If she has never done treatment before, I'd suggest trying the new oral meds which are currently in trial. There is one recruiting in L.A.
In a trial, all costs are covered.
Here's some info:
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01435044
Contact: Saundra Kirven 919-237-7106 919-237-7106 ***@****
Los Angeles, California, United States, 90036
Principal Investigator: Peter J Ruane, MD
It is nice of you to being willing to help your mother out. There are some short term things you can do which other can help you with, I want to focus on the full picture of what your mother may be facing in the future so you are aware that she needs a long term plan regarding her health as well as just concentrating on hepatitis C treatment. I don't pull any punches in the things I say. I am just saying them to impress the true situation of a person with cirrhosis and what is likely to happen in the future. My opinion is based on my own experience with hepatitis C and liver disease and now waiting for a transplant. So take it for what it is worth. Others will have a different points of view.
Having cirrhosis and not having insurance is a dangerous position to be in. I am assuming she is in the early stage and has no complications from her liver disease other then fatigue. No ascites, encephalopathy, bleeding varices, etc. Other on the forum and direct your mom to no-cost meds. The issue is that a person with cirrhosis is very likely to have major side effects from treatment. This requires constant monitoring and possible very expensive helper meds and transfusions to get through 48 weeks of treatment. Treatment for patients with cirrhosis can not be done "on the cheap". And it can cause treatment failure and in the worse case liver failure. (liver failure only happens in less than 10% of patients but it is a possibility). Which is why the recommended treatment for a cirrhotic is to go to a hepatologist at a liver transplant center to be treated for their hep C and possibly be list for transplant in case the treatment causes the liver to fail. I summary, there is no safe way for a cirrhotic to be treated and have there health managed cheaply. I have tens of thousands of dollars in tests, health management during a year. A liver transplant will cost $100s of thousands of dollars and that person must take medicine that is expensive every day of their lives afterwards.
Your mother should be applying for disability so she can get Medcare or Medicaid. It can take up to 2 years so be eligible for these programs if she is not 65. She should be planning for the future. Hopefully the new triple therapy will work and her liver can heal itself. It not living with cirrhosis gets more expensive all the times as complications get worse over time.
One note. Is your mother being screened for liver cancer even 6 months? These scans can be many thousands of dollars. If not she is risking her life by not catching the cancer early. All patients with hep C and cirrhosis have an increased risk of liver cancer as time goes by. That is one example of the monitoring process that needs to be performed on all cirrhotic patients. They are many other also.
Unfortunately people with cirrhosis need the most expert medical services available of course these services are also the most expensive. Otherwise you are risking failed treatment, disease progressive, life threatening complications from End-Stage Liver Disease and eventual need to a very expensive, life changing liver transplant.
I know this from personal experience and have been living with cirrhosis for at least the last 4 years.
Good luck to you and your mother Chris.
Just a few things I would add.
First I would check out the incivek program; you may be able to get your mom on a program to get this drug. If she makes less than 100K annually (!!!) she may be qualified. : )
There are also programs for SOC.
I would look into issues with insulin resistance, high body mass index and il28 genetic markers; these may predict your mom's immune response. I would consider doing a lead in before attempting a PI; either Incivek or Victrellis. It may be useful to be informed about the trajectory of immune response before adding a third compound that (should insufficient response and failure result in this TX) could result in resistance to PI's.
By this I mean after several weeks of predosing SOC you'll have a good idea as to whether you are in the 40% chance of success category or the 70%.
As Hector responded; your mom has an issue with cirrhosis. If she is to treat she needs a VERY good and experienced doctor who has treated many cirrhotics and is familiar with the new PI's.
Your mom needs to TX VERY soon, but I would make sure that her iron is IN RANGE (not too high or low if possible, get her Vit D levels up understand and deal with high BMI or IR issues well before TX, including an exercise regimen (even if it is *merely* walking each day)
I know a few stage 3/4's who have done this and have succeeded when they have failed past treatments. One stage 4 predosed and RVR'ed and then added incivek for 12 weeks. It can be done.
Good luck and give this treatment including work up to treatment, inluding getting a great doctor your all.
I was going to add the notion of a trial. The price is right and generally you get excellent care.
In this situation though your mom does not appear to have a second parachute if a trial were to fail. One of the characteristics of trials is that the the design construction is built to differentiate responses; in treatment times, dosages, drug combinations. As a result, some arms may fail and some may succeed. You would want to be very selective about what trial you participated in.
By contrast, if you were to treat privately you have a measure of control; you will only treat with proven treatments, may have access to rescue drugs, may be able to deviate from norms if need be and will not be driven by the confines of trial design.
The flip side of that is that there are some very good compounds being tested. The issue as it now stands is that they are still figuring out the best way to combine these new compounds.
First, thank you all much about your input! I really appreciate, and make me feel real better.
Like you said, it will be both important to design short-term things and long-term things. And I believe that the way I should focus on.
For the stage of her cirrohosis & more detailed of her liver condition: I believe that it should be at early stage, and there is no ascites. However, I forgot to mention one thing before, she had a 'radiofrequency ablation' surgery to get rid of a 'good' small tumor (not cancer) (2mmX1mm) on her liver one year ago, and after that, she checked 3 times (every 3 months) already, and recovery is very good. And the size of her spleen is getting smaller than before (now the size is the max normal size). In her report, there is a parameter called KPA, which is used to measure the cirrohosis, and the value is 11.9, and her doctor still allows her to use Infer & Riba to kill the virus.
I don't know what kind of monitoring & special services that a good HC doctor will require to do, and what is the normal price. As I know, every time when my mom goes to see doctor, she routinely will do: blood test to see her blood parameters & RNA numbers; To see the liver condition, the doctor asks her do one of these 3 options: ultrasound test; or MRI for more accurate result; sometime the CT; only one time, doctor needles her liver to get a piece of live liver issue sample to see if her tumor was cancer (swear to the God, the day was my worst day in my life to wait for the result). I don't know whether a HC doctor uses the same kind of services or more.
You said 'Is your mother being screened for liver cancer even 6 months', what do you mean screen here? does it mean, MRI or CT exam?
Another suggestion from her current doctor is: use Infer & Riba life-long as long as liver condition is OK. The point is, instead of trying to get SVR, this approach is to control the level of the virus. Therefore, let's say use Infer once a month instead of once a week.
Also, any recommendation for an experienced doctor? I will try Tarek Hussanein, who are recommended by the forum next week. I aslo contacted Karen Lindsay, but she is not taking any patients anymore. Any suggestions? or suggestions of how to find an experienced one.
Thanks again, and best wishes for you!
Thanks so much for your input. I read your input very carefully, and still have some confusions, please explain a bit more to me:
' I would consider doing a lead in before attempting a PI', what do you mean doing a lead here? I assume that I should do some blood test to see
the issues like insulin resistance, and body mass index to see if she does belong to 40% group or 70% group?
Again, how can I find a VERY good, experienced doctor in my local area (LoS Angeles area)?
'Your mom needs to TX VERY soon'. Does this mean: the earlier use the new TX, the better odds we can have?
Thanks again, and best wishes
what I mean.....and I have no medical credentials at all is that as a stage 3/4 most doctors would recommending treating now, very soon. In terms of drugs that will be approved I'm not sure that any coming are going to be huge improvements. A third PI should soon be approved TMC435, but whereas it may be a better compound, it still is not yet approved, and once it does it may be as much as 5% better efficacy; we will see. It *could*, I'm uncertain of the timetable. It could be a year out, or even more.
You situation is that the doctors can assess her health and weight her risks of waiting and factor these into a plan that will best serve her. I can't really make recommendations, and if I were to you would need to understand them for what they are, not medical advice.
To some extent the sooner one treats, one always has a better chance of success. Stage ones (all other things being the same) always will have a better chance than stage 3/4's, non-cirrhotics, a better chance than cirrhotics. In that regard sooner is always better than later.
On the other hand.... if a patient is insulin resistant it may lower their immune response, and dealing with the issue first might improve ones viral response and thereby improve ones odds of a cure.
Just as one might check and have dental work done before starting a TX it may also be worthwhile making vit D levels are up, or that a regimen of light exercise is underway. All of these things may add up to increasing the chances of success; each one is incremental and to some extent....unproven, more like associated with improvement.
So....to some extent waiting and clearing up any possible issues before treating is an exception to the rule that sooner is always better.
The other obvious exception might be to wait if you could get into a great trial. You would have to read up on the trials and discuss them with the doctor. Not all trials are good, not all compounds will succeed or even be safe. Even in a good trial one or two arms of the trial may not be good. there is both potential risk and benefit.
The "lead in"...... once your mom takes a PI, such as telaprevir or boceprevir there is a tendency towards developing a type or resistance that one sees with antibiotics. In general, if one was to treat for 4 weeks and fail/ stop TX the level of resistant virii will be low. After 12 weeks of triple therapy and a stop/failure nearly 100% of the patients who recieved those drugs had resistant virii. That means that it is thought that retreating using the same or similar drugs will be ineffective for 2 or three years following their use. In other words, if she were to treat with one of these drugs and fail, it might be ill advised to try to use them for three years; they might be totally or partially ineffective. At this point no one really knows.
Therefore..... I am saying.... in that she could be in a group that is harder to treat, if you improve a few things before starting it will enhance your mom's chances of success. As I mentioned..... she really wants to treat and succeed if she uses the new PI drugs.
A lead in is used as a part of boceprevir/Victrelis. They give Interferon and Ribaviren for 4 weeks and THEN add the new third drug. IF people do not respond, if they have virtually no immune response, then a doctor can decide whether to stop the treatment before adding the new drug; the PI.
They do not do this "lead in" with Telaprevir/Incivek. It is not that it was detrimental, it just was not clearly superior. (although it seemed to be by a few percentage points). The possible superiority of doing a lead in with Incivek is that (I believe) it would offer a higher success rate than one offered by Victrellis, and that your doctor could ....before administering the PI/ new third compound..... make that call and decide if she is going for it or will wait for a treatment which she has a better chance of success.
IF she doses a PI and fails she probably has no second parachute. She probably has to wait for some time either for a better TX or for her resultant resistance issues to recede.
On The Other Hand..... if she does a lead in and her response is sub par....and the doctor decides to NOT TX with a PI, she can wait for a better treatment and her options are open, she can get into a trial. IF she is a PI failure, she probably would not be able to get into a trial, and to some degree her chances of treating with several antivirals could be compromised some.
Sorry for the long answer, but it is a little complicated. Nothing is known 100% at this point on many of these issues. Having a good doctor is the best assurance of success but you can discuss any of these issues with them. They may agree or disagree, but keep in mind; they have the credentials, first hand experience, and your mom's medical records.
Good luck and hope that this helps you understand some of the issues.