Oncoblot

[gmpurple]

I need to dump everything in my head into this post because it needs to go somewhere.

I was getting frustrated with my rheumatologist and primary doctor not believing Sjogrens was a problem for me so I sought out an alternative medicine doctor in my area.  They did what's called an oncoblot blood test, a non-FDA approved test for cancer cells.  I just found out I tested positive for blood cell cancer cells.  This means I could have lymphoma or leukemia, but it could mean that i just have the cancer cells that may or may not develop into lymphoma or leukemia some day.  I'm now waiting for insurance approval to get PET, CT and bone tests.  I have had some swollen lymph nodes in my neck but a recent neck CT shows no abnormalities.  And all of my bloodwork has been normal except for a positive SSA and now this oncoblot.  I'm freaking out that I've had lymphoma for at least the last 2 years since my symptoms started and it's just never shown up.  But then I tell myself that of course I would be at risk for lymphoma because I have Sjogrens so it's not abnormal that the oncoblot came back positive.  It doesn't help that I feel worse than I ever have right now.  Extreme pain, fatigue, insomnia, cold, no appetite.  I keep trying to tell myself it's a Sjogren's flare like I've had before.  I'm just scared and needed to type this all out. I'm thankful I have a place to unload all of this.

[irish]

Wow, that is a load for you to carry. I am glad that you can unload here. You will get a lot of info feedback from people. I had never heard of that test but will be interested to see how all your testing turns out. Some of the cancers that we get are extremely slow growing so this may not have showed up in the past year.

I hope that you can maintain your cool and not worry yourself to death. I would bet that there will be a lot of testing done to rule out this and that. Yes, we are at risk for lymphoma when we have Sjogrens but all the other autoimmune diseases are at risk also.

If you do a search on lymphoma in the USA in the past couple of years you will see that there is a fairly large increase in leukemia and lymphoma. Also do a search on the chemicals used in this country especially the Roundup that is used on crops and all over in this country. We always thought it was so safe and it has turned out that it is expected to cause these 2 diseases. Sooo, we are all at risk. Life is more of a crap shoot every day.

I hope that your testing goes well and your doctors are cooperative. Please let us know how things are going for you and much prayers for you. Irish

[bluegardenia]

gmpurple im sorry for you!i understand your worries, i would be scared! but u are not sure and i hope that test is wrong.
and i would like to know how many about those who post here have developed lymphoma

[Deb 27]

Sorry to hear about the test results, blue gardenia. Bless your heart, those test results would upset any of us. Why exactly were you frustrated with your main stream docs?? Did they not put you on some meds to help you feel better?? Have you consulted a Hematologist?  They specialize in blood cancers like leukemia/lymphoma. They will do main stream tests that are FDA approved. While I am all for a lot of alternative medicine, when it comes to cancer, I would be leery of a non FDA approved test.  It may or may not be reliable, so try to hang in there and not worry too much until a main stream tests says you have it. Keep us posted and I hope all the other tests come back negative.

[bluegardenia]

deb, i did not do the test, gmpurple did it.
i would like to know just how many here developped lymphoma

[gmpurple]

I have been frustrated with main stream docs because the Rheumatologist and General Practitioner are both of the opinion that Sjogrens should not cause severe symptoms.  My GP said I'm probably just under stress.  I'm trying to get an appointment with Hopkins Sjogrens Center to see if they can offer advice, but they don't want to give me an appointment because they said it looks like I'm getting adequate care in my home town.  It's so frustrating.

I was on Hydroxychloroquine for 2 months then stopped to see if it was causing side effects.  It doesn't look like it was so I am going to start that back up today, but the name brand Plaquenil. 

I too am leery of non-FDA approved tests, but now that I have these positive results I think I have to move forward with the scans to hopefully rule out lymphoma.  I will keep you updated.  Thanks for your responses.

[Carolina]

Hi, gmpurple,

Immune Disorders can be fairly straightforward and uncomplicated.  Many people with Sjogren's do not have further complications.  Some people don't even KNOW they have a problem until they are part of a study (research in Japan).

BUT, there are many exceptions, and you will meet us here in all our glory.

However, the treatment for most Immune Disorders is still at a very primitive stage (except some bone marrow transplants in very young children with 'some' Immune Disorders can cure them).   For most of us, most of the time, we treat the symptoms.  Even the tests we have available may not reveal what our problems are.  They just stay mysteries.

Plaquenil is first line serious treatment for Sjogren's.  Unless you cannot tolerate it physically, I highly recommend that you try it for an extended period.

Those of us with complex Immune Disorders, can be a great frustration to the general population of doctors.  I see doctors connected with Duke University Medical Center, doctors who want to learn and to bear with me.

I am not convinced the Oncoblot test is always accurate.  There is almost NO reference to it in published research.  Only companies selling it seem to have much to say.

Relax (easy to say), go through a reasonable process of working with doctors and medications.....

And get a referral to Hopkins from a reputable doctor.  Most special centers don't take new patients in on their own referral I've found.

Keep us posted,  Elaine

[Nomad]

So sorry to hear of this conflicting news. It could be a false positive. Or it might be something you need to know and a blessing to know it.

Off and on I listen to (or read) what might be considered alternative literature on cancer prevention and treatment and this test has been casually mentioned.

Perhaps it is something that is indicating an extremely early development.

Additionally, it could be a "mess up," as I think people with immune disorders are known to mess up test results. For example, many many years ago I had a positive syphilis test that was WRONG/BOGUS. This was before I was diagnosed with Lupus. I found out subsequently both things...that people with autoimmune disorders, particularly lupus, often come out positive period AND that I had lupus. The funny thing is that I offered to take the test at my university to help their medical school with some project they were working on and almost passed out when it came back positive. Then, I had to take other tests etc. and they were all negative. The doctor said he couldn't understand why that had happened. Found out later...it almost ALWAYS HAPPENS...that if you have lupus you will almost always mess up that test. The point being, I realize that having an autoimmune illness can mess up test results.

Others might think I'm goofy, but I think a "clean," diet truly can help with immune issues...particularly cancer. Avoid sugar at all costs. Drink lots of good water. Avoid junk food. Don't touch soda. Eat tons of vegetables and some fruit daily. Cut back on meat and bread.

Wishing you well. Please keep us posted.

[gmpurple]

This is a follow-up to my original post.  To recap I went to an alternative medicine doctor who did an "Oncoblot" test for cancer proteins which came back positive for Lymphoma or Leukemia.  My insurance company denied all PET/CT and bone scans.  So I went back to my GP who told me not be worried about lymphoma at all, that I have no suspicious lymph nodes and that none of my blood work is showing signs of lymphoma.  But to be safe she referred me to an oncologist who specializes in lymphoma.  He did further extensive blood work and examined me and echoed exactly what my GP said.  So basically I got a clean bill of health as far as cancer goes!

I also went to Johns Hopkins Sjogrens Center where they did a ton more tests.  The doctor I saw said that although I don?t have typical symptoms of Sjogren?s, all of the blood work they did came back showing clear evidence of Sjogren?s.  He made a few suggestions for tweaking my treatment.  He said he's not surprised that the cancer blood test was positive for lymphoma proteins, apparently that's not abnormal for a Sjogren's patient.

So this is all good news.  I wanted to make sure I posted the outcome in case anyone else out there ever comes across this test.  I don't think it should be used as a diagnostic tool, and I regret ever getting it done.  Thanks for all your support.

[nannysbaby]

So glad to hear you are okay, gm.