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Avatar universal

spleen cysts and inflamed lymph nodes

I went to the emergency the other night because of lower abdominal pain that ran all the way across my abdomen and feeling nauseous.  I have a very high pain tolerance and the pain was enough for me to be doubled over.  On a scale of 1-10 this was a 8-9 for me. They took several x rays and a cat scan.  They thought I might have a intestinal blockage and commented that my gut was making a lot of noise.  The x rays showed nothing but the cat scan showed several cysts on my spleen and my lymph nodes were inflamed.  I have felt bloated and every time I eat I become nauseous, even when I drink water.  They gave me morphine, that didn't help the pain at all and then they gave me something stronger(can't remember what it was at that point)that helped dull it.  They basically told me to go see my regular dr. in 3 days and that I should have it rechecked in a year or less.  They sent me home with a codeine type pain medication and said to drink lots of fluids.  They think (but are not sure)it might be caused by my sinus infection that I've only had for 2 days.  I'm not on any antibiotics because my dr. normally tells me to let it run its course. They either did not tell me (or I can't remember) why my lymph nodes are enlarged.  It now feels like the nodes under my jaw is swollen and I have a sore throat.  I am in my early 40's and have 2 children 7 & 2 yrs old.  Both of them were c sections and after the last one I had a tubal ligation done.  Since then I have had pain off and on in my lower abdomen and have light spotting after my period.  My question is: can all this connected and should I be concerned that there might be something else more serious going on?  Any info is greatly appreciated.
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Avatar universal
Yeah, and had my eyes shut, hoping the door would close!
Cheers. and stay well!
Sonic
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Avatar universal
Sonic: Sorry, jmjm, I posted that in the wrong thread!
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That's OK, you probably just weren't listening :)


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Avatar universal
Sorry, jmjm, I posted that in the wrong thread!

re "BTW do they teach you guys in med school to slowly walk backwards out the door while talking, and close it quickly when the patient blinks :) Forgive me, you know I'm just kidding (sort of) but as long as we're on the topic of "sniping" I thought I'd exchange some friendly fire. Please take the comments with affection."

Of course! "Walking backwards and door closure 101" is basic training, first year med school.  Actually it
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Avatar universal
Yes, it would make me wonder, and in fact seriously think about dumping him, if indeed your doc doesn't put any importance into genotype. No, make that I would def dump him. Is your doc a hepatologist (liver specialist). In general, they know A LOT more about HCV and its treatment than a GP or Gastro.

Genotype is an important part of the decision whether to treat or not. It's also an important part in terms of how long to treat should you make that decision. In any event, you want to know your genotype.

Personally, I wouldn't treat right now in your shoes, even if genotype 2 or 3, but more so if genotype 1.

Tweaking my answer a little, I might consider giving myself a four-week stop rule if genotype 2 or 3 --  meaning if you're still detectible via sensitive TMA at week 4, then stop treatment. If non-detectible, then treat short-course for 12 weeks with Peg Intron. This strategy would limit your time to the the treatment drugs, but it would still expose you to intereferon and ribavirin for either 4 or 12 weeks. Several short-course studies back this up, with the caveat that I believe a couple of them suggest your chance of SVR is diminished around 8% with this approach but still a healthy 80% chance of SVR using the shorter-course. Other studies suggest that SVR rates are about the same (12 or 24 weeks) if you're non-detectible by week 4. Viral load may come into play here -- or not -- haven't read the studies recently.

My personal preference in your case is as I've stated in other threads to watch n' wait and all that entails. "Sonic", above, has given you a nicely balanced response outlining some of the plusse's and minuses.

Anyway, no rush, no rush at all. Take your time deciding and the right answer will eventually come.

All the best,

-- Jim
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Avatar universal
First, I'd like to again thank you for your professional and intelligent contributions here at MH, at times in the midst of let's say "sniper" attacks :)

The whole issue of side effects -- primarily post treatment side effects -- is one that we love to discuss (and fight about) here. Many doctors, like yourself -- and probably mine own -- pretty much lay it out like you did above.

My point for discussion, as well as some others here, is that the side effects from treatment -- both during and post tx -- is under-reported, under-valued by the doctors, and under studies by anyone, esp the drug companies who really don't want to go looking for problems after spending hundreds of millions on FDA approval.

I also think we as patients share some reponsiblity in terms of often minimizing side effects when we see our doctor, or let's call it putting on a good face. I often did it during treatment because frankly I was scared they would either reduce my meds -- or pull me off of them entirely -- if I told them how I really felt. So, I told them enough to get helper drugs, but not enough to get them worried. This dynamic -- and I'm sure I'm not alone here -- I'm sure is not uncommon. Combine this with the fact that doctors that treat HCV, are in many cases in the business of treating HCV and may be too close to the issue, to the drug companies, etc, etc. to be truly objective.

In any event, this isn't meant as a debate but just a statement as I know you're relatively new here. If you have the time, you might want to spend an hour or more going through these threads below from MH which are primarily on post treatment side effects. Of course, they're anecdotal, but what else really is there with so few studies on the issue. I guarantee you this, you will hear stuff in these threads that I have a feeling your patients won't tell you. I know that true, at least in my case, because some of the things I referred to in some of these threads I never discussed with my doctor both for the reasons given and also because I felt -- by his attitude -- that he would have diminished them anyway, for whatever reasons.

All the best,

-- Jim

Here are the threads:

http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html
http://www.medhelp.org/forums/Hepatitis/messages/46376.html http://www.medhelp.org/forums/Hepatitis/messages/46380.html
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Avatar universal
Thank you for answering me...well it helped some , but it's still like you said, no one knows for sure..if i was to wait and keep retesting, can you tell me what tests to get and how often? does it have to be biopsys , yearly if i went that route for now? or is the fibrosure an effective test?
my vl was 3million, but i was drinking alot of wine daily before i found out that i have this hvc.,(thru insurance blood test)...i am not doing that anymore..
today when i asked mydoc if he had the genotype back yet, he asked why i wanted to know the genotype...which surprised me that he  asked that...don't I need to know that and him too? if he is my hep doc?
thanks for taking the time you have with me...i know alot of people are in alot worse shape than i am...but there are a few new people here also that have been asking similar questions, i hope this helps someone else too..and also thank you for giving of your self here helping people...i am sure you are very busy!!
pitter
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Avatar universal
hi jm,
thanks for your comment,)even tho it wasn't to me)  i still have what you have told me in my mind, and i think you also have alot of knowledge and first hand experience!!!! i am still so unsure of what to do...so i am just asking alot of questions...what do you think of my doc asking me why i wanted to know what the genotype is? that made me wonder about him.
thanks a gain to you jm too for your helpfulness here..
how are you feeling?
pitter
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Avatar universal
Hi pitter,
They are difficult questions.  
Obviously if medications cause you problems, treatment for HCV is likely to be  aproblem for you; there is no doubt interferon therapy can be quite rugged and ribavirin, especially for a woman, is not without problems.  HOWEVER, it may be you don't have RA at all (its difficult to say without seeing you); sometimes the high level of immune activation seen in patients with HCV causes FALSE antibodies that react with RA (and lupus and other diseases) tests to develop.  It is also true that you (as a woman with short duration disease) are more likely to clear the virus with treatment than not.  The lab REALLY needs to repeat the genotyping, as as a treating Doc I would send them a rocket to make sure they did it for you.

At 50-ish, in the US, all else being equal you have an extremely high probability (probably >80%) of making 80 in good health and living a fulfilling independent existence.  The issue as I see it then is whether HCV would limit that otherwise excellent life expectancy, and like most patients (persons) with HCV it is NOT possible to prognosticate with absolute certainty; maybe the disease will not cause you problems maybe it will; we have no way of knowing WITH CERTAINTY.

What I would say is that many folk do tolerate treatment better than they anticipate; I have many patients (I have probably treated in excess of 2000 patients now) who have had few problems with treatment and have been able to perform at high level in their job, social and sexual life despite therapy, including some small women, and including some patients whos job requires high evel physical and mental functioning.  The only way you would know this is to "suck it and see",  The other issue is treatment duration.  Statistically, you are likely to have genotype 1, but if you had genotype 2 (or maybe 3) then 24 weeks of therapy may be enough for you anyhow.  Hence, your decision MAY be determined by genotype, and this information (as well as viralload etc) is critical.
Sorry I can't give you specific advice, but I hope this helps,
Cheers,
Sonic

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Avatar universal
Hi pitter / jmjm,
Pleasure.
Look, pitter, I wouldn't advocate dumping any Doctor, but as jmjm says, genotyps is SERIOUSLY important and if the critical determinant of how long to treat someone, and how likely ther are to respond to treamtent.  Therefore, if you don't have that info you aren't at first base in the rational treatment of HCV.  I generally advocate treating EVERYONE unless there are good reasons not not (advanced age, lethal co-morbidities, major psychiatric issues etc etc), hence have never pushed the biopsy line (as I have exponded in my previous posts).  Get your Doc to get that infor for you.

Serial biochemistry (LFTs) will help a bit, but I don't do serial biopsies.  Not [yet] convinced about the value of ultrasound or MRI tests of fibrosis (they may help some, but so what?  I will still suggest treatment of their HCV even if they are not fibrotic and if they are cirrhotic sure they are less likely to respond, but they have nothing to lose etc etc).  Unless you have MAJOR treatment issues, I'd go for treatment.

I hear what you say jmjm, and have posted on some of those side effects (autoimmune hepatitis trigger, for example).  There are many patients I see that do describe weird side effects to me.  I have always assumed that its not the messenger thats weird (altthough HCV DEFINITELY disturbs cognitive function), just that we are using an incredible toxic combination of drugs that have very complex and incompletely understood actions.  I'll look at the other URLs you posted when I get time.
Thanks for the heads up about these.

As to sniping...You call that sniping?  You should go to the AASLD meeting once in a while, there are professional snipers there! (not really, they are all pretty committed Docs actually; anyone who would travel to Chicago (where they used to hold the meeting) in November from sunny Australia has to be committed).
Cheers,
Sonic
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Avatar universal
Sonic: ..Look, pitter, I wouldn't advocate dumping any Doctor
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Of course, Sonic is correct, and you do understand I meant not "dump" but perhaps "switch" to a doctor more knowlegeable -- if in fact your doctor doesn't think knowing genotype is important, or even if he doesn't think it's important for the patient to know it. As to the latter, at least for me, it's important I see a doctor that includes me in the decision making process, but some folks prefer to put that in their doctors hands.

-- Jim
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Avatar universal
,,,I am storing all of this...and will continue reading here...
Many THANKS again !!
Pitter
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Avatar universal
Sonic: As to sniping...You call that sniping? You should go to the AASLD meeting once in a while, there are professional snipers there!
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Hmmm. If how doctor's "listen" to the patients is any example, then maybe they don't listen to each other very well in professional settings either :) I read somewhere that they did a study on doctor's average "listening quotient". They found something like the average doctor will interrupt a given patient within 20 seconds or so, with some world class professional listeners, holding back for 60-90 seconds. As a patient who wants to be involved in treatment, I find managing  the time at my doctor's extremely challenging knowing at any second there may be that knock on the door (nursus interuptus) and then my time is up. BTW do they teach you guys in med school to slowly walk backwards out the door while talking, and close it quickly when the patient blinks :) Forgive me, you know I'm just kidding (sort of) but as long as we're on the topic of "sniping" I thought I'd exchange some friendly fire. Please take the comments with affection.

All the best,

-- Jim
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Avatar universal
do you suggest any of those  hepc handbooks , or any thing else to read for  questions like , is it ok to  take vitamins...which ones  etc???
thank you again
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Avatar universal
first Shirley, sorry i can't say more than ,i wish you wellness..
i need to ask sonic a question ok? hope not being rude
hi Sonic-- you helped me last week explaining the lymphocytes etc...i know you know what you are talking about, and so much appreciate any answeres from you
i have another question...if you can or want to answere...
i got biopsy done, and don't have genotype( lab forgot to do it) have to get a 4th blood test now!
but damage is 0 to 1 ...i just don't know what i should or not do...i do not want to take the treatments  as i don't deal well with meds...i have RA (unless it is the hepc, don't know 4 sure,) RA was not in my blood when i came down with serious sx..it got better after 1.5 yr. on steroids and anti inflammatory drugs..the RA  was  a 8 out of 10 (pain and stiffness) is now about a 2 level.(started about 8 yrs ago...) ra does run largely in my family...
point is , that i allready don't feel well alot of the time...and i have anxiety and depression...i take a small amount of xanax to sleep cz i have insomnia too...so i am afraid to add on the interfuron and etc...
i have been offered a few opinions,  to wait and get tested regularly for damage,
which is an answere i liked...i am 52 female...
i think i may have gotten the hep about 8 yrs. ago..of course not sure...
i will treat  if i have to...
thank you for reading...and for all that you are helping...
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Avatar universal
I am not sure what your diagnosis is (an I doubt the people you saw last night do either) but I think you need this followed up much more rapidly that "a year or less" (I can't believe anyone would say this, btw.  

I'd suggest seeing your own normal Doc ASAP; it may be there is a simple and benign explanation for this (severe constipation, for example, might produce the pain and intestinal blockage symptoms), but I'd want to exclude more significant problems ASAP.  Splenic cysts, for example, are unusual and can be a manifestation of infective endocardidits, for example.

The upshot is that many different problems (Crohn's disease, mesenteric adenitis, appendicitis etc etc etc) could produce many of these issues and as they are all potentially important you should seek the opinion who has knowledge of your past health issues, can evaluate your symptoms first hand, exxamine you properly and review all the relevant tests performed.  It is possible, for example, that the splenic cysts are congenital / have been seen before and are, therefore, irrelevant to the immediate problem.
Its not hepatitis, you will be glad to know.
cheers,
Sonic
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