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895634 tn?1283989210

robo update

Finally,  a slight momentum shift.  had surveillance  MRI in Sept that showed mildly suspicious lesion.  Short interim follow Wed showed it was less conspicuous and less worrisome.  Still an ugly looking liver but at least the immediate worry is less.  Got plugged into transplant system (hope I never need to go back).  

Now my docs and I can focus on the problem at hand and that is HCV.  Hoping for some DAA HCV drug soon.  Would lkove to go the cocktail route without inf/riba, but realistically that's not likely.

Hope everyone had a good Thanksgiving.  

Best,

Robo
Best Answer
419309 tn?1326503291
Great to hear your momentum shift is back 'to the norm,' and very glad that your follow-up imaging was good news after the wait.  Sounds like your doc is right on top of things -- well worthwhile to have the TP safety net in place, but certainly the hope is to not have to go there if possible!

Best wishes to you moving forward, and hope your Thanksgiving was a good one too. ~eureka
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Avatar universal
congrats on making it to PI approval, on the tela start  and on the CC. I hope the sx are more tolerable now that they are at least a know entity.

I opted not to wait for approval and slipstreamed a PI (Vic) at w30 of an ongoing tx (primarily to reduce relapse risk). Now approaching 8th week of triple. It would be a lie to say the sx from triple have been no different from double but so far so good. You might want to make  allowance for the first few days after the ifn shot - it seems to take a bit longer to reach equilibrium with the PI in the mix.
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895634 tn?1283989210
Here's the latest Robo update as I try to carry the triple h torch to health.

Had a little scare wiith a small liver lesion.  Surgical Oncologist wanted to do CT biopsy (not so easy with hemophilia).  After my review, and review of my piers in Radiology we felt very low chance of HCC, prob focal area of perivascular fibrosis.  After multiple short interval MRI's surgical oncologist agreed prob focal area of fibrosis, no need to biopsy.  

Managed to survive to PI approval and just started INF +Telaprevir Sunday.  Started Riba with incremental increase to 600 bid a few weeks ago.  So now on triple therapy.  Had the usual flu like symptoms and Nausea and vomiting late Sunday night.  I am showing progressive improvement.  Compared to last time, much better.  No coughing!  No depression yet (on Lexapro).Gastric bloating worst symptom.

Had Il28 CC  test so odds are better.  Am determined to persevere.

Thanks for all of the support.

-Robo 229
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Avatar universal
and a very happy Thanksgiving to you - truly news to be very grateful for!

Multi-DAA cocktails are still  hard to come by. In a holiday spirit here's my recipe for what you can mix now with off the shelf (or soon to be) ingredients. Start with SOC. Add ntz, high-dose rbv  and SAMe for improved ifn effect. Add 12w of tela/boce to dramatically reduce WT replication starting, say, 7/1. Finish with a couple of weeks of IV-Silibinin infusion from Rottapharm/Madaus ( see silibinin results from last AASLD). Shake and hope. Garnish  with rash, diarrhea and depression to taste. Drink sooner rather than later.
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