Still here - week 18th UD

[Valtod]

I haven't been posting for a long time but I do check out the forum quite often. Just wanted to share with you that I was UD at week 18th :-) So I'm still around and still fighting (now in week 23).

This was really the only good news I had in the last 3 months. Other than that, I had a lot of bad personal experiences and family tragedy. My mother has been diagnosed with advanced cancer at the esophagus and they give here 1 and a half, 2 years at most. She's 63. My father went for a CT scan and they discovered similar tumor in him too (!) but he doesn't want to go for a biopsy. All this was - and still is - totally devastating for me :-(

Just 6 months ago, when discussing starting treatment with my hepatologist, he asked me if I had close relatives with cancer. The reason for his question was a lesion on my liver they discovered last  year, which I didn't have before my first PEG/Rib treatment 4 years ago. After many US, CT scans, MRI, PET scan, etc.,  they could never determine was it a hemangioma, cyst, or something more dangerous. So 6 months ago I assured my doc that no one in my immediate family ever had cancer, while now suddenly both of my parents are dying of it.

Since my first treatment I had bouts of depression and now it's more severe than ever. And this is the main reason why I haven't been posting.

My best wishes to everyone!

[Valtod]

I'm glad to see most of the old timers are still here and helping with their hard earned wisdom :-)

I have a questions for Jim (jmjm530) - I just went through the archives searching about Neupogen and low ANC and read several times that somehow your ANC bounced back and you never had to use Neupogen. Did you do something specific to achieve this? Vitamins, diet, lifestyle changes? Or it just "happened"? After week 10 my WBC and ANC were hovering around 3.0-3.4 and 1.1-1.4 respectively. However, in the last 3 weeks they're dropping: WBC is now 2.2 and ANC 0.9. I'd really like to reverse that somehow without adding another drug to the poison cocktail I'm putting in my body already anyway.

Thanks!

[Myown]

Just read your post. Sorry to hear all of what you are going through. I pray things turn around for you and your family.
Good news that you are undetected! try to keep that at the forefront of your mind at times when depression hits hard. Focusing on good news, helps keep the bad news at bay a bit. It is hard to do, but we all have to try.

in my prayers.....

I'm sure Jim will help you out alot with good advice shortly.

[jmjm530]

Hi Valtod,

Sorry about your family and all you're going through. I'm assuming you may be on anti-depressants (ADs) but if not, you might discuss with your doctor. Lots of folks on treatment have found them very helpful getting them through.

Regarding your ANC, I don't think you have anything to worry about at this point. ANC .9 is very decent and as you say ANC does seem to bounce around a lot.

For example, my ANC dropped as low as .32 and two weeks later was over 1. The next week it dropped to .6, then went up again, etc, etc. I never took the helper drug Neupogen, and more direct to your question -- I never took anything specific (diet, supplements, etc), it "just happened".

My NP pointed out that ANC numbers often reflect the bodies reaction to infection and therefore can vary. My medical team primarily looks at ANC and does not get concerned with WBC.

When I asked the NP when she would intervene with the helper drug, Neupogen, she said they rarely use it in their practice as it's not necessary. For context, this is a very agressive group that sees large numbers of Hep C patients and administers the helper drug Procrit quite liberally.

When pressed, she said that if my ANC dropped to 200 and stayed there, we would talk about Neupogen. From what I've read here and elsewhere, this is not uncommon although the more common protocols are to administer Neupogen (and/or dose reduce) when ANC drops to 750 or 500, depending on the doctor.

My personal feeling is that the reason many doctors and hematologists intervene so early with Neupogen is because their basing their decisions on older studies that don't differntiate between Hep C induced neutropenia (low WBC) and non-Hep C induced neutropenia.

For example, this study suggests that treatment-induced neutropenia does not correlate with an increased rate of infection: http://tinyurl.com/qjtfz

From the abstract: "...It was found that patients who developed neutropenia during treatment of chronic hepatitis C virus infection with a combined therapy based on pegylated interferon-alpha2a plus ribavirin did not show a higher infection rate or increased severity of the disease."

For those that are told they need Neupogen at higher levels of ANC because of the risk of infection -- this study might be something to discuss with their doctors.

All the best luck with family and treatment.

-- Jim

[Valtod]

Jim, thanks for the helpful response! You're a real treasure - I talked with 2 dozens hepatology experts in the last 6 years but I can say that you're better source of information than all of them.

Myown and Rocker, thanks for the support. I'll try to stay positive and continue the fight.

BTW, the only support drug I'm on is Ativan. Which is anti-anxiety but not anti-depressant.

[goldyn]

I tell you what that ativan has been a great helper drug for me , especially towards the end i seem to feel shakey a lot i just did shot 42/48.