Home › Forums › Main Forum › Patient Stories › ‘In which LG seeks Redemption & makes new friends’
- This topic has 522 replies, 53 voices, and was last updated 7 years, 9 months ago by Dan.
-
AuthorPosts
-
1 March 2016 at 1:55 am #12997
I heard that Gaj, Hmm is it scary? I veguely remember someone saying they took their music and headphones in there once ?
I also get a fibroscan, same day
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC1 March 2016 at 2:02 am #12998Hmm is it scary?
Not unless you’re claustrophobic.
I’ve never had one myself and hope to never need one – I am claustrophobic. They’d have to have me valiumed out to get me into one.
dt1 March 2016 at 2:06 am #12999Not scary, I found it mostly boring and the noise a bit irritating. If they allow music and headphones it would be a good way to spend the time. Have to remember that if I have another one.
edit: yeah, it is a bit small. Just tell them if that worries you, I’m sure they’ll understand and have a plan for those situations.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
1 March 2016 at 3:36 am #13003MRI is very noisy definitely take earplugs or headphones
Fortunately it’s not for epilepsy! Then it’s your head in there.
You’ll be right babe, it’s exactly as Gaj described I have accompanied my kid to plenty she just chugs along for her brain one alone these days
It’s slightly claustrophobic but she goes in head first dunno about the liver maybe you’ll get lucky and your head will stick out the top end
Anyway yep its loud
No not scary at all1 March 2016 at 6:42 pm #130341 March 2016 at 7:47 pm #13038LG – see my post here:
http://fixhepc.com/forum/viral-load-results/765-quantitative-pcrs-with-lloq-missing-uk.htmlMedichecks uses The Doctor’s lab. I haven’t had time to follow up as thoroughly as I want to on this issue.
dt6 March 2016 at 12:26 pm #13421Yeah I’ve lost count how many MRIs I’ve had for different things
Including one for suspected epilepsy – so you’re right in there lol. The machines used to be a lot more cramped once upon a time; I remember my nose almost touching the ceiling of it, that was a bit claustrophobic! Seem to have improved the design in more recent years. No sweat LG, you’ll be fine – and given earplugs too
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 – 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 – 6 weeks UNDETECTED
AST 26
ALT 266 March 2016 at 5:51 pm #134367 March 2016 at 2:02 am #13445Thanks Zhuk, Yep, you were right, MRI was easy and kinda cool ! The Doc there said it was the “Rolls Royce of MRI machines with the Luis Hamilton of operators scanning me” .
Debs, it was a pretty amazing experience. This new technology is pretty awesome, so glad I did this. It was part of ongoing trials for this new diagnostic for liver disease. I will post more about it in the week as I just got home and am pretty tired, but amazingly the (top) Doc said my liver is in pretty good shape considering . I saw a full colour scan of my liver (spleen and other stuff too!) – Never knew how far round to the left the liver went and how big it is! Getting my report in writing next week and will post more, but at this point in time, my liver is looking pretty healthy for someone with HepC. Just need to kill of those little ******* virus left.
LMS reading of 1.5 (range between 1-4 anything over 2 pretty concerning) and get this….. Also had a fibroscan to compare which has gone down to a frankly mind blowing <6 !!! I actually can't remember the actual figure, I was so stunned, but it's either 5.2 or 5.6 !!! All I can think is, healthy diet, no booze etc but my instinct is the meds helping liver function has caused this.
Pretty emotional really after the cirrhosis scare - Got a bit teary talking to the lovely Doc .
I need VL to go down to UND now for things to be much more hopeful - let's see what happens hey.
Big to all .
(edit) Fibroscan machine showed an 'accuracy of reading graphic" (something else I learned) - It was pretty accurate
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC7 March 2016 at 2:14 am #13446
Glad to hear it was so good! You must have been pretty apprehensive wondering what the state of your liver might be.
How lovely and reassuring for you and also all that top tech and expertise focused on you!
Well done and good luck with your imminent VL results, hope you get an UND!
Deb X7 March 2016 at 2:33 am #13447I learnt a few things. Interestingly, where I have recently feeling discomfort, liver area, is where I have the least fibrosis (right side associated with liver) – In fact, the fibrosis I have, is more on the left side of my liver.
All rather mind-blowing one way or another and I feel grateful and honoured to be part of this research. I really hope this goes on to help many more patients with non- invasive liver disease diagnostics in the future. – These people are doing awesome work and we are (according to the Doc) “20 years behind other conditions / diseases (such as heart disease eg) in diagnostics, treatments etc “Well, I told him the patient perspective, but I’m sure he knows that
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC8 March 2016 at 1:41 am #13478Hi LG
Good news to read of your liver health
A relief to have the question mark blotted indeed
I’m sure you’ll get UND soon it can just happen right at EOT and sometimes even just after remember, and we are the first guinea pigs to do this tx globally there is limited data compared with old tx regimes. What we do see is that clearance in general has a fantastic prognosis over 90% and if the annoying happens re-treating or extending are easy because we have access to the meds here thanks to this club.
Nonetheless I am crossing my flippers and fins your bloods come back UND next tests now we are in our third trimester as I call it haha!
Now you have had an MRI you see it’s not scary just noisy huh, we have lovely new whiz bang machines here too in Neurology but they still make a hell of a din. Did you just have your lower body in not head? I can’t imagine why they would put your head in for no reason with all that magnetic stuff. When my youngest was young I used to sit at the end of the tube while she had her epilepsy ones and a little mirror enabled her to see me though her head was held in position by a device. I wore headphones supplied by the hospital to block out the noises. Those were long MRIs that was over ten years ago now.
When will you have a blood result? Any updates?
Again, great news about your liver health
Love from Ariel8 March 2016 at 2:28 am #13479Hey Ariel I had to go in head first, but there was a gap at the end so not so bad. I had large headphones on and the technician was talking to me throughout “breathe in, breathe out, stop breathing” in a sing-song kind of voice – Quite meditative in a way once I got used to it! She said my liver was nearer to my head so I needed to go in head first (yes I did ask !) Didn’t find it that noisy, really, they must have been good headphones ! It reminded me of those crazy sounds you get in-between rides at the fair-ground (worked that out afterwards) so maybe some subconcious happy childhood memories .The MultiLiverScan new diagnostic was awesome stuff. Yes, pleased about results, I was 8.7 (from a good good reading) in December 14, so at least something’s improved hey ?
Yes, next test results – Trying not to think about it, got to wait on results. Can see me extending either way, but with what and for how long is a decision to be made soon. And yes, thanks to MonkMed / Fix HepC not the NHS which would probably have offered me 8 weeks only, can’t imagine the stress of that. Looks like the Abbvie treatments with Riba are going to be popular with our health service, I see Scotland (who are way ahead of England re treatment) have that as their 1st option now and a few patients have been offered in England now too.
Thanks for your good wishes, Ariel Keep well as can be.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC8 March 2016 at 3:49 am #13484It reminded me of those crazy sounds you get in-between rides at the fair-ground
Haha yes, I’ll have to remember that description.
Glad to hear you got pleasant news regarding lack of cirrhosis and improved fibrosis levels too! You helped advance the science at the same time so another bonus. Am sure you’ll get excellent advice about next steps whichever way you go.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
8 March 2016 at 4:01 am #13486Cheers Gaj
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC -
AuthorPosts
- You must be logged in to reply to this topic.