Week 8: Wow.. can this suck worse?

[HippyHal]

Week 7 went south, and week 8 has the glide path of an unpowered 747..  Itch, constant cough, constipation, belly swollen, up almost 15 pounds, little sleep, no energy, no nothing! dry mouth no matter how much water you drink, dont want to eat anything..  even cereal in the am is too "dry".  Force feeding this 20 grams of fat is getting to be like walking to the gallows, even opening that little blister pak of purple pills is starting to **** me off!  :)

Ok.. off the rant.. my bad :)  Week 8 started Friday with another 90 of interferon since platelets are running around mid 40's.  HGB is 10.6 and steady.. both red and white blood cell counts are down.. but as the Dr. puts it.. you are bumping along.. take another 90!

My last month supply of incivek showed up on the doorstep yesterday..  Hopefully, it is as saturated in my body as it can get and can get no worse!  I cannot wait these last 30 days or so to hopefully NEVER open another incivek blister pak...  

Thank God I have my wife and friends, not to mention an understanding boss that is giving me the support and air cover I need to get through this without worrying about too much other stuff!  I am (rant aside) truly blessed.

Cheers!

[micheall]

I read in a earlier post the tx can create a bacteria in your mouth from dry mouth.He or she recommends eating yogurt every other day.Now I am a yogurt eater.It seems to neutralize the bacteria.

[BigDaddy_59]

Glad to see your platelets are hanging in there as well as some of your sense of humor!

I am lucky that my boss (and everyone else) already knows about my 'disease' and they are pretty cool about it. Of course I am known for giving TMI and I educate them as well. I leave out the burning shards of glass part (mostly).

They put me on another 10 day wait due to a diverticulitis attack. My hepa thinks I may have an intestinal infection because of the diarrhea even though I know it's from the antibiotics. But better safe than sorry plus she always goes to bat for me against the bean counters like she had to to get my Promacta OK'd.

Hang in there Hipster, you are on the downside!!! and SVR is just down the road.

Peace Out,
Chris

[leebambee]

Hang in there...although I'm on vic instead I can relate. Tired if the alarms, they almost get me really mad, which is crazy to feel so much loathing for an inanimate object. Reminds me of you love for the purple packs.
It'll be a while before we get excited to get a package in the mail again!
  Feel good (or better at least)

[HippyHal]

Thanks for the good wishes, it is always good to be reminded that no matter how bad you think you have it, some one else is struggling with worse. Or, consider the 17,000 that died from this disease last year alone.

When this is over, and I have a little more energy, I believe it is time to take the "dirty little secret" wraps off HCV and become active in encouraging my fellow boomers to get tested for this disease. Heck, it took me a month to tell my boss.  It is certainly time to let the facts be known, quit worrying "how" you may have gotten it, and take active steps to treat and cure it!

[his3707]

I didnt end up in the hospital (yet) so yes, it can always get worse, but it will get better,  Im in week 41 of 48.  Just hang on!  you can do it!  You have a good sense of humor so it will take you a long way on this journey!  

[slideman]

Dont forget the water!! I know how old that gets, but it gets older faster without it!! I felt better when I would eat snaky things (without fat...I did eat the required amount faithfully) throughout the day. My nausea was constant, but worse on an empty stomach. Its a little different for us all, but we all agree...IT *****. When I read the new posts it sure brings about memories. I do my first post vl test in a week, sure would like to see UND!! But if not...I'll fight it again.

[crossroadsec]

Ditto. Week 33- bleeding gums, cracked fingers, up w itch unless I take ambien. Elephant on my chest. Biotene works n I tried everything. Balneol cream did too for bottom. Has ur dr mentioned Promacta? I got up to 61 n now take it every other day.
Maybe no comfort in this: you're going down a much traveled road. I think ranting is part of the path to success. Hang in there!
About hair... Shedding is getting less. And I'm even wearing my wig for my evaluation at work tomorrow. Don't like it... But it works.
This ALL too shall pass.
Tired n whiney,
Karen :)

[rivll]

I have so much admiration for you all and the strength you have to go through this. I am waiting to start the "roll over"" in 3 weeks, I will begin Riba and the new (formerly PSI ) Gilead oral. I am not on anything but since the virus returned, so have the symptoms-not as horrendous as what you are experiencing, but intense itching, bleeding, swollen belly, sores and fatigue. If I didn't know that the rollover would do it and if I hadn't had those few days of euphoric health (No symptoms whatsoever) I don't think I would have much fight left. Bless you all, you give this wimp a spark of courage just reading the rants.

[TexSunflwr]

I meant "there" not "their". Doh...brain fog!

[TexSunflwr]

Hang in their, buddy! You're not alone!

[mykids247]

everytime I do my hair i feel like I just groomed a golden retreiver. Then I think after I get really sad and and really mad ( l loved my hair)! that its better to lose a few million hairs and live a long and healthy life. I hope that can take me through the next four weeks. Hope this stuff works. Getting very difficult as the end gets closer, so afraid of relapse......at my age that wouldnt be good. But I have been und since week four so...........stay the course  :) fingers crossed and many prayers. Anyone know how long the shedding lasts after treatment stops?

[brianmo]

Hair everywhere is a good way to put it! It's driving me nuts. Even when I sit with morning coffee that still taste like metal but I drink it anyway, I can see pieces of hair in cup. Now I am so paranoid about hair in food.  Besides for the itching this is the worse.  I brought my first wig! It's adorable but have no courage to wear it out.....baby steps.

[JasmineT]

Hi Hal, I am two weeks off tx so 14 weeks off incivek and still can't eat fat. :-P

For the dry mouth, You may also try some vitamin zero water or gaterade.  Getting some electrolytes and the citrus flavor seemed to help me a little.

On incivek, I would think it was all downhill and then I would get a bit better for no reason I could see.  As the plane nears the ground you may ride some minor updrafts here and here.   Hang in there, relief is coming!

[Advocate1955]

The blister pack of purple pills is intensely annoying, very difficult to open.
Advocate1955

[orphanedhawk]

Oh no, never ask that.
It can always be worse, and, it can always be better:)

There's one member who posted not long ago. He was put on  90mg interferon yet was und @4 weeks.  

My rant of the moment is minor but annoying, hair, hair everywhere. I can't wash a dish without picking hairs out of the sponge. My hair is shedding quicker than a cheap stripper with a hot rich date.

[libzo2]

Your rant sounds like my last internet date.  Are you Ramon?  Just kidding.  Rant on my good man.  It fillls our bellows here.  Aye the fire is rising, the fervor of virons evaporating.  haha

[alb572]

Too bad you having a hard time, but hang in there-it will be over soon (it is week 9 for me). Yeah those "fatty pills" suck:) By the way, have you tried Biotene mouth wash--it helped me a lot with dry mouth, especially during the night.

[micheall]

I was on that plane to.I had ,jump off at week 11.I got anaphylaxis,red rash head to foot,blood pressure 71/40,weak kidneys.I needed 3 units of blood in  ICU at the hospital.They gave me an IV for anti-biotics for weak kidneys and the red rash .For the itch I got benedryl in my IV.Didn't work on the itch.Couldn't sleep.I went home to take care of myself after 3 days in hospital.I couldn't sleep  for the next 2 days.Used everything for the itch.Got online back to Medhelp to read up .One member said no hot showers for the rash.I thought about this and tried the opposite.I iced my body down.The itch in my legs went away.The rest of my body for a few hours at a time.Is a rep calling you once a week from Vertex that makes Incevek and asking questions about your treatment on Incevek?They helped me a lot.Told me the meds for the rash and itch.I am on my 6th day of rash treatment.The itch pills helped a little till I got the idea for the ice.I treat my anal problem everyday with non-alcoholic wipes and Pramosone cream.This keeps the glass shards under control.I use a chin strap at night to keep my mouth closed.A little awkward but I get 8 hours of sleep.Hope this helps.Side effects are annoying.

[stormy456]

This does not sound like fun - I will say that husband's side effects were at their worst weeks 8-10, then somehow got much better week 11.  Today is last day of INC, and he couldn't be happier not to have to eat that darn 20g of fat.  Hang in there, friend.  You're almost there, by all accounts things get much better post INC, and you're only a few weeks away.

[working dog]

i had such bad sx too...the good thing is when i stopped the incivek the feeling of being hit in the head by a heavy weight stopped..most of tx it took me about 20 minutes to stand up out of bed..putting socks on was a real project..after the incivek mentally i felt much better but the anemia wouldn't get better......i'll bet you clear this virus.....good luck hal.....billy

[crigger]

Yes It can get worse!! Week 11/12 ... then it gets a little better. I am on wk 17 the rash is gone.... burning butt is gone.... over all things are better Hbg is way down and I have a difficult time breathing.. still things are much much better without incirvek

[gene53]

Hi Hippy,
I'm so close behind you. Starting wk8 tomorrow. Feel almost identical. No constipation yet. The Itch is a bit** driving me crazy at times.
Never in a million years did I think I could get burnt out on choc. doughnuts or Klondike bars.
Like you though I do feel blessed and lucky, for the support of my wife, family, and friends. also that I have read so many other people here having a worse go of it.  2/3 done with the Incivek keeps me going.
also I keep in mind what our brother warrior Hector is going through as we speak today, another round of Chemo on top of ESLD issues.
We can do it!!!!

Susan: I think we are all on the same plane, whens the next movie start???
Good Luck Hal, Susan, everyone else, and especially Hector
Gene

[LookingForward12]

I had to laugh too at your description! Thanks for that! I feel like I must be a couple of rows behind you on that 747! Mercy. Every day brings a new side effect. My hair is like straw, my face is pasty with sores ( I look a little like a meth addict -eek!), rash, the interior of my nose is like a scabby, bloody wasteland, if I never see a purple pill again it will be too soon. How can one come to hate ice cream so quickly??? I wake up in the morning with my tongue stuck to the roof of my mouth and feeling like a dry sponge. You're right - no amount of water in the world can touch this! (I have learned that cold, ice water goes down much better than room temp water, however).
I'm glad you are two weeks ahead of me....you give me so much to look forward to LOL.  Hang In there and we'll beat this together. I'll need you over the finish line first so that you can  here me on at the end!

Cheers.
Susan

[FrontRangeMom]

My worst week was the last week of incivek (week 14). I also had the swollen belly. it was miserable. Doctor drained over 3 liters of fluid - it was only mildly uncomfortable to have it done, and it REALLY made me much more comfortable. They gave me diuretics and only a minimal amount of fluid returned.

I'd suggest you take to the doctor about the fluid. It could be Ascites due to liver damage from the treatment.