Anyone (besides me) have an autoimmune disease?

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RJS81
Posts: 3
Joined: Wed Jun 25, 2014 4:36 am
Facebook Username: rob.sickinger
Location: Redding, CT

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

Postby RJS81 » Tue Aug 26, 2014 3:37 am

Yes - severe Ankylosing spondylitis and colitis; diagnosed seven years ago and treated successfully with Remicade infusions. I had to stop Remicade when I began Folfox in March, and now AS symptoms of back pain, loss of mobility, and fatigue are full blown. Onc at MSKCC believed Folfox would have alleviated AS symptoms, but hasn't worked out that way. On daily steroids (dexamethasone) and narcotics to get me through the end of chemo. Rheumatologist insistent that Remicade played no role in causing my appendiceal cancer, but it is an immunosuppressant that makes me question what role it played in the development of the cancer.
46 yo M
Stage IIIb Appendiceal Cancer
T4A N1 MO
Appendectomy 12/20/13
Dx - Appendiceal Cancer 12/26/13
Right Hemicolectomy 2/13/14
Folfox 3/14- present

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 » Tue Aug 26, 2014 8:36 am

Came across an article regarding gray hair...it stated that if a women starts graying before 30, they should be tested for variety of autoimmune disorders ...such as type 1 diabetes, RA, MS, colitis and hypothyroidism. These all track back to premature graying.

Does anyone fall within this situation?
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

jscho
Posts: 417
Joined: Sat Apr 18, 2009 10:01 am
Location: Toronto, Canada
Contact:

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

Postby jscho » Tue Aug 26, 2014 10:32 am

Hello Bev et al, I don't have any deep thoughts on autoimmune diseases. The immune system is incredibly complicated, and I suspect that like cancer there are a plethora of potential genetic and epigenetic causes even for well-classified diseases such as Type 1 diabetes. In my case, I'm sure all my autoimmune problems are related to a major dysfunction in either antigen-presenting molecules like the major histocompatibility complex or something fundamental to antigen recognition in the white blood cells. Evironmental triggers activate the problems.

I'm also convinced that the inflammation caused by my autoimmune problems led to my cancer.

Although I've been very fortunate to avoid a recurrence, I don't think having a "hyperactive" immune system helped much. I think I was probably lucky that the surgeon was able to remove almost all the cancer and either my own immune system, the remaining cancer cells were not able to take root, or the chemo took care of things. I suspect the hyperactive nature of autoimmune response is pretty specific and not helpful to eliminating pathogens.

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


Thanks for asking Bev. Fortunately my PSC hasn't caused any signficant changes to my liver over the last couple of years. I am hoping a fall into one of the subcategories of PSC in which liver enzymes normalize from time to time and fibrosis is delayed. Incredibly, I am about to reach the 5 year post-chemo mark. I still visit with my oncologist, but he may release me very soon. My health challenges are more related to side-effects of the sub-total colectomy I had done more than 2 years ago.

I've been following your saga and am pleased you and now your husband are doing well. Maybe it is the Vermont air?

Best wishes,
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

zx10guy
Posts: 232
Joined: Mon Jan 07, 2013 12:54 pm

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

Postby zx10guy » Mon Sep 01, 2014 12:31 am

Just to provide another data point, I have both Reynauds, eczema, and alopecia areata. The alopecia hit just before I was diagnosed. The alopecia and eczema went dormant during chemo. Not sure if the chemo was the major factor in the alopecia or the steroid shots I was still getting to reverse it. I just know my hair grew back and the dry patches (some times to the point of the areas cracking and bleeding) were gone during chemo. Since stopping chemo, the eczema and alopecia have returned.

jsw7302013
Posts: 10
Joined: Sun Dec 07, 2014 3:14 pm

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

Postby jsw7302013 » Mon Dec 08, 2014 7:32 pm

I have RA & fibromyalgia. Hope your theory holds up to keep recurrence away!!
Last edited by jsw7302013 on Tue Dec 09, 2014 7:10 pm, edited 1 time in total.
60 year old female
Dx: signet ring cell tumor in cecum, stage IIb,
no lymph involvement, Lynch negative
no perineural invasion, microsatellite instabilitiy
right hemicolectomy with resection 8/13
no follow up treatment

User avatar
dianetavegia
Posts: 2724
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

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

Postby dianetavegia » Tue Dec 09, 2014 3:57 pm

My aunt has Sjogren's Syndrome, Hashimoto's and Scleroderma and she's had thyroid cancer but the Sjogren's will kill her long before anything else. She gets meningitis, pneumonia several times a year.

My mother and her brother have no autoimmune conditions. My aunt was unable to carry a baby to term except for one born with no skull.

My husband's family is full of autoimmune diseases. Asthma. R/A. MS. Skin conditions galore. None of them have had cancer (other than basal cell).
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

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

Postby lpas » Tue Dec 09, 2014 4:39 pm

This is such an interesting question and one that I've actually thought a lot about over the past few weeks since my diagnosis.

In 2007, shortly after getting married, I consulted a doctor about some fertility issues and learned that I had both endometriosis and anti-ovarian antibodies. Several years later, following a number of early miscarriages, I learned that my natural killer cells were abnormally elevated and were attacking and killing off the embryos in my womb each time I conceived (a likely result of the endometriosis, I was told). Starting in 2009, I was prescribed a regimen of steroids and IVIG to "normalize" my NK cell levels and allow me to carry a pregnancy to term. During two successive pregnancies I followed this protocol, while also taking Lovenox to control anti-phospholipid antibodies (yet another auto-immune problem). In November--ten months after giving birth to my second healthy child--I was diagnosed with colon cancer. The doctor who performed my colonoscopy commented that he believes my tumor has probably been growing for at least 5 years.

Did the combination of IVIG and the steroids suppress my body's natural cancer response in a way that allowed the tumor to grow uncontrolled? I guess I'll never know but it's certainly a question that nags at the back of my mind. Maybe I'll get lucky and find that my unsuppressed immune system does a better-than-average job of fighting off progression and spread. I guess one can hope. Would love to learn more about any research on cancer and auto-immune disease that folks have come across.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

jens22
Posts: 1012
Joined: Wed Jun 09, 2010 9:26 am
Facebook Username: jspirio
Location: Long Island, NY

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

Postby jens22 » Wed Dec 10, 2014 8:59 am

SOmetimes I wonder which came first the Auto Immune or the Chemo that caused the Auto Immune.
I've got Grave's Disease and New Possible Raynauds. My Children who don't have Colon Cancer have a Collection of their own. IGA nephropathy, Ulcertive Colitis, Eczema. It's an Auto Immune kind of world.
Colonoscopy 3/10 for ? hemmorrhoid.
Diag Colon Cancer 3 days later
Colon Ressection 3/30/10
Stage 3B 5/14 Nodes positive.
Power Port and 7 months of Chemo
Port removed 11/11
8 negative Cat Scans..... 10 years cancer free and Discharged from Sloane Kett!!
Diag age 47 , now 57 Mom of 3 boys.

mymom
Posts: 1288
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

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

Postby mymom » Wed Dec 10, 2014 7:31 pm

My mother has Fibromyalgia.

My husband has Reynauds and he has had several large polyps.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED


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