End of tx with Victrelis wrap up

[sandysf]

Just thought I would post this for those of you just beginning tx or those in the early stages.  I end my treatment on December 31st, I will have done 30 weeks total (started Vic a bit late).  I have been UND since week 7.  My side effects while exhausting at times have not been unbearable.  I developed the riba cough and rash within the first couple of weeks, but those both disappeared by week 14 or so. The rash was easily managed with over the counter hydrocortisone.   My ANC dropped  to 400 within the first 5 weeks of tx and I have been on weekly neupogen since then, although in the last 3-4 weeks I have reduced neupogen to every two weeks and reduced peg to 135 mg.   My HGB went as low as 9.2 but not until week 16, at which point my riba was reduced from 1000 to 800.  This made a huge difference in how I felt and since then my HGB has hovered about 10.2.   I have been exhausted and lethargic, not sure I could have worked during these months,  but maybe if I had to.  Due to constantly low WBC, I have stayed close to home, read alot and had a relationship with netflix.  

I had frequent headaches,  2-3 times per week, sometimes they would last 24 hours or more.  I haven't felt like eating much and for the first 4-8 weeks of Victrelis I had severe dry mouth and metallic taste.  Biotene helped with this sx.   Have had a couple of yeast infections, treating a urinary tract infection now, but nothing more severe than that infection wise.  Have lost at least 75% of my hair and it is still falling out! Use wigs when I go out.

Due to early response to treatment (I was UND on SOC) docs say I have 90% chance of SVR... I was pretty scared before starting tx,  I imagined it worse than it was.   The chance to be free from this disease was worth the past 6 months of treatment.  I know many on this board have had it worse and some better... but for those just starting,  I wanted you to know it isn't as scary or debilitating for all of us!

[micheall]

Please keep us posted now that you are done.On your follow-up let us know the next two blood test to see if it finally over.I am on Incivek and having problems swallowing the 20 grams of fat needed with each dose.With Victrelis it is not necessary.

[sandysf]

Karen- when each of us get to SVR we will look back on the sx and remember them mildly as they will be a small price to pay for cure.  I am following your progress and wish you continued success.

I am six days out from ending tx and it just feels so good not to have to take 17 pills a day!  My hair is so very thin I was wearing a wig or head scarf every day.  I finally went to the hairdresser yesterday and cut it all to about 1 inch.. not that there was much left to cut, but a fresh start nonetheless.  

I feel better every day and one sure sign of my impending recovery is that I am thinking of new projects to do around the house.. watch out!  My husband is grimacing as I look at new couches online!  :)

[crossroadsec]

Great bio of your experience. We just keep hearing more n more success stories - laced w/ tales of SE. I missed this thread n am encouraged to read it! Congratulations to Sandy n all of us! Xoxo EmoKaren :)

[FightinIrish1977]

I would like to post this to EVERYONE  ON or starting treatment.  I would like to give you all hope and ease your fears. I just completed 40 weeks of this treatment yesterday, The doctors kept telling me it was going to be grueling, as did others, however, I want to let you all know that where there is a will, there is a way!  I did take a leave of absence from work, since it was physical labor, but i returned to school FULL TIME, and managed to keep a 3.82 average. I got my drivers license back and continued cooking, cleaning, and running my household as usual!.. It is very tiring, and will make you quite moody at times, but it is SOOO WORTH IT!  If i was able to accomplish so many things while on this medication, ANYONE CAN DO IT.. Im sure you have all been through alot worse in life than this medicine, trust me... its not as bad as everyone says.. just relax, pace yourself, and enjoy the fact that you will soon have your health back. I am so blessed!

[milliehepc]

I too want to thank you and everyone else on this thread for sharing.  A newbie myself who has yet to start treatment. - I continue to look to this forum for support.  I've gotten so many positive messages - I'm beginning to think I have a new family.....

I just want to shout thank you sandysf and thank you all.

Millie

[321shawn]

Thank you so much for sharing your tx experience. I hope to be started on VIC in Feb. I am plenty scared, this is been a long road and 3 trys on SOC, and still no response. I  am very excited to hear about your journey it gives me strength! please let us know how your 6 month checkup went. Shawn

[spectda]

Congrats on being almost there. Hoping to here your SVR post in about 26 weeks. Happy Holidays!
-Dave

[SusanBT]

Thank you for your post.  I'm one of the 'newbies' and will be starting my bocep today.  6 wk lead in on peg/riba; beginning viral load 2.5 mil; @ 4 wk was 139,000 - not great, but 1 log drop.  Sides on peg/riba have been tolerable.  I'm scared about adding the bocep.  Your post helps me see light at the end of the tunnel.  God bless.  

[Diane1186]

Have a Happy New Year. Thanks for posting your success.  Now time to get out and enjoy your virus free state.  Diane

[candyce1953]

Thank you so much for sharing your story about Vic TX
It is so helpful
I am terrified of TX and success is great to hear as well as what to expect!
Thank you

[sandysf]

thanks to all of you for the kind words and good wishes.  I will post my status as I test VL post treatment.  I am glad newbies found my post helpful, I remember spending hours scouring this forum to help me determine what I would have to deal with during tx and found everyone helpful and informative.  I could not have done this tx without this group and those who were always willing to help.. particular shout out to willbb, flcyclist, hectorsf and many others!  Best of luck on SVR to all of us fighting this disease!

[gene53]

Congratulations Sandy, and hope the best for SVR for you!!!!

I am getting ready for round 3, with Incivek starting Jan 4, and have been reading a lot on here recently to prepare.

I really appreciate ' EVERYONE ' sharing there experience's with the sx's and how they dealt with them. I have learned much recently and will be prepared the best I can.

Thanks Sandy and everyone!!!  & Good Luck for those still on the tx!!!

Gene  

[willbb]

Thx .for posting this sandy.  and  nice to hear this is coming to an end for you!  Nice way to start a new year , and look forward to an SVR announcement mid year!!
Best to you...
Will

[screaming48]

good deal, glad you made it through

[printze]

Glad you are at the end , I will be starting Vic sometime in new year . All the best to you .

[flcyclist]

Great way to end the year and bring in the new one.  Congrats to you for nearing the end of trt.  I look forward to hearing your announcement on the west FL coast as you yell from the east coast.  Wishing you the very best.

[slideman]

Thanks for posting this. My tx was very similar. I did Inc, and stayed at 10.2 also. I never really got a rash but I sure did itch!! I still have to take riba untill Thurs this wk. 24wk vl test will be Fri. I was und at 4,12,and again at 19wks. The Dr says she dosent expect me to be any different at wk24.
I think its very important for those of us at the end of our tx share with new tx people, that although there were some tense moments, we can do this. I see a lot of people getting ready to tx that are real nervous about all this, and I dont blame them. Maybe if we speak up about our tx, it will be that little nudge that will convince even just one person to tx.
Good luck, and I hope to hear about your SVR, you can bet I will yell it so loud they will hear it from other zip codes!!