Anyone (besides me) have an autoimmune disease?

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Bev G
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Location: Quechee, VT

Anyone (besides me) have an autoimmune disease?

Postby Bev G » Sun Aug 24, 2014 4:32 pm

Hi all,

I'm working on a theory I mentioned briefly a couple of weeks ago, so here's my question for anyone willing to answer. Does ANYONE on here have any one (or more) of the autoimmune diseases?

-type 1 diabetes (NOT type 2)
-rheumatoid arthritis
-Hashimoto's thyroiditis
-Lupus
-Reynauds syndrome
(there are about 80 diseases accepted to be autoimmune, and often if a person has one, they have another as well...I have type 1 diabetes and Hashimoto's thyroiditis [complete thyroid failure])

Diabetes (type 1) is present in about 1% of the population. Well, guess what? I've been on the board almost 5 years and as far as I know, we have never had another person with type 1 diabetes.By the % of people with type 1 diabetes in the general population, we certainly should have. Nor can I specifically remember anyone with one of the more common autoimmune diseases. This fact is statistically improbable, though not impossible.
Crohn's is sometimes autoimmune, but often not.

I have done a search of the literature and find nothing related to cancer in people with type 1 diabetes, which I think is a little weird as there is so much work being done now with immunotherapy and cancer. Specifically I find it very strange that I had 2 of 22 "positive" nodes but both had burned themselves out before I ever got any treatment (i.e. did my hyperactive immune system get to them and crush them before I ever got chemo?) My primary tumor was 8-10 years old and my met 5-6 years old according to my surgeons. There was no nodal involvement with my liver met (miracle--or autoimmunity {miracle in and of itself])

It makes me wonder if one of the auto-antibodies in my blood, and the blood of others with a strong history of auto-immune disease might not be a possibility for dealing, in some way, with cancer biology. One of my best friends, a doc, used to joke with me: Well Bev, at least you'll never get cancer,when we were talking about my crazy auto-immunity when my thyroids failed (I also have Reynauds). He said a cancer cell "would never stand a chance in my body" (Ha Ha)...butt, I'm wondering if this is something that should be looked into a bit more. If anyone wants to share any of their auto-immune history, I'd appreciate it. I'm going to speak with my onc about us doing some looking into this.

Thanks, all,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

justin case
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Location: Katy, Texas

Re: Anyone (besides me) have an autoimmune disease?

Postby justin case » Sun Aug 24, 2014 5:26 pm

This is an interesting path to pursue. My wife has Sjorgren's disease and possibly rheumatoid arthritis, or no one really knows what she has, but it is autoimmune :roll: These are such hard anomaly's to pinpoint, they can be as menacing and deadly as cancer. There is no known cure for one's body attacking itself. I would be interested in your findings Bev, and will watch this thread with great interest.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

sbrainbolt
Posts: 146
Joined: Mon Oct 08, 2012 1:01 pm
Location: Houston, TX

Re: Anyone (besides me) have an autoimmune disease?

Postby sbrainbolt » Sun Aug 24, 2014 5:37 pm

Hoshimoto thyroiditis here.
DX 1/12 50 yrs
LAR 2/12 CR 3A T1N1M0
chemo 3/12- 9/10/12 FOLFOX, issues with platelet counts every 4th treatment
CEA normal
CT 3/15 stable lung nods since 1/2012 NED.
SBO kinked small bowel 10/13 - LAPRO surgery to fix
yrly scans now
09/25/2017 - Graduated to the Survivorship Clinic at MDA! Cured!!!

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singingholly
Posts: 1133
Joined: Thu Feb 27, 2014 3:37 am
Location: Northern Italy

Re: Anyone (besides me) have an autoimmune disease?

Postby singingholly » Sun Aug 24, 2014 5:43 pm

I have Hashimoto. About my primary tumor and following mets I can say that everytime they were resected they were necrotic in large part, chemo or not chemo. Who knows...?
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Anyone (besides me) have an autoimmune disease?

Postby justin case » Sun Aug 24, 2014 5:47 pm

justin case wrote:This is an interesting path to pursue. My wife has Sjorgren's disease and possibly rheumatoid arthritis, or no one really knows what she has, but it is autoimmune :roll: These are such hard anomaly's to pinpoint, they can be as menacing and deadly as cancer. There is no known cure for one's body attacking itself. I would be interested in your findings Bev, and will watch this thread with great interest.
Regards,
Michael

I hate quoting me, but my wife has been given Methotrexate to combat it, a chemo drug.
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

smudgesicle
Posts: 125
Joined: Fri Mar 07, 2014 3:23 am
Facebook Username: prue.robson
Location: Australia

Re: Anyone (besides me) have an autoimmune disease?

Postby smudgesicle » Sun Aug 24, 2014 6:06 pm

I have Hashimotos and am possibly celiac (scope was inconclusive but I had already given up gluten long before it).
dx May '13 @ 29
RC T2N1bM0, Stage IIIA
7/13 chemoradiation
9/13 ULAR (pCR) & right hemi due to large "precancerous" appendiceal tumour, temp. ileo
11/13-5/14 5FU, 24 rounds
1/14 SBO & takedown
8/14 NED
9/14 perm. colostomy

Coppercent
Posts: 262
Joined: Thu Feb 23, 2012 4:00 pm

Re: Anyone (besides me) have an autoimmune disease?

Postby Coppercent » Sun Aug 24, 2014 6:16 pm

I have sarcoidosis - Lofgren's Syndrome. It has made my cancer follow up more challenging since the sarcoidosis shows up like cancer on my CT / PET scans. I have sarcoids on my lungs so I had to have all of the spots biopsied since they could have been a mixture of sarcoids and cancer. I had sarcoids show up along side the cancer in my pathology report from my abdominal surgeries. Positive about me being on 5FU is that it cleared up my sarcoidosis blotches on my skin. Sadly when I stopped 5FU the blotches came back but not as severe.
07/15/11 Stage III Rectal, 08/11 - 09/11 Chemo/rad 11/11 LAR - Whole rectum gone, ostomy, hysterectomy
01/12 Port placed, 01/12 thru 06/12 Folfox, Xelox 10/03/12 Reversal, Clear scan
And then the story continues.
Currently, remission round two!

kiwiinoz
Posts: 1156
Joined: Thu Jan 03, 2013 11:44 pm

Re: Anyone (besides me) have an autoimmune disease?

Postby kiwiinoz » Sun Aug 24, 2014 7:04 pm

I have an autoimmune skin condition called Psoriasis. This is where the cells see the skin as an enemy and attack it causing increased new cellular growth with externally is quite unsightly in raised red rashes which flake badly and bleed if they get too dry. I was taking methotrexate for a number of years, which I then changed to T cell focusing immune suppressants, which according to my oncologist did not cause my cancer but were almost certainly the reason it metastasized.

I think that the body is a many faceted beast and I find it very interesting that chemo stopped the psoriasis in its tracks, and with a few lifestyle changes I have made since dx that whilst the psoriasis has returned it is nowhere near as severe as it was pre dx.
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: Anyone (besides me) have an autoimmune disease?

Postby mstults » Sun Aug 24, 2014 7:11 pm

Hashimotos
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Anyone (besides me) have an autoimmune disease?

Postby justin case » Sun Aug 24, 2014 8:22 pm

kiwiinoz wrote:I have an autoimmune skin condition called Psoriasis. This is where the cells see the skin as an enemy and attack it causing increased new cellular growth with externally is quite unsightly in raised red rashes which flake badly and bleed if they get too dry. I was taking methotrexate for a number of years, which I then changed to T cell focusing immune suppressants, which according to my oncologist did not cause my cancer but were almost certainly the reason it metastasized.

I think that the body is a many faceted beast and I find it very interesting that chemo stopped the psoriasis in its tracks, and with a few lifestyle changes I have made since dx that whilst the psoriasis has returned it is nowhere near as severe as it was pre dx.

Hi my friend,
Yea with my wife it's the same thing, only different. Her doctor says Methotrexate can cause cancer. She also has to take a medicine designed to keep malaria at bay.
I'm going to go eat some Cheerios.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Danieljt
Posts: 309
Joined: Sun Aug 10, 2014 10:32 pm

Re: Anyone (besides me) have an autoimmune disease?

Postby Danieljt » Sun Aug 24, 2014 8:40 pm

My 36 yr old son has complete thyroid failure. His dr said his lab was the highest he's seen in his 30 years of being a dr. He put him on synthroid n he seems to be ok. He also has reactive arthritis and has only had one flair up since diagnosis. I worry about him. We live in a small rural area and we have good drs but maybe he needs to see a specialist. I am lynch negative but my 42 yr son is getting colonoscopy next week. Wish we were more up on things the last few years, but I'll make damn sure they get checked. I don't no if this is of any help but I'm just rambling. Good luck!
70 male stage 3b cc
Dx 5/9/14
Resection 7/1/14
dx 9/14
65 yr wife DLCl
Sct 3/21/19 Ned last 8 mo.

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: Anyone (besides me) have an autoimmune disease?

Postby Guinevere » Sun Aug 24, 2014 9:18 pm

I had an enlarged thyroid most of my adult life and was diagnosed in 1986 with Chronic Fatigue Immune Deficiency Syndrome (CFIDS). I first got sick in July 1985 and was finally diagnosed the following April. Funny, I just realized I got my cancer diagnosis in April. Hmm... At any rate, more targeted tests on my thyroid that was on the good side of the borderline of having Grave's Disease. Every CT shows nodules but, I guess, nothing about them is causing alarm. I still deal with the enlarged lymph nodes, dizziness and fatigue associated with the CFIDS.

I'm really interested in reading what others say as well as any conclusions that might be made.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

jscho
Posts: 417
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Location: Toronto, Canada
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Re: Anyone (besides me) have an autoimmune disease?

Postby jscho » Sun Aug 24, 2014 9:41 pm

I have type 1 diabetes, primary sclerosing chlolangitis, Graves disease and chron's disease. All are considered autoimmune diseases.

Jeremy
Colon cancer dx Feb. 24, 2009, T3/N2/M0
Right Hemicolectomy Feb. 26, 2009
Stage 3C: 4/19 positive nodes
High grade adenocarcinoma with tumor budding
FOLFOX6 April 15 - Oct. 1, 2009
Elective sub-total colectomy July 3, 2012 due to 2 DALMs
Currently NED

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: Anyone (besides me) have an autoimmune disease?

Postby JDinNC » Sun Aug 24, 2014 10:06 pm

Since completing chemo, I've developed a rash that started out small but has spread out in a circle pattern with a line of redness with irritation leaving behind dry flaky skin. There's a new area that developed this past week. My doctor has given me a cream which has not helped at all. Any other scrapes or cuts all heal well but this rash has not heal since discovering it in May.
I don't know if this has anything to do with my autoimmune.
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Anyone (besides me) have an autoimmune disease?

Postby Bev G » Sun Aug 24, 2014 10:19 pm

jscho wrote:I have type 1 diabetes, primary sclerosing chlolangitis, Graves disease and chron's disease. All are considered autoimmune diseases.

Jeremy


Hi Jeremy!

Geez, it's GREAT to see you, it's been so long. Yes, of course I knew you had type 1 diabetes, but forgot. Do you know of anyone besides you and me? Have you EVER had a recurrence since you were diagnosed. SInce you are one of the true, actual scientists on the board do you have any thoughts about this? The possibility of some benefit of a hyperactive autoimmune system with regard to cancer control.

It is obviously atypical that I never have had a recurrence since diagnosis, although of course the oligometastatic disease surely helped with that, once the liver tumor was out. I would love to hear your thoughts, if any, about this.

We sure seem to have a lot of Hashimoto's around here. Looks like the reported incidence of it is 0.3-1.5/1000, and I have no idea how to translate that information to what our folks have, but seems like there's a lot of it. Butt, where are all the folks with type 1 diabetes? Perhaps there are the right number of them with cancer, and just aren't on this board.

How is your liver doing, if you feel like saying? I hope you're very well.

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now


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