Todays the day

[Becky D]

Just wanted to say thanks to all of the hep supporters out there. Todays the day. Will see Dr. at 2:35. Not much longer. Thanks for the answers to all my crazy questions but most of all thanks to all of you for being here. Its great to have such insight in the pt/tx aspect. I has made getting to today much easier and I know it will make this dreaded visut by far a more pleasant one. Please keep me in your prayers as I will keep each of you in mine... WIll be back in touch with all the details sometime this evening.  

Becky

[dlr2007]

You must be a very strong person- I'm sorry you're going thru all this. That NP sounds awful- hopefully you won't need to deal with her all thru tx. I would ask fo9r someone else if possible. I'm not as knowledgable as others, just wanted to wish you the very best.
Hugs and prayers,
Dee

[Tallahassee]

I just wanted to offer my support to you. You are on the right track – to treat this monster.

Please continue to stay positive!

All the best!!

Talla

[wyntre9]

Sorry, Becky.

I went dyslexic and read 1B as 2B.

I meant G 2's are (supposedly) easier to treat.

Didn't mean to confuse the issue.

Good luck today,

wyntre

[meki]

"Wow, reckon shes ever exp. either???"

LMAO --- ain't that about the truth -- not a dang person can understand unless they have done it.

I have serious sympathy for Cancer Chemo with radiation therapy... I have no idea how they hold on to their sanity.

Hugs --- and hope that everything is going to be ok.

Meki

[ladybug52]

It's hard to read about someone so positive who's had the wind taken out of their sails! I didn't know a lot about you till I read this post, and my heart goes out to you. It's hard to understand what the NP meant, because you're only able to give your subjective version. Also, whatever I tell you , you have to remember that it's just numbers and odds, and you've already been there once and beat them. Hep c, geno 1b is supposed to be a little less responsive to tx that geno 1a. This virus has had many mutations, and though you're genotype 1, your subtype is b. I'm a  geno 2, but was never told my subtype. I did read recently, that geno 2 is usually associated with older age.....I fit the mold there:) I don't beleive that's true, many people here have geno 1 and they are retired,or geno 2 and they're still "young."
As far as biopsy vs bloodwork, the biopsy is still the gold standard when it comes to evaluating liver damage. It's one way to tell if you have to tx or can wait.
Good luck, Becky D, stay calm and pull on all the resources that got you through CA tx.
Hugs,
Bug

[copyman]

this may have been answered already but just in case i will try and answer. the "b" in geno 1b is the sub genotype and as you prob know 1's are the hardest to treat and most popular in USA, around 50% chance of beating it. my take on the 76% is from the blood test that was taken before in lieu of a biopsy, they call it a fibrosure test. if this was in the 76 range then it would mean you are around stage 3 in respect to damage to your liver. it is very hard to remember what the doc says during a visit so you have to get copies of all your tests and then you can get better answers here. at this point we are all guessing trying to help you. hang in there and this will work out, we are / have been there and can help. and last but not least i would look for another doc, sounds like a nightmare and no one deserves to be treated this way!!! get to a good hepatologist that treats many HCV patients. wishing you well.

[ladywhy]

I had a similiar situation with my previous txing dr. He is a gastroenterologist..and I found out after 6 wks. of txing...that he had very little interest in Hep C or me. He was 10 minutes away from me in a really plush office setting. I found a hepatologist in a nearby city. It takes a whole day of public transit for me to get to a very bad area of Philadelphia. It's worth it, to know I'm in competent and caring hands. I hope you find the same. It's difficult enough dealing with the disease, you are absolutely correct, when saying that you don't need such negativity.

Yvonne

[ladywhy]

I had a similiar situation with my previous txing dr. He is a gastroenterologist..and I found out after 6 wks. of txing...that he had very little interest in Hep C or me. He was 10 minutes away from me in a really plush office setting. I found a hepatologist in a nearby city. It takes a whole day of public transit for me to get to a very bad area of Philadelphia. It's worth it, to know I'm in competent and caring hands. I hope you find the same. It's difficult enough dealing with the disease, you are absolutely correct, when saying that you don't need such negativity.

Yvonne

[Becky D]

Dr. Monsour is a GI and live doc. I also have an oncologist and internal doc overseeing my case. Liver doc has a NP working with him. He see you every other visit unless emergency. I have only seen the NP twice counting today. Not really impressed. Still time to scope out other options. Probably would be best to do this now than after your locked into tx. Can you change docs after beginning???? Its so hard to get appts these days and not much to choose from in my area. Really cant afford to have a doc 1+ h away. Thanks for your help

[Becky D]

She said 50%. I know that. Maybe she said a and I didn't retain that since I got aggrivated when I asked to to explain what that meant? Can't say for sure. I am sure about the 50% though. Since chemo I find details like those and #'s hard to retain. Am gonna get copies of everything. If I'm allowed to sit down and read it at my own pace I can retain and understand much better. Have copies of everything since all this began. Will get these next visit. I will share with with ya'll maybe then we can all better understand.

[debnevada]

Going through your questions:
the "b" in 1b is a letter given to a certain mutation of the "1" part.
Have her explain what "76 percent" means. That description is incomphrensible tome.


She does sound relatively negative. I am also not clear as to wether this is your liver doctor or the doctor who took care of you for the carcinoma.  I have found hepatologists to be more positive than what you describe and i've seen three and talked to a couple of others.

Give us the results of the labs.

I'm stabbing at a few of these things. Hopefully one of the "sages" will come in and have a look too because I don't want to misspeak.

Deb

[PSP-n-Me]

"From what i recall, 1B's generally have a better chance of SVR than 1A's - i think  it's 75% success rate - that's the GOOD news"

as a 1A currently on treatment I sure didn't need to hear that!  do you have any scientific date to back up that sentence?

*dip*

[debnevada]

go get an eye exam in the next day or so.

more to come

[Becky D]

Wow !!!!! I'm sitting here reading what seems to be the "Last chance to back out packet" What's up with that ?????? OVERWHELMED !!!!!!!!!!!!!!! Totally... FYI, she did ask if my eyes were bad and/or damaged bu chemo. Answer, yes. She says tx can make it worse. THought someone asked about that the other day. She made tx. sound like a walk in the park. Just as she did my Ca. tx. Wow, reckon shes ever exp. either??? Sorry, needed to vent. Lucky for ya'll I stopped mysefl. Really confused, agitated, frustrated, oh and pissed off. I believe in a past thread my words were, "What don't kill ya makes you stronger". Damn we sure must all be strong.  Thanks

[wyntre9]

Your situation is soooo complicated!

i don't quite understand why they don't want you to have a biopsy.  Or did i miss that part?

From what i recall, 1B's generally have a better chance of SVR than 1A's - i think  it's 75% success rate - that's the GOOD news.

People who work often take the shot Thursday or Friday night; the CW is that allows you to rest during the worst of the SX.  but that didn't work for me as my SX are so unpredictable.  If you're not working it doesn't much matter when you do the peg.

About the pain releif - maybe you won't have any.  And, if you do have aches then i beleive tylenol is OK in moderation.

good luck,

wyntre

[Becky D]

They will be calling me when labs and rx is in. Said they will schedule all appts for the tx period at that time. Hopefully, I think ??????, I will see them the end of the wk or beginning of next wk. No, I am not working at present but sure wish I was. If you need more details just let me know. Will do my best to get them for you. Hate being uninformed and left in the dark. I will be grateful for any help you guys can offer.... Thanks

[debnevada]

Becky. Wow. Of course you came out of there confused.

I guess with all of the stuff you've been through, you aren't working?
That's the only reason that most folks treat on Friday but if you don't have those work obligations.

I want to go through your post and make up a list of questions but need a little time to do so, when is your next appointment?

Others will ring in as well too

[Becky D]

Went to Dr this afternoon. Went in somewhat scared but confident. Came out confused. More labs need to be run before I get the greenlight. Tumor markers need to be run again but I have faith that the Ca is still in remission. I lost patr of my pancreas and my spleen to the Ca so they want to see plt.count again as well. I  understand that that can also be effected by the live and tx. Anyway, the genotype is 1b. Understand the 1 part but not the b part. Didn't see Dr. MOnsour today. Saw his NP. Asked her what the b stood for and she said she doesn't know. WOW!!!! True I'm a PA but not practicing and when I did I was in Family care and ER. Didn't have much interest in the details of Hep. They were always referred out. Now, its different and I do want to know details but chemo screwed my head up so bad not very good with details. Why didn't she have the answer???????? It obviously matters somewhat or it wouldn't be there. Don't think its for looks !!??!! LOL. Also asked about liver damage since I was diagnosed 1 yr ago and went thru Chemo not to mention a host of multiple meds. She said that since I wasn't eligable for studies due to the Ca. that they could opt to do liver bx or a blood test that pretty much shows the same. She later found that the test was run in Dec. and showed 76%. Of what I don't really know. I believe fibrosis. When asked is this was good or bad she only said ,well if it showed 92% that would be severe so I was mod. Moderate what?????????????????? When asked if this would improve with tx she said no and that I only had a 50% or less SVR. Talk about seeing the glass half empty. She really needs to work on that. I've dealt with so many what I call, "Dr. Gloom and Dooms"  through my Ca that I just think if someone is willing to give it everything in spite of the statistics then the healthcare provider needs to get on board or get off my case. I'm fighting for my life and I don't need some half-herated dim-wit fighting AGAINST me. Certainly would think that if all you deal with is liver dz and Hep then you should be as knowledgable and informed as possible. You know, up on the latest. I asked her if this would improve with tx and she matter of factly said no. Is that true????? Why fight something if there is no hope for improvement?????? I'm not giving up. Just questioning compatency on her part. Becuz they saw me thru the Ca. they automatically asuumed I have a drug prob since I had been placed on so many narcotics. I informed her that I was not taking anything at all. She said they will not help with anxiety or pain. Which is fine since I really don't want to take anything and haven't for almost 1 yr. She recommended Tylenol and advil. I questioned her about the tylenol and reminded her of how toxic tha was on the liver. She said don't take much or very often. Viral load was high can't remember exactly but it was high. Test pending, UA, TSH, tumor markers, LFT, CBC, plt ct., Chem panal. HAve chosen not to do live bx at this time since they think the blood test is adequate. Honestly don't know. They have ordered meds and hope that they will be in along with labs later this wk so tx can begin Monday. Is that a good day???? Why does it matter???? They wanted to start me on anti-dep. today but I refused as I don't like the way they make me feel. I did however agree to keep that option open if needed in the future. Thank you for answering and for your support. Hope you guys can clear some of the confusion up about genotype 1b and the 76% thing. And where I stand in all of this. Are my efforts futile in taking tx???????????  Becky

[cajunlady]

Good Luck with starting tx.  You are on your way to defeat the dragon.  Hope all goes well at the dr. appt.  Keep us updated and stick around this forum; it will sure help you make tx doable.  Lots of support and knowledge here.

Cajun

[debnevada]

i didn't mean wait becky don't do it i meant ...."so you are starting today?" It wasn't clear from your post.

[debnevada]

you start treatment today? On a Tuesday?