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Post Info TOPIC: a bump got over
EasternOntarioGirl


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RE: a bump got over
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Hello Catie and Greg.

As I read you post I can identify quite abit. David has finished wk 7 of Pega/Riba and wk 2 of Victrelis. David as well is a ridiculously nice guy with alot of good friends. When he was told he had to have a transplant as cancer had appeared, a good friend (angel Corinna) donated hers and everyone had a benefit for us (700 people, $7000) which was incredibly humbling. His boss has told him 2-24-48 whatever it takes. So he is well, well liked (except by me right now). lol hmm We have always been able to deal with whatever comes our way but this has challenged us to the core and the road looks very long today.

I did try to talk to him about ADs (I know about them as I got depression at his transplant time) but he says 35 toxic drugs is enough! I will try again g-e-n-t-l-y after talking to his nurse practioner. She told us their job is to watch his blood and numbers, his was to take his meds correctly and mine was to watch his mood. I had to be told that I had depression because I didn't see it at the time.

So as someone said, this illness effects the whole family. Take care of yourself Catie and keep yourself up there at the top of the list. Greg, I hope you start to believe all of the people here as they are the experts in getting through this. When you are virus free it will be easy to be done with the AD and gather up your life with Catie and away you go.smile

All our best to you both.

Trudy & David




__________________

Living donor transplant 2008, geno 1, May 2012 Pegatron/Ribavirin June 2012 Victrelis

VL at start 5,970,000, 5 wks 40,000.

"Remember that fear of the future means it is not happening now!"
elizabeth


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Thanks, Kiwi.  Anything is worth a try.  I may have to grind the pills up in his Ensure to get him to take it though! LOL  He's normally very easy-going, but he is stubborn.

Take care of yourself!



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elizabeth


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Catie & Greg and everyone else -- thanks for sharing your very private stories.  My husband, just finishing week 5, has been having some serious anger issues which seem to be getting worse.  He's been prescribed AD's but he took one pill and  it knocked him out (most things do) so he won't take any more.  Doc changed the rx to a different AD and it was the same thing -- took one pill, knocked him out and he won't take any more.  I've tried to explain that maybe he will get used to it and be able to stay awake if he takes it longer but it's like talking to a wall.  I know he feels horrible and I know this isn't really "him" but if he won't help himself I don't know wth to do.  I'm about ready to take Greg's pillow and............................. no



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kiwi


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hey there. i got put on ADs before treatment started. reluctantly. for the first few nights i took them, they knocked me out.. now my body is obviously used to them. i switched from night to morning too, coz of sleepless issues..

ive had some severe anger outbursts and i consider myself pretty mellow and easy going most of the time, but recently i have no tolerance for idiots (lol) and have been expressing this...

oh and also yeh, other people notice my changes in behaviour more than i do... thankfully i have good friends to keep me in check, and check up on me, i live alone and arent exactly taking the best care of myself at times..

good luck. i hope he finds a med that works... this is such a hard part of treatment coz you cant see it...

MAYBE IF HE TAKES IT AT NIGHT, AND GETS A GOOD NIGHTS SLEEP AS A RESULT... worth a try eh..

 



-- Edited by kiwi on Monday 14th of May 2012 04:46:45 AM

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kiwi. genotype 1. started pegasus and riba on 10 nov. VL 17.6 million. (4 weeks VL 1368)  week 15 UNDETECTED... :)
Catie


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Hiya BJ =)

Can i ask what the other supplement that you found is? sustagen only has vanilla or chocolate - Greg hates vanilla and is mighty sick of the chocolate - sustagen does other flavours but they are in things like puddings ... sound eww for anyone who doesn't really want to eat and i'm not going to inflict them on him

I love the picture you use for your av - was it a moment that has really stuck in your mind as special? scuse me if that an intrusive question and np if no answer

cheer - Cate =)

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Gene Kranz, Apollo program flight director said,

FAILURE IS NOT AN OPTION!

Sounds good to me ...
BJ


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Gidday Catie and Greg,

This is going to be a tough time for both of you, and just because your not on meds doesn't mean you are not susceptible to a lot of what Greg goes through, Catie.  Greg, I made a lot of mistakes early in tx that could have been avoided, and I guess I'm just concerned that the powerful interferon won't be as understanding, if you don't fully undertsnad this drug and it's sx.  I know, any dumb **** can read a warning notice etc; it's just that it won't tell you about what's happening to YOU, it's all about what he stats say might be the average experience.  My experience wasn't average, and it sounds like yours might not be either.

Good luck to you both, and on the hospital-grade Sustagen, I found commercial products far superior to the HG Sustagen, but the stuff is expensive and milk taken with it can cause problems later on in tx around shot times.

Best of luck to you both and hang in there guys, I put Margie through hell and have a lot to make up for.  Make sure you look after yourself as well Catie.

Cheers,

Brendan.

__________________

Geno 1b 72wk tx (Sept '09- Feb '11) Tx sucks, Sx's suck, but no one quits on my watch.   Pre-tx VL - 7.6 Million - Wk 4 - 480,000 - Wk 12 - 19,000....Wks 24, 36, 48 and 72 PCRs were all - negative :-))))Achieved SVR August 2011 

Minerva


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Hiya Beth,

I can totally relate to your explanation.  I always referred to tx as an 'emotional rollercoaster' and i too ended up analysing several events that had happened in my life.  It felt a bit like cleaning out the mental cobwebs...and it was pretty mental sometimes!! biggrin I was also prone to laughing at the most inappropriate things, and crying at tv adverts!!! confuse

Hiya Greg,

I think one point that we are perhaps trying to get across, (but hopefully not overdoing it!!) is that it is often other people who notice changes in their partner/friend/parent, etc.  It is sometimes very difficult when on tx to remain objective and our behaviour can seem 'normal' to us, when to observers we are acting out of character.  I think this is worth baring in mind, just in case you find yourselves in a similar position.

Hope everyone has a good, side-free, weekend!!
Hugs
Heather
xxx   



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Finished TX 2005. Geno 3. Achieved SVR - Heather.

When You Are Up To Your Neck In It - Keep Your Chin Up!!

'Knowledge. Is knowing that a tomato is a fruit. Wisdom is not using it in a fruit salad'. My dad. X.
bethland


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Hi Catie and Greg
i hope i didnt come down to hard on this thread..hmmm i guess it pushed a few buttons for me.
As i had such a difficult time with my head on tx.I didnt really experience rage tho i had paranoia, hyper vigilance, angst over every little piece of my past and i did look at my sisters cat one day and wanted to strangle it..for no reason.
sorry i know that sounds rough but its true...lol (now )....

so this wanting to harm thing is not good..
love ya's
keep up the fight
elizabethheart.gif

p.s
dont worry the cat survived , i like cats .....

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48 wks tx..23 feb 2010..vl 7 million/no scarring/Genotype 1
Detected@wk12(15 copies)UND@wk24UND@wk36..UND@wk48..Finished tx Jan 18th 2011..SVR JULY 2011

from the dark end of the street.........to the bright side of the road............
ty


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Hi Greg and Catie,  I'm sorry to hear about the problems on tx, it's our wonderful life with sx, LOL.  If I were you I guess I would just quantify my feelings on paper.  How many times was I feeling rage or depression in a day?  Did the number go up in a week?  In my case I was feeling mad for no logical reason, similiar to James' example. 
     I waited too long to decide that it wasn't normal thinking from just feeling crummy, or me just being a grumpy old man, but an actual mental reaction to the tx.  The management of sx are the biggest issues to deal with during treatment and dealing with them doesn't mean I'm a wimp, it means I am taking every proactive step that I can take to beat this virus. 
     It takes a few weeks for the AD's to kick in, and I wish I had started them a few weeks before I felt I HAD to have them.  Oh well that's just me...  All the best, tysmile



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Genotype 2 - 24 week Tx - Start 10-8-2010 - 4 week PCR test UND, 12 week PCR test UND, 24 week PCR UND,  SVR Oct. 11 
Fnzol


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I will not hesitate to call my Dr if I feel the need to have anti depressants.

Consider that you might not be the best judge of that.

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Greg


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Hi Everyone,
Many thanks for your advice and concern, I do understand what you all are saying, and I will not hesitate to call my Dr if I feel the need to have anti depressants.

Appreciate your concerns.
Love to you all
Greg

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The mind is like a parachute it works best when it is open. "The Dalai Lama" My blog: http://greghcv.wordpress.com/
Genotype 1a, started tx 1st Feb 2011, for 48 wks. Week 24 PCR 26/07/11 Non-Responder
New TX start date 12th Sept 2016 Harvoni x24 weeks.  VL 7.4 Mil. Week 4 "Undetected"
Catie


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thank you all as always your your storm of comment and advice - it's very welcome and noted as coming from a postition of experience smile

perhaps I should clarify that it was Greg's decision not to have anti depressants at the moment - Stephen (GP) is quite open to prescribing them if Greg feels the need

Greg is open to the idea as well so it's not a 'no no' - not even a last resort - it's just a 'not yet' smile

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Gene Kranz, Apollo program flight director said,

FAILURE IS NOT AN OPTION!

Sounds good to me ...
Minerva


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Hiya Cate,

I think it is really brave of both yourself and Greg to share your experiences and i am sure it will also help others.

I agree that when it comes to tx and taking anti-d's, sooner is better than later.  If anything i would have thought your dr would want to start them sooner so that Greg can have the benefit quicker.  That's not to say your dr is not a good dr, just that experience seems to suggest that waiting is not the best way to deal with this.  

In other circumstances in life, i think that the wait and see approach with anti-d's might be more helpful, but with tx i also think that anything that will make it easier is a bonus.  There can be the concern of getting off any meds post-tx, but i personally think that whatever helps you to get thru it, and then work on getting off any meds afterwards. 

I think that when people say things improve with time, that what really happens is that we learn to adjust more to the sides, and not necessarily that they go away.  Although some do come and go throughout.

You are both doing brilliantly, in what is not an easy time.
Hugs
Heather
xxx

__________________

Finished TX 2005. Geno 3. Achieved SVR - Heather.

When You Are Up To Your Neck In It - Keep Your Chin Up!!

'Knowledge. Is knowing that a tomato is a fruit. Wisdom is not using it in a fruit salad'. My dad. X.
Cinnamon Girl


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Hi Catie, I really admire your determination to support and understand what`s going on with Greg through this.  Unfortunately this tx comes with some very nasty sides, they warn you about the risk of depression but not this rage that a lot of us get out of the blue.  Yes, I agree what the others have said - he needs ADs now!!  I`m normally quite a placid person but there have been times when I`ve turned into a bad-tempered old cow during this tx.  I reduced a local builder to tears a couple of months back over some work he hadn`t finished for me ( he did deserve it though!).  Once I started shouting I just couldn`t stop.   My brother commented that he`d never even known me to loose my temper before.

This is typical of the`Riba Rage` that suddenly comes over you and it`s actually quite scary to feel out of control like that.  I found that ADs haven`t completely solved the problem but my goodness they help such a lot.  I`ve found that relaaxation techniques can be very helpful too.  I started off on a low dose so that it would leave me a boost to have later in tx - which I found I needed too. Like most of us , I`ll worry about coming off when all this is completely over.

Take care both of you, you are strong and will get through this.  With a little help from your friends.

Good luck, you`re going to have to badger your doc I`m afraid.

All my best wishes,love from Jill xxx

 

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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
greenqueen


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Hiya Catie,

Elizabeth is absolutely right - Greg needs AD's asap!

The meds gradually build up in the system and for many people it's around the 8 - 12 week period when it can get really difficult. You obviously have a very good relationship with your Doc, but to say that "things improve with time" is not what most people experience with regard to the mental sides of the drugs. Interferon is well known for causing an imbalance in the brain's serotonin levels, so the AD's help level this out. Citalopram is an AD that works very well with the tx and many treatment centres even recommend that people start taking AD's about 6 weeks before starting tx.

I can understand the not wanting to add anymore toxins to the mix, but these are very powerful drugs and it's a case of whatever makes the journey easier, both for Greg and yourself.

Rational thinking can go right out the window and even the most calm and reasonable people can end up doing and saying things that are totally out of character.

I've heard of situations where someone's smashed the house up and even become violent due to these meds. This isn't meant to scare you, but it's important to address this asap.

Love Steff xx

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Geno 3a. 24 wks tx 20/10/05 - 06/04/06. Achieved SVR.
bethland


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hi Catie
you sure do try hard and did all the right things in dealing with the situation with Greg.
I cant believe that doctor didnt put Greg straight on AD'S.
Its early on in tx and he has a long way to go....BTW doctors always say it ets easier ..and where do they get that info from, the drug company...
Has the doc ever been on interferon and ribo's ?
of course its more drugs for the body to deal with but Greg want get through his tx like that..AD'S make it more comfortable and the last thing Greg needs is to feel bad about himself , thats to much for the body to deal with.
I feel almost angry about hearing this as i was told all the same stuff and was in an absolute state by week 24 because of the people telling me i was ok and afterall they had all those symptoms as well (but they were not even on the meds )
no one would take it seriously.

make it easier for yourself
Greg go on the AD'S ..i did and i wouldnt have made it t week 48 without them..

i hope i am making sense Catie and congrats on being so supportive ...xxxheart.gif
elizabeth




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48 wks tx..23 feb 2010..vl 7 million/no scarring/Genotype 1
Detected@wk12(15 copies)UND@wk24UND@wk36..UND@wk48..Finished tx Jan 18th 2011..SVR JULY 2011

from the dark end of the street.........to the bright side of the road............
James10500


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Pretty cool to be so understanding. I had to make Leila read the side effects several times and I still don't think she believes Riba Rage is a sx. I remember my first episode was whether Katie Couric (CBS evening news anchor) was a credible journalist or not. I just couldn't let it go that she wouldn't agree with me that she sucked....lol. Today I could absolutely care less if she agrees with me or not. Everyone is entitled to their own opinion. But it happens the drugs mess with your head BIG TIME ! The next episode was a little more serious, nothing physical but nasty. So I got some ADs they seemed to allow me to blow a lot of stuff off, that was about a month into it.

As Ty says the tx seem to rip your soul right out of you. People just are not themselves.

Take care,

James

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Diagnosed 4/13/10; Started Tx 8/13/10; SVR 7/27/11
Catie


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this post is a very personal one -  Greg and I have found it so helpful to read other people sharing of their experiences - recognizing things others say as relevant to us - so we am going to share this one

Greg is a cheerful happy person who whistles and hums through his days

We had a difficult day on Tuesday - it was unpleasent but a good part of the learning curve that is this treatment

Greg lost it in a fairly impressive way - threatened me with a pillow - and yes it does sound funny but it wasn't for him and it was sad an horrible to watch

Just to be clear - he just isn't a scary person so I didn't feel threatened at any time

The dear man really wanted to hurt me - yes with a pillow - but I could see only too well how very distressed he was in that moment and it was truly awful =\ he was frightened by the violence he felt

I had half a day at Uni on Tuesday and came home to a frowning and angry person who determindly took everything I said as an insult and major big deal - I realised he was not himself and tried to keep my voice calm - tried changing subjects - tried offering ideas but it all just made him angrier - I even tried walking away but he followed me - and my diplomacy switch was must have been off because I just made it worse and ended up being angry myself

He spiraled into a fury and aimed it at me which is fine as I can cope and look after myself - however the strength of the anger he felt scared him badly - especially as he wanted to harm me - "smash you with the pillow and really hurt you"

I walked away again when he began ferociously beating up on the pillow so I shut the door and left him to it - he came out a couple of times for a good shout

And yes it did upset me - mainly becuase I couldn't help and just had to wait ...

Eventually he did a sensible thing and called the clinic nurse and in a confused way (yep I was eve's dropping) tried to tell her what had happened - she was obvioulsy very concerned and contacted both his docs and made appointments for him asap

Then he came and sat with me and we talked - he was mortified, still angry, frustrated, confused and ill but he let me hold him and comfort him and he had a good cry - he told me what had scared him (that he wanted to hurt me) - I told him I didn't think a pillow would do me much damage - and reminded him that he had not acted on the impulse so he was not as out of control as he thought

Greg felt much better the next day and as if he had created a storm in a teacup - but on the principle of all knowledge is good - we trotted off to see our fantastic GP Stephen - Greg said he wanted me to go in with him and we all had a good chat - really productive and especially reassureing for Greg

Stephen pointed out that wanting to scream and break things  as realy profoundly normal for someone suffering headache, nausea, joint and muscle aches, exhaustion and so on etc for weeks at a time - he almost said 'duh'

he also said there may well be a reaction to the medication fiddling around with Greg's 'normal' brian chemicals but at this stage he would not offer anti depessants - his reasoning made sense - they take two weeks to kick in and as the nature of the treatment is that 'things improve' with time they may well be unnessesary by the time they take effect - they have side effects of their own which can be very unpleasent - are more toxins in a body that is already struggling with some really nasty things - and there is the difficultiy of coming off them at the end of treatment - he didn't rule them out - just didn't think Greg needed them now

he did however suggest that on days of particular stress Greg use somehting like valium to help him feel more calm although having a good shout would do no harm but might alarm the neighbours

he also suggested a really good idea with regard to 'defusing' - we have an agreed phrase that either of us can use if we feel a vigourous discussion is getting out of hand - a good and safe idea mainly for Greg to use so he can feel he has more control - but for me too as an 'objective' observer of his behaviour - it was very obviouse to me on Tuesday that he had no idea how to stop - will be interesting to see how this works

such a long post - congratulations to anyone who gets to the end of it - if anyone reached the end

cheers - Cate and Greg

PS - the sustagen hospital grade is fantastic asorbable nutritian and for keeping weight on whe you just cant eat - and to make it more palletable put icecream in it

PPS - the pillow is still intact

__________________

Gene Kranz, Apollo program flight director said,

FAILURE IS NOT AN OPTION!

Sounds good to me ...
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