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131114 tn?1380083190

Going back in

hello friends!
well this is it, the week i go to the research center nearby to delve back into getting well.
after twice SOC, i am hoping to hear some good news. oddly enough my last doc did NOT get a liver biopsy from me- not sure why- but i did get a scan and my liver looked good. i  have learned so much from all of you thank you for being here. i hope to be able to ask many more informed questions now and bring back some stats here for advice and support.

my life is limited by having this virus. i am afraid to work too hard, i am afraid to touch people, i am afraid to get in a relationship. i realized last night how much it has affected me regardless of my attempts to not let it. i have always kept a good attitude, but the lurking undertow of this is a definite bummer. i am so hopeful that i can find out exactly where i stand and if there is anything i can do- if i have time. i will not be able to  take the SOC again after twice having cleared and relapsed. i lost 4 years of my life, and live alone.

if any of you have any suggestions as to exactly what to ask as far as trials for the newer PI's without INF, plz advise me now. my appointment is Thursday. i am scared but relieved to go- it's like busting a deep abscess.

thanks for all the time y'all spend informing and uplifting us all.
ja
23 Responses
223152 tn?1346978371
I wish you the best of luck.  I do believe there are trials coming up.  Whether or not they will include INF is another matter.  Is that a deal breaker?  I think you had good response to INF.  I remember that you (like me) seem to harbor very low levels of viremea while treating -- below detection levels.  

http://clinicaltrials.gov/ct2/results?term=&recr=&rslt=&type=&cond=%22Hepatitis+C%2C+Chronic%22&intr=&outc=&spons=&lead=&id=&state1=NA%3AUS%3ATX&cntry1=&state2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=

I guess I should have shortened that -- but that is the link to look at trial fro Hep C.  YOu can click on each trial and see where it is being offered.

Good luck.
bean
Avatar universal
Hi,

Go to www.clinicaltrials.gov and you can look up the trials that are available in your area.  Also the Hep C Advocate is a good place for information about trials and tx in the pipeline.  Good luck with your visit.  What Center are you going to?

131114 tn?1380083190
i will be seeing a doc at the camden med. center in san antone.
they are a transplant and research center, so i feel i will get some detailed info, long as i know what to ask.
not really too concerned about the trials, mostly things like genetics,
and all the little details that help determine which tx may work!
that's what i'm needing more info on- i have seen a lot of references to genotype, sub-type, and more...

i did clear both times on the INF, but i can not become that sick again, i almost lost everything the last two times. if it's so bad i have to do something, i will need to revisit those options. but i'd have to sell everything and move.
i am 120 miles from the center with no help! so i can't take it lightly.
i was so sick last tx, i swore i would never do that again- but you know how that can change!
thanks
131114 tn?1380083190
Do you guys know what all tests i should ask for?  or what to expect him to ask ME?
thanks!
JA
163305 tn?1333668571
Personally, I think you might want to address your anxiety problem. Hep C is only spread blood to blood. Why would you be afraid to touch someone? The virus hasn't stopped you from getting into a relationship~ your unreasonable anxiety has.

Many of us have had long term relationships, born children, and raised them without even knowing we had the virus. Our families didn't get it from us.

I'm not trying to be mean but you really should think about talking to a doctor or therapist about this issue. Your fears are unreasonable.
                *                   *                      *
Obviously you need to know the current health of your liver. You'll need a biopsy and a complete lab.

The main complaint from people doing trials seems to be not getting the support they need when something goes wrong or they have severe side effects, etc
Often they have no one to call or have trouble getting copies of their test results.
It's really important to get these things clear before beginning. I'd almost want something in writing.
131114 tn?1380083190
hello hawk- i was being a bit dramatic about touching people- i have found however that i have not pursued a personal relationship due to fear/shame about the virus. i got married about 2 years ago with full disclosure but he left shortly thereafter, i think my illness had some influence on his decision.

as to the trial aspect- i am not sure i will do one, i am trying to gather facts, this is a research trip- but you brought up a good point- support. i live 120 miles away, so these are all issues i am hoping you guys can bring to light. this is part of the gathering process here....

thanks for your concerns about anxiety, indeed since i was in an f-5 tornado, i have had some ptsd, but it is finally subsiding.
i have had lots of stress the last 10 years since my diagnosis and it do wear on a person- evern with counseling, meds etc.

i have been diligently addressing my issues, so no offense taken.
many miles to go....
131114 tn?1380083190
also before i knew i had the virus, i had committed relationships. it's easier when you don't know you have it!
163305 tn?1333668571
Whew~ I'm glad you didn't take offense. It's hard online where there isn't a face to read, if you know what I mean.

I put together a list for newbies to ask their doctors which you might want to look at in my profile.

http://www.medhelp.org/user_journals/show/360204/guestions-for-doctor-for-newbies-to-tx?personal_page_id=17823

As far as having lots of stress the last 10 years, well tell me about it, from a diagnosis of hep C AND decompensated cirrhosis to doing tx, relapsing, getting a transplant and finally doing tx again, the last 7 have been rather intense for me, as well.
But I'm still here looking at the beautiful blue sky.
131114 tn?1380083190
bean! thanks i looked at the studies and there is one, but you have to be completely tx naive to get into it- but at least i have some ideas what is current. i had that link, too, i have been so busy nursing my cat, time got away from me.
THANK YOU so much for putting that together and getting my research started!
hoping you are doing great,
ja
131114 tn?1380083190
oh no, i know we all have our stuff- i am just grateful to have this support- you guys have been here at least as long as me if not longer.
i wish i could help everyone...
i hope the new tx will kick that bug OUT!
and you have probably been in deeper than most of us. i knew that.
but i am glad you reminded me of your courage and spirit!
keep sky gazing and i'll report in after my visit..

(i did not find a trial in the nic. but it's a start.)
446474 tn?1446347682
You might want to take a look at this...

"Maximizing Your Medical Appointments"

Here are some tips on how to maximize the time spent with your care provider.

1. Be prepared. Take the time before your appointment to write down all of your medications, any pertinent allergies, a brief medical history, and your chief health concerns. Include the names, addresses, and phone numbers of your primary care provider and any specialists that might be linked to your current medical issue. For information on this, see HCSP’s Factsheet Being an Effective Health Care Consumer: Your Medical History.

2. Before your medical appointment, write down your questions and prioritize them.

3. Maintain your own health records. It can really help expedite matters if you bring copies of your most recent pertinent medical reports.

4. Make eye contact before speaking to your medical  provider. Once you
begin speaking, your provider may take notes. This does not mean s/he is not listening.

5. Before you start with your list, ask how much time the provider has for
questions. Respect these limits and you will benefit in the long run.

6. Prioritize your health issues. Be brief but clear.  Start with the most important details and if there is time, you can add the less important information at the end. If you have any fears or feelings, discuss them. It can be reassuring to learn that your symptoms have nothing to do with some disease you have been dreading.

7. When describing your symptoms, begin with the general picture and end
with the specifics. Example: My stomach hurts. I feel nauseous in the morning.

8. Ask for clarification. If your doctor uses words or explanations you do not  understand, ask her to clarify or simplify her words.

9. Take notes. If the doctor makes suggestions, write them down. Ask him to spell any words you might want to refer to later, such as a diagnosis, medication or procedure. If during the appointment you don’t have time to write everything down, write your notes immediately after while sitting in the lobby or your car.

10. Take a friend, loved one or advocate. This is especially important for appointments that may be long, complicated, or not routine. Ask your
companion to take notes for you. If it’s alright with your provider, you can also audiotape the appointment.

11. If medication is prescribed, ask what the common side effects are and how the medication should be taken.

12. Express your reservations. If your doctor suggests a treatment plan that you have some concerns about, let her know. Sometimes these
concerns can be easily addressed.

13. Ask if there are any alternatives. If your doctor makes a treatment suggestion and it is not one that you are prepared to follow, ask about other options.

14. Keep an open mind. This can be your strongest ally. It is amazing how many people will avoid a medication because of their fear of side effects, only to find out later that the reality was not anywhere near
what they imagined.

15. Ask the physician if there are resources or support groups she would recommend.

16. Discuss the follow-up plan. If you are scheduled to have diagnostic tests, ask the doctor when you can expect the results and how these results are conveyed to you. When does your provider want to see you
next? Ask if there are any signs or symptoms that could be urgent and should be reported immediately. If the results are going to be disclosed at your next appointment and if there is going to be a long interval between appointments, ask how you can obtain earlier results.  Additionally, ask the physician what is the best way to contact his office should a need arise that may not require an office visit.

17. If this is a follow-up appointment, ask for copies of diagnostic test results and surgical reports.  This sets a standard that you are the manager of your health care.  It also makes it easier to give copies to
other health practitioners.

18. If you run out of time and still have more questions on your list, ask how you might be able to get the answers to your questions without disrupting the physician’s schedule.  Ask if you can leave a copy
of the questions along with the request that they call you back within a specified time frame.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf

---------------------------------------------------------------------------------
Some questions to ask your doctor...

Do I need to be vaccinated for hepatitis A and hepatitis B?

What is my genotype? What does my genotype mean?

Do I have liver damage? If so, how much liver damage is there?

What are my treatment options?

Is there one treatment you think is best for me?

Are there any clinical trials?

What are the benefits of each treatment option?

What are the potential risks of each treatment option?

How can I protect the people around me from hepatitis C?

Do I need to start treatment for hepatitis C now?

How will this treatment interact with my other medications?

How will you assess whether the treatment is working for me?

What should I do if I have side effects? How can I manage the side effects?

What are symptoms to pay attention to and look out for?

How likely is it that I will develop cirrhosis or liver cancer?

If I do not start treatment now, how often should my liver be monitored for liver damage?

How often should I see a liver specialist? Primary care physician?

Cheers!
Hector
1652596 tn?1342011626
i had the MOST fantastic care during my clinical trial.  i was always able to get questions answered and obtain copies of all my labs.  they were always there for me.  i'm glad i did it thru them because i received excellent care.  best wishes.  belle
131114 tn?1380083190
thanks belle- hope your trial worked!!
i am off and running...
Avatar universal
You've received some great advice above.  In addition to posting on this forum, I would also suggest getting involved with a Hep C support group in your area if you can.  Hep C can be a very isolating disease, due to both stigma from others as well as stigma those infected place on it.  My husband certainly places a stigma on himself and has some of those unreasonable anxieties as well, even though he does have the logical knowledge, the emotional knowledge is different.
Advocate1955
1652596 tn?1342011626
i go for my 12 weeks from EOT next week.  i've been UND so far.  i hope it remains the same.  good luck to you.  belle
131114 tn?1380083190
hey y'all thanks-
one of our posters sent me a comment about the genotype, on a much more detailed level, as far as tx impact. can anyone add light to that info? what all will i need to ask about that when my tests come back?
great help from everyone...
131114 tn?1380083190
i am glad to hear i am not the only one with these issues. when i did not know i had this in me, i was acting in confidence and social ease- now it's tempting to feel tainted- like you said it's not intellectual!

being a christian, i can put some of this in the context of being saved by the blood - clean blood and clean mind - i lean on that for now, but fear crouches at the door. it is a constant faith walk. but those muscles are getting stronger!

also this is it for me as far as support group- i moved way out into the country before i knew all this and closest group is 100 miles!!!
so thanks to all of you.

i hope your husband is doing better?
ja
Avatar universal
Thanks for the well wishes.  My husband has treated three times since he was diagnosed in 2007, and all three treatments have failed.  He had to stop the third treatment in April.  There are no other treatment options for him right now.  Although he has Cirrhosis, his liver is still functioning well (compensated).  We are actively looking for a good clinical trial for him, which he will do if one becomes available.  We don't want to run the risk of his liver becoming decompensated between now and when a new treatment option becomes approved.  As far as stigma goes, I think it's something he carries inside of him, the worry that people will think badly of him.  Our kids and I know, and we support him, and he has a great hepatologist, and a great Nurse Practitioner.  Other than that, he hasn't told anyone (other family, friends, co-workers, etc.).  Since he's not on treatment right now, physically and emotionally, he feels better, but of course there is still worry and anxiety about what the future holds and not having any treatment options right now.  He does lab work every 3 months, an ultrasound every 6 months, and sees his hepatologist every 6 months to monitor the health of his liver until a clinical trial or a new treatment becomes available.  I have been trying to get him involved in a local advocacy group regarding Hep C.  I thought that perhaps if he would become more involved in encouraging people to get tested for Hep C or seek treatment for Hep C, maybe that would help him realize that he isn't isolated and doesn't need to feel stigmatized, but so far it's been a "no".  
Thanks for asking.
Advocate1955
Avatar universal
God bless u and praying u will get good response and beat this desease . treatment is hard but stay strong and get well soon. It would be hard to live alone and do this some days are very low in spirit. I pray you can funtion and get wells son.
131114 tn?1380083190
it's funny how that is- i actually tell most people unless they are strangers or not very close. and yet- deep down inside i can still feel that dark spot on my soul- just knowing maybe somehow i might infect someone accidentally, which is highly unlikely, but that blemish it is almost as insidious as the virus!

does your husband communicate on the forum?

what tx has he tried and what is his genetic profile?
i am always willing to lend a  hand or ear, to help.
peace be still!
JA
131114 tn?1380083190
thank you!
Avatar universal
No, my husband doesn't post on this forum.  His first therapy was SOC (Interferon and Ribavirin).  His second therapy was daily injections of Infergen (another variety of Interferon) and an increased dosage of Ribavirin (1400 mg.).  His third treatment was triple therapy with Incivek.  He has Hep C Genotype 1a.  He's 59 years old, and he's Hispanic.  You can read all about my husband in my profile and/or in my journals and/or my Hep C tracker if you like.
Advocate1955
131114 tn?1380083190
oh yeah that's right, i remember reading this a while back. gosh so sorry he has had such a hard time and i am glad you are finding some outlet here both giving and receiving support. i have heard the infergen is pretty rough.
i am 59, too so i can relate, but i have only t
x'd 2 times both SOC.
i am hopeful that we will all find some solutions in all the newer research and success stories. i have friend who survived stage 4 cancer due to a breakthru in treatment, so it does happen!!

keeping the faith and trying to stay healthy as possible in the meantime.
take care
ja
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