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Jim Bx

Hi Jim,
I remember you telling people when they get their bx slides to make sure they get.....? Also do I call the hospital or ask the doctor to get them for me or what?

And, the piece of liver that they took out, thats whats on these slides and its preserved somehow?
Or are the slides just pictures - I really have no idea.
Thanks.

Ps. my second day of Alinia - no sx so far.
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131817 tn?1209529311
HR says we can get it over the border, but it is expensive. I sure will try when/if I re tx.  Some seem to have there Hep dr's writing scripts for it. It can be ordered off label. As well as it did in the Egyptian studies, I want it. As relapsers we really need to be very agressive with our tx.   Try to keep that script girl!
Love ya,
Linda
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179856 tn?1333547362
From all indications that I've ever read anywhere alinia is prescribed 2x a day @ 500 for 3 days for adults.  If you have been written for a week you should be definitely done with the worms by then and it would NOT be a problem as you already have done more than double the regular dosage.
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Avatar universal
Yeppp, its the ole 'Single cell protazoa' - I said 'one cell', but he corrected me when I just said that on the phone - well I was close - but no cigar. But - sure taint fun thinking about that on top of the hcv- especially Mrs howard hughes that I am:)

And thats great news that HR said it should ONLY be used WITH SOC. I'm really battin' a thousand. j/k ,,,,....., my concern (I mentioned on forum the other day) was if anyone thought it would be a problem if I was only on this stuff for a week.

The Para doc will not write a prescription except for this problem and says as far as the virus its up to the hep doc - which I can understand,,,but I am in a real bad place cause my last pill is soon - one night this week, then the Para appointment next day and I would love to find out what my VL is BEFORE I stop - IF I have to stop. I have to somehow try to convince my hep doc to let me stay on it...I really don't know at this point what to do and I'll try to track down my doctor and ask in order to maybe get a script since I already started. OR maybe stopping the stuff is the way to go. Well to tell you the truth, I don't feel so bad NOT knowing what to do cause, believe me, I don't think this is going to be an easy decision even for my doc - not enough info on Alin.. I just don't like the idea of my virus maybe being under control or lowering from the med and then to abruptly stop. So I'll see. Fun - fun - fun.

Well gotta run to the store - see ya later.
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131817 tn?1209529311
Yep, I remember you were sure about those parasites on the phone. HR says we should only take Alina with tx.  It's a shame we can't get it from our Hep dr's. Can you tx with that other doc?  I sure would stick with the Alina on SOC. As relapsers we have to fight harder to get to SVR. Our chances are slimmer.  When are you going to start again?  My doc is worried about me on interferon, so I have no idea if or when I will re tx. Going to see HR for another fibroscan and see how the fibrosis has progressed. Yep, my GI was worried about H pilori for awhile, but then said I didn't have it. I sure would pursue that Alina thoughout tx if I were you. You are lucky to have gotten it!  It's a shame we all can't get it, it is a pretty harmless drug I hear. But really helps with SVR.
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Avatar universal
Thanks Elaine, I appreciate that. I feel alot better after seeing this doc and plus my husband is so good. He proves his love more and more each day. I always knew he loved me, but I don't know if I ever realized how much - sounds crazy, but its true.

Just before on the phone I asked him if its hard to love a hep c -parasitic woman (HPCW).... he laughed and said no. lol So I guess he'll keep me for a while yet, I hope:)
But if he doesn't, do you think I should include having hepc and parasites in my eharmonydotcom profile? Ya know, just to get it out of the way, so I don't have to have it on my mind during my first date with the new guy. lol

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Avatar universal
Thanks Jim..
I'm not 100% sure I am even going to get/want the slides. But I was thinking about having the para doc look at it..Just a thought. But thanks Jimmmmie.
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Elaine, thank you so much for wishing me well. I did have the bx already though - just thinking about taking the slides to another doc.
If you talk to Ladybug, (cause I meant to send her a private message - but didn't do it yet, but will hopefully later on..(but incase I don't get to it), please tell her I read what she wrote in the thread the other day when I was upset and her words really brought comfort, as others did too, but the thing that she said about hormones/females and how doctors don't always listen because of that, she really comforted me, but was sad to see what happened in her mothers case - very sad.  
So please thank her for me for her kind words and hopefully before the day is through I will touch base too.
(I probably won't be getting Alinia for tx -just for this week, unless I need another round - I will try to convince my hep doc to add it especially now that I started - that might be the deciding factor in where I tx.- which doc will allow me to use it- if any:) I sort of look at this situation with getting the Alinia as a sign I am supposed to be on it for tx, but a doctor must have "eyes to see" things such as this. I wish Dr.Ben Carson was a hepatologist:)
Hugs,
MO

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Avatar universal
Myown,  Are you starting tx again?  you didn't tell me girl!  I just want to know how you got your hands on Alina and the whole kit and kaboodle about your re tx. How long, etc.  
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Helllooooo there!

Okeee, its very easy to get Alinia when you find out you DO have parasites - remember I told you about my fears,well, went to a top notch Para doc - who btw is very familiar with hepc cause he was Research Fellow for S. Sherlock,,,but anyhow he did the test and winds up I was right!

I spoke to him again cause I forgot to ask what kind and winds up its from contaminated food or water -called one cell protazoa, which is what he sees alot when there is an outbreak at a restaurant:)

So anyhow after this is straightend out, I guess I will start. Got the meds on hold and I might call them again to hold off cause I really want to talk with the hep c doctor.

My hep doc doesn't even know yet about my 'confirmed para' and so he doesn't even know I am on Alinia - he might not want me to continue after para tx - but to me, I looked at it as more than coincidence that I wound up finding this biggy doc and that he uses Alinia.

The pen that the receptionist gave me to fill out the paper work at his office was a "Alinia" pen. I turned to my husband and said - OMG, look at this! - here I wanted Alinia - (hep doc said no cause only used in studies )- I said this might be my chance to get it.

You're IBS- might be worth if you investigate into that too:) I am going to ask the doctor for some other doctors names for those who live outside of my area. I will ask about California too for those who may want to have the test done -"correctly." But I would think any specialist in that field should be fine.

Btw I read that out in California there has been another outbreak of that flesh eating virus. I'm telling ya - this is getting crazy. Put me in a bubble, pleazzzzzzzzze.

Hugs,
MO
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Avatar universal
You're right and I'm aware of that, that my current doctor wants to review the slide for himself.  He said they have better diagnostic tools at Toronto Western and can make a more accurate assessment.  They also tend to want everything done within their own hospital.  They re-did all the blood tests as well.  I get THEIR results this Thursday. Finally.
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Avatar universal
That second paragraph is correct but without context so please delete.
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Avatar universal
No doubt the reason your doc wants the slides is because he (or his pathologist) want to take their own look. Studies suggest that pathologist bias (different scorings by different pathologists) can be off a stage or even 2.


To break the tie, I had my tx doctor's pathologist review the slides and they came out with stage 2.5 That's hospital 4.

On a personal note, I had the same slide set read by four different pathologists and the staging varied between stage 2 and stage 3.

As to the safety of the slides, you are supposed to return then to the original pathology department when finished -- and I'm so glad I just reminded myself of that fact because for some reason I have them safe (and very accessible) at home :)

-- Jim

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Avatar universal
Jim, what reason would one have for wanting the slides if you have a copy of your biopsy results?  The doctor I've switched to has requested the slides from the doctor/hospital that did my biopsy so that they can take a look at them for themselves.  I suppose if I had them, I could just hand them over ... but ... would I store them properly?  And if any doctor can request them from wherever they happen to be...what do I want them for? I can't do a diagnostic on my own liver sample, I don't think. I'm sure you'll have a great answer for me but that's my questions on it.  Any risks in keeping your own slides in this regard as far as storage requirements?


Not sure I'd want disorganized me to be taking care of my biopsy slides but that's another matter entirely.  
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315996 tn?1429054229

First, the pathologist checks for your signature on the form that says you won't hold him responsible, then the pathologist cracks open another Pabst Blue Ribbon. Then he turns around so his back is facing the dartboard and throws a dart over his shoulder for each area of diagnosis he needs to make. . . . . ..

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Avatar universal
Yes, you want the original slide set. This is not one slide, but a set of about 4-6, including the special stain slides, or something of that nature. Just don't let them hand you one like they did with me the first time.

How do you get them?

Unless you are thrilled with the way your doctor's office expedites things -- ho hah -- then maybe you should take the lead. That's how I did it.

First, you know where the biopsy was done. You have the pathology report. So call the number on that report -- the pathologists office -- or look it up and call them. Then simply tell them you want the complete slide set and how do you get it. They will tell you which will probably entail you signing something which they sometimes want done in person or by mail but can be done via fax if you persist. Anyway, work with the pathollogists's office and/or hospital records department and you will no doubt get things faster. If you decide not to be proactive and call your doctor's office for them please don't cry to me when you never get them :)

-- Jim
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131817 tn?1209529311
Mike, nice description of what happens!  Thanks. I have a bx schedule 2/29.  

Myown,  Are you starting tx again?  you didn't tell me girl!  I just want to know how you got your hands on Alina and the whole kit and kaboodle about your re tx. How long, etc.  
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Avatar universal
Thankyuh kindly.
MO

ps. so who do I ask and do I have to give the slides back?
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Avatar universal
From:  http://www.surgeryencyclopedia.com/La-Pa/Liver-Biopsy.html

"After the biopsy, the liver sample is sent to the pathology laboratory and examined. A normal (negative) result would find no evidence of pathology in the tissue sample. It should be noted that many diseases of the liver are focal and not diffuse; an abnormality may not be detected if the sample was taken from an unaffected site. If symptoms persist, the patient may need to undergo another biopsy.

The pathologist will perform a visual inspection of the sample to note any abnormalities in appearance. In cirrhosis, the sample will be fragmented and hard. Fatty liver, seen in heavy drinkers, will float in the formalin solution and will be yellow. Carcinomas are white. The pathologist will also look for deposition of bile pigments (green), indicating cholestasis (obstruction of bile flow). In preparation for microscopic examination, the tissue will be frozen and cut into thin sections, which will be mounted on glass slides and stained with various dyes to aid in identifying microscopic structures. Using the microscope, the pathologist will examine the tissue samples, and identify abnormal cells and any deposited substances such as iron or copper. In liver cancer, small dark malignant cells will be visible within the liver tissue. An infiltration of white blood cells may signal infection. The pathologist also checks for the number of bile ducts, and determines whether they are dilated. He or she also looks at the health of the small arteries and portal veins. Fibrosis will appear as scar tissue, and fatty changes are diagnosed by the presence of lipid droplets. Many different findings may be noted and a differential diagnosis (one out of many possibilities) can often be made. In difficult cases, other laboratory tests such as those assessing liver function enzymes will aid the clinician in determining the final diagnosis."

Mike
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