Re: RESEARCH - ACR: no cancer risk with TNF-inhibitors for RA

[Guest guest]

I have always been very fearful about lymphoma b/c of the RA link, but I think

my sister's case is interesting considering these research results.  Our family

is rife with autoimmune diseases.  I have RA and she has Hodgkin's.  She's never

taken an antiTNF obviously, but whatever these genes are, our family has a

healthy (ha!) share.  The genes seem to leave a person vulnerable to autoimmune

dysfuction, perhaps from B cell dysregulation.  Some environmental insult might

set off the process and you end up with one (or more, yippee!) of these

conditions.  Maybe taking the antiTNF doesn't *cause* the cancer per se, but you

are more at risk because of the underlying problems in cell apatosis (or

whatever that name is for the mechanism that causes the death of unhealthy

cells).  Also, I was 27 when I had my first bout with RA.  I was super sick too,

much worse than any subsequent flares.  She was diagnosed with the cancer just

before xmas and turned

27 on 1/4.  My uncle was also treated for a lung lymphoma and the RA genes are

from his side of the family.  Weird, isn't it??Just some random thoughts, Kate F

[Guest guest]

Kate, I'm sorry that you have that family history hanging over you.

Here's something I find fascinating about the RA/lymphoma connection:

there are several published case reports of RA patients on MTX who

developed lymphoma, but, when the MTX was withdrawn, the lymphoma

regressed without treatment.

Not an MD

On Wed, Jan 14, 2009 at 10:31 AM, Fair <kalfoley@...> wrote:

> I have always been very fearful about lymphoma b/c of the RA link, but I

> think my sister's case is interesting considering these research results.

> Our family is rife with autoimmune diseases. I have RA and she has

> Hodgkin's. She's never taken an antiTNF obviously, but whatever these genes

> are, our family has a healthy (ha!) share. The genes seem to leave a person

> vulnerable to autoimmune dysfuction, perhaps from B cell dysregulation.

> Some environmental insult might set off the process and you end up with one

> (or more, yippee!) of these conditions. Maybe taking the antiTNF doesn't

> *cause* the cancer per se, but you are more at risk because of the

> underlying problems in cell apatosis (or whatever that name is for the

> mechanism that causes the death of unhealthy cells). Also, I was 27 when I

> had my first bout with RA. I was super sick too, much worse than any

> subsequent flares. She was diagnosed with the cancer just before xmas and

> turned

> 27 on 1/4. My uncle was also treated for a lung lymphoma and the RA genes

> are from his side of the family. Weird, isn't it??Just some random

> thoughts, Kate F

[Guest guest]

That is really wild, thanks for mentioning that, (and for the empathy in

regard to our sketchy genetics!). Isn't it intriguing that MTX is both a cancer

and RA drug? I don't know exactly how it works, but MTX modifies cell division?

There has got to be a potential nobel prize for medicine if someone could crack

the case. Certainly I think my family example supports the contention that

funky genetics leave us vulnerable to immune system disorders and which ones you

get might depend on how the genes shuffle themselves. I can't let it go that I

was first sick with RA at the exact age my sis got Hodgkins. My mother said she

was racking her brain about possible exposures when she was pregnant, but I

said, listen, clearly it's our genes. Yes, Dad was cute in college, but you

picked a dude with a family history too similar to yours. My Mom has MS, her

mother had Raynauds, both had Hashi's. Dad's mom had RA, her mother had

pernicious anemia, both

had Hashi's. Yikes. The only wild card was that we grew up in central, MI

near a superfund site. I'm sure all those PCBs and PBBs etc don't help matters.

I need to update her blog, but she got her port yesterday and started ABVD chemo

today. She's a bit tired and sore, but feeling positive. I may have to

strangle our mother who is hovering over her and pretty much making me CRAZY,

but other than that things are fine. She cut her hair in a pixie cut in

anticipation for losing her hair in the next few days.

On a tangential note, on my women's health board, someone asked how we might

feel if our children brought home someone of another ethnic group that they were

dating. My response: THRILLED. With our crazy genetics, I hope my sons find

partners from the far corners of the globe and avoid N. Europe as much as

possible!

________________________________

From: <Rheumatoid.Arthritis.Support@...>

Sent: Thursday, January 15, 2009 8:46:34 PM

Subject: Re: [ ] RESEARCH - ACR: no cancer risk with TNF-inhibitors for

RA

Kate, I'm sorry that you have that family history hanging over you.

Here's something I find fascinating about the RA/lymphoma connection:

there are several published case reports of RA patients on MTX who

developed lymphoma, but, when the MTX was withdrawn, the lymphoma

regressed without treatment.

Not an MD

On Wed, Jan 14, 2009 at 10:31 AM, Fair <kalfoley (DOT) com> wrote:

> I have always been very fearful about lymphoma b/c of the RA link, but I

> think my sister's case is interesting considering these research results.

> Our family is rife with autoimmune diseases. I have RA and she has

> Hodgkin's. She's never taken an antiTNF obviously, but whatever these genes

> are, our family has a healthy (ha!) share. The genes seem to leave a person

> vulnerable to autoimmune dysfuction, perhaps from B cell dysregulation.

> Some environmental insult might set off the process and you end up with one

> (or more, yippee!) of these conditions. Maybe taking the antiTNF doesn't

> *cause* the cancer per se, but you are more at risk because of the

> underlying problems in cell apatosis (or whatever that name is for the

> mechanism that causes the death of unhealthy cells). Also, I was 27 when I

> had my first bout with RA. I was super sick too, much worse than any

> subsequent flares. She was diagnosed with the cancer just before xmas and

> turned

> 27 on 1/4. My uncle was also treated for a lung lymphoma and the RA genes

> are from his side of the family. Weird, isn't it??Just some random

> thoughts, Kate F

[Guest guest]

Hi, Kate. I hope all is going a well as possible with Bridget. I'm

sorry that you mother adds more stress to the situation.

MTX works in cancer due to its antifolate properties (preventing cell

proliferation), but, in RA, the mechanism is not completely

understood.

I do think genes are the prerequisite for being lucky enough to have

one of these diseases visited upon you. The other triggers are still a

mystery. There are some interesting associations with the Epstein-Barr

virus.

As for different ethnic groups, I'm Lithuanian, Irish, ish, and

German. I had three children with a 100% Japanese man. The boys seem

to have no problems, but my daughter (early 20s) has had shingles

twice already. I'm hoping that it doesn't mean anything, but I am

worried.

Not an MD

On Thu, Jan 15, 2009 at 9:09 PM, Fair <kalfoley@...> wrote:

> That is really wild, thanks for mentioning that, (and for the empathy

> in regard to our sketchy genetics!). Isn't it intriguing that MTX is both a

> cancer and RA drug? I don't know exactly how it works, but MTX modifies cell

> division? There has got to be a potential nobel prize for medicine if

> someone could crack the case. Certainly I think my family example supports

> the contention that funky genetics leave us vulnerable to immune system

> disorders and which ones you get might depend on how the genes shuffle

> themselves. I can't let it go that I was first sick with RA at the exact age

> my sis got Hodgkins. My mother said she was racking her brain about possible

> exposures when she was pregnant, but I said, listen, clearly it's our genes.

> Yes, Dad was cute in college, but you picked a dude with a family history

> too similar to yours. My Mom has MS, her mother had Raynauds, both had

> Hashi's. Dad's mom had RA, her mother had pernicious anemia, both

> had Hashi's. Yikes. The only wild card was that we grew up in central, MI

> near a superfund site. I'm sure all those PCBs and PBBs etc don't help

> matters.

>

> I need to update her blog, but she got her port yesterday and started ABVD

> chemo today. She's a bit tired and sore, but feeling positive. I may have to

> strangle our mother who is hovering over her and pretty much making me

> CRAZY, but other than that things are fine. She cut her hair in a pixie cut

> in anticipation for losing her hair in the next few days.

>

> On a tangential note, on my women's health board, someone asked how we might

> feel if our children brought home someone of another ethnic group that they

> were dating. My response: THRILLED. With our crazy genetics, I hope my sons

> find partners from the far corners of the globe and avoid N. Europe as much

> as possible!

[Guest guest]

Hi , please keep us updated on your daughter.  I can't imagine how worried

you must be sometimes waiting for the other shoe to drop, as you wonder whether

the shingles are a sign of an ongoing immune system problem.  As a small child

did she have " wild " chickenpox or did she get the varicella vaccine?  Is there

any relationship between shingles and whether a pt had the wild disease versus

innoculation?  Is there benefit to her having the shingles vaccine?

I forgot to add that I had Bell's Palsy in college.  I always forget to mention

that colorful part of my medical history.  I don't know if that's a sign of

immune dysregulation at all.  It was *great* - I was interviewing for grad

school with half a face.  However now I'm wrinkling less on that side

I'm intrigued by the EBV issue.  I'm not sure what my titre might be, but the PA

I work with said that Bridget's was sky high.  You're right, I bet there's

something there.  I'm also interested in the evolution of the disease.  I read

that there was no archaeological evidence of it in Europe prior to Columbus and

I know someone posited perhaps it was brought back from the New World.  Then

again, so many women died in childbirth and life was much shorter, so lack of

evidence certainly doesn't mean it didn't exist.

Do you still think about what the " adaptive " role of these RA genes might be? 

We had exchanged articles last year about whether they confer some kind of TB

protection.  I like to think there might be some up side!

Strike 2 for our internal medicine doc who missed Bridget's cancer.  I had sent

my husband, , to her a few months back because he had lost a lot of weight

and I was worried.  She met with him briefly, did basic bloodwork to check his

TSH and r/o DMII.  He became hypothyroid in 2007 after he had that GBS-like

reaction to his flu shot.  I still felt uneasy, so I begged him to go see my

boss, an old fashioned FP doc.  He drew 's thyroid antiboides and they are

*huge*.  The cut off for each are around 20-30 and his are in the thousands. 

The doc thinks he either has a more complex endocrine problem than simple

Hashi's, or perhaps something rheumatic.  I was pretty upset and worried on

Fri.  He has to go off his Synthroid for 6 weeks and have a thyroid scan in

March.  It made me concerned too that he might have his own weirdo genes that

went to the boys.  I'm not sure if it might be Graves or something weird, but

I'll keep you posted.

________________________________

From: <Rheumatoid.Arthritis.Support@...>

Sent: Sunday, January 18, 2009 9:08:14 AM

Subject: Re: [ ] RESEARCH - ACR: no cancer risk with TNF-inhibitors for

RA

Hi, Kate. I hope all is going a well as possible with Bridget. I'm

sorry that you mother adds more stress to the situation.

MTX works in cancer due to its antifolate properties (preventing cell

proliferation) , but, in RA, the mechanism is not completely

understood.

I do think genes are the prerequisite for being lucky enough to have

one of these diseases visited upon you. The other triggers are still a

mystery. There are some interesting associations with the Epstein-Barr

virus.

As for different ethnic groups, I'm Lithuanian, Irish, ish, and

German. I had three children with a 100% Japanese man. The boys seem

to have no problems, but my daughter (early 20s) has had shingles

twice already. I'm hoping that it doesn't mean anything, but I am

worried.

Not an MD

On Thu, Jan 15, 2009 at 9:09 PM, Fair <kalfoley (DOT) com> wrote:

> That is really wild, thanks for mentioning that, (and for the empathy

> in regard to our sketchy genetics!). Isn't it intriguing that MTX is both a

> cancer and RA drug? I don't know exactly how it works, but MTX modifies cell

> division? There has got to be a potential nobel prize for medicine if

> someone could crack the case. Certainly I think my family example supports

> the contention that funky genetics leave us vulnerable to immune system

> disorders and which ones you get might depend on how the genes shuffle

> themselves. I can't let it go that I was first sick with RA at the exact age

> my sis got Hodgkins. My mother said she was racking her brain about possible

> exposures when she was pregnant, but I said, listen, clearly it's our genes.

> Yes, Dad was cute in college, but you picked a dude with a family history

> too similar to yours. My Mom has MS, her mother had Raynauds, both had

> Hashi's. Dad's mom had RA, her mother had pernicious anemia, both

> had Hashi's. Yikes. The only wild card was that we grew up in central, MI

> near a superfund site. I'm sure all those PCBs and PBBs etc don't help

> matters.

>

> I need to update her blog, but she got her port yesterday and started ABVD

> chemo today. She's a bit tired and sore, but feeling positive. I may have to

> strangle our mother who is hovering over her and pretty much making me

> CRAZY, but other than that things are fine. She cut her hair in a pixie cut

> in anticipation for losing her hair in the next few days.

>

> On a tangential note, on my women's health board, someone asked how we might

> feel if our children brought home someone of another ethnic group that they

> were dating. My response: THRILLED. With our crazy genetics, I hope my sons

> find partners from the far corners of the globe and avoid N. Europe as much

> as possible!

[Guest guest]

Kate,

Thanks. I'll let you know if there are any further developments with

my daughter. I hope not. I've given her strict instructions to let me

know ASAP if she thinks it's recurring. I've zeroed in on some

physicians nearby who do research along these lines who may be able to

help figure out what may be going on.

She did have chickenpox when she was seven - covered head to toe with

so darn many. I don't know if there is a relationship between having

been immunized and then later developing shingles. I do know of a

couple of neighborhood kids who were immunized but got the chickenpox

anyway. I'm not sure about giving her the shingles vaccine. That's

another question for the researchers.

Sorry about your Bell's palsy and the interviews! Horrible. Many

people get it who remain seemingly healthy, but I have read some

opinions that it might be, in some cases, part of an autoimmune

demyelination syndrome (like MS).

I'm still wondering about what the benefits of having RA, lupus, or

whatever could be! Maybe those with RA didn't succumb to TB because

their immune systems were on overdrive since they wouldn't have been

on immunosuppressants.

I've always wondered about Epstein-Barr. I had a really bad case of

mono in my senior year of high school. Lymph nodes the size of golf

balls. As a freshman in college, I had a terrible case of chickenpox.

I missed two weeks! I often wonder if those illnesses could have been

the beginning of my problems.

I'm giving the internist a strike three so that your family doesn't go

back to her. A few weeks before Christmas, my uncle was misdiagnosed

with shingles when it was really a staph infection. He almost lost his

life and only made it home a few days ago.

Sorry about . I hope it's nothing serious. Please do let me know

what his diagnosis is.

Try not to worry about the boys. The odds are in their favor.

Not an MD

On Mon, Jan 19, 2009 at 8:53 AM, Fair <kalfoley@...> wrote:

> Hi , please keep us updated on your daughter. I can't imagine how

> worried you must be sometimes waiting for the other shoe to drop, as you

> wonder whether the shingles are a sign of an ongoing immune system problem.

> As a small child did she have " wild " chickenpox or did she get the varicella

> vaccine? Is there any relationship between shingles and whether a pt had

> the wild disease versus innoculation? Is there benefit to her having the

> shingles vaccine?

>

> I forgot to add that I had Bell's Palsy in college. I always forget to

> mention that colorful part of my medical history. I don't know if that's a

> sign of immune dysregulation at all. It was *great* - I was interviewing

> for grad school with half a face. However now I'm wrinkling less on that

> side

>

> I'm intrigued by the EBV issue. I'm not sure what my titre might be, but

> the PA I work with said that Bridget's was sky high. You're right, I bet

> there's something there. I'm also interested in the evolution of the

> disease. I read that there was no archaeological evidence of it in Europe

> prior to Columbus and I know someone posited perhaps it was brought back

> from the New World. Then again, so many women died in childbirth and life

> was much shorter, so lack of evidence certainly doesn't mean it didn't

> exist.

>

> Do you still think about what the " adaptive " role of these RA genes might

> be? We had exchanged articles last year about whether they confer some kind

> of TB protection. I like to think there might be some up side!

>

> Strike 2 for our internal medicine doc who missed Bridget's cancer. I had

> sent my husband, , to her a few months back because he had lost a lot of

> weight and I was worried. She met with him briefly, did basic bloodwork to

> check his TSH and r/o DMII. He became hypothyroid in 2007 after he had that

> GBS-like reaction to his flu shot. I still felt uneasy, so I begged him to

> go see my boss, an old fashioned FP doc. He drew 's thyroid antiboides

> and they are *huge*. The cut off for each are around 20-30 and his are in

> the thousands. The doc thinks he either has a more complex endocrine

> problem than simple Hashi's, or perhaps something rheumatic. I was pretty

> upset and worried on Fri. He has to go off his Synthroid for 6 weeks and

> have a thyroid scan in March. It made me concerned too that he might have

> his own weirdo genes that went to the boys. I'm not sure if it might be

> Graves or something weird, but I'll keep you posted.