Aa
Week #10 - Shot #11 - and failed treatment.
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 ...
They didn't.
Summary: 7 factors = Low
WBC = 1.5
Hemoglobin = 10.8
Platelet Count = 43
Plus 4 others
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.
Questions :
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.
All the best
James
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 ...
They didn't.
Summary: 7 factors = Low
WBC = 1.5
Hemoglobin = 10.8
Platelet Count = 43
Plus 4 others
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.
Questions :
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.
All the best
James
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
cando
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
cando
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.
best of luck to you.
mb
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.
best of luck to you.
mb
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.
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.
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.
neutrophils usually make up around 70% of your wbcs. You can calculate ANC given WBC the neurophil pct and the Band pct. Here's are typical examples of the calculation:
http://www.globalrph.com/anc.cgi
http://www.curehodgkins.com/hodgkins_resources/determineANC.html
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!).
http://www.globalrph.com/anc.cgi
http://www.curehodgkins.com/hodgkins_resources/determineANC.html
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!).
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?
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