HGB at 9.7

[Junebug812]

First, thanks to this forum for helping me sort out the world of hep c treatment, though clearly I have a lot to learn still.

I've been posting about my breathing difficulties and extreme tiredness. My latest lab results show that my HGB is at 9.7, a small drop (was 9.9 two weeks ago). My doc emailed me,  "we can discuss the booster shot to see if it would help or if other treatments would help.  With the heart racing and trouble sleeping I wonder if the symptom is being worsened by some of the insomnia side effects we discussed that can occur."  Clearly he does not want to put me on Procrit. When I first started having these symptoms (difficulties breathing, cough, voice has changed, chest heaviness), he said the symptoms didn't sound like sx of tx and that I should see my GP, which I did. Nothing else wrong with me, my GP felt the symptoms were sx of the tx.

I am starting to wonder if I should just try to be stronger. As my doc just told me, I knew there would be side effects. Clearly he doesn't think I need intervention. I am going to try to talk to him by phone today. Can anyone give me advice as to what I should ask? He's going on vacation in two days and will be gone for 10 days. He said if I need anything while he's away, I should talk to my GP or to the first hepatologist I talked to at Kaiser (whoever that was). I am hoping to get this at least clear in my mind before he leaves.

BTW, I am at shot 11/24, Genotype 3. HGB baseline (well, in August 2010 at least, they didn't do a baseline before tx started), was at 13.5 and my hematocrit in August was at 39.7. I started tx on Dec. 3, 2010.

Are there many of you who had low HGB levels and no intervention? How did you get through without help?

Sorry if some of my questions seems redundant from my last post. With this new assessment from my doctor I find I am trying to assimilate the previous info I've gotten and am trying to reconcile it with how I should proceed and what changes I need to make to get through this, whether they be psychological or physical.

Thanks very much.
June

[merryBe]

relieved you were able to convince him, a 4 point drop is signicant,

remember that once your HGB gets that low all the procrit is likely to do is keep it from going lower...because the riba continues to stay in circulation you will see red blood cells dropping like flies throughout tx.

The addition of the procrit will stimulate the marrow, and keep you from driopping any lower, but if you are like most folks who report back, they often see just a one point rise, and then back a point...like a yo-yo...
so it may not get much better with the procrit but it will stop getting worse. Without procrit you could continue to tank, or worse, pass out on those stairs and go bouncing down them. Its important that your doctor become aware of this fact that the "we'll see" doesn't become his excuse not to keep you on it if he sees no significant improvement. If you don't improve a lot it means you've gotten to a good level of riba in your plasma...it does not mean stop the procrit!!!!!

Also, no you had no iron work. Ask for a full iron panel to be done. Do not take iron or eat high iron foods without knowing if you need the iron which as I said, you probably DO NOT need it. Only the lab can be sure.

You eat animal products so your chances of being low on B12 or iron are low.

[Junebug812]

Hmmm, for some reason this post posted way up the thread, so sorry for the repost NYgirl, just wanted to make sure I responded to you.

Nope, haven't noticed people hovering outside my window at night desperate to get in to have a snack, though a lot of loud obnoxious drunks stroll by at 3 in the morning looking for their cars.

I was prescribed 40,000 units, once a week. I start tomorrow hopefully, if it is available at the pharmacy. I have a standing CBC order for every 2 weeks. I did notice that when I was in the 10's, I was tired and somewhat out of breath. I could still go to the gym and ride the bike for 20 minutes (not at my previous level), and I could do some weight lifting, again, not at my previous level but at least I could do something. Now I literally can't even walk to the gym which is only 3 blocks away! It's been a huge difference since I dropped to 9.7. To be honest, I've noticed a significant difference from 9.9 to 9.7 even. When my doc saw this latest drop (the 9.9 to 9.7) he classified it as "essentially no difference in hgb," but why doesn't it feel that way to me? He wanted to just keep on course, don't do anything, and see if it continues to drop in another 2 weeks. Not to be a wuss or a drama queen, but with how I'm feeling I questioned whether I'd be alive in two weeks just keeping on course. Yesterday I walked to the corner cafe to get valentine's treats and things started to go black while walking back and I started to weave while walking. I looked like one of the obnoxious drunks who stroll by every night, only I don't think I have enough oxygen in my lungs to be loud! Not one to wish misery on anyone, I did want to say to him yesterday during our debate about how I feel, that I wish he could see what this feels like, even for just one little walk down the street.

I'm a social worker; I work with severely disturbed children. On Friday I was with a kid at juvenile hall and I almost fell when I get to the top of one flight of stairs. I was out of breath, heaving, and the kid got concerned. I realized that I can't continue at this level and be with kids in the community. I asked my agency to sanction a modification of my duties so that I'm not in the community alone with the kids in case I pass out. Not safe for them. So yeah, that's when I realized that this is too much and I really needed to get some help.

Thanks for sharing your experiences with me. Between you and the others who have suffered through anemia like this and shared what they went or are going through, it's been so helpful to learn from those experiences. I don't know that I would have been able to get the Procrit yesterday without being armed with information from all of you guys.

So yes, a big thank you!
June

[Diane12855]

If I were you I'd try to find a hepatologist. Mine told me from the beginning of tx that if my hgb dropped below 10 he would give me procrit. Actually my Internal Med. doctor sent me to a specialist because he knew that he wasn't as up to date on HCV as he should be.

Please don't consider yourself weak. When your hgb is low, your blood isn't carrying enough oxygen to the cells in your body. If there isn't enough oxygen, the cells can't do what they were made to do no matter how much you push yourself.

You need somebody to treat you that knows all sides of tx because of a history of treating many people with HCV.

Diane

[Junebug812]

Nope, haven't noticed people hovering outside my window at night desperate to get in to have a snack, though a lot of loud obnoxious drunks stroll by at 3 in the morning looking for their cars.

I was prescribed 40,000 units, once a week. I start tomorrow hopefully, if it is available at the pharmacy. I have a standing CBC order for every 2 weeks. I did notice that when I was in the 10's, I was tired and somewhat out of breath. I could still go to the gym and ride the bike for 20 minutes (not at my previous level), and I could do some weight lifting, again, not at my previous level but at least I could do something. Now I literally can't even walk to the gym which is only 3 blocks away! It's been a huge difference since I dropped to 9.7. To be honest, I've noticed a significant difference from 9.9 to 9.7 even. When my doc saw this latest drop (the 9.9 to 9.7) he classified it as "essentially no difference in hgb," but why doesn't it feel that way to me? He wanted to just keep on course, don't do anything, and see if it continues to drop in another 2 weeks. Not to be a wuss or a drama queen, but with how I'm feeling I questioned whether I'd be alive in two weeks just keeping on course. Yesterday I walked to the corner cafe to get valentine's treats and things started to go black while walking back and I started to weave while walking. I looked like one of the obnoxious drunks who stroll by every night, only I don't think I have enough oxygen in my lungs to be loud! Not one to wish misery on anyone, I did want to say to him yesterday during our debate about how I feel, that I wish he could see what this feels like, even for just one little walk down the street.

I'm a social worker; I work with severely disturbed children. On Friday I was with a kid at juvenile hall and I almost fell when I get to the top of one flight of stairs. I was out of breath, heaving, and the kid got concerned. I realized that I can't continue at this level and be with kids in the community. I asked my agency to sanction a modification of my duties so that I'm not in the community alone with the kids in case I pass out. Not safe for them. So yeah, that's when I realized that this is too much and I really needed to get some help.

Thanks for sharing your experiences with me. Between you and the others who have suffered through anemia like this and shared what they went or are going through, it's been so helpful to learn from those experiences. I don't know that I would have been able to get the Procrit yesterday without being armed with information from all of you guys.

So yes, a big thank you!
June

[can-do-man]

If not for procrit i would not be SVR as i would have been pulled from tx, like spectda i was in a FDA approved trial that allowed the use of it, those that were lucky enough never to need it don't really understand how much of a help it was to many of us..... Sure not a professional, just someone with experience using it.....

[nygirl7]

I dont know how much he gave you but remember it can take weeks for it to work. One of the things you must make sure of is that your  hemo does not go up over 12 - then you have to back off.  When I started on it one shot a week was not enough two was too many so we ended up doing 40,000 every 5 days. That kept me at 10.5 or so. Believe me going up even a bit will make you feel so much better - its not like going down.

I think (guessing I am hardly any qualified medical professional and certainly dont profess to be) maybe that since the treatment for HCV is relatively new - maybe it's just becoming a more widely common practice to use Procrit to battle the anemia.........my doc knew nothing about it at all and if not for this forum I wouldn't have either.


I have never heard of anyone having any difficulty while on it but make sure you get CBCs done often as possible to make sure you dont go over 12.

PS Procrit WAS a miracle worker for me without it I could not have stayed on treatment and that was at week 2/3 so I would not be SVR today.  And I agree with Bill, let that doctor feels what his chest feels like when you get under 10 then he'll say on please prescribe it for me too! And I doubt you have pernicious anemia - unless you see people hovering around outside your window at night going 'let me in let me in' and you wake up  with a bunch of holes in your neck - the timing would be too coincedental.  ;)

[spectda]

I agree that using procrit (and neupogen) should not be taken lightly and the patient should be fully informed about the possbile hazards of using it.

Although there may be no mention of using procrit in the manufacture's literature, many clinical trials approved by the fda allow it's use. Many treating hepatologists use it (and have been using it for several years) when the only available option could be even more potentially hazardous then the procrit, and many insurance companies will approve payment for it. Also just because the fda does or does not approve a medication or it's use does not guarantee it safety or lack of safety.

We make choices to treat based on how much damage hep c is inflicting upon our liver, our body, our general quality of life and emotional state. All of these drugs we take to eliminate hcv are toxic. Some people may feel they have the option to wait until there are better treatment options that are less toxic, for others the potential risk of not eliminating the virus is even more hazardous then drugs.

Hopefully most of us will inform ourselves of the risks and the rewards of treatment and make our decision on how to proceed.

- Dave

[Junebug812]

Thanks for the info about Procrit Bill. Interesting that it isn't indicated for HCV. Wonder why that is. Maybe that's why my doctor is so hesitant. I don't think he believed me when I told him how difficult it has gotten for me. I'm no lightweight either, but he doesn't know that. I've had a healthy lifestyle all my life but I have bad genes which has caused me to go through a whole lot since I was 11 years old, including learning how to walk again, so feeling as though I'm not tough enough for this sort of threw me a bit. Thanks for your words of encouragement. I don't expect the Procrit to be a miracle worker or that I'll feel normal again. I just want to be able to feel as though I have air in my body and don't have to worry about passing out. Also, I cant afford to stop working and if this continues at this rate, I don't see how I can work, so I'm hoping the Procrit will at least keep my moderately employed!

[Bill1954]

This is the mfgr’s prescribing info page, June; I’m not sure if this sheet is fully inclusive or not:

http://www.procritline.com/pages/prescribe/intro.jsp

It looks from this as though it’s still not officially indicated for HCV treatment-related anemia though. This is likely a technicality, as most knowledgeable GI and hepatologists routinely prescribe it for this purpose anyway. This issue might affect insurance payments, etc.

All these HCV and ‘rescue’ drugs are quite strong, come with their own issues, and shouldn’t be considered lightly. In 2007 (I think) Procrit received a black box warning from the FDA for its association with cardiovascular problems. It shouldn’t be administered to patients with a Hgb > 10.0 g/dL, and it’s normally tolerated pretty well.

According to the mfgr sheet, it’s indicated for cancer tx, renal failure, certain conditions associated with HIV, an perisurgery; I see no official mention of HCV treatment.

From anecdotal reports, absolute drops in hemoglobin below 10.0 g/dL are quite noticeable; along with relative drops of more than 4.0 g/dL over short (like up to 8 week) periods. You experienced a significant relative drop in Hgb; it’s not an issue of being tough; stuff like this would make Special Forces Marines sit down and weep.

Hang in there; I imagine you might feel a bit better once this stuff starts working. You might not feel great, but it should prevent you from getting much worse.

Take care—

Bill

[Junebug812]

@ Bill, I didn't know it is experimental for HCV tx. I could tell by my doctor's insistence that my sx are to be expected and that Procrit probably won't do much for me, that he must not be too keen on it. I have problems talking more than 10 or so minutes now, before my voice starts to give because it's hard to talk and breathe, so he could hear the difficulties I was having explaining to him how hard it's become, so I'm thinking that helped my case. Still, he didn't think a hgb of 9.7 should be causing me anything out of the ordinary for tx. Made me feel again as though I'm not tough enough for this, but my history says something different about me so I need to trust that. This isn't in my head. Thanks again for all your rational and logical help!
June

[can-do-man]

Great news, just remember it usually takes a couple of weeks before you see any rise in the HGB.......... Hang in there.

[Bill1954]

Good for you. I believe Procrit is still officially considered experimental for HCV therapy; the last time I checked, it wasn’t FDA labeled for HCV treatment-related anemia. While it’s now used routinely for this purpose, if the doctor isn’t accustomed to managing HCV he might be hesitant to Rx it.

Good luck,

Bill

[Junebug812]

Whew! That was a bit of work. My doctor has prescribed me the Procrit but I had to really plead my case for it. He suggested maybe something was wrong with my heart because of the chest heaviness but I reminded him I just had a stress test 2 weeks ago which showed I am quite heart healthy. Anyway, after a lengthy discussion and him telling me that a drop from 13.5 to 9.7 HGB over 8 weeks is not really that significant so he couldn't figure out why I'm having these symptoms, he finally said we can give it a go but he doesn't know that it will help me. I get it on Wednesday, so I guess I'll see what happens.

Again, thank you all for the input.

June

[Junebug812]

I very, very much appreciate all the information from all of you wonderful and thoughtful people. My doctor should be calling me any minute and I feel a little more armed, with at least intelligent questions that I should ask.

@ Merryb, I don't think I've had any iron blood work done. The blood work I have done every two weeks is: ALT, bilirubin, hematocrit, hgb, WBC, MCV, platelet, RDW,RBC, Red blood cells count, basophils, eosinophils, lymphocytes, monos, neutrophils, neutrophils, absolute. Are any of those iron related? I am not a vegetarian. In fact, I eat a fair amount of fish, shellfish, some red meat, and chicken. Usually one of those proteins a day, cooked in a healthy fashion. Adequate fruits and veggies, though my diet has suffered since treatment and I have lost 12 lbs in 6 weeks. I've never had problems with anemia so I'm certain my iron is fine. As for seeing an intern, I was told at the start that that is how hep c tx is delivered at Kaiser in Oakland. I could switch to Kaiser in SF I suppose, though I don't know if it's any better. I've been very happy with my GP over the last 8 years. He never skimps on tests, in fact he is very thorough and has always insisted on being thorough. I was hoping this experience would be the same.

[GSDgirl]

Hey Bill, If you meant me I am not offended, I just didn't want her to make herself frantic :-}

[Bill1954]

Be sure to conduct your own independent research; some info placed in patient-based medical discussion groups can be dangerously false, June—

Bill

[can-do-man]

At times my Hepo was kinda impressed with the knowledge that came out of here, though he shook his head at some things overall he was glad that we take tx serious. He was more opened minded about going out on a limb with me...... But then again he was good so his ego wasn't deflated.

Can do

[merryBe]

sorry to hear you are down so low, maybe my 2 cents here will help.

unless the doc has run an iron panel giving you b12 may be a waste of time.
are you a vegetaarian by chance?

here's why I ask: (and mind you I absolutely doubt this would help you)
there is one instance in which B12 may help. B12 is an essential vitamin for the absorption of certain things such as iron. It's normal food sources are chiefly meats, seafood and dairy products. It is also made by the gut, it's that important, the body stores it, it is essential for blood and nerve health, and for rna/dna synthesis, it carries many substances as well, not just iron but vitamin A and more; one might argue it is one of the most important of the B-complex when one studies all it's attribute,
but on a vegetarian (vegan diet particularly, lactovegetarian not so much as the dairy contains B12) folks can get very low and that can cause pernicious anemia,

However, unless you had your iron checked and HAVe NO available free iron (free ferritin) and also if he ran a B12 test and that was low, then and only then would it be wisdom to treat this way and wait on the procrit. (I doubt this would work for you, but without knowing all the circumstances and labs who can really say.
Without B12 you cannot make new red blood cells...but as I said, this scenario is almost certainly NOT going to help you....although an newbie intern might think that it would.
He would not be the first doctor of patients in here who treated for pernicious when in fact it was unwarranted and even dangerous.

Look, the key thing here is that your tx is being producing hemolytic amemia. A totally different issue. True you MAY have both types of anemia simultaneously, but we KNOW you have hemolytic because the ribavirin destroys red blood cells. The bone marrow cannot keep up with the demand, the riba stays in circulation and causes more and more blood cell death, and that's why the Procrit is added, to stimulate the marrow to work harder. The only other approach is to lower the riba dose, and as you do that you decrease the chances of the tx working, so most docs go the procrit route.

Perniciuos anemia is simply caused by not enough iron being in the system, and can be treated easily by the addition of iron, iron rich foods, and/or B12 supplementation.

Hemolytic anemia is caused by the destruction of red cells due to the chemo therapy and no amount of iron will help that. In fact people often have too much iron in their systems with hcv, and get more overloaded during the tx because all that iron from the red blood cells that have died is still floating around in the blood (and depositing in the liver). Your body holds on to iron with an iron grip (pardon the pun, perhaps that's where the idea of an iron grip came from is how iron behaves.)

So, what you need to know is 2 things, first, you are dealing with Hemolytic anemia in all likelihood. Please PM me your iron labs for further clarity.
Second you are dealing with Kaiser, and an intern at that...it explains a lot...the normal route is to see a highly trained specialist, a hemotologist, who would know these things.

Kaiser is notorious for not wanting to give patients expensive drugs. (the procrit everyone is mentioning cost 5-6 thousand a month, so the longer they keep you from getting it the more money they save.) ( I had Kaiser, and have friends whove had it, and we all experienced the same BS from them!! They are good on the little and preventative stuff, but horrid on the expensive stuff.

Third, any cancer patient at your hgb would already be on procrit, it's not even legal for them to deny you it, even medicare patients get it when they hit 10 and medicare is cheap..but not as cheap as Kaiser can be.


I would read up on procrit so you know the risks, then ask for your iron panel and B12 test results, if he didn't do them and gives you a blank stare, then he's clueless, get another doctor asap, and tell him a DOCTOR said it's malpractice to withhold procrit from a person with your HGB who is treating. My doctor told me that, so you heard it from a doctor. Tell him that's what a doctor said. If that doesn't get him off the dime I would see either a hemotologist (blood doctor) or see an oncologist, whoever you can see quicker...because both those specialties will know enough to put you on the procrit.

Why are you treating with an intern anyway? If it were me, I would put in a call to his supervisor. The doc that supervises him could also get him off the stick quicker than waiting to see another specialist. If it's anything like Kaiser where we are (portland) it can take weeks to see a new specialist in that system, and you don't have weeks to wait.
If he refuses, ask for an emergency second opinion. As I said, if you bring up the word malpractice, then Kaiser gets off the dime. I had to do it one time, or the guy would have never let me see the specialist, but as soon as I went into legal mode with him I got right in.  It's a shame any patient has to do this, but Kaiser doctors make a percentage, their saleries are tied to procedures, so the less they spend on you the more they make.
It is fatally flawed therefore, and I'd suggest you switch to a different health care system as soon as you possibly can.

mb

[GSDgirl]

Hi, you are right where I was in TX and your hemo is right where mine was.  I knew nothing about procrit and getting copies of my bloodwork.  My Doc was a gastro who I might have seen 4 times, he never red flagged when I dropped to 9.3.  I just thought my body was weaker & it was.  I was not working I did not have to push myself at all.

I am NOT telling you to not get the procrit but if you can't as quick as you would like, please don't get frantic.  Mine did come back up and when I finally learned why I was so wiped out I was pretty mad at the doc and finally saw another one at the very end of TX.

I hope you feel better and I hope you get the procrit

[nygirl7]

Again June you are NOT being weak.....I'd like to give that doc a good ole' case of the hemolytic anemia and see what he has to say after even a few weeks! Dont ask me why some of them dont know, but boy I and a lot of the other guys in here understand the aggravation of it all............you aren't alone.

[Junebug812]

Nope, no allergies or asthma. I've never had respiratory problems. I had a stress test recently as my GP wanted to make sure the chest pain wasn't due to heart problems. I was told I'm in excellent shape. I know this has to be the tx, and from what I can tell from reading this forum, it seems to be a result of the low HGB.

Good luck with the Procrit. Please let me know how it works out for you.

[Junebug812]

@ Nygirl7, no, I wasn't planning on mentioning where I'm getting my information. And yes, I'm learning that some of what I'm reading is conjecture related to research. It's all helpful nonetheless but I realize not always applicable. Just seems to me that my problem isn't all that out of the ordinary and I'm not sure why I should have to suffer with this when there is something that can be done unless my having one kidney is a barrier. Damn that transplant! Didn't even work!

@FIguy, no, I knew you weren't suggesting the B12. I was just musing at what you heard. I do have insurance through Kaiser and so far it's been good in terms of not having to incur the expenses of tx.

@ Bill, I will definitely ask about the one kidney thing. I know since the transplant, I've had to be careful in all sorts of ways when it comes to my kidney. I've led a very healthy lifestyle, especially because of having only one kidney and severe scoliosis. I've managed to adapt and up until starting this tx, I've been very athletic. I guess that's making it that much more difficult to adjust to not being able to walk a block without breathing laboriously and having things start to go black around me. So when my doc tells me that's just a sx, I wonder if I'm being weak.

[uncledudeness]

nygirl7 hit the nail on the head. when i mention hep c forums to my med team, they roll their eyes. so far, i have gone toe to toe with them. i like to finish their sentences, just to tweak them a wee bit.

my NP wrote the script for Procrit for me when i was at 11.4, she said she wanted to get the ball rolling. well i got rejected by BCBS. a week later i was back in her office for the "how to" part of Procrit. i would be insistent on the Procrit issue. i am hoping it helps my fatigue.

as far as the sides you have; i have the identical dry cough, scratchy throat and what feels like bronchitis. i do have allergies and asthma too....right, do you have any allergies or asthma? if so, it could be irritating you condition...hang tough and tell your GI you want to go on Procrit...if he says no, say goodbye....and don't forget to get a copy of your file for your next doctor. i did that and they perked up a bit. there is also a patient advocate department at every hospital. i called them and my team started returning my phone calls....you have to assume the role of patient advocate for yourself....

good luck June

[nygirl7]

Do yourself a big favor and do NOT mention that people on an internet forum told you anything.  That will  make his godlike head spin about in circles (mine actually laughed at me, I mean laughed hard).  Turned out that everything he knew was outdated and the folks here knew much more. (Of course always double triple check ANYTHING and dont pay attention to things that aren't thoroughly studied and proven tpieces - we like to discuss stuff that hasn't been proven and that should not be taken as anything except a bunch of heppers talking about things that might someday be!) At the end of treatment he admitted I knew way more than he did.......that was all due to the guys in here.  It's sad but it is oftentimes very true.

And Procrit - that was a crucial thing in my successful treatment.  It takes from 2 - 6 weeks to work it has a HUGE job growing more RBCs in your bone marrow - it's not some miracle shot so you want to get working on it FAST.