Aa
HGB dropping w/ no labs this week
Hello all of you beautiful HCV afflicted and otherwise inconvienced people. You have all been nothing short of a blessing to me since the day I was diagnosed.
I started my tx 3/24/06 (150mcg peg-intron/wkly - 1400mg Ribasphere/daily)and have completed shot #4 of 48 .
The day my tx started , my baseline HGB was 16, One week later it was 13.4 and one week later it was 12.For some reason , I dont have any labs scheduled for this week but start up again next week.
My question: I feel like I could melt into the floor. I find myself almost stagering through the house bumbing into every thing even close to being in my way. My muscles are so oxygen starved I had to switch hands when I was brushing my teeth this morning because of the muscle ache. I am afraid that my HGB levels have continued to fall at the rate they have been and no one is going to know about it until next week. Am I in danger of dropping too low and what happens if I do? The PA at my HEP Dr has contacted my insurance company to get approval on using Procrit but she hasn't returned my calls or emails this week and I'm pretty nervous about it.
I started my tx 3/24/06 (150mcg peg-intron/wkly - 1400mg Ribasphere/daily)and have completed shot #4 of 48 .
The day my tx started , my baseline HGB was 16, One week later it was 13.4 and one week later it was 12.For some reason , I dont have any labs scheduled for this week but start up again next week.
My question: I feel like I could melt into the floor. I find myself almost stagering through the house bumbing into every thing even close to being in my way. My muscles are so oxygen starved I had to switch hands when I was brushing my teeth this morning because of the muscle ache. I am afraid that my HGB levels have continued to fall at the rate they have been and no one is going to know about it until next week. Am I in danger of dropping too low and what happens if I do? The PA at my HEP Dr has contacted my insurance company to get approval on using Procrit but she hasn't returned my calls or emails this week and I'm pretty nervous about it.
If it gets really bad, and I agree with you on your assessment that it is continuing to drop, check into the ER. They will be able to do a CBC and, if it is really bad, can transfuse you. You may not be at that point yet, but they may also be able to give you Procrit at the ER. Sounds odd to me -- that they are trying to approve you for Procrit, but not checking your blood counts every week. Another choice is to go to your general practitioner and request a CBC.
Dropping from 16 to 12 or 11 would be like a bomb dropping. Welcome to the forum, by the way, and congratulations on your starting treatment. When you feel better, please give us your stats -- age, how long infected, genotype, viral load, biopsy stage -- favorite food and rock band -- anything relevant, you know.
Meanwhile, lay low, do not overentend yourself. My heart goes out to you. THis drug-induced anemia we experience is the worst part of tx to me. I am friole , by the say, a 1a, with a beginning vl of 1.5 million, have been clear since week 20 and am now on week #40.
Dropping from 16 to 12 or 11 would be like a bomb dropping. Welcome to the forum, by the way, and congratulations on your starting treatment. When you feel better, please give us your stats -- age, how long infected, genotype, viral load, biopsy stage -- favorite food and rock band -- anything relevant, you know.
Meanwhile, lay low, do not overentend yourself. My heart goes out to you. THis drug-induced anemia we experience is the worst part of tx to me. I am friole , by the say, a 1a, with a beginning vl of 1.5 million, have been clear since week 20 and am now on week #40.
I agree with all the advice above. Call the dr. as soon as possible, he needs to know how your feeling.
I for one, has a HGB od 7.6 and that's with 60,000 units of procrit a week. Let us know how your doing and what the dr. has to say.
Beagle
I for one, has a HGB od 7.6 and that's with 60,000 units of procrit a week. Let us know how your doing and what the dr. has to say.
Beagle
for those of you who don't know this.....
the procrit can be gotten free if you have no insurance, medicare or are poor. i know cause that's how i am getting all my help and meds.
also is anyone interested in the booklet i downloaded regarding side effects, tx, herbal support. all very medically approved and thorough. i can put a link on my site and upload it, it's in pdf format.
i am doing ok. only week 3, so i know i may have surprises ahead. i will start the procrit as soon as i hit 12 - for some reason that's my fainting line! but the lit says most people have problems, sx at first so i am holding out for being most people.
so far so good.... the last time i was pretty much in the gutter before i found out about procrit and that was the biggie for me. hope everyone is good today and keeping the faith!
ps- have big campground on river in texas..... middle of the country.
hep c campout????? this fall? music,massage, food & friends?
the procrit can be gotten free if you have no insurance, medicare or are poor. i know cause that's how i am getting all my help and meds.
also is anyone interested in the booklet i downloaded regarding side effects, tx, herbal support. all very medically approved and thorough. i can put a link on my site and upload it, it's in pdf format.
i am doing ok. only week 3, so i know i may have surprises ahead. i will start the procrit as soon as i hit 12 - for some reason that's my fainting line! but the lit says most people have problems, sx at first so i am holding out for being most people.
so far so good.... the last time i was pretty much in the gutter before i found out about procrit and that was the biggie for me. hope everyone is good today and keeping the faith!
ps- have big campground on river in texas..... middle of the country.
hep c campout????? this fall? music,massage, food & friends?
Doctor doctor doctor NOW.
I went from 15+ to 9 in a little over a week and I was almost physically DEAD. It dropped too much too FAST and literally when I tried to stand I would faint. There was just not enough oxygen in my blood and the "light headed" feeling caused horrible ringing in my ears and shortness of breath and pounding in my chest from my heart trying to keep up.
Everybody in here was telling me go to the doctors NOW and when I called him he seemed to think I was over reacting but I went in. Well long story short when he found out how much how fast and how BAD I was he immediately put me on Epogen. It kept me from dropping more but didn't raise me up.
Then he changed it to two times a week at 40,000 and finally I felt humanand went up to 15 and went back to once a week at 40.
Now...I am at about a 10.5 and it doesn't bother me hardly at ALL because my body had a slow drop this time - over MONTHS
But the Procrit/Epogen WILL take somewhere around 2 - 4 weeks to work! So you have to get started NOW because honestly there won't be much improvement until it has a chance to get into your bone marrow and grow new healthy red blood cells.
It's not just a quick fix shot it has a LOT of work to do before you will feel better!
so Please call immediately!!!!!!!!!!!!!!!
I went from 15+ to 9 in a little over a week and I was almost physically DEAD. It dropped too much too FAST and literally when I tried to stand I would faint. There was just not enough oxygen in my blood and the "light headed" feeling caused horrible ringing in my ears and shortness of breath and pounding in my chest from my heart trying to keep up.
Everybody in here was telling me go to the doctors NOW and when I called him he seemed to think I was over reacting but I went in. Well long story short when he found out how much how fast and how BAD I was he immediately put me on Epogen. It kept me from dropping more but didn't raise me up.
Then he changed it to two times a week at 40,000 and finally I felt humanand went up to 15 and went back to once a week at 40.
Now...I am at about a 10.5 and it doesn't bother me hardly at ALL because my body had a slow drop this time - over MONTHS
But the Procrit/Epogen WILL take somewhere around 2 - 4 weeks to work! So you have to get started NOW because honestly there won't be much improvement until it has a chance to get into your bone marrow and grow new healthy red blood cells.
It's not just a quick fix shot it has a LOT of work to do before you will feel better!
so Please call immediately!!!!!!!!!!!!!!!
I, too, agree you should get a cbc right now whatever way you can.
jerialice-Post your link to the file. I am sure others will want to see it. And thank you for sharing.
Update-I bet most of you misssed it cause my posts are usually buried due to posting late in the day. But, last week NP called to put me on Neumega since my platelets had finally dropped in the 50's and were staying there. Ins. wouldn't cover it so she said to come in for blood. I, personally, don't consider that an option for me and declined.
I took someone's advice and when I went for bloodwork yesterday, I walked up and down the hall as fast as my huffing and puffing would let me before they poked me. My platelets are now in the upper 60's. HGB is still dropping slowly, now in lower 10's again with 80 Procrit a week.
If I had taken the Neumega or blood, I would have unnecessarily exposed myself to more sides and risk of whatever with a transfusion. Guess I am saying, be a little patient till you get some bloodwork done and go easy on yourself. Treatment can and has really kicked a few of our buttes hard but it is a long trip to the end of 48 weeks and if we can wait awhile before putting more in our bodies, all the better on the other end. If you feel the need to rest 18 hours a day, do it. But, force yourself to drink water and keep eatting, somehow. Both can be very hard to do at times.
I'm not saying don't take the support drugs, just be sure the timing is right. Pre-approval is real important too. When I finally needed Neupogen and Procrit, it was a five week wait to see a hepatologist and ended up at the hospital for a quick blast of Neulasta and a dose reduction all in the first 12 weeks of treatment. That is a time you want to keep your dosage up if at all possible.
Let us know what you decide to do and good luck to you.
missmiss
jerialice-Post your link to the file. I am sure others will want to see it. And thank you for sharing.
Update-I bet most of you misssed it cause my posts are usually buried due to posting late in the day. But, last week NP called to put me on Neumega since my platelets had finally dropped in the 50's and were staying there. Ins. wouldn't cover it so she said to come in for blood. I, personally, don't consider that an option for me and declined.
I took someone's advice and when I went for bloodwork yesterday, I walked up and down the hall as fast as my huffing and puffing would let me before they poked me. My platelets are now in the upper 60's. HGB is still dropping slowly, now in lower 10's again with 80 Procrit a week.
If I had taken the Neumega or blood, I would have unnecessarily exposed myself to more sides and risk of whatever with a transfusion. Guess I am saying, be a little patient till you get some bloodwork done and go easy on yourself. Treatment can and has really kicked a few of our buttes hard but it is a long trip to the end of 48 weeks and if we can wait awhile before putting more in our bodies, all the better on the other end. If you feel the need to rest 18 hours a day, do it. But, force yourself to drink water and keep eatting, somehow. Both can be very hard to do at times.
I'm not saying don't take the support drugs, just be sure the timing is right. Pre-approval is real important too. When I finally needed Neupogen and Procrit, it was a five week wait to see a hepatologist and ended up at the hospital for a quick blast of Neulasta and a dose reduction all in the first 12 weeks of treatment. That is a time you want to keep your dosage up if at all possible.
Let us know what you decide to do and good luck to you.
missmiss
Said: but they may also be able to give you Procrit at the ER.
It wouldn't work though without the approval - a one time shot would do nothing.
And most times the insurance won't approve the Epogen/Procrit until you are in the 9s - which he is far from being. It's such a not fair thing to judge solely on numbers but...it is a $$$ making machine.
Somehow the doctor has to get it written up so that it will go through the insurance BUT without regular CBCs I just don't see how that will happen.
They should be done every WEEK during this - I don't understand what is going on with this doctor. He has no backup paper trail to HELP anybody get it approved in some other way!
It wouldn't work though without the approval - a one time shot would do nothing.
And most times the insurance won't approve the Epogen/Procrit until you are in the 9s - which he is far from being. It's such a not fair thing to judge solely on numbers but...it is a $$$ making machine.
Somehow the doctor has to get it written up so that it will go through the insurance BUT without regular CBCs I just don't see how that will happen.
They should be done every WEEK during this - I don't understand what is going on with this doctor. He has no backup paper trail to HELP anybody get it approved in some other way!
52TELE:
I think all above have given you good advice. Do watch those blood drops. As, others have said; if things get real bad go to the ER Room, don't wait til you faint. Really hope things get better for you.
Welcome to the Forum, sorry you have hep c. Congradulations on starting tx. I am 51 yr old Female, geno 1b, shot 16/48 and was Undetectable at 12 pcr. Good Luck and do stick around; lots of info and great people here to help you through this time in your life. We understand; because we are in the same boat. Good Luck!
MR.BB: I love to camp, this year has been limited so far. Just did not know what tx would bring. I went to Carpenteria Beach; which is at the begining of Santa Barbara. There is also, a state camp ground right outside of Malibu, called Leo Carrillo State Beach and there is another one on the other side of Santa Barbara, called El Capitan. There are many state campgrounds along this route. Pacific Coast Highway/ 101 frwy. If you have or know anyone that has AAA, you can get campground info for this area. You are allowed to make reservations I believe 6-7 months in advance. These places book up fast through the summer; so put a thought pattern to this if you seem interested when you come out here.
It really was nice to be somewhat normal for a change. I know fully normal will not come until after tx; but I will take somewhat normal anyday right now. Let me know when you and your family will be down here. Maybe we can hook up.
cajun
I think all above have given you good advice. Do watch those blood drops. As, others have said; if things get real bad go to the ER Room, don't wait til you faint. Really hope things get better for you.
Welcome to the Forum, sorry you have hep c. Congradulations on starting tx. I am 51 yr old Female, geno 1b, shot 16/48 and was Undetectable at 12 pcr. Good Luck and do stick around; lots of info and great people here to help you through this time in your life. We understand; because we are in the same boat. Good Luck!
MR.BB: I love to camp, this year has been limited so far. Just did not know what tx would bring. I went to Carpenteria Beach; which is at the begining of Santa Barbara. There is also, a state camp ground right outside of Malibu, called Leo Carrillo State Beach and there is another one on the other side of Santa Barbara, called El Capitan. There are many state campgrounds along this route. Pacific Coast Highway/ 101 frwy. If you have or know anyone that has AAA, you can get campground info for this area. You are allowed to make reservations I believe 6-7 months in advance. These places book up fast through the summer; so put a thought pattern to this if you seem interested when you come out here.
It really was nice to be somewhat normal for a change. I know fully normal will not come until after tx; but I will take somewhat normal anyday right now. Let me know when you and your family will be down here. Maybe we can hook up.
cajun
How far from Midland? Greetings from West Texas
On Procrit. I think many insurance companies use hgb of 9 as a guideline for the procrit, but not all. I started Procrit when my hgb was in the 10's and so have many others here. Sometimes the doctors say what they THINK the insurance companies will say - I know my GI does that - but a call into the insurance company may help. I have my own personal case manager at BC/BS and he is a gem. He volunteered to take my case becasue he has gone thru treatment.
On Procrit. I think many insurance companies use hgb of 9 as a guideline for the procrit, but not all. I started Procrit when my hgb was in the 10's and so have many others here. Sometimes the doctors say what they THINK the insurance companies will say - I know my GI does that - but a call into the insurance company may help. I have my own personal case manager at BC/BS and he is a gem. He volunteered to take my case becasue he has gone thru treatment.
hi cajun, just wanted to pop in to say hi, seems like youre doing better, and that's great...stay well...
The cost of living here is different; but you have to remember the pay scale is higher here. What type of work does your wife do. I will check with my husband for you and get the top type positions regarding money. We do pay more on gasoline here than elsewhere, enviromental laws make more process for the fuel; in turn cost is higher. I think the hardest thing for me was to CHOKE down the Property Tax. That can get steep in some areas. Different areas have different rates like for your car insurance, house insurance and it makes a big difference. If you pick the right area, you can survive; in beauty and comfort. But, do remember, nothing is ever easy in life. Work hard enough and you can acheive.
cajun
cajun
So how we doing cajun? I used to read your name and thought it was cajinlady. Always wondered why you lived in a cage. Sheesh glad i got that cleared up.
Just wanted to add something about insurance and support drugs. While I was waiting to convince GI to add Procrit, I had my GP's nurse (what a sweetheart) find out what she could from my insurance. Group Health.
The guideline they recommend is to begin support drugs rather than reduce treatment meds. I have a paper in my file from ins and showed it to the doc. He wasn't too impressed, all after he had reduced the drugs for four weeks while I am trying to tell him I needed the Procrit. He waited til the day he sent me to the ER for the Neulasta shot to refer me to cancer doc saying that he doesn't prescribe Procrit. Another five weeks later I finally got the procrit. It took another four to six weeks to really kick in.
So, know what you need to know NOW. Like, look in your ins. drug formulary, does it need pre-approval and how long will that take, do they recommend dose reduction before Procrit, who will actually prescribe it, if someone else-how long to see them.
Others will have more advice on what to find out now.
missmiss
The guideline they recommend is to begin support drugs rather than reduce treatment meds. I have a paper in my file from ins and showed it to the doc. He wasn't too impressed, all after he had reduced the drugs for four weeks while I am trying to tell him I needed the Procrit. He waited til the day he sent me to the ER for the Neulasta shot to refer me to cancer doc saying that he doesn't prescribe Procrit. Another five weeks later I finally got the procrit. It took another four to six weeks to really kick in.
So, know what you need to know NOW. Like, look in your ins. drug formulary, does it need pre-approval and how long will that take, do they recommend dose reduction before Procrit, who will actually prescribe it, if someone else-how long to see them.
Others will have more advice on what to find out now.
missmiss
I wrote the camp grounds down in my book, so I can check them out. I will be there from Oct.26th ant the first week od Nov.
My son wants us to move to Ca. but it's so expensive to live there. If I could find something reasonable I would do it in a heart beat. Will let you know when I'm there and maybe we can get together.
Glad to hear your feeling some what normal and I hope it keeps up.
Beagle
My son wants us to move to Ca. but it's so expensive to live there. If I could find something reasonable I would do it in a heart beat. Will let you know when I'm there and maybe we can get together.
Glad to hear your feeling some what normal and I hope it keeps up.
Beagle
Hi there,
Things are going better. I will be the first to admit that, it is all due to the AD's and Ativan; that I was so stubborn about starting. Being stubborn can do more harm than good sometimes. I am just in love with the new meds. Thanks for asking.
And, how are you doing. Hope good. You know we all deserve some good in this treatment. I think we all have to admit sometimes tx is just NASTY; and just about when you think you can't go on, you get two great weeks and that is what tells you this is doooooooable.
Have a great evening.
cajun
Things are going better. I will be the first to admit that, it is all due to the AD's and Ativan; that I was so stubborn about starting. Being stubborn can do more harm than good sometimes. I am just in love with the new meds. Thanks for asking.
And, how are you doing. Hope good. You know we all deserve some good in this treatment. I think we all have to admit sometimes tx is just NASTY; and just about when you think you can't go on, you get two great weeks and that is what tells you this is doooooooable.
Have a great evening.
cajun
You know, there is a reason people like Southern California. It is just absolutely gorgious most of the year. My guess we have nice weather 3/4 of the year if not more. What type of work do you do. Always, something out here that you can make a good living. Another way to contact me is ***@****
I think Nygirl asked for this too, so if you would pass that on to her, I would appreciate it.
You know the campgrounds are still open at that time of year too. Have you ever been out here. If not, well, you may not want to go back to any other weather. LOL
Oh and tell your wife and family hi from me next time you talk. And yes, feeling a little normal has been wonderful. Wish we all had more good day in tx.
cajun
I think Nygirl asked for this too, so if you would pass that on to her, I would appreciate it.
You know the campgrounds are still open at that time of year too. Have you ever been out here. If not, well, you may not want to go back to any other weather. LOL
Oh and tell your wife and family hi from me next time you talk. And yes, feeling a little normal has been wonderful. Wish we all had more good day in tx.
cajun
Will pass it on to NYGIRL. Yes, I've been out there 2x in the pass 2 years and I love it. Will tell my wife you said hi. How is the cost of living out there? I'm concerned about the housing cost. I'm retired from my job but my wife is thinking about going back to work. What's the best paying jobs to get into?
Beagle
Beagle
My wife was in management when she worked, but hasn't worked since we moved to Fl. Our son lives in Aliso Viejo,Orange county. What areas are good with property tax and housing cost?
We were boen and lived in NY till 4 years ago and as you know NY is high also in taxes and housing, the key is finding the right area.
Beagle
We were boen and lived in NY till 4 years ago and as you know NY is high also in taxes and housing, the key is finding the right area.
Beagle
I forgot to tell you, I sent NYgirl your e-mail but she hasn't answered me yet.
Beagle
Beagle
Thanks for the heads up. I'm taking something called "Optimum Enzymes" by Bluebonnet. It says to take 1 capsule at the beginning of each meal, but so far just been taking 1 capsule with breakfast.
Also, stopped taking Nexium (and all the rest of my meds!)4 days ago plus a number of dietary measures as mentioned earlier which hopefully will compensate for the Nexium withdrawal. But being realistic, I probably won't know for at least another week or two what's what, and if I can stay off GERD meds like Nexium or have to go back on something.
The trick with LPR is to heal the injured/inflamed tissues high up that can cause/trigger throat, ear and sinus problems. My theory (and hope) is that I was unable to do so on treatment because of a suppressed immune system, but now have a better shot as my immune system strengthens post treatment. Anyway, at this point, nothing to lose! Hope this finds you well.
-- Jim
Also, stopped taking Nexium (and all the rest of my meds!)4 days ago plus a number of dietary measures as mentioned earlier which hopefully will compensate for the Nexium withdrawal. But being realistic, I probably won't know for at least another week or two what's what, and if I can stay off GERD meds like Nexium or have to go back on something.
The trick with LPR is to heal the injured/inflamed tissues high up that can cause/trigger throat, ear and sinus problems. My theory (and hope) is that I was unable to do so on treatment because of a suppressed immune system, but now have a better shot as my immune system strengthens post treatment. Anyway, at this point, nothing to lose! Hope this finds you well.
-- Jim
Glad to hear you're weaning yourself off the various meds. In addition to the dietary items, are you taking things like milk thistle, ACV and I think you were a Centrum Silver guy? I'm using all three but have no idea of any impact they are haveing positive or negative.
Thanks for the number. How do you feel about the best post PCR test? What test are you going to do?
Beagle
Beagle
The test you speak of is what I will go with. Just found out from my dr. that is the test he will do from this point on, as I only have 8 weeks left. he uses those test near the end and post tx.
Thanks,
Beagle
Thanks,
Beagle
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