Job lost, am forced to cut treatment short

[slideman]

The company I worked for  has had to downsize, at least this is what they are telling me. I worked construction since 84, and finally got a desk job. Tx made it impossible for me to be 100%. So now I will  have to put  my tools back in my truck and go back to work. I can make it to the middle of December to make my 24 wks, but no way can I make it to June or July to achieve 48wks as recommended
. I did have eRVR to inc and my biopsy was 1.5 and 2. It is my second round of tx the first being 10 yrs ago with mixed results. I was und at one time, but the whole thing was a big mess of incomplete records ect..... Any body have any data for second timers at 24wks? I hate to quit early but there is really no choice.

[slideman]

Unfortunately, the company is a small business with around 40 employees depending on work load at different times of the year. Without risking a political discussion, I will say with first hand eyes on experience, the Gov. and Banking system are NOT pro small business at this time. Thats why my job is gone.

[frijole]

I am very glad you are still UND after 7 weeks off the INC.  I wish there was a way around quiting treatment now, but I still think you have a good chance.  I don't know how anyone can do manual labor on tx.  I have been able to work thru tx only because I have a desk job.   My brother is hep C + and has never treated because he is afraid he could not work (he is a commercial fisherman).  I certainly can't tell him otherwise and I admire anyone who is able to do it.  Maybe something will come up for you in the next month.

frijole

[Advocate1955]

It seems as though your best chances of SVR would be to continue therapy.  If you have disclosed your medical situation and treatment to your employer, I think they may have a legal obligation to provide you with medical leave under the FLMA (if the company has 50+ employees).  Under the ADA I think your employer may also have a responsibility to provide reasonable accommodations to you, since you have disclosed your medical disability, such as possibly offering you a modified schedule.  If they are downsizing, would they be willing to consider a workshare plan so that two employees could work part time?  At my husband's place of employment, when work has been slow, his company has made arrangements with unemployment to qualify employees for unemployment and share hours between employees.  Can you request one of these options in order to keep your medical insurance, and go on disability so that you can finish treatment?  You're very close to SVR now, and I think you should try to explore ways to finish the treatment.
Advocate1955

[slideman]

You are correct about prior treatment, we still dont know what to make of it all. It seems like fate has stepped in and I will have to play the only cards I have. I got a call today from the Dr. I  requested a vl test at wk 19 because my first tx was difficult to determine and I have a strong desire to know whats going on. It is still und. I started tx July 1rst or what ever that fri would have been. So far so good!!

[willbb]

I remember from your previous posts that you and your doctor were ,not entirely sure what to consider your prior treatment response to be,and given there was some thought to them suggesting you were a prev. "partial  or even possibly a prev. "null" responder  and most likely not a "relapser"(and sorry if I have this info. incorrect)  the recommendation to you was to do the 48 weeks as per Incivek dosing instructions.

Having the eRVR in your pocket and being able to do the 24 weeks is certainly a plus in your favor,however as your doctor has suggested and the drug company has recommended after many years of trial results anything less than 48 weeks is an experiment on your part,one that hopfully will result in an SVR.

Sorry to hear about what the employment situation has forced you to do  and that  this treatment ends up being a succesful one.
Best..
Will

[pcds]

You have the 24 weeks, chances are very good that is what you need to do.  I also have a unusual prior tx hx buy my doc saw I responded well to SOC and rec 24 weeks of 3x if undetected early like you.  These are powerful drugs.  We are all part of a great test trial as the first in the public to massively use 3x.  Lots will be learned this next summer.  

[JasmineT]

Hey slide man, sorry to hear about the job situation.  I had some stats bookmarked that may apply.  See table 11 in this link and read the info before and after.  

http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm

"Among prior relapsers, 76% (218/286) achieved an eRVR and of those 95% (208/218) achieved an SVR. In an earlier, dose-finding clinical trial, 78% (52/67) of prior relapsers achieved an eRVR and were treated with 24 weeks of peginterferon alfa and ribavirin (T12/PR24); of those 94% (49/52) achieved an SVR."

Looks like pretty good odds for svr.

[curiouslady1]

I have a different opinion.  It seems to me that, should you relapse again, you may be eligible to go on an all oral treatment preferably with PSI 7977 which you would not have developed a resistance to.  PSI 7977 has a high barrier to resistance and I understand that they will be having trials for tela/boce failures.  I say this only to let you know there is a possible/probable cushion should you fall and need it.  Meanwhile, if you are 24 weeks that is quite a lot and I say bravo! You may very well be headed to SVR or at least a period of extended rest for your liver.  You know how much you can handle and when it is time to stop.  It sounds as if you have thought all this through quite a bit and yes, I agree you need to be alert to access meaningful work.    

[Livinontheedge]

Slide,  Praying you make 24 weeks UND & Stay there.     All things are Possible!  Dont get a closed mind, keep it open.    You havent went this far for no reason for the doors to be slammed in your face.    Praying that all things work out !    Carrie

[belle19]

slide, i'm hoping that everything works out for you.  i'm sending you some positive vibes.  hang in there.  belle

[working dog]

i don't really mind working....in fact i like to work...the funny thing i notice about construction is i use to think it would be a drag if i lost my shirt and only knew construction...did that big time years ago.....now at almost 60 its really neat to know...the older i get the more i like knowing construction...i have plans on pushing hard through my 60s..employing creating jobs ...starting new businesses ..thats another reason why i'm concerned about brain fog from tx...i'm keeping my fingers crossed....good luck slide...billy

[slideman]

I can feel your pain. Went from being very forceful on the job, to quiet. I know when all this is over we will be back on the job and all this just a bad memory. Hang tough brother, it cant last for ever!! Gettin old aint for sissy's!!

[working dog]

this is a drag now but in the long run could work out great for you if you svr...i know about the work thing/constuction...i too don't know if i'll be able to stay on tx because of the need to work....i know i'm gonna owe out money no matter what... work...i can't seem to get out of the 8s...not good...but i look at it this way..if i have to stop it may be a good thing...i most likely will svr at 24 weeks as you will too...the new drugs sound great to me...maybe only a few years away...now i have an eye issue to deal with..hopefully it won't be any big deal...good luck and hang in there....billy

[slideman]

I did have the riba the first time, but lots of info was left out of that too. I never heard to take it with meals then. The peg int back then was rough too. You had to mix it yourself...LOL I felt like Dr Frankenstein. The sides this time are way better than before. My brain fog has improved and the only real bad days I have are Sat and Sun. I inject on Fridays after I got home from work. I WILL make 24 wks, which is what it was going to be at first, but then the Dr began to worry about old results, so to be safe.....48wks. I could have done it had I been able to keep my desk job, but no way to do physical work on tx. I dont feel all that bad, just so  short on breath when I exert.

[EyesofBlue55]

My brother is on triple  tx with incivik.He treated previously and relapsed.His tx was 12 weeks of incivik and 12 weeks of peg and Interferon.He was und at weeks 4 and 12 therefore 12 more weeks of tx.He doesnt have chirossis.Why is you dr wanting you to do the 48???
  Like I agree with everyone here-dont stop.Call the drug companies and explain what has happened.Someone will help you to finish....cindy

[frijole]

I see, slideman.  I just sure hate you you to have gotten this far so successfully.  Perhaps the 24 weeks will be adequate.  We just don't know what will happen down the road, do we.  I could not make it without working for 6 months either.  I wish there were some alternative here.

Since your first treatment was so botched and they didn't test much maybe this one will have done the job.  Were you using ribavirin at that time or just the unpegylated interferon

[slideman]

I  will be able to go the 4 more wks to wk 24. My Dr wants me to go 48, due to the records from tx before which are a mess as the protocol back then was not the same, so they are struggling with how to classify me. I was und at 7 months, but only after they had me go to 2 shots at a time for 3 months. Its a mess, first I was on the old interferon that only lasted a couple days, so I had to inject 3 times a week. Then they didnt test vl until 5 months. They found virus then so I went to 2 shots at a time........a big mess, anyway based on that stuff they want me to go 48 wks even though I was und at 1 point.

[blondie717]

drug manufacturers often sponsor patient assistance programs for those that are uninsured or underinsured. A good website to investigate these resources is needymeds.com. Here is their home page; click on either ‘brand name drugs’ or ‘generic name drugs’ in the left hand column to see if the mfgr sponsors a PAP (patient assistance program). Here’s the webpage for tenofovir:

http://www.needymeds.org/generic_list.taf?_function=name&name=tenofovir

Their PAP phone number is [phone]; these programs are generally income based rather than asset based, so Joe will probably be allowed to own a home and car etc and still qualify assuming he fits the income parameters.
     I stole this from another post.  I understand the high costs of insurance. off.  I had good insurance myself. but I knew it would be dropped by a divorce or a lawsuit settlement on my husbands agenda or that he could simply drop me off with one phone call :-0 and one of the above is just what happened.  I went into a clinical trial for that reason and others. My insurance was dropped @ aprox 12 weeks into tx.  Whew. I was so afraid that I would begin tx and wind up with my rear hanging in the rear.  That was probably one of my best moves in life and in war.
     Now for you, You can make this!  Do you have the ability (cause you are on tx) to go thru all the steps and keep fighting to resolve this before you get your rear in the air?  Do you have someone to assist you?  You will probably have to contact many manufacturers? and patient assistant places and I have seen one person have to have his doctor resubmit the paperwork.  You must remember Doc's make mistakes with paperwork and it can be  crossing all the T's and dotting the I's. Wishing you luck ;-)

[frijole]

It looks like we crossed posts.  slideman, I do understand but I am confused.  You are saying you can't make it on half salary for 4 weeks?

turnbo just gave me a telephone number for a tax exempt organization that is going to pay him up to $7000 on copays, including doctor's visits and pay him back for up to 90 days.  Here is his message to me.  He had to provide a tax return or W2 from a prior year.  You might pm him -- this kind of back payment might help you through the final weeks to be able to complete your treatment.

"..." i was approved by a non profit organization to pay the remainder of co pays up to $ 7000 plus they are going to pay me back all out of pocket money spent on meds and doctor visits in dallas dating 90 days back. I would recommend this # if ur interested. 1800-240-1224..

[frijole]

no no no no.  you don't need to do that.   You just need to go to the drug companies and ask them to cover you through this.  How many weeks meds do you have left?

I mean, you are a relapser and you have been UND since week 4 and eligible for 24 week treatment.  you just can't stop now!

Pegasys
http://www.pegasys.com/patient/for-patients/access-solutions/index.html

PegIntron
https://www.rxhope.com/PAP/info/PAPList.aspx?drugid=3840&fieldType=drugid

Interferon and Ribavirin
http://www.hepfi.org/nnac/pdf/medication_assistance.pdf

[slideman]

Yes I was very honest and upfront about tx. He worked with me while I was on Inc. And I returned to 8 hrs a day right away even though my Dr recommended that I stay to 8 hrs a day. Construction work is not like some jobs where people are good to their employees. Its Dog eat the Dog and the older you get the more they are willing to get rid of you. Thats why I was so happy to get a desk job. Oh well I will get back on my feet because I dont know any other way. Its all good!!

[slideman]

Its not a matter of having insurance, I'm good there, its more of the financial nightmare of being on unemployment. My income will be more than cut in half, and I cant make it on that. I have become anemic enough (10.2) that I am not able to do the physically demanding work that I will have to do. I have already had offers from other company's in my area to return to work, but I just did shot 20 last Friday so I think I can hang on to wk 24 but after that financial ruin. The cost of tx has already cost me all the money I had saved, and now my job is gone. When is enough, enough? And who knows 24wks might work. Its certainly better odds than I had 20 wks ago. I really have no choice. I am 51 yrs old, too late to start over and too hard headed to not work.

[hrsepwrguy]

http://www.medhelp.org/posts/Hepatitis-C/Vertex-Assistance-Numbers/show/1616993?controller=posts&action=show&id=#

Has vertex assistance numbers as well as SOC numbers

Sorry to hear this but trying to get you all info needed

[blondie717]

     congratulations on UND.  Its critical that you tx as long as your doctor said you need. There are a few ways you can remain on tx.  One is Cobra insurance , which is very costly, but hey you said you can strech to 24 weeks. So now you have to attempt to go your full 48 wks of tx.  One way is to contact the drug companies and see if you qualify for patient assistance.  Some times you qualify for free meds.  Lets see you need to get intouche with makers of riba, interferion and your 3rd drug. Start this process now. There are many people on this forum whom can guide you in the right path. Good luck