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Afraid of treatment
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Afraid of treatment

I know this sounds funny, but I'm afraid of the treatment. You see I'm just about to start treatment through a study (vertex).
It's not that I am not grateful, just right now I'm seemingly really healthy. From what I've read and seen, this stuff (Interferon) is bad a##. This study you get the regular treatment and their new drug (VX-950), well 1/2 the people get it.
I guess my question is do some people not react so bad from treatment? I need a few good stories, I'm a very postive person and I know I'll make it though, and I do believe I will be cured, I would just like not to be so afraid.
                            Thanks, Smitty27
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27 Comments Post a Comment
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96938_tn?1189803458
Fear is ok. But, you are fortunate to be involved in VX although the jury is still out.  As you read, pln is also in vx, as is Prettydamscared (started vx 8/7) and mremeet (starts 8/18). So you have a few VX pioneers just in front of you who have kindly and generously keep us informed about what they are going thru.  You should stick around to hear about their progress and just about everyone else here has expereince with interferon and riba.  You're certainly not alone.
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Avatar_n_tn
Thanks Smitty,
I guess it just helps to talk about it, and listen too.
I'm not going to let being afraid stop me, but I would like the fear to go away. Smitty27
p.s. I like your screen name!
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Avatar_m_tn
The fear BEFORE you start (for me) far exceeded the fear level after you atually start the treatment. Even though some do have to deal with side effects,there are quite a few who do not. I think you are dealing with "fear of the unknown" and you will feel better once you get on the pony and ride. Hang in there,this whole thing and dealing with is is a real challenge to your nerves!
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Avatar_m_tn
The fear BEFORE you start (for me) far exceeded the fear level after you atually start the treatment. Even though some do have to deal with side effects,there are quite a few who do not. I think you are dealing with "fear of the unknown" and you will feel better once you get on the pony and ride. Hang in there,this whole thing and dealing with is is a real challenge to your nerves!
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96938_tn?1189803458
I think that you keyboard infection has spread from your 'L' to the 'N' and now to 'Enter'. A least it hasn't yet gotten to 'V', 'S' and 'R', you need those keys later.
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151263_tn?1243377877
Hey smitty, welcome aboard. I'm also in the VX study, I start on Friday. Like you, I'm getting nervous, so I understand what you're saying. But really there are a lot of folks who tolerate treatment very well, and they usually don't come online and tell everyone "I'm feeling well!", they simply go about their daily day without saying anything online. Try to keep that in mind when you read so many negative accounts. And I don't know if the 27 in your name is suggestive of your age, but younger people in good health usually tolerate treatment much better than older folks in worse health.

Anyway, welcome aboard and keep us abreast of what you're going through. You'll probably start to see my whining on here starting in less than a week! ;-)
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149918_tn?1208132344
Hi, I am in the vx-950 study, in my 3rd week now, The treatment is hard but as I have read and as I am finding out first hand it is doable. I do my shot on monday then tuesday all I can do is lay around,today not 100% but much better. good luck PLN
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116701_tn?1210262764
Hey Smitty, we are all afraid. If you are feeling really good I can see how that would increase the anxiety. The VR-950 trial is for a shorter period than 48 weeks isn't it? Just curious. Dale
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Avatar_f_tn
what are the chances ot TWO smittys on the same day in the forum?
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Avatar_f_tn
Thanks Kalio.

I gave the wrong link, here it is www.jsjinc.net
Sorry about that.

Regarding acupuncture it is state licensed so they have to have very strict procedures regarding their needles, both for their own protection and that of their clients. Most of the acupuncturists who have worked on me use disposable needles. My insurance will only pay if the acupuncturist is an M.D. so I'm getting a new one here but it takes a long time to get in for that first appointment, Sept. After that it's not so hard for an appt.
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149675_tn?1257636570
You are right about this reflexolgy stuff. I was driving down the road this morning and a guy pulled in front of me and I got real angry so I held up my middle finger like you suggested and I felt soooo much better. LOL I am just kidding around grandma, I could not resist that one. I do not have anything against any it but I saw an opening and had to take it. Couldn't help myself.
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Avatar_f_tn
Mary Burmeister who brought this wonderful Art to this country from Japan said, "THAT finger is the only one the American's got right". Yes, it's for anger! If you feel yourself starting to get angry when you are talking on the phone you can hold it. Incidently, it's also the finger for the liver.
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Avatar_f_tn
LOL! maybe that is why I did not need ADs while on tx!
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Avatar_n_tn
Fear will serve you well - you found this forum BEFORE you started tx!  I started tx and was about 7 or 8 weeks in before I even knew I was in trouble!  Stick around - these folks are kind, giving and informative.  With this kind of support, I've no doubt you'll be able to do it.

GrandmaA - way too cool!  Thanks a million - I'm printing this thread.

Dragonslayer - driving - wonderful humor you have - thanks for the laugh!
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Avatar_f_tn
If treatment were nearly as bad as it's made out to be I sure wouldn't have been here for the 48 weeks I have.  Plus 24 more weeks to go!

Interferon caused me less problems than the ribavirin I think. It's not fun but treatment IS usually doable.

Can I ask why you are taking a chance on getting vertex MAYBE instead of just doing the regular treatment and having great odds that you can cure it?  since you have to take the IFN/Riba combo anyway - why are you participating in a trial for a drug that hasn't been even proven to work yet?

I'm just always very curious.
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Avatar_m_tn
What I would give to find a good reflexologist in my area! I dream of it. It has been so helpful to me in the past, I could sure use one now but sine I relocated I can't find one.

I have a question... how do acupuncturists deal with sterilization procedures? Are there any regulations they follow? Is there any overseeing authority that confirms proper sterilization is in place or are they similar to manicure salons in that they are supposed to follow a certain procedure but there is no overseeing system in place?
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Avatar_f_tn
If you are in California there's the Reflexology Association of California, they have a practitioner list. Other states have their own organizations, do a google search. There are two different schools in the USA. I recommend the practitioners who were trained at the American Academy of Reflexology (although I was trained at both schools). The hands are best for problems in the head and neck, the ears for muscular skeletal problems and the feet for problems in the trunk of the body. But they reinforce each other so we do all 3 in the hour session. To have the ears worked on is also very relaxing and 9 out of 10 gents go to sleep when I work on the ears. I have worked on my own ears in the dentist chair it's much better than reading a magazine. The other method (Ingham) is O.K., but they use more pressure and they don't do the ears. It is not necessary to use more pressure if you do it right. It can also be counterproductive for the client.

The website for Jin Shin Jyutsu is www.jinshinjinc.com They also have a practitioner locator online.



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Avatar_m_tn
Thanks so much for the info, I will see if I can find a practitioner..I couldn't get the link you posted to work though, it didn't lead to a site it says the link isn't valid. Maybe I can find it through google. I will try. Thanks again for the info.

PS good luck getting into the VX trial, I am pulling for you!
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Avatar_m_tn
First off, welcome to the forum.  I think you'll find alot of support and information here which may help belie some of your of your fears.  Some fear and scepticism always seems to be good and healthy.

One thing to consider is that this tx affects everyone differently.  Unfortunately, you do not know how it will impact you or what sx's you'll experience until you are into it.

If it helps, except for the anemia and leukopenia sx's of the meds, (mostly the anemia from the ribavirin) I have not experienced most of the sx's associated with the tx.  Sure there have been bouts of depression and rage, all overcome so far, knock on wood, without supplemental meds (i.e. AD's, etc.).  But as I told my docs, with me fighting the HCV dragon, a wife, son, and daughter battling depression and anxiety issues, I would have to be abnormal to not experience some bouts with depression.

One word of caution I would express, knowing someone currently 12 wks into VX950 trial 2 and needing to drop out, if your CBC's start to tank (i.e. anemia from low Hgb, leukopenia from low ANC, platelets, etc.), you may want to see whether supplemental meds (i.e. Procrit, Neupogen) are allowed, if meds are reduced, or whether you need to drop out of the program (in which case you may want a backup plan to continue tx).
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Avatar_f_tn
I LOVE my antidepressants.  Wish I went on them a long time ago!

Smitty - we laugh in the face of thiis stinking disease! HA!

That's what you tell it!  :)  Treatment is doable...I am sure you will be fine.

Remember we have ALL been just as scared as you. And most of us are big whiny baby girlie pants - yet here we are.  Killing the disease...that is WAY more important than a little fever once in a while (boy how easy I can make it sound LOL).

Have faith. You'll be fine if you keep your spirits UP.
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131817_tn?1209532911
says; what are the chances ot TWO smittys on the same day in the forum?

Do you think he answered himself? That is very stange that the forum would allow two of the same screennames.
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Avatar_n_tn
I treated for 24 weeks (type 2) and didn't think it was terrible at all.  Frankly, my anxiety pre-treatment was far worse than the actual experience itself.  I think that being young & having no obvious liver damage probably helped, as did being fairly lucky (no anemia, thyroid issues, etc).  My doctor, prior to treatment, told me that he could tell I'd have a relatively easy time & I did:)  It's hard to read the things that can happen & not assume that they'll happen to you, but I can tell you from experience that sometimes it's just not that awful!
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149675_tn?1257636570
Maybe it's his alter ego
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131817_tn?1209532911
Hey, maybe it's the Riba? Or maybe Brian Fog is posting too!
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Avatar_n_tn
Thank you all for your support!!! Let me see if I can answer all your great questions....... The trial was going to be for 48 weeks.....I let my spot go, because I'm in Houston and the trial is in Dallas. It was going to be to big a draw on my resources, with gas prices and everything, on top of the fact that even though the treatment would be payed for....I needed to pay for the first visit to determine where are not I could precipitate. It's not alot of money for the visit, but I just couldn't swing it right now. The spot I let go of was the last one for that study. So, I'm relieved and disappointed at the same time. I'm thinking it is my impatience is what made me jump at the chance to start the study so far away. I found a study in Austin which is closer, also there are new studys in Dallas that start next month, and they pay a little for your time, so that will help me with gas.
Why would I choose to go the path of trials? My impatiences, I am in the county system for treatment, the soonest that my treatment would start is next year, the SOONEST. Like ya'll said before, it's the fear of the unknown that is the worst. So, I would like to get started as soon as possible. If it helps get a drug on the market that works better than the regular treatment, then all the better.
I have hep c type 1, so a 50/50 chance regular treatment will work on me anyway.
I pick smitty27 as a screen name because smitty was already taken (as ya'll have already noticed), but the 27 is not my age. I'm a 46 year old woman and my dad's nickname was Smitty that's why I pick it. Oh yea, thanks for the tip about the finger deally, I'm going to try it! Thank you all for your kind words, and putting up with me being so long winded. smitty27
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Avatar_f_tn
I'm trying to get in the next phase III of the Vertex trials. You are so fortunate everyone who has been picked. Without you we wouldn't have this tremendous new treatment for genotype 1.

I'm a acupressure practitioner (Jin Shin Jyutsu). I would like to share a few things with you. This sounds too simplistic but it really works. Now, regarding fear. Fear is False Evidence Appearing Real.

When you have fear hold the index finger of your right hand gently with the left hand and it will evaporate. Works great in the dentist chair or anywhere. If you have anger hold the middle finger. If you have sadness or grief hold the ring finger. If you try to hard or pretend things hold the pinkie. If you have worry hold the thumb. If the attitude (fear, anger, sadness or try tos, this spells FAST. To get rid of worry hold the thumb.
This is all on the right hand. The right hand is the present.

The left hand is the past. If you have any of those attitudes from the past hold the fingers of the left hand gently with the right.

I have been doing reflexology of the feet, hands and ears for 11 years part time. I have been studying Jin Shin Jyutsu the last 3 years.

There was an instructor in this Art who had cancer and she had a lot of Jin Shin Jyutsu treatments and also worked on herself and she sailed through the chemo. Her oncologist was amazed and he wanted her to work on all his patients. I will find out all those holds (what points to hold for that).

If anyone wants to know more they can get the book The Touch of Healing by Alice Burmeister. They have it at Amazon. There is also a website

The main thing is the energy moves up the back and down the front and anywhere it is blocked it stops and goes back the other way. There are 26 safety energy locks on each side of the body. In Jin Shin Jyutsu we assist in opening these safety energy locks that are points on the body.

If you hold the inside of both knees it will help you get the energy moving. The safety energy lock on the inside of the knee is the prime mover of the body. Please try it! You don't have to spend money to get help, you just have to learn how to help yourself. This is an ancient art from Japan.
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Avatar_m_tn
I recently quit smoking...any good reflexology tips for people quitting smoking? SO far Dragon's middle finger thrust helps but not much...

I tried pinching my ears, I think if I coud pinch someone else's ears ( or head off) it would work better!
I tried looking it up to no avail. Any tips for this situation would be greatly appreciated.
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