Withering away without help

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Donthinklong33
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Withering away without help

Postby Donthinklong33 » Sat Dec 26, 2015 7:32 pm

Hi everyone

I have been browsing these forums over the last few weeks and they really are incredible. The amount of information and community feel is terrific.

Here is my situation: I am 33 y.o. My entire life Ive had bowel issues. I was diagnosed w IBS as a teenager and an adult. I have always had battles with going to the bathroom many times per day and violently. I have wiped blood countless times. My GI previously refused a colonoscopy due to age, and I didnt fight hard enough.

Well, along w my bowel issues has come a string of recent health problems. For 7 weeks in April I had low grade fevers everyday/nightsweats/extreme fatigue etc. I Did labs, saw doctors, but no diagnosis. Like an idiot I didnt go to my gi bc I was focused on the other symptoms. I got better, and in the middle of October I became very ill. Extreme headaches/brain fog/drenching night sweats/abdominal pain/pruritus/low grade fevers/sudden hair growth on my body/odd skin legions/weight loss. This has gone on with no improvement.

I have been rapidly declining the last 10 days or so, in total I am down to 172lbs from 186 (most in the last 3 weeks). I have no appetite and cant move. I have had painful and bloody bowels at times, recently just flat and thin chunks that seem blocked and are difficult to get out (telltale sign). My lower belly under my belly button has been in pain for weeks.

Ive seen countless Doctors (gp, neuro, rhum, gastro)and had hundreds of labs drawn. My Gastro did an endoscopy but wanted to wait on the colonoscopy?! Ive been to the ER six times in the last 2.5 months. I have had ct of head/neck/ chest/abdomen/pelvis. Mri of brain and spine. Nothing has been abdormal. My labs are normal. I was extremely dehydrated and nearly fainted on Christmas Eve and ended up in the ER. My blood pressure was extremely low for me 85/58. I spoke with the Drs there, and they agreed I need a colonoscopy asap. However they said they couldnt order an emergency one.

I was able to get the first available appointment after the holidays on Jan 4. I honestly dont know if I will hang on that long as I seem to be experiencing all the end stages. It is very scary. I am worried I am going to go without a diagnosis.

After reading the boards I went out and had my CEA tested. It was 3.0. So there is no doubt in my mind I have CC, and it seems to be the end stages since I have been this gravely ill (dark eyes pale skin in and out of confusion).

My gp also said I dont need to be admitted and to wait for the 4th. I know that there is nothing anyone can do to "save" me, but its so depressing to sit here and wither without help.

Since my scans were clear, I suppose I just have heavy lymph node involvement and possible skin mets (I know its uncommon). I dont know what to do as I think the ER will just turn me away again! I just wanted to post my story and maybe get some advice. Thanks.

Jonathan

weisssoccermom
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Re: Withering away without help

Postby weisssoccermom » Sat Dec 26, 2015 8:44 pm

Jonathan,
First of all....BREATHE. You are NOT in the 'end stages' so quit worrying about that. You state that you have had either a CT or MRI of pretty much your entire body....and nothing seems amiss. IF you had colon cancer that had spread to other organs (or pretty much any other cancer as well) something would have shown up on either or both of those tests. Certainly I'm not saying that you couldn't have colorectal cancer and you might even have a blockage BUT....IF you had a tumor that was large enough to block your colon, it would be very likely that one of those tests would have picked up something suspicious on the CT.

As for your CEA.....you can't just arbitrarily state that a level of 3.0 guarantees that you have colorectal cancer. First of all, there are two different CEA tests....and you can't compare numbers from one to the other. In the older test, a level of 2.5 or under is considered normal for a non-smoker.....levels up to 5 are considered 'normal' for a smoker. You don't say whether or not you are a smoker or not so simply saying that you have a level of 3 means nothing out of context. The newer test has a 'normal' level of up to 5 for a non-smoker and like the other test, a higher level for a smoker. Do you know which test was performed? Was it the Bayer/Seimens or the Roche assay test? As I said earlier, you can't compare the two...totally different normal levels. Secondly, while minor inflammation doesn't cause an issue, if something like a bad flareup of IBS or something even like gastroenteritis could easily cause a higher than normal level.

Now, BREATHE again. January 4th isn't that far away. IF the doctors, based on all the test results thought you were in a dire emergency, they could have and would have ordered a scope STAT. I'm NOT saying that you don't need a scope but waiting 9 more days is likely not going to cause you any undue problems. You have to stop trying to diagnose yourself and let the doctors do their jobs. Based on what you have said, it sounds as though a lot of testing has already been done so it's not as though the doctors aren't trying to figure this out. Again, solely based on what you have said, no one can see any type of suspicious cancerous like activity in your body and although an MRI and/or a CT aren't 100% foolproof, they are extremely reliable and helping the medical community figure out what is wrong with a patient.

Try to relax and just get through the next 9 days as best as possible. Watch some Hallmark movies, take a drive and see some Christmas lights, read a book or just enjoy whatever type of weather you are having. You know your body and obviously it sounds as though something is wrong so you are doing the right thing by trying to get to the bottom of this. Let the doctors do their job....they will get this figured out.
Good luck.
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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Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Sat Dec 26, 2015 9:18 pm

Wow. That was an incredibly thoughtful and insightful reply. I truly appreciate that.

I am a non-smoker and it was the Roche test. In fairness it was within the normal range listed for LabCorp. However, I did see a study where 97% of "healthy" people will have a CEA of <2.5. Maybe that was in regards to other test? I also did a CA-19 and it was 11.

In my initial post I probably downplayed my bowel issues. Basically most of my life Ive had to immediately go to the toilet after eating. Was normal for me to go 10+ times/day. I was often in pain while pooping. I did have a couple instances of black tar dark stools recently. But the last couple weeks its only been very flat, tiny chunks. Im a complete idiot for not getting a colonoscopy sooner, not only to detect CC but just to find out what is going on to improve my quality of life. My diet has inproved greatly over the last few years, and as a result my movements became more normal. So that is my pathetic excuse.

As for my symptoms, there is something seriously wrong w me. I have not been able to work or excercise in over 9 weeks!! Luckily I am self-employed, but I have been severely ill. Just strange systemic things that have come and gone. The drenching night sweats/extreme fatigue have been the hallmarks. Ive also developed a cough over the last 4 weeks with no explanation, hence my Gis Endoscopy. He found nothing. It has also been getting worse (no mucus just dry like I have something stuck and difficulty swallowing)

I know I sound like a hypochondriac, but I promise that is not how I am. I normally put things off. Stupidly I should have been more proactive w Drs visits. I do take care of myself wrt to diet and excercise.

It just seems to me that I put this off for too long, and now its too late. I cant express how ill Ive been and getting worse everyday. My mom had to help me walk into the ER yesterday, and I took 3 bags of IV fluids and had a very low BP. She is also very concerned.

The problem is the symptoms I have are so typical of a malignancy. Night sweats/recurrent fevers/weight loss/extreme pruritus/sudden body hair growth. And all my gi symptoms are textbook. Of course these could all be due to other illnesses, but we have honestly ruled out mostly every other possibility other than malignancies (and most of those).

If I do have CC, Im ready to battle. I just hope I have a chance to fight, as I dont know how I could possibly go through treatment/surgery being this ill.

Again, thanks for the reply that was awesome. I also want to add that I really admire all of the caretakers and people battling against this awful disease.

Jonathan
Last edited by Donthinklong33 on Sun Dec 27, 2015 12:50 am, edited 2 times in total.

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vilca11
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Re: Withering away without help

Postby vilca11 » Sat Dec 26, 2015 10:13 pm

Dear Jonathan, I second previous email and advice. Pain is not an easy thing to ignore, it is a very valid symptom for any disease that might cause that pain (not necessarily cancer) and there is something wrong with your body for sure. It might be cancer, it might be diverticulatis that they did not spot on CT, it might be familial polyposis, it might be Chron's disease, it might be twisting of the intestines, etc... For now you do not have any other choice - you have to wait, sweetheart, for Jan 4. It is hard to wait, very hard... but you have to do what you have to do in life... my heart goes to you and all young fellows on this board, who suffer so much... we, the older generation, lived our lives, we loved and had our passions, we brought up our kids, we have results of that lived life, we have our experience and wisdom, we have satisfaction with how we spent our time on Earth... it is not that hard to be ill or die at our age... It is much-much harder for young people.... You do not have the dx of cancer yet and, hopefully, would not have. Meet the New Year in a positive mood - yes, in spite of the pain, in spite of the anxiety, in spite of the racing mind... Your psycho has a lot to do with the pain on a physical level, dear boy... Try not to worry (yes, easier said than done) - it does not help, just increases the sensitivity to pain. Instead, switch to whatever you love doing if you can, take pain killers (bad advice, but needed in such situation), get your gp to Rx you anti-anxiety meds asap, have a drink (if you like it), sleep as much as possible, so that time to Jan 4 flies faster - anything is better than to have feelings and thoughts you have. Soon, we will know what the problem is, colonoscopy, of course, had to be done to begin with - I am so upset that you were "in works" for so long and with so many symptoms they did not do a scope yet... And when we know, it will be much easier to deal with the situation - just step by step needed actions... You do not have anything scary - if it was, CT and MRI would registered it... Some bowel disease is as a good guess, as a non spread cancer (early stage). So, calm down for now, honey - it is very good that you vented here. Venting helps a big time... Please keep us informed, Jonathan. And here is a healthy berries drink to our health - Happy New Year!
Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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O Stoma Mia
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Sample colonoscopy prep instructions

Postby O Stoma Mia » Sun Dec 27, 2015 10:43 am

Donthinklong33 wrote:I was able to get the first available appointment after the holidays on Jan 4... My GP also said I don't need to be admitted and to wait for the 4th...

It's very important for you to follow your doctor's instructions for colonoscopy prep. If you were not given any written instructions, you can look at a sample set of instructions here:

Colonoscopy prep brochure
http://www.westchestergi.com/docs/WCGI_colonoscopy_brochure.pdf

Also, be sure to ask for a printed copy of the colonoscopy report that they generated (with photos, if possible). Here is an example of one such report:
http://www.md-reports.com/colon_rpt.pdf

You may also want to read the following journal article: to check if they did, in fact, do a good, complete colonoscopy:
Colonoscopy: Quality Indicators
http://www.nature.com/ctg/journal/v6/n2/pdf/ctg20155a.pdf
Last edited by O Stoma Mia on Mon Dec 28, 2015 2:01 am, edited 2 times in total.

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Bev G
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Re: Withering away without help

Postby Bev G » Sun Dec 27, 2015 11:19 am

Hi Jonathon,

It seems the only doc you HAVEN'T been to is a mental health therapist. This might make a lot of sense in helping with the extraordinary anxiety you have. I'm not saying that you don't have cancer, though I sincerely doubt that you do. This same issue came up on the forum within the last week or so....a young man absolutely convinced he had end stage colon cancer. He got his colonoscopy and was fine. I had mentioned to him how incredibly frequently people come here, certain they have cancer, and in the 6 years I've been on the board I don't recall even ONE that did. This guy was good enough to come back and tell us everything was OK...so many don't even bother.

I hope you'll seek some support to get through the next couple of weeks. And, I hope you'll come back and let us know how your results turn out. I feel certain you do not have colon cancer, and just as certain you have some terrible health anxiety. I hope it will all go very well for you, and I hope you get extraordinary relief soon.

Best wishes for your new year.

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

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Re: Withering away without help

Postby DarknessEmbraced » Sun Dec 27, 2015 4:20 pm

Good luck with your colonoscopy. I agree with everyone on here that it's impossible to know what's going on without a colonoscopy. CEA can rise for other reasons besides cancer. I agree that it would be helpful to get all the support you can.*hugs* It's very stressful not knowing what's going on. Thankfully you don't have to wait long for your colonoscopy. We are here to support you!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

weisssoccermom
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Re: Withering away without help

Postby weisssoccermom » Sun Dec 27, 2015 5:46 pm

Jonathan,
You have edited your first post (perfectly acceptable) since I first replied. PLEASE stop looking for trouble. Again, I can't say that you don't have CC but...in an edit you mention that you 'suppose you have heavy lymph node involvement' since the CT scans didn't show any organ involvement. Clearly you are not aware that a CT and/or an MRI WOULD show lymph node involvement IF it was there. We all have lymph nodes throughout our body and doctors look for enlarged lymph nodes IF they believe that there is a possibility that a patient may have cancer. Even if a doc doesn't suspect cancer, IF they saw enlarged nodes, that would be a clear signal that something was wrong and they would dig deeper. As for skin mets...I've been on this board for over 8 years now and have NEVER heard of anyone mention them so I wouldn't even go there.

I'm not saying that you don't have something wrong with you nor am I saying that you do but I have a very serious question. Please don't dismiss this BUT....you seem to be convinced that you have CC....what if you don't? What are you going to do if your scope is perfectly clear? Even if you have a polyp that is benign and the docs give you the 'all clear' with respect to CC, what are you going to do? I ask because you have convinced yourself that you must have CC and that you must be in the end stages....and I have to wonder how you will react if you have a perfectly clear scope? What then? It appears that you haven't even entertained other ideas....perhaps you have Crohn's disease.....perhaps you have IBS....perhaps your diet is just messed up and you have nothing. My hubs recently had a scope....about 10 days ago. He wasn't at all convinced that he had anything wrong but I was concerned because of some changes that he was experiencing. He had a perfectly squeaky clean scope. My point is that, as my CC surgeon said (she did the scope), many people have changes in their bowel habits and they don't have CC!! That doesn't mean that you shouldn't get it checked out....far from it.....just quit looking for trouble.

Reading again, you say that because your CEA is 3.0 on the ROCHE scare, you are absolutely convinced you have CC. The "NORMAL" limits for a person utilizing that test is 0-5 for a nonsmoker. Seriously, a level of 3 is smack in the middle of the normal level so WHY are you concerned about one test result that even you saw was in the 'normal' level? And yes, to answer your question....the 2.5 level is likely referring to the Bayer/Seimens test...the older test that was around for quite some time. Your level is NORMAL and while that doesn't mean anything one way or another (many people, like myself, had 'normal' or even low levels yet had cancer) you need to STOP worrying about this one for right now. You mentioned the CA-19 test...your level was 11....anything under 37 is considered 'normal'. Again....quit worrying about this.
You have doctors who have performed extensive imaging tests....and all showed NOTHING was wrong. You had two reliable blood tests (assuming at the same time, the docs also did a CBC and a CHEM panel) with both levels within normal levels. By your own admission you've had hundreds of labs drawn...again, everything was 'NORMAL'. Your endoscopy was normal...everything is NORMAL. Frankly, a lot of the symptoms you describe send red flags for me that you possibly need to see an endocrinologist. Things like sudden hair growth, odd skin lesions, headaches aren't symptoms related to CC....they sound more like a hormonal/endocrine type of disorder.

Get your scope but be prepared that nothing may be wrong. Sorry to be so harsh but, based solely on your posts, you've had extensive workups and nothing has been found. It sounds melodramatic to say that you don't know if you can hold on until the 4th to have the scope. You can and you will.....the docs would have admitted you and ordered a scope the next day if they had felt that this was truly a dire situation.
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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chrisca
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Re: Withering away without help

Postby chrisca » Sun Dec 27, 2015 10:28 pm

Diverticulitis is another possibility with your symptoms. Your CEA is nothing to be concerned about at this point, with a colonoscopy scheduled soon. Don't obsess over things for now, a week will make no difference either way. Colonoscopy should identify diverticulitis and any of the other possibilities others have discussed here. See this link for what to ask the endoscopist to be sure you get a good exam:

viewtopic.php?f=1&t=51653&p=401797

Given you've had these symptoms for a very long time, If I were a betting man I'd say you have IBS with internal hemorrhoidal bleeding. Get an anemia test, it's just a blood draw, to see if the other symptoms you have indicate anemia due to the blood loss. None of those things are life threatening. Let us know what you find out. We're rooting for you to not need our support!
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

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Re: Withering away without help

Postby jillbugs4110 » Mon Dec 28, 2015 10:04 am

What end stages with a 3.0 cea ok. Take it a. Day at a time go to er tell them your doubled over in pain u will get a ct a colonoscopy It is usually people like you have nothing it is those of us living full loves no clue we are walking the green mile it will be ok
Live One Day At A Time
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Re: Withering away without help

Postby dianetavegia » Mon Dec 28, 2015 11:57 am

Labcorp states 3.9 and under is normal for a non smoker. 5.6 for a smoker.

A BLOCKAGE will cause an elevated CEA, as will polyps, thyroid problems, any infection, and CEA can vary by .5 within hours.

You've gotten excellent advice. I think Bev hit the nail on the head. Many of your 'cancer' symptoms can easily be explained away.

Itching? Hot showers or dry skin.
Night Sweats? Muggy rooms, too many blankets on the bed, heavy p.j.'s, drinking alcohol, etc.
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

Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Mon Dec 28, 2015 8:35 pm

Thanks for the responses everyone. I will try to address everyones response as I have nothing better to do bc I cant move from bed. First I wanna talk about what happened yesterday, as it was very scary.

Yesterday morning I began getting very confused and felt like passing out. I knew where I was, but I felt like I was outside of my body. I was having trouble walking, was confused and speaking very slowly. The strangest thing was that I was straining/flexing my facial muscles in every way possible and was also making odd movements with my arms. I was lifting my cheeks up and down and moving my mouth at all angles. The facial straining/movements were nonstop. My mom, the angel who has been taking care of me was very scared. She said my eyes were terrifying.

I went to the ER and waited with my mom for a bit as everyone in the waiting room stared at me out of the corner of their eyes. After I got in, I couldnt really communicate with the Dr. I was very restless and he would ask me a basic question and I would stress to slowly give a short answer. He ordered a head ct, and even though I told him I would rather not bc I had one only a few weeks ago, he shrugged me off. The CT came back normal (obviously) and he drugged me up with Benztropine, Benadryl, and Lorazepam. That made me very tired but I was still twitching, albeit not at the rate I was earlier. I tried to explain to him my situation, but failed pretty bad. My mom was very scared and asked if I could be admitted, but he declined. Eventually he gave me a few scrips and discharged me. I continued to twitch for a few more hours, but I did lose most of the confusion. Ive never had anything like that happen before.

I woke up this morning feeling ok, but about an hour in I started to get dizzy and confused again. Talking really slow and straining my face muscles, although not at the rate I was yesterday. I began to say odd things about CookieMonster(wtf), and my sister came over to look after me. I regained normalcy after a couple hours but Im terrified at these episodes. Im dropping weight rapidly, and seem to be deteriorating mentally now. Another new symptom today is a sharp jabbing in my liver. Its only lasted for a few seconds and only happened a couple times. This is so freaking scary.

I have two very suspect skin manifestations. One is a psorasis-looking spot that formed and has been growing the last week or so. Ive never had psorasis before. It is formed next to a scab from a mole I recently had biopsied (this is expanding) . There are other small patches of redness forming on other sides of the scab. It is very suspect because it formed next to a healing wound. Can I post pictures here?

The other questionable spot is a blackish legion on my right temple that formed about 4 weeks ago. It has been more slow growing than the rash, but it is getting larger. It is slightly painful to press down on. Again, Ive never had a legion like this.

So what am I supposed to do? I am in such awful shape that my mother will probably have to wheelchair me into the Hospital on Monday when I get my colonscopy. I truly believe that I have CRC, it spread to my ln, bypassed my organs for now, and has spread to my skin. As for the facial twitching and neurological issues, Im assuming it spread to my spine recently? Im not a Dr, just my best guess.

I want to address everyone that responded. I am not being argumentative and I genuinely appreciate the help. I just wanna make my point.

Diane,

The itching came and went. It lasted for a period of 2-3 weeks. At first it was head to toe and got worse at night. Really bad at night, it felt like I had ants crawling all over my body. Then it was mostly localized on my face and head, especially my inner nostrils. I wanted to rip them out. This is when my Dr ordered the brain Mri.

I get drenched everynight regardless of where I sleep. I havent had a drop of alcohol since I became ill and didnt drink much before. I sleep w the A/C at 68 and a tiny blanket and Im drenched. Its not just my apt either, anywhere I sleep.

Chris,

Wouldnt one of my scans show if I had diverticulitus? Also, while some of my symptoms overlap, it seems like a bit of a stretch imo. Dont forget I had another illness in April. Whatever is going on is systemic and wreaking havoc on my entire body. I dont think Divi had most of my symptoms. Also, Ive been tested and Im not anemic.

Weiss,

Thanks for clearing up the part about the lymph nodes. I thought with cc, lns generally arent enlarged on ct/mris? I was under the impression that you need a Pet or biopsy to determine ln involvement? Im probably wrong.

Searching the board, a few people have mentioned getting skin mets. From studies it seems to happen from 6-8% of the time.

Bev

I do have a therapist that I speak to, but for unrelated issues. I never had issues with health anxiety in the past, but I have spoken to her about this. I will definitely update this thread regardless of the result.


Vilca,

That was such a sweet message.
I am also very upset that it took so long to get the colonoscopy. I had to battle w my gastro and tell him about the CEA for him to agree (he yelled at me for taking a cea). I dont think twisting of the intestines can cause any of the systemic stuff Ive been experiencing.



Im a very logical person and Ive tried so hard to find something else it could be. What worries me most is that generally symptoms like this dont show up until the very late stages of cancer. I dont think I have alot of time and would at least like to have a diagnosis and some way to fight for a little bit.

Thanks for all the positivity, it means alot right now.

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Bev G
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Re: Withering away without help

Postby Bev G » Mon Dec 28, 2015 9:35 pm

Hi again,

i think you said most of your symptoms don't show up until the late stages of cancer? The symptoms you're describing don't even show up with the late stages of colon cancer. Things like liver failure, respiratory failure, bleeding if a tumor invades a vessel...things like that. Please DON'T post photos! With few exceptions we're not doctors here, and couldn't possibly speak to any skin lesions with any authority.

Many of the long-term survivors on here have made suggestions to you and tried to re-assure. No one here could possibly know if you have cancer or not. You've had more testing done than most of us who do have cancer, and all of this testing has proved negative. The fact that ER docs are unconcerned enough to send you home, despite the abundance of visits you had should tell you something.

You said you see a therapist. This is a personal question, butt you've been pretty personal with us...do you have a mental health diagnosis?

Did they send in a neurologist to see you when you were having all that facial twitching? Was your lab work fine?

Good luck with the upcoming colonoscopy.

Be well.

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

Donthinklong33
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Re: Withering away without help

Postby Donthinklong33 » Mon Dec 28, 2015 9:59 pm

I dont mind telling you about my mental health status. I struggle with depression at times, but had never taken medication for it. Relied on talk therapy/meditation/excercise/clean living. Im actually just recently starting on meds for depression. Depression has never been a main focul part of my life, but I wanted to address it early because I saw what it did to my father.

They did not send in a neuro. Although I have seen a couple since this whole ordeal started and they cant find anything/give an explanation for the brain fog and headaches I had when this started in October. No ms legions etc.
Last edited by Donthinklong33 on Mon Dec 28, 2015 11:56 pm, edited 1 time in total.

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Maggie Nell
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Re: Withering away without help

Postby Maggie Nell » Mon Dec 28, 2015 11:52 pm

Have you been tested for HIV/AIDS somewhere along the line?
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

Ordained Dudeist Priest, the Church of the Latter-Day Dude 8)


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