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Author Topic: New here and completed 8 week treatment plan.  (Read 8004 times)

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Offline Regman

  • Newbie
  • Posts: 2
New here and completed 8 week treatment plan.
« on: September 08, 2016, 09:03:58 pm »
My name is Gary and this is my first post. Thank you for accepting me into the group. When I was starting pre treatment workup for tonsil cancer in 2002, the radiation oncologist insisted on an HCV antibody test which I tested positive. A subsequent PCR/DNA test validated the positive test results. A Fibrosure test, after that, confirmed that I had a low viral loading and ALT and AST were high but within normal limits. I was told to wait until a better cure came along. 

I was treated in 2003 for tonsil cancer with 72Gy of radiation and Cisplatin chemotherapy. A recent preliminary study by MD Anderson cancer center suggests that there may be a link between oropharyngeal cancer and HCV. As a result of the latent side effects of radiation, I am now NPO and have been on a feeding tube for the past 3 years. I was the first patient at my hospital to crush the Harvoni tablets, mix it with blended fruit to minimize clumping and clogging of the feeding tube.

Fast forward to today. I was screened and approved for Harvoni, for an 8 week course, due to my historically low viral loading )>120,000 UI/mL. I completed treatment on August 8th and had very few side effects other than the normal ones; occasional headaches (usually not requiring medication) and nodding off - a lot, spontaneously in some cases. One time I was combing my dog and fell asleep with the comb in my hand, in his fur! Often times just hydrating would cause me to nod off.  At the midpoint of treatment lab work revealed a dramatic drop in AST, ALT, and Igg and the viral loading dropped to >20 which the numbers remained constant for the 8 week labs as well.

My feeling of well being has been consistently good and except for nodding off, my energy levels have been very good and consistent. In the last few days, however I have developed some ankle swelling, not terrible but noticeable nonetheless. Its strange that this developed not more than a week after my last in office visit where I was asked if I had any issues with swollen ankles. The skin on the ankle feels like I have a few pairs of tight fitting socks on. I have a call into the doc but have not heard back yet. Creatinine and BUN were within normal limits.

Igg is a blood test for a specific protein in the blood, that can be a potential precursor to lymphoma or multiple myeloma. It dropped from 2420 UI to 1400UI and right back into normal range. My oncologist has been following men for the past year because of it (for a condition called MGUS or "monoclonal gammopathy of undetermined significance").  Im hoping that the Harvoni may have treated that as well, or the improvement in liver function anyway.

Offline dragonslayer

  • Member
  • Posts: 873
Re: New here and completed 8 week treatment plan.
« Reply #1 on: September 08, 2016, 09:15:39 pm »
Hi Regman,

Welcome to the forum.   I wanted to research the link between your cancer and HCV, and came up with this newer study, based on the work of Anderson..  Perhaps youll find it interesting:

http://www.ncbi.nlm.nih.gov/pubmed/27075854

When you say at midpoint, your viral load had dropped to >20, did you mean <20?   Hoping you achieve SVR.. Youve been through the ringer!
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline Regman

  • Newbie
  • Posts: 2
Re: New here and completed 8 week treatment plan.
« Reply #2 on: September 08, 2016, 10:37:24 pm »
Oops -I always get those mixed up - it was less than 20. Incidentally I had Hep A in 1977 and it might have been misdiagnosed although I did test positive for the A antibody. I also had a Pontines stroke in 2014 as a result of radiation damage to the baroreflex receptors in the carotid artery. I have been vaccinated for HepB.  Basically my experience with Harvoni was pretty good - no where near as bad as the Cisplatin chemotherapy which practically killed me in 2003.

The study you cited is the same one I was referring to. Its of interest to me as tonsil cancer is oropharyngeal. It responded extremely well to treatment as most HPV oral cancers typically do so I always assumed that my tumor was HPV induced (they didn't have a test for it in 2002). It too had vanished off the X-ray at the midpoint of treatment (it was a 6cm tumor!). The cancer was the easy part - the radiation side effects (which can go on for 50-60 years, post treatment) is what's kicking my ass today...
 
SVR - significant viral reduction???

Offline KimInTheForest

  • Member
  • Posts: 1,972
  • Believe in yourself
Re: New here and completed 8 week treatment plan.
« Reply #3 on: September 08, 2016, 10:58:12 pm »
SVR - significant viral reduction???

Welcome Regman! And congrats on completing your Harvoni treatment.

SVR = Sustained Viral Response. It is how cure is defined. With the new drugs such as Harvoni, no viral load 12 weeks after completing treatment (called "SVR12") is considered cured.

best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline Baxter

  • Member
  • Posts: 87
Re: New here and completed 8 week treatment plan.
« Reply #4 on: September 08, 2016, 11:05:41 pm »
Hello, Gary! Congratulations on completing your treatment. Were you clear at the end, or still detected at <20? I'd be concerned if I wasn't clear at the end of 8 weeks. Here's hoping for The Big Zero at 12 weeks post!

For what it's worth, the swelling in the ankles is not unusual. It's called edema. I've been finished for 12 weeks now (just had my 12-week bloodwork yesterday, in fact) and I still have some issues with it, although it's nothing like when I was on treatment. We're treating it with Lasix and one other drug, the name of which i can't recall now, but it's really just a minor annoyance at this point. I'm told that as the liver heals, it should disappear.

Best of luck in kicking this thing. And welcome to the board!
Gen 1a
Inf. '85
Dx '98
'98 biopsy - Grade 2, Stage 2, VL 7 mil
'01 biopsy - Grade 1, Stage 1, VL 1.5 mil
'08 biopsy - Grade 1, Stage 1, VL 3.5 mil
'12 biopsy - Grade 1, Stage 1, VL 3.5 mil
'16 Fibrosure - Grade I, Stage 3, VL 6.4 mil and 4.8 mil
4/23/16 - ALT 89, AST 50, pltlts 120k. Started 12 wks Harvoni
4/31/16 - ALT 30, AST 21, pltlts 125k
4/14/16 - ALT 25, AST 16, pltlts 126k, VL 69
5/11/16 - ALT 28, AST 21, pltlts 140k,VL <15
6/7/16 -EOT, UNDETECTED!
9/7/16 - cured. Low Stage 2 fibrosis

Offline dragonslayer

  • Member
  • Posts: 873
Re: New here and completed 8 week treatment plan.
« Reply #5 on: September 08, 2016, 11:31:57 pm »
Hello, Gary! Congratulations on completing your treatment. Were you clear at the end, or still detected at <20? I'd be concerned if I wasn't clear at the end of 8 weeks. Here's hoping for The Big Zero at 12 weeks post!

For what it's worth, the swelling in the ankles is not unusual. It's called edema. I've been finished for 12 weeks now (just had my 12-week bloodwork yesterday, in fact) and I still have some issues with it, although it's nothing like when I was on treatment. We're treating it with Lasix and one other drug, the name of which i can't recall now, but it's really just a minor annoyance at this point. I'm told that as the liver heals, it should disappear.

Best of luck in kicking this thing. And welcome to the board!

Baxter, EOT viral loads dont correlate that well with SVR, hence its really not a big deal for most of us who were low level detected at EOT or before.  Most of those go on to resolve to SVR by 12 wks post.

https://hepatitiscnewdrugs.blogspot.com/2015/03/hcv-rna-does-not-always-mean-treatment.html
« Last Edit: September 08, 2016, 11:36:53 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

 


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