Withering away without help

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Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Mon Dec 28, 2015 11:55 pm

Yes probably 5+ times as lots of my symptoms overlap.

weisssoccermom
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Re: Withering away without help

Postby weisssoccermom » Tue Dec 29, 2015 2:55 am

The confusion, facial twitching, etc. aren't signs of CRC. IF you had brain mets and IF they were extensive, then yes, it COULD make you have some confusion, dizziness, etc. BUT...you've now had a head CT AND a head MRI and nothing has shown up. And yes, enlarged lymph nodes DO show up on both the MRI and/or the CT. IF they were there, particularly in the numbers that you are thinking....they would show up on one or both of those imaging tests. While bone mets are more readily visible on something like a bone scan, docs CAN and DO see suspicious shadows, etc. on both of the imaging tests that you had which would lead them to order a bone scan. Again, the docs saw nothing that would indicate bone mets. I right now, have a friend battling lung cancer that has spread to a few nodes but mostly to her skeletal system and she is in excruciating pain and yes, hers is also in her spine. The docs saw all of this on a CT scan.....which led them to order a bone scan.....but the biggest thing is the PAIN from bone mets. It doesn't matter whether it is breast, lung or CC that spreads to the bones....bone mets are PAINFUL!!! My friend can no longer walk....the pain is just too unbearable and she is on constant pain meds/patches. You don't indicate that you are in that type of pain and members of this board who have bone mets AND friends that have had bone mets from different types of cancer all have one thing in common.....PAIN that is constant and PAIN that is unmistakable.

I have a difficult time believing that ANY ER doc is just going to discharge a patient who can't walk, is totally confused, etc. with all the symptoms that you mention. This will come across as sounding mean spirited but I'm not sure what you want the docs to do. They have ordered a plethora of tests (based on your posts) and NOTHING has been found to be awry. I started this post quite some time ago and am just getting back to it after Bev has posted many of the same things that I have tried to say.
Honestly, your symptoms don't sound like CC at all....not saying it isn't but just highly doubting it. CC doesn't cause a fever or skin lesions, even though it might be a very rare place for cancer to metastasize.

I would like to reiterate what Bev said and was going to say it anyway. We aren't doctors and can't give medical advice. We can only tell you about our experiences and pass that info along to you. Your scope is now 1 week away and no matter how much any of us tell you to just calm down, I doubt you will heed our advice. Just wait out the 7 days and get the scope done.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
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CaliforniaBagMan
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Re: Withering away without help

Postby CaliforniaBagMan » Tue Dec 29, 2015 4:02 pm

When I read "seem to be deteriorating mentally now" and "just recently starting on meds for depression" it reminded me very strongly of a family member.

Every year, this person goes into a tailspin around year end. We don't know, but we think it is a combination of stress from the holidays, onset of cold weather, and reduced hours of daylight. All sorts of problems manifest, complaints of physical ailments rapidly follow and then increase, and it persists until .... presto ..... Spring comes around. Then all is well again until the cycle repeats.

I do not intend to belittle your complaints. That is not the purpose of writing this, as I believe you are experiencing what you describe, or most of it. But I do suggest that you focus on the depression and receiving appropriate treatment and whatever medication might be helpful. If that is successful, maybe some of the physical ailments and complaints will lessen or go away entirely.

Having physical exams that are appropriate are always good. Nothing wrong with that. But I'd focus on each area and hope for the best.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Tue Dec 29, 2015 5:23 pm

Weiss,

Thanks for the long response. I think many of my symptoms resemble CC. Blood in stools/flat-ribbon stools, night sweats, abdominal pain, painful defecation. The other symptoms Ive listed are more 'general', but certainly could be attributed to most malignancies.

Really, I was hoping the ER could admit me and give me an emergent scope.

Cali,

When I said I appear to be deteriorating mentally, I meant as a result of my ailment. I do agree that getting on meds was a good idea, but it doesnt answer the question of why Ive been so ill. Ive been laid up in bed for over 2 months! I cant stress enough how ill Ive been.


I know I will get bashed for this, but Im starting to believe my episode the other day was due to leptomeningeal carcinomatosis. It sounds very similar to what I was experiencing. If I have another episode like that idk what Im supposed to do?

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CaliforniaBagMan
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Re: Withering away without help

Postby CaliforniaBagMan » Tue Dec 29, 2015 6:07 pm

I'd suggest staying as positive as you can. And kudos to you for seeking information from various sources.

If it helps, my family member with a seasonal disorder self-diagnosed themselves with a horrible afflication long ago. That was in 1998. The family was informed the afflication was terminal, and death was certain within 3-5 years. That never happened.

17 years later, my family member remains convinced of the self-diagnosed horrible afflication. If the self-diagnosis was correct, they should now be in the Guiness Book of World Records for the longest surviving patient of the proclaimed disease. There are sporadic visits to medical personnel, often punctuated by frustration that they don't agree with the terrible self-diagnosis. When one caregiver suggested exploring for a mentally based cause, it was met with denial, resentment, anger, and storming out of the doctor's office. We have since heard about the "quack" doctor for years thereafter.

Only you know what you are dealing with. But if you truly wish to feel better, I'd suggest exploring all the possible causes, that's all. If medical professionals examine you but don't find anything, what does that mean? Modern tests are quite good, so if there is something amiss physically it should be able to be discovered.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

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Bev G
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Re: Withering away without help

Postby Bev G » Tue Dec 29, 2015 6:41 pm

Leptomeningeal carcinomatosis. Really?

Leptomeningeal carcinomatosis.
Grossman SA1, Krabak MJ.
Author information
Abstract
Leptomeningeal carcinomatosis occurs in approximately 5% of patients with cancer. This disorder is being diagnosed with increasing frequency as patients live longer and as neuro-imaging studies improve. The most common cancers to involve the leptomeninges are breast cancer, lung cancer, and melanomas. Tumour cells reach the leptominges by hematogenous spread or by direct extension from pre-existing lesions and are then disseminated throughout the neuroaxis by the flow of the cerebrospinal fluid. Patients present with signs and symptoms from injury to nerves that traverse the subarachnoid space, direct tumour invasion into the brain or spinal cord, alterations in blood supply to the nervous system, obstruction of normal cerebrospinal fluid (CSF) flow pathways, or general interference with brain function. The diagnosis is most commonly made by lumbar puncture although the CSF cytology is persistently negative in about 10% of patients with leptomeningeal carcinomatosis. Radiologic studies may reveal subarachnoid masses, diffuse contrast enhancement of the meninges, or hydrocephalus without a mass lesion. Without treatment, the median survival of patients with this disorder is 4-6 weeks and death occurs from progressive neurologic dysfunction. Early diagnosis and therapy is critical to preserving neurologic function. Radiation therapy to symptomatic sites and disease visible on neuroimaging studies and intrathecal chemotherapy increases the median survival to 3-6 months. The major favorable prognostic factors include excellent performance status, absence of serious fixed neurologic deficits, normal CSF flow scans, and absent or responsive systemic tumour. Aggressive therapy for this disorder is often accompanied by a necrotizing leukoencephalopathy which becomes symptomatic months after treatment with radiation and intrathecal methotrexate. As currently available therapies are toxic and provide limited benefits, novel approaches are being studied. Further information on the mechanisms of neurotoxicity from antineoplastic agents is critical to providing better outcomes for this increasing common complication of cancer."


Do yourself a favor and STOP Googling stuff. I am starting to fear you are goofing around with us. It happens a couple of times a year around here. I think the attention and expressions of care can become the engine that drives this crazy train. As you have certainly noticed, members of this forum are cancer patients (some of them extremely and critically ill) and their caregivers. Please get back to us with your colonoscopy results. I hope you will believe whatever they are, as you seem to unable to accept the results of all the negative tests you've had.

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

alphagam
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Re: Withering away without help

Postby alphagam » Tue Dec 29, 2015 6:46 pm

You don't have long to wait until your scope and your questions will be answered. Again, I would say to stay off the internet! A few years ago, one of my daughters called me in a panic. She was sick and had googled her symptoms. She was convinced, and got very angry with me, that she had prostate cancer. She went to two different doctors, mad at them for telling her it was impossible, because she didn't have a prostate. The final, real, diagnosis was a urinary tract infection. A round of antibiotics and she was, and continues to be, just fine.
Follow your doctor's instructions for your prep, please stay on your anti-depressants, and let us know how your scope turns out!!!
Dx Feb 2010 4 cm tumor, just inside rectum
EUS stated T3 tumor
2nd opinion, need better path
Mar 2010 transanal surgery. Surgery by board certified CRS found tumor only in lining
6 exams of surg site, 3 PET, 3 scopes laterNED.
Scope in Mar2015, clean colon
Next scope/test in 3 years

peanut_8
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Re: Withering away without help

Postby peanut_8 » Tue Dec 29, 2015 7:01 pm

I see that our dear Bev has beat me this. leptomeningeal carcinomatosis

REALLY??? First you have colon cancer, and then it's breast cancer, lung cancer or melanoma. :roll:

We've lost a lot of really good people over the past year, and have many members who are suffering every day, knowing their options are over, and their time is fleeting.
Do you think they appreciate hearing from someone like you who over-dramatizes every bowel movement, and ignores well intended advice from our best and brightest members?

That was rhetorical.

I think you need to find a different outlet for your problems. There are numerous message boards on the internet, surely there is one better suited to your particular issues.
sorry to be so blunt
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Maggie Nell
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Re: Withering away without help

Postby Maggie Nell » Tue Dec 29, 2015 8:05 pm

I wonder what country you live in as it is easy to assume you are in the US, but
with no real identifying details, you could be anywhere in the world. I think you are
a medical student having us on.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...

Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Tue Dec 29, 2015 8:15 pm

Sorry if that rubbed some people the wrong way. I should not be self-diagnosing.

I wont post anymore until I get the results of the colonoscopy. If it is bad, I would hope to continue to post as this is a great resource. Thanks everyone for the help so far.

I live in the US btw (SoCal)

weisssoccermom
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Re: Withering away without help

Postby weisssoccermom » Tue Dec 29, 2015 8:23 pm

I also googled your self diagnosis of Leptomeningeal carcinomatosis and, like Bev, have to wonder where and why you came up with that one. Seriously? First of all, QUIT googling. Secondly, quit assuming that the each and every doctor you have seen is some sort of an incompetent idiot because they haven't come up with some life threatening diagnosis that you seem to crave. Let's be realistic here....based on what you have told all of us, you've seen many many doctors and by your own admission have had test after test run...and EACH and EVERY test has shown NOTHING is wrong. You know, it's extremely unlikely that all your blood tests AND the MRI/CT scans are all ok and that you still would have something seriously wrong with you. I have to be honest with you...I don't know how you're going to react if the colonoscopy shows a perfectly healthy colon. Are you still going to believe that you have CC?

Listen to us...we are NOT doctors and we can't diagnose you nor should we even attempt to. That's what the doctors are for. They are the ones that you tell your symptoms to...they are the ones that observe how you are acting...they are the ones that interpret the test results....and they are the ones that ultimately diagnose you. You don't seem to trust or have confidence in any of the doctors you have seen....will you ever trust any of them? Each and every time you have been to the ER those doctors have RELEASED you. Is it a conspiracy on the part of the hospital and doctors? Are all the doctors incompetent that each and every one of them is missing something? Seriously you can't possibly believe that, can you? Realistically, do you think that all of us here believe it?

I have to say that I find the title of this thread ridiculous, misleading & rather insulting. I can't say whether or not you are 'withering away' but to say that you haven't had any help is just downright WRONG. How many times have you been to the ER in the past few months? How many different doctors have you seen outside of the ER setting? How many technicians have drawn your blood or have done imaging tests on you....ALL ordered by doctors so how can you say that you haven't been helped? I will probably get some flack for saying this but do you have any idea how many of us on this board went to our doctors with very valid complaints only to be dismissed or told that we were too young? Many of us were turned down for a scope because we couldn't get a doctor to listen to us and you are coming on this board and complaining in post after post about this symptom or that and telling us you can't make it another 7 days until your scope! IF you are that ill....if you are in that horrible of a situation, a doctor wouldn't even attempt a scope. If you are as ill as you claim, how can you read all the posts and then respond to them? Remember, you think that you have some brain mets yet you don't seem to be confused in your postings.

Please....stop all of this. If you truly need help...FINE...but this constant barrage of complaint after complaint is terribly inconsiderate to those members who truly ARE at the end of their journey. Get your scope and see what the docs say but ask yourself what you are going to do if that test is also negative. AS I was getting ready to post this, I noticed your last post. Perhaps I don't need to hit the submit button, but will anyway. This isn't just about 'self diagnosing' yourself....it is bigger than that.....and you seriously need to recognize that.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

megan120
Posts: 127
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Re: Withering away without help

Postby megan120 » Wed Dec 30, 2015 2:56 am

I know you are still reading, so I thought I would ask a few questions that I have. I don't really expect a response, but I do hope you will at least think about what I am saying.

How long have you been taking the anti-depressant? Many of the concerns that you are having are also listed as common side effects of anti-depressants. Some anti-depressants (and other meds) can also cause the involuntary twitching and facial movements you have described. If you feel compelled to google obsessively, that is where I would personally start. I would not continue to try to tie all of these symptoms into a cancer diagnosis. All the normal results you have been having (normal ct/mri, labs, etc) are pointing away from a colon cancer diagnosis (especially a late stage that is causing so many problems), no matter how hard you try to put your symptoms into that box.

Any other medications or street drugs? I have seen many meth users come in to the ER convinced that they have cancer and other serious illnesses because of the paranoia that meth causes over time, and some of your other symptoms are also common with meth use. Sorry if I am way off base and have offended you.

I think that all of us understand how scary it is to have symptoms that are unexplained and how easy it is to get caught up with Dr Google and start diagnosing yourself with bad stuff. And it's always bad stuff with google. But you really need to slow down and try to stop looking for trouble. Every normal result should be reassuring to you, and not every minor symptom that you have had over the last year has to be related to what's going on with you now. Good luck with your scope next week. I hope it can ease your fears.
36 year old mama to 3 (8,5,3)
Dx May 2014
Stage IV cc with met to cervix
2/134 pos LN
partial colectomy with temp ileostomy
folfox with avastin 6/14
Oct 14, hyst-mets to uterus, rt ovary implants
1/6/15 6 rounds of folfox
5/4/15 done with 28 tx chemo-rad
7/24/15 completion colectomy, NED!

jbelle
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Re: Withering away without help

Postby jbelle » Wed Dec 30, 2015 4:59 am

I'm not saying you don't have physical ailments.

However, many of the symptoms you have described sound like severe anxiety.

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Maggie Nell
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Re: Withering away without help

Postby Maggie Nell » Wed Dec 30, 2015 9:57 pm

Donthinklong33 wrote:Sorry if that rubbed some people the wrong way. I should not be self-diagnosing.

I wont post anymore until I get the results of the colonoscopy. If it is bad, I would hope to continue to post as this is a great resource. Thanks everyone for the help so far.

I live in the US btw (SoCal)


Well, if the scope shows there is no nasty stuff going on as, it seems, the medicos you have seen have
been eliminating the impossible, then that leaves whatever remains, no matter how
improbable, as being the truth: you're either turning into a werewolf or a vampire! :shock:

Megan has made a good point about side-effects with the anti-depressant. Check back in with the
physician who prescribed that and have the dosage tweaked.

One of my old teachers was Norman Cousins (anatomy of an illness) who advocated for the healing power of humour.
Give Dr Google a rest (and this forum) and get some solid belly laughs behind you and dial the anxiety back a
notch or two.

If you can, move to Nevada.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...

Bat-Mom
Posts: 101
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Location: FL was RI

Re: Withering away without help

Postby Bat-Mom » Wed Dec 30, 2015 10:54 pm

Hi. Wow this thread got long fast! Thought I would add my two cents too. I have a daughter with pretty serious mental health issues. Thankfully she is very aware and understands when she is having episodes. Just about every symptom you have mentioned she has had. For her, it is anxiety. Through the roof. Sometimes her mess can make it much worse for her. There was a time that meds were too high and she looked like an advanced Parkinson's patient.

Please talk at length to a mental health professional. Good luck with the scan I hope that a good result will bring you some relief.
54 y/o
10-2013 colonoscopy
11-2013 colon resect
12-2013 stage 3b results are in 4 of 11 LN
12-2013 - 5-2014 folfox
9-2014 cea 1.7 12-2014 CT clear cea 1.7 3-2015 cea 1.6
6-2015 new doc new lab. Cea now 3.9???


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