falling apart at the end

I'm just wondering if any others here found that they fell apart more and more towards the end of treatment.  I believe I only have about four more shots to go.  I have developed acute exzyema?  According to my primary doc this is a reaction to the meds.  Also my hair, after loosing more than 2/3, is now starting to break in several different layers.  My platelets last blood work was down to  47,000.  At least the GI and I agree that we're not really going to concern ourselves about this, since we're so late in the game.  Like I said, just wondering.  Thanks Robin

[layla]

Yes the end was very difficult. I did 71 weeks vs 72 because I just couldn't do the last one. That week I developed PN and the doc said just stop now and he did not have to say it twice. My hair kept falling out for about 4 months after finishing tx but it did go back to normal. I also had thyroid problems so that may have added to may problems. Hang in there it's almost over. Sorry you are feeling so bad. LL

[doll face]

I too felt like I was just falling apart at the end. That last month was the hardest , it seemed like the every ache and pain were intensified. I developed thyroid issues early on in the second round of tx, so some of sides might have been from that also. You only have a few short weeks left honey so hang in there. Life does get better. When you do finish though, don't try to over do anything right away. That is a mistake many of us make. Let your body heal for a while. Good luck.

[mikesimon]

I don't know why it is that things seem to get worse at the end of tx. I found that to be the case and it was independent on the length of treatment. I did 2 courses of 1 year tx and I deteriorated towards the end of the year both times. Then I decided to do 72 weeks and around week 68 I started to feel really lousy. I don't know if there is a psychological component to it but it always went that way for me. Good luck and hang in there. Mike

[cuteus]

I think it was mostly psychological in my case, the drag on crappy feeling was exhausting mentally and the longer it went the more tire I got.  Much like labor pains, I just wanted that baby out, after 52 hrs of labor...
you almost done, you have one week left today, then next week is only one week left, switch to 1/1 instead of the 3/4 mode, it might help.

[cigaso]

I felt like that my first 2 weeks. I'll do my 4th shot tomorrow night. It doesn't seem so bad now. Man, do I have a long way to go. This sucks. I can't imagine doing this for 1 or 2 more 48 weeks or 72 weeks. I'm a 1b, so I might be looking at it. Some of you folks are just amazing!!!

[bon_vivant]

Haaa, Haaaa......

I see I am NOT THE ONLY ONE that compares TX to Child birth....

LMAO.... That was cool we posted at the same time!
:)

[cuteus]

great minds think alike!!
funny!

[Califia]

It just grinds on and on, doesn't it?    For me, with 5 shots left/48,  the mental blahs are probably the worst part...but duh, I have mental blahs because of waking up every morning feeling like THIS.    For some reason low grade fever and muscle and ligament ache has hit really hard at this stage of the game, and I am never without headache, no matter what I do.   I feel like my body is running wild with electricity, and my feet buzz and throb non-stop.   I'm just holding on and gritting my teeth...but I've also stepped up on the stretching.   It's already made a difference between excruciating and tolerable....but still, geesh.   Hang on, Robin, and get yourself some pampering, whatever appeals to you.   You've earned it the hard way.

[KICKED]

I find it getting hard as the weeks past to give myself my injection.  I just do not want to do it.  I still have  3 months to go and I hope I hang in there.  My husband finished this week and will go for his 1st test.  He is geno type 2 so they just check his counts only.  Good luck cause I know I will need it. I wasn't so lucky I am 1b.
Gina

[bon_vivant]

Hey Sweetie,

I remember when you were first starting... Hang in there... you are so close.

I fell apart physically & emotionally.. I'll admit it now, (but wouldn't then) I had a complete meltdown toward the end last round... it was the most profound thing I have ever experienced!

My family was more concerned about me, & my basic quality of life during that time, than they ever had been previously.... (to the extent that they were all against my re-treating)

I was out of character, & psychologically drained.. & I KNEW it... but I tried to be a trooper, & "fight / deny" it all the way (as that just wasn't acceptable to me) when it got to the point that I couldn't even muster up any more self esteem, I did my final shot 4 days early.. (Talk about an interferon BLOW OUT... whoa) Might I strongly suggest that NOBODY EVER DO THAT!

Try to take it easy, & pamper yourself...
I know this is easier said than done

[rsterling]

Thanks all for your thoughts.  Always feel better knowing someone else KNOWS what we're going through.  Which of course is why I come here.  Thanks Again, Robin

[honey1616]

Robin,,,,I know how hard it is at the end.  You just think it will never end and you are so tired of fighting the sides that you are weak. The great thing is you are at the end so hang in there. There is a light and its saying..Robin come to me! haha  
I will be thinking of you and cheering you on!


Kicked,,,Congratulations on your hubby being through and now you are halfway through both your battles!  You will be there in no time!

Cigaso,,,You will be amazing also! Its one week at a time and then you will be there!  I know its tough in beginning but set yourself goal markers and reward yourself for being there.  LOL I always would buy me more comfy pj's or new pillows,,,softest sheets or anything to make my life the most comfortable while going through one of the most uncomfortable things in my life!

Califia,,,I'm so sorry you are being challenged on an ongoing basis with the headache!  I could handle alot through tx but not the headache.  You can't do anything with a headache!  Califia,,,,try this,,,,It can't hurt anything:

Headache... Due to the electrolytes, drinking two packages of EmergenC or 2 glasses of Gatorade can relieve most headache pain almost immediately--without the unpleasant side effects caused by traditional pain relievers."

Now,,,I'm not sure since the headaches are coming from the meds for us,,,,but maybe check it out!  I will be so glad when you are through and feeling better just in time for summer fun! LOL

Take Care all of you and your fight with the dragon! Focus on the reason and smile,,,You will win!

[marchingon]

Honey, you are always so encouraging and generous with your good thoughts, there is a place in heaven for you girl!
Robin, I believe you and all the others that are in the final weeks of treatment are indeed in the toughest place. The sides really do seem to gang up on you at once. Your physical appearance has probably taken a beating and mentally you are just plain sick and tired of being sick and tired. I felt like I had a 1000lb weight on my head and my hair was 2/3 gone and my face skin aged 20 yrs overnight. But trust me, it does all come back and you will feel better. Hang in there, you're almost there!

[Califia]

Honey,  you are USDA grade A sweet stuff.   Just knowing you're out there feeling good again is real incentive and reassurance that  life will go on.   You go, woman!

You know how you reach a point where just don't care anymore about how bad you're feeling?   You just want to keep putting one foot in front of the other.   And that I'm doing.  I'm good, truly, just wandering in the desert for a while but I know the promised land's in sight.  My treatment sister feels probably way worse, has been on meds for 15 months now and still hasn't cleared.   So heartbreaking--and she's turning 60 this summer.  Me, I feel so thankful that thus far the treatment seems to be working for me.   I'm clear, I can still see,  no cardiac problems, still have some hair on my head.  As for the headaches, bring 'em on!   A small price to pay, I say.

[bon_vivant]

Hey Lady... I see you are still hanging in there... of-course I never expected any less from you....

I think that you, Ivette, Honey, Scott, & David, are my TX Mentors...

BTW= I noticed that you & someone else (think it was rev) that has brought up the vision, or going blind????

What is up with this??

My vision is SHOT.... & so is my hearing in my right ear...

The hearing I blame on the numerous ear infections I developed after completing TX... actually I blame it on that first one that I burnt my ear & ruptured my eardrum...

However, this vision thing is not only annoying... but it did not reverse during my short stint off of tx... & so far the only sx I am noticing on this new round, is a little sluggish today... but the vision is already WORSE than it already had become from last round... I can't even read the words on the TV screen any longer & bought over the counter reading glasses just to see to be able to read... computer/books... what-ever... I can't even read the back of a pkg of seeds for planting instructions now....

Ya'll please tell me this stuff is not gonna cause me to go blind... Have I been so ignorant that I overlooked this possible sx?

Also... if it does affect vision... isn't it only temporary???

Hope you start feeling better sweetie... hang in there... not much longer for you now!
:)

[Califia]

Okay, lady, I'm going to wade into this one.  Got my bright yellow Care and Counsel II  Side Effects Management Handbook opened on my lap.   (All this stuff is PDF'd on the Projects in Knowledge site, by the way.  Nice scary reading if there are no good horror movies on tv for distraction.)

Hmmm....in summary....visual changes can happen.  I quote (clearing of throat here):  "Opthamalogic toxicity of interferon is usualy reversible, but consideration should be given to treatment discontinuation when it occurs.  Any patient with opthamalogic symptoms should be sent for an opthamology consult."

Time for an eye exam, kiddo.  But of course I haven't had one yet, either.  Short of seeing cotton wool spots, which would have freaked me out and forced some sort of action, I decided to tolerate fuzziness and not change my glasses prescription until after tx is over.   I knew my nurse would overreact and I wanted both to spare her tender feelings _and_stay on treatment.    What an opportunist, huh?

Retinal effects are supposed to be caused solely by the interferon, but I can definitely testify that when I went up to 1400 mgs of riba for a brief week, the needle-like pains in my eyes convinced me to back off real fast.   And the fuzziness...good lord...it was like trying to see through the windshield during a slamming Florida downpour.    Now I'm just back to my usual middle-aged vision.   What a drag it is getting old!    Uh oh, I'm quoting Mick Jagger and identifying with the pill-popping housewife we all used to smirk so knowingly about.   How the mighty do fall....

Say, maybe you could do an independent eye exam?  

As far as changes in hearing, if anything mine has gotten more acute.   This happened with the very first shot, like somebody turned the volume up way too far.   I can eavesdrop efficiently from  60 feet.  And I know it's not just me.  Carolhab (from this board) and I actually met in a local deli, and were deep into a conversation about life on tx when a baby at the next table started howling.  We were both on our feet and grabbing our water glasses and cutlery before the words "You, too?" were out of our  respective mouths.    I sometimes wonder if  moderate hearing loss wouldn't be a real advantage.   Gawd that hurt.

So how are you doing thus far?   You are in my thoughts all the time, Vic.  That's short for victory, right?

[cbee]

Cotton wool spots?!!  I started seeing flashing lights (kinda like a camera flash) which lasted for 10 minutes or so.  This happened twice which freaked me out.  I went to the eye dr and he checked it out and said I was okay.  He asked me if I was seeing fuzzy spots at all.  When I asked why he said there would be concern about my retina detaching.  Just passing it along . . .


-cbee

[hepcgetlost]

Yes...I'm also falling apart. I did shot #70 of 72 yesterday...2 left...can't believe it. Seem to feel worse and worse with each shot (achy mostly...does anyone else feel that...like a bad flu but withouth a fever? also having terrible night sweats  again...had them at about 45 weeks, but not since. Now they're back with a vengeance.

only 13 days left for me now. I'm hanging in there. Love to all, Judi :-)

[layla]

The end is sooooo looong. Hang in there. Within 2 to 4 weeks after tx you will be experiencing energy you forgot about. I am happy for you. Just watch you thyroid. The night sweats were myfirst sign of being hyper. Your on the countdown! It will over soooo soon. LL

[Califia]

cbee:   Retinal hemmorhage is mentioned a lot, all kinds of nasty possibilities.  MENTAL detachment is what we really need to get through the side effect lists...  

Judi:  Thirteen days left?   A year and a half on this stuff?  Wow, you're a real fighter.   But get thee to the acupuncturist, woman!  Classic kidney deficiency, those night sweats.   Time to start healing all the debililty from treatment.   Btw, I also have those constant flu aches w/o fever,  started about 3 weeks ago around shot 42.   But I would imagine that muscle pain in the 40s (shot-wise) is not even close to muscle pain in the 70s, when you're even more wrung out.  All in all, us 48'ers are lightweights compared to you 72'ers.   Mere babes in the wood.  I seriously bow my head to you.

[Califia]

http://www.projectsinknowledge.com/Init/G/1628/index.html

They don't ask you to prove that you're a health care professional, so you can order hard copies for yourself and they'll arrive pretty quickly.  I ordered two sets, one for me and one for my internist.   Or you can download.  

There is no way I could or would make this stuff up, even with my hyperactive imagination.  I swear.  Now as for the wool spots, I think the tip off is that everytime you blink, you baaaah.  (Hey, I heard that!    And take those little hooves off the couch, would you?)

So promise me,  puhleeze, that you will definitely get your eyes checked out.  The flashing blue lights and the worms crawl in, the worms crawl out business is just a tad too Stephen King for my taste.   And I thought trifocals were a challenge.  Jeesh!  Humbled again.

[bon_vivant]

Humm..... Hang On... I think I am having "cotton wool" spots... whatever that is???? Only person I ever previously saw use that phrase was LouiseP.... I seriously do not know what that term means...

I'll have to get back to this post, (as I already have a headache from trying to read & respond to the upper post)...

So I'll catch up on this thread a little later.. feels like someone is hammering nails into my eyeballs when they get stained!

Got to take a nap now!

Califia, "I'll be back"... (As soon as I can see straight again)LoL

[bon_vivant]

Hey Lady,
What is a Care and Counsel II Side Effects Management Handbook??? LoL, & Where is this scary web-site

[bon_vivant]

LoL... you are so funny... I just think the world of you gal... you always put a smile on my face!

Thanks for the link.... & yes... I did make an appointment for next week, as there is no way I can go 69 more weeks like this... it's aggrivating to say the least...

The lady that I spoke with said the worms are what they call "floaters"????? Whatever that is.... but she also said I need to get this checked out!

So I promise.... & I'll let you know something as soon as I know!

Hang in ther Lady... you are almost there!

Thanks Again...
:)

[Califia]

De nada!   And I'm so glad you're following through.  Just can't hurt.