Appt. 11:45am done 2:30pm
Don't have much in the way of details as Gil went right over to church after his appointment.
I do know he is rather tired, but I think work gets his mind off things: "keeping things as normal as possible"...more details to come...
2:30pm booster shot
11am sat. Funeral @ church
Sunday Super Bowl party @ church
Danielle volunteered today at Largo Med., I had my dermatology appointment then took snoopy for a run before picking Dani up. Trying to keep snoopy happy since he didn't go to the dog park this morning; didn't make much sense for Gil to take him with that pump attached.
Trying to keep everyone happy.
Wednesday, January 30, 2013
Tuesday, January 29, 2013
Day 2
Appt. 10:30am; done by 1:15pm
ifosfamide (i-FOS-fa-mide)
Not 100% sure of what all he was given today. I believe it was a repeat of what he had yesterday (etoposide (e-TOE-poe-side)) with the Ifosfamide (with anti-nausa) as a 24 hour or so? The paperwork he brought home only had information about the pump. He does have a little bag with a pump and the meds that he is hooked up to. He is complaining of achy-ness and, of course, they want him to drink a LOT so he pee's a lot. The Emend and other anti-nausea drugs seems to be working very well, although I am hyper-aware of every cough and hiccup.
Almost surreal. he's too young to be attached to a bag (no wife jokes, please). I have noticed him being a little unsure of somethings - maybe confusion, just may be a sign of being overwhelmed. He does seem fatigued (big surprise, right?)
I'm getting tired of dealing with the insurance company - 2 phone calls today about our little fender bender Thursday - even interrupted my workout - grrr. What seemed like such a benign accident seems to be a big deal to insurance companies. At some point I guess I need to get my car checked out (the adjusters office is open 7am - 7pm).
Well tomorrow is the last day of chemo (Carboplatin?); we'll see if he goes to church/work afterward. So far it seems like 'a-go'..
ifosfamide (i-FOS-fa-mide)
Not 100% sure of what all he was given today. I believe it was a repeat of what he had yesterday (etoposide (e-TOE-poe-side)) with the Ifosfamide (with anti-nausa) as a 24 hour or so? The paperwork he brought home only had information about the pump. He does have a little bag with a pump and the meds that he is hooked up to. He is complaining of achy-ness and, of course, they want him to drink a LOT so he pee's a lot. The Emend and other anti-nausea drugs seems to be working very well, although I am hyper-aware of every cough and hiccup.
Almost surreal. he's too young to be attached to a bag (no wife jokes, please). I have noticed him being a little unsure of somethings - maybe confusion, just may be a sign of being overwhelmed. He does seem fatigued (big surprise, right?)
I'm getting tired of dealing with the insurance company - 2 phone calls today about our little fender bender Thursday - even interrupted my workout - grrr. What seemed like such a benign accident seems to be a big deal to insurance companies. At some point I guess I need to get my car checked out (the adjusters office is open 7am - 7pm).
Well tomorrow is the last day of chemo (Carboplatin?); we'll see if he goes to church/work afterward. So far it seems like 'a-go'..
Monday, January 28, 2013
Day 1
Formerly Gil treatment was ABVD back in 2005-06
doxorubicin, which was originally called Adriamycin®, bleomycin, vinblastine , dacarbazine.
I think this is the ICE regimen Gil will be on this time. Not sure...we'll find out!
On the following day (day three) you'll be given a third infusion of etoposide, again over about an hour. You will finish your 24-hour infusion of ifosfamide and mesna, and be given a 12-hour infusion of mesna on its own. After this, you'll have a rest period with no chemotherapy for 17 days. This completes a cycle of your treatment. Each cycle lasts for 21 days (three weeks).
After the rest period (three weeks after you started) the same drugs will be given to you again, beginning the next cycle of your treatment. Usually 2–4 cycles of treatment are given over 2–4 months. This makes up a course of treatment.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/ICER-ICE.aspx
Appt at 1pm; out by 2:45pm
Etoposide (VP-16); aloxi & decadron (anti-nausea drugs) plus took Emend 1 hour prior to visit
Feeling ok, but feeling tired; a little dizzy (loopy in the head is how he put it)
Not sure he'll appreciate the picture, but I wanted to show how both dogs are keeping watch over him (mind you, Merlyn is practically deaf, so he feels everything)
doxorubicin, which was originally called Adriamycin®, bleomycin, vinblastine , dacarbazine.
I think this is the ICE regimen Gil will be on this time. Not sure...we'll find out!
Schedule C
On the first day of ICE chemotherapy, you'll be given an infusion of etoposide for an hour. On the next day (day two) the etoposide will be repeated. You will also be given a 60-minute infusion of carboplatin and start a 24-hour infusion of ifosfamide and mesna.On the following day (day three) you'll be given a third infusion of etoposide, again over about an hour. You will finish your 24-hour infusion of ifosfamide and mesna, and be given a 12-hour infusion of mesna on its own. After this, you'll have a rest period with no chemotherapy for 17 days. This completes a cycle of your treatment. Each cycle lasts for 21 days (three weeks).
After the rest period (three weeks after you started) the same drugs will be given to you again, beginning the next cycle of your treatment. Usually 2–4 cycles of treatment are given over 2–4 months. This makes up a course of treatment.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/ICER-ICE.aspx
Appt at 1pm; out by 2:45pm
Etoposide (VP-16); aloxi & decadron (anti-nausea drugs) plus took Emend 1 hour prior to visit
Feeling ok, but feeling tired; a little dizzy (loopy in the head is how he put it)
Not sure he'll appreciate the picture, but I wanted to show how both dogs are keeping watch over him (mind you, Merlyn is practically deaf, so he feels everything)
Saturday, January 26, 2013
Wild couple of days
Thursday 1/24
On the way home from work, actually to AT&T to take care of Danielle's pre-paid phone, we got rear-ended. I stopped for a car that was stopping for an ambulance and saw the sheriff coming behind me. Don't think I got anything out of my mouth before he hit us...I knew it might happen. He was looking for the sirens behind him, look front and...surprise! So he started to write it up - we moved off to their offices which were right near by (on Ulmerton between 113th and Seminole) - and two other officers showed up to write up the accident. No damage to my car except some minor dents in the tail pipe; took the grill completely off his cruiser; and no injuries. I also never touched the car in front of me so he left after making sure all was ok.
After dinner, Danielle started complaining of hip pain. She possibly twisted and strained against the seat belt - I think - so she wanted to get it checked out 'tomorrow' - Friday, after Gil's surgery. hmmm....
Friday 1/25
Gil had his port surgery. We were at the hospital shortly after 6am. We went through billing about 6:45 and then he was taken back for prep. I went back to see him about 7:30 and they promptly took him back to pre-op. They had a monitor in the waiting room that let you know the status of your 'case'...he was in pre-op a LONG time. I think an operation before him must have taken longer than planned. Anyway, he was done and I was allowed to go back to recovery/holding just after 11am and we left just after noon. After debating how to get his meds and the kid, who had been texting me on & off while waiting about going to the ER, and taking care of all that, I dropped him off at home and got him settled in.
Left the house around 1 pm, went to Walgreens and dropped off his script and off the school. I kept hoping her wanting to go the the ER would fall by the wayside, but no. She wanted to get checked out in case anything was wrong; "better safe than sorry" she kept saying.
So we got it cleared with her insurance and I took her to Largo Medical, where she also volunteers. It was probably around 2:30pm ...and I waited till about 3:30. She was in waiting for radiology. She kept telling me to go, so I figured I'd go ahead, pick up Gil's meds, play with snoopy for a bit, etc. While standing in line I got a call: She's under 17, I need to show her guardianship papers, and give some of my private info. I was in the middle of Walgreens and really did not want to give out my social security number! I told her I'd call back, but when I did, it was just a matter of getting back to the hospital with the needed paperwork. Grrrrr.....I went home, angrily apologized to Gil that he'd have to take care of the dogs, and stormed off back to Largo Med (which resulted in some angry banter), did what needed to be done, and sat with her in her room. I got a little impatient and started asking where things stood with her - finally got the Dr. who said x-ray's looked good, probably some strained muscles, so anti-inflammatory and muscle relaxants were prescribed. Off for home about 5:30pm...stop and put in her 'scripts...home to order pizza, a little laundry, try to settle down.
Was very glad to go to sleep. I know I'm probably babying Gil too much, but I wasn't able to care for him properly and feel very guilty.
After dinner, Danielle started complaining of hip pain. She possibly twisted and strained against the seat belt - I think - so she wanted to get it checked out 'tomorrow' - Friday, after Gil's surgery. hmmm....
Friday 1/25
Gil had his port surgery. We were at the hospital shortly after 6am. We went through billing about 6:45 and then he was taken back for prep. I went back to see him about 7:30 and they promptly took him back to pre-op. They had a monitor in the waiting room that let you know the status of your 'case'...he was in pre-op a LONG time. I think an operation before him must have taken longer than planned. Anyway, he was done and I was allowed to go back to recovery/holding just after 11am and we left just after noon. After debating how to get his meds and the kid, who had been texting me on & off while waiting about going to the ER, and taking care of all that, I dropped him off at home and got him settled in.
Left the house around 1 pm, went to Walgreens and dropped off his script and off the school. I kept hoping her wanting to go the the ER would fall by the wayside, but no. She wanted to get checked out in case anything was wrong; "better safe than sorry" she kept saying.
So we got it cleared with her insurance and I took her to Largo Medical, where she also volunteers. It was probably around 2:30pm ...and I waited till about 3:30. She was in waiting for radiology. She kept telling me to go, so I figured I'd go ahead, pick up Gil's meds, play with snoopy for a bit, etc. While standing in line I got a call: She's under 17, I need to show her guardianship papers, and give some of my private info. I was in the middle of Walgreens and really did not want to give out my social security number! I told her I'd call back, but when I did, it was just a matter of getting back to the hospital with the needed paperwork. Grrrrr.....I went home, angrily apologized to Gil that he'd have to take care of the dogs, and stormed off back to Largo Med (which resulted in some angry banter), did what needed to be done, and sat with her in her room. I got a little impatient and started asking where things stood with her - finally got the Dr. who said x-ray's looked good, probably some strained muscles, so anti-inflammatory and muscle relaxants were prescribed. Off for home about 5:30pm...stop and put in her 'scripts...home to order pizza, a little laundry, try to settle down.
Was very glad to go to sleep. I know I'm probably babying Gil too much, but I wasn't able to care for him properly and feel very guilty.
Tuesday, January 22, 2013
Here we go...
So after a little mix up, I guess things are starting to roll. Moffitt has signed off on Gil having Chemo done before being evaluated for his marrow transplant, so the port goes in Friday 1/25 and chemo starts Monday 1/28.
This is where it get's hard. A while back when all this started, we were taking a nap one day over the Thanksgiving holiday. Gil started to cry in his sleep. It was only for a moment, but it really disturbed me. This is when you realize how difficult this is. It's hard to feel fine, and know you are about to be made so sick on purpose; you're about to be poisoned in the name of a cure. You wonder if it's worth it? what would happen if left untreated, and how long would it be?
We'll never really know.
Anyone up for customizing a barf bucket?
This is where it get's hard. A while back when all this started, we were taking a nap one day over the Thanksgiving holiday. Gil started to cry in his sleep. It was only for a moment, but it really disturbed me. This is when you realize how difficult this is. It's hard to feel fine, and know you are about to be made so sick on purpose; you're about to be poisoned in the name of a cure. You wonder if it's worth it? what would happen if left untreated, and how long would it be?
We'll never really know.
Anyone up for customizing a barf bucket?
Friday, January 18, 2013
let the whirlwind begin...
"
Gil finally got his appointment with Moffitt: 9:30 am on February 7th; this is for a bone marrow evaluation and....not sure what else, but they suggested I come along and that he should block out about 4 hours for whatever it is they are going to do.
Right after that he got phone call from his oncologist that he needed to be seen right away: 11:45 friday morning (today, Jan 18th). That's where the above information comes in. He has an appointment on Monday, jan 21st with Dr. Berry regarding getting the port put in; looks like Dr. Ball is planning for things to get started pretty quick now. ICE refers to the chemo regimen of Ifosfamide, Carboplatin, and Etoposide that is administered over a series of 3 days, then 21 days off; he is hoping for 2 rounds. Then it seems this will all be followed by a bone marrow transplant - of his own marrow. Not sure how that works, but we'll find out!
The problem is, Dr. Ball wants to start chemo before he is seen by the Dr. at Moffitt, which I'm thinking will alter the marrow before it's tested or harvested, so we have a call into moffitt to check on this.
BTW - still in search of a new host family for Danielle. We thought we were all set with a family and she was ready to move this weekend, but they changed their mind.
Gil finally got his appointment with Moffitt: 9:30 am on February 7th; this is for a bone marrow evaluation and....not sure what else, but they suggested I come along and that he should block out about 4 hours for whatever it is they are going to do.
Right after that he got phone call from his oncologist that he needed to be seen right away: 11:45 friday morning (today, Jan 18th). That's where the above information comes in. He has an appointment on Monday, jan 21st with Dr. Berry regarding getting the port put in; looks like Dr. Ball is planning for things to get started pretty quick now. ICE refers to the chemo regimen of Ifosfamide, Carboplatin, and Etoposide that is administered over a series of 3 days, then 21 days off; he is hoping for 2 rounds. Then it seems this will all be followed by a bone marrow transplant - of his own marrow. Not sure how that works, but we'll find out!
The problem is, Dr. Ball wants to start chemo before he is seen by the Dr. at Moffitt, which I'm thinking will alter the marrow before it's tested or harvested, so we have a call into moffitt to check on this.
BTW - still in search of a new host family for Danielle. We thought we were all set with a family and she was ready to move this weekend, but they changed their mind.
Sunday, January 13, 2013
PET & Bone marrow biopsy
Gil had his PET scan this week and on Friday, he had a follow up with Dr. Ball and his bone marrow biopsy.
According to Dr. Ball, the PET scan revealed that his tonsils are lighting up - about an 8 where as the other nodes are about a 4 or under - higher the number, the worse it is. I guess they use some pretty radioactive stuff, because one of the nurses was pregnant and couldn't go near anyone once the contrast was injected. So his tonsils must have adsorbed a lot of the contrast and, BANG, there they are. Unusual, but not enough that the Dr. wants to take them out; our assumption is that as long as it is self contained, why risk letting it out? Otherwise we really don't know why to leave them in.
The bone marrow biopsy went well. He's sore but functioning without a cane or any assistance. Getting up and down from sitting or using stairs gets old pretty quick. We still have not heard from Moffitt about his evaluation or recommendations regarding a transplant. There appears to be an appointment on the books for Jan 17th, but there is no time listed nor have we received a call! hmmm....
Well, a port has been recommended so...
Moffitt on the 17th?
Call Dr. Barry about putting in a port
Follow up with Dr. Ball on Jan 25th
In the meantime, several of my friends did Disney Marathon Weekend this weekend - Congrats to all the runners (RunVie & Team In Training)! They raised tons of money for Leukemia and Lymphoma society doing research and patient services; A very worthy cause!
Also, Jack Jones (great nephew) turned eight this weekend; we got to see Shannon & Matt's new house and their newest addition, sir Guinness - a boxer-mix pup. SO CUTE!
That's a PET scan of a different kind! Jude (great niece) has some baby competition.
According to Dr. Ball, the PET scan revealed that his tonsils are lighting up - about an 8 where as the other nodes are about a 4 or under - higher the number, the worse it is. I guess they use some pretty radioactive stuff, because one of the nurses was pregnant and couldn't go near anyone once the contrast was injected. So his tonsils must have adsorbed a lot of the contrast and, BANG, there they are. Unusual, but not enough that the Dr. wants to take them out; our assumption is that as long as it is self contained, why risk letting it out? Otherwise we really don't know why to leave them in.
The bone marrow biopsy went well. He's sore but functioning without a cane or any assistance. Getting up and down from sitting or using stairs gets old pretty quick. We still have not heard from Moffitt about his evaluation or recommendations regarding a transplant. There appears to be an appointment on the books for Jan 17th, but there is no time listed nor have we received a call! hmmm....
Well, a port has been recommended so...
Moffitt on the 17th?
Call Dr. Barry about putting in a port
Follow up with Dr. Ball on Jan 25th
In the meantime, several of my friends did Disney Marathon Weekend this weekend - Congrats to all the runners (RunVie & Team In Training)! They raised tons of money for Leukemia and Lymphoma society doing research and patient services; A very worthy cause!
Also, Jack Jones (great nephew) turned eight this weekend; we got to see Shannon & Matt's new house and their newest addition, sir Guinness - a boxer-mix pup. SO CUTE!
That's a PET scan of a different kind! Jude (great niece) has some baby competition.
Saturday, January 05, 2013
Some more details
(darn me and my reading)
If I remember what the doctor said, and referring to my reading the form of Hodgkin's Gil had 6 years ago was most commonly seen in the younger age group for Hodgkin's (18-34, although he was 42 - always knew he was unusual). The form he has now is seen in the older age group over 50 (Gil will be 50 this year). (Dr. David J. Straus, 2/8/12)
I guess from the Dr.'s reaction, it unusual to see both forms in the same person, so is it a re-occurrence or secondary incident? Regardless, he faces chemo again and the possibility of bone marrow transplant.
In an odd turn of events, our current student Danielle has decided she should find a new family. She assures us it's nothing we have done, but that she doesn't feel she could handle seeing Gil get sick and she didn't want to be a burden. We've never had a kid want to leave us before, so it's a little mixed emotions, but it's completely understandable.
If I remember what the doctor said, and referring to my reading the form of Hodgkin's Gil had 6 years ago was most commonly seen in the younger age group for Hodgkin's (18-34, although he was 42 - always knew he was unusual). The form he has now is seen in the older age group over 50 (Gil will be 50 this year). (Dr. David J. Straus, 2/8/12)
I guess from the Dr.'s reaction, it unusual to see both forms in the same person, so is it a re-occurrence or secondary incident? Regardless, he faces chemo again and the possibility of bone marrow transplant.
In an odd turn of events, our current student Danielle has decided she should find a new family. She assures us it's nothing we have done, but that she doesn't feel she could handle seeing Gil get sick and she didn't want to be a burden. We've never had a kid want to leave us before, so it's a little mixed emotions, but it's completely understandable.
Wednesday, January 02, 2013
Diagnosis
Classic Hodgkin's lymphoma. The Dr. read off the details...minor differences between the previous form and this one, so the remaining question is if it is a re-occurrence or completely separate. The bone marrow test will be the tell tale, I guess. Dr. Ball seemed a little surprised at the result of the biopsy - that it would be almost the same - since it has been 6 years.
Either way, it looks like we are starting at ground zero:
Pet scan Jan 8th
Bone marrow biopsy Jan 11th
Because of his allergy to Adriamycin (Doxorubicin)
they may change the chemo regimen he was on before. We figure he's starting chemo probably in February - hoping for 2 rounds (4 months; 2 weeks on, 1 off?); one month radiation; maybe done with all this by summer??
One can hope.
Either way, it looks like we are starting at ground zero:
Pet scan Jan 8th
Bone marrow biopsy Jan 11th
Because of his allergy to Adriamycin (Doxorubicin)
they may change the chemo regimen he was on before. We figure he's starting chemo probably in February - hoping for 2 rounds (4 months; 2 weeks on, 1 off?); one month radiation; maybe done with all this by summer??
One can hope.
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