So far, HIV has eluded a cure because it installs its genome into human DNA so insidiously that it's impossible for our immune system to clear it out.
That's excellent news!
Quote:
While current treatments are effective, a lifetime of toxic drugs is required to prevent its recurrence
When I was first Diagnosed HIV+ 20 years ago the prognosis was grim but I took those toxic drugs with all the Sx's because I wanted to live past the upcoming year. Then, with all the research producing better Rx's with less Sx's, I took them because I wanted to live past the upcoming 10 years. Then more advances and I could live a full life as long as I took the toxic Rx's, so I did.
Last week my HIV Dr. took me off my HIV Rx's in order to evacuate my system so I could start a new Rx regimen that will not have negative interactions with Sov/Riba and I felt really great during those days with no nausea etc. But now I'm back taking toxic drugs again because I want to live a full life.
That's really awesome news that we have a 'CURE' for HCV and a cure for HIV is just around the corner.
GOOD NEWS!!! The nurse called a few minutes ago. I was given an Okay for Rx interactions with my new HIV Rx's, so I start Sov/Riba Tx in the morning. I suppose they will use my labs from 5-2-14 for SOT reference. My 1st post-SOT labs will be 8-6-14, then 8-19-14, then follow-up with Dr. 8-26-14.
All sounds good, Mike. Looks like they plan to stay on top of your lab work. That's what we like to see! :)
wmlj1960 said
Jul 22, 2014
mallani wrote:
So, you had a MRI liver on 17th Jan 2014, and a followup on 7th July 2014.
Correct.
I suspect the 'intermediate' lesion in segment 5 should read 'indeterminate'. Classical case of fence-sitting! The 'no definite HCC' is reassuring.
OOPS. I typed that rather than copy/paste. It does read 'indeterminate'. Sorry.
Lets hope I don't fall off of the fence.
I can't view the images as it requires a dedicated bank of monitors, and you need to compare the current images with the old ones. If you want to scan the whole report and post it, I'd be happy to give an opinion. However, all seems good at the moment.
If you say "all seems good" then I'll hold off on posting the report. If the 'final report' of my upcoming MRI on 10-1-14 does not "seem good" then I'll post both reports at that time.
The gynaecomastia is not uncommon in cirrhosis, along with testicular atrophy. Great fun!
Gee, is there an 'opt-out' button I can push for the testicular atrophy part? lol
Best of luck.
Thanks Malcolm!!!
GOOD NEWS!!! The nurse called a few minutes ago. I was given an Okay for Rx interactions with my new HIV Rx's, so I start Sov/Riba Tx in the morning. I suppose they will use my labs from 5-2-14 for SOT reference. My 1st post-SOT labs will be 8-6-14, then 8-19-14, then follow-up with Dr. 8-26-14.
mallani said
Jul 22, 2014
Hi Mike,
So, you had a MRI liver on 17th Jan 2014, and a followup on 7th July 2014.
I suspect the 'intermediate' lesion in segment 5 should read 'indeterminate'. Classical case of fence-sitting! The 'no definite HCC' is reassuring.
I can't view the images as it requires a dedicated bank of monitors, and you need to compare the current images with the old ones. If you want to scan the whole report and post it, I'd be happy to give an opinion. However, all seems good at the moment.
The gynaecomastia is not uncommon in cirrhosis, along with testicular atrophy. Great fun!
Best of luck.
Huey said
Jul 22, 2014
wmlj1960 wrote:
Sure it can, and even in cirrhotics. My hardened (F-4) scar tissue will require more time but that's doable too. Yep, I'm certainly in it with you all!!!
I also read that they have found a way to completely clear all the virons from a cell, HIV Virons that is.
So far, HIV has eluded a cure because it installs its genome into human DNA so insidiously that it's impossible for our immune system to clear it out.
wmlj1960 said
Jul 22, 2014
Here we go mallani:
My previous liver scan was done 1-17-14. The scan I had done since then was for breast tumor screening when Gynecomastia symptoms first became noticeable (lump in breast/soreness). So my liver MRI schedule was actually every six months, and now changed to 3 months. Sorry about my confusion on that.
(1) Cirrhotic liver with intermediate lesion in segment 5, for which close attention on followup is recommended. There is no definite hepatocellular carcinoma.
(2) Minimal periheptic ascites.
I can send you the MRI file if needed? I certainly have no idea what I'm looking at on it.
Thanks again Malcolm for all your help!
wmlj1960 said
Jul 22, 2014
Sure it can, and even in cirrhotics. My hardened (F-4) scar tissue will require more time but that's doable too. Yep, I'm certainly in it with you all!!!
Huey said
Jul 22, 2014
News I read today says that the Sovaldi and Riba I am on has shown it can clear the HCV in co-infected people.
We are all in this together Keep your stick on the Ice. "Red Green Show"
wmlj1960 said
Jul 22, 2014
My Tx nurse was on vacation all last week so she was very busy today and didn't contact me until 4pm. She didn't have much information for me and I understand, and I didn't push for it. I'd rather wait to let her get caught up on everything after vacation in order to lessen the chance for any mistakes / oversights etc. She did tell me that she had received the information from my HIV Dr concerning my new Rx's and my liver Dr will go over that and have an answer for me tomorrow about starting Tx. I'll post that info when I'm made aware of it.
Also, I told her about me having an issue with downloading my lab results from the Hospitals online patient portal. She told me that she, and her other patients, have been having the same problem and gave me the direct # for the supervisor in charge of that system, and she asked me to let her know what the solution turns out to be. So maybe I'll get that issue corrected tomorrow and be able to get my lab results in a timely manner from now on.
Then I think either my liver condition has included portal hypertension to some extent for a few years, or I've been feeling something different.
If a lesion is suspicious for liver cancer, you would be scheduled for a followup after a month or two." "regular imaging is advised for cirrhotics. If your AFP is > 250, you need 3 monthly MRI's or CT's.
I'm scheduled for 3 months. I ask the nurse today about AFP but she didn't have any figures available at that time, but my AFR must be < 250, hence not 3 monthly MRI's. So I'm happy about that!
Thanks for your help Malcolm!
-- Edited by wmlj1960 on Tuesday 22nd of July 2014 06:25:27 AM
mallani said
Jul 21, 2014
Hi Mike,
Your splenomegaly is due to portal hypertension.
There are many benign lesions seen in the liver on MRI. The most common lesion is an haemangioma. If a lesion is suspicious for liver cancer, you would be scheduled for a followup after a month or two.
The AFP is a tumour marker. Although the normal range is <10 ng/ml, it may be elevated in cirrhotics with HCV. The level is usually <250.
Only 50-60% of HCC's secrete AFP, so it is not all that reliable, and that is why regular imaging is advised for cirrhotics. If your AFP is > 250, you need 3 monthly MRI's or CT's.
After successful Rx (SVR), the AFP usually normalises.
Just for interest, mine has never been above 6. It is not a routine LFT, and needs to be requested on a different form, as it is an assay. Cheers.
wmlj1960 said
Jul 21, 2014
Isiscat2011 wrote:
I was reading your comments to Mike about the S/O or S/L tx options and I sure do like the idea of him not having to do Riba too. But he already has the drugs in hand and his doc wants him to get started now. Mike may get lucky and not have many Riba side effects. His hgb was in normal range as I recall and the anemia isn't nearly as bad as it was with the earlier Interferon/PI combos. Mike's insurance notified him that Olysio wasn't approved because it has not been tested on those who are co-infected with HIV and because it isn't FDA approved to use with Sovaldi yet.
The S/L combo has been tested on HIV/HCV coinfected people and it had a 100% SVR rate in 12 weeks in the relatively small clinical trial. The 24 week Sovaldi/Riba had an 82% for 1as which is still pretty good odds.
Mike, your SVR chances really are good. If you and Riba don't get along maybe they can substitute the Ledipasvir for the Riba come October. In the meantime the virus will be taking a beating. The Sovaldi/Ledipasvir works well with HIV drugs. Just a possible Plan B to keep in mind in case you need it. One way or another SVR is a very realistic goal for you.
Thanks for explaining all that for Duane Cat. I type so slow you guys would be waiting a day or 3 for a response lol.
I read one of Malcolm's information post somewhere about the extended tx time needed for advanced cirrhotics being due to the hardened liver scar tissue making it hard for the blood to get to the virus that is within the scarred tissue. So less blood flow = less medicine gaining access to the virus. But it can happen. It just takes more time for the virus to eventually rear it's ugly face out into the accessible blood stream. So I'd better reconsider that unsalted popcorn deal you mentioned the other day because with my F-4 fibrosis, I may be here for a while.
I started my new HIV regimen Prezista/Viread/intelence, Friday and have a few Sx but nothing I can't handle and nothing like some of the old HIV Rx's that I survived through for many years. Surely Riba can't be much worse than that was, but if it's a physically harmful Sx issue in which my Dr chooses to discontinue Riba, maybe it will be after the Oct Ledi release. I like knowing about our plan B.
wmlj1960 said
Jul 21, 2014
Dzdayscomin wrote:
After reading the cats reply it got me wondering if they did an AFP test in June with my 3 month transplant tests, they did, and I don't know why I overlooked it but it was 12.8 which falls right in line with cats statement of improvement after tx.
So I guess I like that because it was as low as it has ever been since I was diagnosed with HCV in 2012.
A little unexpected good news on a Sunday night........Thanks
Yes it is. Congrats!!!
wmlj1960 said
Jul 21, 2014
Dzdayscomin wrote:
I am surprised if you are cirrhotic that they have not tested. However if you are having regular imaging that is a better tool for catching HCC, and active liver inflamation is notrious for presenting a higher AFP result, and that can cause un-needed worry.
what is your MELD score? Platelets low ?Are you on the transplant list? If you have your creatinine, total billrubin and INR you can calculate it yourself...you sound as if you would be a great candidate for the S/O off label tx or the new one coming in Oct. Rather than having to do Riba.
Paracentesis is no fun, but if you have acites to the level you need that done your cirhosiss sounds fairly advanced.
I can only tell you what I have gone thru, and really I found out here i'm not smart enough to give true guidance, but Mallani can give you better medical info in really good detail.
But I'm happy to share the complications I have, and how my doctor is working with me to improve my quality of life.
I'm certain I don't have all my lab results. I haven't been very proactive obtaining a copy each time because I never knew anything about reading the values until now. The Methodist Hospital system where I have most of the labs done has online patient portal service which I thought this information was available at. I tried to download several of my lab results files today but was blocked. I intend to have that issue corrected tomorrow. There are several files on there and it's very possible AFP results will be.
It seems as though my MELD score differs depending on which calculator, but I get 12 on this one.
Platelets = 136 L
Not on a trans list yet that I know of. (Gee, I've got a lot of questions to ask tomorrow).
Paracentesis once in January, twice in Feb due to one failed procedure. So twice so far, i don't remember fluid quantity but I'll try to dig up that info somewhere around here. Abdomen is getting pretty tight lately so I suspect another acites nightmare coming soon.
Yes Mallani is certainly a blessing for us all. It's nice to have access to professional guidance when our regular Dr is busy/unreachable (like mine usually is).
Thank you for sharing your experience with me as we trudge this road to happy destiny together.
Dzdayscomin said
Jul 20, 2014
I am so sorry Mike, I did not read your sig. closer, I did not see the HIV thing, this is why I'm not much for guidance I just don't focus well enough.
Thanks Isiscat for stepping up and giving him the better info, Mike I know zip about co infection so anything I posted may just not apply to you.
I do wish you the very best Mike, and either way beating the HCV should certainly be a good thing for you .
BTW it means Duane's day is coming..... and was in reference to my positive outlook on beating the HCV and overcoming my liver disease.
Duane
Isiscat2011 said
Jul 20, 2014
Dzdayscomin wrote:
After reading the cats reply it got me wondering if they did an AFP test in June with my 3 month transplant tests, they did, and I don't know why I overlooked it but it was 12.8 which falls right in line with cats statement of improvement after tx.
That is good news, Duane. :) I can't wait to see my numbers improve too!
I was reading your comments to Mike about the S/O or S/L tx options and I sure do like the idea of him not having to do Riba too. But he already has the drugs in hand and his doc wants him to get started now. Mike may get lucky and not have many Riba side effects. His hgb was in normal range as I recall and the anemia isn't nearly as bad as it was with the earlier Interferon/PI combos. Mike's insurance notified him that Olysio wasn't approved because it has not been tested on those who are co-infected with HIV and because it isn't FDA approved to use with Sovaldi yet.
The S/L combo has been tested on HIV/HCV coinfected people and it had a 100% SVR rate in 12 weeks in the relatively small clinical trial. The 24 week Sovaldi/Riba had an 82% for 1as which is still pretty good odds.
Mike, your SVR chances really are good. If you and Riba don't get along maybe they can substitute the Ledipasvir for the Riba come October. In the meantime the virus will be taking a beating. The Sovaldi/Ledipasvir works well with HIV drugs. Just a possible Plan B to keep in mind in case you need it. One way or another SVR is a very realistic goal for you.
Dzdayscomin said
Jul 20, 2014
After reading the cats reply it got me wondering if they did an AFP test in June with my 3 month transplant tests, they did, and I don't know why I overlooked it but it was 12.8 which falls right in line with cats statement of improvement after tx.
So I guess I like that because it was as low as it has ever been since I was diagnosed with HCV in 2012.
A little unexpected good news on a Sunday night........Thanks
Isiscat2011 said
Jul 20, 2014
Hey Mike:
AFP tumor markers are just plasma proteins in the blood. A blood test will reveal if you have them and at what level. AFP stands for Alpha-Fetoprotein. It is common for people who have hepc, especially those with cirrhosis, to have elevated AFPs. My AFP levels have been running between 50-100 for years. The AFP usually decreases, and often returns to normal following successful tx.
I have an excellent PCP and he runs an AFP check whenever I have blood-work done which is every 3-6 months. My hepatologist also runs AFP tests with blood work. You may have had an AFP test done but just don't know about it. Ask your doc on Monday.
Dzdayscomin said
Jul 20, 2014
wmlj1960 wrote:
Thanks Dzdc,
It's reassuring to have someones guidance who's case is so similar to mine and 'been there-done that'. I understand more now about the lesions, but I'm still a little hazy on how they arrive at an AFP tumor "score". Is this done after a visual presence of lesions have been confirmed via MRI? And if so how are the test results displayed - eg. in your case '300 nanograms/milliliter? The reason I ask is because I see no test / result resembling AFP on any of my lab results I posted above. I didn't receive any of my MRI results but if no lesions were found via MRI before July 7th, then I suppose a test via AFP tumor marker was not done anyway. I don't know.
I need to ask my Dr about Splenomegaly. After reading some info on it, I have symptoms and have been treated for Pleurisy and bruised rib, which was no lasting help. I've been attributing it to possibly issues resulting from gunshots to my lung diaphragm, liver and spleen back in those glorious drugging years (not), but that hasn't made much since to me because the pain/inflamation gets progressively worse rather than staying constant or getting better.
I was told I likely had Gynecomastia but a breast mamo, CT, Bx was done to be sure it was not a malignant tumor etc. I've always been a slim guy with minimal chest area muscles so the enlargement symptom doesn't bother me much, appearance wise (Yet). Heck, I didn't sign up for this ride in order to get pretty anyway lol. I can easily deal with the soreness to touch so if spiranolactone is best for fluid reduction then I'll likely stick with it for now. and it's much less painfull than that paracentesis needle punching through my abdominal cavity wall!!!
Thanks again Dzdc, (I'm guessing your username means maybe 'Dragon's Day is Coming'?).
Yes on the AFP N/M
I am surprised if you are cirrhotic that they have not tested. However if you are having regular imaging that is a better tool for catching HCC, and active liver inflamation is notrious for presenting a higher AFP result, and that can cause un-needed worry.
what is your MELD score? Platelets low ?Are you on the transplant list? If you have your creatinine, total billrubin and INR you can calculate it yourself...you sound as if you would be a great candidate for the S/O off label tx or the new one coming in Oct. Rather than having to do Riba.
Paracentesis is no fun, but if you have acites to the level you need that done your cirhosiss sounds fairly advanced.
I can only tell you what I have gone thru, and really I found out here i'm not smart enough to give true guidance, but Mallani can give you better medical info in really good detail.
But I'm happy to share the complications I have, and how my doctor is working with me to improve my quality of life.
wmlj1960 said
Jul 20, 2014
Isiscat2011 wrote:
Good luck with your doctor's appointment on Monday :)
Thanks Cat, It will go just fine I'm sure. I was searching around for info and came across a thread where you posted to another member: "I view you as a 'warrior' rather than a 'worrier' ".
Well, I've been doing more than my share of worrying lately, but I'm starting to feel more like a warrior in this battle, now that I know I have support.
I attended AA meetings in Jackson MS in the 1990's at an AA club named "YANA Club". It stands for 'You Are Not Alone'. I thought that was pretty cool.
wmlj1960 said
Jul 20, 2014
Thanks Dzdc,
It's reassuring to have someones guidance who's case is so similar to mine and 'been there-done that'. I understand more now about the lesions, but I'm still a little hazy on how they arrive at an AFP tumor "score". Is this done after a visual presence of lesions have been confirmed via MRI? And if so how are the test results displayed - eg. in your case '300 nanograms/milliliter? The reason I ask is because I see no test / result resembling AFP on any of my lab results I posted above. I didn't receive any of my MRI results but if no lesions were found via MRI before July 7th, then I suppose a test via AFP tumor marker was not done anyway. I don't know.
I need to ask my Dr about Splenomegaly. After reading some info on it, I have symptoms and have been treated for Pleurisy and bruised rib, which was no lasting help. I've been attributing it to possibly issues resulting from gunshots to my lung diaphragm, liver and spleen back in those glorious drugging years (not), but that hasn't made much since to me because the pain/inflamation gets progressively worse rather than staying constant or getting better.
I was told I likely had Gynecomastia but a breast mamo, CT, Bx was done to be sure it was not a malignant tumor etc. I've always been a slim guy with minimal chest area muscles so the enlargement symptom doesn't bother me much, appearance wise (Yet). Heck, I didn't sign up for this ride in order to get pretty anyway lol. I can easily deal with the soreness to touch so if spiranolactone is best for fluid reduction then I'll likely stick with it for now. and it's much less painfull than that paracentesis needle punching through my abdominal cavity wall!!!
Thanks again Dzdc, (I'm guessing your username means maybe 'Dragon's Day is Coming'?).
Dzdayscomin said
Jul 20, 2014
I have been down the road you are on less the drugs etc... and SVR most definitely is possible , we are the same age I am also cirrhotic with a MELD at 15-17 depending on the day it seems .
I have portal hypertension, Splenomegaly, gastric varicies , edema and mild acites that are at times modererate.
I have MRIs every 3 months and there was always questions about lesions but none have materialized, and now being UND after the S/O combo my last imaging looked better I was told and they feel its in part due to the reduced inflamation, I had AFP tumor scores at one point near 300 and now I think its like 50 something.
One thing id watch out for is the Gynecomastia with spiranolactone, it works the best for reducing fluid but that's a bummer side effect for guys, I switched to dyrenium ( TRIAMTERENE)seems to work well.
Although keep in mind this is considered a mild sx in comparison to the illness of cirhosiss.
Hang in there Mike
wmlj1960 said
Jul 20, 2014
Thanks everyone! I feel relieved to better know where I stand. I suspect my chances for SVR are not good but that just gives me that much more determination to comply with Tx.
One other thing I didn't mention is that the results from my routine MRI screening for liver cancer on July 7th showed what the nurse called lesions. She didn't give any details and I have that on my list of questions for my Dr. Evidently it is not something that demands immediate attention since they don't have me scheduled for another MRI until Oct. 1st.
I'll post back when I have more information on Monday.
Thanks again!!!
Isiscat2011 said
Jul 20, 2014
Well, there you go, Mike. Malcolm is already here. Good luck with your doctor's appointment on Monday and please let us know how it goes. :)
Huey said
Jul 20, 2014
I cannot answer your questions entirely, But I think I am close.
on 1
the first line just says ,, Hay we got a good hunk of bowl here"
(clinical information) = lab test. the lab says you got ........
no bleeding varacles is a good thing because bleeding varacles = Death
on 2
I don't know vary much about cirrhosis class's but the Billrubin is part of the liver panel test that you will have done often and it reflects the amount of waste from dead cells you have.
hepatic encephalopathy is caused by ammonia on the brain. your liver is not working well enough to take this from your system and it goes to your brain.
on 3
HCV RNA first number is your viral load,,,, the other number is the limit of the test,,, We can count it down to less than 43 but that is it.
The log thing I don't know about but i think it is just another way of quantifying the virus;
Isiscat2011 said
Jul 20, 2014
Hi Mike:
Malcolm can answer these questions best because he is a physician. He is on a different time zone but hopefully will be by soon.
I can tell you that your viral load is 722916.
I think what you are looking at is Child Pugh Scoring (A-B-C). The Child Pugh Scoring is a prognostic tool. There is a simple calculator that is more user friendly. You can input your lab values here to find out if you are A, B, or C: http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/
There is also a Meld Score Calculator here: http://www.hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/calculate-meld-score
I got upset when I input my numbers and I'm not sure how helpful these calculators are. As patients, and not physicians, we have an incomplete context for understanding this information. Also, these numbers can improve and often do following tx.
mallani said
Jul 20, 2014
Hi Mike,
To answer your questions:
Question #1: You have had an Endoscopy and gastric biopsy. On gastroscopy, you had changes suggesting portal hypertensive gastropathy (PHG). This is often an early stage before varices form and is due to engorgement of the gastric veins, causing a type of gastritis. You can bleed from PHG and it should be monitored.
Question #2: You have cirrhosis ( F4). You don't need a Fibroscan to confirm that. The CTP is more commonly called the Child-Pugh score, and it is used for measuring the prognosis of cirrhosis. Here's a basic link.
Question #3: Your Viral Load is 722,916 i.u./ml. The 5.859 is the same number, in Log. form.
I know it's confusing but we're here to help. Cheers and good luck!
wmlj1960 said
Jul 20, 2014
I'm trying to learn some about reading labs by searching this forum but it's very confusing with my pickled brain after 40+ yrs alcoholic/drugs or from hepatic encephalopathy confusion, or stress or all of the above. I read through Understanding Lab test: Entire Lesson. and am getting more familiar with Forum Abbreviations but I need to cheat and ask a few things.
Question #1: The first file, (GI 3-21 pg1) "GI Final Report" list "Gross Description (Verified). "A, Gastric." The specimen consist of three (3) gray-white fragments "A," 3p, all, tea bag, biopsy. and "Clinical Information (Verified)". HIV/HCV cirrhosis, probable portal gastropathy on EGD.
My doctor told me the GI results looked good as far as finding no bleeding varacies, but he didn't discuss this "portal gastropathy" or "gray-white fragments.
What does this information mean?
Question #2: I was looking at the CTP classification chart linked to by Tig56. I'm curious to know the stage of my cirrhosis (class A,B ,C etc.) which I'm confused about by looking at my total bilirubin = 1.3, INR value = 1.2. I do have Acities which was Mod - Severe before starting Furosomide/spironalactone and hepatic encephalopathy (suppressed with meds). I'm thinking it also has to do, in part, with extent of Fibrosis F0-F4. Is there enough information in the lab results I posted to determine this or will I need to have FibroScan results for that? I'm guessing my cirrhosis is rather mild but I'd rather have one of you guru's check me on this.
Question #3: The last file "Labs 5-2-14 pg2" list:
HCV RNA, PCR QUANT: 722916 H <43 IU/ml HCV VIRAL LOG: 5.859 H <1.633 LOG IU/ml
Does this mean my VL is 722916 or 5.859?
I'm sorry about having to ask questions that the answer is available to via searching, but information overload is taking a toll on my mental state right now. I'm already freaking myself out over starting a different HIV regimen and starting HCV Tx both at the same time and the nurse in charge of my HCV Tx (whom I normally communicate with my doctor through) has been on vacation this past week through it all. I started the new HIV Tx yesterday (darunavir/tenofovir/etravirine) and only have nausea, fatigue Sx's so far, which I'm already experienced dealing with. My HIV Dr. said I'm scheduled to start Sov/Riba Monday, but the final word will need to come from my HCV doctor Monday. One positive side of this is certainly that my Tx is moving foward and I'm not having to sit for extensive time waiting on a new DAA to be approved like I see so many others having to do.
Anyway, thanks for any help understanding these labs I have so far. I assume my SOT labs will be done Monday and I'll be able to understand those results a bit better.
Yes we do!
That's excellent news!
Quote:
When I was first Diagnosed HIV+ 20 years ago the prognosis was grim but I took those toxic drugs with all the Sx's because I wanted to live past the upcoming year. Then, with all the research producing better Rx's with less Sx's, I took them because I wanted to live past the upcoming 10 years. Then more advances and I could live a full life as long as I took the toxic Rx's, so I did.
Last week my HIV Dr. took me off my HIV Rx's in order to evacuate my system so I could start a new Rx regimen that will not have negative interactions with Sov/Riba and I felt really great during those days with no nausea etc. But now I'm back taking toxic drugs again because I want to live a full life.
That's really awesome news that we have a 'CURE' for HCV and a cure for HIV is just around the corner.
Thanks for the link Huey!!!
All sounds good, Mike. Looks like they plan to stay on top of your lab work. That's what we like to see! :)
GOOD NEWS!!! The nurse called a few minutes ago. I was given an Okay for Rx interactions with my new HIV Rx's, so I start Sov/Riba Tx in the morning. I suppose they will use my labs from 5-2-14 for SOT reference. My 1st post-SOT labs will be 8-6-14, then 8-19-14, then follow-up with Dr. 8-26-14.
Hi Mike,
So, you had a MRI liver on 17th Jan 2014, and a followup on 7th July 2014.
I suspect the 'intermediate' lesion in segment 5 should read 'indeterminate'. Classical case of fence-sitting! The 'no definite HCC' is reassuring.
I can't view the images as it requires a dedicated bank of monitors, and you need to compare the current images with the old ones. If you want to scan the whole report and post it, I'd be happy to give an opinion. However, all seems good at the moment.
The gynaecomastia is not uncommon in cirrhosis, along with testicular atrophy. Great fun!
Best of luck.
I also read that they have found a way to completely clear all the virons from a cell, HIV Virons that is.
Researchers fully 'delete' HIV from human cells for the first time
So far, HIV has eluded a cure because it installs its genome into human DNA so insidiously that it's impossible for our immune system to clear it out.
Here we go mallani:
My previous liver scan was done 1-17-14. The scan I had done since then was for breast tumor screening when Gynecomastia symptoms first became noticeable (lump in breast/soreness). So my liver MRI schedule was actually every six months, and now changed to 3 months. Sorry about my confusion on that.
I now have the 7-7-14 MRI Final Report HERE.
As you can see:
(1) Cirrhotic liver with intermediate lesion in segment 5, for which close attention on followup is recommended. There is no definite hepatocellular carcinoma.
(2) Minimal periheptic ascites.
I can send you the MRI file if needed? I certainly have no idea what I'm looking at on it.
Thanks again Malcolm for all your help!
Sure it can, and even in cirrhotics. My hardened (F-4) scar tissue will require more time but that's doable too. Yep, I'm certainly in it with you all!!!
News I read today says that the Sovaldi and Riba I am on has shown it can clear the HCV in co-infected people.
We are all in this together Keep your stick on the Ice. "Red Green Show"
My Tx nurse was on vacation all last week so she was very busy today and didn't contact me until 4pm. She didn't have much information for me and I understand, and I didn't push for it. I'd rather wait to let her get caught up on everything after vacation in order to lessen the chance for any mistakes / oversights etc. She did tell me that she had received the information from my HIV Dr concerning my new Rx's and my liver Dr will go over that and have an answer for me tomorrow about starting Tx. I'll post that info when I'm made aware of it.
Also, I told her about me having an issue with downloading my lab results from the Hospitals online patient portal. She told me that she, and her other patients, have been having the same problem and gave me the direct # for the supervisor in charge of that system, and she asked me to let her know what the solution turns out to be. So maybe I'll get that issue corrected tomorrow and be able to get my lab results in a timely manner from now on.
mallani wrote:
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Then I think either my liver condition has included portal hypertension to some extent for a few years, or I've been feeling something different.
I'm scheduled for 3 months. I ask the nurse today about AFP but she didn't have any figures available at that time, but my AFR must be < 250, hence not 3 monthly MRI's. So I'm happy about that!
Thanks for your help Malcolm!
-- Edited by wmlj1960 on Tuesday 22nd of July 2014 06:25:27 AM
Hi Mike,
Your splenomegaly is due to portal hypertension.
There are many benign lesions seen in the liver on MRI. The most common lesion is an haemangioma. If a lesion is suspicious for liver cancer, you would be scheduled for a followup after a month or two.
The AFP is a tumour marker. Although the normal range is <10 ng/ml, it may be elevated in cirrhotics with HCV. The level is usually <250.
Only 50-60% of HCC's secrete AFP, so it is not all that reliable, and that is why regular imaging is advised for cirrhotics. If your AFP is > 250, you need 3 monthly MRI's or CT's.
After successful Rx (SVR), the AFP usually normalises.
Just for interest, mine has never been above 6. It is not a routine LFT, and needs to be requested on a different form, as it is an assay. Cheers.
Thanks for explaining all that for Duane Cat. I type so slow you guys would be waiting a day or 3 for a response lol.
I read one of Malcolm's information post somewhere about the extended tx time needed for advanced cirrhotics being due to the hardened liver scar tissue making it hard for the blood to get to the virus that is within the scarred tissue. So less blood flow = less medicine gaining access to the virus. But it can happen. It just takes more time for the virus to eventually rear it's ugly face out into the accessible blood stream. So I'd better reconsider that unsalted popcorn deal you mentioned the other day because with my F-4 fibrosis, I may be here for a while.
I started my new HIV regimen Prezista/Viread/intelence, Friday and have a few Sx but nothing I can't handle and nothing like some of the old HIV Rx's that I survived through for many years. Surely Riba can't be much worse than that was, but if it's a physically harmful Sx issue in which my Dr chooses to discontinue Riba, maybe it will be after the Oct Ledi release. I like knowing about our plan B.
Yes it is. Congrats!!!
Dzdayscomin wrote:
I'm certain I don't have all my lab results. I haven't been very proactive obtaining a copy each time because I never knew anything about reading the values until now. The Methodist Hospital system where I have most of the labs done has online patient portal service which I thought this information was available at. I tried to download several of my lab results files today but was blocked. I intend to have that issue corrected tomorrow. There are several files on there and it's very possible AFP results will be.
It seems as though my MELD score differs depending on which calculator, but I get 12 on this one.
Platelets = 136 L
Not on a trans list yet that I know of. (Gee, I've got a lot of questions to ask tomorrow).
Paracentesis once in January, twice in Feb due to one failed procedure. So twice so far, i don't remember fluid quantity but I'll try to dig up that info somewhere around here. Abdomen is getting pretty tight lately so I suspect another acites nightmare coming soon.
Yes Mallani is certainly a blessing for us all. It's nice to have access to professional guidance when our regular Dr is busy/unreachable (like mine usually is).
Thank you for sharing your experience with me as we trudge this road to happy destiny together.
I am so sorry Mike, I did not read your sig. closer, I did not see the HIV thing, this is why I'm not much for guidance I just don't focus well enough.
Thanks Isiscat for stepping up and giving him the better info, Mike I know zip about co infection so anything I posted may just not apply to you.
I do wish you the very best Mike, and either way beating the HCV should certainly be a good thing for you .
BTW it means Duane's day is coming..... and was in reference to my positive outlook on beating the HCV and overcoming my liver disease.
Duane
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That is good news, Duane. :) I can't wait to see my numbers improve too!
I was reading your comments to Mike about the S/O or S/L tx options and I sure do like the idea of him not having to do Riba too. But he already has the drugs in hand and his doc wants him to get started now. Mike may get lucky and not have many Riba side effects. His hgb was in normal range as I recall and the anemia isn't nearly as bad as it was with the earlier Interferon/PI combos. Mike's insurance notified him that Olysio wasn't approved because it has not been tested on those who are co-infected with HIV and because it isn't FDA approved to use with Sovaldi yet.
The S/L combo has been tested on HIV/HCV coinfected people and it had a 100% SVR rate in 12 weeks in the relatively small clinical trial. The 24 week Sovaldi/Riba had an 82% for 1as which is still pretty good odds.
Mike, your SVR chances really are good. If you and Riba don't get along maybe they can substitute the Ledipasvir for the Riba come October. In the meantime the virus will be taking a beating. The Sovaldi/Ledipasvir works well with HIV drugs. Just a possible Plan B to keep in mind in case you need it. One way or another SVR is a very realistic goal for you.
After reading the cats reply it got me wondering if they did an AFP test in June with my 3 month transplant tests, they did, and I don't know why I overlooked it but it was 12.8 which falls right in line with cats statement of improvement after tx.
So I guess I like that because it was as low as it has ever been since I was diagnosed with HCV in 2012.
A little unexpected good news on a Sunday night........Thanks
Hey Mike:
AFP tumor markers are just plasma proteins in the blood. A blood test will reveal if you have them and at what level. AFP stands for Alpha-Fetoprotein. It is common for people who have hepc, especially those with cirrhosis, to have elevated AFPs. My AFP levels have been running between 50-100 for years. The AFP usually decreases, and often returns to normal following successful tx.
I have an excellent PCP and he runs an AFP check whenever I have blood-work done which is every 3-6 months. My hepatologist also runs AFP tests with blood work. You may have had an AFP test done but just don't know about it. Ask your doc on Monday.
Yes on the AFP N/M
I am surprised if you are cirrhotic that they have not tested. However if you are having regular imaging that is a better tool for catching HCC, and active liver inflamation is notrious for presenting a higher AFP result, and that can cause un-needed worry.
what is your MELD score? Platelets low ?Are you on the transplant list? If you have your creatinine, total billrubin and INR you can calculate it yourself...you sound as if you would be a great candidate for the S/O off label tx or the new one coming in Oct. Rather than having to do Riba.
Paracentesis is no fun, but if you have acites to the level you need that done your cirhosiss sounds fairly advanced.
I can only tell you what I have gone thru, and really I found out here i'm not smart enough to give true guidance, but Mallani can give you better medical info in really good detail.
But I'm happy to share the complications I have, and how my doctor is working with me to improve my quality of life.
Thanks Cat, It will go just fine I'm sure. I was searching around for info and came across a thread where you posted to another member: "I view you as a 'warrior' rather than a 'worrier' ".
Well, I've been doing more than my share of worrying lately, but I'm starting to feel more like a warrior in this battle, now that I know I have support.
I attended AA meetings in Jackson MS in the 1990's at an AA club named "YANA Club". It stands for 'You Are Not Alone'. I thought that was pretty cool.
Thanks Dzdc,
It's reassuring to have someones guidance who's case is so similar to mine and 'been there-done that'. I understand more now about the lesions, but I'm still a little hazy on how they arrive at an AFP tumor "score". Is this done after a visual presence of lesions have been confirmed via MRI? And if so how are the test results displayed - eg. in your case '300 nanograms/milliliter? The reason I ask is because I see no test / result resembling AFP on any of my lab results I posted above. I didn't receive any of my MRI results but if no lesions were found via MRI before July 7th, then I suppose a test via AFP tumor marker was not done anyway. I don't know.
I need to ask my Dr about Splenomegaly. After reading some info on it, I have symptoms and have been treated for Pleurisy and bruised rib, which was no lasting help. I've been attributing it to possibly issues resulting from gunshots to my lung diaphragm, liver and spleen back in those glorious drugging years (not), but that hasn't made much since to me because the pain/inflamation gets progressively worse rather than staying constant or getting better.
I was told I likely had Gynecomastia but a breast mamo, CT, Bx was done to be sure it was not a malignant tumor etc. I've always been a slim guy with minimal chest area muscles so the enlargement symptom doesn't bother me much, appearance wise (Yet). Heck, I didn't sign up for this ride in order to get pretty anyway lol. I can easily deal with the soreness to touch so if spiranolactone is best for fluid reduction then I'll likely stick with it for now. and it's much less painfull than that paracentesis needle punching through my abdominal cavity wall!!!
Thanks again Dzdc, (I'm guessing your username means maybe 'Dragon's Day is Coming'?).
I have been down the road you are on less the drugs etc... and SVR most definitely is possible , we are the same age I am also cirrhotic with a MELD at 15-17 depending on the day it seems .
I have portal hypertension, Splenomegaly, gastric varicies , edema and mild acites that are at times modererate.
I have MRIs every 3 months and there was always questions about lesions but none have materialized, and now being UND after the S/O combo my last imaging looked better I was told and they feel its in part due to the reduced inflamation, I had AFP tumor scores at one point near 300 and now I think its like 50 something.
One thing id watch out for is the Gynecomastia with spiranolactone, it works the best for reducing fluid but that's a bummer side effect for guys, I switched to dyrenium ( TRIAMTERENE)seems to work well.
Although keep in mind this is considered a mild sx in comparison to the illness of cirhosiss.
Hang in there Mike
Thanks everyone! I feel relieved to better know where I stand. I suspect my chances for SVR are not good but that just gives me that much more determination to comply with Tx.
One other thing I didn't mention is that the results from my routine MRI screening for liver cancer on July 7th showed what the nurse called lesions. She didn't give any details and I have that on my list of questions for my Dr. Evidently it is not something that demands immediate attention since they don't have me scheduled for another MRI until Oct. 1st.
I'll post back when I have more information on Monday.
Thanks again!!!
Well, there you go, Mike. Malcolm is already here. Good luck with your doctor's appointment on Monday and please let us know how it goes. :)
on 1
the first line just says ,, Hay we got a good hunk of bowl here"
(clinical information) = lab test. the lab says you got ........
no bleeding varacles is a good thing because bleeding varacles = Death
on 2
I don't know vary much about cirrhosis class's but the Billrubin is part of the liver panel test that you will have done often and it reflects the amount of waste from dead cells you have.
hepatic encephalopathy is caused by ammonia on the brain. your liver is not working well enough to take this from your system and it goes to your brain.
on 3
HCV RNA first number is your viral load,,,, the other number is the limit of the test,,, We can count it down to less than 43 but that is it.
The log thing I don't know about but i think it is just another way of quantifying the virus;
Hi Mike:
Malcolm can answer these questions best because he is a physician. He is on a different time zone but hopefully will be by soon.
I can tell you that your viral load is 722916.
I think what you are looking at is Child Pugh Scoring (A-B-C). The Child Pugh Scoring is a prognostic tool. There is a simple calculator that is more user friendly. You can input your lab values here to find out if you are A, B, or C: http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/
There is also a Meld Score Calculator here: http://www.hepatitisc.uw.edu/go/management-cirrhosis-related-complications/liver-transplantation-referral/calculate-meld-score
I got upset when I input my numbers and I'm not sure how helpful these calculators are. As patients, and not physicians, we have an incomplete context for understanding this information. Also, these numbers can improve and often do following tx.
Hi Mike,
To answer your questions:
Question #1: You have had an Endoscopy and gastric biopsy. On gastroscopy, you had changes suggesting portal hypertensive gastropathy (PHG). This is often an early stage before varices form and is due to engorgement of the gastric veins, causing a type of gastritis. You can bleed from PHG and it should be monitored.
Question #2: You have cirrhosis ( F4). You don't need a Fibroscan to confirm that. The CTP is more commonly called the Child-Pugh score, and it is used for measuring the prognosis of cirrhosis. Here's a basic link.
http://en.wikipedia.org/wiki/Child-Pugh_score
From the information you give, you're a Stage B.
Question #3: Your Viral Load is 722,916 i.u./ml. The 5.859 is the same number, in Log. form.
I know it's confusing but we're here to help. Cheers and good luck!
I'm trying to learn some about reading labs by searching this forum but it's very confusing with my pickled brain after 40+ yrs alcoholic/drugs or from hepatic encephalopathy confusion, or stress or all of the above. I read through Understanding Lab test: Entire Lesson. and am getting more familiar with Forum Abbreviations but I need to cheat and ask a few things.
Some of my lab and GI results are HERE.
Question #1: The first file, (GI 3-21 pg1) "GI Final Report" list
"Gross Description (Verified). "A, Gastric." The specimen consist of three (3) gray-white fragments "A," 3p, all, tea bag, biopsy.
and
"Clinical Information (Verified)". HIV/HCV cirrhosis, probable portal gastropathy on EGD.
My doctor told me the GI results looked good as far as finding no bleeding varacies, but he didn't discuss this "portal gastropathy" or "gray-white fragments.
What does this information mean?
Question #2: I was looking at the CTP classification chart linked to by Tig56. I'm curious to know the stage of my cirrhosis (class A,B ,C etc.) which I'm confused about by looking at my total bilirubin = 1.3, INR value = 1.2. I do have Acities which was Mod - Severe before starting Furosomide/spironalactone and hepatic encephalopathy (suppressed with meds). I'm thinking it also has to do, in part, with extent of Fibrosis F0-F4. Is there enough information in the lab results I posted to determine this or will I need to have FibroScan results for that? I'm guessing my cirrhosis is rather mild but I'd rather have one of you guru's check me on this.
Question #3: The last file "Labs 5-2-14 pg2" list:
HCV RNA, PCR QUANT: 722916 H <43 IU/ml
HCV VIRAL LOG: 5.859 H <1.633 LOG IU/ml
Does this mean my VL is 722916 or 5.859?
I'm sorry about having to ask questions that the answer is available to via searching, but information overload is taking a toll on my mental state right now. I'm already freaking myself out over starting a different HIV regimen and starting HCV Tx both at the same time and the nurse in charge of my HCV Tx (whom I normally communicate with my doctor through) has been on vacation this past week through it all. I started the new HIV Tx yesterday (darunavir/tenofovir/etravirine) and only have nausea, fatigue Sx's so far, which I'm already experienced dealing with. My HIV Dr. said I'm scheduled to start Sov/Riba Monday, but the final word will need to come from my HCV doctor Monday. One positive side of this is certainly that my Tx is moving foward and I'm not having to sit for extensive time waiting on a new DAA to be approved like I see so many others having to do.
Anyway, thanks for any help understanding these labs I have so far. I assume my SOT labs will be done Monday and I'll be able to understand those results a bit better.