Week #10 - Shot #11 - and failed treatment.

[hcvJames]

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

[hcvJames]

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?

[hcvJames]

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.

Sorry rambling.

****
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.

****
Sound plausible ????
*************************


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 !

[Trish77]

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.

[can-do-man]

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.

[willing]

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.

Did your ANC drop below 0.5 during your tx ?  

[can-do-man]

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.

Best to you
cando