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Ending Incivek 4 days early?
Hi there. I have 4 days left of Incivek and would like to stop early. I know it will seem dumb to many to not just tough out 4 more days, but the past week I've found my Achilles Heel of this tx; a giant hemorrhoid that has made life hell and has been bleeding the past three days. My wife has finally noticed that her supply of maxi-pads is dwindling. :o) Until now, tx has been only moderately difficult and probably typical for many (3 transfusions, the dreaded rash, an episode of retinal flashing that freaked me out, tiredness/weakness, etc.), but more or less manageable.
For my job I travel a lot around the country and perform a high-energy (well, adapted to low-energy lately) show for kids/families at schools and theaters and other venues. I had hoped to time the Incivek part of tx over the winter when I had specifically taken a few months off, but by the time all the pre-testing and paperwork and funding was all worked out, my treatment overlapped my touring schedule somewhat. I just spent a month traveling, including several shows and flights and even a drive in a motorhome from NY to WA. My wife didn't want to let me go until I was able to arrange for my father to travel with me for some of that time. Of course I felt terrible having my somewhat frail 72 yo father being my roadie, in essence, wheeling in my equipment and such, but it was a big help with my weakness as it has been and we got by pretty well.
I've been home for two weeks and the hemorrhoid started last week (I guess I can be super grateful it didn't happen sooner or during my trip). I've been writhing in pain for several days, unable to get out of bed and move around much, and dreading any BMs, which have to push their way around the hemorrhoid. Until now on tx I've been in a reasonably good mood, but this has made me incredibly irritable and probably difficult to be around. I've treated with prescription suppositories (inasmuch as I could get them in or to stay in) and the usual Prep H stuff and a lot of baths... has helped the situation a little but the hemorrhoid doesn't seem to be going away. I have an important show on Friday and more travel (almost non-stop through the summer at this point) starting next week. Not sure I could manage to perform or travel in my current condition, and this is how I support my family entirely and pay for some of the related costs of tx that aren't covered otherwise. Sunday would be my last scheduled Incivek dose, but I really would love to end the Incivek tonight to have a few days lead time to help clear things up (as I've been reading here and on other forums, the butt issues tend to go away pretty quickly when the Incivek is done).
I've contacted my doctor, but here's the problem... I've called there and talked with the nurses there last Thursday, Friday, Monday, yesterday and this morning, including questions about whether I can stop the Incivek early. They've promised to get back to me every day with a response from one of the doctors, but nobody has responded each time, so that's been really frustrating. The doctors aren't in every day but I would think that would be important enough to follow-up with, especially when a patient is asking about quitting something early. I know I shouldn't stop anything without the doctor's approval, but at this point I'm tempted to take their silence as an implied approval or blessing. I have G1 with low vl to begin with (about 580,000 after 9+ years of being diagnosed), no real HepC symptoms prior to tx, and tests have showed UND since 5-6 weeks into tx (the first time I got a vl test after starting tx). I'm aware of the percentage difference of SVR between 8 weeks and 12 weeks, and I'm willing to take the chance that 11.5 weeks is probably a negligible difference with my history. I definitely plan to continue the riba/Pegasys tx through the duration, but any break on the Incivek would be fantastic right now.
Anyway, I just needed to share/vent, and I really appreciate your comments, recommendations, etc. I wish I'd have frequented these forums sooner in my tx, but they've been a great source of knowledge and comfort the past several days.
For my job I travel a lot around the country and perform a high-energy (well, adapted to low-energy lately) show for kids/families at schools and theaters and other venues. I had hoped to time the Incivek part of tx over the winter when I had specifically taken a few months off, but by the time all the pre-testing and paperwork and funding was all worked out, my treatment overlapped my touring schedule somewhat. I just spent a month traveling, including several shows and flights and even a drive in a motorhome from NY to WA. My wife didn't want to let me go until I was able to arrange for my father to travel with me for some of that time. Of course I felt terrible having my somewhat frail 72 yo father being my roadie, in essence, wheeling in my equipment and such, but it was a big help with my weakness as it has been and we got by pretty well.
I've been home for two weeks and the hemorrhoid started last week (I guess I can be super grateful it didn't happen sooner or during my trip). I've been writhing in pain for several days, unable to get out of bed and move around much, and dreading any BMs, which have to push their way around the hemorrhoid. Until now on tx I've been in a reasonably good mood, but this has made me incredibly irritable and probably difficult to be around. I've treated with prescription suppositories (inasmuch as I could get them in or to stay in) and the usual Prep H stuff and a lot of baths... has helped the situation a little but the hemorrhoid doesn't seem to be going away. I have an important show on Friday and more travel (almost non-stop through the summer at this point) starting next week. Not sure I could manage to perform or travel in my current condition, and this is how I support my family entirely and pay for some of the related costs of tx that aren't covered otherwise. Sunday would be my last scheduled Incivek dose, but I really would love to end the Incivek tonight to have a few days lead time to help clear things up (as I've been reading here and on other forums, the butt issues tend to go away pretty quickly when the Incivek is done).
I've contacted my doctor, but here's the problem... I've called there and talked with the nurses there last Thursday, Friday, Monday, yesterday and this morning, including questions about whether I can stop the Incivek early. They've promised to get back to me every day with a response from one of the doctors, but nobody has responded each time, so that's been really frustrating. The doctors aren't in every day but I would think that would be important enough to follow-up with, especially when a patient is asking about quitting something early. I know I shouldn't stop anything without the doctor's approval, but at this point I'm tempted to take their silence as an implied approval or blessing. I have G1 with low vl to begin with (about 580,000 after 9+ years of being diagnosed), no real HepC symptoms prior to tx, and tests have showed UND since 5-6 weeks into tx (the first time I got a vl test after starting tx). I'm aware of the percentage difference of SVR between 8 weeks and 12 weeks, and I'm willing to take the chance that 11.5 weeks is probably a negligible difference with my history. I definitely plan to continue the riba/Pegasys tx through the duration, but any break on the Incivek would be fantastic right now.
Anyway, I just needed to share/vent, and I really appreciate your comments, recommendations, etc. I wish I'd have frequented these forums sooner in my tx, but they've been a great source of knowledge and comfort the past several days.
Hi .. I know you post is old but people may be interested about my experience traveling with Pegasys. I have both checked my bag with Pegasys and brought in carry one. When I went through security I told them I had prescription meds that needed to stay cold. They only asked if it had frozen ice packs. I confirmed they were and was OK. So I think as long as you use a frozen ice pack you are OK. The rule is no liquids.
Not sure I can help much on the air travel thing. In my case, the timing worked out where I was able to have the next Peg refill go to where I was flying to and be stored in a fridge there until I arrived. The trickier thing was keeping the doses cold while driving around from there, but I had a cooler with me and tried to make sure the motels I stayed at had a mini-fridge.
Was in the same boat, started wearing maxi pads and all. I took warm oatmeal baths and my Dr. prescribed 2% hydrocortizone cream for rectal use. Much better within 24 hours, but then you would have to get a hold of your Dr again.
Sorry the Incivek has wreaked so much havoc with the things. If it is any consolation most of the sides resolve themselves within a few weeks of taking the Incivek. You made it longer than I did before the irritability set in.
I would stick out the four days as well!
Not to hijack your thread since I may post a topic related to air travel and injectables (Pegasys) later. There isn't really a recent, decent thread with any viable suggestions (other than to ask the flight attendant put it in the fridge). I used the Frio pack in the past but....Anway, I hope you are around.
Feel better!!
I would stick out the four days as well!
Not to hijack your thread since I may post a topic related to air travel and injectables (Pegasys) later. There isn't really a recent, decent thread with any viable suggestions (other than to ask the flight attendant put it in the fridge). I used the Frio pack in the past but....Anway, I hope you are around.
Feel better!!
Finally got word back from one of my doctors, who said I should absolutely not stop the Incivek. That's fine... I just wanted to hear that. I wasn't going to just quit, but there were points over the last several days when the temptation to drop the Incivek early was very strong, and no word from the doc wasn't helping. And the good news is that today there seems to be improvement down there and I think it may be shrinking, finally, so I feel like I can probably make it.
I would try to get through the last 4 days but only you know how you feel and if you can or should finish. Hope your doctor gets back to you I would love to hear his advise.Did you tell them it's an emergency that you speak with your doctor?
I know you are wrestling with a difficult decision. I can only say it would be best to stay on the last four days. However, that being said, I stopped Incivek five days early because of the severity of my rash. It still took almost a month for that side effect to even begin to resolve. Even after stopping the Incivek, the rash continued to progress and spread for almost two weeks. It took several trips to the dermatologist and a series of prednisone to get it under control and on the run.
So there is no guarantee that simply stopping the Incivek will solve your hemorrhoidal problems. Yes, you will feel a little better about two weeks out -it's not going to be immediate.
I feel the Incivek is a real heavy hitter and because I was UND at weeks four and twelve, I am convinced it did its job and the RIBA and interferon are just cleaning up at this point, as it were.
Keep calling your doctor.
So there is no guarantee that simply stopping the Incivek will solve your hemorrhoidal problems. Yes, you will feel a little better about two weeks out -it's not going to be immediate.
I feel the Incivek is a real heavy hitter and because I was UND at weeks four and twelve, I am convinced it did its job and the RIBA and interferon are just cleaning up at this point, as it were.
Keep calling your doctor.
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