Aa
how long before beginning tx?
I am a newbie to this forum- have only posted twice, but feel as though I know many of you already after pouring over posts for the past few weeks. (Thanks so much for all of the support and input already! ~Medicmommy has already given me some great advice and even a crash course in the lingo!) I feel blessed to have discovered all of you so early in this "process"!!!
I am genotype 3. (They did not give me an a or b- should they for 3?) YEAH! 24 weeks tx! I have an appointment with my current doc on Feb 20th. He is then referring me to the local teaching hospital due to their expertise in tx. of hepC. It sounds like I can probably get in there by the end of that week. SO, how soon should I be ready to begin tx??? I want to tackle this thing full force and be done with it. Is this something they can set me up with (med's, training, etc.) there at the appointment, or is there a lengthy process involved? I have already had the biopsy and a load of blood work, including geneotype, viral load, etc. The nurse who went over results with me, however, did not really give me much info. other than my genotype and VL. I am now armed with a LIST of questions and plan to get copies of everything while I am there on the 20th. I am assuming that the hosp. team of specialists will be the ones to actually start me on the tx. I just want to be prepared (mentally, emotionally, physically) for a time frame. It helps me to obsess less when I am being concrete and analytical about the whole thing. Breaking it down into steps. The when/where/how of it all. (believe me, analytical is NOT my normal state of mind! generally I am anything BUT.)
Again, thanks to all for welcoming me into your community!
~l.
I am genotype 3. (They did not give me an a or b- should they for 3?) YEAH! 24 weeks tx! I have an appointment with my current doc on Feb 20th. He is then referring me to the local teaching hospital due to their expertise in tx. of hepC. It sounds like I can probably get in there by the end of that week. SO, how soon should I be ready to begin tx??? I want to tackle this thing full force and be done with it. Is this something they can set me up with (med's, training, etc.) there at the appointment, or is there a lengthy process involved? I have already had the biopsy and a load of blood work, including geneotype, viral load, etc. The nurse who went over results with me, however, did not really give me much info. other than my genotype and VL. I am now armed with a LIST of questions and plan to get copies of everything while I am there on the 20th. I am assuming that the hosp. team of specialists will be the ones to actually start me on the tx. I just want to be prepared (mentally, emotionally, physically) for a time frame. It helps me to obsess less when I am being concrete and analytical about the whole thing. Breaking it down into steps. The when/where/how of it all. (believe me, analytical is NOT my normal state of mind! generally I am anything BUT.)
Again, thanks to all for welcoming me into your community!
~l.
Please do not get caught up too much in the 24 weeks hype. It's not only geno 3 but also 2 that lately doctors are catching on to the fact that there seem to be a lot more relapses than the stats tell us. However, that does NOT mean it won't happen to you.
Hopefully when you get your stats back you'll post them so people can disect them and let you know you've hit certain mile markers on time. Then you'll be in the clear for the 24. Personally I had to extend to 72 weeks because I didn't hit said mile markers...however I am SVR so it's the best thing I ever did for myself.
Don't really get caught up in all of this before you start though - just make sure you do know and realize that GETTING SVR IS THE PRIMARY FUNCTION, not how quickly you can get through treatment or anything like that. You have the BEST chance of getting rid of this disease the FIRST time you treat so you want to do it then!
There is a woman who posts on here named Kalio - she is the perfect one for yout o speak with.
Getting 'extra' meds stocked up is a very very good thing to do because we don sometimes make mistakes and botch a shot or the actual shot is no good. Remember - you're going to be on treatment for a while so it's not that important how quickly you start (even though I know you want to start asap).
**Most docs have us have a baseline eye test before hand. That held me up a few weeks because I didn't know about it and had to wait to get it.
**Also it's a good idea to start on a good antidepressent before treatment. My doc put me on Paxill a month beforehand because the interferon CAN cause severe depression - so I chose to take it prophalactically to make sure I didn't have to go off meds early.
Good luck!
Hopefully when you get your stats back you'll post them so people can disect them and let you know you've hit certain mile markers on time. Then you'll be in the clear for the 24. Personally I had to extend to 72 weeks because I didn't hit said mile markers...however I am SVR so it's the best thing I ever did for myself.
Don't really get caught up in all of this before you start though - just make sure you do know and realize that GETTING SVR IS THE PRIMARY FUNCTION, not how quickly you can get through treatment or anything like that. You have the BEST chance of getting rid of this disease the FIRST time you treat so you want to do it then!
There is a woman who posts on here named Kalio - she is the perfect one for yout o speak with.
Getting 'extra' meds stocked up is a very very good thing to do because we don sometimes make mistakes and botch a shot or the actual shot is no good. Remember - you're going to be on treatment for a while so it's not that important how quickly you start (even though I know you want to start asap).
**Most docs have us have a baseline eye test before hand. That held me up a few weeks because I didn't know about it and had to wait to get it.
**Also it's a good idea to start on a good antidepressent before treatment. My doc put me on Paxill a month beforehand because the interferon CAN cause severe depression - so I chose to take it prophalactically to make sure I didn't have to go off meds early.
Good luck!
Great list of abbrev's. One thing I saw that was a problem...Hemo is a Hemotologist (HGB is Hemoglobin) and Rhemy is a Rhematologist, and PCP primary care physican. ONC is an oncologist...thought I would add a few
Thanks!
Thanks!
Great of you to take time to share so much info. Your picture is so cool I hope tx has not been to hard on your hair. It is a great candidate for an in the wind shot. Ever think abpout submiting. Read you only have 3 shots to go. Hang in there!! GOOD LUCK! Have a ride for me if you have the strength. Was just in the basement sitting on my bike but it is7 below here today that ride would definately kill me way before HCV would!
Wow! That rocks! There is some on there I didn't know!
That will be incredibly helpfull to so many! You rock!
Deb
That will be incredibly helpfull to so many! You rock!
Deb
you can stare them down before you start and make sure that the meds know that you are in charge, not them. These meds are very sensitive that way.................
Oh, now you tell me! 3 shots to go and I could have been in charge of THEM!?
:} LL
Oh, now you tell me! 3 shots to go and I could have been in charge of THEM!?
:} LL
I always liked the idea of waiting a week or two after you get the meds before starting treatment. If you are like many, the refills come on a regular basis - every four weeks or so. By delaying the start, if you start, you give the refill process a head start so that you reduce the chances of getting squeezed if the process gets wonky down the road. Since it's important to take every shot and every pill on schedule you never want to be in the position of needing to take meds and not having them. Besides, by having them a little ahead of time you can stare them down before you start and make sure that the meds know that you are in charge, not them. These meds are very sensitive that way.
Wow! Thanks so much.
I will get copies of everything and post more info as I get it. I think it really helps to go armed with as much info as possible. Hopefully it will make doctors take me seriously.
What is considered HVL? I have seen such a wide range posted.
~l.
I will get copies of everything and post more info as I get it. I think it really helps to go armed with as much info as possible. Hopefully it will make doctors take me seriously.
What is considered HVL? I have seen such a wide range posted.
~l.
Here's some abr's. Lot of new people past couple mths., they can all print also.
CHC Chronic Hepatitis C
AHC Acute Hepatitis C
G or GT Genotype
GI Gastroenterologist
SOC Standard of Care
ITT Intent to Treat
Bx Biopsy
Dx Diagnosis
Sx Symptoms/Side Effects
Rx Prescription
Hx History
RVR Rapid Virological Response (4 Week PCR - UND
EVR Early Virological Response (12 Week PCR - UND or >2 Log Drop)
EOT End of Treatment
SVR Sustained Virological Response (UND 6 Months post TX end)
PCR Polymerase Chain Reaction
RT-PCR Reverse Transcription-Polymerase Chain Reaction.
TMA Transcription Mediated Amplification
BMI Body Mass Index
WHR Waist to Hip Ratio
VL Viral Load
HVL High Viral Load
LVL Low Viral Load
UND Undetectable Viral Load
Drug Acronyms
IFN Interferon (Alpha 2a / Alpha 2b)
NPIA Non-Pegylated Interferon Alpha
PegIFN Pegylated Interferon (Alpha 2a / Alpha 2b)
CIFN Consensus Interferon (Infergen/alphacon)
RBV Ribavirin
Riba Ribavirin
EPO Erythropoietin (Epogen/Procrit)
Neup Neupogen
Blood Test Acronyms
FBC Full Blood Count (same as CBC)
CBC Complete Blood Count (same as FBC)
LFT Liver Function Test
ULN Upper Limit of Normal
LLN Lower Limit of Normal
ALT Alanine Aminotransferase
AST Aspartate Aminotransferase
ALP Alkaline Phosphatase
GGT Gamma Glutamyl Transpeptidase
LDH Lactate Dehydrogenase
SGPT ALT used to be called Serum Glutamic Pyruvic Transaminase.
SGOT AST used to be called Serum Glutamic Oxaloacetic Transaminase
RCC Red Cell Count
HGB Hemoglobin
Hemo Hemoglobin
WCC White Cell Count
MCV Mean Corpuscular Volume
TSH Thyroid stimulating hormone (Also called: Thyrotropin)
TIW Tri Weekly (Three Times a Week, Thrice Weekly).
IU International Unit
CHC Chronic Hepatitis C
AHC Acute Hepatitis C
G or GT Genotype
GI Gastroenterologist
SOC Standard of Care
ITT Intent to Treat
Bx Biopsy
Dx Diagnosis
Sx Symptoms/Side Effects
Rx Prescription
Hx History
RVR Rapid Virological Response (4 Week PCR - UND
EVR Early Virological Response (12 Week PCR - UND or >2 Log Drop)
EOT End of Treatment
SVR Sustained Virological Response (UND 6 Months post TX end)
PCR Polymerase Chain Reaction
RT-PCR Reverse Transcription-Polymerase Chain Reaction.
TMA Transcription Mediated Amplification
BMI Body Mass Index
WHR Waist to Hip Ratio
VL Viral Load
HVL High Viral Load
LVL Low Viral Load
UND Undetectable Viral Load
Drug Acronyms
IFN Interferon (Alpha 2a / Alpha 2b)
NPIA Non-Pegylated Interferon Alpha
PegIFN Pegylated Interferon (Alpha 2a / Alpha 2b)
CIFN Consensus Interferon (Infergen/alphacon)
RBV Ribavirin
Riba Ribavirin
EPO Erythropoietin (Epogen/Procrit)
Neup Neupogen
Blood Test Acronyms
FBC Full Blood Count (same as CBC)
CBC Complete Blood Count (same as FBC)
LFT Liver Function Test
ULN Upper Limit of Normal
LLN Lower Limit of Normal
ALT Alanine Aminotransferase
AST Aspartate Aminotransferase
ALP Alkaline Phosphatase
GGT Gamma Glutamyl Transpeptidase
LDH Lactate Dehydrogenase
SGPT ALT used to be called Serum Glutamic Pyruvic Transaminase.
SGOT AST used to be called Serum Glutamic Oxaloacetic Transaminase
RCC Red Cell Count
HGB Hemoglobin
Hemo Hemoglobin
WCC White Cell Count
MCV Mean Corpuscular Volume
TSH Thyroid stimulating hormone (Also called: Thyrotropin)
TIW Tri Weekly (Three Times a Week, Thrice Weekly).
IU International Unit
Hi again,
RVR...Rapid Virological Response (what all want!)
UND..Undetectable Viral Load (also what we want!)
HVL...High Viral Load
SVR..Sustained Virological Response ('cured'), what we're going for!
Do post your bx results also.
Don't quote me on this, butI think teaching hospitals (most) have assistance programs if no insurance. I am in a trial, so all free :}
Do take note on all those with advice on Geno 3. Not as 'easily' treated as Geno 2.
Being 'concrete and analytical' does help, gives the feeling on some control in this.
You sound like your covering all base's and moving along well in this.
Good luck, LL
RVR...Rapid Virological Response (what all want!)
UND..Undetectable Viral Load (also what we want!)
HVL...High Viral Load
SVR..Sustained Virological Response ('cured'), what we're going for!
Do post your bx results also.
Don't quote me on this, butI think teaching hospitals (most) have assistance programs if no insurance. I am in a trial, so all free :}
Do take note on all those with advice on Geno 3. Not as 'easily' treated as Geno 2.
Being 'concrete and analytical' does help, gives the feeling on some control in this.
You sound like your covering all base's and moving along well in this.
Good luck, LL
OK- What is RVR????? What is UND???? HVL???? (high viral load?) I am still learning all this terminology!
My VL was 5,871,880....
Bx was "minimal damage" but did not know to ask about stage or grade. I'll get that next time I go in. (the 20th) The nurse was NOT helpful or informative AT ALL.
Thanks all! Any advice and info helps!
My VL was 5,871,880....
Bx was "minimal damage" but did not know to ask about stage or grade. I'll get that next time I go in. (the 20th) The nurse was NOT helpful or informative AT ALL.
Thanks all! Any advice and info helps!
Quote - am genotype 3. (They did not give me an a or b- should they for 3?)
In any Western country you will more than likely be a G3a. The other subtypes are found mostly in Asia. G3b is in Indonesia for example.
Quote - 24 weeks tx!
Not trying to scare you but G3s should consider extending if they are not UND at week 4.
The reason for this is that we have lousy response rates (40%apx) when not RVR and only do 24 weeks.
Whats your Viral load and Bx results as these help with Tx decisions. Some studies have shown that G3 HVL have poorer response rates for example.
Anyway all the best with your Tx.
CS
In any Western country you will more than likely be a G3a. The other subtypes are found mostly in Asia. G3b is in Indonesia for example.
Quote - 24 weeks tx!
Not trying to scare you but G3s should consider extending if they are not UND at week 4.
The reason for this is that we have lousy response rates (40%apx) when not RVR and only do 24 weeks.
Whats your Viral load and Bx results as these help with Tx decisions. Some studies have shown that G3 HVL have poorer response rates for example.
Anyway all the best with your Tx.
CS
Good for you deciding to tackle this right away. It's the best this to do. This virus is incideous and sneaks around silently (though usually slowly) destroying livers. Because of this I waited, with much regret now. Live and learn.
Yes, the docs/nurses will teach you exctly how to do the shots. They can also prescribe Rx's for side effects if you need it. I have always been a light sleeper, so I needed Lunesta. As for the other sx, so far (only the end of the 1st wk.of Tx) I have been able to do it med free. I drink a LOT of water. You would not believe how much better it makes you feel. A lot of dead virus needs to be washed away, and water is the best.
I use some supplements for aiding the process, and also for energy. The best I've found are at:
www.liverdoctor.com
Hope this helps.
Yes, the docs/nurses will teach you exctly how to do the shots. They can also prescribe Rx's for side effects if you need it. I have always been a light sleeper, so I needed Lunesta. As for the other sx, so far (only the end of the 1st wk.of Tx) I have been able to do it med free. I drink a LOT of water. You would not believe how much better it makes you feel. A lot of dead virus needs to be washed away, and water is the best.
I use some supplements for aiding the process, and also for energy. The best I've found are at:
www.liverdoctor.com
Hope this helps.
As far as how fast you can start, probably depends on your insurance, and if you need to be pre-authorized for tx. It took me apx.4 weeks to get ok'd by my insurance co. to tx. At first they denied me because I am a geno 3 with low viral load. My Dr. really went to bat for me, and finally got approval.
Go to your Dr. armed with info. It's so important to be on weight based Riba. I was and am, but was not und until week 12, and so am considered a slow responder, and am currently on week 37 of 48. I was bummed when I had to extend because I was looking forward to 24 weeks, but it is what it is, and thankfully there are so many great people on here that gave me info and encouragement to continue!
I hope you have a smooth ride and clear early. Keep us posted on how you are doing!
Blessings
Go to your Dr. armed with info. It's so important to be on weight based Riba. I was and am, but was not und until week 12, and so am considered a slow responder, and am currently on week 37 of 48. I was bummed when I had to extend because I was looking forward to 24 weeks, but it is what it is, and thankfully there are so many great people on here that gave me info and encouragement to continue!
I hope you have a smooth ride and clear early. Keep us posted on how you are doing!
Blessings
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