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Avatar universal

Taking baby steps

went to see the hepatologist today, he wants to do treatment was very happy to see that I was geno type 2. Before starting treatment he wants to do a scope to see if I have veriance (?)  you guys know what I mean. Because my wbc was low and platlets also low. If I do hopefully I do not he will band them.  Nervious, happy, scared but looking to get this stuff out of my body! He also said that now its almost 90% for type 2. Seeing as I dont have any other choices I guess I'll do it. I am actually more nervious about the scope, band thing than the treatment. We also talked about the rh factor rhogram shots that I had in the late 70s and early 80s when I had my kids and seeing as I had none of the other exposure, drugs, surgery, bloodtrans. he was thinking that was a pretty good guess. :( wish me luck and here we go on a wild adventure.
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Avatar universal
I don't know if you saw flcyclist's post in another thread, but thought I would pass this on to you; it's about managing low blood counts:

http://www.chemocare.com/managing/low_blood_counts.asp

I find this whole "low platelet-low wbc-HCV connection" interesting, especially if one has had life-long low readings...long before HCV dx. This article talks about one's tendency for bruising, bleeding (i.e., lack of blood clotting) and I am more like the exact opposite; I heal from cuts, etc. very quickly and I rarely bruise when I probably should!

It also talks about the need to protect oneself from infection, etc. with such low resistance.  I'm wondering if one with low blood counts is more likely, or is more easily, to be infected with HCV just as they are with pneumonia, etc.?

Helpful - 0
Avatar universal
Hi Hector,
I want you to know I only commented on your post to mykids247 because 1) it sounded like she was just at the beginning of her journey with HCV and from my experience that can be quite scary from different things one starts reading, 2) my experience with the same blood labs and then a subsequent biopsy (conducted at the Mayo Clinic) did not reveal anything close to cirrhosis, 3) she is working with a doctor and it sounded like you did not think she was getting the whole story nor the rapid response she needed from him. Granted, you did not say that, but there seemed to be an urgency in your tone and you did say, "From what you doctor is saying you have stage 4, Cirrhosis liver disease". That could have been some shattering news to her since he obviously hadn't told her. (I wasn't clear on where or when he "said" that, but I now understand where you got it from.) I realize, and I hope others do, that these posts we write are just that, posts; interpretation can often be lost in a few short words.

My immediate main concern was that mykids247 or others could be alarmed if they have the same labs and to assure her/others there could be other reasons besides cirrhosis for those labs, and they are not necessarily indicative of being on a fast track to cancer. Just adding to your knowledge from my knowledge, not contradicting what you said.

It sounded as if you possibly did not interpret mykids247's post as I did (i.e., new to this, getting to a hepatologist, taking immediate steps toward treatment, emphatic about "...looking to get this stuff out of my body!" and rather optimistic and upbeat). From what mykids247 wrote, I think she may well have interpreted your post as I did, too.

I value your words from your personal research and experience; that is what we are all looking for on this site. I did not say you were diagnosing; that would have been an insult to you. I just said, "let's not jump the gun" more for her sake than yours or mine. I had no doubt you were stating facts based on sound data, but not necessarily the only data behind the labs...even for one with HCV.

Since I am somewhat in the "same boat" as mykids247 I do find the platelet-HCV topic of great interest, not only their connection, but especially how treatment can proceed when platelets drop too low.

Please continue to share your knowledge as we all appreciate it, and I thank you for caring enough to do so.


Helpful - 0
1718002 tn?1327386656
Wow, what a wealth of information in theis forum. I have been playing the "waiting game" with stage 2, geno type 1a per my doc's suggestion. When I saw him this mont he asked, "are you ready" and informed me that telaprevir got FDA approval and would greatly increase my chances with treatment including pegasays & ribavirin. So, 'm wondering if anyone has started this trreatment/protocall? I was alos confused when he said if my viral load was not under 1000 in 4 weeks that the traetment would likely be over. Can anybody help my learning curve? Thanks, B161
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Avatar universal
RE:  "First off, I have never heard of anyone being turned down for insurance because of their genotype.  Where on earth did you get that information from?  That is ridiculous."

Insurance and New Meds
by bab10, Jun 21, 2011 05:57PM
Anyone have any information as to what criteria the  insurance companies are using prior to approving the new meds.
by ginnie56, Jun 21, 2011 06:02PM
To: bab10
Genotype 1 only including treatment naive, partial and null responders.

I'm just learning...I see this applies only to new types of meds, not the tried and true for genotype 2. Sorry for any confusion.
Helpful - 0
Avatar universal
Hi there. Recovery from banding varices is not significant at all. There is no incision made and what Hector told you is correct. Also, while it is possible to have varices with cirrhosis, my bet is that you are fine. You will wake up from the endoscopy, possibly have an irrated throat, and be just fine. I went out for nachos after my last upper endoscopy. It sounds like you like the hep docc. I'm happy it worked out for you.  I have also answered your question about the AMA results in your other post. I don't know if you've seen it.

\Good luck with the endoscopy....it really is nothing. And if you need to talk just call.
Helpful - 0
Avatar universal
Hector please dont think that I dont appreciate all the help and advise I get here because its huge! I just got a tad freaked out as I do on a daily basis since I got this diagnosis. Trying to move forward with this and I think NOW that I found this md. with the help of somone here I CAN move forward and put this in the past and be done with it. Doing what ever it takes. Just worried about down time because I am a single woman with a very physical job, and I need to keep working. Have about 8 weeks of sick time and 3 weeks of vacation still available for this year and need to be able to still finacially take care of myself while I care for my health. Again thank you and I never ment to imply any negativity. :) good luck to you also. We all need a little luck, patience and prayers. Oh and a good doctor.
Helpful - 0
446474 tn?1446347682
It is always good to be cautious so your doctor is doing the right thing. Geno type 2 is an easier type of hepatitis C to cure then type 1 which is most common in the US. Treatment is peg-interferon and ribavirin and treatment is at most 24 weeks which is good.
Being infected with geno type 2 is why a biopsy is not needed. Because you have a very high chance of clearing the virus so the progression of your liver disease will stop.

I did not mean to say you weren't going to do treatment or was too ill to do treatment what I meant to say was IF you have cirrhosis you didn't seem to understand the seriousness of such a diagnoses. But apparently you have not been diagnosed with cirrhosis. Only your doctor can make such a diagnoses and I apologize if anyone thought that I said you were were not going to do treatment or had cirrhosis. I was basing my opinion on the abnormal lab values and presence of varices which as all complications of cirrhosis. Of course your doctor know best.

As I mentioned, variceal banding is a preventative measure. It is used to prevent someone from having their varices burst which causes a person to vomit blood. I didn't mean to say you already had incidence of bleeding. Or you had jaundice. Jaundice usually only appears with very advanced liver disease, End Stage Liver Disease (ESLD). I never said or implied that your liver is enlarged. When a person develops cirrhosis the liver shrinks in size and hardens. In earlier stages of liver disease the liver can become inflamed and can enlarge.

Does your doctor give a reason for your low platelet count, low WBC, high iron, enlarged varices?

I haven't had any banding done personally so I can't tell you from personal experience how long it takes to recover. All I know is from my friends that have had it done.

Again I apologize if I implied that you weren't doing everything you can to take care of your health and your doctor is your partner that will help you to do that. I am sorry if I upset you or seem to put words in your month. It was not my intention at all. I was only trying to help and if I failed I am sorry.

Good luck with your endoscopy and treatment!

Hector
Helpful - 0
Avatar universal
I dont think I said I wasnt going to do treatment, I have every intention of doing so. IF I am able. The reason I went to a hepatologist is because he is a gastro/ hep which not all are. We have a great hospital here where I live and this md is part of it. I have not EVER thrown up blood, or had bloody stools or yellowing of eyes or skin. Main my weight, and have a bounty full amount of energy. Not saying that I am not sick and not sticking my head in the sand by any means but hoping for the best trying to get the best treatment that I possible can to kick this crap out of my body and get on with my LIFE. I am not a doctor and can only go by what they say and do my research and talk to you guys here who have already been around the block with this crap. Oh ya I forgot my platelets were 62 out of what should be 140-415 on my first cbc they were 54 .he also does not feel I need a biopsy. I asked that question, I have been told on here they dont usually recommend for geno type 2
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Avatar universal
the reason he is doing the scope is because of the low wbc and platlets. I have no other indidcation of cirrhosis. The way I found out I had this was that I had a rectus sheath hematoma. In the ct. scan report it states. No intrahepatic ductal dilatation is identified. The aorta is normal in caliber. There is no adrenal mass identified. and my pancreas appears unremarkable. There is nothing in the ct. that mentions that my liver was enlarged. He did a physical exam of my liver, you know push on it and said it felt fine. What he told me was that he was being cautious because of the low wbc and platlets that if and when we start treatment he didnt want me to have a problem. Because I am geno type 2 . We did not discuss what type of drugs he was going to use to treat me. He first wants the scan done. All blood work came back fine except for those two I mentioned. and my iron was high 326 when it should be between 35-155 on my report. Does anyone know the down time after you have band done god forbid I need it.
Helpful - 0
446474 tn?1446347682
I am not trying to diagnose anyone here, only a doctor can do that. But I try to make an educated guess based on my own experience. I put together the information provided and try to create as full as picture as I can. Also based on my own experience with liver disease I err on the side of being safe, rather then sorry, when someone with what could be advanced liver disease seems to not be aware of the full seriousness of their condition and sound somewhat hesitant to treat. I'd rather be wrong and look like an idiot then have someone end up like myself with End Stage Liver Disease (ESLD) and now liver cancer (HCC). I have tried treatment and I know it is not easy for some. I had to go on disability and be bed ridden during my treatment but compared to what I have gone through in the last two years with decompensated cirrhosis and being diagnosed with liver cancer just this June 1, I can tell you I don't want to see anyone else go through this. I can just post some information on cirrhosis that the person may not be aware of that might relate to the labs, treatments, complications they are having I think it is worth doing.

While it is true the these complications can be caused by other illness it seems to me that someone seeing a hepatologist who is encouraging treatment, is posting on a hep c forum and has discussed with their hepatologist the possibility of banding most likely has advanced liver disease.

Why do I think MYKIDS247 might have cirrhosis?
* She is seeing a hepatologist. Most people do not see a hepatologist unless their liver disease is believed to be advanced.
* Varices are a complication of liver disease that is only found in people that have scaring of the liver which blocks normal blood flow through the liver. (see below for how this happens). In order to need banding the varices must be advanced. Varices can be a life-threatening complication of cirrhosis and should not be taken lightly.

How scaring of the liver (cirrhosis) causes complications:

"Blood flows from the spleen..... through the portal vein.... then through the liver.
Scar tissue in the liver (cirrhosis) can interfere with that blood flow...... causing pressure to build up in the portal vein (portal hypertension), and the spleen to enlarge (splenomegaly).
As the spleen enlarges, it traps platelets. (The amount of platelets in the bloodstream is reduced. The spleen is busy trapping them.) It also can lower WBC and RBC.
So usually--- people with cirrhosis end up having a problem with portal hypertension and an enlarged spleen, and a reduced platelet count in the bloodstream.
As time goes by, the liver may try to repair itself by growing new cells.
If there is alot of scar tissue already present--- the new cells grow between scar tissue (and result in abnormal nodules).
(The nodules and scar tissue can further interfere with blood flow through the liver.)
So over time-- people with advanced cirrhosis can end up having a problem with more and more abnormal nodules and scar tissue forming..... which interferes even more with blood flow through the liver.....
which makes the spleen continue to enlarge....
and the platelet count continue to drop." (Thanks IM for this discription)

Best regards to all.
Hector

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Avatar universal
i am not sure about the advantage to adding incivek to tx for geno 2. i am guest guessing, but  if i had cirrhosis and thought i have one chance to treat, i might want to go for it.  but i  would have to weight the greater efficacy against the greater chance of significant side effects that might make it impossible for me to finish treatment with incivek.  my pcp told me of a patient with geno 2 that did not get to svr with soc.

if i had geno 2, i would have attempted treatment four years ago. at that time, the president of vertex, was saying fda would approve incivek by 1999.  so with geno 1a i thought i would wait a couple of years.  2 years turned into 4.  
coeric
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223152 tn?1346978371

Coeric
Dave did correct me on another post that Incivek was effective for geno 2 but not 3.  However, like he said, there is already a high SVR rate with SOC so why add the third med?
frijole
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Avatar universal
frijole and hector know what they are talking about.  the hepatologist either has done a biopsy or suspects cirrhosis so that is why he is recommending the endoscopy.  i had one 4 years ago, and i was given a light general anesthesia, and don't remember anything about it other than the doc saying "no varices" as i was coming up out of unconsciousness.  i may need to redo it in the next few weeks.  low platelets are a predictor for varices.
http://www.ncbi.nlm.nih.gov/pubmed/17577118
blessings,
eric
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223152 tn?1346978371
mykids
Hector has given you some very good information here.  Straight to the point.   Please do consider treating soon.  The treatment is not easy but you may be able to treat in 24 weeks, depending on how you respond.  Good luck on the endoscopy.

laproch
First off, I have never heard of anyone being turned down for insurance because of their genotype.  Where on earth did you get that information from?  That is ridiculous.

Secondly, I think Hector made a good call.  Believe me, he has life experience here and his thoughts are not entirely based on WBC and platelets although those are strong indicators of cirrhosis.   The doctor would not be looking for varices unless there was  a reason.  So either mykids has had a biopsy indicating cirrhosis or there are other factors - enlarged liver, for one.

hector
Thanks for putting out straight forward information.  You are a valuable asset to this forum.

frijole
Helpful - 0
Avatar universal
RE:  "From what you doctor is saying you have stage 4, Cirrhosis liver disease. Because your platelet count and wbc is low these are usually indications of cirrhosis."

Wow, that's a serious interpretation of low platelets and low wbc! Or did I miss something else the doctor said? I had a liver biopsy done with a platelet count of 119 K/ul (reference: 147-354 K/ul) and a low wbc, and I was nowhere near having cirrhosis of the liver. I just had blood work done this month with lower platelets and wbc; two doctors review my labs and nothing was said about "cirrhosis"! (I would hope they would mention it if if were a real concern?!?)  So, this may not be as serious as it may sounds.

Until one hears "cirrhosis" or "cancer" from the doctor, let's not jump the gun. Both of these low counts can be due to other things like common variable immunodeficiency and idiopathic thrombocytic purpura. I've had ITP my entire life and it has not been any big deal; however, it will be now if I want HCV treatment since, just as chemotherapy lowers platelets, so does HCV treatment. :(
Helpful - 0
446474 tn?1446347682
Have you had a liver biopsy? From what you doctor is saying you have stage 4, Cirrhosis liver disease. Because your platelet count and wbc is low these are usually indications of cirrhosis. How low are your platelets? Under 100,000?

From Mayo Clinic website:
"Esophageal varices are abnormal, enlarged veins in the lower part of the esophagus — the tube that connects the throat and stomach. Esophageal varices occur most often in people with serious liver disease. Esophageal varices develop when normal blood flow to your liver is slowed. The blood then backs up into nearby smaller blood vessels, such as those in your esophagus, causing the vessels to swell. Sometimes, esophageal varices can rupture, causing life-threatening bleeding."

I have had a number of endoscopies to monitor my varices. You won't be conscious so you won't feel a think during the procedure. If you are banded then you will have to be careful about what you eat for awhile and you may have a sore throat. Banding is a preventative measure to prevent you from having your veins burst.  If this happen you with vomit blood. You hepatologist will also probably have you take a beta blocker med which will lower your blood pressure (portal hypertension). A common one is Nadolol.

You must realize that you need to treat your virus soon before it damages your liver any more. If your liver becomes too damaged you will be unable to undergo treatment and your only option will be a liver transplant. Something you want to avoid if at all possible.

For your own knowledge you should ask your doctor about how advanced your liver disease is and what if any precautions you should take while living with cirrhosis. Also I assume you are having ultrasound scans or CT scans every 6 months to monitor for liver cancer? If not. Ask your doctor about it as having hepatitis C and cirrhosis of the liver make you prone to liver cancer (HCC).

Go luck with your treatment. Let us know how you're doing.
Hector
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Avatar universal
What is your treatment going to be and for how long? Someone posted earlier that insurance does not cover genotype 2 treatment...are you using insurance? Thx.
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