Chemo 3 hit me hard. The dose didn't increase at all but I'm feeling the cumulative effects of the chemotherapy. I was in bed for 16 to 18 hrs per day for five days straight on my 3rd chemo treatment. Plus, instead of not being able to feel my fingertips on my left hand, all the fingers on my left hand started going numb and the fingers on my right hand started going numb a few days ago which was about 7 days after the start of chemo 3. Throw in a few bouts of diarrhea in the wee hours of the morning and it made for an all around miserable time.
Here it is nine days after the start of chemo 3 and I'm well rested and I feel 70%. Pretty darned good. The feeling in all my fingers is starting to return.
We had an appointment with Dr. Goodwin, my chemo doctor, yesterday and after I described my symptoms she immediately piped up that we were stopping the oxaliplatin. Yay!!! She's worried about permanent nerve damage in my fingers and it obviously is way too much for me. I shouldn't be in bed for five days straight. I should feel tired and need to nap for 1 hr each day but that's the extent.
So, now that I'm ditching the ox next week it also means I don't need injections of calcium and magnesium for one hour which were to counteract the neuropathic effects of the ox. The main drug now will just be the fluorouracil (5-FU as it's commonly called) and associated steriods, leucovorin injection and whatever the hell else they jam into me. Instead of the 3.5 hour chemo injection that I had last week, I can expect a brief 1.5 hour injection period at the hospital and then they'll send me home with my bottle of 5-FU hooked up to my hip for 48 hours.
I'm feeling a lot better about this. The news got even better. Because I'm only on the 5-FU, Dr. Goodwin suggested moving me to the pills instead of the bottle. Holy crap, I almost kissed her! That means the PICC line in my bicep could disappear and I won't have restrictions of going into the hospital or being at home to take my chemo. I could just take pills on my own. The pills are capecitabine and, once processed by my liver, acts the same as 5-FU. The goal would be to start these in mid-July for my 5th treatment. I would take these for the four remaining treatments for 14 days straight followed by 7 days of no pills on a three week rotation.
The pills, like the bottle, are expensive. Each treatment would be about $2,500 to $3,000 and this brings it to over $10,000 for my four remaining treatments. My government health insurance covers 80% of my prescriptions so my out of pocket portion would be in the neighbourhood of $2,000. The good news is I've applied for a manufacturer's program which may pay the remaining 20% not covered by my insurance. I'll probably get news on that in a week or so. Interesting that the manufacturer of the pills has a program to pick up 20% of the tab. I see it as a sales gimmick. It allows them to sell more pills at the expense of reducing profit from 300% to 280%.
Thursday 28 June 2012
Monday 18 June 2012
3rd Chemo Tomorrow
We just got back from the cottage last night. We've been twice since I last wrote. We're trying to take advantage of the breaks in medical appointments whenever we can and so far the weather has been cooperating. This week I have four days in a row of medical stuff. Pretty typical.
This past week was my good week as the chemo side effects tend to subside after six days. I was feeling good until Friday. We planned to head up that night after Kate's soccer. Then I got sick.
This morning, after bloodwork, we went to an appointment with the urologist. I've never been known to have a bladder of steel but the surgery made it smaller than ever. I'm still healing from the surgery and the radiation and chemo makes it even worse. I'm told most healing will happen over the next two years so I'm glad there's hope. We'll see how things are in another six months.
It's a pain not being able to swim at the cottage. We ordered a swimming sort of wrap thing for my arm but the incision on my ass hasn't fully healed from the surgery. It was nearly healed but the chemo made it worse and it hasn't been able to gain any ground. Due to this I didn't want to expose it to lake water. I'll ask my surgeon on Wednesday if swimming in the saltwater pool at home is okay.
Erinn has been changing my dressing on my ass daily for the last two months now. I affectionately call it "Packing my Fudge". She doesn't find that amusing.
This past week was my good week as the chemo side effects tend to subside after six days. I was feeling good until Friday. We planned to head up that night after Kate's soccer. Then I got sick.
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| This is why I got my chemo moved from Thursday to Tuesday. Kate started playing and we get shafted with Friday night games. Now, with the chemo bottle removed on Thursdays, there's a hope I may be feeling well enough to attend instead of only being able to go every second week (non-chemo weeks). |
When you're on chemo, your immune system is pretty much reduced to zero resistance. Maggie had a runny nose for a few days and then I got a wicked sore throat on Friday and extreme fatigue on Friday afternoon. Instead of packing for the cottage, I slept. Erinn, once again, did all the packing but at least this time I was able to drive. On Saturday at the cottage, I slept some more but by Sunday I had recovered enough to feel 80% which is as good as I've felt in the last many months.
It's a pain not being able to swim at the cottage. We ordered a swimming sort of wrap thing for my arm but the incision on my ass hasn't fully healed from the surgery. It was nearly healed but the chemo made it worse and it hasn't been able to gain any ground. Due to this I didn't want to expose it to lake water. I'll ask my surgeon on Wednesday if swimming in the saltwater pool at home is okay.
Erinn has been changing my dressing on my ass daily for the last two months now. I affectionately call it "Packing my Fudge". She doesn't find that amusing.
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| Myself (#48) and TEAM SHOULDERCHECK friend Alan Burns at my last race which was Shannonville in 2009. The Canadian Superbike season opener kicks off this weekend at Shannonville. Stay glued to your TV sets for the six month tape delay or check out the next day results at http://www.csbk.ca/ |
Saturday 9 June 2012
Good News
I got two pieces of good news right before my second chemo treatment. First off, I begged my chemo doctor to lower my dose of chemo and, once I described my symptoms, she agreed. Looks like that quantity of drugs for my weight was just too much for my virgin drug-free body to handle. She has lowered my oxaliplatin by 15% and the fluorouracil by 10%. However, to counteract the tingling hands I now get two 30 minute injections of calcium and magnesium. Hmm...sounds so natural like I'm going to a health spa. I'll take cucumbers over my eyes if I can dump the oxaliplatin or fluorouracil.
The bottle came off this morning and, so far, my symptoms of the 2nd chemo are far reduced from the first go-round. I'm not as tired and only my left hand is pins and needles and very temperature sensitive. I've also discovered that lukewarm drinks are really too cold for me to drink as I get a lump in my throat and slight pins and needles in my mouth. I know from last time the temperature sensitivity will wear away in a few days. I'm just glad not to be in bed for five days straight with a sixth day of feeling 50% like last time. I'm optimistic this round will be better.
My chapped lips are much better as well. My appetite is reduced but I feel okay so long as I can nap.
The other good news is my ostomy nurse, who visits twice per week, has declared me free to do the colostomy stuff without her. That's great as it no longer obligates me to be home for her visits twice a week. Now I just have my once a week PICC line visit to either disconnect the bottle or change my dressing. Phew. From three home nurse visits per week to just one!
Because of this, there's an opening in the calendar and tomorrow we're off to the cottage with the kids for three days. Somebody pinch me!
The bottle came off this morning and, so far, my symptoms of the 2nd chemo are far reduced from the first go-round. I'm not as tired and only my left hand is pins and needles and very temperature sensitive. I've also discovered that lukewarm drinks are really too cold for me to drink as I get a lump in my throat and slight pins and needles in my mouth. I know from last time the temperature sensitivity will wear away in a few days. I'm just glad not to be in bed for five days straight with a sixth day of feeling 50% like last time. I'm optimistic this round will be better.
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| Now that I'm on chemo I have to rinse my mouth with Club Soda every four hours until...September. |
My chapped lips are much better as well. My appetite is reduced but I feel okay so long as I can nap.
The other good news is my ostomy nurse, who visits twice per week, has declared me free to do the colostomy stuff without her. That's great as it no longer obligates me to be home for her visits twice a week. Now I just have my once a week PICC line visit to either disconnect the bottle or change my dressing. Phew. From three home nurse visits per week to just one!
Because of this, there's an opening in the calendar and tomorrow we're off to the cottage with the kids for three days. Somebody pinch me!
Wednesday 6 June 2012
2nd Chemo Tomorrow
It's been two weeks since my first chemo injection and I get the second one tomorrow. I'm counting them off until I'm done all eight.
First, I should share how the first chemo went.
I get my chemo at the Ottawa General Hospital Cancer Clinic. Thankfully, this wing is really nice and only about three years old. I like new, especially when getting depressing cancer treatment.
What my routine consists of is an injection of chemicals for 48 hours every two weeks. It starts off at the hospital where I get the first series of chemicals over 3 hours and then they hook up the last chemical to a bottle on my hip and it's piped into my PICC line in my arm and they send me home. 46 hours later, the bottle is empty and a nurse comes to my house to remove the bottle, flush the line and change my dressing. A week later, another nurse comes to the house to change my dressing in the PICC line. I hadn't realized I'd need a second visit a week later so Erinn will learn how to change that dressing and flush the line so we can actually go to the cottage for more than just Saturday and Sunday every two weeks. My littany of medical appointments and nurse home visits (3 times per week) is really cramping my style. I've been trying to be positive and make lemonade out of these lemons I've been dealt so I was hoping to enjoy cottage time every second week but we're still figuring out how to make it more than just four days a month. And goddamned weekends at that. I had a glimmer of hope of going Saturday to Monday in two weeks but I'm unable to change a doctor's appointment I have on the Monday.
Oh yeah, two weeks ago, after climbing the two flights of stairs for my chemo treatment, I was in the lazy-boy for my injections and my pulse was only 42. Weird. Sometimes, if I'm relaxed I can lower my pulse to 50 but I think I'm normally around 60. The nurse was also concerned with my blood pressure but it's normally 100/60 so she ignored the warning bells on the machine for my heartbeat. Erinn, on the other hand, was worried I might croak right there.
Chemo Process:
The first pills I take are anti-nausea pills. One in the morning, one at night for three days. They are compulsory. Then I take steroid pills. Then they inject me with leucovorin which is used to increase the activity of the 5-fluorouracil (5FU). It only has a few side effects of seizures and fainting with rash and swollen face/lip/tongue/throat. Not so bad.
Next is oxaliplatin which is another chemo drug specific to colorectal cancer. The main drug is 5-fluorouracil (5-FU) which starts injection in the hospital through the bottle hook-up and then I'm free to go home. Between the ox and the 5-FU there are ten pages of potential side effects, some of which I went through last week.
When I was getting my first injection they gave me the literature on the drugs and a pair of work gloves. The gloves were for reaching into the fridge at home. What?? One of the side effects is a severe sensitivity to cold items. I cannot touch or drink anything that is not lukewarm or warmer. It kicked in within an hour of my first injections. I went to the washroom in the hospital dragging my IV pole with me and I got an electric shock from the hot water tap when I washed my hands. I had to let the water warm up before I washed as it was a strong pins and needles in my hands. From that I learned not to put my lips on anything cold and Erinn removed things from the fridge for me while I waited for them to warm up before I drank or ate. We've learned to leave a small bowl of fruit on the counter for me so it can be room temperature. Thankfully, this side effect disappeared on day 7 so I celebrated by eating ice cream.
I also have a severe skin sensitivity to sunlight. Combined with the lowered immune system and mouth sores, diarrhea, nausea, vomiting and poor appetite, I should be able to lose another five pounds without too much trouble. I haven't experienced mouth sores but my lips are chapped like crazy. I'm not even in the sun but I've gone through all my chapstick at home. Time to buy more.
And, right before my next chemo, my left fingers are still pins and needles from my last injection. I don't think that'll get better by tonight and it'll certainly get worse tomorrow.
Tomorrow's chemo will be easier. Erinn can stay at home and I'll bus it into the hospital then call for a ride home.
I can't wait to end this!!
First, I should share how the first chemo went.
I get my chemo at the Ottawa General Hospital Cancer Clinic. Thankfully, this wing is really nice and only about three years old. I like new, especially when getting depressing cancer treatment.
What my routine consists of is an injection of chemicals for 48 hours every two weeks. It starts off at the hospital where I get the first series of chemicals over 3 hours and then they hook up the last chemical to a bottle on my hip and it's piped into my PICC line in my arm and they send me home. 46 hours later, the bottle is empty and a nurse comes to my house to remove the bottle, flush the line and change my dressing. A week later, another nurse comes to the house to change my dressing in the PICC line. I hadn't realized I'd need a second visit a week later so Erinn will learn how to change that dressing and flush the line so we can actually go to the cottage for more than just Saturday and Sunday every two weeks. My littany of medical appointments and nurse home visits (3 times per week) is really cramping my style. I've been trying to be positive and make lemonade out of these lemons I've been dealt so I was hoping to enjoy cottage time every second week but we're still figuring out how to make it more than just four days a month. And goddamned weekends at that. I had a glimmer of hope of going Saturday to Monday in two weeks but I'm unable to change a doctor's appointment I have on the Monday.
Oh yeah, two weeks ago, after climbing the two flights of stairs for my chemo treatment, I was in the lazy-boy for my injections and my pulse was only 42. Weird. Sometimes, if I'm relaxed I can lower my pulse to 50 but I think I'm normally around 60. The nurse was also concerned with my blood pressure but it's normally 100/60 so she ignored the warning bells on the machine for my heartbeat. Erinn, on the other hand, was worried I might croak right there.
Chemo Process:
 |
| Here I am with my chemo bottle on my hip. It stays there for 48 hrs. After my PICC line insertion, I worked up the courage to sit in a barber's chair. It actually went well and I'm sitting a lot more now. 185 lbs and ready for hair loss! |
Next is oxaliplatin which is another chemo drug specific to colorectal cancer. The main drug is 5-fluorouracil (5-FU) which starts injection in the hospital through the bottle hook-up and then I'm free to go home. Between the ox and the 5-FU there are ten pages of potential side effects, some of which I went through last week.
When I was getting my first injection they gave me the literature on the drugs and a pair of work gloves. The gloves were for reaching into the fridge at home. What?? One of the side effects is a severe sensitivity to cold items. I cannot touch or drink anything that is not lukewarm or warmer. It kicked in within an hour of my first injections. I went to the washroom in the hospital dragging my IV pole with me and I got an electric shock from the hot water tap when I washed my hands. I had to let the water warm up before I washed as it was a strong pins and needles in my hands. From that I learned not to put my lips on anything cold and Erinn removed things from the fridge for me while I waited for them to warm up before I drank or ate. We've learned to leave a small bowl of fruit on the counter for me so it can be room temperature. Thankfully, this side effect disappeared on day 7 so I celebrated by eating ice cream.
I also have a severe skin sensitivity to sunlight. Combined with the lowered immune system and mouth sores, diarrhea, nausea, vomiting and poor appetite, I should be able to lose another five pounds without too much trouble. I haven't experienced mouth sores but my lips are chapped like crazy. I'm not even in the sun but I've gone through all my chapstick at home. Time to buy more.
And, right before my next chemo, my left fingers are still pins and needles from my last injection. I don't think that'll get better by tonight and it'll certainly get worse tomorrow.
Tomorrow's chemo will be easier. Erinn can stay at home and I'll bus it into the hospital then call for a ride home.
I can't wait to end this!!
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