may be ill. He was disappointed that he couldn’t just get it over with but he continues to always look for the bright side of things. The upside of it was that he could hang with Michael who was coming home again for the weekend, attend the training session scheduled for the summer employees at Roaring Springs, and attend church on Sunday when Rebecca would be confirmed. Plus he would be feeling pretty good for the weekend. 
Another upside was that Tim was able to do a photo shoot for the Make-a-Wish Foundation with BSU’s Bronco football coach Peterson. Recognize anyone else in the picture? This is in preparation for a dinner-fundraiser in October.
So we shall see if the week’s extra time is enough for his bone marrow to get going and do its thing. He had been getting Neulasta since cycle 9 and the purpose of that was to fertilize the bone marrow so to speak to make white cells to decrease the amount of time that his white count would be in the critically low area, hence to lower the risk of infection and prevent delays in treatment. Well, I suppose we’re not all that sure it is being as effective as it used to be since he has been hospitalized with fever during the last 2 cycles in spite of receiving Neulasta and it didn’t prevent a delay this time. It looks like his bone marrow is just too worn out now that after the Neulasta runs out it is unable to pick up its job of white cell production and the white count drops. The white count is usually at its highest immediately before a whammy. This time it wasn’t very high and the type of white cells that are part of the body’s army to fight infection was below the threshold limit to go on with the next treatment. He is just out of juice.
Another upside was that Tim was able to do a photo shoot for the Make-a-Wish Foundation with BSU’s Bronco football coach Peterson. Recognize anyone else in the picture? This is in preparation for a dinner-fundraiser in October.So we shall see if the week’s extra time is enough for his bone marrow to get going and do its thing. He had been getting Neulasta since cycle 9 and the purpose of that was to fertilize the bone marrow so to speak to make white cells to decrease the amount of time that his white count would be in the critically low area, hence to lower the risk of infection and prevent delays in treatment. Well, I suppose we’re not all that sure it is being as effective as it used to be since he has been hospitalized with fever during the last 2 cycles in spite of receiving Neulasta and it didn’t prevent a delay this time. It looks like his bone marrow is just too worn out now that after the Neulasta runs out it is unable to pick up its job of white cell production and the white count drops. The white count is usually at its highest immediately before a whammy. This time it wasn’t very high and the type of white cells that are part of the body’s army to fight infection was below the threshold limit to go on with the next treatment. He is just out of juice.
Getting Closer
The lower cyclophosphamide dose was used for this cycle and Tim seemed to feel a little better about it though he still encountered the same issues with nausea and threw up the same number of times that he did with the higher dose. We were hoping that the lower dose doesn’t beat his system up as much as the higher dose but as long as he feels that it went better I guess we’ll go with it and see how the rest of the cycle goes.
It’s been a week since his cycle 12 whammy and Tim had a rather lengthy nosebleed yesterday afternoon. We tried the recommended Afrin to get it to stop but even that didn’t do it. Sitting quietly with pressure for about 20 minutes was what did the trick. Other than that he felt as well as could be expected. Makes perfect sense since his platelet count came back down again. His red count was borderline and could wait a couple days if he didn’t want to hang around long enough for a transfusion of packed cells that day. It was also time for his next treatment of vincristine. He felt a little warm upon examination so they repeated taking his temperature which had been normal 20 minutes before when he walked into the clinic. Oh no. It was up to 102.6. They would not be letting his leave but instead admitted him to the hospital yet again. He had stubbed his toe almost a week ago and we were religiously treating it with Neosporin several times a day but they still were very concerned that there was always the possibility that the toe could be the source of the fever so they kept a close eye on it.
Tim was very disappointed because it was another weekend of big plans. Michael was coming home for the weekend, Rebecca had a piano recital that night, and he planned to make it to a game his soccer team was playing on Saturday. He had not as yet been able to attend a game because of treatment etc. and this was supposed to be the weekend he could go see them play. Since he wasn’t going anywhere, they went ahead and ordered up the 2 lumps each of platelets and packed red cells. Took a long time to get the fever down this time and his nurse said that he was probably starting to feel a little better when he started getting feisty. We cannot say enough about the wonderful staff both at the MSTI clinic and up on 4S of St Luke’s. They really work hard at trying to make your stay as comfortable as possible. He was released Sunday but stayed home with a low grade fever till Wednesday at which time he was to make his Senior Project Presentation. He managed to get that done.
That weekend Tim started to feel pretty good again and was able to participate in another autocross event. This time he and Bob raced the same car and much to Bob’s horror Tim beat him by about 2 seconds. Spanked him he did. Tim was all smiles; he’s really having fun now! Must be all that Xbox racing starting to pay off.
Thursday the following week brought the Mayors’ Awards to Youth. Tim was nominated by his Centennial guidance counselor and we attended the ceremony at city hall. It was a very inspiring evening with stories of accomplishments by many area students. Mayor Bieter commented that this event was something he and his office really looked forward to doing since a lot of other events don’t quite elicit the same joyous sentiments.
Timothy was interviewed by the Idaho Statesman earlier that day so it was indeed a busy day. The piece they did appeared on the paper’s front page and here is the link: http://www.idahostatesman.com/102/story/81344.html The length and prominent location of the piece was a bit of a surprise for us all.
It’s been a week since his cycle 12 whammy and Tim had a rather lengthy nosebleed yesterday afternoon. We tried the recommended Afrin to get it to stop but even that didn’t do it. Sitting quietly with pressure for about 20 minutes was what did the trick. Other than that he felt as well as could be expected. Makes perfect sense since his platelet count came back down again. His red count was borderline and could wait a couple days if he didn’t want to hang around long enough for a transfusion of packed cells that day. It was also time for his next treatment of vincristine. He felt a little warm upon examination so they repeated taking his temperature which had been normal 20 minutes before when he walked into the clinic. Oh no. It was up to 102.6. They would not be letting his leave but instead admitted him to the hospital yet again. He had stubbed his toe almost a week ago and we were religiously treating it with Neosporin several times a day but they still were very concerned that there was always the possibility that the toe could be the source of the fever so they kept a close eye on it.
Tim was very disappointed because it was another weekend of big plans. Michael was coming home for the weekend, Rebecca had a piano recital that night, and he planned to make it to a game his soccer team was playing on Saturday. He had not as yet been able to attend a game because of treatment etc. and this was supposed to be the weekend he could go see them play. Since he wasn’t going anywhere, they went ahead and ordered up the 2 lumps each of platelets and packed red cells. Took a long time to get the fever down this time and his nurse said that he was probably starting to feel a little better when he started getting feisty. We cannot say enough about the wonderful staff both at the MSTI clinic and up on 4S of St Luke’s. They really work hard at trying to make your stay as comfortable as possible. He was released Sunday but stayed home with a low grade fever till Wednesday at which time he was to make his Senior Project Presentation. He managed to get that done.
That weekend Tim started to feel pretty good again and was able to participate in another autocross event. This time he and Bob raced the same car and much to Bob’s horror Tim beat him by about 2 seconds. Spanked him he did. Tim was all smiles; he’s really having fun now! Must be all that Xbox racing starting to pay off.
Thursday the following week brought the Mayors’ Awards to Youth. Tim was nominated by his Centennial guidance counselor and we attended the ceremony at city hall. It was a very inspiring evening with stories of accomplishments by many area students. Mayor Bieter commented that this event was something he and his office really looked forward to doing since a lot of other events don’t quite elicit the same joyous sentiments.Timothy was interviewed by the Idaho Statesman earlier that day so it was indeed a busy day. The piece they did appeared on the paper’s front page and here is the link: http://www.idahostatesman.com/102/story/81344.html The length and prominent location of the piece was a bit of a surprise for us all.
Cycle 11
Cycle 11 came and went and was a bit of a tough one for Tim. As the treatments progress Tim has gotten more tired and worn out both physically and mentally so looking at the number of triple whammies ahead is difficult. Some of the anti-nausea regimen will have to be re-evaluated because they aren’t working as well as they used to. One option that was considered and will be taken is to go back to the original dosage of cyclophosphamide used in the first 4 whammies. That would put the dosage to almost half of what he’s gotten the last 7 cycles so hopefully that will make tolerating the number of cycles ahead a little less daunting. We’ll also go a few days longer with the anti-nausea meds and eliminate those that have lost their efficiency because they bring their own set of side effects.
Tim is also back to weekly treatments of vincristine. We are in the final push. This week his platelet count was well below the threshold and he did have some bruising so it was time for a platelet transfusion. He received 2 units of plateletpheresis. A donor is able to donate a lot more platelets via pheresis than the amount of platelets found in a regular type of donation of whole blood. This is accomplished by separating out the platelet component of the blood in a special centrifuge and then returning the rest. The donor replenishes what was harvested in about 24-48 hours and is able to donate more often which is good because platelets have a life span of just about 5 days so they always need more donors. Also, they are able to collect a larger volume of platelets without having to pool units from multiple donors and thus decrease the risk of transfusion.
Tim’s white cell count was almost negligible so he was cautioned about staying away from large crowds or people who were sick. The next day was Friday the start of spring break and he had big plans to hang with friends and have some fun. Alas it was not to be. He spiked a fever Friday afternoon and was admitted to the hospital. His blood work on admission showed that everything was down- white cell count, platelet count and red cell count. More transfusions were ordered and this time for both platelets and packed red cells. He was released Sunday and advised to lay low. He said he wasn’t planning on playing any football just maybe going bowling sometime in the next few days. Bowling was discouraged so sitting at home playing Xbox would just have to do.
His next treatment day brought another new event. His central line appeared to have some sort of blockage because they had difficulty drawing blood from it. The solution was to dissolve the clot by administering TPA, which is often used in treating heart attack, stroke, or pulmonary embolism. That seemed to do the trick and it was onward with treatment.
By Thursday of spring break Tim was well enough to venture out of town for a short while to
attend Vandal Friday at U of I for prospective fall freshmen. It happened that Michael had a band concert so the rest of the family was able to attend that though Tim stayed at the hotel to rest since he still didn’t have a whole lot of energy. His schedule was trimmed down to the essentials of visiting with the advising staff, signing up for his fall classes and getting his dorm room for the fall assigned. He was content to have family time during meals.
Autocross came on Sunday and Tim had a lot of fun with that. It didn’t take too much energy
and he conserved what he had by sitting and watching from the sidelines during down time. He raced his GTI while Bob raced the TT. His best time was only .02 seconds off of Bob’s best time. Yeah!
Tim is also back to weekly treatments of vincristine. We are in the final push. This week his platelet count was well below the threshold and he did have some bruising so it was time for a platelet transfusion. He received 2 units of plateletpheresis. A donor is able to donate a lot more platelets via pheresis than the amount of platelets found in a regular type of donation of whole blood. This is accomplished by separating out the platelet component of the blood in a special centrifuge and then returning the rest. The donor replenishes what was harvested in about 24-48 hours and is able to donate more often which is good because platelets have a life span of just about 5 days so they always need more donors. Also, they are able to collect a larger volume of platelets without having to pool units from multiple donors and thus decrease the risk of transfusion.
Tim’s white cell count was almost negligible so he was cautioned about staying away from large crowds or people who were sick. The next day was Friday the start of spring break and he had big plans to hang with friends and have some fun. Alas it was not to be. He spiked a fever Friday afternoon and was admitted to the hospital. His blood work on admission showed that everything was down- white cell count, platelet count and red cell count. More transfusions were ordered and this time for both platelets and packed red cells. He was released Sunday and advised to lay low. He said he wasn’t planning on playing any football just maybe going bowling sometime in the next few days. Bowling was discouraged so sitting at home playing Xbox would just have to do.
His next treatment day brought another new event. His central line appeared to have some sort of blockage because they had difficulty drawing blood from it. The solution was to dissolve the clot by administering TPA, which is often used in treating heart attack, stroke, or pulmonary embolism. That seemed to do the trick and it was onward with treatment.
By Thursday of spring break Tim was well enough to venture out of town for a short while to
attend Vandal Friday at U of I for prospective fall freshmen. It happened that Michael had a band concert so the rest of the family was able to attend that though Tim stayed at the hotel to rest since he still didn’t have a whole lot of energy. His schedule was trimmed down to the essentials of visiting with the advising staff, signing up for his fall classes and getting his dorm room for the fall assigned. He was content to have family time during meals.Autocross came on Sunday and Tim had a lot of fun with that. It didn’t take too much energy
and he conserved what he had by sitting and watching from the sidelines during down time. He raced his GTI while Bob raced the TT. His best time was only .02 seconds off of Bob’s best time. Yeah!
Subscribe to:
Posts (Atom)