Aa
help me guys!!
Ok so here's my delemma, I just took shot #4 last Friday.. I'm very weak, having a lot of pains in places I didn't even know could hurt.. I have no appetite, forcing myself to eat..ok so here's the thing, I've been calling every week to get the results of my labs and the nurse just keeps saying you are doing a good job keep it up, but week by week I'm getting weaker and staying exhausted.. So today I told her to tell me if anything has dropped just a little and she says yes, your Hemoglobin.. Here are the dates and numbers 10/8- 13.6 10/15- 11.1 10/22- 10.3.. So then she tells me that I will probably will have to add another injection to the interferon and ribavirin.. I'm really PISSED, they didn't call me and explain this crap to me. I still don't understand really.. You guys here are the greatest and I know you will help!! I hope everyone is well, I've missed all of ya!! HugsX0X0
Oh, yeah ... when I took the four shots of procrit I was given, it was a huge boost in the way I felt!
I may know how you feel. My hgb hovered at 10.1 to 10.3 for most of my TX. I got procrit once when it fell to 9.6, but even above 10.0 I felt really crummy. Best advice is marshal and conserve your energy. Slow and steady.
Best of luck and health to you!
Best of luck and health to you!
"... the bomb baby - it's just awesomeness in an injection"
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And though it's true, your particular choice of words... could give people flashbacks lol.
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And though it's true, your particular choice of words... could give people flashbacks lol.
"I have no choice but to buck up!! Thanks for all the responses, I will get copies of my labs on my next appt which is Nov. 3rd!! "
Repeat after me:
" I am woman, hear me roar". Now, start ROARING.
LOL, hang in there sis.
Robert
Repeat after me:
" I am woman, hear me roar". Now, start ROARING.
LOL, hang in there sis.
Robert
No unfortunately not much choice cause you dont want to give up the fight that is for sure.
Get copies of everything (make them copy the old ones even) and put them in a folder or binder so you can refer back to them if you need to. They are very simple to read really (most of it isn't stuff we usually pay too much attention to like size of the red blood cells...or something...which i guess is important but generally doesn't even come up).
It really helps I am surprised none of us told you to do that in the first place it's usually one of the first pieces of advice we give, sorry!
Get copies of everything (make them copy the old ones even) and put them in a folder or binder so you can refer back to them if you need to. They are very simple to read really (most of it isn't stuff we usually pay too much attention to like size of the red blood cells...or something...which i guess is important but generally doesn't even come up).
It really helps I am surprised none of us told you to do that in the first place it's usually one of the first pieces of advice we give, sorry!
I have no choice but to buck up!! Thanks for all the responses, I will get copies of my labs on my next appt which is Nov. 3rd!!
Procrit is the bomb baby - it's just awesomeness in an injection. It will take a few weeks to kick in so you want that stuff NOW but boy it feels way different even going up a little bit rather than going down.
10.3 seems intolerable right now but if you even go up to like 11 you'll feel so much better you will freak out.
I dropped six points (from 15+ to 9) in just ten days. It was one of the worse physical experiences in my life. I could barely lift my head off the pillow, literally. However once the procrit kicked in and I went up to only 10.5 it was so amazing the difference it was astounding.
It is VERY VERY VERY expensive stuff (makes the cost of tx look like nothing) and believe me they dont want to give it to you unless you need it. I was taking 2 shots a week at 40,000 and the box only came with ten in it.............for $6,000. So that was 6k every five weeks. I was on it for 69 weeks total and would not have been able to succeed at treatment without it.
Take the shot it's no big deal to add one more (or even two) for the difference in how it will make you feel.
Buck up and hang in there..........10.3 isn't really that low to a lot of us. If we could do it you can too.
10.3 seems intolerable right now but if you even go up to like 11 you'll feel so much better you will freak out.
I dropped six points (from 15+ to 9) in just ten days. It was one of the worse physical experiences in my life. I could barely lift my head off the pillow, literally. However once the procrit kicked in and I went up to only 10.5 it was so amazing the difference it was astounding.
It is VERY VERY VERY expensive stuff (makes the cost of tx look like nothing) and believe me they dont want to give it to you unless you need it. I was taking 2 shots a week at 40,000 and the box only came with ten in it.............for $6,000. So that was 6k every five weeks. I was on it for 69 weeks total and would not have been able to succeed at treatment without it.
Take the shot it's no big deal to add one more (or even two) for the difference in how it will make you feel.
Buck up and hang in there..........10.3 isn't really that low to a lot of us. If we could do it you can too.
First off... ask for a copy of all of your lab work. The nurse doesn't look very closely sometimes, plus you'll have a better idea of how your body is responding if you can compare the lab reports.
My hgd dropped from over 14 to 10.2 by week 4 too. It felt horrible because the whole body is suddenly having to function on much less oxygen because hgb is what carries it to your body tissues. I never had to go on Procrit though because my hgb leveled off and stayed between 10.2 and 11 (I'm on week 29) Believe it or not, the body does get kind of used to the lower hgb because I don't feel as weak now as I did when it first dropped even though it is the same number.
Hang in there!
Diane
My hgd dropped from over 14 to 10.2 by week 4 too. It felt horrible because the whole body is suddenly having to function on much less oxygen because hgb is what carries it to your body tissues. I never had to go on Procrit though because my hgb leveled off and stayed between 10.2 and 11 (I'm on week 29) Believe it or not, the body does get kind of used to the lower hgb because I don't feel as weak now as I did when it first dropped even though it is the same number.
Hang in there!
Diane
your HGB is dropping like a rock, you will need procrit ASAP, you are exausted because there's not enough red blood cells to carry oxygen to your body and brain.
take the procrit and cheer up. If you are slender, they may need to lower your riba dose, you may not need as much, or you may be absorbing better than average, or not clearing it as well as most. It's the riba that tanks the hbg. How much do you weigh and what dose do they have you at? What is your free ferritin level?
take the procrit and cheer up. If you are slender, they may need to lower your riba dose, you may not need as much, or you may be absorbing better than average, or not clearing it as well as most. It's the riba that tanks the hbg. How much do you weigh and what dose do they have you at? What is your free ferritin level?
meakea: have not seen you post in a while, nice to see you pop in!
And agreed -- don't fix it if it ain't broken, but I readily admit I do tend to encourage people to start the Procrit at 10, and sooner rather than later because of my husband's experience. He wasn't started on it until the mid-8 range, and he ended up dropping as low as 7.1 even after 3 weeks of 2x40,000 IU per week and wound up needing a blood transfusion, and I'd hate to see anyone have to go through that unnecessarily -- even less fun than more shots!
And agreed -- don't fix it if it ain't broken, but I readily admit I do tend to encourage people to start the Procrit at 10, and sooner rather than later because of my husband's experience. He wasn't started on it until the mid-8 range, and he ended up dropping as low as 7.1 even after 3 weeks of 2x40,000 IU per week and wound up needing a blood transfusion, and I'd hate to see anyone have to go through that unnecessarily -- even less fun than more shots!
Your right, not everyone needs a correction. Then again when the hgb goes south it can sometimes happen fairly quickly and it's not something anyone wants to go through. My hgb declined at a steady pace from 15 to 10 in about 10 weeks, several weeks later it completely tanked until it was at 7.7.
My hgb dropped like a tank in the first 4 weeks, just as yours did. However, once it got to 10, it hoovered there and never went lower than the high 9's so I was able to avoid adding another shot or, worse yet, a reduction in tx meds. Point being that not everyone goes "too low" to need a correction. You appear to have a good doc who is on top of it!!
Considering your hgb is dropping quickly it would be good if they started the procrit soon. As bill mentioned it will take several weeks to work. The idea is not to bring your hgb to pre tx levels, just to keep you at a safe level (usually around 10-11 hgb) so you can continue taking the amount of ribavirin that you are taking.
This is a good sign as eureka mentioned you are getting a good amount of ribavirin and hemolytic anemia early in treatment is a good predictor of having a higher chance of svr.
Your doctor actually sounds like he is on it and ready to give you the procrit if you need it which you probably will.
Good luck - Dave
This is a good sign as eureka mentioned you are getting a good amount of ribavirin and hemolytic anemia early in treatment is a good predictor of having a higher chance of svr.
Your doctor actually sounds like he is on it and ready to give you the procrit if you need it which you probably will.
Good luck - Dave
Yep, it appears as if everything is right on track. You never know, the Hemo could bounce back as well. Remember to eat as balanced a diet as you can, even though your appetite may be suffering.
As always, the best thing is to try and keep as normal a routine as possible. If all you can manage is a walk around the block, then DO IT!
Stay tough,
Robert
As always, the best thing is to try and keep as normal a routine as possible. If all you can manage is a walk around the block, then DO IT!
Stay tough,
Robert
Missy, stay optimistic! It's great they are ready to offer you procrit, it's a better choice in your situation. My doc didn't care much when my hemoglobin dropped from 13 to 10, I just kept going, but then around month 5 it dropped below 8, and they decided to go with riba dose reduction. I've been UND since week 5, so by fifth month of being UND and losing more than 25 lbs on tx, they thought they could go ahead and reduce my riba a little.
Please, make sure you get to eat balanced diet, no matter how bad you feel, and get enough sleep. Procrit will help you feel better, but you most likely will end up with low hemoglobin till you finish tx. I stayed around 8 till one month post tx. I looked at it as - well, at least I can see that riba is working for sure :)
Please, make sure you get to eat balanced diet, no matter how bad you feel, and get enough sleep. Procrit will help you feel better, but you most likely will end up with low hemoglobin till you finish tx. I stayed around 8 till one month post tx. I looked at it as - well, at least I can see that riba is working for sure :)
Hi Missy—
Yeah, no wonder you’re feeling crummy and week; you’re hemoglobin is tanking. This is your red blood cells; ribavirin causes them to self-destruct prematurely, so instead of lasting 100 days or so, they are bursting much sooner. They are responsible for delivering oxygen to your muscle and organs; you might find yourself feeling out of breath, etc.
The drug used is called Procrit (or generically epo); t stimulates bone marrow production of new red cells, and the effort will be to keep them above 10.0 g/dL. This drug is also used in cancer chemo, which sometimes produces similar side effects.
They typically intervene around 10.0 g/dL with either Procrit or dose reduction of ribavirin; the former is preferred in order to give you your best shot at long term viral eradication (SVR).
It doesn’t work instantaneously; allow two to three weeks for new red cells to mature and the drug to develop full therapeutic value.
Good luck—hopefully this will help you feel a bit stronger—
Bill
Yeah, no wonder you’re feeling crummy and week; you’re hemoglobin is tanking. This is your red blood cells; ribavirin causes them to self-destruct prematurely, so instead of lasting 100 days or so, they are bursting much sooner. They are responsible for delivering oxygen to your muscle and organs; you might find yourself feeling out of breath, etc.
The drug used is called Procrit (or generically epo); t stimulates bone marrow production of new red cells, and the effort will be to keep them above 10.0 g/dL. This drug is also used in cancer chemo, which sometimes produces similar side effects.
They typically intervene around 10.0 g/dL with either Procrit or dose reduction of ribavirin; the former is preferred in order to give you your best shot at long term viral eradication (SVR).
It doesn’t work instantaneously; allow two to three weeks for new red cells to mature and the drug to develop full therapeutic value.
Good luck—hopefully this will help you feel a bit stronger—
Bill
What you're describing definitely sounds like the effects of anemia. Ribavirin can impact some people's red blood cells pretty significantly, and it seems like you're one of them. The good news is that it means your body is demonstrating good riba absorption... I don't have to tell you the bad news, you're body's screaming it loud and clear.
At a hemoglobin of 10 or less your treatment team should be starting you on Procrit -- yes, alas, another injection. For most people, it takes a couple of weeks to take effect, but when it does, you'll feel significantly better. The upside is that most people only feel the 'benefits' of Procrit -- for the most part, no bad side effects. However, not everyone has anemia severe enough to warrant Procrit, so maybe your nurse is one of the mindset 'only what you need to know.' I hope you feel better soon, and I hope that helps some. ~eureka
At a hemoglobin of 10 or less your treatment team should be starting you on Procrit -- yes, alas, another injection. For most people, it takes a couple of weeks to take effect, but when it does, you'll feel significantly better. The upside is that most people only feel the 'benefits' of Procrit -- for the most part, no bad side effects. However, not everyone has anemia severe enough to warrant Procrit, so maybe your nurse is one of the mindset 'only what you need to know.' I hope you feel better soon, and I hope that helps some. ~eureka
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