Ok gang I am walking on air right now and if there is anyone out there who can put my feet back on the ground...please DON'T!!!! :) :) (and forgive me if I should be on the other forum, but this has something to do with Support and the medical aspects of the virus) so I tossed a coin! ;) Well after only 5 shots/weeks on Tx, today I got my first V.L numbers and to my astonishment and the astonishment of my doctor, who called, and said "are you sitting down?" "yes" I said holding my breath........ "drumroll please" she giggled....... Your V.L went from
3 million 700,000 in 5 weeks to........ 5 !!!!!!! You saw it right 5 just good ol' 5! Barely there! She said in all her years she has never seen a VL come down so soon, so fast that much! That of course doesn't mean it has not and cannot happen....it shows it can happen and we should all take great hope in this!!
Has anyone out there had this same amazing experience? For those of you who don't know I am Geno type 2b...but she said that was still quite quick even for a 2ber. I think she was more excited than I was!!! Naaaa I don't think so!! :)
I know I still have 19 long weeks to go to get to that Ultimate 0. And a lot can happen with Sx...so far they have been minimal...but I am taking my 5 and clinging on to it for dear life right now, and not thinking beyond that!!!
Are there many out there that have had such a quick response to Tx? My Doc made it seemed so unusual...I wanted to get back to the source YOU and find out if this is fairly common so soon, and she was just trying to make me feel at ease.
Dragon Tamer.... on cloud nine!! No Cloud 5 !!!! :)
Well, first congratulations! You appear to have what is termed RVR (rapid viral response) although technically RVR means you are undetectible at week 4, when you apparently weren't tested. I'm also assuming that the sensitivity of your test was 5 IU/ml and not your viral load, but do check because only one test I['m aware of goes below 5.
In any event, assuming you're RVR, I believe at least 50% of all genotype 2's are also RVRs, but maybe someone has the exact figure. So, that leads me to believe that your doctor is either not very experienced or would not have made that statement.
Bottom line though is that you appear on your way to SVR (cure) but just clarify what that "5" actually means although I'm guessing it means undetectible and not that your viral load is 5.
It's Awesome Awesome Sweet news, I'm sure ! I'll be reading before I go to work so hat's off to ya.It sounds amazing.I mean with such a rapid response and all.Wow! Hope you can sleep.I have to. Goodnight and Angels on your pillow up there on cloud nine.
Tammy- Had to post in case everyone is sleeping.
The only way I can think of that you could get a viral load of "5" is if you ran the quantitative LabCorp test that goes down 2 IU/ml, but even in that case anything between 2 and the lower limit of the quant portion would only be an estimate and so explained on the lab report. I'm therefore guessing that she is UND per the limit of the test, but always best to get a hard copy of test in hand and double-check everything yourself.
Ala, btw in that other thread don't think anyone was referring to you by a long shot. It's like you said.
As a 2b, you have a 80%+ chance of clearing this nasty dragon from your system! At 4 weeks (5 in your case) if a person is undetectable, their clearance rate gets even better...I was undetectable at the 4 week mark (I'm a 3a) and have remained the same since...so far...I'm suspecting your #s are saying undetectable, or nearly so...I do hope so...Congratulations...By the way, is the Dr you're seeing a hepatologist? I'm glad they are happy for you, but quite a few geno 2&3's rvr...It seems they are inexperienced with this...But good support! Again, congrats...(By the way, I just finished my 24 weeks! Wha hoo!) ~Melinda
I'm a 2b also. My vl went from 45 Mil. to und in 4 weeks. That was good news and yours is too, but now I've switched gears and am so afraid of relapsing. My last shot will be this Friday...Good Lord, I didn't realize that! I am afraid of getting off of tx to tell you the truth...
Good Luck to Both of us.
Did you tx longer this time? I'm a 3a also, and part of me wants to plug my ears to your relapsing history and go "la la la la" in a corner! I just finished my tx, and relapsing is unacceptable! ...By the way, kudos to doing this again...I know I sure wouldn't want to...
Good luck! may you be UND! ~Melinda
I am (hoping was) a G2 as well. I too was UND by 4 weeks. My ALT/AST went down to normal (after being in the low hundreds) within 2 weeks and the doc thinks I may have been clear even earlier. I felt totally elated when I heard the news!
The others are right though. My doc expected me to be clear by 4 weeks because he said over 60% of G2 & 3 are clear by then. You want that to be the case.
It is good news....that means you are responding very well and your chance of clearing is very good.
Keep us posted on upcoming tests, stay with the program and time will go fast.
By the way, taming not good enough.....KILL that dragon!
Good news and consistant with G2B. I started with VL about 3 mil took 1st PCR at day 10 - was down to 203. Alt was down to 37 from 124.
Took second PCR at week 3.5 was UND. Stopped tx at wk 12 - still very disabled and working through major sides but was still UND at wk 12 and am waiting on results of my 4 wk post pcr - am on pins and needles. (My journal on my profile has all the details)
Here's a recent 12 week article and an older one on 16 wks vs 24.
12 Weeks of Treatment in Genotype 2/3 HCV Patients With RVR
Peter Ferenci, MD:
In a study by Mangia and colleagues, 718 genotype 2/3–infected patients received peginterferon alfa-2b plus weight-based ribavirin for variable durations, determined by on-treatment virologic response (Capsule Summary). Specifically, patients who achieved an RVR continued treatment for only 12 weeks total, whereas patients who did not achieve this milestone continued through the standard 24 weeks of treatment.
The researchers found similar SVR rates in the 2 groups of patients—82% in those with RVR and shortened therapy vs 86% for patients who did not achieve RVR and received 24 total weeks of therapy. Despite this, the researchers recommended against shortened treatment duration for patients with low baseline platelet count or high BMI as both of these factors were associated with relapse in this study.
Alfredo Alberti, MD:
Once again it is important to consider the potential differences between how genotype 2 and genotype 3 patients may respond to this shortened duration. It is not clear from the presentation what proportion of patients were infected with genotype 2 vs genotype 3 HCV.
Michael P. Manns, MD:
There is an ongoing debate over the feasibility of shortened treatment, based on the results of the ACCELERATE trial. In that trial, patients infected with genotype 2/3 HCV were randomly assigned to receive either 16 or 24 weeks of therapy with peginterferon alfa-2a 180 µg/week plus ribavirin 800 mg/day. The researchers found that SVR rates were lower with 16 weeks of treatment vs 24 weeks (62% vs 70%, respectively; P < .001), and relapse rates were higher in the 16-week group. Even among patients with RVR, SVR rates were 79% with 16-week therapy vs 85% with 24-week therapy (P = .02).
Peter Ferenci, MD:
It will be important to identify the characteristics of patients who would benefit from a short course of treatment, and the optimal dosing schedule needs to be specified. These findings represent merely guidance for treatment. Clinicians will need to use their own judgment in collaboration with each patient.
Hope this helps - Mikmoe
PS - Hi everyone - hope to drop in more often..when hands are working better
Thanks for the info and encouragemnet!' I have been a way a few days so took a while to get back here. I came back to the official letter from the doc which read " GOOD NEWS! The Hep C Virus rest showed that your serum viral levels were "undetectable." Although this suggests you are more likely to have a sustained viral respsponse after 6 months of therapy,it does not guarantee that outcome.
Your other blood tests show that your white blood count and platelet count are decreasing from the medications. If they continue to decrease you will need an adjustment in your medications dosage."
I am still feeling fine (but tired) and getting out in the fresh air of Northern New England was better than any meds for me! Felt great!
What I am wondering is does anyone have any (natural/food) ideas to get those white counts and platelets up. so I don't have to readjust my meds. I am just afraid by readjusting (lowing) my meds ...my levels could go back up???? Any ideas on this?? I had to stop my Japapenes mushrooms because they thought they made my liver enzymes go up some. :(
I was sure they would help, with my white count. (and a component of them did go up but not the whole count) I don't eat red meat, but if I am becoming anemic from the meds I would rather eat meat than take procrit! And what about food that boosts the immune system I only eat organic, lots of good protein...I don't know what else to eat to stregnthen my immune sytem without herbs or supplememts which throw off my liver levels????
Any and all ideas welcome!
Thanks for being here you are all my rock!
As Texas suggests, I'd immediatly ask for a copy of your most recent labs and check values for : (1) hemoglobin; (2) Absolute Neutrophils (ANC); and (3) platelets.
Not saying this will be the case, but some doctors -- epecially those with less experience as may be with your team -- tend to pull the plug too early and reduce doses when a more experienced team (at the same blood values) will either keep the full dose and/or use a helper drug like Procrit (epo) or Neupogen.
Once you get hold of your blood tests, you would then want to discuss with your medical team at what point they would reduce your medications and/or use the helper drugs mentioned. If the answers aren't satisfactory, this would give you time to either negotiate with your medical team and/or look for a new medical team.
In general, dose reduction is to be avoided (reduces chance of SVR) unless medically necessary. The "medical necessary" part is tricky and somewhat subjective -- therefore best have the most experienced medical team determine the necessity.
In general, dose reduction is to be avoided (reduces chance of SVR) unless medically necessary.
It sounds like you do already know this advice but I would take the time to ask my doc why he isn't so intersted in procrit and neupogen before doing something that might hurt my chances.
I took procrit for 69 weeks of my treatment. I didn't really suffer any sides from it and it enabled me to stay on full dose non-reducing the entire time. Sometimes we had to adjust the amount of the procrit however...beating this disaese was worth it.
I wouldn't change your diet and start eating red meat if you don't eat it now. As a carnivore I can tell you I do know it's not so good for you but I'm thinking...it might really mess up your digestive tract because you aren't used to it - and you don't need any compounding problems (and also you really don't want to boost your iron intake unless absolutely necessary as it does assist with viral replication).
Start with getting your labs and asking your doc about the meds. It just might be that your levels haven't dropped that significantly yet and that is the only reason he hasn't started you on the rescue drugs.
I don't eat red meat, but if I am becoming anemic from the meds I would rather eat meat than take procrit!
Procrit is to raise hemoglobin, not WBC, ANC or platelets. Neupogen is the helper drug used to raise ANC.
Eating more red meat (or adding iron to your diet) will not help riba-induced (Hemolytic ) anemia. Procrit works via a different mechanism. Your medical team should know the difference between the two types of anemia and explain it to you.
As mentioned, what you really should do now is request a copy of the latest labs and ask your medical team directly what their plan is in terms of blood values and reducing meds and/or using helper drugs.
Thanks for the valuable advice... I will do my labs again next Friday and see the doc the week after... I will get all the details then and a hard copy of the numbers. I was just told my lab work was fine...iron, liver enzymes, Alt, etc all good.... but the White count and platelets down. No actual numbers...my NP said nothing too too low to worry about "now"... so next week we shall see.
Will let you know.
I was just hoping someone would come out and tell me to eat more sweet potatoes or something!! :)
I dread the thought of taking Procrit, which is another needle right?? Not to up on what the sides might be... The less %$#% I put into my body the better! I just feel like now that the virus is "undetected" I am pouring this poison into my body for almost nothing.... but I realize the chances of relapse will always hang over my head. :( if I stop prematurly.
Will share the numbers when I get them. Thanks for taking the time to be here you sweet beautiful people!!
Hope you all are doing well, keeping strong and holding on to the light of hope!
That's good news! UND this early into tx is very good! I'm also geno 2 and was UND at week 4 and week 16 Hoping to get my EOT (end of treatment) results back soon. It's been over a month since I finished tx ~ took the test on 7/15. I can't seem to get the doc's office to give me the results. Anyways good luck and best wishes to you for a speedy tx!
Any word yet on your EOT??? I can't believe you have to wait a month for something so important!!! After all is said and done...as I'm sure it will be.... you are a fighter I could tell right from the get go :) what would you say were the most difficult of your side effects through the 24 week tx?
So what is the next step? They keep checking every few months for a year?? I believe that is what my doc said. Did you have to take the procrit or anything for the low WBC and anemia? I will find that out Tuesday, if my counts went down again... I am a bit anxious about having to lower dosage or take Procrit. I felt great last week.... this week I seem to be getting headaches, which I NEVER got before Tx or after the first 6 shots...I hope they are temporary.
Did you find the sides got worse the longer you were on tx?
I am keeping everything crossed for you sweetie!!!!
Let me know.... let us all know I'm sure everyone is anxious to hear the good news!
I have not been able to keep up on things on line as much, the past couple weeks...so I do miss things and try to catch up when I can...
So hello to all and hope everyone is enjoying this beautiful, almost full August moon, where ever you are!!!!
I haven't gotten my EOT results yet. The nurse tells me I don't have a right to my medical results, so I did some research and found out that by law I do have a right to my records. I sent a certified letter to the doc's office yesterday requesting my results. From what I gather they have 15 days to get the requested forms to me, so hopefully I will know something soon.
I think the worse sx, or at least the one on top of my list would be the brain fog followed by the itching, and rash. Tx wasn't too awful for me until I got a sinus infection about halfway into tx. I seemed to go downhill from there. It all seems like a blurr to me now...I remember everyday and everything that went on but it seems like so long ago!
I did have to take neupogen, and towards the end of tx my hgb hit 9.6 and I started procrit. Procrit takes anywhere from 2 to 6 wks to raise your hgb. I didn't like it at all...lots of bone pain for me, but remember everyone is different and some have no sx. I hope you will be one of these people! I didn't have any sx from the neupogen, which works really fast to bring up your ANC/WBC.
Most doc's test at three, six, and 1 year post tx. Hopefully you, me, and everyone else will be rid of this monster for good!
Good luck on tuesday...I hope your labs bounce back up...mine seemed to bounce up and down from week to week. Please let me know how your test turns out. I hope your headache gets better. Remember to get as much rest as you can and drink lots of water.
ok, I'm back. I'm a little anemic again myself these days because I'm having my blood removed via phlebotomy to deal with high iron levels. My iron is very high because my red blood cell count got very low during tx and I had a lot of blood transfusions. That won't happen to you, its a very unusual side effect that I've only ever seen happen to three people on this forum, including myself. But anyway, it made me too tired to finish my answer to you last night.
Usually they will start you on procrit when your blood count goes under 10 and they will caution you not to use the procrit to bring your hemaglobin higher than 12 because they have had problems with patients getting thrombosis if they use it to bring their count higher than 12.
With the wbc, they use neupogen typically, I believe, if your count goes below 2. Most of us here prefer to deal with the absolute neutrophils though rather than the wbc, and we've found that we can let it go pretty low with repercussions. I think Jim's went to .75 before.
When people get infections of various types, sinus, bladder, etc. that generally starts after about six months of tx, as by that time your immune system is kind of eradicated by the interferon (which is the whole point of the interferon, to lower your immune system so the antiviral can kill the virus).
Thanks for the info girls....I certainly can appreciate feeling so low in energy you just don't want to do anything, let alone write so I really thank you for taking the time and hope you will both be feeling better as soon as can be!
Darla I can't believe that nurse told you you don't have a "right"
to your mecical records!!!!!! What planet does she live on!!? That is one of the most important medical rights we have next to Hippa!
Since being involved in all of this, I have come to realize just how inept some of our medical "professionals" are and it is frightening!
The phlebotomist that took my blood last week put one very important order (for my viral load) in the wrong vial, (someone corrected her thankfully) practically collapsed my vein because she had to stick me again foor that and because she forgot to do another order...then when throwing my blood stained bandage away, she missed the bucket and it hit the floor!!! I picked it up myself and threw it away safely! Luckily there were not any children crawling around the floor!!!
I have to say this was the first negative experience I have had, for the most part my docs have been great...but they need to retire this one! She acted like she had more brain fog than me!! LOL
Well I hope this day and condition is gentle on you all and you have the energy and inspiration needed to get out and enjoy some sunshine and vitamin D!
Just remember "Just when the caterpiller thought the world was over, it became a butterfly!!
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