This seems to be the hardest part at this stage. The waiting...waiting to see what 'arm' of the study I'll get...waiting to do the first jab...to see what, if any, reaction I'll have to the chemo. Waiting to see what my life is going to be like on treatment (although I know that will probably evolve as the drugs build up over time).
I've not been sleeping well, anticipating all of this. I didn't go to bed until 1 a.m. and was up at 6:00 a.m. ARGH - I love sleep and need to just GET ON WITH THIS!
Today, I think I'll see if Em wants to take our dogs on a nice long hike in the state park trails a few miles from our house. That would probably go a long way in helping distract and relax me. BREATH...yes, I remember to do that, too :)
I've heard from KennyG in Alabama and he's doing amazing after his first shot. So well, in fact, that he said he wondered if they'd given him a placebo. This was a joke, of course, because there are NO placebos on this trial and he knows which arm he got (the 28 wk course with all 3 drugs). He'll be taking 17 pills a day (not counting the tylenol).
I'm sure I'll be taking a bit smaller dose since my weight is less and it's based on weight. But for a person who hates pill taking, it is gonna take some getting used to all the same. It sure is encouraging, though, to hear how little the drugs are affecting him so far (it's been slight and managable with tylenol - slight flu-ish feeling, slight headache and a tad sluggish). YIPPEE! Hope I'm as lucky!
Monday, April 30, 2007
Thursday, April 26, 2007
Locks of Love
I've been growing my hair out ever since Katrina came barreling through here almost 2 years ago now. It was getting pretty long. I sometimes got funny looks about the length of my hair - a woman of 50+ with long hair. I couldn't quite put my finger on exactly why I felt like doing it...I just knew I wanted to. Well, life is funny in how the purpose of things tend to reveal themselves to you eventually, isn't it?
I've heard that there is a good chance of some degree of hair loss during the chemo, so I decided to do something good with it before that could happen. Is THIS why I was growing my hair long? Maybe! What the Bleep do I know? ~smile~
So anyway...today, Emma and I trotted off to the salon and both had our hair cut. Mine will be donated to the Locks of Love: http://locksoflove.org. In order to donate hair, the longest part has to be a minimun of 10 inches....mine was 10.5...just made it :) It feels good to know that they will be able to put my hair to good use.
Here are us girls with our new "do's"
Wednesday, April 25, 2007
I Got A Start Date!
I called the doctor's office and got a 'tentative' start date of next Thursday, May 3rd. Margee, one of my nurses, says she just wants to double check to make sure it's soon enough - don't wanna get shut out by waiting too long. I think it'll be fine since I've already heard from another person doing this trial in Indiana that her start date is on the 12th.
Speaking 12th's...mine and Kevin's 12th wedding anniversary is coming up on May 5th, so I imagine we'll be celebrating early. I'm scouting now for a nice little restaurant or outdoors concert where we can go. Emma has insisted that she wants to celebrate with us, and how can we say no to that little face (above)...so it'll be the three of us, and that's peachy with Kev and me. We all have fun together!
I've been trying to prepare as much as I can for the possible side effects of treatment - stocking up my arsenal and getting my 'game face' on! I've heard that anywhere from 10-20% of people doing HCV treatment experience minor or NO side effects, 10-20% of people experience severe sides (and have to stop), but that the majority in the middle have side effects that are manageable. I like to learn everything I can, plan for everything I can, and then, only then, I'm able to relax and let what will be, BE. If I don't experience any sides or they're minor, that'll be amazing...otherwise, hopefully I'll be prepared and know what to do for them.
Seems everyone I've talked to or read about have said that you will most likely experience "flu-like" symptoms from the interferon shots (actually heard a combination of the worst flu you ever had and the worst hang-over you ever had). I'm planning to give my jabs on Thursday nights before bedtime. Kevin's schedule has changed and now he will be home with us on Friday, Saturday and Sunday, so this will allow him to be home for Emma if I'm feeling out of sorts from the shot.
I've got lots of bottled water stocked up, as well as extra-strength tylenol, but I still need to find an OTC sleep aid. Still trying to work out exactly when to take the tylenol....how long after the shot? And if I should take it also before? Apparently the reaction time is different according to the maker of the drug....I'll be using the pegintron 'redipen' from Schering-Plough. My new internet friend, KennyG, (who is doing this same trial but in Alabama) will be starting this Friday, so I'm waiting to learn from his first jab). I found a website that explains more about the shot and how to give it to yourself here:http://pegintron.com
I also have learned from the forum folk that the Rebetol (ribavirin) pills are fat soluable, so I need to be sure to take these with food that contains some good fat to help with absorption. It was recommended to eat part of your meal, then take your pills, then continue eating. Some healthy fats (the yummy omega-3s) that I will eat include nuts (brazil, walnut, almond, cashew), avocado (love guacamole), seeds (flax, pumpkin, sesame, sunflower), salmon, sardines, mackerel, trout and eggs (the ones I buy have 600 mg of omega 3s). Also, recommended was to eat yogurt with probiotics to help your tummy combat all these harsh meds.
I want to give huge kudos to the incredible internet forum mentioned above that I discovered a few weeks ago http://ronmetcalfe.com/hepcforum. It's a fantastic support for those living with and fighting the hepatitis c virus. I am learning so much there that I know will help me during treatment, plus it's just nice to be able to support others who are going through the same thing.
I've been trying to prepare as much as I can for the possible side effects of treatment - stocking up my arsenal and getting my 'game face' on! I've heard that anywhere from 10-20% of people doing HCV treatment experience minor or NO side effects, 10-20% of people experience severe sides (and have to stop), but that the majority in the middle have side effects that are manageable. I like to learn everything I can, plan for everything I can, and then, only then, I'm able to relax and let what will be, BE. If I don't experience any sides or they're minor, that'll be amazing...otherwise, hopefully I'll be prepared and know what to do for them.
Seems everyone I've talked to or read about have said that you will most likely experience "flu-like" symptoms from the interferon shots (actually heard a combination of the worst flu you ever had and the worst hang-over you ever had). I'm planning to give my jabs on Thursday nights before bedtime. Kevin's schedule has changed and now he will be home with us on Friday, Saturday and Sunday, so this will allow him to be home for Emma if I'm feeling out of sorts from the shot.
I've got lots of bottled water stocked up, as well as extra-strength tylenol, but I still need to find an OTC sleep aid. Still trying to work out exactly when to take the tylenol....how long after the shot? And if I should take it also before? Apparently the reaction time is different according to the maker of the drug....I'll be using the pegintron 'redipen' from Schering-Plough. My new internet friend, KennyG, (who is doing this same trial but in Alabama) will be starting this Friday, so I'm waiting to learn from his first jab). I found a website that explains more about the shot and how to give it to yourself here:http://pegintron.com
I also have learned from the forum folk that the Rebetol (ribavirin) pills are fat soluable, so I need to be sure to take these with food that contains some good fat to help with absorption. It was recommended to eat part of your meal, then take your pills, then continue eating. Some healthy fats (the yummy omega-3s) that I will eat include nuts (brazil, walnut, almond, cashew), avocado (love guacamole), seeds (flax, pumpkin, sesame, sunflower), salmon, sardines, mackerel, trout and eggs (the ones I buy have 600 mg of omega 3s). Also, recommended was to eat yogurt with probiotics to help your tummy combat all these harsh meds.
I want to give huge kudos to the incredible internet forum mentioned above that I discovered a few weeks ago http://ronmetcalfe.com/hepcforum. It's a fantastic support for those living with and fighting the hepatitis c virus. I am learning so much there that I know will help me during treatment, plus it's just nice to be able to support others who are going through the same thing.
The forum is also how I found KennyG in Alabama and Beth in Indiana, who will be doing this same trial with me. Amazing! There are somewhere around 400 people in the US enrolled in this trial and the three of us were able to find each other on the internet! It really comforts me to have connected with them and to know we'll 'have each other' as we go along. Brilliant!! YAY to the web forum that made that possible!
Saturday, April 21, 2007
Life presents a fork in the road
The strain of Hepatitis C that I contracted has proven to be resistant to the current standard chemo that is offered to HCV patients. That, along w/ the tales of horrific side affects and the length of treatment (more or less a year), is what convinced me to decline treatment up until this point.
Instead, for the past 11 years (since I first got the notice from the Blood Bank announcing that I had HCV), I've given up alcohol and tried to be be more aware of my liver and what it would like...and also became ever mindful of not exposing anyone to my blood.
Up until two weeks ago, my 'plan' was working out just fine. I'd truly accepted it. I even found that I had gotten to the point of sort of befriending this dragon who has taken up lodging in my body....we seemed to be co-existing pretty darned well. I had not had any symptoms (well, except for the occasional dead-bone tired days, which could also be attributable to my age :)so all was well.
My doctor has told me for years that I seemed one of those people whose body seemed to tolerate the disease pretty well - that the progression seemed very slow...that at my age (50ish) I'd most likely die of something totally unrelated to HCV. Okay - I could deal with that, I think. That last off-hand remark, along with persistently normal liver function tests that I've gotten all these years, gave me confidence in the course I'd chosen. I'd be just fine....or so I thought...
Then, about 2 weeks ago, I went in for my yearly blood work, expecting no surprises...boy was I wrong. Things appeared to have taken a huge turn. Although my liver enzymes were still, as always, normal....my vl (viral load - which measures the amount of virus in your blood) had jumped from 285,000 to 2.5 million! Whoa - what's that about?! Talk about a wake-up call! Turns out that the genotype ones are not only more resistant to treatment, but also can be more aggressive little buggers.
Anyway, as fate would have it, my doctor (Dr. Balart in New Orleans, who has written many papers and taken part in lots of these studies over the years since I've been his patient) is currently enrolling patients in a national trial that is aimed at - YES! - genotype 1, naive patients (naive means that you've not received prior treatment). Shering-Plough are in a phase 2 study with what Dr. Balart calls "a very, very exciting new drug that stops viral replication"....a protease inhibitor. This is the same sort of drug that proved to be the breakthrough treatment for HIV patients. Hmmm, you don't say? Yes, it sounds interesting...Well, how long do I have to think about it? A few days, you say??? Hmmm, I'll have to talk it over w/my dh, and will let you know...
I came home and discussed it all with my husband (and with lesser details, my almost 8 year old daughter). We spent a lot of time talking about the possible side affects, my chances of beating this thing (Dr. Balart said around 60%), about how living w/me during this time might be for both of them (I homeschool my daughter, so I'll need to line up lots of local support to help if I do have sides that impact us). After lots of talk, more research, and going with our gut instincts, we decided that we should go for it.
And just like that, our life has taken a totally unexpected turn.
Instead, for the past 11 years (since I first got the notice from the Blood Bank announcing that I had HCV), I've given up alcohol and tried to be be more aware of my liver and what it would like...and also became ever mindful of not exposing anyone to my blood.
Up until two weeks ago, my 'plan' was working out just fine. I'd truly accepted it. I even found that I had gotten to the point of sort of befriending this dragon who has taken up lodging in my body....we seemed to be co-existing pretty darned well. I had not had any symptoms (well, except for the occasional dead-bone tired days, which could also be attributable to my age :)so all was well.
My doctor has told me for years that I seemed one of those people whose body seemed to tolerate the disease pretty well - that the progression seemed very slow...that at my age (50ish) I'd most likely die of something totally unrelated to HCV. Okay - I could deal with that, I think. That last off-hand remark, along with persistently normal liver function tests that I've gotten all these years, gave me confidence in the course I'd chosen. I'd be just fine....or so I thought...
Then, about 2 weeks ago, I went in for my yearly blood work, expecting no surprises...boy was I wrong. Things appeared to have taken a huge turn. Although my liver enzymes were still, as always, normal....my vl (viral load - which measures the amount of virus in your blood) had jumped from 285,000 to 2.5 million! Whoa - what's that about?! Talk about a wake-up call! Turns out that the genotype ones are not only more resistant to treatment, but also can be more aggressive little buggers.
Anyway, as fate would have it, my doctor (Dr. Balart in New Orleans, who has written many papers and taken part in lots of these studies over the years since I've been his patient) is currently enrolling patients in a national trial that is aimed at - YES! - genotype 1, naive patients (naive means that you've not received prior treatment). Shering-Plough are in a phase 2 study with what Dr. Balart calls "a very, very exciting new drug that stops viral replication"....a protease inhibitor. This is the same sort of drug that proved to be the breakthrough treatment for HIV patients. Hmmm, you don't say? Yes, it sounds interesting...Well, how long do I have to think about it? A few days, you say??? Hmmm, I'll have to talk it over w/my dh, and will let you know...
I came home and discussed it all with my husband (and with lesser details, my almost 8 year old daughter). We spent a lot of time talking about the possible side affects, my chances of beating this thing (Dr. Balart said around 60%), about how living w/me during this time might be for both of them (I homeschool my daughter, so I'll need to line up lots of local support to help if I do have sides that impact us). After lots of talk, more research, and going with our gut instincts, we decided that we should go for it.
And just like that, our life has taken a totally unexpected turn.
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