Aa
dehydration or anemia?
Whoa...I was doing AM dishes and started feeling really weak with heart pounding..and had to sit down...heart is still pounding several mins later..I think I'm drinking enough water and I didn't break out into a sweat or have thirst...But I'm not cold either...Is anemia from tx different than regular anemia? I'm getting #2 bloods done tomorrow...(I'm just finishing week #2...) Anybody experience this?
LOL...I like that one! Mayhaps we should all rename ourselves according to the effects of our side that plagues us the most...Hmmm...Mine would be...Itchy ribarump Mel...(sorry, TMI), or...TG for spellcheck Melinda...yup..that's it...LOL....It takes me forever to type something readable! I agree about the sides...Even if it gets a bit worse than this, I can live with it...I'm crossing my fingers on the vl too...I'm almost afraid to do it...
I feel the same, I just pmed that to a friend, the first two times I txed I was so alone, I can remember getting the riba rash, and panicking, asked the Doc he sort of shrugged said side affect, so what do I do? avoided the question!
So it is good to know things, good to say oh ok, that is probably my HGB,s or this or that.
Sometimes I try and cook dinner I start then have to rest, it would be funny if it was so dang awful!
Cracks up, in the shower IF i make it in, past the bed! I will stand there lean against the stall, and think this feels so good, so relaxing, I get scared I will fall asleep in there!
Stand there to blow dry my hair? Pppft I been flat hair Deb the last couple of months, with some grey stripes! That I did not pay for!
Iit is good that our sides aren't bad, mine were not horrible the first couple of times,
Best of luck with your viral load! Fingers crossed and I betcha it will UND!
Deb
So it is good to know things, good to say oh ok, that is probably my HGB,s or this or that.
Sometimes I try and cook dinner I start then have to rest, it would be funny if it was so dang awful!
Cracks up, in the shower IF i make it in, past the bed! I will stand there lean against the stall, and think this feels so good, so relaxing, I get scared I will fall asleep in there!
Stand there to blow dry my hair? Pppft I been flat hair Deb the last couple of months, with some grey stripes! That I did not pay for!
Iit is good that our sides aren't bad, mine were not horrible the first couple of times,
Best of luck with your viral load! Fingers crossed and I betcha it will UND!
Deb
You're so right! I'd thought anemia would simply cause a "run down" feeling...Not something that leaves you gasping for air after feeding the dog! I must admit, it is a bit bewildering! How on earth does a person stay in shape (even a light workout?) if they can't even shower without having to rest? (For the record, I have no men, toys, or anything weird in my shower! LOL)
Ty again...I'd rather be informed than clueless when another side shows it's happy little face. :) Though, in general, other than the fatigue, the sides seem to be lessening...Another week and I get my first vl done!
Ty again...I'd rather be informed than clueless when another side shows it's happy little face. :) Though, in general, other than the fatigue, the sides seem to be lessening...Another week and I get my first vl done!
I am on Neupogen for the duration, 80,000 a week. It is my least favorite, I get so much bone ache and feel miserable after.
The anemia is scary, it is not the normal I feel a bit tired sort. Breathing is hard and the idea that your heart is nor getting enough blood is very frightening! Going up the stairs is no fun!
The last couple of days I have actually felt better, so hoping it is adjusting.
Not trying to scare you, just it is so much less frightening if you know what is causing it!
Best Wishes!
Deb
The anemia is scary, it is not the normal I feel a bit tired sort. Breathing is hard and the idea that your heart is nor getting enough blood is very frightening! Going up the stairs is no fun!
The last couple of days I have actually felt better, so hoping it is adjusting.
Not trying to scare you, just it is so much less frightening if you know what is causing it!
Best Wishes!
Deb
it is quite common for the WBC to go down - and then back up and then back down and all around. Mine did and my doctor didn't even put me on Neupogen although I asked he said "let's wait and see" and he was right. But a LOT of guys on here have been on the Neup - it works fast and fixes you right up (unlike the Procrit which takes a little while).
You will get used to this all in time - once you get the initial sides medications figured out...it's pretty much downhill I think. Nothing compares to the anemia in my opinion and everything else is much more manageable.
I like your doctor - sounds like mine...he called me himself with news and I really appreciated that. In fact when he called with my SVR results he sounded more excited than me....we both expected failure and he was so proud of the accomplishment LOL!
Good luck!
You will get used to this all in time - once you get the initial sides medications figured out...it's pretty much downhill I think. Nothing compares to the anemia in my opinion and everything else is much more manageable.
I like your doctor - sounds like mine...he called me himself with news and I really appreciated that. In fact when he called with my SVR results he sounded more excited than me....we both expected failure and he was so proud of the accomplishment LOL!
Good luck!
Deb, NYgirl- I didn't have to call! The doc called me! (I'm VERY happy with my doc...) Wants me to come in to discuss "options"...also mentioned WBC and potassium are down and glucose is high...Hmmm...I'm being proactive at this point and starting potassium supplements...Not sure what to do about the WBC count...I am suspicious a 5 point drop in the HCT and 2 pt drop in HGB in one week has put me on the "watch" list...shouldn't the WBC be high if the immune system is being jacked up? All in all, I think my body is adapting..I'm still in the 48 hr post shot window and hardly any chills, no fever, teesy headache his time...I think I'm finally learning to pace myself!
lmr, forssegood -Things seem to be looking up! Ty for the support!
lmr, forssegood -Things seem to be looking up! Ty for the support!
well, I don't have anything too constructive to add...only that I admire you for doing the "am" dishes...am not even on treatment yet, yet I often let my dishes go to the pm, or the next am, etc etc etc...lol....hope youre feeling better as you read this...
See? She does the same thing to me! If I were you I would call! I drop fast also and low, Better to be prepared, Cause it is no fun! Take my word for it, my rbcs just went to alarm again, my HGB to 9.
They increased my procrit, to 60,000 a week and to get me caught up I did 80,000 this week.
Lmr I keep a little notebook and sometimes I print stuff to take with me. it is wearing and can be so discouraging sometimes. Helps you to remember the questions you want to ask. (Just remember to bring it with you) lol
You will get there!
Deb
Call Now! CALL NOW!
They increased my procrit, to 60,000 a week and to get me caught up I did 80,000 this week.
Lmr I keep a little notebook and sometimes I print stuff to take with me. it is wearing and can be so discouraging sometimes. Helps you to remember the questions you want to ask. (Just remember to bring it with you) lol
You will get there!
Deb
Call Now! CALL NOW!
This is so very helpful and informative! I've been following you along this thread, MM. Glad to hear you are feeling a bit better!!!
I am waiting for results from wk 1 CBCs. Feeling more weary by the day. I am still putting a mostly full day at work (teaching) and sheesh, I can't get out of bed for the rest of the day! (aside from my 8000 bathroom trips due to all that lovely water!)
Day #10 today. Feels like some sort of a landmark! Plan to check into all of the great advice above when I go in Friday for my wk 2 CBC. It feels SO good to know what to ask and what to look for ahead of time!
healing energy to all!!!!
(((((((((((((((((((( ))))))))))))))))))))
I am waiting for results from wk 1 CBCs. Feeling more weary by the day. I am still putting a mostly full day at work (teaching) and sheesh, I can't get out of bed for the rest of the day! (aside from my 8000 bathroom trips due to all that lovely water!)
Day #10 today. Feels like some sort of a landmark! Plan to check into all of the great advice above when I go in Friday for my wk 2 CBC. It feels SO good to know what to ask and what to look for ahead of time!
healing energy to all!!!!
(((((((((((((((((((( ))))))))))))))))))))
Yeah that is a two point drop in how long? It ain't my six but it's big - do not be fooled it's not just how MUCH it goes down it's how FAST it goes down. Your body just can't handle not having it's normal amount of oxygen running around to your heart. It's pitiful how much it really hurts physically.
See you are dropping fast in the very beginning and next week I'd be pretty surprised if you weren't at 10 or lower. THEN they WILL put you on Epogen or Procrit - you talk to your doctor right now and make sure! Start getting the insurance company approval in order. Talk to whoever is the specialist at your doctor office on insurance so they can start working on it NOW. Seriously.
Call the doc and say hey it looks like I'm sinking on the hgb dude...what's the plan? Can we get me pre-approved for some miracle juice if I need it? Well...maybe don't say it quite that way but you get the message.
Remember: it takes from 2 - 6 weeks for Epo to work. It has a HUGE job in there making new red blood cells in your bone marrow - it won't fix you overnight or anything so you want to take every single opportunity right now to get started so that when you see that 10...you can jam that syringe straight into your leg. End of story!
CALL NOW! CALL NOW! CALL NOW! CALL NOW! CALL NOW! CALL NOW!
See you are dropping fast in the very beginning and next week I'd be pretty surprised if you weren't at 10 or lower. THEN they WILL put you on Epogen or Procrit - you talk to your doctor right now and make sure! Start getting the insurance company approval in order. Talk to whoever is the specialist at your doctor office on insurance so they can start working on it NOW. Seriously.
Call the doc and say hey it looks like I'm sinking on the hgb dude...what's the plan? Can we get me pre-approved for some miracle juice if I need it? Well...maybe don't say it quite that way but you get the message.
Remember: it takes from 2 - 6 weeks for Epo to work. It has a HUGE job in there making new red blood cells in your bone marrow - it won't fix you overnight or anything so you want to take every single opportunity right now to get started so that when you see that 10...you can jam that syringe straight into your leg. End of story!
CALL NOW! CALL NOW! CALL NOW! CALL NOW! CALL NOW! CALL NOW!
Well, got the lab report via phone...Hgb has gone from 13.6 to 11.1 and HCT from 39.3 to 34.5 during week #2...so, not dangerous low...Week #1 the #s actually went up! Well, I'm sure to keep an eye on it...Ty all for your concern and great advice!...:)
I am so happy to see you!
Naw I didn't read that! I am just happy to see you! Have missed you! But am so glad that you are living life again!
hugs!
Deb
Naw I didn't read that! I am just happy to see you! Have missed you! But am so glad that you are living life again!
hugs!
Deb
Hey Deb.
When i wrote about HgB, i was saying it wasn't likely to drop precipitously from Sunday to Monday, when she can get in touch with her Dr. and have new labs drawn. I wasn't saying that HgB can't/won't decrease by 5 to 6 points within a couple of weeks, just that it's unlikely within a 24 - 48 hour period.
When i wrote about HgB, i was saying it wasn't likely to drop precipitously from Sunday to Monday, when she can get in touch with her Dr. and have new labs drawn. I wasn't saying that HgB can't/won't decrease by 5 to 6 points within a couple of weeks, just that it's unlikely within a 24 - 48 hour period.
Amens all that! it is hard to adjust PERIOD. One of my friends here on the forum is forever telling me that, and pushing me forward. She just did the same with you! lol
It does hurt inside, The range of emotions can change in seconds.
But Jd is right, we are here for you, for me that is awesome. First two times I txed I did it alone (family) This time I have friends, JD, Charm, my Nygirl Debby, so many on the forum, It is good to not be alone in your own head! My family is awesome, but till you txed, lived with it, Well enough said.
Ok I will tell you they have these cool little round things, you can move furniture with!
Oh yeah, they work a treat! On my feel semi good days I run around house and try and catch up!
Keep on smiling! We are to here to rage at, ask questions of, talk about balding. Why this or that happens and also to learn from you!
Deb
It does hurt inside, The range of emotions can change in seconds.
But Jd is right, we are here for you, for me that is awesome. First two times I txed I did it alone (family) This time I have friends, JD, Charm, my Nygirl Debby, so many on the forum, It is good to not be alone in your own head! My family is awesome, but till you txed, lived with it, Well enough said.
Ok I will tell you they have these cool little round things, you can move furniture with!
Oh yeah, they work a treat! On my feel semi good days I run around house and try and catch up!
Keep on smiling! We are to here to rage at, ask questions of, talk about balding. Why this or that happens and also to learn from you!
Deb
Better that than reduce the Riba dose, you want to take as much Riba as you can tolerate, esp. early on in tx
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A girl after my own heart! :)
Anyway MedicMomma you have to really change your mindset now - you ARE weak, you ARE tired, you ARE on treatment! You're not lazy for not doing the dishes all the way through or taking a nap or just wanting to order pizza and sit on the bed with a blankie.....you are on treatment!!!!!!!!!!!!! It's freaking HARD stuff! People that look at us can't understand because we might be grey and emaciated with hair falling out but they can't see how much it hurts INSIDE to be SO SO SO tired at times that you can't walk 20 yards. As long as your family really truly understands and is behind you supporting you........REST ALL THAT YOU CAN WHEN YOU CAN! The house can get clean another time or the kids can run the vaccuum.
You have to come first right now. That's IT.
I do remember my eyesight just going....like into a tunnel blacker and blacker just like you'd see in a movie when someone passes out. I never knew it hurt inside your head like a load of bricks were on my brain like that. But it sure did. So like JD said - be CAREFUL.
We got enough going on during treatment........don't need anything else to deal with!
Take care of yourself my friend!
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A girl after my own heart! :)
Anyway MedicMomma you have to really change your mindset now - you ARE weak, you ARE tired, you ARE on treatment! You're not lazy for not doing the dishes all the way through or taking a nap or just wanting to order pizza and sit on the bed with a blankie.....you are on treatment!!!!!!!!!!!!! It's freaking HARD stuff! People that look at us can't understand because we might be grey and emaciated with hair falling out but they can't see how much it hurts INSIDE to be SO SO SO tired at times that you can't walk 20 yards. As long as your family really truly understands and is behind you supporting you........REST ALL THAT YOU CAN WHEN YOU CAN! The house can get clean another time or the kids can run the vaccuum.
You have to come first right now. That's IT.
I do remember my eyesight just going....like into a tunnel blacker and blacker just like you'd see in a movie when someone passes out. I never knew it hurt inside your head like a load of bricks were on my brain like that. But it sure did. So like JD said - be CAREFUL.
We got enough going on during treatment........don't need anything else to deal with!
Take care of yourself my friend!
Tell your husband there's no danger you'll be moving anything larger than dollhouse furniture for a while. LOL! Stuff like washing the dishes and making the bed get me so out of breath I have to take breaks in mid-task sometimes. But this will get better with procrit and with that merciful adjustment your body makes when what can't be cured must be endured. Its not gonna last forever. Right now your job is getting to SVR, and thats a full-time gig with lots of overtime, you're not being a couch potato - just doing your job.
You are NOT alone! Post or pm anytime, we're here for you.
jd
You are NOT alone! Post or pm anytime, we're here for you.
jd
After my "freeway brain fog incident" (I forgot I was driving for a moment!) I decided that driving anywhere wasn't too good an idea...:0 This is so weird how things change so fast...I am even challenged spelling (TG for spellcheck!) anything...Well, I can still find my backside with both hands, and I'm still able to quilt...:)..and I have several coworkers that would LOVE to drag me off to the ER in their ambulance!!! (I'm a paramedic) No worries...This'll get sorted out..My husband is worried that I'll get too bored and rearrange the furniture...LOL I should have him read some of the posts...
Hemoglobin can really drop of steeply. Like nygirl, I had a very steep drop early on and wound up in hospital, just within the upperlimit of the transfusion range. I think we who have been active before tx may notice the oncoming weakness more and sooner. Its shocking I know, I was out of breath from raising my arms in the shower to shampoo my hair when I first noticed how weak I felt.
Don't drive while you feel this way. If you need to go to ER, call 911, you're a hazard on the road. Also, you're vsion can suddenly go out from insufficient oxygen to the brain VERY SCARY.
I've been struggling with hgb since week 5, have been on and off procrit throughout tx and finally (2 weeks ago) my doctors put me on procrit "for the duration" Better that than reduce the Riba dose, you want to take as much Riba as you can tolerate, esp. early on in tx. Get your cbc and ask about procrit, it takes a while to work and can take a few tries to get to the proper dose for you.
Good luck - please advise how it turns out.
jd
Don't drive while you feel this way. If you need to go to ER, call 911, you're a hazard on the road. Also, you're vsion can suddenly go out from insufficient oxygen to the brain VERY SCARY.
I've been struggling with hgb since week 5, have been on and off procrit throughout tx and finally (2 weeks ago) my doctors put me on procrit "for the duration" Better that than reduce the Riba dose, you want to take as much Riba as you can tolerate, esp. early on in tx. Get your cbc and ask about procrit, it takes a while to work and can take a few tries to get to the proper dose for you.
Good luck - please advise how it turns out.
jd
medic, best of luck, I have a constant battle with HGB, Debby is right.
The worse feeling, and harder when your active normally, learning to adjust for me is also a constant battle! That is why I post way to much!
Take care and do let us know!
Deb
The worse feeling, and harder when your active normally, learning to adjust for me is also a constant battle! That is why I post way to much!
Take care and do let us know!
Deb
Waiting for labs...Ty so much for the support...I'm sitting here asking myself, "Am I just whimping out? Maybe I'm making a bigger deal out of this than needs be...Maybe I'm out of breath because of lack of really good activity for the last 2 weeks...and I'm turning into a computer chair potato..." It seems weird that one moment I'll be just doing normal stuff (vacuuming, etc) and then the next, boom!, out of breath and rubber legs...Grrr...I got stuff to do! LOL Well, if it is the low HGB, at least it's treatable..More than anything, I'm afraid my doc will freak and pull me off tx...I know I'll clear if I make it through...The brain fog is already better! -And mystery aches are gone...:)Ty all..I'll post later when I know...
If you've only been on TX for 2 weeks it's highly unlikely that HgB would have dropped to between 7-9, which is transfusion range
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Unfortunately for me that isn't exactly true - I dropped six full points between week 2 and 3. My doctor didn't catch it because it was so drastic so early - but I insisted and he gave me the C BC and there it was from 15+ to 9 in that amounf of time (yes I was taking a LOT of riba - way too much I admit)
But it can happen.
And wyntre is right that's exactly what it feels like...heart pounding, feel like blacking out (I kept fainting), hands shaking ----
Please be CAREFUL on the stairs (HOLD THE RAILING) and driving (GO SLOWER THAN USUAL so you have more reaction time) - this is a serious problem. I would call today right now and get those results..........if it is the HGB you're going to have to start on Procrit ASAP cause it taakes from 2 - 6 weeks to work and many times it has to be adjusted up then down then sideways and all around to get it just right!
GOOD LUCK!~
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Unfortunately for me that isn't exactly true - I dropped six full points between week 2 and 3. My doctor didn't catch it because it was so drastic so early - but I insisted and he gave me the C BC and there it was from 15+ to 9 in that amounf of time (yes I was taking a LOT of riba - way too much I admit)
But it can happen.
And wyntre is right that's exactly what it feels like...heart pounding, feel like blacking out (I kept fainting), hands shaking ----
Please be CAREFUL on the stairs (HOLD THE RAILING) and driving (GO SLOWER THAN USUAL so you have more reaction time) - this is a serious problem. I would call today right now and get those results..........if it is the HGB you're going to have to start on Procrit ASAP cause it taakes from 2 - 6 weeks to work and many times it has to be adjusted up then down then sideways and all around to get it just right!
GOOD LUCK!~
TY for your concern...had labs done today...And doing about the same...If this is what it feels like to be old, they can have it!LOL..I'll find out tomorrow (I think) if anything has changed...The lab tech and I have become friends...He felt bad because, for the first time ever, he had to poke me twice...Maybe I do need more water after all...:) I'll keep you all posted! Ty again for the support!
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