Lymphoma/hepatitis C

My husband has recently been diagnosed with non-hodgkins lymphoma.  In doing some research I discoved that there may be a connection between lymphoma and hepatitis C.  Now I am freaking out and wondering if this is my fault.  Twenty-five years ago I may have had acute hepatitis C, but have not had any symptoms or problems for the last 24 years.  I am afraid that he has contracted it from me (we have been married for twenty years)and it is the cause of his lymphoma.  Here are my questions:
1. They have done a number of blood tests on him; would those have revealed the presence of HCV?
2. I have had numerous blood tests for my workplace done over the last twenty years; would those have revealed the presence of HCV?  I was told once or twice that my liver functions were high, but I was a heavy drinker at the time.
3.  What are the chances that he contracted it from me?
4.  What are the chances I hace HCV and don't know it?

[ellissg]

For about 10 years, my blood work that I had in conjunction with routine physicals, show "slightly elevated" liver enzymes. Not once did a Doctor suggest I get checked for Hep C.

In January, an Emergency Room, very young Doctor, treating me for a Urinary Tract Infection, told me to tell my Family Doctor to order a Hepatitis blood test. It came back Positive for Hep C. Regular blood screenings do not include that test.

[Fubarcat]

I agree.  My liver functions tested abnormally high for 10 years and not once did any of my doctors even consider testing for HCV.  The docs never even made a suggestion to do anything about the elevated enzymes.  I was never a heavy drinker, but I did enjoy wine every night (a glass or two) and I guess the docs just thought my abnormal test results were a result of my drinking wine.  I was an "ostrich".  I stuck my head in the sand and never questioned my docs about why the results were high.  (Guess I was afraid to know something might be wrong because I felt totally healthy with no symptoms whatsoever).  Finally, for some reason, I guess a light bulb came on and the doc ordered the test which was, of course, positive for HCV.  I think doctors now are much more attuned to HCV and will order tests a lot quicker than they used too, say, a decade ago.  Not sure what I would have done about it if I had known 10 years ago, so guess it doesn't matter anyway.  But, just a warning for anyone "lurking" here.  If your liver enzymes are abnormal, ASK FOR A HCV TEST!  It's best to find out earlier because there may be more or better options for you than if you find out later.

[honey1616]

Yes I totally agree with you and people are becoming more aware of hep c.  No you were not an ostrich but trusted your doctor and also if we don't feel bad....we are not going to the dr to run tests and I really think that is what happens to so many of us until one day we are sick with symptoms.

[TnHepGuy_]

I'm very sorry to hear of your husband's diagnosis.

You both have many unanswered questions right now - and it would be best to gather them all up and present them to your caregivers. You could ask your doctor(s) to test the both of you (via qualitative testing) for HCV. Your past elevated liver enzymes could be indicative of the presence of HCV - but not definately. It this point in time, it really is irrelavant who might have given what to whom. The bigger questions are the more immediate medical ones - such as his NHL - and the possibility of each of you having HCV. You can get the HCV ones answered with some lab work.



In case you haven't seen it, here is a <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15095303">study</a> that links 1 out 8 NHL cases to Hep C.

Here's <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14994393">another study</a> showing an association between Hep C and NHL.

And here's <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15006919">another study</a> that looked at a population of women and found an association between Hep C and NHL.


May God's blessings and mercy be upon you and your husband.


TnHepGuy

[ellissg]

After I was diagnosed, one of the first Hep sites I visited specified that elevated liver enzymes is a warning sign for Hep, as is fatigue and other things. I still feel sad when I think that I could have known earlier. However, the new treatment worked so well, and the old stuff could have been a waste of time. Maybe it was meant to be.

[cuteus]

there are, I believe, 6 diferent types of hepatitis. they don't routinely test for hcv unless you specifically ask.  Your next stop for both is the lab for the hcv test, since you could have had ANY hepatitis 24 yrs ago, they may order other hep tests in conjunction with c. GL to both of you.

[TnHepGuy_]

That is 'twotells' who was on the Rituxan to treat his cryoglobulinemia. Hopefully he'll see this thread and add his knowledge and experience.

[twotells]

Hepatitis C virus and risk of non-Hodgkin lymphoma

[twotells]

Wrote a post and deleted it, well, here goes again.

After starting Pegasys/Ribavirin in Jan 2003, I developed severe pain in back, legs and feet.  Five specialists and 2 months of misery later, I was diagnosed with cryoglobulinemia and peripheral neuropathy.  I tested at >7 Cryocrit (test for cryoglobulins).  Apparently the cryoglobulinemia is a 'B' cell disease associated with chronic HCV in 5% of us.  In my case it was exacerbated by INF.  It can interfere with HCV Tx, leading to a failure to clear the virus or failure to maintain SVR.  It causes vasculitis and, in turn, peripheral nuropathy in many of us.  It can cause renal failure, and apparently be associated with Lymphoma.  The cryocrit is not routinely done for HCV patients.

Fortunately for me, my Hematologist/Oncologist fought for Rituxan (Rituximab) from my insurer.  It was approved in 1997 or so for Non-Hodgkin's Lymphoma.  It is just now starting to be used for all kinds of 'B' cell diseases (eg. Cryoglobulinemia, Lupus, Rheumatoid Arthritis).  I had 4 weekly infusions last summer while I was still on Pegasys/Ribavirin.  My Cryocrit was knocked down to ~3 (from >7) in one month and then went to a trace in another month.  The nerve damage has improved but may take 2 yrs to heal.  I could be left with some permanent nerve damage.

Eldo, I hope and pray for the best for your husband and yourself.

Dave

[twotells]

I'm going to try to add a link about Rituxan, Cryoglobulinemia, HCV and Non-Hodgkin's Lymphoma:
<a http://intapp.medscape.com/px/medlineapp/getdoc?ord=1&searchid=1&have_local_holdings_file=1&local_journals_only=0&searchstring=rituxan+%2B+HCV="link">The successful induction of remission with the monoclonal anti-CD20 antibody rituximab in a patient with hepatitis C virus (HCV) associated cryoglobulinaemic vasculitis and a non-Hodgkin's lymphoma (NHL) resistant to previously advocated conventional treatments</a>

Dave

[twotells]

I'll try one more time:

<a//intapp.medscape.com/px/medlineapp/getdoc?ord=1&searchid=1&have_local_holdings_file=1&local_journals_only=0&searchstring=rituxan+%2B+HCV="link">The successful induction of remission with the monoclonal anti-CD20 antibody rituximab in a patient with hepatitis C virus (HCV) associated cryoglobulinaemic vasculitis and a non-Hodgkin's lymphoma (NHL) resistant to previously advocated conventional treatments</a>

If I still haven't learned this, here's the address:

http://intapp.medscape.com/px/medlineapp/getdoc?ord=1&searchid=1&have_local_holdings_file=1&local_journals_only=0&searchstring=rituxan+%2B+HCV

This was found through Medscape, so you may have to register there to access it.

Dave

[Salamore]

Yes their is a connection between Hep C and Lymphoma, I'm one of those cases.  While my story is long, I will keep it simple and sweet.  A few years back I started to have some swollen lymph nodes, but no other signs of lymphoma, then I had a small tumor appear in my cheek and had problems breathing.  After several doctors and 8 months later, one physician got suspicious, he referred me to Yale New Haven Hospital. After  surgery and a biospy, and a Pet Scan I was dx with Stage IV Non Hodgkins Lymphoma, Marginal B Cell.  When I first meet the Lymphoma specialist he said this might be Hep C, well he was right.  They found that I also had a tumor wrapped around my trachea so we started with 6 cycles of CHOP + Rituxam.  Currently I just finished 24 weeks of Pegasys and Copesus for genotype 2b, stage 1 Hep C.  I am cancer free, and my Hep C virus was cleared after 9 weeks of pegasys and copesus. I thank the Lord every day for being ALIVE and surrounding me with the best doctors in the North East.

Please email me if you need to talk at ***@****.


Renee

[Eldo]

I'm going to go get tested tomorrow.  I'm also trying to acquire my medical records from 22 years ago.  I swear I don't remember the doc saying anything about Hep C at the time.  Buy I was an IV user at the time and lied to the doctor about it (I was too embarassed to tell the family doc about my recreational drug use). It is so ironic.  I completely turned my life around a long time ago and now I'm going to pay for the sins of my past. So now, 22 years later, I'm in the greatest shape of my life.  Quit drinking about 5 years ago, eat a good diet and exercise regularly.  I have always worked in jobs where I was medically monitored.  I checked one of those form 1986 and my SGOT was just slightly elevated.  A physical a few years back, as I recall showed just slightly elevated levels.  So what is mt prognosis now.  Could I have cirrosis (cirrhosis) and not know it?  Are there reliable treatments for this (I know there's no cure).  Ya know, I remember getting blood tests once a week for several weeks while I had my symptoms, but no one ever told me I could have this for life.  I don't recall if the doctor even tested for hepC at the time.  It was a long time ago and I guess that's all moot now.

[twotells]

I'm still trying to get the linking thing down, so I'll try again.  This link is a case study re: a 45 yr old woman with refractory (treatment resistant) HCV, Non-Hodgkins Lymphoma, cryoglobulinemia, and treatment with Rituxan.  It pulls all of these together into one optimistic story.

<a ref="http://intapp.medscape.com/px/medlineapp/getdoc?ord=1&searchid=1&have_local_holdings_file=1&local_journals_only=0&searchstring=rituxan+%2B+HCV "> Rituximab induces remission in refractory HCV associated cryoglobulinaemic vasculitis </a>

If this takes you to the page, you may have to register for medscape.  I wish you the best.  Dave

[twotells]

I hate to waste posts, but I'm determined to get this:

<a href="http://intapp.medscape.com/px/medlineapp/getdoc?ord=1&searchid=1&have_local_holdings_file=1&local_journals_only=0&searchstring=rituxan+%2B+HCV"> Rituximab induces remission in refractory HCV associated cryoglobulinaemic vasculitis </a>

[twotells]

That URL no longer works, here is one that should work:

<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14644867"> Rituximab induces remission in refractory HCV associated cryoglobulinaemic vasculitis </a>

Renee:  Did you also have cryoglobulinemia and/or peripheral neuropathy?  Although I didn't have cancer, I got the rituxan.  I've never talked to another person with this diagnosis and treatment with the rituxan.  God Bless you,  Dave

[Salamore]

Hi twotells,

I don't know what cryoglobulinaemic vasculitis is?  I'm sure if I had that my doctors at Yale would of told me.  When I was dx with NHL my Oncologist said that a study was being done regarding the link between Hep C and Lymphoma. If you can cure the Hep C then more then likely the Lymphoma won't come back. During my 6 cycles of CHOP + Rituxin, my Oncologist was hoping I could also eradicate the Hep C, but for me that wasn't the case.
So After the Cancer treatments I waited a while for my body to get stronger, and then was referred to a Liver Specialist who is now treating me for the Hep C.  I have meet several people on other boards who have been in the same medical situation so it is not unusual.  Tonight is my last shot I can't wait for this to be over.

[twotells]

Congratulations on your last shot!  

According to one of the links posted above, there is an association between cryoglobulinemia, HCV and Non-Hodgkins Lymphoma.  That is why I asked.  I'm wondering if these problems are sequential in some people (HCV- Cryoglobulinemia- Lymphoma).

The cryoglobulinemia is a 'B' cell disorder which commonly causes vasculitis and peripheral neuropathy but can cause kidney failure.  The constant pressure of HCV causes some people to undergo changes in 'B' cells where they produce these abnormal immunoglobulins which effect the blood vessels.  Apparently, 50% of people with HCV have cryoglobulins in their blood and 5% of people with HCV have symptomatic cryoglobulinemia.

For some reason, these 'B' cell disorders interfere with tx for HCV.  What seems to be happening is that the Rituxan is being used to deal with the 'B' cell problems so that the HCV tx can proceed.

Take care,  Dave  

[cuteus]

If you can't get your records of 22yrs ago, don't fret too much.  This disease just got its own name in the mid 90's. before that it was called non A non B hepatitis.  It is not a test most drs think of ordering, and even when there are extrahepatic signs of hcv it might take them a while to think hep c.  I even wondered why the bone marrow registry didn't test for it. NO matter now, we must fight this with today's information.
The person who dx my hep c had seen me the year prior and did not think of ordering the test then.  concentrate in dealing with your illness now, and stopping the progression of the viral attack.  make sure you get a biopsy soon.
GL

[twotells]

Apparently, I had this cryoglobulinemia for years but the symptoms were low key until the Pegasys exacerbated it.  Within a week of starting Pegasys/Ribavirin on 1/25/03, I went from dramatic numbness in both feet to severe 'electrical' type pain jumping down both legs.

Looking back, I can see that the minor numbness on the outer part of my left foot, periodic achyness in my legs and feet, very thin calfs, and hairless patches on my lower legs were signs of the cryoglobulinemia for ten years or so.  I and my doctors always attributed these things to other problems, like flat feet, herniated disk, etc.  I also remember occasional numbness in hands and feet and an itchy-tingling feeling in my hands and sometimes feet.  I basically ignored the numbness because it would go away.  It was worse when my hands and feet were cold and there were times that my skin on fingers or toes would turn greyish.  The fact that the achyness was getting worse is what got me to the Rheumatologist (also elevated Rheumatoid factor) in May 2001, which is how I discovered I had HCV.

I never had purpura and still don't.  It's amazing to me that the Rheumatologist, my Orthopedist (from 1996 on), my Hepatologist, and a Neurosurgeon all missed the cryoglobulinemia.  Not to mention a series of GP's.  After 2 months of misery from severe pain, a second Neurosurgeon finally tentatively identified the cryo, and he wrote a letter to a Neurologist who then confirmed the cryo diagnosis and peripheral neuropathy.  At that point, I also went to a Pain Specialist and the Hematologist/Oncologist who again confirmed the cryo diagnosis and got me the Rituxan tx.

If the Pegasys hadn't dramatically worsened this problem, I would probably still not know what was wrong with me.  I would bet that only a small fraction of people with this problem know that they have it, and why.  My cryocrit was pretty high at >7 when it was measured in the beginning.  The large number of people with cryoglobulins which are <3 are probably asymptomatic.

Are you concerned that something may be going on with yourself?  I hope not, but it's worth getting the cryocrit.  My Hematologist assured me that his staff knew how to handle the blood specimen, to properly get it to the lab, since it is tricky, as you said.  I had heard the same thing somewhere about the lab needing to be on the premises and had asked him about that.  He assured me that the specimen could be handled properly and still sent out, if the staff knew what they were doing.  We still got a false negative once, which may have resulted from the cryo precipitating out of the specimen somewhere between my arm and the lab (probably from cooling, he said).  He was suspicious of that one and it was repeated.

I hope you're well,  God bless,  Dave

[twotells]

Aside from the swelling and purpura, your symptoms sound identical to what I had for several years.  I had the itching palms also.  I hope all is well.  I'll pray for you and wait to hear.  Good night,  Dave