auto immune disorder after chemo

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susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

auto immune disorder after chemo

Postby susie0915 » Sun Dec 03, 2017 5:21 pm

I am now being monitored for an auto immune disorder because ct scan after I finished chemo showed interstitial lung disease. I had Raynaud's before cancer dx.
So now I see a pulmonologist every six months and have pulmonary tests. And she has referred me to a rheumatologist, even though they're not sure what I have. I had many blood tests for rheumatoid arthritis, sjogren's, scleroderma, and lupus. So far only the lung scarring and inflammation, and has remained stable. I just wonder if the chemo caused it or made it worse if I had some scarring and inflammation before. My first ct scan never really mentioned it. I asked the pulmonologist and she thinks it was there and happen to find it because of all the scans. Especially because I had raynauds prior. Not that it matters, all we can do is monitor and try and manage any symptoms. So far, I don't have breathing issues or any other symptoms other than the raynauds. Hopefully, it will not get worse. Anyone else of issues with auto immune disorders after chemo?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: auto immune disorder after chemo

Postby Lee » Sun Dec 03, 2017 5:37 pm

Yes, I believe I do. I was diagnosed over a year ago with psoriasis. PCP thought that was odd, most people are diagnosed with it in there 20's sometimes early 30's. I was pushing 60. There are a few other people on this board who were also diagnosed with psoriasis later in life. We have 3 things in common. We were diagnosed with this cancer early in life, we were treated aggressively, and would get psoriasis later in life.

When I was finished with my chemo, my Onc told me to always get the flu shot. Assume your immune system is compromised as a result of this chemo.

She also told me to get annual mammogram. Sometime females who get this cancer were diagnosed with breast cancer a few years later. They are members of T & A club.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: auto immune disorder after chemo

Postby susie0915 » Sun Dec 03, 2017 5:49 pm

Lee wrote:Yes, I believe I do. I was diagnosed over a year ago with psoriasis. PCP thought that was odd, most people are diagnosed with it in there 20's sometimes early 30's. I was pushing 60. There are a few other people on this board who were also diagnosed with psoriasis later in life. We have 3 things in common. We were diagnosed with this cancer early in life, we were treated aggressively, and would get psoriasis later in life.

When I was finished with my chemo, my Onc told me to always get the flu shot. Assume your immune system is compromised as a result of this chemo.

She also told me to get annual mammogram. Sometime females who get this cancer were diagnosed with breast cancer a few years later. They are members of T & A club.

Good luck,

Lee

Yes I do get flu shots, and I also got both pneumonia vaccines. I also always get my mammograms and Pap smears every year. I'm just hoping the lung scarring and inflammation doesn't progress or I get symptoms of lupus,sjogrens,rheumatoid arthritis, or scleroderma. One of my blood tests did come back high which can or cannot be indicative of systemic scleroderma. I don't have symptoms now, all I can do is keep getting checkups and tests to monitor. Most people just don't realize all the issues we can deal with after treatment is over, even if we're cancer free. Not that I'm complaining, it does beat the alternative.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Ron50
Posts: 628
Joined: Fri Feb 10, 2006 7:04 pm

Re: auto immune disorder after chemo

Postby Ron50 » Mon Dec 04, 2017 6:42 am

Since cancer and chemo I have developed a nasty range of auto- immune problems. I guess the worst is auto- immune nephrotic syndrome of the kidneys. Without treatment I lose up to 8 grams of protein a day thru my urine. I take cyclosporine twice a day and it has reduced my protein loss. I have what has been described as seronegative polyarthritis. They have not tested thoroughly but I think it is more likely to be psoriatic arthritis than rheumatoid. I have extensive damage to my fingernails and the most joint damage is nearest my fingertips . I wake up with red eyes every morning and in the past twelve months on two occasions my legs and lungs have half filled with fluid. My nephrologist thought at first it was congestive heart failure. But if I go on fluid restrictions and double diuretics for a few days the problem resolves. My doc said that it resolves far too quickly for chf. I have had three kidney biopsies but none of them relates to known kidney diseases. My neph also believes I have auto - immune hepatitis. My liver functions are always in the red but if he puts me on a short course of prednisone along with the cyclosporine everything returns to the black. That is the standard treatment for ai hep. My heart and blood pressure vary wildly . I have around 11000 premature ectopics a day. They have no idea what is causing them and my blood pressure variations . Once again my neph thinks they are most likely auto - immune possibly from the arthritis . He will not say it in writing but he is pretty sure most of my problems are chemo related and time related . In Jan I hit the end or year twenty of survival. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

hawkowl
Posts: 64
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: auto immune disorder after chemo

Postby hawkowl » Mon Dec 04, 2017 6:54 am

I have an autoimmune disorder (psoriatic arthritis and sponyloarthropathy with HLA B27 positivity). It actually improved for a bit after chemo but I did develop neuropathy and dysautonomia.

My arthritis and psoriasis are back now. I actually wonder if the played a role in my cancer as i had a bit of IBD and was also on immunosuppressive therapy for my psoriatic arthritis (i used Humira)
Dx 12/2014 T3N2MX (iliac nodes) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7
10/2017 CEA remains in normal range (1.4), scans stable.

Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: auto immune disorder after chemo

Postby susie0915 » Mon Dec 04, 2017 8:31 am

It just makes me wonder if I would be dealing with this if I didn't have chemo. I do have mild neuropathy in my feet along with the raynauds. Like I said others really don't realize all the side effects after chemo is finished and cancer is gone. Good luck to all of you, hopefully we can get some relief from these issues. Seems like some appear long after chemo is completed.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

SweetC80
Posts: 72
Joined: Fri Sep 01, 2017 1:28 pm

Re: auto immune disorder after chemo

Postby SweetC80 » Mon Dec 04, 2017 9:05 am

It is my mother who has rectal cancer, but both she and I have autoimmune diseases. My first one presented itself after a serious medical condition. My endocrinologist at the time told me sometimes you can have a dormant autoimmune disease and it takes a "traumatic" event in your body to almost activate it like another medical condition. I think AI disorders are still unknown and think there are many reasons that would cause an autimmune disease to rear it's ugly head, and it might be your body battling cancer versus the chemo.
Mom's history
68yo at diagnoses
12/16 Stage IIIb Rectal Ca CEA 1.2
1/17-2/17 Chemoradiation CEA 4.4
5/17 Entire Colon, Rectum and Anus removed Perm Ileostomy Bag
7/17 FOLFOX
9/17 Stage IVb 9cm Liver Met and suspicious 7mm Lung Nodule CEA 197
9/17 Irincotecan CEA 160
10/17 Confirmed KRAS Positive CEA 210
11/17 Met growths, Liver 10cm and Lung 8mm CEA 425
12/17 Onco Apt to discuss options after treatment for abscess. Mom's not giving up

User avatar
susie0915
Posts: 550
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: auto immune disorder after chemo

Postby susie0915 » Mon Dec 04, 2017 5:37 pm

Lee wrote:Yes, I believe I do. I was diagnosed over a year ago with psoriasis. PCP thought that was odd, most people are diagnosed with it in there 20's sometimes early 30's. I was pushing 60. There are a few other people on this board who were also diagnosed with psoriasis later in life. We have 3 things in common. We were diagnosed with this cancer early in life, we were treated aggressively, and would get psoriasis later in life.

When I was finished with my chemo, my Onc told me to always get the flu shot. Assume your immune system is compromised as a result of this chemo.

She also told me to get annual mammogram. Sometime females who get this cancer were diagnosed with breast cancer a few years later. They are members of T & A club.

Good luck,

Lee

Have you been able to get meds to help with the psoriasis?
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT
11/17 CEA<.5

Lee
Posts: 5293
Joined: Sun Apr 16, 2006 4:09 pm

Re: auto immune disorder after chemo

Postby Lee » Mon Dec 04, 2017 7:31 pm

susie0915 wrote:Have you been able to get meds to help with the psoriasis?


Yes I was. I had already decided against the various pills you see advertised on TV. The side effects scare me. Worst than the diagnoses. I am VERY fortunate, I use a cream that mostly does the trick. PCP told only about 10% of people with psoriasis benefit from the cream, I just happen to be one than (thank you dear Lord).

It is interesting, sweating brings it on. Thus in the summer months (Phoenix, AZ), I use the cream A LOT. During the winter months, not so much. It started in the back of my legs (again, not normal for psoriasis), it got pretty big in one leg, butt that cream really cleared it up. Now I carry a small towel when ever we eat out so that the back of my legs to not sweat when wearing shorts.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!


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