my week 10 PCR UND but somehow I still feel like crap

[scubadiver30]

Hi everyone:
My doc called today saying everything looks beautiful and my Hgb is stuck at 10, but the truth is that I cannot eat & sleep & rest. I'm retching all the time, and I can't even stand my own smell (and other people's too, what's with that? Is the anemia?
Immsonia, all body rash, extreme fatigue, and vomiting all the time is making me extremely anxiuos. Even showering is a bad experience...No cream or pill does the job...
My body rejects ibuprofen too
The appointment with the hematologist maybe will pose no answers cause my SX are mostly gastro related
The doc said I should eat soups, pures & liquids and no fat??? and what about riba absorbtion???

[wyntre9]

Hahahahah.

You really gotta take this material on the road!  :)

BTW, I read you post on the other side, the beautiful poem.

While I have different names, or, even no names, for other levels of existence, the concepts expressed are absolutely universal and therefore inspiring.

I'm gonna save it and print it out.

Just walk away.  Wasn't that the tagline?  I'll check it later.
(SEEEEEEE!!!! I'M ANSWERING YOU - just kidding)

[ladybug52]

Sounds like you, me and scuba were all on the same wavelength! Good thing we weren't all in the same room together, one of us would have gone postal. We would have all been sniffing the air and jumping at any noise! You were not an @ss*ole, you had a very valid reason to be frustrated and frightened. But yesterday is gone so we'll all move forward!
LB

[mremeet]

Thanks kalio, appreciate the encouragment. And you're right, not concentrating on the length of the journey ahead is the key. One thing I do is pick up my sharps container and flip the lid and look inside. There's 27 needles clanking around inside there. The container is starting to have a little heft to it, and when I handle it and look at it, it's a solid reminder of how far I've come. For me that helps give me a sense of accomplishment, and a sense that I made it more than halfway, I can go the rest.

Speaking of which, you've got to be nearing your EOT date. How much longer do you have to go? How have you been hanging? Hope you're getting along ok, take care.

Dberry - My girlfriend told me that I smell like her mother did when she was dying of breast cancer. I was...ehh, flattered. But it made me think maybe I smell like interferon and riba?? I've never detected any weird smells from myself, but if I do smell like a chemo patient, maybe the IFN does come out of our pores?

[ladybug52]

Isn't it great to vent? We have so many who hear our story and feel our pain. I was a total @ss yesterday, I thought I was going to climb the walls. Fatigue can make everything seem worse. I got a good night's sleep, hope you get some rest. And go give that mother-in-law a hug, I work with grandmas every day and just love them. (and yes, there are days their breath makes me want to puke!)Let me know what the hemo says Friday, I have the back up plan if needed!

[scubadiver30]

Ladybug
You're the nicest bug I've ever met.:-) Yes, Aiuta has my email, but I'm waiting to talk to the hematologist on friday about the Epo issue. Luv to you!!! :-)

Talking about IFN/RIBA effect to the brain. I used to be a nice fellow, always smiled and got along with everyone at work & neighborhood be4 tx. Even so that some individuals bullied me sometimes workwise (thinking I was soft).

But after 14 wks I've have become the meanest son of a gun in the world. My wife calls me Mr No. Always bitching...The phone, the light, the smells get me enraged. I'm always pissed and thinking i'm gonna kick some bystander ass
My poor old mother in law (she's 85) is a nice old lady, but she uses patchouli and you know, she and her room smell, like old. I'm always givin her hell. I tell her I'm going to give her the Rambo shower treatment with a high pressure hose in a prison cell. She does not know i'm on tx. How can I say that? What have I become? How can I be so mean?...but, on the other hand, being a son of a gun has got my wife alert to my every need. In the beginning she didn't believe that Tx was so bad, but I saw her the other day reading the prospect of a Copegus bottle and I saw it was an eye opener for her...

I thank God I can vent over here. I love you guys, you are the best. I cannot do this by myself..

[wyntre9]

Jeez, LB.  If you thnk YOU were an A**, I hate to think what that makes me!!!!

(An a**H**e?

You're fantabulous, you make me smile :) :) :) AND you're no BS Artist.  hahahaha

Wonder what happened to that hair?.

Scuba, after major meltdown yesterday, I'm even more aware of how you must be feeling.  Hang in.

[sunspot]

Hi scuba and nygirl.
I have not been posting much lately. My work PC is trying to block medhelp from me.
Debby, I am glad to hear that you are finished with tx and are in the recovery stage. In a few weeks you will be able to kick @ss and take names.
On the subject of smells, I had what I call Olfactory Hallucinations. I thought I smelled cigarette smoke a lot but nobody around me smoked and I even smelled it in my home that is smoke free. That was my most common phantom smell but there were others that nobody could smell but me. This went away post tx, thank God.
One odd thing was my normal sense of smell was still sharp as was my taste of food. There was no change in that department from the tx. Go figure.

My best to all on this board, you guys are the greatest.

[aquarius64]

i really am sorry to hear about your sx. i hope that things will get better for you. maybe things will get better down the road. here's a prayer for you!

[ladybug52]

Ginger works for nausea and it has a cumaltive effect. I have a recipr for home made ginger ale that someone sent oon the forum. I can send procrit on dry ice. Does Auita have your e-mail?

[copyman]

hey scuba, sorry you are feeling bad. maybe try aloe vera juice for the upset stomach. hope you feel better soon.

[aiuta]

Scuba, hang in, you are almost there.  At certain times, tx sucks, but you are almost there.  I am glad to see you post even though I'm sorry you're having a rough time recently.  It WILL end and you're almost there.  Don't quit before the miracle.  Tu amiga, Aiuta

[scubadiver30]

Well, thanks to all for responding.
I started using sleepin pills last nite (I cut one in half) and I didn't sleep at all in 12 hours :-(
So now I feel IFN lousy and aleepy with a weird mouth taste. I'm now on my week 14..
Don't want to eat just yet.
The smell I'm talkin about is like bromine mixed with something biological. It's disgusting. Ughhh
saludos and luv to all

[wyntre9]

"What is the smell you are referring to ? does it smell like something died ? the reason I ask, is for the last few days at work, I kept smelling this smell from time to time"

Finally, my two cents may be worth something.

As a heavy-duty allergy sufferer, I always have problems with odors from new environments, change of season, cooking fumes, chemical fumes, perfumes, etc.,etc..

I wonder if, as the TX works on the immune system and allergies are an immune system problem, they could be temporary med-induced environmental allergies?

Just a thought.

[dperry10]

What is the smell you are referring to  ?  does it smell like something died ?  the reason I ask, is for the last few days at work, I kept smelling this smell from time to time, and was beginning to think it was my coworker who sits in the same cubicle as me.  someone who responded, don't remember if was NYgirl or who now that I started replying , about that smell.. I am just wondering it was me.  All I smelled today was my conditioner I tried this morning.. LOL but the coworker was not there today either, soooo.. was just wondering what this smell is.

[wyntre9]

If it's any consolation, you're doing way better than me.  I think we're at about the same point - I'm at week 9, you're at 10, right?

[Kalio1]

Hey scuba, so sorry you are feeling so bad. You have made a lot of progress so far, remember it might not stay this bad all the time! Some weeks are worse than others, you are getting trhough it and almost half way!
Hang in there, do you take probiotics? Maybe that would help your stomach, or how about ginger ale and soda crackers? I had that nausea for most of tx and ginger and crackers did help.
Hope you feel better really soon.


MrE,

It is discouraging to look at the road ahead, that's why I only look back at how much I've done and tell myself I made it through that much so far, I can make it the rest of the way.
It just drones on and on and on, a real monkey wrench to our lives and then some!
Hang in there, you are getting there!

[nygirl7]

FLGuy Said" When it comes to those times when I know I needs to get calories in me, any appetite seems to go in the directions of things like pasta, bagels&cream cheese etc. "

I found that those were the things that were easiest for my body to tolerate. At times I craved spaghetti - and even though I had to stay away from EVERYTHING that was acidic...for some reason with the pasta it was ok. I guess the carbs soaked it up.

Feeling like **** - wretching, that horrible SMELL (which in the beginning I believe is us smelling the meds come out of our pores...heck I remember when I could smell it on my pillow even), being tired ALL of the time, being nauseaus ---- all were typical sides for me.

If it wasn't for ice cream and bagels I probably would have lost 50 lbs.

I learned to try a little bit of an item and if I could tolerate it - put it on the list and eat it all the time.

Gone are the days (temporarily) of eating buffalo wings and fries for me. So I ate just to keep calories going in.

I have to admit in the last few days I could TASTE things again for the first time in a year and a half. Wow.

I have an "atomic fireball" you knoe those red hot candies that you eat when you are a kid...sitting here on my desk for the last 74 weeks or so. I always said when I was better I could have it. Of course it's probably rotted but I'll eat it when I'm ready anyway.

It sucks. Just take it as meaning that your body is in a war and you are kicking some serious azz and that's why it's hard.

You can do it - it's just no fun is it?

From one who gets ya 100%.

---Unfortunately I still have the damn rash and am waiting for it to go away.

[mremeet]

Sorry to hear about your sides, and I'm with you - I'm truly amazed at how treatment doesn't seem to phaze a select lucky few. Did you see the post from the guy in his 50's (don't recall his forum name) that is running 27 mile marathons back to back while knee deep in treatment (with anemia even)?? Absolutely incredible!! And lab-rat here also has almost no sides, she's doing great too. I hate them both!! haha  ;-)

Anyway, hope you're feeling better. Like you I'm struggling along day by day, and that's how I try to think of it. I try not to think of how long I've got to go, otherwise it just seems too overwhelming. I'm in week 27 now, and it does seem like time slips by a little more quickly after the first 12 weeks (so far anyway). The rash, itchiness and anemia can just be overbearing. It's like having bugs crawl all over you all the time, but you're too tired to scracth yourself anymore. So I hear you there, wish I knew of a magic bullet to deal with these side effects, but so far haven't found one.

Well hang in there, just try and take it day by day. You can make it, although it is a miserable experience!!

[jmjm530]

I had problems with swallowing water too, would even reflux it up.  No real fix but adding a little flavor and drinking it warm might help. One suggestion is a bag of chamomille tea in a quart of water just for flavor and maybe add a touch of honey if you can tolerate. If the reflux is going way up, like into the vocal chords (hoarseness, etc) you might ask your doctor about putting you on two PPI's a day, not just one. The only good news is that most of the types of severe gastro problems you describe should go away when you stop the treatment drugs.

-- Jim

[scubadiver30]

Well basically I learned the hard way to stay away from acidic. I use to love orange & tangerine juice. Now even thinking about it makes me wanna puke.
On the other side I ate everything the first 8 wks but then I just ate whatever I could stand.
I'm taking omeprazol for reflux and a syrup called Primperan but does not work.
Even water is hard to swallow.
TX is very very hard. I cannot belive people do not have any sx

[jmjm530]

Sorry about that. Treatment often isn't a pretty picture. I had gastro problems from the get go. The soup, liquid, no fat thing is for your gastro/reflux? issues, but in fact, fat has little to do with reflux, at least with me. Personally, I'd take the riba with at least a moderate amount of fat. Maybe try less fat on your non-riba meals but as I said, less fat never helped my gastro problems much. Are you on a PPI like Nexium. I took 2 a day and helped some. Other gastro triggers are coffee, chocolate, fruits or anything acidic...

Hope you feel better soon,

-- Jim

[FlGuy]

Sorry to hear you feel so lousy.  There are a lot of people who would rather eat very well (healthy) but sometimes we are limited to what our bodies will accept.  Don't know about your doc's take on limiting fat, though.  When it comes to those times when I know I needs to get calories in me, any appetite seems to go in the directions of things like pasta, bagels&cream cheese etc.  With the vibrant cuisine in Espana, spicy foods would cause me gastric unease.  If I recall, procrit/epo not an option for you?  If not, hope the hgb stays locked at 10.