Has anyone had a Paraneoplastic response post colon cancer?

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Has anyone had a Paraneoplastic response post colon cancer?

Postby StupidAssCancer » Sun Jul 14, 2019 2:41 pm

Has anyone had a Paraneoplastic response post colon cancer :?: ? I know it is rare for colon cancer however I’m seeing a neurologist who believes this is what is happening to me. I’m having all sorts of symptoms mostly all hit tertibly in January. I’ve been cancer free for 6 years however which makes him Believe cancer is back he’s just got to find it. :roll:
Here are my list of symptoms if anyone wants to read on
*Muscle spasms in rib cage like a Charlie horse
*Feet ankles legs hands arms fingers ache and feel swollen and stuck super stiff and tight they also get pins and needles and feel very hot then switch to very cold
*Ankles and wrists feel bruised and strained, lower back, neck as well, especially in the night and early AM
*Extreme fatigue like worse than any hangover ever
*Overall weakness
*Sleepiness for 5 days straight over and over
*If I do have to do something I do it feeling sick
*Short memory
*It feels like something is crawling or vibrating on my skin but nothing is like a electrical buzzing sensation
*Stairs are terribly hard both going up and coming down. Legs feel heavy and no energy as though I’ve been fasting
*Tripping and balance
*Every joint hurts
*Get really hot and over heated Waves of fever like heat (not hot flashes) feels like a flu like temperature
*My gate is different than it use to be. Very Hard to walk mostly my left leg
*When I go from sitting to standing or laying to standing the muscles in my buttocks contract and hurt really bad for about 30 seconds and then it goes away.
*Change in my speech it feels like it’s harder to get the words out and it feels like there are breaks in my speech and often I mispronounce or say the wrong word.
*I struggle with the use of my hands. I’ve become very clumsy and it’s like my brain and hands are not connecting Left hand is the worst, moves slowly and less strength than right, uncoordinated,
*I’ve noticed my balance and agility are totally off light ringing in ears goes away quickly
*Ringing in ears sounds like a super high pitch bell which fades away within a few seconds
*When ophthalmologist put the eye patch on my left eye I instantly got nauseas and lost sense of depth of field. It also felt like the room was spinning.
*Dizzy and lightheaded
*When closing my eyes I lose balance and tip over.
*Low grade fever sometimes accompanies symptoms
*both cold & heat sensitivity
*Tips of toes burning and hurting like on fire
*Vibrations on right leg and the feel that something is crawling on it
*Left buttocks and back hurting
*Super itchy
*Hands and feet super cold
*Abdominal muscles or intestine clenches up really really tight and hurts so bad and then finally slowly releases
*Metallic taste in mouth for no reason
*Have trouble getting my mouth to say what I’m thinking like it’s hard to make it make sense.
*Trouble thinking
*Not able to handle heat I’ve had to buy a fan and sleep with it on every night since January
*Changes in speech’s is also reflected in typing and trying to spell... I won the spelling bee championship as a child so this never had been an issue. example-thinking of what letters would make up the word. For example if I wrote serve I would type cerv as if I don’t know how to spell.
Stage 3c Colorectal Cancer
Surgery March 2013 Jpouch Temp Iliostomy
May 2013Chemo Infusions 5-FU Oxi Lev-Allergic
Radiation w/Xeloda Chemo-Allergic
Oct 2013 Reversal of Ostomy Nov 2013 Perm Ileostomy
Feb 2016 Ostomy collapsed moved to other side
Jun 2016 colon removed permanent ileostomy

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Re: Has anyone had a Paraneoplastic response post colon cancer?

Postby boxhill » Mon Jul 15, 2019 4:01 pm

I never even heard of this before, but it sounds dreadful. I'm so sorry you've been going through this. I hope they can help you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key

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Re: Has anyone had a Paraneoplastic response post colon cancer?

Postby ginabeewell » Mon Jul 22, 2019 6:35 am

Someone on ColonTown on Facebook just posted about this. Might be worth connecting with someone else who has experienced this? Her post got no response there so seems to be a rare experience.
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

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Re: Has anyone had a Paraneoplastic response post colon cancer?

Postby CRguy » Wed Jul 24, 2019 6:13 pm

Have the docs also considered any type of autoimmune disorder ???
Also a rare occurrence, BUTT we have had some members here who went on to develop them
after successful cancer treatments for CRC.

Your symptoms list seems to be mainly neurosensory and musculoskeletal in nature,
so a neurologist is a good doctor to work with for sure.

Wishing you all the best and please let us know how you are doing and what you can find out.

In Harmony
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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