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My 12 week Blood Tests are in (Real Time PCR)
Hi everyone. I called the lab this morning and the Realtime PCR came in but they wouldnt give me the numbers and my Hep C Dr is closed. So I went to my family Dr and he got a copy of the Blood Results for me. When I started Tx my real time PCR was 519,000 and the other # was 5.72. But todays results were Real time PCR was 289 and the other number was 2.46. This was not a 2 log drop but I am at least responding. What do you all think. Is this semi good news or not. Do you think I should continue tx and maybe do some procrit for my hemoglobin and red blood count and low plateletts? or other medication?
Easywriter
Easywriter
great news on the demise of your HCV strain!
funny how just a few yrs ago, having detectable at 12 wks was no big deal as long as we had the two log drop or better. Now, they are not so sure and tend to think of us as slow responders(quite a few docs do) and might consider going longer. The Drusano model suggests 36 wks past the first negative, and others encourage even longer. Hopefully you and the bean will be negative at wk 16 and can use that as your marker for decission.
funny how just a few yrs ago, having detectable at 12 wks was no big deal as long as we had the two log drop or better. Now, they are not so sure and tend to think of us as slow responders(quite a few docs do) and might consider going longer. The Drusano model suggests 36 wks past the first negative, and others encourage even longer. Hopefully you and the bean will be negative at wk 16 and can use that as your marker for decission.
In case you missed it, scroll up a couple of posts and check out Goofy's link to the Cleaveland Clinc re: low platelet count. The article seems to suggest low platelet counts are not always dangerous, manageable, which is also something picked up from my tx doctors. Hopefully there's some relevancy to your situation, and something you could share with your current doctors, or possibly future doctors.
-- Jim
-- Jim
Thanks for the link. It was very informative and provided information I wasn't aware of. Mike
Yep - 3 log drop
519,000 x .01 = 5190 (that's a 2 log drop)
519,000 x .001 = 519 (that's a 3 log drop)
So your 289 is great, but I can't remember - is this the 4 week or 12 week PCR? If it is 12 week, we are in the same boat; responsers for sure, but still detectable at 12. We definitely need to continue, and do see if you can get another PCR soon - say at 16 weeks. I did, and am waiting those results now.
goof - interesting article on platelets. thanks
friole
519,000 x .01 = 5190 (that's a 2 log drop)
519,000 x .001 = 519 (that's a 3 log drop)
So your 289 is great, but I can't remember - is this the 4 week or 12 week PCR? If it is 12 week, we are in the same boat; responsers for sure, but still detectable at 12. We definitely need to continue, and do see if you can get another PCR soon - say at 16 weeks. I did, and am waiting those results now.
goof - interesting article on platelets. thanks
friole
Easy - I remembered this <a href="http://www.clevelandclinicmeded.com/ccjm/april04/george.htm">link from the Cleveland Med Center</a> this afternoon. Worth reading - among other things is this quote covering the use of ibuprofren:
In all thrombocytopenic <small>[low platelet]</small> patients, it is important to avoid aspirin and other medicines, <b>such as the nonselective nonsteroidal anti-inflammatory drugs</b>, that can impair platelet function.
In all thrombocytopenic <small>[low platelet]</small> patients, it is important to avoid aspirin and other medicines, <b>such as the nonselective nonsteroidal anti-inflammatory drugs</b>, that can impair platelet function.
And to add to Jim's good info - I've never done this for a Doc appt. - but it can be pretty effective if you're up for it. Show up first thing in the morning with a hot box of starbucks coffee, and 8 empty cups. Say what you will about starbucks, NO ONE refuses that coffee on principle. And no one will chase you out - trust me. Hand over the coffee, introduce yourself, and ask the nurses how to get a word to Dr X.
And if you're really game - see AZgirl's post about rolling on the floor clutching her liver while screaming the pain - the pain!
And if you're really game - see AZgirl's post about rolling on the floor clutching her liver while screaming the pain - the pain!
And then - just when I thought my guys were as laid back as could be about the ANC, I got a call last night from the Doc about my low ANC (420 on thurs). He ends by saying, "You really don't want to mess around with this Goofy, you can get a really nasty infection."
I think he's OK with me troughing down there - as long as I'm not injecting peg at the bottom of the trough. Nurse is on Vaca and the doc isn't as close in the loop on the day-to-day week-to-week.
I think he's OK with me troughing down there - as long as I'm not injecting peg at the bottom of the trough. Nurse is on Vaca and the doc isn't as close in the loop on the day-to-day week-to-week.
Thanks to all of you I am much more relieved. Thanks to all of you for responding. I live in Dayton, Ohio and as I mentioned earlier I would love a referral to a true Hep C Dr. or Treatment Center. Either in Dayton, Indianapolis, Columbus, or Cincinnati. I am covered by CIGNA.
This is from my Dr.s website at www.digestivecare.net Perhaps he is not a specialist in Hep C.
Dr. Wilson completed his undergraduate training at Virginia Polytechnic Institute and received his M.D. from Hahnemann University in 1979. He completed his internship and residency in Internal Medicine at Rhode Island Hospital, Brown University and then served as a general internist in the U.S. Air Force at Wright-Patterson Medical Center. He returned to Hahnemann where he completed his fellowship in Gastroenterology. He has been Chairman of the Department of Medicine at Miami Valley Hospital and is an Associate Clinical Professor of Medicine at Wright State University School of Medicine. Dr. Wilson is a Fellow of the American College of Physicians. He is married and has three children.
Is a gastroentolgist the same has a hepatologist?
Thanks again. Easywriter
This is from my Dr.s website at www.digestivecare.net Perhaps he is not a specialist in Hep C.
Dr. Wilson completed his undergraduate training at Virginia Polytechnic Institute and received his M.D. from Hahnemann University in 1979. He completed his internship and residency in Internal Medicine at Rhode Island Hospital, Brown University and then served as a general internist in the U.S. Air Force at Wright-Patterson Medical Center. He returned to Hahnemann where he completed his fellowship in Gastroenterology. He has been Chairman of the Department of Medicine at Miami Valley Hospital and is an Associate Clinical Professor of Medicine at Wright State University School of Medicine. Dr. Wilson is a Fellow of the American College of Physicians. He is married and has three children.
Is a gastroentolgist the same has a hepatologist?
Thanks again. Easywriter
Not to alarm you, but I read recently that Air Force Gastros tend to specialize in piles, polyps and anal fizzures. It comes from treating so many flight pilots with too many hours on sticky vinyl seats :)
Actually a hepatologist is a Gastro with a special interest in the liver. Since Hep C is what most often goes wrong with the liver these days, they tend to deal mostly with that.
Actually a hepatologist is a Gastro with a special interest in the liver. Since Hep C is what most often goes wrong with the liver these days, they tend to deal mostly with that.
One more note - I can't help with a Dr lead, but hopefully someone will. Maybe you could send a compelling email conveying your sense of urgency, your success so far, and your commitment to beating this thing? I get the impression most docs at these places rely heavily on email - so it's unlikely your plea would vaporize as it might if sent to a smaller office.
Again - good luck!
Again - good luck!
If no one comes up with a name, try the clinical trials web site: http://www.clinicaltrial.gov/
Go to "focused search" and plug in "hepatitis c" under disease and "Ohio" or a more specific locale under "location".
What you'll come up with are all the trials going on in your state. If you browse through them you'll probably see a pattern that some major hospital or university is involved in many of them.
Contact that hospital or university and find out who "Mr. or Ms Hep C" is. It would be the hepatology dept, or liver center or something like that. Then, as Goofy suggest, you have to get a little agressive and convey to them the urgency of your situation otherwise you can wait months for an appoitment. The treatment nurse is usually more available than the doctor so you cold start there, or email can work remarkably well. Often you can find their emails at the end of their studies or papers if you "google" their name, or sometimes it's listed in the hospital directory.
Good luck.
-- Jim
Go to "focused search" and plug in "hepatitis c" under disease and "Ohio" or a more specific locale under "location".
What you'll come up with are all the trials going on in your state. If you browse through them you'll probably see a pattern that some major hospital or university is involved in many of them.
Contact that hospital or university and find out who "Mr. or Ms Hep C" is. It would be the hepatology dept, or liver center or something like that. Then, as Goofy suggest, you have to get a little agressive and convey to them the urgency of your situation otherwise you can wait months for an appoitment. The treatment nurse is usually more available than the doctor so you cold start there, or email can work remarkably well. Often you can find their emails at the end of their studies or papers if you "google" their name, or sometimes it's listed in the hospital directory.
Good luck.
-- Jim
Goof said: "My center, for example, takes the attitude of, "Low platelets? Well, we better take care of that. We may need to add a med, reduce a med, but we'll do what we need." They've seen it all before."
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Good point. Some places are just a lot more relaxed and a lot more agressive/passive regarding treatment depending on the issue.
When my ANC dropped to 420, they didn't blink. When I pressed them if they had Neupogen around should I need it quickly, the NP said, "we got lots around because we rarely use it. I wouldn't be concerned until it hits 200-300". I suppose other med teams might have reduced my meds at that point. Your platelet issue needs to be addressed by a doctor, but there's a good chance another doctor will not share your current's concerns regarding stopping.
-- Jim
----------------
Good point. Some places are just a lot more relaxed and a lot more agressive/passive regarding treatment depending on the issue.
When my ANC dropped to 420, they didn't blink. When I pressed them if they had Neupogen around should I need it quickly, the NP said, "we got lots around because we rarely use it. I wouldn't be concerned until it hits 200-300". I suppose other med teams might have reduced my meds at that point. Your platelet issue needs to be addressed by a doctor, but there's a good chance another doctor will not share your current's concerns regarding stopping.
-- Jim
You mentioned that at your center they can deal with low platelets. I don't know of anything that will increase platelet count aside from lowering or discontinuing the interferon. If you know of a drug I'd be very interested in learning about it. I did a lot of TX with platelets in the 25,000 range and my center had nothing that would help. Thankfully they didn't seem too concerned but most doctors do get very concerned. Mine was a tranpslant center and maybe that's why they didn't react. Mike
Mine is a TP center too, though I'm banking on not needing their core services :)
They mentioned it to me, pretty much as the quote I put earlier, if not verbatim. I've read about the med, it has a name similar to Neupogen, but obviously that's not it. It may be fairly new. Let's see if anyone here chimes in, if not I'll try to find it for you.
They mentioned it to me, pretty much as the quote I put earlier, if not verbatim. I've read about the med, it has a name similar to Neupogen, but obviously that's not it. It may be fairly new. Let's see if anyone here chimes in, if not I'll try to find it for you.
Try the University of Cincinnati. They have a wonderful team there that you will love,even though it is 50 miles or so, you can't beat them!
I forgot about Neumega but that's probably the drug. It was available when I treated and I don't know why it wasn't mentioned now that I think about it. I looked it up just now and I see that arrhythmia is aside effect and I had a bout of arrhythmia once during TX. That may be the reason it wasn't mentioned but my surgeon never seemd concerned about my platelet count and it was pretty low. Thanks Goofy. Mike
Yup. Neumega it is. I was interested because during the first few weeks all my everything was nose diving. Platelets leveled at about 70 - hgb at 10.5 - and WBCs might be negative were it not for Neupogen. They're supporting hgb with procrit (about 12 now), but I think it had leveled on its own.
That's really good news!
Still, your platelettes are low - and I think you said you were having outward symptoms of clotting issues. Your hemeglobin and abs. neutros look like they may head into the low zone too.
Seems to me you want to get to a doctor who is comfortable dealing with these issues. Usually, larger treatment centers like teaching hospitals are more familiar with managing some of these issues. My center, for example, takes the attitude of, "Low platelets? Well, we better take care of that. We may need to add a med, reduce a med, but we'll do what we need." They've seen it all before.
Problem is, it can be difficult to get into one of these places quickly. If you're interested and you post your city, maybe someone can give you a lead.
Also, I don't follow stopping the riba. As I understand it, interferon has a greater play in the reduction of platelets than does ribavirin. Maybe I'm wrong.
Good luck to you - things are definitely looking up. You're definitely grabbing this bull by the bull-dinkie!
Still, your platelettes are low - and I think you said you were having outward symptoms of clotting issues. Your hemeglobin and abs. neutros look like they may head into the low zone too.
Seems to me you want to get to a doctor who is comfortable dealing with these issues. Usually, larger treatment centers like teaching hospitals are more familiar with managing some of these issues. My center, for example, takes the attitude of, "Low platelets? Well, we better take care of that. We may need to add a med, reduce a med, but we'll do what we need." They've seen it all before.
Problem is, it can be difficult to get into one of these places quickly. If you're interested and you post your city, maybe someone can give you a lead.
Also, I don't follow stopping the riba. As I understand it, interferon has a greater play in the reduction of platelets than does ribavirin. Maybe I'm wrong.
Good luck to you - things are definitely looking up. You're definitely grabbing this bull by the bull-dinkie!
A two-log drop at week 12 means you're responding the drugs very well. In your case, you did better than a three-log drop, which is even better. In fact, many tests only go down to 600, IU/ml. By those test standards you would be considered "non-detectible". My guess would be that you will be truly non-detectible very soon and well before week 24. Hope this makes your weekend and try working on your doctor or finding another one that will treat you.
-- Jim
-- Jim
Looks like better than a 2 log drop unless I am missing something and that's always possible. CONGRATULATIONS EASY _ Good Luck. Mike
I dont understand. But I am elated if I got a 3 log drop. I am still confused as to what that means. I may not be clear but I at least am responding right. (Smile) Easy
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