tried to post here some weeks ago, had a typo in the email (no @) and when I didn't work I put it aside and am just getting back to it. At a good time, as I had blood work yesterday and for the first time in many years my lft numbers are in the normal range. I cried when I saw them. Waiting for the viral load.
To back up a bit...I have been hovering on this site for about
a year, became aware of my hep c in December of 2013. Probably had it about
40 years. BTW, deliberate use of the word hover - lurking sounds too sinister to me. Regardless, I have become involved in many of your stories gaining lots of information on the way. the miz I was sooo hopeful during your January drama that there would be a good liver for the mister. I share your disappointment and am hoping along with you that the tp happens soon.
Back to me. (all about
me
. Dx of hep c, at the same time dx of hypothyroid. On synthroid now, when I had the thyroid test my TSH was 20.19 and I was feeling pretty lousy. Got an appointment with the liver guy (I am in Pittsburgh, very fortunate) that was several months hence from when I was dxed.. Saw him April of 2014, treatment option was interferon with ribavirin. Terrified me, I had read many stories of that combo and had a friend who had suffered through it and relapsed. Biopsy showed bridging, stage noted as 2 - 3. In the CT scan nodules were noted in my right lung, went back for a CT of the chest. Nodules were there, followup CT scheduled for September. Postponed the start of int/riba tx until after my vacation in August.
While on vacation I had a lump come up in my right breast. Unconcerned, I had a simple cyst long ago that presented the same way. Edges defined, lots of movement. I had had a mammogram in April, was not worried. But it grew quite a bit in that week, saw my PCP when I got home. He said "it doesn't look suspicious but there are no guarantees". Set up appointment for aspiration which ended up being a biopsy. Ultimate dx, Stage IV melanoma, primary tumor unknown. Lung nodules both melanoma. Postponed hep c treatment to treat the cancer. Was blessed to have been diagnosed with cancer one week before FDA accelerated approval of Keytruda (miracle drug), ironically my liver disease allowed me to bypass the protocol of other treatment preceding keytruda and I started on it on 10/10/14. Ironic to me that was the date of approval of Harvoni.
I am in the 24% who show a dramatic response to Keytruda. Cancer is almost gone, still treating with keytruda but am confident enough of success with it to go after the hep. During my cancer delay interferon was taken off the table, I now get to treat with Harvoni. Lots of positives and glad to be underway on this part of the journey.
I started Harvoni April 10th, six months after starting Keytruda. The first day I was very sick for a few hours (unfortunately while working concessions at my daughters lacrosse game, and I was very, very ill). Hit fast and then I felt okay a few hours later. Am not without sides but I am asking my body to tolerate a lot of meds. Often feel like I have been hit by a truck - feel fine so long as I don't have to move. Am doing all the recommended things and continuing to teach yoga - very supportive students who know my story. So it's all good right now - many providential twists that leave me wondering just how it all lined up this way - left with a strong sense of a need to give back on some level and a lot of gratitude for how it has played out.
I have always intended to post, knowing this is a group who will share in my thrill of a normal ALT/AST. Most people can't get it. I haven't been able to tell anyone the results without choking up, and became aware yesterday that the hep c has always scared me more than the melanoma. Don't know why, just my feeling. So thank you all for being here.
BTW mama lama I share a sobriety date with your husband, have a few years beyond him. 9/27/85 for me.
hope you all have a great day.
Barbara