Hep C Discussion Forum

angelseven · Senior Member

RE: A journey through the twists and turns of Sofosbuvir/GS-5885 Fixed-Dose Combination ± Ribavirin

gordy · Newbie

new to this forum. day 30 of sovodi+rib. I am a newly diagnosed diabetic so I don't know which meds are giving what side effects.liver enzymes down to 25,weak legs and general lack of ambition and strengh. other wise doing well.

Tig · Admin

Hello Gig,

Good to see you again my friend! Sounds like treatment has been difficult but successful so far, good deal! How has your energy level been holding up? With the anemia and low platelets, you must be feeling lower than whale poo. Have you required a transfusion Or rescue medication for it? I agree that you've seen just about every aspect of this disease, yet your attitude and outlook remains positive. I tip my hat to you sir, you've earned that warrior salute and I send it proudly. Continued good luck....

Tig

Gig · Member

Hey All

Haven't been here in a while had to say howdy. Week 23 Rib., Sof., Led. and so far have restrained myself. Driving is hardest get mad at everything!!!! Well knowin its meds helps I tink. Tolerating meds fair been und. since 3rd week pray it stays that way. Well best wishes and tons of strength to those wrestling with the Dragon.

3 yr in June post L. Trans. 22 months of Inter. Rib major problems had tummy drained 22 times, varices platletts down to 11 so everyone here I've been thru it all as far as hepc and I am still kicking so there is hope and odds in your favor. The most important thing I did was take my Illness as my responsibility didn't give it to Dr. I researched day and night and learned as much as I could and most importantly I got copies of everything they did to me. That worked for those times when they said they will have to get results and have me come back. Not so fast chief what results you want. I will admit after years of Treatments it turned into a brief case but it speeded everything up. I keep an eye on my bloodwork and have brought it to the attention of Drs with good reception. So in closing be proactive in your treatment, eat like food is a medicine processed food is like poison. Now that it sounds like I am lecturing will close not with a prayer but a sa

lute from an old soldier fighting a different war good luck all!

Gig

US Army Engineer

Senior Ride Captain

Patriot Guard Riders

The character of a person can be easily judged by how they treat those that can do nothing in return.

-- Edited by Gig on Saturday 12th of April 2014 02:29:35 AM

Tig · Admin

Hi Grams,

Welcome to the forum from me too! So glad you completed treatment and the results are good. It is encouraging for everyone that is going through the same treatment. If you need any help navigating the forum, just let us know. There are several here that will be quick to lend assistance! Good luck and please let us know how things progress.

Tig

Grandma · Newbie

My geno type was 1 a. I hope to be able to figure this messageboard out I am having a little difficulty with it.

Cinnamon Girl · Guru

Hi Grandma, welcome to the forum, and congrats on successfully completing your trial with Sofosbuvir and Ribavirin! We`re always pleased to hear from people who have participated in clinical trials and your post is very encouraging for others who might be considering this combo as a trial or treatment.

I sympathise with you over the `riba rage` side effects, and so will many of us here, it can be very unpleasant. So as you did 24 weeks, can I ask you if you had genotype 3?

Feel free to start your own thread by clicking on `Start a New Topic` if you`d like to, and thanks for sharing your story, we appreciate it.

Wishing you all the best for a happy Hep C free life! smile

Grandma · Newbie

Want all to know finished gilead study 24 week sofos/ribavirin treatment in October 2013. was negative 1 month into it still am. I am 57 years old. For me worst side effects were leg cramps at night, riba rage and anxiety, sleepless nights. Did not have all every day and probably the riba rage was the worst. the trial for me was mostly a breeze. Feel fortunate i was able to get in a trial. to all of you who may be getting into a trial with these drugs dont stress much. It really was easy well except for the goofy log . I wish you all well, send prayers. I m negative now and i hope the same for you all

Matt Chris · Guru

Hey Karen

Great thoughts

Karen wrote:
Be your own advocate, do your research- find the right doctor (I went through 3 before I found the right fit 700 miles from home)-ask questions..do what is best for you. Know that you are not your liver-make your decisions based on the whole you
Develop patience-it takes time to get everything in place. Once treatment starts, be patient with yourself, it can be a mental/physical roller coaster. Once treatment ends, don't necessarily expect a quick recovery, let your mind and body heal
Be compassionated and have empathy for others-we all struggle in different ways...this includes others with Hep C, caregivers, friends, spouses, this is not just about us...it is about all of us
Most of all...have a sense of humor. Don't take yourself to serious.

Spoken like a veteran of the war on HCV, life lessons can be learned if we try to look inside of ourselves.

matt

Cinnamon Girl · Guru

Good to hear from you, Karen and thanks for your lovely and very thoughtful post. Wise words indeed, and I agree with everything you say. All good advice for anyone considering entering a clinical trial or starting treatment, and most of it can also apply to many other real life situations we all have to face.

You`ve certainly been through some unforeseen twists and turns over the last year, and your strength and wisdom has got you through, peppered with a good dose of humour!

Thanks so much for sharing your thoughts, and I wish you every happiness in your future, and I hope you`ll stay in touch!

Sending love and all best wishes your way, Jill xx

Terry · Senior Member

Hi Karen

Thanks for sharing your journey with us. We have all had many ups and downs but in the end it's that final result that counts and you have hung in there through out the treatment and you deserve to just relax now and enjoy. I like the comment about having a sense of humour because I also have tried to do that even when we know at times we wanted to spit nails. lol Good Luck !

HR · Senior Member

Great post Karen. Wishing you the very best:)

Karen · Senior Member

Todays blood draw marks the end of a one year journey. I would again like to thank all of those who encouraged me, gave their unrelenting support and straightened me out when I got out of line (you know who you are lol!!). You gave me the strength and courage to head down a road with so many uncertainties. If it had not been for you, I would be facing a much different life today.

Giving thought to the last year, here is what having Hep C has taught me (hope this helps a few newbies):

Be your own advocate, do your research- find the right doctor (I went through 3 before I found the right fit 700 miles from home)-ask questions..do what is best for you. Know that you are not your liver-make your decisions based on the whole you

Take time to make the right decision-don't panic, you have time

Stay connected to all of the beautiful people on this forum..they are the catalyst to help pull you through when those close to you do not understand. The love from this forum has made this last year well worth the ride.

Do not become attached to a perceived outcome-more often than not, you will be disappointed

Get rid of judgments, about you and about others-we all do the best we can

Develop patience-it takes time to get everything in place. Once treatment starts, be patient with yourself, it can be a mental/physical roller coaster. Once treatment ends, don't necessarily expect a quick recovery, let your mind and body heal

Learn to go easy on yourself-let go of expectations

Be compassionated and have empathy for others-we all struggle in different ways...this includes others with Hep C, caregivers, friends, spouses, this is not just about us...it is about all of us

Most of all...have a sense of humor. Don't take yourself to serious.

Oops!...almost forgot the most important lesson of all-if you take part in a trial, do NOT breakdown or shed one tear in front of your trial nurse-this could cost you your life...(a little bad humor from an earlier episode)

To conclude: I salute all who have endeared one of the most life changing experiences imaginable...Sending love and good wishes your way.

newmex · Senior Member

Karen,

Great News!! Very Happy for you! Wishing you all The Best in The New Year!

mallani · Guru

Hi Karen,

Fantastic result! After all your trials last year, this is a wonderful reward. Look forward to 2014 as the first HepC-free year. Cheers.

Matt Chris · Guru

Hey Karen

That's super fantastic , and the best news of the day. Another all oral Gilead combo 24 week beauty, the future is now and Karen you are a living time machine for all that will be inspired to try this treatment (Sofosbuvir-ledipasvir alone or with ribavirin)

Just remember we now can refer to you as the $200,000.00 woman, just kidding you are well over million.

Anyway I am very happy for your great day with many more for you to come.

matt

Cinnamon Girl · Guru

What fantastic news, Karen, excellent!! Congratulations, looks like SVR12 to me!! I couldn`t be more pleased for you.

Happy New Year!! biggrin

Tig · Admin

Yeah!!! That really is wonderful news Karen! Congratulations for the wonderful start to the New Year. With results like that, SVR seems like the next thing you're going to hear! It doesn't get more exciting than that! WOOT!! biggrin

Karen · Senior Member

Great start to the new year....what a glorious day!

Message from my trial nurse:

(Karen, I have confirmation that you are to return for your final blood test in 12 weeks which means the virus is still not detected. Congratulations and Happy New Year. I will be contacting you at the end of February to schedule the visit.)

Ckncali · Veteran Member

Hi Karen,

Best of luck on your results. It has been a long trial journey for you. I remember reading about your clinical trial experience when I was searching for a trial. It was helpful to me to read about your experience with your trial in making my decision to go on the ION3 trial so I thank you for sharing. Good Luck!

HR · Senior Member

I'm with Jill, Santa is on the way. Good luck.

Cinnamon Girl · Guru

Best of luck, Karen, looking forward to hearing some good news! Santa`s on his way! smile

Karen · Senior Member

WooHoo Tig...I will be waiting with the cookies and milk. Thanks

Tig · Admin

Have faith Karen! Keep up the positive attitude and we'll keep sending you all the good thoughts and energy we can muster!! My Santa Radar is pinging your location, that's a great sign of things to come! biggrin biggrin

Karen · Senior Member

12 week blood draw today...Whew! I am sure hoping that Santa stops by my house with his big bag of goodies-with an invite to next years clean, clear, no more hep c party in March.

Matt Chris · Guru

Karen

That makes complete sense because every trial patient can cost these drug companies anywhere from $25,000 and up when you add in all the expenses.

The whole HCV drug trial system really relies heavily on the last link in the chain, the local Doctor, nurse and lab to make it successful for the drugs company and having good relationship with the patient is one of the most important elements in successful reporting and recording of trial results.

Karen I give you kudos for sticking it out with some of the bad nurses you had during your trial.

Votre ami dévoué(e)

Matt

Karen · Senior Member

....There was a question floating around a few months ago about "Why Gilead was "blinding" test results at the end of their study"?

My nurse told me today, that week 4 and 12 are the MOST important visits of the whole study-DO NOT MISS YOUR APPOINTMENT. That if a patient does not show for these weeks the study "must" document the results as "failed", regardless if the patient is undetected or not. What they found from the past, once week 4 showed undetected many patients did not show for their 12 week follow-up. This information was offered-not solicited.

Thought I would share....

Karen · Senior Member

Matt-Merci pour votre soutien continu

-- Edited by Karen on Tuesday 1st of October 2013 09:18:43 PM

mallani · Guru

Congrats Karen. Another one done and dusted. Good luck with the VL tests to come, but I'm sure you will be fine. Cheers.

Matt Chris · Guru

Karen wrote:
WooHoo
"DONE"
Knocked out round one

Hey Karen WooHoo for for you, onward and upward toward SVR.

We feel the same about your contributions to the forum as well, as the more you give the more you receive.

Matt

Terry · Senior Member

Many Congrats Karen !!!!! I hope your journey from here brings you all you deserve. Good Luck !

HR · Senior Member

Great job Karen!!!! You've been a great support to all of us..It is nice not having to take that peach pill everyday:):)

Take care

Karen · Senior Member

WooHoo

"DONE"

Knocked out round one

To all the beautiful souls on this forum:

Thank you to all-that have offered your selfless act of kindness. You have lifted my spirits and overwhelmed me with your warmth and love. You never allowed the light inside, to ever go dark. You have set a courageous example of heart through your own stories, supported me with your wonderful humor and continued to check up on me during my time of despair...never once giving up on me.

To you...I will forever be grateful.

XOXOX, Karen

4-12-14 week(s) about to begin

Cinnamon Girl · Guru

Karen wrote:
WooHoo
"DONE"
Knocked out round one

Oh, Karen, you`ve finished...very well done and many congratulations to you!!! You`ve certainly had a rough ride over the last 24 weeks, and somehow your strong spirit has kept you on course with good grace and humour, you`re an inspiration to us all!

All the best of luck with your next results, wishing you all the best, as always. Sending hugs..x

Cinnamon Girl · Guru

Oh no, sorry about the osteoporosis diagnosis now on top of everything else, Karen, it really is time you had some good news for once! I`m glad you`re managing to stay objective, you`re a strong woman and an inspiration to us in the way you`re coping with all this. Your amazing attitude will get you through to better times ahead I`m sure. Do keep us posted, we`re always here for you.

Sending love and all good wishes your way. x

Ckncali · Veteran Member

Hi Karen,

I wish you did not have to go through all of these invasive procedures. The TB test seems out of place. They must have a good reason for wanting to do it, perhaps just to cover all the bases. Looks like they are being cautious and are going to make sure nothing serious is going on. It just sucks that you have to go through all this, including being scared about what is happening. I wish you the best and please keep us informed about what happens. Will be interesting to see if down the road after you finish the trial if this just goes away.

Take Care

Karen · Senior Member

Thank you both for your warm wishes...

My women's doctor is an amazing, loving person-she phoned me last night, her and the pathologist were so puzzled, they spent a whole evening searching high and low on what to do. The idea of the TB test came from a study done in the 20's based on a similar tissue finding...(testing Monday-should know by Tuesday/Wednesday) Pretty fascinating! She is also going to make an attempt to see if she can find out any information on this tissue finding and if or how it relates to the study. ...if so, maybe I can pass on the brutality (scheduled mid-Sept). I also found out this week that I have osteoporosis. My body is falling apart but I am still smiling...It is alway something, can only get better...right! :)

-- Edited by Karen on Saturday 10th of August 2013 02:57:49 AM

-- Edited by Karen on Saturday 10th of August 2013 02:59:56 AM

Cinnamon Girl · Guru

Hi Karen, strange about the TB test, but it`s definitely best to have all the checks done. This is certainly an unexpected `twist and turn` along your journey, and unfortunately it hasn`t been at all plain sailing for you. Some of these trial nurses sound unbelievably dismissive but at least you had a quick response from the study doctor, and quite rightly. It seems that sometimes their excitement over new data comes before their concern for the people actually on the receiving end of these new and still experimental drugs.

Do keep us updated, sending all best wishes to you, as always. x

Karen · Senior Member

Email sent by my doctor tonight..will speak to her tomorrow.

(The pathologist thinks we should do a vaginal pelvic ultrasound, endocervical biopsy and endometrial biopsy. Also, a PPD (TB test) should be done. It sounds like a lot, but better to be safe and make sure nothing is wrong.)

TB test was a little bit of a surprise..

Oh my!

Matt Chris · Guru

Hey Karen

Sounds like you had a very eventful day at the clinic.

Actually you might have woke up one of the sleeping giants in trial management , very good time to remind them to treat us like a human being instead of a lab result. Good time to be a advocate for us patients . You know what I mean.

From there quick response to you it seems they might have something personal at stake or at least their clinics relationship with Gilead.

I hope all turns out well for you whatever you decide.

Matt

Karen · Senior Member

Week 16...

I reported my gynecological findings to the study nurse-explained that I was not concerned, however, it does raise questions worth discussing.

Initially, when I had spoke with the doctor running this study, I explained that I had concerns about Hep C drugs (not just these-but any Hep C drugs). What good is having a gorgeous liver if the drugs cause cancer, heart or some other kind of crazy disease. When I explained this to the study nurse in a washed down version-she stated that if I had a fear of what would happen than I should have never volunteered for this trial...WHAT! I calmly explained the sad state of our medical community - they do not deal with the whole person but just their area of specialty. She said she was glad that one doctor did not do everything..ah yeah! She just did not get it, I decided to shut up and behave.

When I came home, I emailed the doctor, he phoned me right away, impressive. I explained that based on our original discussion (long term issues with the drugs), the fact that I am UND for 12 weeks (trials are now 8 and 12), that my liver was in pretty good shape to start..that I am thinking about removing myself from the remainder of the trial (8 more weeks). He asked if I would be ok if the head of the trial department could listen in..I agreed.

They are both very excited about the outcome of these new drugs.."ecstatic" would better describe their tone. In the many years that they have been conducting trials on hep c drugs this is the first where they have not seen any ill effects at this stage. He also said that this is one of the few trials that he has seen where the patient is privy to the test results-meaning, if I did not know I was cleared of the virus I would not be thinking of coming off...point well taken. He will review the pathology report and let me know whether it has anything to do the meds. He closed by stating that it is up to me if I want to end treatment-there is no way of knowing what lays ahead. I guess I have a big decision to make-one that no one can make but me!

-- Edited by Karen on Wednesday 7th of August 2013 02:16:33 AM

Misfis · Veteran Member

Karen wrote:
wow, Karen, that must be a little scary. I've been wondering about the results of your test, and am glad you are sharing this with us. Keep us posted, and take good care of yourself.

Received a call from the Doctor yesterday, the biopsy came back showing granulation tissue: (new connective tissue and tiny blood vessels that form on the surfaces of a wound during the healing process.) She is puzzled! Wants to send it to another pathologist for a further exam with a list of the meds that I am on. Also suggesting another biopsy + ultra sound depending on the second results. I will report this to the study nurse on Tuesday. Big mystery here!
Hey JoAnne...How are you? Hope you kept your appointment. Did all go well?
Hi Misfis...Thanks for the encouragement. Sometimes we are so focused on one area of our bodies (in this case the liver) we fail to realize there is a bigger picture to consider.
Hi Sofi...Thanks for your support. Wonder if you have something similar going on?? Hope your doctor agrees to an exam...
Hi Ckncali...Interesting thought about the possible culprit...which drug, if any could it be??? I have another 9 weeks to go...Heavy sigh! Sorry, cannot remember-are you finished?

Karen · Senior Member

Received a call from the Doctor yesterday, the biopsy came back showing granulation tissue: (new connective tissue and tiny blood vessels that form on the surfaces of a wound during the healing process.) She is puzzled! Wants to send it to another pathologist for a further exam with a list of the meds that I am on. Also suggesting another biopsy + ultra sound depending on the second results. I will report this to the study nurse on Tuesday. Big mystery here!

Hey JoAnne...How are you? Hope you kept your appointment. Did all go well?

Hi Misfis...Thanks for the encouragement. Sometimes we are so focused on one area of our bodies (in this case the liver) we fail to realize there is a bigger picture to consider.

Hi Sofi...Thanks for your support. Wonder if you have something similar going on?? Hope your doctor agrees to an exam...

Hi Ckncali...Interesting thought about the possible culprit...which drug, if any could it be??? I have another 9 weeks to go...Heavy sigh! Sorry, cannot remember-are you finished?

Ckncali · Veteran Member

Hi Karen, I hope the unusual growth turns out to be benign and not a problem for you. Since other people on the RIBA arm are experiencing unusual growths and you are not on the RIBA perhaps this unusual growth symptom is caused by either the sofosbuvir or ledispavir. Does anyone know much about Ledispavir and how much testing was done on it prior to giving it to us? For those of us on the RIBA arm we always assume all our symptoms are from RIBA but maybe some of the symptoms are from one of the other drugs. Karen please let us know how this all turns out. How much longer do you have to go On the trial?

sofi moore · Veteran Member

Hello Karen,

I hope it is nothing to worry about and will clear up on it's own. I am on the 8 week trial with ribavirin and there are nodules on my lungs. My primary doc is sure it is from the drugs. After a few tests he believes it is all benign and may go away post treatment. There is also a growth under my skin on my right calf. I guess this Friday, I should tell my doc I need a gyno exam. Thanks for sharing and I hope it is all ok. I will be praying for you.

Sofi

Misfis · Veteran Member

Good for you, Karen, for being informative and proactive for the benefit of all of us. Hope it's nothing to worry about, and I know you will keep us posted!

JoAnneh · Guru

Karen,
First of all, sending you up in prayer!
Keep us posted.
Also, I have appointment Tuesday and thought
Of canceling till I read your message.
I go regularly but have had few issues and
Scheduled appointment for post tx.
Thanks for sharing. Hope u have results
Soon.
Love, JoAnne

Karen · Senior Member

Hi Jill...

Thanks for sending all your love:) I am actually doing well...other than tired and weird things growing, no complaints.

It was a little unexpected and not! These sort of things were some of my early concerns. I tried to have this discussion with my study nurse-what unusual things have they seen due to the drugs but that was not going to happen.

Just thought this was good info for women-need to stay on top of our exams...

Thanks again...

Cinnamon Girl · Guru

I`ll be thinking about you, Karen, and of course wishing you the best. Do let us know the outcome, and in the meantime try to stay calm, I`m sure there must be a very high chance it can be dealt with easily and without any further cause for worry.

Thanks for sharing this, it can`t have been an easy post to write. Sending love. Jill x

Karen · Senior Member

Attention Ladies-Gentleman close your eyes. Had my yearly gynecological exam yesterday. The doctor found an unusual growth in a very strange place on the cervix. She took a biopsy and stated that after she gets the result this "needs to be reported to the Hep C study doctor". I will keep you posted on the outcome.

The purpose of sharing this information is not to scare or frighten anyone but to remember we are more than our liver. For many of us, the drugs we are taking are new or part of a trial long term side effects are not known. We must be diligent about taking care of ourselves..our "whole selves".

-- Edited by Karen on Saturday 27th of July 2013 12:45:31 PM

Hep C Discussion Forum

Legal Disclaimer: