post treatment update

[susan400]

I know some have had a period of time after treatment that was hard and I just wanted to check in since my last treatment day was on 09/10/14.  I've been off TX drugs 10 day now.  I can't say that I have a huge surge of energy, but I can't say that I'm feeling that much worse either.  I feel about how I felt before I did the treatment, like how I felt back in May.  It's weird because I thought being undetected I would be able to tell a difference, but so far, no difference.  My post treatment viral load isn't back yet, as I just got that drawn last Wed. on 9/17.  My other labs are back though.  My blood sugar, thyroid, CBC and liver functions are all fine.  I don't have my actual paperwork yet, but talked to the C.M.A. on the phone on Thurs. and he looked it up for me.  Maybe I'm being too optimistic, but I think it's a good sign that I didn't get a bump up on my LFT's after being off the meds for a week.  I've had a few days when I was overdoing it when I was unpacking boxes for my mom after her move, but that has passed.  I've had some issues with my stomach/digestion getting readjusted to being off the meds.., don't know if anybody else has had post treatment issue come up.  Anyway, I hope everybody is doing well.  I'll let you know when my first post treatment viral load comes in.  Probably early next week.  I went to my scheduled dental appt. after treatment and unfortunately, my gums (which after all my treatments have been affected with more periodontal issues), .., my pockets numbers have gotten worse since my last visit 4 mon. ago.  And they told me that this was nothing that I'm doing wrong on my hygiene.., they said my home care was excellent-but it was caused by the TX meds.  So, I have to go in for an extra deep perio-clean next Thurs., not looking forward to that at all!  They will numb me up with the Novocaine, but I could think of anything I rather be doing than getting tortured in the dentists chair.  Susan400

[almostsixty]

Good to hear you are doing so well. Congratulations!

[susan400]

Did you get on the transplant list, or did you actually get a transplant?? The last I heard from you, you had moved up to the upper midwest to live near a transplant center.  If you were feel better and wanted to treat, the Sovaldi, Riba and Peg for 12 weeks is when I did that FINALLY workedl   I wasn't eligible for the Olyssio because of the resistance issues from being exposed to the Telaprevir.  I went undetected by week 4 PCR, still undetected on week 8 PCR and then, still undetected on 1 week post Tx EOT PCR.  I exercised throughout my entire treatment, ate my shitake mushrooms to help my low white blood cells-but still needed 2 Neupogen shots..., per the drug companies recommendations, I changed my toothbrushes every 2 wks.  I drank my green tea, but not around my medication times, I took my meds in the morning and had my green tea in the afternoon and then, second dose of Riba at 7 pm.    I also wanted to tell you that I get help in funding for the treatment through the PAN (Patient Access Network), the Gilead has.  They were great!  My husband insurance picked up a portion and the PAN picked up the extra amount not covered by the insurance.  I just really felt like God had worked it all out for me in that I ended up with NO CO-PAY.  My husband and I over the years have had some tremendously high co-pay on my various treatments, so this was a very big blessing.  Anyway, Magnum you were always so helpful to everyone on here and I want to see you get your SVR, too!  Susan400

[FlGuy]

Holy cow!  Magnum too!  Last time I read a post from you I think you were leaving Vegas?  Gonna give treatment another go?  Yeah, I think you + Susan = about 20 tries.

[Magnum]

Couldn't be happier for you. I think you and I may hold a record for how many times we treated and failed. But all that is in the past now for you. I wish I could afford to order a parade for you. This proves that if you keep fighting, you will win in the end. May you live a long long long life my friend...

Magnum

[Livelife777]

Congrats as that's a really good sign so far.  Your odds have just tipped a bit into the more favorable category.    Keep the trend going.
Great news
....Kim

[Buba1962]

Great to hear ! Good Luck ! Sorry about dental issues , I myself am a big baby when it comes to the dentist .

[FlGuy]

That's a giant step.  Just need the same a few more times in the coming weeks and months.  Really happy for you.

[Ekkiemom]

CONGRATULATIONS!  this is the best news....u must be thrilled...sending you many hugs..take it easy on the body.....
Be Well
Deb

[Mmorgan854]

Hey Susan, was soo happy to see what you posted.  Way to go!!  I haven't been on the forum long, but aware of your past numerous treatment, an gotta tell you, I'm amazed an inspired by your strength ( and of course all you warriors out there that have treated multiple times )  when I tried to treat in the 90s an failure, I just did not have the courage an strength to attempt again. I knew eventually the virus would catch up with me.  Just put it in Gods hand.  BUT, I know that if treatment isn't successful for me, i will not give up this time: and this forum an the people here are responsible for my complete turn-around regarding continuing the fight if need be.  Peace out, my warrior friends.   Mary

[sue4hula]

Wonderful news!!!!!  I'm so happy to hear the 1week post tx news!  I'm also glad to hear you're not feeling any worse!  I am starting to feel less fatigued every week.  I have had some trouble with my neck and knees, but nothing that stops me!  

I also saw the dentist after treatment.  The drugs affected my gums too.  No need for the the deep treatment yet... I started back with my Sonic and bought a Water Pik.   I hope it helps!   I despise dental procedures!  Awful!

Again.... I am so happy for those of us that started treatment together that we made it through to the waiting room together.  I am also so grateful for those ahead of us who helped us along.  

Here's to what we hope are DEAD dragons!

[patra_]

S:  Congratulations!! Another step up that staircase to the platform to accept you DRAGON SLAYER Insignia!  

Good luck on continuing Und to SVR!!!  Pat

[susan400]

The CMA from my doctor's office was working late tonight and he actually just called me at 8:20 pm EST.  Sort of shocked me, but glad that I got the call.  YEA, I am still undetected 1 week post TX drugs!!  More hopeful than ever.  Susan400

[Sovaldi13Newbie]

I am just so glad to see you as doing as well as you are, like I've said before, you're an inspiration to many, as so many of the gladiators are here. I have to go to the dentist to for a cleaning, and I'm dreading what he'll see, but I have to find out. Just hope things get better and better for you!!!

[FlGuy]

I'm sure you realize that a lot of us here have been waiting for your news for YEARS.  With the right outcome some of the concerns about your post-treament issues will float away for a while.  I'm taking the post LFTs as a sign. So, as soon as you hear......

[susan400]

Mary,

Glad to hear your EOT viral load was undetected, that's great news!  I should hear back on mine tomorrow or the next day.  I had mine 1 week after treatment, but I don't get a 4 wk after EOT viral load.  The next one I'll get won't be until 12/17/14, if that's still undetected, then, I'll get one at 6 mon post EOT on 3/17/15 and if I'm still undetected, only then, will doctor say, cured.  But, I'm 99.9% sure that my viral load from last Wed., will still be undetected.  It's weird because I had very little problems with my mouth during treatment. In fact, because I was doing such 'extra' on my oral hygiene, I wasn't expecting it to be all that different.  I have had to get periodontal cleanings for years, at every 4 mon. intervals, but they aren't the super deep, needing Novocaine kind of deep cleaning like I'll now need on Thurs.  I've always had really GOOD teeth, never having cavities or ever needing any bridges or root canals.  It's my gums that have 'gone to pot [southern expression]' with all these interferon treatments.  During my last treatment, I was brushing about 3 times a day plus flossing twice a day, rinsing with the diluted Listerine, on one of my brushings a day-the electric toothbrush + plus all those new toothbrushes we were changing out and I was even changing out my brush heads, too.  So, I guess that's why I was surprised when I went in for my normal 4 mon. perio-clean and they said that they wouldn't be able to do it and that they'd work up a 'treatment plan' for me to come back in and get numbed up for the under the gum scaling/planing, etc.    I had all these appts., that for different things that I rescheduled until after I was done with the TX, because I just didn't want to have anything else to deal with medically, besides this treatment.  So, tomorrow morning, it's on to the asthma/allergist appt.  Oh well, no biggy.  At least we made it through the TX, right!   Susan400

[Mmorgan854]

Hey Susan, so glad to see your update.  Was hoping you had gotten through the move with your Mom unscathed as in, not over doing it... Sure hate to hear about your dental procedure.  Looking back, the "over the top" irritability an mouth issues was probably the hardest so far as sides. 2 dental apps in three mths.  My dentist had to grind off any little edge on my inside teeth because any little bite on my tongue would turn into a painful ulcer which would just not go away.  Mouth issues are all resolved now, thankfully.  Once you get this dental issue taken care of, hopefully the only time you'll be in the chair is for cleanings.  We can only hope..lol. My EOT V.L. Was undetected Friday.  Now waiting for Oct. 8th (4 wk. after EOT). The fatigue is still very real but I'm up early an getting into a slow routine.  Morning services plus study wipes me out but a satisfying wipe-out.  The irritability is easing off an I'm SO THANKFUL for that especially.  Just dawned on me while typing, fatigue must be getting way better, 3 wks ago I was in bed most of the time.  WOW!!!  Since my viral load was undetected, my grand baby Dorothy is spending the day with me.  Life is good today an sending good thoughts your way.  Here's to beating the dragon!!!  Take care.  Mary

[GoGG]

Made a mistake. Go figure. My EOT was August 28 th. Your going to high five me at the finish line. GoGG

[GoGG]

Wow, now that is an Awesome update! I love when people keep updates and such up to date. It just shows how generous one is to share such intimate stuff. I am so glad to hear you are getting through it all with such a positive outlook. I am almost a month post and know what you mean when you say, " I really don't feel any different. " you won't let your mind go in either direction.
              I did have issues about two to three weeks post with loose stools. For a bit I thought maybe I had the stomach flu. Went away as fast as it came. I also am having dental issues and was told strong drugs. I wish you well with the dental visit. Stay strong and keep fast walking to the finish line. I'll soon high five ya!                                GoGG