Welcome, Guest
Username: Password: Remember me

TOPIC: Feels like possible relapse - plan not panic!

Feels like possible relapse - plan not panic! 5 years 7 months ago #15159

  • tweakmax
  • tweakmax's Avatar
  • Offline
  • Elite Member
  • Posts: 256
  • Thank you received: 301
  • Karma: 2
All of us need prayers. I also become worried after treatment. Hope the odds are in our favor. If not, have to treat again.
Last Edit: 5 years 7 months ago by tweakmax.
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, Phoenix, pat1, mgalbrai, Ariel, Fara, Juen

Feels like possible relapse - plan not panic! 5 years 7 months ago #15160

  • sabrecat
  • sabrecat's Avatar
  • Offline
  • Elite Member
  • Posts: 259
  • Thank you received: 740
  • Karma: 10
Hi Phoenix,

my EOT was 12th April and I felt good at that time and for a while after.

Have been feeling a bit down last few days and part of this is having less energy (?), OR the will to use what I have got.

The 'recurrence of a HCC after DAA' stuff did have a jarring note with me. More so in that when I reached EOT, I had little inclination to have another blood test until about 12 weeks later. It would be then I would find out whether the DAA's worked. Proviso I did not start feeling really crook in the meantime.

But you can' bugger around with a HCC so I am told (and having a great big upside down letter J shaped scar on my belly attests to this line of thought), so I am off to see the G.P. for referrals to have AFP checked this Friday.

And of course, before DAA's my AFP went up with my Hep C anyway, so to validate any AFP finding, maybe get the LFTs checked as well...... Out goes the 'don't be bothered by it until July' plan...

Enough to make me feel a bit depressed ..... Maybe in terms of 'reactive depression' as going through DAA treatment brings up all the feelings associated with living with this bug for many years.

Many of our posts here have been in terms of fighting a 'good fight' and holding onto a new hope for a HCV free future. That's perfectly valid.

I find some of the posts recently expressing doubts and reservations about recurrence both confronting, BUT uplifting in a way as well. Uplifting in that they remind me to know my enemy - some of these new feelings and doubts are simply duplicates of the old feelings and doubts I have lived with for many years.

Hep C has f..cked with my liver, and there is always a chance it will continue to do so, but having lived with it for 20 odd years, I know when it is trying to f...k round with my head. Maybe, just maybe, these feelings I got are more in the head then the liver.

It is good to have this forum as a way people can confront the psychological warfare the bug can also indulge in.


Yours


Jeff
GT3a 1990 Failed Inter 1998, comb in 2000. HCC 2012
Started 24/52 Sof/Dac 27th October 2015.
1. Bloods 2 October 2015: AST - 165 (20-40), ALT - 265 (5-40), GGT 189 (5-50)
2, Bloods 20 November 2015: ALT etc normal; VL 19
3. Bloods 8 January 2016: AST - 40, ALT - 59, GGT 48 VL RNA UND
4. EOT 12 April 2016 - blood tests: all is well, CT scan: okay
5. AFP 11 June 2016: 4 ref< 11
6. VL July 2016: DET
7. Oct16 start treat - June17 UND
8. Jun 18, lfts okay, platelets a bit low.
The administrator has disabled public write access.
The following user(s) said Thank You: Phoenix, pat1, mgalbrai, Ariel, Gaj, Lynne-Francis-facebook, IRMA88, darbara

Feels like possible relapse - plan not panic! 5 years 7 months ago #15164

  • darbara
  • darbara's Avatar
  • Offline
  • Elite Member
  • Posts: 176
  • Thank you received: 192
  • Karma: 3
good to know I am not the only one, the last 8 days have been crap
Treatment naive
F 3/4
Genotype 1 a & b
V/L 17 MILLION
Started Harvoni 11th Dec 2015 for 12 weeks
4 weeks VL UND
6 WEEKS ALT 32, AST 34
EOT 03/03 2016 ! UND
ALT 34, AST 26
04.04.2016 SVR 4
26.05.2016 SVR 12
16.08.2016 SVR 24
The administrator has disabled public write access.
The following user(s) said Thank You: Phoenix, sabrecat, Fara

Feels like possible relapse - plan not panic! 5 years 7 months ago #15168

  • LondonGirl
  • LondonGirl's Avatar
  • Offline
  • Platinum Member
  • Posts: 1366
  • Thank you received: 2124
  • Karma: 17
Hi all - Worrying is a full-on part of having this damn thing !

You know, you worry on diagnosis,
You worry when you realise what it can do to you,
You worry about who to tell due to stigma, work etc etc
You learn...and worry.
You worry about the health of your liver,
You worry about the health of your children,
You worry about extra hepatic symptoms,
You worry about accessing treatment,
You worry when buying the meds,
You worry when waiting for the meds,
You worry about customs,
You worry about starting treatment...

*brief interlude from worry once started and you feel initially brighter*

You worry about what you eat,
You worry about what you drink,
You worry about medicine interactions,
You worry about tests results,
You worry about EOT,
You end tx ....and worry about EOT test results,
You wait and worry about relapse,
You wait and worry again.

I am starting to worry about worrying !

No wonder we are tired and anxious!
Huge pat on the back to all and wishing you a healthier and happier post worry time! #love

ps I am still on tx and have itchy dry skin.
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
Last Edit: 5 years 7 months ago by LondonGirl.
The administrator has disabled public write access.

Feels like possible relapse - plan not panic! 5 years 7 months ago #15170

  • pat1
  • pat1's Avatar
  • Offline
  • Platinum Member
  • Posts: 340
  • Thank you received: 977
  • Karma: 15
for me, I
researched Tx
acted
purchased
completed Tx
resulting in UND

and I am now
focused on positivity & transitioning back into life

I have done as much as possible to maximise a good end result with your support & advice
I am 8 weeks past EOT
casting doubt aside
with hope #flower
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
Last Edit: 5 years 7 months ago by pat1.
The administrator has disabled public write access.
The following user(s) said Thank You: Joy, Phoenix, mgalbrai, sabrecat, Ariel, Gaj, beaches, isaing4, re_roll, Fara, Sven

Feels like possible relapse - plan not panic! 5 years 7 months ago #15174

I can relate to the dry itchy skin :( I am off to have my post 12 week blood tests this morning, Nerves are setting in once again as this is the BIG one. Still have good energy levels though. The odds are on our side % wise.......Will post my results as soon as they are in. :)
Lives in Bendigo, Victoria
No prior treatment Genotype 1b Fibroscan 0 (only showed a bit of a fatty liver) Diagnosed in February 2015 Currently on my last week of treatment taking led/sof Last LFT normal
Insomnia the only side effect
Undetected at 4 weeks
SVR4 - undetected - all bloods good and GP very happy
SVR12 bloods to be done at end of April 2016
SVR12 - undetected!!!
The administrator has disabled public write access.
The following user(s) said Thank You: LondonGirl, coral, Phoenix, mgalbrai, sabrecat, Ariel, Gaj, beaches, isaing4, MtGoat, Fara, Juen

Feels like possible relapse - plan not panic! 5 years 7 months ago #15182

  • Gaj
  • Gaj's Avatar
  • Offline
  • Moderator
  • Optimist :-)
  • Posts: 1436
  • Thank you received: 3082
  • Karma: 32
I worried more before Tx when I had no plan or way forward than I do now but my current thoughts are as follows.

I do still worry from time to time and that is natural given the profound effect this virus has on all of us but for the most part I just try to get on with living to my best ability what is now a better quality of life than previously even with the occasional little niggles and doubts we have to put up with. :cheer:

I have nine days pills left and then the waiting begins again and no doubt some anxiety will come with that. But I'm concious that, as Lynne says, the odds are very much in our favour and so I will just hold the course and keep trusting in these overwhelmingly effective medications until I get my SVR results.

As for retreating......crossing that bridge is still a way off. I suspect that when the time comes if I need to cross I will, but how and when can wait until that is determined and I see what the bridge looks like.

:+1: :) :+1:
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
:cheer: :cheer: :cheer:
Last Edit: 5 years 7 months ago by Gaj.
The administrator has disabled public write access.

Feels like possible relapse - plan not panic! 5 years 7 months ago #15208

  • LondonGirl
  • LondonGirl's Avatar
  • Offline
  • Platinum Member
  • Posts: 1366
  • Thank you received: 2124
  • Karma: 17
Good luck Lynne, My good wishes go with you and everyone #love

Not long to go now Gaj :+1:

Yes, I have alot of very positive moments pat and do feel alot better, if a little 'drugged' as I'm in week 16 of tx.
My post was a little tongue in cheek, but also pointing out that the whole process is quite long and it's not surprising that we can get a little worn down by it all and just want it over. I find I wake up full of optimism but when tired at the end of the day, worry can sometimes sneak in.

A sunny day really helps, Walking in the sunshine, here in the UK, winter seems to be dragging on forever this year, snow yesterday :ohmy: Roll on spring 'proper'

Big #love to you and all .
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
Last Edit: 5 years 7 months ago by LondonGirl.
The administrator has disabled public write access.
The following user(s) said Thank You: Phoenix, pat1, mgalbrai, sabrecat, Gaj, Lynne-Francis-facebook, isaing4, MtGoat, Juen

Feels like possible relapse - plan not panic! 5 years 7 months ago #15236

  • pat1
  • pat1's Avatar
  • Offline
  • Platinum Member
  • Posts: 340
  • Thank you received: 977
  • Karma: 15
for me
sunny weather advances my feeling of well being
Spring is coming for you #flower
Autumn is with me
it seems as though you are travelling through tx ok
immensely awesome to read and know #love
gt 1a VL 6m
F2/3 FibroScan - 9KPa in 2011 and 7KPa in 2015
sof/dac 10 December for 12 weeks
pre tx alt 85 ast 51
4 wk alt 34 ast 31 UND <35
8 wk alt 29 ast 32 UND <15
12wk alt 25 ast 25 EOT 3.3.16
SVR24 UND KPa5.3 F0 in normal range
I am well
.forever grateful to fixhepc
Last Edit: 5 years 7 months ago by pat1.
The administrator has disabled public write access.
The following user(s) said Thank You: Phoenix, mgalbrai, sabrecat, Gaj, Lynne-Francis-facebook, isaing4, Matt-Kenney-google

Feels like possible relapse - plan not panic! 5 years 7 months ago #15245

  • klhilde
  • klhilde's Avatar
  • Offline
  • Elite Member
  • Posts: 253
  • Thank you received: 498
  • Karma: 6
Just to let you all know, I had the worries too.

Occasionally there would be liver area pains (mild). Different areas would feel inflamed at different times. Seemed to migrate.

I had a period of bloating, general inflammation sensations through the whole gut area ... lasted a couple weeks.

Tingles/pinprick sensations returned in my palms and feet, off and on, for a couple weeks.

Occasional tiredness came and went.

But at 12 weeks past EOT .... SVR12. I'm at almost 16 weeks now and I may have another test at 24, but maybe not ... no insurance now.

Now it's just the occasional twinges in the liver, mostly way off to the right side near where I once had a gall bladder. And that seems to be lessening as well.

My joint inflammation has never returned. My brain fog seems to have permanently lifted. My general attitude is much brighter. And while my energy levels aren't where they were during the second/third week of treatment, they are far, far higher than before treatment.
The administrator has disabled public write access.

Feels like possible relapse - plan not panic! 5 years 7 months ago #15249

  • Matt-Kenney-google
  • Matt-Kenney-google's Avatar
  • Offline
  • Platinum Member
  • Avatar-Gaelic for "Welcome"
  • Posts: 424
  • Thank you received: 1314
  • Karma: 10
Thanks LG, sorry 'bout the itchy dry skin thingy.... But don't worry too much B)
Same-same Klhilde. But doesn't sound like you're worrying too awful much, eg. the "maybe not" regarding svr24 test. ;)
GT1a; Got it some time in the 70's; Diagnosed @1976
Tx naive
METAVIR: A2-F2
SOT May 18, 2016: CMP: AST 162 ALT 241 VL 13000000
3 weeks after SOT: AST 27 ALT 31 VL 138
Reached EOT Aug. 10, 2016 / Received svr4 results Sept. 20, 2016: AST 22 ALT 24
Hep C RNA "NOT DETECTED"
AS OF 3/20/2017 ,Hep C RNA PCR "NOT DETECTED" THAT'S SVR24!
Last Edit: 5 years 7 months ago by Matt-Kenney-google. Reason: Add to comment
The administrator has disabled public write access.

Feels like possible relapse - plan not panic! 5 years 7 months ago #15354

  • Phoenix
  • Phoenix's Avatar
  • Offline
  • Senior Member
  • Posts: 72
  • Thank you received: 84
  • Karma: 2
Got LFT results yesterday. Mostly good news:

ALT 14 (0-45) Lowest I can ever remember
AST 24 (0-41) Lower than at end of treatment
T.Bili 41 (2-20)
D.Bili 13 (0-8 )

My wonderful doctor thinks that the reason my ALT and AST has gone down, but not the bilirubin, could be due to something called "Gilbert's syndrome" (just checked it on Wikipedia - Napoleon had it!) which she said is harmless. She did get me to do a viral load test though just in case (and because I'm her first HCV antiviral patient and she wants to know for sure) which I did this morning and hopefully I'll have results next Friday. It's looking promising. And my energy has also picked up back to my normal post-treatment levels, which are maybe slightly better than pre-treatment (hard to compare as the effect of a good rest from a very stressful job is also there).

Thanks to all who've posted in this amazing discussion. My whole being went Yes! Yes! Yes! reading your post about worrying LondonGirl. So true - we have so many decisions to make before and on treatment that feel enormous. The weight of the world can feel like it rests upon what to eat for breakfast. And then there's constantly tweaking levels of hope - enough to feel positive, but not so much that it sets you up for an enormous fall...

Khilde congratulations!

Pat1 love your positivity!

Sabrecat so agree much of the battle is the mind.

Darbara hang in there!

Daj thanks for your calm & balanced thoughts.

Lynne-Francis very very best of luck and prayers. Can't wait to hear your news.

And Tweakmax, you're so right, prayers always for all #love

May none of us need to count the pennies for another package from China!
The administrator has disabled public write access.
The following user(s) said Thank You: sabrecat, Ariel, Lynne-Francis-facebook, isaing4

Feels like possible relapse - plan not panic! 5 years 7 months ago #15355

  • Ariel
  • Ariel's Avatar
  • Offline
  • Platinum Member
  • Cured, SVR 24
  • Posts: 1064
  • Thank you received: 3084
  • Karma: 31
Sounds good Phoenix :) :+1:
Good luck with the rest of the results
Hugs from Ariel #flower
Gen 1a
Peg/inf/riba 2012(!) stop @ Wk 43 potassium low +issues (rlps week 4 post tx, VL120,000) scnds eg. adenomas.
pre sof/led VL 240,000 Fibsc F0
Day 25 <30
Day 32 UND
Week 10 UND
EOT UND ALT11AST17GGT19
SVR4 UND ALT10 AST16 GGT13
SVR8 UND ALT <9 AST16 GGT15
SVR12 UND ALT14 AST19 GGT12 Bili 5
EOT +18 ALT13 AST20 GGT9 Bili 5
EOT +21 ALT11AST15
Cured SVR12
Dysplasia Adenomas RemvdAug '16
SVR24 UND ALT11AST16
ColonoscopyClear Nov17
LumpectomyClear ‘18
LithotripsyCytoscopyBiopsy 4/18
The administrator has disabled public write access.
The following user(s) said Thank You: Phoenix

Feels like possible relapse - plan not panic! 5 years 7 months ago #15356

  • Phoenix
  • Phoenix's Avatar
  • Offline
  • Senior Member
  • Posts: 72
  • Thank you received: 84
  • Karma: 2
Thanks Ariel. I can feel the hugs! :)
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel

Feels like possible relapse - plan not panic! 5 years 7 months ago #15357

  • Phoenix
  • Phoenix's Avatar
  • Offline
  • Senior Member
  • Posts: 72
  • Thank you received: 84
  • Karma: 2
And really best of luck and prayers to you too Ariel. You're a real lifter-upper person :+1:
The administrator has disabled public write access.
The following user(s) said Thank You: Ariel
Time to create page: 0.128 seconds

Copyright © 2015-2020 FixHepC

Back to Top