Labs In- 21 weeks & holding

[charm27]

I just received my labs from last week- week 21 of tx. 4 weeks ago HGB- 10.8
                                                                              2 weeks ago HGB-11.2
                                                                              This week HGB    -10.6
My PA said since the beginning I have and
continue to be stable so far, although this has been the lowest. Again insurance company will not approve procrit till it goes under 10. I dont feel dizzy but am very very winded and out of breath if I pick up anything.

And yet some of  you have a HGB of under 10 and are not on Procrit. I dont understand. How do you do it?
I was advised being I havent had a fast decline in HGB since beginnning I shouldnt worry. Im still in the safe zone.
Tx has really begun to take it toll as far as everything, which was to be expected I just feel so depressed and no bigger than an ant. I am taking an A/D.

Just faxed a resume came back and collapsed ont he bed. I never thought depression could grab me like it is. I never suffered from it before but Im washed out.
Been trying real hard though!
Charm
I should be happy I was UND at 8 weeks.
No rescue drugs yet? Why am I feeling like Im one inch big helpless and hopeless. I have alot to be thankful for here and yet I feel like my brain is silly putty and my body looks and feels like a green "gumby" doll.
Thanks for hearing me whine.
I thought I was a tough girl. NOT!
                                                                              

[Deb_c430]

Aww, you are doing so well! be glad about that.

But I do not think depression works the same way as it does with a person not txing does. This is chemically enduced!  I think for people like you and me, that is why it is so hard to deal with when it happens with txt,

You are strong, you are tough, you are one of my favorite people!  Honest and just plan old fun!

Hang in there, I am gumby too, I am exhausted, and feeling so blah.

Your breathing bothers me,  mine is not as high as yours yet, though I am gaining on you, and my breath has gotten better.   Just go slow,  

Hugs you my friend!

Deb

[charm27]

Thanks...I guess everyone has their breaking point with tx. Some first month, others last couple of months I just hit mine and Im almost half way thru.
I am whipped! Feel like Im tied to a whiping post.

Feel good Deb.
Charm

Thank you from the heart I really needed to whine today. Sad..........

[Deb_c430]

That is the truth!  We all go through this,  some more than once!  It is such a burden.     The wall is no fun to hit!  Guess I am gonna have call in the funny police!

Whine away my friend,   you have earned the right!

[charm27]

As long as you call in the funny police I will be ok!  Send them on over!
Thank you Lucy!

P.S.: Very hard to comprehend how an injection and pills can turn your life into a jigsaw puzzle.

Have a good day and dont forget call the funny police when you have a chance!
I know people on chemo that dont feel like this??
And yet I remain grateful for what I have and what I dont.
Have a decent day Deb. Feel well.

[HectorSF]

Hi Charm. Hang in there. Part of being tough is acknowledging your suffering and then moving forward with tx dispite the suffering.
I'm experiencing similiar issues myself. Over the last number of weeks this tx has been really wearing me down more and more. I keep missing more days of work and don't bounce back after my injection like I did earlier on tx. I feel pretty miserable most days now.

I can't comment on helper drugs as I have no experience with them but I would like to say a few words about depression as I believe it is a commonly misunderstood illness which I unfortunately/fortunately have had experience with earlier in my life.

Depression vs. fatigue.  It may seem like mincing words but there is a big difference between the two. Fatigue is ONE symptom of depression but it is not depression. Depression is a mood disease. It is constant feeling of helplessness and hopelessness, which can include thoughts of taking one own life because life doesn't seem worth living anymore. When I was depressed everything in my life seemed gray, lifeless. Food can have no taste. Things that you used to enjoy seem boring, unexciting. You might feel more dead than alive. Major clinical depression is more AN ABSENCE OF FEELING than feeling “down”. (Note: there are different types of depression. I am talking about my own experience here).

From Medicine.net: Symptoms of Depression

Persistently sad, anxious, or "empty" mood
Feelings of hopelessness, pessimism
Feelings of guilt, worthlessness, helplessness
Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
Insomnia, early-morning awakening, or oversleeping
Decreased appetite and/or weight loss, or overeating and weight gain
Fatigue, decreased energy, being "slowed down"
Thoughts of death or suicide, suicide attempts
Restlessness, irritability
Difficulty concentrating, remembering, making decisions
Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders, and chronic pain

I realize that SOME of these symptoms are similar to the side effects caused by our treatment meds. So in my opinion it is important to distinguish between the common side effect of tx and clinical depression.

On this tx I have felt extremely fatigued. Sometimes I don't have the energy to walk a block without being out of breath. But my mind, my will power is still here. It is giving me the strength to continue this treatment even though I don’t think it will work for me. Based of my cirrhosis and my vl tests up to this point things are looking good as far as my tx is concerned. But I have HOPE. A DESIRE, THE WILL to overcome this virus.(When I was depressed I felt hopeless and helpless) I need to at least give this tx a try. And then I will go to Plan B, C, whatever it takes to live. I go through the emotional ups and downs of treatment like I go through the emotional ups and downs of life. Some days I'm happy. Somedays I'm angry and a millions other feelings everyday too. When I was depressed, every day was the same gray, dead, nightmare. So for me I know I'm not depressed. Which I am grateful for. It was major concern for my docs and myself when I stated treatment. I am on an antidepressant as a precaution.

I hope I have been able to shed at least a little light on this subject. If you still think you might be clinically depressed I am here to share my experiences with you and will help you in any way I can.

I'm glad you were UND at 8 weeks. Congratulations! Hang in there. It will all be worth it if you can kill off the virus!

Hector

[charm27]

Thanks for all your comment. No I dont belive I am clonically depressed I have never suffered from depression. These drugs have just  taken their toll on me. I belive they are caused by the meds which in turn doesnt make it easier but at least know when tx ends I will be able to function at a better level which in turn will make me happy again.

Yes it will be worth it "if" I can kill this virus. Most defintely.

I believ I am thorougly exhausted mentally and physically which is all part of this tx.
A hard ride to handle but 1/2 way done.
Thank you for your input.

[jdwithhcv]

Hang in there, girlfriend!  For me this stuff runs in waves and I'm in a trough just now.  But there are better days ahead and every day of zombie hell brings me one day closer to SVR.  I believe that for me, and for you also.  We can beat this thing - we are virus killing zombies!

jd

[GingerB]

I have had some bad days when I felt like I couldn't make it...and then all of a sudden, I'll have a better day.  So hang in there....there will be better days.
You're half way there....half the battle is already over!
Hope you feel better....GingerB

[charm27]

jd-You got that right virus killing zombies! geez..everytime I say to myself I feel somewhat better I get slammed worse! Ive just reach a point of total exhaustion. Yawn,................
and my brain is more tired than the body thats the worse part. Im hangin in !

ginger-hope your doing better. yep half the battle is almost over. Thank you both so very much. I am zombified!!!!!!!!!!!!!!

[Deb_c430]

I like that! ANTI VIRUS KILLING ZOMBIES!

I actually felt better this week, I think because as hard as it was ii felt motivated!  Walked a bit more, so adding a quick walk to the agenda!  

Puts arms in front of body, the vague look is already there,  Does the zombie shuffle!

[charm27]

Thank you for your warm wishes. I sent you a PM.
Regards .

[charm27]

im such a retardo! I made it 34 instead of 24! Cant take me anywhere lately!  L O L

[charm27]

Just wanted to say I dont like "whining" threads much. But we all have our turn it seems.
Thanks for allowing me to crab. I live alone and have no support system..thats when I bug all of  you!

:}

[geterdone]

charm, you know I hit my lowest point in depression close to the end of Treatment but the good thing that came out of it was I do have something to look back on when feeling low and know how lucky I was to have supportive people here who understand where I was at even though I didn’t. Hang in there charm your coming up on the half way point.

jasper

[charm27]

im hanging int here. thanks. just gets really tough sometimes. Im giving it my best shot.

[Mikkimoe]

Hi all - I'm starting week 2 a bit more optomistic then 1. I felt like a victim on week 1. This week I'm taking control. I have a friend who is a specialty pharmasist/nutritionist and has come to my rescue. Today was the "bad" day after the peg. Last Monday was the pits. So decided to try some of his whole body suggestions and am pleased to say I'm feeling pretty chipper I added a few new suppliment - upped the C to 1000 x 2 p/day - added iodine (iodoral) and Q-10 (200). And this is the best...take cottage cheese (has to be low fat) Put a couple tablespoons in your blender add raw organic flax seed oil (refridgerated kind) 1 to 2 tablespoons, a tad water, some honey and vanilla extraxt or fruit. Blend to a smoothy and drink 2 to 3 times a day. Bye bye fatigue, achy joints, palpatations, headaches, mood swings and any cancer trying to grow  (I used the combo flaxseed and Borage seed oil - better for RA). So far feel much better - just minor toots -ha. I'll let you know how it goes after afew days - he is also sending me a magic potion for the pro-prebiotics. The point of all of this is to get off my drugs such as prednisone, antiinflams, prilosec AD's not to mention get me through tx without a crash and burn.

Take Care,
mikki

references include Linnus Pauling vit c theory -   Dr.Johanna Budwig the oil and cottage combo

[charm27]

I wish you good luck in starting tx. May your sx be easy on you.
Believe me I have tried it all, tx can be bruatl for some as per the three doctors that told me this. I have my moments ok feeling ok just not often. But I was warned-lol!!
For most the fatigue is worst.

Hope you ail thru!
Charm

[Trish77]

I just wanted to encourage you, Charm.  You have already shown you have what it takes and sometimes what it takes is to be able to vent how you feel on a tough day...or days.  You'll get through this.  I've seen what you've already gotten through.  Don't worry about your hgb .. accept the breathless and work with it.  Don't let it upset you.  Your hgb does seem to be staying stable and that's good.  

I like Hector's post .. big difference between having some bad days and feeling depressed.  Just the same, keep an eye on it.  You don't want to suffer any longer than necessary so .. be kind to yourself yet again .. rest when you need to and so what if you collapse on the bed.  Just take care of yourself.  

You can even hang up the cape for a little while.....take the time to say "man, this sucks..." but then say "but you viruses suck even more and you're going down...NOT me!!"    

Hang in there, sugar.  You'll get through it all and you'll get your SVR.

Take care...thinking of you.

Trish

[charm27]

Thanks. How are you holding up> Hopefully well. Yeah what a ride- From week 7 thru 16 was the worst so far. No Im just tired mentally and physically. To be expected  I know. As far as the capes its time for a brand new one! lol
Im just in a place Ive never been tho  to be expected I just really thought being the headstrong person I am I would get thru this a little better than I am. But these toxic drugs have absoluely no mercy. Your right I have been worrying about my HGB just didnt want another drug in my system. However I cant do anything about that either. I just really needed to crab yesterday...
I wish ya the best and hope also  that your ride is kind!
Its not that bad for me just not that good. Like I said b4 I do have alot to be grateful for so far. Im UND!
But sometimes you need to let it out!  LOL Tx sucks!
Take care of youself, and feel good.

[nygirl7]

to Charming Charm

Things should begin to get better for you.  Your body will learn how to acclimate to the 10.5 if it doesn't go lower and enable you to get the Procrit.  By the time I got the meds the best we could really do was keep me up at just about exactly 10.5 and I felt pretty "normal" (taken in treatement context of normal).  My body started to get used to running on less oxygen I guess or I got used to handling myself differently.

The human body is just absolutely amazing in what it can do.  I hope that it turns around for you quickly or that you lose that stupid .5 and get the epo.  It's so STUPID to hagger over such a small infintesimal (spelling?) number such as that isn't it?

Treatment DOES suck but remember...it does end too!  :)

[Deb_c430]

I wish they would let her do procrit also, even if just 20, a week, to help her just a bit!

I think the oxgen theory is what is happening to me right now. I am adjusting.

I worry about her, she is tough tho,  she may want to stop but its not in her! She is stubborn!

[Mikkimoe]

Sorry your feeling so bad. I feel your pain...I hate being so tiered and exhausted all the time. But am holding up fine mentally so far (only week 2 ha).

I have noticed a big improvement in my energy in the last 2 days since I upped the Vit C (buffered 1000 x2 p/d) and the flax (good liquid refridgerated kind) and cottage cheese thing really picks you up as well as xtra iodine. I'm working with a nutritionist and he is sending me another probiotic etc. concoction as well - I'll let you know how it goes.

Here are the links - check it out:
http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html
http://www.vitamincfoundation.org/
http://www.optimox.com/pics/Iodine/opt_Iodoral.htm

[Mikkimoe]

Just realized i already told you all that - guess it's not helping much with the brain fog huh?

lol

[Lady Lauri]

Catchingup on post now!!

I thought I was a tough girl. NOT! ..............
That was SO me, cept I'd say ..." I thought a was a bad a*s....NOT. A woosy!"
But NOT so. This sheeet kicks the toughest to an ant!  So sorry your having a rough time. It's such an emotional roller coaster. Your actually doing great 21 weeks in and just going 'down' more!
That low Hgb will kick your tail too! Fatigue doesn't help trying to keep spirits up either.
You need to stand (or sit,lol) up tall girl! This is h*ll, MANY drop out/quit, many can't even do it. ANYONE doing this, done with this is a tough bad a*s!

Hang in there Charm (ing:).....it'll pass.

(((hugs))) from a bad a*s, lol........LL