Hi Deb, sorry to hear that your partner has MZL. Your question would be a good question for Dr. Dieterich in the Hepc expert forum - if you look to the right, you will see 'expert forum' and you can click on it.
I have read that HCV can in some cases cause lymphoma and it seems there is or can be a connection to cryoglobulins.(One of the reasons I have tried to get the test correctly done over and over to no avail) Not saying that everyone with cryo gets Lymphoma though...
Does your partner have cryoglobulins?
Found some info below. Hope it helps.
Nice to meet you.
how do they test for cryoglobulins? my grandmother has Waldenstrom's.
It's almost impossible or maybe IS impossible to find someone to do the test correctly. And I have been to the best, but its not the doctor doing it,,,its always some kid who can't wait to go home for the day....The tube has to be a certain temperature etc. It is very - very specific and this forum is where I found out how specific it is. I think it was a girl named Miss - Miss or something that said make sure you bring the print- out from the internet so that its done right,,,,,,but I went a step better, but thats another story,,,,,50% of people with HCV have cryo too. It is not a test that these techs should be doing. An NP or even a doctor should be specializing in this as far as I am concerned.
Thanx MO for responding.
I understand that lymphoma is a rare manifestation of HepC. I know there is a link between the presence of cryoglobulins & lymphoma but also that is not definitive either, since many of us with HepC have cryos present.
My partner asked his Haem to order this test after I told him that they look for specific cryos (mixed cryoglobulinaemia) as a link between the HepC & NHL . He will have it done at the hospital soon.
They have to transport the blood in a special thermal unit (keep it at body temp) in order for the test to be performed.
He has complicating liver issues too (F4 cirrhosis) & has had a liver resection to remove a hepatoma which developed at the end of his tx., about 2yrs ago now.
So, his case is a bit complicated as far as re-treating goes & we're anticipating some resistance from his gastro specialist in that regard.
I believe they are offering tx for relapsers that can be successful despite all his issues.
Just trying to find out what else is available.
I will indeed check the expert forum here.
Appreciate your response
Hepatitis C Fuels Non-Hodgkin's Lymphoma Risk
"May 8, 2007 — Patients with hepatitis C have a 20% to 30% increased risk of developing non-Hodgkin's lymphoma and a 3-fold higher risk of developing Waldenström's macroglobulinemia, a low-grade lymphoma. "We demonstrated that infection precedes development of these outcomes and that the risk in individuals infected with hepatitis C is consistently increased, with more than 5 years of follow-up," reports the team led by Thomas Giordano, MD, from the Baylor College of Medicine and the Michael E. DeBakey Veterans Affairs (VA) Medical Center in Houston, Texas. Risks were also increased for cryoglobulinemia. The study appears in the May 9 issue of the Journal of the American Medical Association...."
I had an extrahepatic lesion when I was acute that looks/looked very suspicious for that type of skin issue with mixed cryos. And of course Waldenstroms (and any number of other fun ai illnesses) runs in my family. It should be noted that my grandmother does not have hepc, I did get them to test her to make certain just so we wouldn't be overlooking anything in her care. But I'm already not batting 100 on the whole "suspicious for Waldenstrom's" some day deal because unfortunately I have a few of the hallmarks, early osteoporosis, normocytic anemia of unknown disease, some issues with protein in the past... So I've just got to keep an eye on all of it for the future. Waldenstrom's is a very indolent disease so anything bad would be quite a distance off, I'd just feel more comforted if I didn't have so many of the early symptoms. I keep hoping that when and if I ever show up with it, they'll have had the many years of research necessary to find a cure. My grandmother is doing great on treatment. Drove herself to her chemo and is now in whatever resting period it is they have after that initial treatment with things looking pretty good. She whines MUCH MUCH less than I do ;)
Thanx MO for responding
You're welcome Dek. And yes you are correct about transporting the cryo and thats part of what makes it so difficult to get an accurate test - plus the vial must be warmed etc.
I hope things work out soon. Its great that he has you to support him through this. Having someone even just to go to all the doctors with you helps so much - especially if you have brain fog and forget half of what the doctor says :).
Alagirl - glad that your grandmother is doing well. I have heard of Waldenstroms but I haven't read up on it.
And maybe the doctors can check the lesions to see if its cryo? I would imagine they did a skin biopsy already though.