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Muscle Cramps and Spasms
My husband has been gets real bad muscle cramping/spasm in hands, feet, shoulders, & legs. It
Hey My Friend:
Sorry for the absence. I've had a fever for about 3-4 weeks now. The increased Nupogen for some reason makes me feel even worse but my ANC are gradually coming back up. I skipped labs this week because my platelets were back down to 55 and I just couldn't handle doc telling me we would have to stop treatment. I will probably be in a better frame of mind for that conversation next week and to beg for continuation. I seem to be springing a lot of leaks (bleeding) lately and bleeds quite a bit before stopping. I've basically gone into a counting the days that pass mode I suppose. I have 22 shots left and if the platelets can hang on I will complete. These past 26 weeks have been filled with ups and downs. I've reduced my medicines down now to where I am taking the Pegasys (150), Riba (1200) and Nupogen (300) and half of a Ambien (12.5). The fever seemed to have stopped yesterday its down to 98.2 and bone aches aren't nearly as bad. I hate to talk to my doctor about it because it just means more meds or more poking. I'm tired of feeling like a hog at slaughter. I know you understand that. Has everyone on the forum been doing okay? Dale PS Thanks for asking too!
Sorry for the absence. I've had a fever for about 3-4 weeks now. The increased Nupogen for some reason makes me feel even worse but my ANC are gradually coming back up. I skipped labs this week because my platelets were back down to 55 and I just couldn't handle doc telling me we would have to stop treatment. I will probably be in a better frame of mind for that conversation next week and to beg for continuation. I seem to be springing a lot of leaks (bleeding) lately and bleeds quite a bit before stopping. I've basically gone into a counting the days that pass mode I suppose. I have 22 shots left and if the platelets can hang on I will complete. These past 26 weeks have been filled with ups and downs. I've reduced my medicines down now to where I am taking the Pegasys (150), Riba (1200) and Nupogen (300) and half of a Ambien (12.5). The fever seemed to have stopped yesterday its down to 98.2 and bone aches aren't nearly as bad. I hate to talk to my doctor about it because it just means more meds or more poking. I'm tired of feeling like a hog at slaughter. I know you understand that. Has everyone on the forum been doing okay? Dale PS Thanks for asking too!
It's a tough road. Being this far in I hope your plates have stabilized to within a few points from cbc to cbc. I plateaued around 60-65 and others (I think maybe goof) was in your range without med reduction. At least it looks like you are on full dose peg/riba right now. Strange about the neup reaction. The only time it had that effect on me is when the doc substituted neulasta (pegylated neup) for the regular neup. Neulasta is longer lasting - mabe ask the doc about it. Hang in there DR. The weeks are battles, the war lasts another 22 battles. Sounds like a lot but today is only 24 hours and your halfway through today.
Cool! I had a studio on the Embarcadero. It was very fun back then. Meeting all the rock stars...boy I bet more than a few of them have this dreadful virus. They were way more into their stuff than I was. I painted buildings, walls, murals, trucks for the Starship etc. and album covers. We used oil paint or airbrush. I have a few of the old covers hanging in my house, but they are on wood or canvas, not posters. Those posters are great, I wish I had a few more of them. After hanging on walls in the 70's they didn't last long.
Just went to get my cereal and realized it is not Total One, but it is Fiber One with Honey Clusters. It's tasty.
Dale,
I am so sorry to hear you are doing so poorly. Do you have cirrhosis? Those platelets sure are low. Don't like that fever. I too am surprised that that is a Neupogen reaction. Perhaps you picked up some infection, and the Neupogen could not boost up the white blood count even for that.
sfbaygal-
Got that right -- must be hoards of old rockers with hep C. WIsh they would all come out of the closet. WHat a force that would be. I will be your work is awesome. Lived down the block from the Airplane for a couple of years. Loved it when they were practicing at the house.
I am so sorry to hear you are doing so poorly. Do you have cirrhosis? Those platelets sure are low. Don't like that fever. I too am surprised that that is a Neupogen reaction. Perhaps you picked up some infection, and the Neupogen could not boost up the white blood count even for that.
sfbaygal-
Got that right -- must be hoards of old rockers with hep C. WIsh they would all come out of the closet. WHat a force that would be. I will be your work is awesome. Lived down the block from the Airplane for a couple of years. Loved it when they were practicing at the house.
Welcome back Dale! Lots of folks been worried about you. That bleeding is something to be concerned about, I hate to say. I think it has more to do with the platelets too. Any chance you can get that Neumega? I'm afraid I am right behind you on this issue too. There just has to be a way to get the numbers up enough the keep the doc off your back. I'm sure your diet is good? I wish you the best here and please keep the forum informed as to how things are going.
FLGuy-I always was told the Neulasta was a quick pump that wouldn't last more than a day or maybe two. When the doc rushed me to ER for one of those, it pumped my numbers way, way high. Then the Neupogen took over. They said it would only last a few days too so by the time the next Peg shot arrives it is gone so another Neup shot the next day.
Doc also said the bone pain is probly from the Neup but lately I think I feel more from the Procrit. Been really whopping my legs til I asked for Handicap Parking, doing the Old Lady Shuffle. At least I hope the leg thing is from either Neup or Proc and will go away.
Hope your days all have many good moments in them.
miss
FLGuy-I always was told the Neulasta was a quick pump that wouldn't last more than a day or maybe two. When the doc rushed me to ER for one of those, it pumped my numbers way, way high. Then the Neupogen took over. They said it would only last a few days too so by the time the next Peg shot arrives it is gone so another Neup shot the next day.
Doc also said the bone pain is probly from the Neup but lately I think I feel more from the Procrit. Been really whopping my legs til I asked for Handicap Parking, doing the Old Lady Shuffle. At least I hope the leg thing is from either Neup or Proc and will go away.
Hope your days all have many good moments in them.
miss
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