After 19 weeks; I'm close to an emotional meltdown

[miked]

I come to this board to share  information and to learn from people very knowledgable about HCV.

Typically I'm not the type to let my guard down to anyone or anything.  It's not a macho thing, just my nature.

Over the past week I have come close to an emotional meltdown.  I'm seriously considering stopping tx.

At present I am in week 19 of Prove 3.  I know that I'm in either Group B or Group D because I'm taking Rivavirin and have went through the VX950 rash, which is now under control.

As posted before I own a business that performs business development for "clients".  The business development is y main function and cannot be delegated.  People depend on me for incomes for their families.  

I've shared with key individuals at my clients that I'm going through chemo.  However business is business because last week one major client cancelled their contact with my firm.

My son is starting varsity for his soccer team after years and years of training.  I've missed all of his games so far because the VX950 rash is sensitive to sun and heat.  Yesterday morning my entire family left for an away tournament.  I broke down when they pulled out of the driveway.

The lake, camping, fishing, vacation has all been off limits this summer.

The Interferon and Ribavrin is taking it's toll as well.  Every member of my family is getting tired of me being sick, tired and in a foul mood.

I want my life back.  Last tx about a week after stopping I started running again (been a long distance runner all my life), food tasted good, I could listen to music again, my sense of humor came back, etc.

Maybe it's the VX950 beccause it didn't get to this point last time.  Poor me, huh?

[gazebo1]

Hang in there kid, most of us have these mental meltdowns as tx goes on, and it seems amazing we pull through, but most do as you know.   I had many other medical conditions that added to the struggle, and I did 24. You can hold it together, and the end resutl is so important.  Will be pulling for you.  Regards, G

[shastri20032003]

Maybe it's easier said than done....but roll up your sleeves and fight now and think of the positives of life after treatment
Yes,,,in the short term you might miss out on a few things which matter to you now but you have to think in the long term just as you would do in  your business advise to your clients I am sure
Take care

[dmhrdh]

I totally understand how you are feeling.  I was where you are now several weeks ago.  Then to top it off my wallet was stolen at my last appt. at the University and I've had to deal with the financial and other repercussions of that.  I am working full time and it has been very difficult.  Along with seeing my own patients, I also manage the clinic.  I have had difficulty managing without becoming angry.  I also had a parent of one of my patients call and complain that I was not empathetic with her child and threatened to leave our practice.  
I also was considering dropping out a few weeks ago. The emotional turmoil, the nausea, the fatigue, the rashes, etc. have taken their toll.  I also miss my old life......but on the other hand, I want to get rid of this and put it behind me for good.  This week, if I can, I plan to hang on until the bitter end....and I have a sneaking suspicion I am in a 48 week arm :-(
On the plus side, I haven't cried for several days now!  HA!
Try to hang in there Mike!

[jmjm530]

Not sure how long each group treats, but if you did 12 weeks SOC plus Teleprevir and then Teleprevir, then 24 weeks seems to be the magic number. That means you only have five weeks left for what seems to be the optimum treatment length. I was unable to work or function on treatment so I'm amazed you're able to juggle what you've been doing. And yes, I found friends, family and biz associates jumping ship at a certain point. My prayers that this will all turn out well.

-- Jim

[jmjm530]

First sentence should have read "if you did 12 weeks of SOC plus Teleprvir and then SOC". Also, the amount of liver damage should be factored into the risk/reward equation with more damage meaning more risk for stopping early.

[willows]

I won't pretend to know how you are feeling, I could not work on my first round of tx, so I stayed on on the couch, in a blanket, watching the snow.  So you are looking up at the top of a mountain, carrying a load I could not imagine.  But I do want to tell you that I am looking up at a different mountain now and wondering if I can find the balls to make it to the top.  I failed tx the first time, liver going into beginning of stage three now and my liverhead doc has asked me to wait until 2009 for teleprevir.  So, while you remember the wonderful feeling of interferon and riba leaving your body, the return of normal life back into the brain, I gotta tell you, that when that euphoria wears off, the perspective of the next mountain to climb sucks about as bad.  Waiting is a *****.  

There was a post a while ago that helped me, the one point that stuck with me like a thistle was the issue of "did I consider myself a sick person?"....or are you one in healing?  Maybe the next time everyone takes off and you want to meltdown, find someone to stay with you?  Or find the perspective that you are not "kicked-a ss" from tx, but investing the time to heal.  

Talk about a party when you are finally done, whoa dude, rock and roll.  

[orphanedhawk]

Personally, the only way I made it through tx was be becoming a hermit. Even doing that, I had a HUGE fight with my sister, and we never fight. I broke down once at the lab when either the tech messed up or I straightened my arm and popped the needle out. I  sat there with blood flowing down my  arm, crying. That was not me!! It was the meds.

No you can't expect to function normally while on tx. You can rely on things changing. I was doing neupogen and at one point my doc upped it to 3x/week. I tried it and wanted to stop so bad, I didn't care about relapsing or anything else. I told my doc and he lowered my dosage.

Y

  

[orphanedhawk]

Damn thing just stole my post before I could finish or proofread it or anything!

If it were me, I'd try and find someone I trust to take over my position at work. Put your energy into healing. That's my advice.   Good luck                    OH

[SJL]

First of all Congrats for holding down your job, to me, this is almost unthinkable! If you haven't learned to delegate, now is the time. You say that their is no-one else who can manage your position-I say "Give it a try." You might be surprised by someone. You have gone so far to turn away now. I really don't know what your stats are, but I did all 3 interferons for a total of 102 wks., and I still have Hep C. I applaud people who are going through the trials, it is not just everyone who can or will do this.The knowledge gained from these trials will ultimately help everyone. I know these words don't help at this time, but, you are a hero in my eyes.

I have developed Cryoglobulenmia, along with Neuropathy from the Interferons. Presently they cannot give me more interferons so I am starting Rituxin therapy in Oct. I'm scared to death-but I don't want to continue feeling this way forever, and it would get worse, putting me in a wheelchair. The idea is to put the Hep C on the back burner for now, and treat the Cryo, which might help my Neuropathy.I am a 1B, grade 3,stage 4, which the Doctors say might be a 6 by now. So I have no time to wait, this is a must. Maybe if you look at your stats in this way it would help-and hopefully they are not this bad. I feel that work is an impossibility-I have been off therapy for 13 mths., and I still feel like s---. I get frustrated so easily, my temper flares, I cannot remember things, I have no energy, and the list goes on & on, like everyone else. This is why I am trying or accomplishing the Rituxin therapy. Every day brings us a new day and we never know what to expect-I have had many days like you and without my family & friends, I would have never made it. Rely on them-they will understand. Point out some articles for them to read about Hep C, or better yet, let them log into Medhelp, and the understanding should be there. Hang in Miked, even with everything going on-you are one of our Heros!
Hope you are feeling somewhat better this aft.
You will be in my thoughts and prayers,
SJL

[drofi]

Dear Miked,
interferon is well known for a on effect on the mood. From the statistics more than 25% get a depression from Tx.
You are in the VX-study, I am not sure about the comedication. Is it allowed to take SSRI?
When I took the SSRI Citalopram (or better the improved d-form from it, Cipralex), I had a better quality of life. Today I can not take SSRI, because I have low platelets.
My advice is to try an antidepressant, if this is allowed in the study.

All the best, drofi

[orleans]

Ya gotta hang in there dude. I'm on the verge of starting tx and when I have my meltdown I might need your encouragement and war stories to keep me goin'!! jerry

[Andiamo1]

I second the main theme here; don't drop out  before 24 weeks.  You are 3/4 of the way through this and you will make it the rest of the way.

I also have thoughts about dropping out - it is impossible not to.  I think Telepravir definitely makes it considerably worse.  remember why you did this in the first place and what it will mean to you and your family to reach SVR.  that is what I think about during the dark moments.  They will pass and you will make it.

[hondapatches]

Hang in there, I know how much you want your life back, I dearly want mine back also, I take a shot everynight and go to work everyday. I'm a school teacher and I feel like I just want to scream everyday. It's hard. But hold on,,,
Live, love, laugh
Patches

[susan400]

Keep on going, Mike, until you get unblinded, at least...  don't you think that you could do it that much?   I think you can.

Susan

[susan400]

Hi there Sandy.  Will you be going to lunch with us on Oct. 6th?  If not, I go to see our Dr. on Oct. 1st.  Maybe I'll run into you there?

I've been feeling pretty lousy myself, the past week or so.  Dr. J. said that since I didn't get clearance on the trial, that my numbers would probably be going back up, based on history, and all.  I felt like this pretty much after my previous treatment.  I had a few weeks of being up energy-wise and then, it all crashes again.

I'm thinking about making a patch for the Hep C quilt.  I figure, why not, it doesn't really cost much at all to buy the fabric, trace my hand and put down my info.  Mailing something of that weight wouldn't be that expensive either.  

Susan

[cigaso]

My first time on tx I worked. I had a 3 hour panic attack and decided to stop after 4 months. I called the dr a acouple days after stopping and he would not let me go back on tx. My dr was a GI and did not manage my psyche sides at all. This was in 2005 and I was und after 4 weeks. I had an excellent job and was doing well. 3 weeks after I stopped tx the company was sold and my position was eliminated. Fast forward to now, I told my GI the sx's from the Hep C were almost as bad as the sx's from the tx. He sent me to a teaching hospital and I am currently on my 19th week with a 20iu VL. If I am und by week 24, I will be looking at being on tx for 72 weeks.

The first round of tx was bad and I could not wait to get off. I hated it. There really is no way to explain how you feel. The depression and stress was almost too much to bare. I wanted my life back and my family back. I don't care how strong anyone's family is they will eventually grow tired of your illness. I have offered my wife that I go somewhere and come back when I'm off tx. I'm not working now and there is no way we could afford it anyway. Some times I feel like a leper around my own family. I saw a psychiatrist for the fist time in my life last week and he recommended I start seeing a psychologist. I'll try it if it will help me through tx without loosing my mind and my family.

The same thing that happened to jmjm and others happened to me. I have lost friendships, jobs and some family members do this disease and tx.  

Hang in there friend. You may have less time on tx than you think. You could attain SVR soon and this will be a distant memory.

[sfbaygirl]

I feel your pain. It would come and go for me, that wanting to stop, the temper, the sadness, missing my life as it was. When I was on tx I made it my job, no matter what I wanted this bug outta me! Regardless of all the horrible sx, losing friends and not able to do much of anything, was really hard and depressing. Thankfully my husband was great. I can't imagine working with patients or kids, I probably would have bitten their heads off. Now that I am off tx, I felt better for a while, but I wish I could have finished my 72 weeks of tx, instead of stopping at 47 weeks. I relapsed and now am thinking about having to go through the whole horror again at some point. Hang in there. It seemed to me that some days were good ones and I looked forward to those and the bad days do end for a while anyway. Good luck and hang in there dude, you can do it. As we used to say, do it like the little train that could. Sometimes you have to go a minute at a time.

[web52-1]

hang in there! i know where youre coming from. i finished up prove 1 and am now 8 weeks post (i was in the 48 week group).  the tx is rough. try to take it 1 day at a time.

[cruelworld]

do anything you can to get more rest time. you are compromising your treatment
if you grind yourself down to vegetabalized madness. in previous posts you mentioned your high stress job and family burdens. i just assumed you were one of the few who had light tx sides. dont risk your treatment for money,  you will regret it. you are on the way out of this mess and your body can only take so much. i couldnt begin to do what you are doing!  i can only work once every six weeks and im spending savings to take it easy and give myself a chance to get healed.
depression, anger, anxiety, and exhaustion dont spell SVR.
give it a rest warrior, the worst is over.

[Terrylee8]

I'm 18 weeks in and not working and 40 mgs of Prozac has kept me in the game. I don't know how you can work on tx.  This tx is harsh and we need to do what ever it takes to make it.  A leave of absence may be in order.

[susan400]

As all of you know, I've been doing treatments on and off for years.  At first, the first part of it, I was working part-time, or at home.  But, eventually I couldn't even deal with the stress from that.  I couldn't stay on task, remember things, basically 'get the job done', so after 3 years of trying to get it, I was awarded Soc. Sec. Dis.  It wasn't based just on the Hep C, but on the problems with my ability to function as in mentally in a job situation.  I am definitely not rich by being on disability.  Anyone who thinks that someone on disability has it made by living on taxpayor dollars, has never tried to live on disability.  I don't know of a lot of people that can make ends meet in this day and age on 12,000 a year.  I'm sure that there are some who can, but I'm not one of them.  If it wasn't for my husband's working and for my parents help, I wouldn't be able to afford to keep a roof over my head and pay utilities and eat on that kind of money.  Anyhow, I can totally see how it's a hard decision to make.  It's hard to work while treating, but it's also hard to live without the income.  I feel for you Mike.

Susan

[wyntre9]

Hi Mike,

As you see, you're not alone!

Just to add to the narrative, I'm on week 38 of 72.  I haven't worked since starting TX. nor could I.  I started getting very stressed around week 16.  The problems prior to that I'd tried to handle with weekly therapy (first time in my life).  But when the anxiety, rage and total-out-of-control behavior became too overwhelming which, interestingy, coincided with selling my house and downsizing to a tiny place, I went on prozac,

that did help me through the next 4 or 5 months.  in fact, i don't think i would have survived the move, the movers, the attorneys, the realtors, the buyer, the details the packing up of 14 years if i hadn't been on an AD.

Now that I'm finally (almost) settled, after 9 months, I'm weaning myself off the prozac.

The emotional SX are very real.  If you can't get more down time for yourself or some relief from your high-stress life, an AD might hlp.

BTW, like Orphan Hawke and a couple of others here, I've become a virtual recluse on TX.  It's just too difficult dealing with, much less explaining to others what I'm going through.

Best of luck, Mike.

Wyntre

[Teufelhunden]

I hit the wall around week 28. I was ready to throw everything away. It's not about being macho or tough. What we go through would topple the strongest person. 25 years in the Marine Corps, battle hardened, war weary, leather skinned, the meanest SOB you'd ever meet...and I cried when they played "You Don't Send Me Flowers" on the radio my sixth week. Yeah, it's not a cakewalk. The things I had to put on hold while going through treatment was difficult as well. But now three months post tx and I'm making up for lost time. Those things that you've missed will come around again and like last time, you'll rebound back and pick up where you left off. Hang in there. Best of luck!

[geterdone]

Hang in there, you can do it. Don't throw in the towel this close, some things may suffer but its better to finish now and be done with cuz if you don't your looking at another 48/72 of the STD, soc. No magic wands will stop the incurring damage or take it away.
Hell, your original post was an inspiration to me.
jasper