Hi!!!!! Is your hubby starting tx tonight or tomorrow? I have been sending out good vibes to you and hubby all day. I pray that he has no or little sx....the first shot usually brings something with it though....have him take non-aspirin at least one half hour before his shot and that should help........I gottcha in my thoughts....Good luck....and as Chev says..we are here for you. I believe that the spouse of someone on tx needs a place to vent, girlie, and it is here!!!!!!!!!
Thanks you guys! See what would I do without you?? Of course you are right. Hell, I'd probably have killed him Over dosing him, trying to kill that dragon! Thank God you all know I am way to emotional and you just calmly helped me , see, and now I can calmly relay this to him.
WOMAN KILLS HUSBAND WITH OVER DOSE OF PEG
I know this is a scary time for you and hubby. I really believe you guys should stick to the protocol, it's dangerous to mess around with medication. I know you feel you have to do something for him and there is so much you can do. You can encourage him to drink half his weight in water, (it isn't always easy) you can prepare healthy meals for him, low fat plenty of greens and liver friendly foods and one of the most important things to remember is to keep his tx journey as stress free as possible, that will help him no end. He needs you and it sounds to me as though you will be there for him.
BTW, I am a 1B PegIntron, mix my own meds, clear at 12 wks and 24 wks, minimal and manageable sx, just did shot 30/48.
Very best of luck to you both:).
Thank you guys for all that! I guess I was just devestated when he didnt get Pegacy. Getting the PEG also meant he may get the reg dose or a lower dose which is part 2 of the trial. Most of you have taught us well about being agressive and I felt disapointment. But Ok it is another day. He and Olivia went to Louisiana today and he will start upon his return, and then we will see how he reacts. But now Ya know I'm blaming my disapointment on some of you that go after the dragon with all you've got, I wanted to be able to do that with Billy.
But this is only the beginning right!
Have a GREAT WEEKEND! and thanks for all your patience.
I'll be posting when he does Shot 1 this weekend!
LOU HaHaHa Sorry just had to laugh.....how did you think you were going to handle all the woman in a free for all forum? Best of luck!
My husband did Peg the second time, and there was always a lot left over--I don't remember his dose, but he is a big guy.
PLEASE don't try to use more than indicated. You don't know how many milligrams you are getting. This stuff is not benign--interferons can kill if used improperly. If he gets a lot of bad sides from getting too much, they could drop him out.
Did you use powder? Thanks
I'm doing the peg-intron and do .5 each week. There is always some med left in the bottle but I only use the .5.
Some advice - tell your husband to take it easy the first couple days just to see if any sx set in. My first 2-3 wks were pretty bad but have been very tolerable since. I'm doing 46/48 tonight. Some people don't have the sx so I'll wish your husband luck in that area.
Good luck to you both.
Ok he just showed me the drill. He is to draw 4.1 back out of the vial. Does that make sense? He is 170 lbs.
he is in a trial, so the vials might not be the same(most likely) to what the non trial people are using. No one can tell you if it is right amount because no one knows how much is in the vial, not even the participants. If you think that he got the lower dose and you don't care if the study is screwed up, then draw ALL the liquid into the syringe, maybe that will give him full dose. No one can answer your question, really, the vials are not the same.
sorry
yah, cutie is right, as i said earlier it is weight based, but actually, with the trial, i wonder if there is a way to find out how much is in it.......ok, just thinking out loud....i wonder if the day after his first inject, he feels really nothing, he mighten take more the following week....yikes, this is a tough one, and a sensitive one, legalities etc. i know many have always taken ALL the shot, every last drop in the vial....and managed fine....i guess its a wait and see thing right now dear....if he has little or no re action, i'd gamble taking a bigger shot...i was taking almost all of mine the whole time....it always felt awful throwing out that liquid gold....but ....well....maybe it is best to do as is recommended and have faith that it is doing its job!!!
sorry sweetie, i know you are both on pins and needles...and it MUST be very difficult and frustrating not knowing for sure what his dose is...hang in there, give him all out love and support too....this has been a LONG time coming and i'd like to really believe that it will be alright for him
loads of love
kimmy
Ok , listen It is a powder and he draws up 7 saline. Then mix it with the powder and draws up 4.1 there will be plenty left over. They told him to bring back the leftover powder. I just feel sure we are screwed and on the low dose. I am so mad at God right now.Please bear with me, I'll be better tomorrow. If there is more than enough powder in it why can't we draw 5 out instead of 4.1? I'm sorry you guys probably think I'm an idiot. {ok shutup,I know I am} But am I making any sense with this? WHAT HAPPENS IF HE DOES DRAW 5 INSTEAD OF 4.1!
man you are making me dig in old files...i weighed 189 at start of tx....5 was the dose ..i had always worried when i dropped to 158 if i was not killing myself..but i had room to self adjust doses...go to www.projectsinknowledge.com...the txreporter has good info on the weightbase dosing of peg and riba...4.1 sounds about right for your hubby...but he can always sneak a little more out of the vial...i did...but never the whole punchbowl
I have been on Peg for almost 6 months and although I have ran the gamut of sides, they have been manageable and I have maintained. I have a friend who was on Peg for 3 months but taken off because of blood results and is now on Pegasy, he finds the Pegasy more difficult to deal with. Guess it is the luck of the draw and highly individualized. I wish your husband luck.
Couch
okay , you have 2 vials....he is taking what i took.....one is sterile water, one is the peg 'powder'...once you draw up the 7 units of sterile water, you THEN inject that water INTO THE PEG vial...thus mixing it all up....there is NO powder left to take back.....then, they are telling him to only draw up 4 units of the peg and inject that.....he can inject more, unless of course they are asking him to bring THAT vial BACK with the additional peg in it to confirm he is taking what he is supose to be taking....although....he CAN get around that too.....(these damn trials, bless them and curse them)......we'll talk!
opps...okay, just re thought this....i always drew up 7 units of water, (normal) to inject into the peg, i then withdrew 5 units of the mixture and injected that....but that was based on my weight and the 'amount' of meds for my body....125lbs....
now, without knowing what weight dose he is given its difficult to know what to suggest other than follow the trial orders....my box, and packaging, of meds was banded by a redish color....i didn't keep anything from my meds to refer back to...
yup powder...and ringy is correct mix with 7 shoot 5...sometime 5.5 in the beginning...sometimes 4.5 when numbers dropped...never did nueop or procrit
and if they want the lil bit left...just tell them you draw up more and squirt it out getting rid of bubbles...winkwink
the problem is that if they feel he is not following the protocol, they might drop him altogether. I don't think you are willing to chance that?
It is a risk participants take when they accept been part of a trial.
If they try to make their own rules, they might be out, so you have to think this through. as a trial participant, he does not call the shots, that is the big drawback. tread carefully.
Worriedwife.....Sorry that it appears that you got lost in this thread. You will not know how he will respond until he has his first PCR after he starts the meds. We all responddifferently.
Having type 1 is not as good as the other types. It takes a "minimum" of 48 weeks to kill it. That number should depend on how he responds. His load is not all that high....so that is good. His damage levels are not bad either....so that is good. Fight for the earliest PCR test you can get.....4 weeks, 8 weeks, 12 weeks. That will tell you how he is responding to the meds.
Best of luck to you.........
Sherr.....You never said what the "strength" of his Peg is. You need that to see if he is getting enough. Even if it is the lower dose....so what? Most trials start at a certain dose and after they get their info all patients are allowed full dose to completion. Check the trial rules. You elected to do this trial instead of going it on your own. That is a hazard we face in doing trials. To do more than what is prescribed could get him kicked out of the trial all together....and then where would you be? Or if he does too much it could lower his blood counts to a point where a reduction is necessary. Trials don't normally give blood boosters. If you want to do this trial then I think you should stick with their protocol. Thats just my personal opinion.
The other thing is....NO WAY would I let him go driving off on a long trip right after he does Peg/Intron for the first time. I did that stuff and it kicked my a$$.....and many others too. The beginning was the worst part. It would be very dangerous for him to be off driving if those sides kick in.
Keep us informed as to how he's doing....
Good Luck...........
hey sher...yah....you know, that was what i was on and the first shot was the worst..talk about ass-kickin'..chills turned to rigors, teeth chattering so badly i thought i'd chip them, freezing, vomiting, migrain like headache, eyes hurt, body killed!! it hurt so bad and on and on...it did get better or 'easier' but maybe this one is right....maybe he should do a 'wait and see', before making plans to travel with your wee one....maybe he won't re act that badly, but why risk it....he will no doubt be able to do this trip a few days later.....just a thought...at the very least for his first injecion anyway.....might surprise us all and have little to no sides...it could happen
i was on peg...it's weight based...i belive the dose was 120/5..it should be on the box
He is on a trial....3 groups Pegacy or PEG....IF you were chosen for PEG there are 2 doses.Today he was randomized and He got the peg. He is to fill the syringe up to the number 4 ...which leaves alot left in the vial to throw away. So I think he must have got the small dose TOO! WE really need some help here!
All I can tell you is that when I first came here a little over year ago, it was pretty close to half and half peg and pegasys. The only difference anyone talked about was sides were a little worse w/ peg.People who had taken both said that, but doctors said no difference. I'll take patients word for it. All I can reccommend is that you talk to your doc, and insist on Pegasys next month. I wonder why you didn't find out his preference before med order, but I don't think it's too late. I've never heard of anyone changing during tx. but I would insist they give me a da-- good reason why I couldn't change, before I would continue w/ peg. Just my 2 cents worth. Joni
thank you for the hope. maybe can keep each other informed and maybe we can work through this together.
thanks again