Went in today, 12/17/10 W., for a CBC and HC (Viral Load) blood draws. Viral Load won't be known for a 'couple of days.' At the moment it doesn't matter, because treatment was stopped anyway due to a number of falling markers. I had worries about Platelet count, last two being 51, 53, and then today 43. Still that wasn't the big problem. WBC went from 2.2 the blood test before last to 1.5 today. Also Hemoglobin in the same period went from 12.6 to 10.8.
They said they were worried about infection. Welllll...
I'm scheduled to come back in a month to 'see if the numbers improve.' I was disappointed, I didn't immediately give up, but I was digging for something, maybe a bread crumb of sustenance for the coming month. So I asked, What difference does it make? You've had blood numbers since before treatment started, they've gone down. I come back in a month, if they have gone up, treatment starts again and they go down again. Crickets chirp. Or they don't go up and treatment restart. More Crickets.
You see, somewhere in there someone says, Ya, but ...
2 factors = High
RDW and ABS Meta = no idea what those are but can bet being high is not a good thing.
VL = still unknown. Only of interest to see if treatment was working at all.
Is this any indication of outcome in future treatment?
In trials of the two main experimental drugs isn't treatment in conjunction with Peg&CoPeg?
Is there any drugs to raise WBC?
There are lists of foods that are supposed to help. Among them Orange colored foods, melons, carrots, etc., fruits .. I was told not to eat oranges, citrus, I don't know why. Is it because of the Vit C? To much acid? Is suppose to upset those with nausea?
Any comments at all on any portion is appreciated.
When I asked what difference does it make (if after a month all these numbers go back up, they will go back down when treatment starts again), she said we will be able to tell if it's the treatment. I didn't ask, but if it's not the treatment pulling these numbers down then what could it be???
In my limited, guessing way, can only think if not the treatment it's further collapse of liver functions.
I don't know much about platelets so I can't comment on that. What I do read about what you wrote really alarms me. I would get yourself to a second opinion as fast as you possibly can and make sure it's a second opinion from a hepatologist from a university hospital or some such thing.
I find it hard to understand that your doctor would completely stop treatment to see if it's the treatment drugs bringing down your white counts and hemoglobin. A doctor who is experienced treating Hepatitis C would expect this, that your white and red blood cell counts will take a hit. That is such a common occurrence on treatment. And WBC?? Why isn't your doctor looking at ANC? It's the Absolute Neutrophil Count that's the watched marker for white blood cell count while on treatment. Hemoglobin..what's wrong with 10.8 hemoglobin if you're physically tolerating that? That's not an alarming number, it's simply a number to watch. It is getting down there but alot of us hovered around that mark while on treatment. That's getting down there for a man, yes - how are you tolerating that physically though? Time to talk to your doctor and insurance company about introducing Procrit to bring up your hemoglobin if required - it takes a few weeks minimum to kick in.
And you're in Week 10/11 of treatment! Your doctor didn't consider REDUCING treatment drugs instead of outright stopping treatment drugs?? Not that I advocate reducing treatment drugs at this stage of treatment but she's gone right for stopping completely? And coming back in a month? What's that??? Why not testing weekly and monitoring? And frankly, reducing treatment drugs in the first critical 12 weeks is like a last resort and I don't see that you're at that unless those who know more about platelet counts can chime in with better info in THAT regard.
And YES, there are rescue drugs for white and red blood cell counts. There is neupogen for white blood cell counts and it works very fast to bring up white blood cell counts. I would talk to your doctor about getting you on neupogen rather than reducing treatment drugs particularly in that critical first 12 weeks and then until you're well into treatment. Reducing treatment drugs is always last resort. For red blood cell counts - hemoglobin - there is Procrit, the rescue drug for that.
I have to say, the various things you're saying seem to indicate your doc is not very experienced in treating persons with Hep C or doesn't know her stuff. That's my personal observation and I would definitely get to a second opinion and in the meantime, approach her about getting on the rescue drugs instead of reducing treatment drugs. And man....I'd really strongly suggest you consider that second opinion.
I think Trish got it right, you really need a second opinion. My platelets were in the 40's for most of my 48 week tx. Even got as low as 29 and my hemoglobin went down to 8. We never dosed reduced or stoped tx.
I was being tx by a hepatologist that also specialized in transplants.
Wishing you the best..........
Another option you might consider is asking for a referral to a hematologist; they might be more comfortable balancing borderline blood values with the appropriate rescue drugs. While some of your blood components look a little edgy, nothing there appears to my non-professional eye like it would warrant treatment discontinuation. An aggressive, experienced physician will allow platelets to around 25-30K; unless you have other considerations that we’re not privy to.
You didn’t mention how long you’ve been off the interferon; can you call tomorrow and ask for an emergency consult with a hematologist/oncologist?
I hope everything works out in the long run—
“Is this doctor a professional?”
Was that comment necessary? What do you think? That we have legions of board certified non-professional physicians running around? Sheesh…. If you don’t have anything of substance to add, it’d be much better to remain silent.
Dr. Arora suspects that sleep deprivation and burnout are part of the problem. Doctors who behave unprofessionally, she explains, might have troubles of their own.
"There's a lot of good data to suggest that people who are sleep-deprived in these settings do have more staff conflicts and burnouts and could possibly even further exacerbate unprofessional behavior," she says. Health.com: What to look for in a medical specialist
And there are more serious behavioral problems -- aside from laughing at patients.
The survey included questions about behavior that is frowned upon, such as attending a pharmaceutical-sponsored dinner or social event (69%), as well as behaviors that are considered egregious, including falsifying patient records (13%), and reporting patient test results as "normal" when unsure of the true results (10%).
"Those are examples that would compromise patient safety," Dr. Arora says.
An unprofessional demeanor in residency could spell trouble for your entire career, she adds. Research has shown that those with poor ratings on professional behavior early in their careers are at greater risk of disciplinary action later on.
I finally got the name of the floor doctor directing the worker bees .. Now I have 5 working days to find a hepatologist at the hospital, if any (I'm broke, no insurance.) Arrange an audience, make some case with my limited knowledge, and get them to try the rescue drugs mentioned, get them to properly fill out a script for, at least, Peg so I can continue until ... oh, haha just looked up the prices for both Neup.. and Procrit .. there is zero chance they will pay for it and I can't even afford to log on the internet (using someone else's connection.) Well that was fun. No seriously, thank you all for the information. It is useful, I desperately need to know this stuff. Plus it helps me work though these situations. Unfortunately this one seems a dead end.
I'll take my pills tonight and tomorrow in case someone has another alternative suggestion or can make this one work.
The big reason I was given was the WBC of 1.5, the Hemo., and even PC were mentioned but more as support not the main reason. At least that's the impression. Not like we have discussions or anything is ever explained (well once), I'm always left scrambling to come up with a question to ask on a subject I know very little about.
So, maybe it comes down to WBC, without chance of rescue drugs. Any serious chance of spontaneous recovery ?
Thanks, you guys tell me what I need to know, that's the most important thing.
Any doctor that says dont eat oranges makes me wonder,if this is who told you...grapefruit yes.but oranges are ok.My whits dropped to 1.0 and still they kept me going on TX...my doc says they are letting more go lower on the white blood counts now more than before.
very sorry about the jam you're in - you don't mention what country you're in but, hey, I think I can guess...
if you need some evidence to educate the interns, try printing out Table 3 from the following article
"Using Pegylated Interferon and Ribavirin to Treat Patients with Chronic Hepatitis C"
(note free access tab on right)
Table 3 which spells out dosing reduction guidelines is here :
This is all pretty mainstream, conservative, SOC management. Note if WBC drops below 1.5 they advise reducing peg 25 to 50 pct, not discontinuation. Likewise for platelets less than 50 but "only after an attempt to maintain the blood count with erythropoietin". Your Hemo has not yet even reached the suggested dose reduction cutoff of 10 and at that point only an rbv reduction is suggested.
At least make sure you've got accurate VL data so you'll know how ifn-responsive you are for the next try.
Thought I'd throw this your way in the event you are able to continue treatment.
Most pharmaceutical companies run programs aimed to facilitate the accessibility to needed medications for patient who are in financial difficulties and are not eligible for Medicare, Medicaid or private insurance. These programs have different requirements and require the physician to register the patient.
Amgen: Safety net Program for Neupogen®
Table of Contents
SAFETY NET ® Program for NEUPOGEN®
Products covered by program: NEUPOGEN® ( Filgrastim ) Program is designed to assist those patients who are medically indigent (patients may be uninsured or underinsured). Eligibility is based on patient's insurance status and income level. To enroll a patient, providers should contact the Amgen SAFETY NET® Program by calling (800) 272-9376.
Reimbursement Connection® Hotline: 1-800-272-9376 for Aranesp®, Neulasta®,EPOGEN®Sensipar®Enbrel®Kepivance®,Kineret®
Ortho Biotech Procrit Line
Table of Contents
Procrit Line Ortho Biotech
Products covered by program: Procrit® (Epoetin alfa) for non-dialysis use, LEUSTATIN ® (cladribine) Injection Physician requests should be directed to Ortho Biotech Procrit Line (800) 553-3851
No other considerations. I have had psoriasis for years, otherwise ... BP was 172/85 today, and as far as I know have no other diseases, am overweight 250 @ 5.7 ft. (like to think 20 or more pounds is water (edema) but have no idea).
The med's are just kickin my counts down. WBC is the big one, now. Will find out about VL prolly Mon. If it didn't come down, guess none of the above matters to much.
What a mess. I have to make an argument, tomorrow, to continue based on what I know now, today. Waiting until Mon. for VL results, will make it nearly impossible to track down, if possible, someone to make a case to before time expires on the med reorder window.
WBC is 1.5
Normal is 4.5 to 11.0
Is 1.5 to low to continue or not. There is zero chance of rescue drugs.
Absolute Neutrophil Count ... isn't on the CBC, there is ABS SEG NEUT = .24 (low)
and ABS BAND NEUT at .18. (in range)
The Seg and Band Neut are 16 and 12 % respectively. The calculators online use units of measurement that don't equate to units used on the CBC blood test, 10^3/UL. So no idea. Of course the hospital didn't mention this at all.
willing directed me to a good site that gives cutoff points for various things .. it is suggested at WBC 1.5 reduce dose, at 1.0 cut off. There is some little wiggle room on WBC now to convince them.
Maybe ANC is the hangup, don't know. Something to ask.
willing is your man. If they're going on WBC and that's the language you have to work with, then willing has given you the dialogue you need to be talking in their language.
I'm sorry if I made you feel worse about your situation with my strident response. I just want you to have good care. Hang in there, keep asking questions and keep advocating. A number of us have had to go in armed with our own information and plead our cases to our treatment teams. Good luck with all this, James.
I would assume and moreso, hope .. that the blood tests you're getting are CBC's. Complete Blood Counts. On those CBC's, there should be a line item for Neutrophils and may say Absolute Neutrophil Count.
Most publications you'll see dealing with treatment talk about ANC and not WBC. I would consider asking your doctor what your ANC is.
Here is a reference to a Canadian document. This is a document that's prepared on a regular basis by Canadian gastroenterologists/hepatologists who come together to determine guidelines for HCV treatment in Canada and produce what's known as the Canadian Consensus Guidelines.
It's actually written in plain language that your interns could understand. It's a 2007 document, however it's beyond what your docs are doing in that you never got a 4 week PCR and ideally, you should have. It clearly talks about the response to dropping platelet levels, ANC and HGB while on treatment for Hep C. WBC is not even mentioned. They continually refer to ANC as the marker to go by.
It addresses treatment approaches when faced with dropping HGB, ANC and platelets. Nowhere does it come close to recommending stopping treatment at the levels you are currently at, neither for HGB, ANC or platelets.
This is a document that helps you understand your blood test results - your CBC (Complete Blood Count) tests. You'll again note the emphasis on ANC and there is a method to calculate it, however your CBC should have a clear indicator of what your ANC is. I hope this helps you understand your blood test results. It also mentions that the ANC is the marker to watch for your susceptibility to infections, not your WBC. Perhaps...you can get them talking in ANC and not WBC. Perhaps.
A document re understanding blood tests out of the UK - again, supporting that it's HGB, platelets and neutrophils that are the counts to watch:
A fact sheet on the importance of adherence to therapy:
A study that shows the differing viral responses at various adherence rates to therapy in the first 12 weeks due to physician-prescribed reductions and supports the importance of adherence to optimal dosages throughout treatment - indicating yet again that reduction/stoppage is the court of last resort:
"Neutropenia was defined as a peripheral absolute neutrophil count below 1,500 cells/µL. During therapy, neutropenia was assessed at levels of 1,000, 750, and 500 cells/µL, the usual thresholds for dose reduction of interferon or discontinuation in therapy of hepatitis C. Episodes of infection were defined if there was a confirmed (by bacteriologic cultures or positive radiograph) or suspected infection, which led to either oral or parenteral antibiotic therapy during or within 4 weeks of stopping therapy. Infections were categorized as mild if not requiring hospital admission, intravenous antibiotics, bed rest, or discontinuation of antiviral treatment. Constitutional neutropenia was defined as the presence of an absolute neutrophil count of less than 1,500 cells/µL before starting treatment in the absence of cirrhosis histologically, splenomegaly (on the basis of abdominal ultrasound) or thrombocytopenia (< 150,000 platelets/µL) or other known cause of neutropenia."
"In this analysis of neutrophil counts among 119 patients treated at a single referral center, neutropenia was not used as an exclusion criterion and therapy was safely accomplished despite decreases in neutrophils below the usual levels that lead to dose reduction or drug interruption. Bacterial infections did not occur in neutropenic patients, and the only severe infection that was identified occurred in an elderly patient with preexisting cirrhosis. Of potential interest, the only baseline measure that predicted subsequent infection was low reticulocyte count. We are unaware of other information linking reticulocyte count to subsequent infections. Nevertheless, the association was strong and deserves further investigation."
"There was poor correlation between total white blood cell count and neutrophil count in patients with neutropenia, indicating that measurement of absolute neutrophil count instead of total white blood cell count is necessary in monitoring therapy." -
-this means that WBC is an unreliable indicator when monitoring neutropenia.
"In conclusion, neutropenia is frequent during treatment of hepatitis C with interferon and ribavirin, but it is not commonly associated with infections. These results suggest that patients with constitutional neutropenia probably can be treated safely and may not require dose modification. These findings support a revision of current criteria for exclusion and dose modification based on white blood cell counts in the treatment of hepatitis C. These modifications would expand the proportion of patients who could receive interferon-based therapy for hepatitis C. Because this was a descriptive study of limited sample size, it did not allow for identification of a specific cutoff value for neutrophils that can be considered safe. However, in the absence of other risk factors for bacterial infection, neutrophil counts of as low as 500 cells/µL are likely to be safely tolerated during interferon therapy. These criteria need to be validated in larger, prospective clinical trials."
I would consider asking them for your ANC, since that's the language hepatologists and studies talk in when monitoring neutropenia during HCV treatment. Get them to talk the language of HCV treatment if you can.
This is a bit of a mishmash of information - and I hope some of it is helpful to you in advocating for a) more appropriate testing b) continuation or, at worst, reduction of INF rather than complete stoppage of both INF and ribavirin, a completely inappropriate approach in my non-medical and personal opinion.
Your initial post referred to treatment 'failure.' Having hemotological side effects is no failure, it's an indication that the treatment is taking place. I know that within the charity system of treatment, there are no resouces for the rescue meds like procrit for low hemoglobinor neupgen to stimulate bone marrow to produce those infection-fighting neutrophils. I'm not sure why they stopped you, though. They could have reduced your dosage instread, increasing dosages when bloodcounts recovered. I stayed 'crashed' through 2/3 of TX and had my interferon dosage reduced along with all of those blood draws. I would be told to dial back the interferon pen to .4, .35 or given another smaller pen. Riba was never reduced but I was rarely on the originally dosage of IFN after the first few months.
I recall finding some guidelines online for dose reduction to be done for the patients safety. Wish I had it for you, but you may need to search for those guidelines yourself. There's a good chance that it's in willing's link. You should not be stopped, just temporarily reduced.
That is correct can-do-man. Thank you for making that clear. There ARE patient assistance programs that will provide both Procrit and Neupogen to those without drug coverage. It entails working closely with your physican but help is available.
James I was coming on to say the exact same thing. The patient assistance programs are MARVELOUS - without them I would not have had enough drugs to complete my course of treatment. They try to make it as easy as possible to help you too - no big long forms or hassles......
Your doctor (using that word lightly) needs an education. This is crap. You should not be taken off treatment this is exactly why we do have rescue meds that obviously he's never heard of. Taking you off tx for a month then putting you back on makes no sense at that point it will be too late.
You have to go for it - you can't give up. This happens to a lot of people in here, believe me (doctors screwing up cause they don't know anything). YOU HAVE TO DO THIS. You can't give up yet. We won't let you. It's time to be tough - tougher than you want to be but you have to do it. If I could help you do it I sure would.
DO NOT GIVE UP IT'S TIME TO GET TO WORK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We are all going to be watching so let's get going! Make us proud little grasshopper you can do it!
It's good to post the patient assistance contact info over and over and over. I did not need the assistance so don't know much about it. Any idea how long it takes to get started with one of those programs?
entering a WBC count of 1500, Segs/Neut 24 and Bands 18 gives an ANC of 630. Typically, the cease and desist alarm goes off at 500 (cutoff for severe neutropenia; see eg wikipedia article on neutropenia). Per the above article you are in dosage reduction range but not at discontinuation (and definitely in range to add neuopegen if you can get it!).
sorry, I didn't notice that in your post above you gave two different values for the segs and bans. For your ANC you want to know the the percentage of WBCs that are mature( segs) or immature( bands) neutrophils.
If those percentages are 16 and 12, then your ANC is (16+12=28)% * 1500 =420 and you are in fact in STOP NOW territory.
The ABS SEG and ABS units should be in thousands of cells /uL or mm3. For purposes of calculating ANC you want the abs and seg values shown in units of percentages on the CBC report.
another thing - though I expect they already warned you about this at the hospital. Checking the units column on the CBC report will make clear what the band and seg percentages are for calculating your ANC, but either way *your immune system is near a critical edge*: avoid crowds, sources of infection etc. etc. Someone recently posted they contracted spinal meningitis because of tx -nduced neutropenia.
I'm really sorry to hear what's happening to you James, but hang in there.
you got some great advice above, and I'd definitely take what you've learned back to your docs were I you.
also, spend a few days on the phone if you must, the drug assistance programs are there for people like you...you just have to be persistant sometimes with phone calls and making sure your docs forward whatever clinicals they want to them. I'd be one the phone each day with these companies.
to answer your question that no one answered: the reasoning behind no oranges is flawed. The real issue with citrus (any kind but particularly grapefruit) is what they do to certain cascading chemical reactions in the body.
to be sure we all need vitamin C in our diet, and it is helpful with viruses, fatty liver disease, diebetes and more...it actually hels the liver in several ways...however, it can do some bad things also. The biggest concern is iron overload. Oranges, or ANY type of vitamin C, or even vinegar and other acidic foods help iron to break down and absorb. Since iron overload causes excess oxidation and leads to liver cancer you really don't want to add acids to your meals, especially ones that contain a lot of iron...meals with meat or dark leafy greens in them would donate more iron to your body if you include High C in those meals.
However, eating oranges by themselves would be very benficial, since then you'd get the benefits without that risk.
However, the other issue with C is that it effects the P450 cascade. Meaning the cytochromes that metabolize the drugs you take can be altered by the acids.
What that translates into is possible interferences that can be harmful.
Some drugs may work far less well, while others may not clear as they should, and hence build up in the system. Because of these 2 concerns my clinic advised me not to take it. I opted to be sure and get some, but to do it in ways less likely to cause problems....like eating oranges only for snacks, and foregoing grapefruit altogether.
There are some sites advocating high dose C to help control the viral load of hcv, but they are really not versed on the chemistry involved or they would not do so. oo much C can cause oxidative backfires as I understand it. Bottom line is, moderation in all things, and a little homework never hurts.
As you know i have alot of respect and value your opinion alot. But i have to say if my doctor went strictly by the book or the guidelines that you read i would not be looking at a great chance at SVR. Shoot i would have never been able to finish tx.
My ANC and platelets bounced around all through tx. Only needed "rescue" drug for aniema as my HGB was the only thing that didn't bounce up and down.......... Best to you
With a phone and access to a fax machine and a Rx from your doctor it can be done in a couple of days. My first tx in 2005 not all insurance would pay to extend tx or cover procrit. When i got close to 48 weeks and knowing my best chance was to extend to 72 weeks my dotor suggested i check into commitment to care, with one phone call and a Rx they were willing to send me a couple weeks of meds if needed.
I was lucky and had no problem with my insurance so i didn't need help..... And yes i agree,
It's good to post the patient assistance contact info over and over and over.
hi cando - hope you're doing well. I agree completely regarding persistence and many here have successfully sailed to SVRs with HGb under 10, low platelets, ANC under 1 etc. However I believe ANC under 0.5 is getting pretty risky - that's why it's important for James to check the units on that CBC report. If the percentage segs and percentage bands are in fact 16 and 12 then his ANC is 0.42 and I believe it would be hard to find a Dr. who wouldn't stop at that point.
500 is the cutoff for severe neutropenia. The study Trish quoted mentioned that as a cutoff
"However, in the absence of other risk factors for bacterial infection, neutrophil counts of as low as 500 cells/µL are likely to be safely tolerated during interferon therapy."
and that review of dosing adjustment/cutoff guidelines I linked above also gave 500 as the discontinuation point.
Feeling much better after this tx compared to the first round. Looking over some cbc's from this last tx it looks as if my ANC only droped to .05 a few times but for the most part it was between .08 and 1.3, what is strange is how it bounced around in a short time period, from .05 then 2 weeks later it would be 0.8 then back around .06 then up to 1.3 and this was using the same lab for testing.
Same with my platelets, they went stright down and got to 29, then started climbing and was back up to 62 in a month. Then seemed to level off and stayed in the upper 40's.
The Canadian Consensus document above indicates dose reduction below 0.5 neutrophil count and that discontinuation can be delayed until 0.3. I can't cut and paste from that document or I would. It's on page 32C. I recognize those cutoffs are open to debate but not the first time I've heard that a lower neutrophil count is tolerable and that infection risk for those on Hep C treatment is less than that for those on radiation / chemotherapy for cancer at the same neutrophil level due to different physiological responses to therapy per each treatment.
Found out the name of 'my' doctor. He is an Internist. He comes in to UMC on Mon. mornings and Wed. afternoons.
Called the head nurse at the Clinic. The short is she'll make my case to him Mon. morn.
The long of it is. What is it with me? I can't seem to make people understand what I'm talking about. I tell her I'd like to ask the doctor about reducing dose to extend treatment, maybe long enough to sign up for PAP for Neup, to maybe bridge over until counts come up ... Of course I can't say it that smoothly. I end up being told, why didn't you ask when you were in yesterday. I said, I'm the patient I didn't even know I had this disease until a couple months before treatment and I'm only in week 10. What do I know about WBC? I'm not the doctor. She says That's right, he made the decision our guidelines say at 1.5 is cutoff.
"That's what I want to ask about. According to 4 or 5 online (so, a little exaggeration, thanks willing :) reputable, hospital, sources. The recommendations is @ 1.5 reduce dosage, 1.0 is cutoff."
The our guidelines thing again. AND some mumbo jumbo about remember when you came in and were taught how to take the shots and med's. All the information you received? ... Ya, I read it all, but have no idea what part you are talking about.... It says we have the right to refuse or end treatment ..
A series of explosions went off in my head
Basically it went down from there. Somehow to her I came across as challenging the doctor's authority to make treatment decision, the hospital's ability to end treatment, my ability to 'schedule blood draws', got snippy when I said I'd do the leg work on PAP for Neup (the doctor still has to approve it the hospital will do the 'leg work' you don't have to do any leg work.) Holy Crisco Lard.
Finally she said I can tell him what you said but it won't be until he comes in on Mon.
(meaning Mon. morning is it, if she fails to present, has a snarky attitude about it, etc., etc.)
"Fine that's all I want is someone to understand my point and present it fully, maybe if I get lucky have a few words with the doctor. This is guidelines to you, to me it's my life. I HAVE to try to pursue these two possible alternatives."
They already KNOW I'm a pain .. I try to present a coherent argument, try to be polite, albeit persistent, especially when what I'm hearing is not answers. Like last month when this very same person said I had a three month supply of med's which sent me flipping out for a day proving her wrong. This is the HEAD Nurse in that Clinic who apparently has a fundamental misunderstanding how they order Hep C meds in her own dept. Crimmers.
One last, at one point, she let slip the reason for waiting a month is "sometimes the body develops a resistance to the effects" .. of the medicine. The take-away is next time around maybe the WBC and some others won't crash so badly.
All you people are great. You gave me something to work with. No matter how this particular situation works my much needed education continues. Now have keyword lists, the URL and physical addresses to info and companies, and collate other tidbits of advice and info.
Thank you all !
I've cut beef and pork altogether, just eat skinless chicken/turkey not fried and in small portions. That much iron is cut out. Guess mostly it comes from the few vegetables I do eat. I fix large salads with standard tomato, cuc's, bell pepper, AND oil and VINEGAR. I take it that's a No-No?
While following up on some of Trish77's comments, ran across that site. Was unsure if the CBC units corresponded to the ones there, in turn making the result suspect. Plugged in the numbers anyway, came up with the same 420 and realized I had no idea what that meant.
Your explanations cleared it up.
It appears that's the REAL reason why they pulled me.
I don't like it, but you know how that goes ... anyway it has the advantage of being a REAL answer, understandable and final.
Yes, it was a good explaination Willing gave, I doubt any of us knew about that little formulea. Darn. It does sound like your clinitians want no challenges.
For what it's worth, I got a second opinion....one of my docs former students....he did point out why my doc might be wrong, and the fact that a former student pointed out different research he was ignoring did cause him to adjust and allowed me to continue treatment. Obviously the squeaky wheel won't always get this grease but as they say nothing ventured....in any case, it is your LIFE as you pointed out.
I still eat pork and occasionally beef...the culprit is the proportions and the combos.
So yes, vinegar and oil is a NO NO. Vinegar, like citrus, makes the iron in foods more soluable and ergo more absorbable.
I eat green peppers all the time, but not with acids.
The thing about the iron in the green pepper, tomato, or other veggie high in iron is that they are more bound naturally, meaning they don't absorb very well on their own....so you can eat all you want....just don't use a vinegar dressing on them, choose something that doesn't change their bound iron into available iron.
"One last, at one point, she let slip the reason for waiting a month is "sometimes the body develops a resistance to the effects" .. of the medicine. The take-away is next time around maybe the WBC and some others won't crash so badly.
Sadly....no. Not at all. Your blood counts may increase because you're not taking the drugs anymore but you don't develop an "immunity" to the treatment drugs bringing your blood counts down the next time you start them simply by staying off of them after having been on them. That's absolutely preposterous. Sort of sounds like she may be unsure of her position to stop your treatment for a month and came up with that as an explanation and it's a poor one.
What's recommended is to take rescue drugs before reducing dosage in an effort to avoid dosage reduction - or reducing dosage if you're at critical levels and also introducing rescue drugs in an effort to bring you dosages back to prescribed levels. In fact, if you take a look through the various documents, adherence to drug therapy particularly in the first 12 weeks is critical and adherence to maintain as close to 100% of the dosage is recommended.
""Fine that's all I want is someone to understand my point and present it fully, maybe if I get lucky have a few words with the doctor. This is guidelines to you, to me it's my life. I HAVE to try to pursue these two possible alternatives."
I hear you. Some of us have found that a little "face time" with the doctor directly can make all the difference. That the doctor may see things differently than the nurse and he hears a little differently than a nurse does - perhaps. That happened with me. I had a great nurse but when faced with my first dosage reduction of ribavirin at Week 13, I wanted to get procrit added to the mix immediately to keep my hemoglobin above their cutoff of 10.0 for dosage reduction (trial mandated) and she disagreed. We talked it back and forth with us both maintaining our position and she finally said she would have me speak to the doctor directly which I was quite happy about. I spent a frantic weekend researching, talking with folks on here to get some input and preparing my case. When I talked to him to explain what I wanted and why, he was in complete agreement and started me on procrit right away. My nurse was quite fine with that. Yours sounds like a control freak, my nurse was compassionate, supportive and passionate about her patients' care and didn't need to be right about everything and was willing to listen.
I do understand about white counts being at vulnerable levels, just differently. I hit a point where my white counts dropped into danger zones but that was much further along in treatment than you are. Not my ANC, my CD4 and lymphocytes. They put me on antibiotics to protect me from getting infections. They reduced my interferon for 7 weeks starting at Week 25 and I constantly advocated for neupogen and my doctor refused me this time - they were testing my blood weekly to determine where I was at and finally he agreed when my white counts didn't rebound enough over that 7 weeks to bring up my white counts enough to resume full dosage. The day after I took my first injection of neupogen, the trial I was in was pulled at all treatment centers and that was that and treatment was stopped at Week 34 for me. I was not in your position, however. My liver damage was not far along and I had time to come back and fight another day. I hung in there and fought as long as I could and considered switching out of the trial to continue treatment with another treatment team but with a CD4 count of 92, I figured I was really pushing it and after heavy deliberation, conceded and accepted it was end of the road. Having said that, I got my SVR just the same and I am done.
Big difference between my circumstance and yours, not the least of which is that I'm in Canada. What we have are our own opinions and experiences. I wish you luck sorting through everything, James and determining what is best for you and in advocating for yourself.
Just wanted to say I'm sorry to hear about what is happening to you. It's outrageous and must be causing you a great deal of emotional stress. I'm amazed at all the wonderful advice and support people have given here and I really hope you can get through to the real doc. Hang in there, I believe one way or another you WILL beat this dragon, and this system. Epi.
You'd think by now I'd have learned not to argue with Trish and Can-do... Trish is quite right about 0.5 not being unanimously accepted as the discontinuation threshold and Can-do makes a very good point about the variability of the blood markers. Here's the relevant section from that Canadian best-practices review:
"Although the package inserts for both PEG IFNs (Pegasys RBV, Hoffmann-La Roche Ltd, Canada; and Pegetron, Schering-Plough Canada Inc) suggest dose reductions if the neutrophil count falls below 0.7×109/L and recommend discontinuation if the neutrophil count falls below 0.5×109/L, experts suggest that dose reductions are not necessary until the neutrophil count falls below 0.5×109/L, with discontinuation if the neutrophil count falls below 0.3×109/mL. Because less than optimal doses of IFN have a negative impact on SVR rates, granulocyte colony-stimulating factor has been used to maintain the IFN dose (96). However, there are insufficient data to recommend the use of this agent as a standard of care."
I'd suggest you either try to see the Dr Mon. or at least have a phone conversation. Ultimately it comes down to the Dr's judgment regarding the risks involved, timeliness of the neupogen, ability to monitor you closely, etc. A mid-course correction might be to reduce ifn dose and test more frequently. Nevertheless, if the decision is to stop, it's important to have a good record of your VL drop for the next try - it's likely that ifn will continue to play an essentail role in tx for at least three more years, probably longer.
I was just placed on Procrit last week after I had to be admitted to the Hospital overnight for a blood transfusion. This was added to the Neupogen shots that I do 3 times a week along w/ the interferon weekly. I have no insurance either and there a programs out there that will help you. If you go to http://www.jjpaf.org/ and print off the application for the patient assistance program and take to your Dr for you and him to complete and fax back in, you'll have the medicine w/in 2 days. Also there's Patient Assistance Programs for the Neupogen also. I'm taking about $10,000.00 a month of medicine, and I get it all for free including the Pegasys. Hope this helps...
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