Aa
Neumega-Anyone ever use it?
Hello All!
Back from the hematologist. My platelets have dropped to 41 and to continue tx I must start on Neumega. My GI won't budge on 50 but agreed to let the hematologist watch if it did go below and here I am. Ins agreed to pay if below 45. From what I read, this is nasty stuff.
He also made a comment about the Tylenol class of drugs having an effect on platelets and wants to try something else than T3 for my bone pain, which is quite bad. We are going to try skipping Neup this week to see if that is the cause since I bounce back real quick with Neup. He wants to try Clebrex for the pain but will have to fight with ins on that.
He also is checking into upping Procrit. Already at 80 per week. Anyone hear of taking more than 80? HGB is staying at 9.0.
Also have an appt for a second opinion on extending since I am positive for cryo.
I know that is a lot of questions/requests but I'm a bit scared and can't think real clear right now. Any comments or shared experiences would be great. If I don't extend I have 5 weeks left, maybe four, heck maybe six! Almost there anyway.
Thank you all,
miss
Back from the hematologist. My platelets have dropped to 41 and to continue tx I must start on Neumega. My GI won't budge on 50 but agreed to let the hematologist watch if it did go below and here I am. Ins agreed to pay if below 45. From what I read, this is nasty stuff.
He also made a comment about the Tylenol class of drugs having an effect on platelets and wants to try something else than T3 for my bone pain, which is quite bad. We are going to try skipping Neup this week to see if that is the cause since I bounce back real quick with Neup. He wants to try Clebrex for the pain but will have to fight with ins on that.
He also is checking into upping Procrit. Already at 80 per week. Anyone hear of taking more than 80? HGB is staying at 9.0.
Also have an appt for a second opinion on extending since I am positive for cryo.
I know that is a lot of questions/requests but I'm a bit scared and can't think real clear right now. Any comments or shared experiences would be great. If I don't extend I have 5 weeks left, maybe four, heck maybe six! Almost there anyway.
Thank you all,
miss
Hopefully your platelets will be back up by the time you see the new dr. When do you go? When is the Neumega coming? If it is like Neupogen or Neulasta it works quickly.
I know what you mean about exhaustion and you are so much further along than I am. I think these low white cells and platelets do wear us down too. Pretty bad when the cure is worse than the tx!
Jamacia, mon! Here I come. No bone pain yet, it's been six hours so far.....
I may have to swing by flguy's and pick up some procrit to keep me going if I need it.
I know what you mean about exhaustion and you are so much further along than I am. I think these low white cells and platelets do wear us down too. Pretty bad when the cure is worse than the tx!
Jamacia, mon! Here I come. No bone pain yet, it's been six hours so far.....
I may have to swing by flguy's and pick up some procrit to keep me going if I need it.
My current GI won't extend tx (he is oh so conservative) but the consult I have with another doc in a couple weeks may agree that with the cryo I should extend. But, with platelets that low, its a **** shoot. Better to possibly live with the virus or extend and chance more permanent stuff from the tx? Dunno. I'm getting pretty exhausted too.
You're going to be gone two weeks? Wow, that could be tough with the Arenesp, without I should say. Boy, I hope you are okay. Maybe the fresh air and good weather and all the good food and the beauty will make it all okay til you get back. It's a nice thought anyway.
Do get online and check in. Everyone needs to be able to picture all that beauty in their heads. Then, when Brian Fog or Brenda Fog visits, we can get that look on our face, shake our head and say, "Oh, I just went to Jamaica for a minute. What did you say?"
Here's to a great trip with no sx problems!
miss
You're going to be gone two weeks? Wow, that could be tough with the Arenesp, without I should say. Boy, I hope you are okay. Maybe the fresh air and good weather and all the good food and the beauty will make it all okay til you get back. It's a nice thought anyway.
Do get online and check in. Everyone needs to be able to picture all that beauty in their heads. Then, when Brian Fog or Brenda Fog visits, we can get that look on our face, shake our head and say, "Oh, I just went to Jamaica for a minute. What did you say?"
Here's to a great trip with no sx problems!
miss
So you aren't sure if your dr. wants you to extend yet? Or you haven't decided? You have been through a lot and that Cryo sounds yucky. I think my mother has that. When will you know if you are extending? You do 48 weeks?
I just got my Neulasta shot and he wouldn't give me the Aranesp because my #'s aren't low enough YET. My worry is they will be next week and I won't have any choice but to suffer w/ anemia again. Hopefully not!
I think I am more worried about airports and traveling than the stay itself. John listed me as disabled on the airline tix. Then if I need a wheelchair, I can get one.
I dont' think the Aranesp gives me bone pain. Hope you have a bone pain free week without you neupogen!
I just got my Neulasta shot and he wouldn't give me the Aranesp because my #'s aren't low enough YET. My worry is they will be next week and I won't have any choice but to suffer w/ anemia again. Hopefully not!
I think I am more worried about airports and traveling than the stay itself. John listed me as disabled on the airline tix. Then if I need a wheelchair, I can get one.
I dont' think the Aranesp gives me bone pain. Hope you have a bone pain free week without you neupogen!
It will be interesting to see if your bone pain lessens with no Neupogen this week. Mine comes and goes,but is REALLY bad after the neulasta shot. I have to get one today. YUCK. Your abs Nuetrofils are your ANC. My hemo and I track these and the WBC to see if I need the Neulasta.
I am not sure if the Aranesp gives me sx. The first shot didn't. Of course I was so sick with anemia, maybe I didn't notice. Maybe you can get it in your dr's office instead of a script. I sure wish my dr. would give me some procrit, at least, to take with me to Jamacia.
Where I am going they have room service 24/7 included. They fill your little frig full of anything you want, including bottled water. I doubt they give Ensure though. There are 7 different restaurants, so I won't have hubby saying, "what's for dinner?" If he does, I can send him to the room menu or one of the restaurants. You can even eat in the pool bar. When I had a pinched nerve several years ago, I sat in that pool all the time up to my neck and it helped a lot. We also have wireless internet in the lobby, so I may check in here while I am there.
I did water aerobics last time and liked it. It is easier on the body for me. I am hoping they have that again. There is lots of water sports and a gym and golf course. Since I can't do the drinking games, I am wanting to do some of the more healthy activities. It is hard when your legs etc. don't want to move at all. Especially with that bone pain.
I think my bone pain went away after the Neulasta wore off, 10 days. I still have some, but nothing like that first 10 days.
I sure hope that Neumega works. My platelets go up and down. It is early in tx for me. It would be great if the dr would consider that drug too, if I needed it.
Why do you think you may have to extend?
I am not sure if the Aranesp gives me sx. The first shot didn't. Of course I was so sick with anemia, maybe I didn't notice. Maybe you can get it in your dr's office instead of a script. I sure wish my dr. would give me some procrit, at least, to take with me to Jamacia.
Where I am going they have room service 24/7 included. They fill your little frig full of anything you want, including bottled water. I doubt they give Ensure though. There are 7 different restaurants, so I won't have hubby saying, "what's for dinner?" If he does, I can send him to the room menu or one of the restaurants. You can even eat in the pool bar. When I had a pinched nerve several years ago, I sat in that pool all the time up to my neck and it helped a lot. We also have wireless internet in the lobby, so I may check in here while I am there.
I did water aerobics last time and liked it. It is easier on the body for me. I am hoping they have that again. There is lots of water sports and a gym and golf course. Since I can't do the drinking games, I am wanting to do some of the more healthy activities. It is hard when your legs etc. don't want to move at all. Especially with that bone pain.
I think my bone pain went away after the Neulasta wore off, 10 days. I still have some, but nothing like that first 10 days.
I sure hope that Neumega works. My platelets go up and down. It is early in tx for me. It would be great if the dr would consider that drug too, if I needed it.
Why do you think you may have to extend?
Extending-People with cryo have a history of relapsing. I guess the virus can sort of hide somewhere as long as you still have some active cryo floating around. It's hard to find info on cryo but from what I have gathered, at its worst, you can have kidney failure. Don't think I am that bad but don't ever want to be either!
Cryo is a protein in the blood that, when exposed to cold, makes the blood thicken so the blood doesn't flow. So, hands and feet can freeze, neuropathy in hands and feet causing nerve damage and a host of other things. Everything I have read leads me to believe I have had it for years but noone ever thought to check.
If we figure bone pain coming from Procrit, maybe he can talk the ins into allowing Arenesp but that will take awhile, if he can talk them into it. It sounds cheaper so I would think the ins. would jump at it but who knows with them.
It sounds like you have a great trip planned and have all your bases covered. Have a great time. Is there room in a suitcase for a stowaway, lol! Have a great time.
miss
Cryo is a protein in the blood that, when exposed to cold, makes the blood thicken so the blood doesn't flow. So, hands and feet can freeze, neuropathy in hands and feet causing nerve damage and a host of other things. Everything I have read leads me to believe I have had it for years but noone ever thought to check.
If we figure bone pain coming from Procrit, maybe he can talk the ins into allowing Arenesp but that will take awhile, if he can talk them into it. It sounds cheaper so I would think the ins. would jump at it but who knows with them.
It sounds like you have a great trip planned and have all your bases covered. Have a great time. Is there room in a suitcase for a stowaway, lol! Have a great time.
miss
Aranesp does sound nicer just for the fact it is every two weeks. But from what I am reading they are the same, both are pegylated. There must be something different in the manufacturing that lets Aranesp last longer? My ins doesn't cover Aranesp either. Darn it! Mostly, I think I am just so close to the end of 48 weeks I don't have a lot left to work with. If the new doc says I shuld extend, I'm not sure how I'll handle it. Stopping or continuing scares the pants off me. Pretty sure if I don't get platelets up I will have to stop.
While you're having such a good time down yonder (can you tell I'm jealous?), try some light aerobics to help the hgb stay up. I've been told that fresh tomatoes help rbc's too. Remember, all those cells are made in the bones and if they don't get any activity production will suffer.
My legs hurt so much I have a real hard time staying very active. I push myself and always pay for it. Starting to wonder if it is real bone pain or something else. Maybe the cryo. I've felt it over the years but never even close to what I feel now. Not doing Neup for a week might help figure it out. Maybe it is the Procrit too. You hurt after Aranesp and then it gradually decreases?
Still waiting for pharmacy to call and say Neumega is ok'd. Hoping by at least the weekend. I changed my blood draw from Tues to Thur, closer to Peg night on Friday. Maybe all the helper meds will have done their job and numbers will be up.
I have searched and cannot find anyone who said they have taken Neumega so its new territory I guess. I'll let everyone know how it goes. But, my phone is gonna be right beside me incase I get the bad side effects. lol
I do all my own shots. Used to think I never could but now would rather do it since I can go slower if it burns or hurts or change the needle angle, whatever to make it hurt less. I am running out of, shall we say, leg room?
ANC-I don't really track that but probly should. The GI does. I hurt pretty much all the time but worse after each shot and better by Thursday or Friday before Peg. Really afraid I could fall if my legs don't do what I tell them. It better go away whenever I'm done!
If I don't get to say it before you leave, have a wonderful time and please stay safe. Don't pick up some bug and get sick. Do you have a water bottle with a filter on it? Outdoor stores may have one. Good luck to you and thanks.
Miss
While you're having such a good time down yonder (can you tell I'm jealous?), try some light aerobics to help the hgb stay up. I've been told that fresh tomatoes help rbc's too. Remember, all those cells are made in the bones and if they don't get any activity production will suffer.
My legs hurt so much I have a real hard time staying very active. I push myself and always pay for it. Starting to wonder if it is real bone pain or something else. Maybe the cryo. I've felt it over the years but never even close to what I feel now. Not doing Neup for a week might help figure it out. Maybe it is the Procrit too. You hurt after Aranesp and then it gradually decreases?
Still waiting for pharmacy to call and say Neumega is ok'd. Hoping by at least the weekend. I changed my blood draw from Tues to Thur, closer to Peg night on Friday. Maybe all the helper meds will have done their job and numbers will be up.
I have searched and cannot find anyone who said they have taken Neumega so its new territory I guess. I'll let everyone know how it goes. But, my phone is gonna be right beside me incase I get the bad side effects. lol
I do all my own shots. Used to think I never could but now would rather do it since I can go slower if it burns or hurts or change the needle angle, whatever to make it hurt less. I am running out of, shall we say, leg room?
ANC-I don't really track that but probly should. The GI does. I hurt pretty much all the time but worse after each shot and better by Thursday or Friday before Peg. Really afraid I could fall if my legs don't do what I tell them. It better go away whenever I'm done!
If I don't get to say it before you leave, have a wonderful time and please stay safe. Don't pick up some bug and get sick. Do you have a water bottle with a filter on it? Outdoor stores may have one. Good luck to you and thanks.
Miss
Aranesp is the pegalated form of Procrit. It lasts 2 weeks.
Yes, that is a mess. I would be worried too. Platelets go up and down quickly I have noticed. Mine got down to 70+ and then went up after the Neulasta shots. Now my ANC is .6 and WBC is 1.7, so I have to get the Neulasta tomorrow before the trip to Jamacia.
My Hgb is not at 11, so I am not sure he will give me the procrit before I leave. It is at 12+, but drops quickly once it starts going down. I am worried I will be anemic by the end of my trip. Wish he would just give me some procrit to go!
When do you get your shot? Are you doing them yourself? I am interested in the sx. From what I read they seem the same as what we already go through- bone pain! Joy. It's good your dr. is willing to give it to you though. I haven't heard anyone else getting it. I have read people not starting or quitting tx because of low platelets though. I guess you are lucky there!
Do you ever feel the bone pain when your ANC is too low? I am feeling it today and I haven't had the shot yet.
Yes, that is a mess. I would be worried too. Platelets go up and down quickly I have noticed. Mine got down to 70+ and then went up after the Neulasta shots. Now my ANC is .6 and WBC is 1.7, so I have to get the Neulasta tomorrow before the trip to Jamacia.
My Hgb is not at 11, so I am not sure he will give me the procrit before I leave. It is at 12+, but drops quickly once it starts going down. I am worried I will be anemic by the end of my trip. Wish he would just give me some procrit to go!
When do you get your shot? Are you doing them yourself? I am interested in the sx. From what I read they seem the same as what we already go through- bone pain! Joy. It's good your dr. is willing to give it to you though. I haven't heard anyone else getting it. I have read people not starting or quitting tx because of low platelets though. I guess you are lucky there!
Do you ever feel the bone pain when your ANC is too low? I am feeling it today and I haven't had the shot yet.
Thanks for responding. I posted late last night and am guessing this thread got lost or noone has anything more to add.
Procrit is pegylated, that's why it didn't help me much when I split it into two shots.
I am skipping the Neupogen to try to determine if the bone pain is from that or not. If my whites drop, we know they will come right back up with more Neup, always has.
If I don't try to Neumega, the GI will reduce dramatically or stop all together. My guess is the later with #'s so low. Neumega also effects RBC or hgb which is why I think he wants to up Procrit.
The part about Tylenol effecting platelets was a bit disconcerting and was hoping someone else had heard it. Back to Google!
Man, what a mess. Thanks again.
miss
Procrit is pegylated, that's why it didn't help me much when I split it into two shots.
I am skipping the Neupogen to try to determine if the bone pain is from that or not. If my whites drop, we know they will come right back up with more Neup, always has.
If I don't try to Neumega, the GI will reduce dramatically or stop all together. My guess is the later with #'s so low. Neumega also effects RBC or hgb which is why I think he wants to up Procrit.
The part about Tylenol effecting platelets was a bit disconcerting and was hoping someone else had heard it. Back to Google!
Man, what a mess. Thanks again.
miss
Here is a link I found. Sounds like similar pains that we get from the neulasta and Neupogen. Except the red eyes! I have that now and am not on neumega.
http://www.clltopics.org/Complications/neumega.htm
Keep us posted!
http://www.clltopics.org/Complications/neumega.htm
Keep us posted!
So sorry to hear about this! You have enough sx to deal with. I have heard Neumega is nasty too. Did he tell you what those sides are like?
Maybe you could ask about Aranesp, like procrit but pegalated. It seems to last me more than 2 weeks.
What a nightmare! I bet you are scared. This is not what you wanted to hear this close to the end, if it is the end.
Doesn't it sound like the Neumega is like Neulasta or Neupogen. Otherwise why would he take you off the Neupogen. Just a guess. They sure sound the same, huh? Let's hope the sx's aren't as bad as the others.
When do you start this? Does he give it to you?
Maybe you could ask about Aranesp, like procrit but pegalated. It seems to last me more than 2 weeks.
What a nightmare! I bet you are scared. This is not what you wanted to hear this close to the end, if it is the end.
Doesn't it sound like the Neumega is like Neulasta or Neupogen. Otherwise why would he take you off the Neupogen. Just a guess. They sure sound the same, huh? Let's hope the sx's aren't as bad as the others.
When do you start this? Does he give it to you?
Hi, I don't know any thing about the nuemega but using more then 80,000 units of procrit at one time is not good. The drug company recomends 60,000 units as max dose but some drs do give 80,000. My HGB was as low as 6.2 and I needed a tranfusion twice and still they wouldn't give me more then 60,000 units. However, they did start to give me 60,000 units every 5 days.
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