Dysautonomia, a new thing?

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KellyBelle
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Dysautonomia, a new thing?

Postby KellyBelle » Mon Nov 27, 2017 9:49 am

I’ve been gone for years... finally decided the cancer wasn’t going to kill me. It’s not.

The chemo is.

I have neuropathy in my autonomic nervous system. The autonomic nervous system controls everything we don’t have to think about: blood pressure, heart rate, swallowing, and so much more.

Has anybody else heard of this/have it?

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

sadysue
Posts: 974
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Dysautonomia, a new thing?

Postby sadysue » Mon Nov 27, 2017 11:15 am

So sorry for what you are experiencing. Chemo has unfortunately left a large, lasting footprint on many of us. I have neuropathy that affects several parts of my body but nothing like what you have - I've never heard of it. I wish you the best and hope you find relief and peace of mind.
Mary Ann
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

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KellyBelle
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Re: Dysautonomia, a new thing?

Postby KellyBelle » Mon Nov 27, 2017 12:02 pm

I stand up/I fall down. My blood pressure/heart rate are so low I have a hard time going to my mail box. I’m supposed to wear full compression garments 12 hours a day, but with menopause that’s not possible. Everything has to be high salt in addition to popping salt pills every few hours.

Astronauts returning from space have this. Not Mark Kelly; he’s going thru this plus a whole lot more.

But still :shock:
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

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susie0915
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Re: Dysautonomia, a new thing?

Postby susie0915 » Mon Nov 27, 2017 2:28 pm

I have never heard of this. Have you had this since you had treatment, or is it something that started long after chemo was completed? I didn't get neuropathy in my feet until about a month after I finished chemo. It has improved in my hands, but still have it in the feet. My niece had syncopy which caused her blood pressure to drop and she would basically collapse. She also had to take in a lot of sodium, eat high sodium foods. I think she was also put on a beta blocker or some type of pill to try and keep her blood pressure up. I'm so sorry you are going through this.
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

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KellyBelle
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Re: Dysautonomia, a new thing?

Postby KellyBelle » Tue Nov 28, 2017 6:46 am

This started eight years after chemo. But it sounds like your niece may have something similar called POTS, which is another form of Dysautonomia. Would love to hear more!
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

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susie0915
Posts: 551
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Dysautonomia, a new thing?

Postby susie0915 » Tue Nov 28, 2017 9:11 am

KellyBelle wrote:This started eight years after chemo. But it sounds like your niece may have something similar called POTS, which is another form of Dysautonomia. Would love to hear more!


She started around 13 and it lasted through high school. It was quite debilitating plus affected her mentally through her teen years. You know how kids are so self conscious. She is now 22 and doesn't seem to have it anymore. It did take quite a long time to figure out what it was. At first the drs thought it was seizures. She would all of the sudden become unable to stand and it would appear she had fainted, but she told us she could hear everything but just couldn't respond. Many tests were done. I know she had to stay very hydrated, and eat foods high in sodium and take sodium tablets. She had to quit running which she loved. It lasted a few years but she seems to recovered as she doesn't have these episodes anymore and is back to running and doing well. Do your doctors think this is something you can overcome? I'm so sorry you are going through this. I hope you can get some answers and things will improve.
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

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KellyBelle
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Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Tue Nov 28, 2017 9:49 am

Thanks for the info. Sounds like POTS, which mostly affects young women. I’m so glad she’s better!

I haven’t been told I can overcome this, but maybe with enough salt and compression garments I can get my blood pressure high enough to get the mail. :D
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: Dysautonomia, a new thing?

Postby Lee » Tue Nov 28, 2017 12:29 pm

KellyBelle wrote:I stand up/I fall down. My blood pressure/heart rate are so low I have a hard time going to my mail box. I’m supposed to wear full compression garments 12 hours a day, but with menopause that’s not possible. Everything has to be high salt in addition to popping salt pills every few hours.


I have the opposite problem, and I blame chemo for it. My blood pressure tends to run high. Started creeping up when on chemo. Along with my cholesterol. I have to watch my salt intake and I know that diabetes will be in my future. I started power walking soon after finishing chemo and I do believe it has helped keep many of my symptoms at bay. I was diagnosed with psoriasis a year ago, which surprised my PCP because most people are diagnosed in the 20-30 age group, me I was pushing 60. Again I believe this is chemo related.

And the fun just keeps on coming, . . .

Butt I do hear ya.

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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GrouseMan
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Location: SE Michigan USA

Re: Dysautonomia, a new thing?

Postby GrouseMan » Tue Nov 28, 2017 1:30 pm

Wiki article is as follows:

https://en.wikipedia.org/wiki/Dysautonomia

Two things that jump out at me are Guillain-Barre' Syndrome:

https://en.wikipedia.org/wiki/Guillain% ... 9_syndrome

and Lyme disease:

https://en.wikipedia.org/wiki/Lyme_disease

These symptoms these two present in addition to your menopause taking place could present as Dysautonomia.

This summer a friend of mine was being treated for Guillain-Barre' Syndrome and it wasn't working - finally the doctor ordered a Lyme disease test and that was what the problem was. A strong course of antibiotics cleared things up. This fellow spends a lot of time out of doors so I would have thought that Lyme would have been a first thought of the doc. Oh well.

I would look into some of these other possibilities if I where you and as with Cancer treatment get a second opinion. If this was caused by your Chemo long after the fact - I would suggest this is VERY RARE.

Good Luck,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

MissMolly
Posts: 444
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Location: Portland, Ore

Re: Dysautonomia, a new thing?

Postby MissMolly » Tue Nov 28, 2017 2:09 pm

Kelly:
Secondary adrenal insufficiency is a topic that I have written about on this forum to inform individuals of the risk associated with corticosteroid (i.e. dexamethasone) use normally provided as a pre-medication to quell nausea and to help promote a feeling of “feeling better while on chemotherapy.

Long-term use or high dose use of corticosteroids has the effect of suppressing the pituitary gland and, by association, production of the life-essential hormones cortisol and aldosterone by the adrenal glands. The production of the hormone renin, by the kidneys, can also be involved.

Postural low blood pressure is a hallmark of adrenal insufficiency. Other symptoms: Severe, diffuse muscle and joint pain; gastrointestinal unease, nausea, low appetite; sensitivity to lights and sounds; unrelenting fatigue, not relieved by rest; brain fog, difficulties with executive thinking and cognitive skills.

Symptoms are slow and insidious in their presentation over time (months to years). Adrenal insufficiency is not on the radar of most physicians. Mis-diagnosis is a common problem, with individuals languishing with a litany or incorrect diagnoses before being accurately diagnosed.

A baseline morning cortisol lower than 6 ug/DL would be suspicious for further testing. Baseline aldosterone, renin, and ACTH levels should also be taken. An ACTH stimulation challenge or Insulin Tolerance Test are performed to make a clinical diagnosis.

Adrenal insufficiency is a condition that anyone who has had corticosteroid use should be aware of and to bring to the attention of their physician if symptoms present over a prolonged period of time. Make no mistake, adrenal insufficiency is a debilitating condition. There is low physician awareness of adrenal insufficiency. You may need to be your own advocate to suggest initial testing or to ask for a referral to an endocrinologist.
Karen
Last edited by MissMolly on Tue Nov 28, 2017 2:20 pm, edited 1 time in total.
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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susie0915
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Dysautonomia, a new thing?

Postby susie0915 » Tue Nov 28, 2017 2:19 pm

MissMolly wrote:Kelly:
Secondary adrenal insufficiency is a topic that I have written about on this forum to inform individuals of the risk associated with corticosteroid (i.e. dexamethasone) use normally provided as a pre-medication to quell nausea and to help promote a feeling of “feeling better wile on chemotherapy.

Long-term use or high dose use of corticosteroids has the effect of suppressing the pituitary gland and, by association, production of the life-essential hormones cortisol and aldosterone by the adrenal glands. The production of the hormone renin, by the kidneys, can also be involved.

Postural low blood pressure is a hallmark of adrenal insufficiency. Other symptoms: Severe, diffuse muscle and joint pain; gastrointestinal unease, nausea, low appetite; sensitivity to lights and sounds; unrelenting fatigue, not relieved by rest; brain fog, difficulties with executive thinking and cognitive skills.

Symptoms are slow and insidious in their presentation over time (months to years). Adrenal insufficiency is not in the radar of most physicians. Mis-diagnosis is a common problem, with individuals languishing with a litany or incorrect diagnoses before being accurately diagnosed.

A baseline morning cortisol lower than 6 ug/DL would be suspicious for further testing. Baseline aldosterone, renin, and ACTH levels should also be taken.

Adrenal insufficiency is a condition that anyone who has had corticosteroid use should be aware of and to bring to the attention of their physician if symptoms present over prolonged period of time. There is low physician awareness of adrenal insufficiency. You may need to be your own advocate.
Karen

Would you go to an endocrinologist for this?
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

MissMolly
Posts: 444
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Dysautonomia, a new thing?

Postby MissMolly » Tue Nov 28, 2017 2:28 pm

Yes, an endocrinologist would be the clinical specialist involved in evaluating for adrenal insufficiency.

I have Addison’s disease (primary adrenal gland failure). I can attest that this illness is complicated and complex.

Anyone who has had dexamethasone (or other corticosteroid) as a pre-medication for chemotherapy should keep an awareness of adrenal insufficiency in mind. Symptoms may present months or years after use of corticosteroids, as the pituitary gland and adrenal glands will compensate as best as they can for as long as they can before petering out. Be aware. And be prepared to be your own advocate to ask for baseline testing of cortisol, aldosterone, renin, and ACTH.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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

Re: Dysautonomia, a new thing?

Postby hawkowl » Thu Nov 30, 2017 1:58 am

I also have experienced dysautonomia, presumably as a result of oxaliplatin. Interestingly, i had only mild peripheral neuropathy during my neoadjuvant FOLFOX, but shortly after completing my 8th cycle I began to experience progressive pain and numbness, balance issues, and a worsening tremor.

The symptoms of dysautonomia started around the same time, but it took awhile to definitely diagnose what was causing them. I do not have adrenal dysfunction and my situation is complicated by significant pelvic radiation disease. My main manifestations are gastroparesis (causing constant queasiness and and significant weight loss), severe constipation (mistaken for stoma blockages at first), orthostatic hypotension, bladder dysfunction, and poor temperature regulation (hypohidrosis alternating with diaphoresis). My peripheral and central neuropathy have also been progressive, even though my last oxaliplatin dose was more than 30 months ago. I remain on significant doses of gabapentin and lorazepam for that.

I do have a personal history of autoimmune disease (psoriatic arthritis) and have been on immunosuppressive therapy for that, and have a family history of chronic inflammatory demyelinating polyneuropathy.

Unfortunately, I have not found many treatments that really help all that much, although my queasiness and appetite have responded to marinol (in spite of the fact it actually decreases gastric motility). I eat frequent small snacks, eat a high salt diet, stay well hydrated, and move slowly and deliberately to avoid passing out. I have been working with a urologist, and will be having Botox injections next. I did work with a pelvic floor therapist and had some success with biofeedback but still suffer from urinary retention alternating with bladder spasm and incontinence.

It has been a frustrating experience to say the least, and I remain totally disabled at this point. It is indeed a very rare complication of cancer treatment, but you are not alone
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

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KellyBelle
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Re: Dysautonomia, a new thing?

Postby KellyBelle » Thu Nov 30, 2017 12:07 pm

THANK YOU for posting this.

I have hypothyroidism and an endocrinologist is on my regular care team. If you do a search for Dysautonomia, keep digging. Somewhere it will say it can be the result of toxicity from strong chemotherapy drugs. That includes those of us who had oxaliplatin or any other -platin drug.

I also have urinary problems in addition to sweating all the time.

I’m certain of my diagnosis only because my blood/platelets were sent to the Mayo Clinic.

Like a shadow hiding in my body all these years. :roll:
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses

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KellyBelle
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Joined: Sat Jul 19, 2008 9:25 am
Facebook Username: Kelly Davis Keeling

Re: Dysautonomia, a new thing?

Postby KellyBelle » Thu Nov 30, 2017 8:00 pm

Hawkowl,

Can you tell me more about your Botox injections and any other medications you’re on in addition to marinol?

It’s taken three years to get a diagnosis! We must be special because it is quite rare.

I am now totally disabled too. :(

Kelly
Diagnosed March, 2008
Stage IIIC
Colo-Anal Reconstructive Surgery April, 2008
Finished Folfox treatment November, 2008
NED! December 2008
NED! December 2011

Life is what we make it, always has been, always will be.
~Grandma Moses


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