Anybody out there have to stop treatment?

[jslepin]

I did 14 weeks of treatment and due to an insufficient response, it was suggested that I stop treatment.  Either that, or move forward for 12 to 18 months with a pretty low statistical probability for eradication.  This has been difficult for me.  Post treatment, I almost feel worse (emotionally) than I did when I was on treatment.  I had so hoped to get rid of this nasty virus.

I started a blog when I first started treatment.  If anyone is interested, have a look.

http://hepatitiscawareness.blogspot.com/

Jennifer

[jslepin]

Odin999- I think that my hair has finally stopped falling out (about 2.5 months after I stopped treatment) and I am seeing new little sprigs come in.  That's encouraging.  The texture of the hair that is remaining is quite dry and icky.  I don't think I mentioned in my previous post that I also am developing what looks like acne.  I am 50 years old, and have had the blessing of beautiful skin most of my life.  So it's really awful to feel like my hair and skin now look awful.  It's quite a challenge to the psyche.  

You said that treatment impacted your self image.  I too feel worse after treatment (psychologically) than before and even during.  I'm trying to keep my chin up- but it's all a very isolating type of thing- and no one but someone else who has been through it seems to understand.  

Your mention that treatment is "terribly crude" is so true.  I feel that it's irresponsible the way my doctor administered my treatment.  I was pretty much on my own- and the few times I called them for support, they were not able to provide any.  If not for the 1-800 number at Schering Plough, I am not sure I would have gotten even as far into the treatment as I did.  Coping is a HUGE piece of this- pre- during- and post treatment.  

I have a blog- and I don't write much on it these days, but if you care to have a look, here is the link
http://hepatitiscawareness.blogspot.com/

I wish you continued progress toward wellness.  Please keep in touch.

Jennifer

[theflyjd]

Hi Odin999. I was on Interferon and Infergen for 3 years. For me, it was a matter of getting in shape before I started treatment. It still kicked my butt but it was tolerable. There are new treatments being advanced daily. Hopefully you will find one that works. My very best wishes to you and yours.

[theflyjd]

I did Interferon twice with bad results. My Drs put me on daily shots of Infergen last July and I cleared in February. As of last month, I am still clear. I have labs scheduled for the next year but I'm feeling a lot better about my condition now. Good luck on your next adventure!

[Odin999]

Hi Jennifer.

I started treatment almost at the same times and finished for the same reasons as you. My hair also continues to fall out. It isn't terribly obvious, but I do  wonder how far the thinning will go before it stops. I worry that work clients will think that I am no longer up to the job because I look sick. My work competance is still affected post treatment as well.

Treatment impacted my self image too. I feel much physically and mentally much worse now than I did before I started. During treatment I began to look at myself as a chronically ill person with a poor prognosis, instead of someone who was quite strong and healthy despite having a chronic illness. I don't think that shift in perspective has been helpful at all.

I had looked after myself well and was very physically active before treatment. Now I feel like I have lost so much energy, competance, even the will to keep on trying. I don't mean that I am suicidal or anything like that, but I don't see much point to working for the future anymore. I find myself thinking about withdrawing on many levels. I hope that will change. I am doing what I can to recover. I have rejoined my cycling club which is lifting my spirits a little. Such feelings can easily be overcome by informed advice, yet post treatment many patients are thrown into a void.

It seems to me that the Hep C treatment package is so terribly crude and underdeveloped. Patient management seems better in some countries than others, but even in areas where a better SOC is available I can't recall seeing much expression of gratitude for great service from patients. I was quite impressed with what Lance Armstrong wrote about his nurse making chemotherapy for testicular cancer as bearable as it possibly could be. He was very grateful to her. I can understand the problems faced by the medical profession with INF/RIBA treatment, but I can't help thinking that some relatively simple and inexpensive protocols related to pre-treatment decision making, management during treatment and finally for the recuperation period would go an awfully long way toward helping us cope.

[Trinity4]

Jennifer,
What a wonderfully inspiring blog.  You have accurately depicted the patients perspective and the medical community as well.  And yes, I've aways known they prefer us to buck up rather than whine.They just give me a blank stare - so I don't even bother anymore.  
I hope the new drugs will be an option for you -  if I'm not UND by 24 wks (20 wks currently - did not clear by 12 so 72 is an options if UND by 24) I will also wait for the new drugs which offer much higher cure rates and less treatment time.  Good Luck Jennifer and thank you for sharing that with us.  (Are you familiar with Hickory?  Spent 30 years there!
Trinity