Withering away without help

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LeonW
Posts: 358
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Withering away without help

Postby LeonW » Thu Dec 31, 2015 5:22 am

Donthinklong33 wrote:I wont post anymore until I get the results of the colonoscopy

When will that be? Anytime soon?
L
Dec 2012 - CC 2 unresect liver mets, CEA 41.8 (MM 65yrs)
Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Aug - 2x PV embolization (both failed)
Sep 2013 - R liver resect, 25d hosp (liver failure/delirium, lung emboli, encephalopathy), no living cancer (pCR)
2014/15 - recovery, scopy: 2 polyps
2016 - new town/life
2018, scopy: 2 polyps
2018/20 low (1.0-1.4) CEAs/clean CTs: 4x2014, 6x2015-17, 3x2018-20
next June 2021!

AngelaN
Posts: 206
Joined: Tue Jan 28, 2014 9:00 pm
Facebook Username: angelamnicholas

Re: Withering away without help

Postby AngelaN » Sat Jan 02, 2016 3:18 pm

You should also be tested for celiac disease. Could explain a lot of your symptoms including the skin changes.
DH diagnosed with Stage 4 CRC Nov 2013
11 tx Folfox/Avastin; LAR/liver resection/introp RF of liver - May 2014
3 treatments FOLFIRI
Lung resection - Sept 2014
FOLFIRI + Avastin x 10 treatments
Avastin+5FU q3 weeks x 4
SBRT x 1 lung met
RFA for remaining 3 in Oct and Nov
SBRT for liver met Jan 16
lung mets growing
Enrolled in NIH TIL trial Oct 16
XRT for lung met 12/16
Cells didnt grow for TIL trial Feb 17
Waiting for NCT03085914 at Penn

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Maggie Nell
Posts: 1146
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Withering away without help

Postby Maggie Nell » Sat Jan 02, 2016 9:35 pm

Hey J.

Just going to park this link in here for you : Centre For Advancing Health

http://www.cfah.org/blog/posts-by-author/Jessie-Gruman

I'm figuring that New Year resolution you made to not Dr Google had a half-life of 4.4 hours... 8)
Reckon you'll find something written by Jessie that will give you a little extra oomph in your tank.
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...

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Withering away without help

Postby Bev G » Sun Jan 03, 2016 7:01 pm

Hello Jonathan,


I think your colonoscopy is tomorrow. I hope it goes well and I hope we'll hear back from you with the results tomorrow.

Be careful doing the prep just right!!!

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
Posts: 11
Joined: Sat Dec 26, 2015 7:01 pm

Re: Withering away without help

Postby Donthinklong33 » Sun Jan 03, 2016 9:26 pm

You are correct, the scope is tomorrow at 11am.

I followed the instructions, and now Im enjoying this wonderful experience :)

Thanks for the well wishes, and Ill update with the results.

Btw to whomever asked, I dont do meth!!

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Withering away without help

Postby Sams wife » Sun Jan 03, 2016 11:45 pm

Good luck tomorrow. I would say I hope everything turns out good but then you still won't have an answer.

I'd 2nd the celiacs disease. They told my SIL she may have it. After they got done with their testing they diagnosed her with H-pylori. They gave my brother meds just in case. I guess it is an expensive test.

I hope it's not cancer but I know how much it sucks waiting on answers
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Donthinklong33
Posts: 11
Joined: Sat Dec 26, 2015 7:01 pm

Re: Withering away without help

Postby Donthinklong33 » Mon Jan 04, 2016 12:13 am

Already tested negative for Celiac :(

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: Withering away without help

Postby peanut_8 » Mon Jan 04, 2016 1:43 am

Good luck with your scope tomorrow, Jonathan.
Best Wishes, 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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CaliforniaBagMan
Posts: 330
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Withering away without help

Postby CaliforniaBagMan » Mon Jan 04, 2016 8:29 am

Good luck with your test.

In a friendly way, I hope you don't join the colon cancer "club." And that you better learn the root of what might be going on.
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
Posts: 11
Joined: Sat Dec 26, 2015 7:01 pm

Re: Withering away without help

Postby Donthinklong33 » Mon Jan 04, 2016 10:00 pm

Great news, the result came back as 'normal colon'.

I am obviously very relieved. I will have to continue to work with my Doctors to find out why Ive been so ill, but this is a huge weight off my shoulders.

Thank you to everyone for your kind words and advice!

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Withering away without help

Postby Bev G » Mon Jan 04, 2016 10:03 pm

Very happy to hear it!
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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CaliforniaBagMan
Posts: 330
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Withering away without help

Postby CaliforniaBagMan » Tue Jan 05, 2016 9:25 am

So, in the end, "withering away without help" was untrue, as many had grown to suspect.

If this thread follows the pattern of other similar threads from the past, we will never know if the OP has mental health issues, some other disease that is cloaking itself to manifest all sorts of symptoms, or if this was some sort of sad prank.

Learning that you have a clean colonoscopy result is welcome news. Everyone here with legitimate cancer issues would certainly hope and wish for such a test result. But if that result also points the trail toward mental health issues, then I would like to wish the OP the best for the future, and that might be needed. Mental heath challenges exist in my family, and it is not an easy road. Just the post title, seemingly crafted to lure attention and draw sympathy, indicates that something is going on.

Although I risked dying from cancer, over the course of a lifetime I think I had it easier than those in my family who deal with mental health struggles on a continuing basis. It can make for a very jumbled and difficult life and the pursuit of a treatment itself can be jumbled and difficult. One family member, each time they finally get the right medication, causing them to start to behave more normally, promptly deems themselves "cured" and then throws away the medication. Since they have been "cured" of mental health issues, the medication is no longer needed, according to them. That action to go off medication then re-sets the cycle to repeat, yet another time. Just like all the previous times.
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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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Withering away without help

Postby vilca11 » Tue Jan 05, 2016 4:54 pm

I have a bitter taste in my mouth... how someone can do it to a cancer patients? He is not mental, his emails are evident of that, as well as of the fact that he is as far from the confused, as I am from my beloved dog and cat in Vilcabamba.... what a shame... :(
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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Maggie Nell
Posts: 1146
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Withering away without help

Postby Maggie Nell » Tue Jan 05, 2016 6:05 pm

CaliforniaBagMan wrote:
Although I risked dying from cancer, over the course of a lifetime I think I had it easier than those in my family who deal with mental health struggles on a continuing basis. It can make for a very jumbled and difficult life and the pursuit of a treatment itself can be jumbled and difficult. One family member, each time they finally get the right medication, causing them to start to behave more normally, promptly deems themselves "cured" and then throws away the medication. Since they have been "cured" of mental health issues, the medication is no longer needed, according to them. That action to go off medication then re-sets the cycle to repeat, yet another time. Just like all the previous times.


Well, you've just described the "apartheid" that exists across the board in many countries and cultures as to how physical illness is
better understood than mental health issues.
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
Posts: 11
Joined: Sat Dec 26, 2015 7:01 pm

Re: Withering away without help

Postby Donthinklong33 » Wed Jan 06, 2016 12:57 am

I wont post here anymore, but I read the replies and wanted to respond one last time.

It was not my intention to offend anyone in anyway. I genuinely apologize if I did. My symptoms are real, and I certainly wasn't playing any sort of 'prank'. Im unsure what the 'prank' would be? I am a good person with a kind heart and came to the forum to get answers and support.

As I mentioned, I have been diagnosed with depression, but no therapist has ever diagnosed me with any sort of health anxiety, and its never been an issue in my past.

Ive truly been very ill recently and am desperate for answers. I will continue to look for answers with my Doctors.

Again, Im sorry if I offended anyone. Good luck to everyone and I hope every single member beats this awful horrific disease. Best wishes.


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