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233616 tn?1312790796

help-being cut off of treatment

starting with a 1.4 mil VL

at 4 wks down to 300,000

at 6 wk back up to 700,000

just got the call.

thinking of continuing tx until I can get in to see Benner in Jan.
but med will run out late Dec.

suggestions for this and/or things to ask for.

please help anyone.
Mary B
54 Responses
Avatar universal
Mary,

Very sorry about the news.

I confess to not remembering any of your stats, or even if this is your first time treating, so I will limit my comments in a very general sense.

Both your week 4 and week 7 response are less than one log, which basically is no response at all, given the variances of these tests. Therefore it's uderstandable -- again depending on individual stats -- that a doctor might pull a patient off treatment to spare a non-responder the treatment drugs.

Curious if they took any action at week 4? With less than a one-log response at week 4, I would think that something would have been changed in your treatment to accelerate the viral drop. For example, if you weren't too anemic, then more ribavirn might be added, and I'm assuming you're on weight-based riba already. Or maybe even the peg dose might be increased, possibly even the type of peg changed. Bottom line is that some thinking should have gone into why is Mary not responding as fast as we like, and what can we do to make her respond faster. Did you have such conversations with your doctor? Is your doctor a liver specialist (hepatologist) or a GI?

Now your're probably around week 10 or so, and not sure if a change will be in time -- unless of course you have significant liver damage, are willing to treat 72 weeks, etc, with a diminished chance of SVR.  In that case, maybe it might be worth changing something to get you UND (or as near to UND as possible) by week 12.

Again,hard to know what to advise based on not knowing the stats -- but if it were me, I'd want more info than "the call". I'd want to speak to my doctor and go over my options and I would not want to wait until January.

Again, sorry about the news.

-- Jim
233616 tn?1312790796
thanks for the quick response JIm, ,,,,,,,thank you, and yes, yours was the one "club" on here I was hoping not to join. I've been bedridden most of the last 4 years (partly from the brain/pituitary stuff)
and with swollen liver/spleen the whole last 12 months...and yet they still said today, you aren't sick enough to get on a transplant list.

,,,,,,.>>>>>>>>>>>Curious if they took any action at week 4? With less than a one-log response at week 4,

I wonderered myself why they didn't up the riba, but they had said you are doing fine,
but I didn't pursue it, figuring the guys an expert....and figuring what I learned in here was true, not being a quick responder didn't mean if I droped 1 log in 4 wk, I couldn't drop another logat least in 8 more weeks.

I am at the 9th shot now. only one day past 8 wk. treating.

my VL was a log drop, Doctor Benner is supposedly one of the best here abouts, but he's very business like, in and out of every visit in 10 minutes.

Yes, "to the if it were me" I already asked to stay on tx until I got seen or have doses uped meanwhile. the nurse practioner kinda nixed those, saying they see no improvement with Interfergen
except for worse sides, no clearing. Same with Riba, although I doubt this, after reading in here.

I'M NOT YELLING HERE, JUST WANTING EXTRA ATTENTION TO THIS NEXT DETAIL:

my one concern is, could the Human Growth Hormone I'm taking for my pituitary dysfunction also be growing the virus??????

HR HR HR HR HRRRR    if you see this, I've already asked all 4 of my docs and no one can give me an answer as to whether something that helps healthy calls to repair and reproduce could also help a human virus to grow stronger as well.

talk about a dilemna.  I will post my stats on my profile soon so you can see them.

thanks again.
Avatar universal
MB: ut they had said you are doing fine,
but I didn't pursue it, figuring the guys an expert.
--------------------------------------------------
Look, I'm no doctor, but something is wrong if a doctor tells you things are "fine" with less than a one-log drop at week 4. Things were not fine, and either your medical team was too busy to notice, or you maybe have the wrong team. Again, less than a one-log drop at this point means you are not responding.

MB: yours was the one "club" on here I was hoping not to join.
------------
Not sure the meaning. I treated 54 weeks, was RVR, and am SVR for over a year now.
144210 tn?1273092382
Sorry for the news, that just sucks. God Bless.
233616 tn?1312790796
OH OK, sorry, for some reason, with all the reading, and remembering your "afterwards" side effects etc. etc. somehow
I thought you were a non-responder, never saw your original stats either........well glad to hear otherwise for you!!!!

and kudos for staying in here and helping folks.!!!!!!!!!!.
86075 tn?1238118691
just soooo sorry to hear of this...youre one of the most informed too...course, sound like a broken record but it is true, these new cocktails are on the horizon, which will give you a much better chance, all the best to you, youre a strong one, I can tell...you'll get past this...
Avatar universal
I agree with Jim completely on this. You should have had a much steeper viral decline by this point and the fact that you haven't doesn't bode well for you in the context of SOC. When I treated I didn't see VL before 10 weeks and at that point I still had a few hundred IU/ml - down from a starting VL of 2.5 or 3.5 million IU/ml. I was undetectable by week 12 and I did extend treatment for 73 weeks because it was my third try. I guess it's conceivable that you could get undetectable by week 12 but I would think that something would have to be changed right away for you to have a better response.
I hate to criticize anyone's doctor but when you said:
"my VL was a log drop, Doctor Benner is supposedly one of the best here abouts, but he's very business like, in and out of every visit in 10 minutes."
I have to wonder what mathematical model he is using because a 1 log drop from a starting VL of 1.4 million IU/ml would be 140,000 IU/ml according to everything I have ever read about log values and HCV VL. If he said that to you it would not inspire confidence in me. I am not saying I would drop the guy but I would press him very hard about my treatment and any possible modifications that might result in improved efficacy.
I wish you good luck and good luck soon.
Mike
Avatar universal
I'm no doctor, but I've gone a couple of rounds with this medicine, I would not keep going if you can get your doctor to regroup, wait a month and hit it hard for 4 to 8 weeks, like double up 360 a week, 1200/1400/1600 and test at 2/4/6/8 with heptimax, just a different approach instead of going out 72 weeks with low response and relapsing, and I know for sure how bad that feels! You should know by 6/8 weeks! Just my thoughts about another angle! Good Luck! Here's an example of what you need!
http://www.natap.org/2007/EASL/EASL_37.htm
360 is hard, but not that hard!
233616 tn?1312790796
Jim---they do not even do weight based at this clinic except on the INF...I'm at 180....everyone starts at 1200 Riba

foreseegood, thanks for your remarks, they are always jewel tones and fresh air.

mikesimon- thank you very much, for the advice and the getting on and over. You know, it's funny but the last two weeks I really started feeling swollen and buzzy like hornet stings again...so the news was not a complete surprise, what had felt like a settling down had escalated again...funny how our bodies can tell us volumes.

spcecst2  thanks for the link, I'm not going to just give up, I'll press in or get a new doc, although new docs take months to get in to see around here. I actually did a lot of trial re-ups the last few months----(until my head began to spin Linda Blair/exorcist style) just "in case" I might need to avail myself of them.







Avatar universal
happens that I too am not a doctor.  : )

Mary, I'm very sorry to hear about this.  I know you'd like to make a few rapid changes and keep going but once you rebound I think the odds do not look very good for continuing TX.  That may sound bleak but I can think of something worse........ and that might be continuing for another 24 weeks or so and still make no headway.

I feel that never the less you are asking in effect if someone has other ideas in which you could somehow continue your treatment.  I don't know your particulars but if you have been bed ridden you may have some health issues which have prevented the doctor for really hitting you hard with a full or stronger dose.  IF he has been doing reduced dosage I think that you can see that underdosing is decidedly not working.  Now that you have rebounded you are going to have to counter with something even stronger (or at the very least something different), or so it would seem to me.

Things you could possibly do; (not knowing your particulars)
1) switch types of interferon
2)  increase the dosage from whatever you were doing
3)  If you were not using rescue drugs but had your dosage reduced due to low RBC/WBC perhaps this time use em in conjunction with higher dosing of the TX.
4)  Might your doc agree to put you on Alinia?  (print out a few threads and presentation from the AASLD)
5)  IF you are going to continue with TX you might also have to up the ribiviren?  Might it help with the so called interferon resistant virii?  (you notice that this is a question, not presented as fact)
6)  Since you have officially rebounded you also really need to understand; are your odds better in continuing or waiting...resting....and trying again later after a rest?  
7)  You might also check out      http://www.hepatitisdoctor.com/
Dr Cecil strives to keep dosing high and has several change ups in treatments depending on how his patients respond.
-------------------------------------------------
New and better treatments are coming.
You may experience some improvement since you liver may have regenerated a bit even in this short time.
IF you can clear this virus successfully in several years you won't need and don't want a TP unless you absolutely need it.
You may become eligible for a trial after some time goes by.  You may not have to wait 2-3 years.

If you must stop treating accept it; it may be a good thing.  Only time will tell.

We all feel very badly for you but keep asking questions, don't give up and keep a positive attitude.

best,
Willy


315996 tn?1429057829

Friend of a friend got treated at OSHU. You might want to poke around there for a second opinion or more inexpensive treatment. Also, someone posted on here that Emmanual had some experts.

I got into the Oregon Clinic pretty quick. My GP had me put on the cancellation list. I am really following your situation really close because I have the same doctor.

Avatar universal
dang dang dang. i am sorry to hear your news.

i think you've got good advice above. it is a tough choice here to make and if it were me i would be at docs office pronto ringing bells for changes before that 12 week pcr comes up.
another consideration is to have a repeat pcr before next dose to confirm the trend in the last results, remembering labs do give out errors sometimes.
but then i re read the posts and is it true your doc wants to stop tx now?
if true i would consider this carefully. with the response you have shown if something doesn't change in regards to your tx; it is unlikely your response will change to benefit you at week 12 for the minimum needed 2 log drop. as the doc has already been cruising with your response and from the sound of it he might not be willing to suppport individualized tx options to change this present tx around (if possible).  if so then perhaps resting now to regroup/re-eval and consult another doc is in your best interest.
about the HGH. hmmm will try to find studies. i hope Hr can enlighten. another option would be to call the pharm company that manufactures the product you are taking and directly ask them if this product has any effect on hcv, IFN or riba. make sure you get the name of the company rep you talk to and keep a record of their advise. the best would be a written reply. another option would be to consult asap with the IFN nurse regarding HGH with their product. i am unsure if you are on pegassy or pegintron? but each have a nurse available and i would resource them.

ohh merry your in my prayers! stay positive. sometimes battles don't always turn out the way we need them to..sigh.. but it does not mean you've lost the war...no way, no how!
hugs
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