Hep C Discussion Forum

kalelalee · Member

RE: Approved for 24 weeks Harvoni after post Sovaldi / Ribavirin relapse.

basser · Senior Member

had blood tests results last week.platelets were low .have been for last 3 yrs.highest ive been in that time is 78.last wks i was 50.was hoping being svr they would be higher.but having enlarged spleen and cirrohsis they havant improved.

Gracie · Guru

Mine are low too at 80. My hepologist said the same thing. It's a symptom of cirrhosis and really nothing to worry about unless your getting brain surgery... Lol. There are many who have low platelets for many reasons and they do fine. Small price to pay for having hep c for 30+ years if I reach SVR.

Matt Chris · Guru

Hey Mike

Your right on schedule, forget about the platelets they will rise a little bit later.

Enjoy the UND feeling and the security that goes along with it.

matt

wmlj1960 · Moderator

Gracie, I just noticed that VL result is from August. That's what the nurse handed me yesterday along with the other pages and I assumed it was done 10-27 when the other test were done. It doesn't matter though - I'm quite certain my VL is 'not detected' at this point.

I did ask my doctor about the low platelets Tig and he just said it was because of my cirrhosis. I didn't dig any further, I'm getting accustom to that coming up low. I'm afraid if they gave me a unit of good blood I would get all excited and cut myself on something really bad. biggrin If he decides on giving me blood at some future point I'll yell for you to send the bubble wrap.

SVR here we come!

Cinnamon Girl · Guru

Nice looking numbers there, Mike, looks like you`re doing great!

You`ve come so far in the year since your horrendous accident and made really excellent progress. You have a lot to be proud of, Mike, I hope you know that, and it`s truly wonderful to see the progress you`re making getting your life back on course.

Keep going, you`re well on track for SVR I would say! smile

Tig · Admin

Excellent reports Mike! Your Platelets suck, but you've been dealing with that for awhile. Did the doc say anything about that? I bet you'd feel like Superman if they gave you a unit of blood! I think you've got every reason to be pleased with your progress. SVR looks very probable this time and you damn sure deserve it. I do have that bubble wrap ready to ship! First time I hear of you cutting yourself, I'll be up there to wrap you up myself, ha, ha! Congrats buddy, this is looking good....

Gracie · Guru

Way to go Mike! Awesome results. Seeing that Undetected word just makes my day! I'm a bit ahead of you. My last day is December 19. This really is happening for us! Keep up the good work!

wmlj1960 · Moderator

Hepatologist was yesterday - still looking good. More labs will be Dec. 3, EOT will be Jan 8, and I'll see my hepatologist again Jan 12.

My SOT with Harvoni was 7-25-15.

Last year my SOT with Sov/Riba was 7-24-14.

The accident that jeopardized my last treatment was 1 year ago yesterday.

= Tig, do you still have that bubble rap ready for me? biggrin

Edit attachment

-- Edited by wmlj1960 on Thursday 5th of November 2015 04:15:06 AM

mallani · Guru

Hi Mike,

Great report. Your lesion in segment 5 sounds a bit like mine. I had a 10mm lesion in segment 2 which had me worried for a few years (10 years later it measures 12mm but has not changed in appearance).. It was hyper-intense on contrast but had very slow washout. It's either an atypical haemangioma or small area of focal nodular hyperplasia. Yours is probably the same but keep an eye on it. I've got gallstones as well.

Robert: Li-rads (Liver Imaging Report and Data System) is a new system used by the American College of Radiologists. I've never used it but it sounds good. Most HCC's are obvious, but a few need watching to get an exact diagnosis. This new system uses a set of criteria which predict likelihood of HCC, particularly in cirrhotics. Cheers.

Cinnamon Girl · Guru

Great to see your latest report looking so good, Mike, you must be very pleased with the way things are going! smile

robertsamx · Guru

Thanks Tig. Good link. Im ok as long as the lesion"s dont grow. RC

Tig · Admin

Great report Mike! Looking at his interpretation, I'd say you've got some good improvements happening already. Congrats on that excellent news!

RC, This is Malcolm's area of expertise, but it's basically a lesion grading system.

Liver Imaging and Reporting Data System Li-Rads

http://radiopaedia.org/articles/li-rads

robertsamx · Guru

Mike, looks like a good report. Dont you just hate waiting for results? Last year they saw 4 spots in my liver ranging from 5mm to 15mm. I have had many MRI"s, and they compaired the last 3 . My last one on 10-2-15, this is what they said (multiple hepatic lesions measuring up to 15mm,not perceptibly changed from 11-6-14. Some of them show arterial enhancement and others do not. Overall assessment: LIRADS category3, Intermediate probability for HCC) So I looked up LIRADS and found that category 3 is a C.Y.A. Meanng the spots could go either way. The good news is they are not growing and some show no wash out. My bigest fear is HCC. Im glad your report came back good. Dose anyone know anything about the LIRADS rateing system? RC

wmlj1960 · Moderator

My hepatologist is doing HCC MRI's every 6 months now instead of every 3 and this latest report looks absolutely marvelous!

My lesion in segment 5 is stable, portal vein is patent and my spleen is no longer enlarged.

I can't complain a bit. smile

-- Edited by wmlj1960 on Tuesday 27th of October 2015 09:52:47 PM

-- Edited by wmlj1960 on Tuesday 27th of October 2015 11:10:39 PM

Penelope PePod · Senior Member

Hey Mike,

Good looking numbers!

Penny

ps...My hubby's platelets were in the 50s for years, so I'll tell you what I told him: "Don't run with scissors". smile

-- Edited by Penelope PePod on Thursday 15th of October 2015 03:12:45 AM

coolheat · Senior Member

Mike, you've been through a lot. I admire your perseverance. I like what Tig said, glad you are staying in pursuit of that dragon. Nice you are keeping your team in line as well.

xtra · Veteran Member

Groupergetter:

I am going to start another thread about the links Groupergetter posted. It may be a long, involved topic for a separate discussion. I put it in General "Understanding Lab Tests"

wmjl

I am looking forward to your progress. Good Luck!

-- Edited by xtra on Thursday 15th of October 2015 01:46:07 AM

-- Edited by xtra on Thursday 15th of October 2015 02:48:04 AM

Groupergetter · Guru

xtra, I previously posted this link: http://gihep.com/calculators/hepatology/ast-to-alt-ratio/ note it also has fibrosis 4 and many other liver health calculators. Just plug in your numbers. Remember this is just an estimator and may not give totally accurate information.

xtra · Veteran Member

wmlj

I have learned so much from you already. I did an AST/Platelet ratio after you mentioned that. It was .4 so it looks like whether I dither or not, I am going to be draggin' a dragon to the dead dragon pile also.

I can't decide whether to divide ALT/AST or AST/ALT but either way it is .88 to 1.2. I have a feeling I am getting close, (and only close I hope) to where the dragon is going to win the game.

The only other elevations besides ALT/AST were Bun/Creatinine 9 (11-26) and Hematocrit 47.3. But, many of these normal levels are crowding the line such as the ALT/AST ratio.

I have learned all of this in a few days, with a little help from my friends.

I hope for Your Dragon, Game Over!

-- Edited by xtra on Wednesday 14th of October 2015 11:51:16 PM

-- Edited by xtra on Wednesday 14th of October 2015 11:54:16 PM

wmlj1960 · Moderator

You all taught me to be my own advocate and how to. So I'm sure my success with staying as healthy as I have has a lot more to do with applying the knowledge I've learned on this forum than it does with my healthcare team. They need constant supervision and I've been voluntarily providing them with that although it is a full time job lol. I've got them pretty busy this next month with: Regularly scheduled liver MRI done this morning, 12 week Hep C labs on 10-27, Hepatologist on 11-3, back surgeon 1 year post-op appt. on 11-10, foot surgeon 11-19, PCP check-up 11-20. At this point I'm still working on all their December assignments lol.

And yes M M, I have January assigned to "Draggin" a "Dragon" to the dead dragon pile. biggrin

Cinnamon Girl · Guru

Hi Mike, those results are looking good to me, and I can see that you`re keeping yourself well hydrated!

You have a lot of considerations to take into account, but it looks like you`re keeping on top, and well on track.

Wishing you all the very best of luck, you set an excellent example to us all with your fortitude and positive attitude! smile

mallani · Guru

Looking good Mike. Keep trucking.

Matt Chris · Guru

Hey Mike

Congrats on your latest labs, I must admit I so very little about how to read & understand the balance and indicators with your co-morbidities. But your positive mindfulness is very apparent and will carry you a very long way toward reaching SVR. Thanks for all your contributions in the forum all your other areas of your life that you give of yourself, it will come back to you in great blessings.

matt

Tig · Admin

Those are good numbers Mike! Looks like you're continuing to hydrate adequately and if you could turn the anemia around, you'd be doing it in tall cotton, if you get my drift! The rest of your tests are pretty impressive.

Following the accident and going through the surgeries, completing the Sov/Riba treatment, continuing the HIV protocol, etc., etc., etc., had to have caused a significant strain on your system that effected your recovery. How could it not have? Considering that, you have done a remarkable job of keeping your health in great shape. I tip my hat to you and your healthcare team! You have persevered through a lot of adversity and were still able to positively contribute to your care plan (not to mention to this forum). With that kind of care and attention to detail, I have no doubt your future will be bright and blessed with those 3 letters searching for a home behind your name, SVR...

Keep it up buddy, you've got a great group of friends here, wanting nothing but the best for you and we all expect "success" will be a big part of your future!

xtra · Veteran Member

Great News! I find your posts very interesting. I will be glad to see you complete this round of Harvoni successfully.

The worst thing about the Dragon is that "secondary infection" status and the Drag on the immune system.

You will be so much healthier without that Draggin' Dragon!

The Dragon is a Drag! I am looking forward to you really kick Dragon *ss this time around.

wmlj1960 · Moderator

Here's my most recent lab work ordered by HIV doctor 9-28-15. It looks like I don't have an issue with Ledipasvir / Tenofovir toxicity. I'll sleep better tonight I just better not cut myself on anything with platelet count 50.

wmlj1960 · Moderator

The only changes I have noticed are itchy and increased nausea but the nausea is not excessive. I'm actually accustomed to the nausea caused normally by probably a combination of tenofovir, etravirine, darunavir, valacyclovir, rifaximin, laculose, tapentadol, LOL, just not quite this noticeable. The itching gets a little aggravating at times but I feel fine and this is probably nothing to worry about.

[rant] But, I was told by the pharmacist that this needs to be monitored, my doctor agreed and told me that it would be monitored as a preventative measure. Based on my past experience with this doctor, this test was probably just overlooked / forgotten about when the lab order was made. It would make me feel peace of mind to get it done as well as because it's what I was told would be. I don't want be to asking the question later on, "why did this happen" [/rant]. lol

A reason I like to post my results here is because I don't know near as much as you guys do about what they mean. When you all tell me I'm doing good, that gives me peace of mind. Thanks for that Tig, mallani and the rest of you! I'm happy with my current progress and would rather not change a thing with my medications, diet, routine etc. unless absolutely necessary. Onward to SVR.

Tig · Admin

Hey Mike,

I guess my first question is, are you having any problems that might be related to this, ie, renal? Any noticeable side effects that you weren't experiencing beforehand, that are above and beyond the "normal" Harvoni complaints? After reading that paper, it seems that this adverse reaction is more a possibility than a certainty and if you're not experiencing any noticeable effects, you're probably fine. I read one section that listed this:

"The coadministration of ledipasvir/sofosbuvir and ARV regimens containing TDF is associated with increased exposure to TDF, especially when TDF is taken with an HIV PI boosted with either RTV or cobicistat (COBI)"

Are you on either of those? There doesn't seem to be any other problems associated with the combinations you're on otherwise. Considering your pharmacist was on top of this and you had a limited exposure before monitoring began, I wouldn't be overly concerned. Had this gone on and you started to notice problems, then I'd be a bit more interested in finding out why this was allowed to happen. One of the safety nets in your care fortunately caught this and you're back in business. I'd ask to have those additional tests ran, just to quell your concerns. But the rest of your labs are stellar, nothing wrong there. (I'll put away my internet medical license now, lol!) Malcolm should be able to shed more light on this.

Stay the course my friend, I think you're doing pretty well in my opinion and would pat that pharmacist on the back next time in! Good luck buddy...

wmlj1960 · Moderator

After a difficult time getting these lab results from my HIV doctor I finally got them yesterday. These were done 8-6-15, 6 days before the results I posted previously. Platelets were 81 on this result. I suppose either platelet count has a tendency to change like this or this is a result of the test being done by a different lab. Probably the latter? But the main reason I was so interested in this report was to see if test were done to check for issues with drug-to-drug interaction between Ledipisvir / Tenofovir (which I take). I don't see the results I was looking for: estimated creatinine clearance, serum phosphorus, urine glucose, and urine protein - according to this information:

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/26/hiv-hcv

It looks to me that both my HIV and liver doctors may have forgot about this drug interaction issue which I made sure they were both aware of, thanks to my pharmacist. Any suggestions?

wmlj1960 · Moderator

Matt Chris wrote:
that ALT seems strange

These are ALT / AST history that I can find since I was hospitalized for 3 days 1-17-14 for liver problems and to get the acites fluid drained out of my abdominal cavity (paracentesis). Dx then was cirrhosis.

Date       AST / ALT

1-17-14     307 / 52
1-17-14     280 / 44
1-27-14     231 / 51
2-26-14      85 / 31
5-2-14      94 / 24
8-6-14      28 / 14
8-19-14      21 / 13
8-26-14      25 /   7
10-7-14      23 /   5
1-7-15      26 /   8
3-23-15      47 / 16
4-15-15      45 / 21
6-25-15      37 / 16
8-12-15      22 /   7

Matt Chris · Guru

Hey Mike

Great lab results, that ALT seems strange but you will take any day of the week.

from here its all down hill

Happy for your bro.

matt

wmlj1960 · Moderator

mallani wrote:
What's with the ALT and AST???

8-12-2015 = AST - 22
ALT - 7

-- Edited by wmlj1960 on Thursday 17th of September 2015 03:30:09 AM

mallani · Guru

Mike,

Congrats on the Undetected.

What's with the ALT and AST??? I've never seen numbers like that in a cirrhotic. Cheers.

robertsamx · Guru

Good results Mike, Getting it done with out Riba!! Nice!! Happy for you RC

Penelope PePod · Senior Member

Mike,

Those are awesome results! What a wonderful word - 'UNDETECTED'. I never realized how special it was! And your ALT & AST look marvelous.

When I read your story, it made me cry. Now your lab results are making me cry. Cut it out already!

smile Penny

Cinnamon Girl · Guru

Yes, your platelets are pretty low, Mike, but as Tig said, they`re holding steady at least, and you know your doctor is monitoring your labs. .

Take care of yourself and very best of luck with the rest of your treatment! smile

Tig · Admin

Excellent news Mike!!! Seeing that undetected value on the report is the sign that you're playing with a real game changing treatment and winning the game. I never get tired of seeing results like that! The rest of your report looks good, the platelets are low, but have remained steady at 66. Stay away from sharp things and you'll be okay, lol! Keep up the great job Mike, you're on your way buddy!

wmlj1960 · Moderator

Thanks Jill. I'm a little concerned about the low (66) platelets, but that's been a constant issue since long before starting the Harvoni and it hasn't caused any problem so far that I'm aware of.

Cinnamon Girl · Guru

Hi Mike, that`s wonderful news, congrats on your first undetectable result this time around with Harvoni!

I had a look at your labs and they`re looking great... AST 22 and ALT 7!! I think you should be very happy about those, and I am too! It`s all looking good - and no riba in the mix to drag your Hgb levels down! smile

wmlj1960 · Moderator

UNDETECTABLE 4 1/2 weeks post-SOT.

My hepatologist office finally sent my lab results to me, received today.

Harvoni SOT was 7-25-15. I had blood drawn on 8-12-15.

Viral load test was done 8-25-15. Results are attached. I'm sure happy about this!!! smile

My Labs

Edit: Added 2 attachments and link

-- Edited by wmlj1960 on Friday 11th of September 2015 09:51:06 AM

MechanicMike · Veteran Member

Man, that's great news Mike! Your positive attitude is amazing and infectious. You'll kick the dragon's butt once and for all this time! Sending prayers and well wishes your way... After everything you've been through, I can't think of anyone who deserves SVR more than you. Best of luck to you biggrin

Tig · Admin

Thats great news Mike! I think you're gonna slay the beast this time. Remember what I told you, stay alert and if you feel any danger, let me know, I've got the bubble wrap ready to go, lol! Good luck old friend, you deserve this! smile

wmlj1960 · Moderator

Jaded wrote:

Great news...you will do well. One thing to consider...instead of taking it a 9 am consider 11 pm. That's how I do it. For the 1st 8 weeks I noticed fatigue would set in about an hour after taking the pill. This way you just go to bed and when you wake up you feel great. I think it also helps to sleep better if you take it late.

The reason for taking Harvoni in the AM is that the HIV meds I take at 9pm make me feel sick too, probably much worse than the Harvoni will. Also, the 2 need to be taken 12 hrs apart due to a drug interaction between Ledipasvir and one of my HIV meds which can cause major problems including renal failure. After 21 years of my HIV virus becoming resistant to several family's of HIV meds, I have no more options left other than what I take now. So I can't change the HIV meds. The doctors will be monitoring my labs closely for any major interaction problem. I've sure got my fingers crossed hoping this won't be an issue.

Groupergetter · Guru

Congrats Mike, you'll do well on the Harvoni. Won't be long and you'll find SVR. I discussed the Riba with my doc on several occasions she didn't prescribe it. Take care

Jaded · Senior Member

wmlj1960 wrote:
Here we go. Harvoni was delivered this morning - I'll be hopping on the train tomorrow at 9am.
Malcolm and Robert, my Hepatologist and HIV Dr's both agree that the benefit of adding Riba would not be worth the negative Sx's considering my current immune system status. That's okay with me. I won't miss that crap one bit.

Great news...you will do well. One thing to consider...instead of taking it a 9 am consider 11 pm. That's how I do it. For the 1st 8 weeks I noticed fatigue would set in about an hour after taking the pill. This way you just go to bed and when you wake up you feel great. I think it also helps to sleep better if you take it late.

Brian1412 · Guru

you hoing to rock it man. Peace

Gracie · Guru

Welcome aboard Mike! I'm finishing Week 3 tomorrow. 24 weeker as well, no RIBA. Doc said RIBA only used for 12 weeks, not necessary for 24 weeks. Onward to SVR!

Brian1412 · Guru

your going to be plesantly surprised.as everyone says maybe a slight headache. it goes away quickly.just good hydration with wTer. i took mine at pm and t seemed to flow easily to allow it to not being in anyway. intruive to your dailiny routine. biggest thing for me was. not losing the pills.i carried. then every where. in a stand up tupperwear. in my bac (pack. i live in a hot climate. w nor issues. we will ride the journey with you and see you on the svr. plarform

peace

wmlj1960 · Moderator

Here we go. Harvoni was delivered this morning - I'll be hopping on the train tomorrow at 9am.

Malcolm and Robert, my Hepatologist and HIV Dr's both agree that the benefit of adding Riba would not be worth the negative Sx's considering my current immune system status. That's okay with me. I won't miss that crap one bit. biggrin

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