Checking in.....STILL here, question for NED'ers

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Cj51
Posts: 886
Joined: Thu May 13, 2010 5:58 pm
Location: Midwest

Re: Checking in.....STILL here, question for NED'ers

Postby Cj51 » Sun Jan 17, 2016 3:52 pm

I'm finding this an interesting and validating read. As grateful as I am to still be here, I'm also dealing with a lot of leftovers from the cancer treatments. Neuropathy, ongoing bowel issues, vaginal stenosis, hearing loss and memory and brain issues, etc. Much like everyone else here.

I don't usually say anything when people assume that I'm "just glad to have that all behind me", because I don't really want to share it. It's one of those things people wouldn't understand unless they'd been there.

Best to all of you,

Cj
DX Stage IIIb RC, T3N1M0, April 2010, 51
6 wks Xelox/rad 6/10
resection, temp illeostomy 8/10 Complete response!
12 rounds FOLFOX for clean up 9/10, Allergic to Oxi, started Xeloda only 12/10
Ileo takedown 9/28/11
10/15 NED

PainInTheAss
Posts: 652
Joined: Tue Jul 02, 2013 3:08 am

Re: Checking in.....STILL here, question for NED'ers

Postby PainInTheAss » Mon Jan 18, 2016 6:11 am

I know, it's like telling a group of molestation victims that your dad was emotionally unavailable. Acknowledging that it could have been much worse doesn't give you a happy childhood or mean that you don't have valid reasons to feel disappointed.

NED is another stage of cancer treatment. I like that.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

jean60
Posts: 426
Joined: Sun Sep 02, 2012 3:47 pm

Re: Checking in.....STILL here, question for NED'ers

Postby jean60 » Tue Jan 19, 2016 9:26 am

Rob in PA wrote:Thank you all for posts...definitely makes me feel I'm not alone..butt not in a good way.


Rob in PA, thank you for this post that I have read through several times now. This is one that makes me feel I have something to add and makes me feel that I am not alone. I get the sense from reading others' responses that you have accomplished that for a lot of others.

I've had two cataracts, one fixed. One eye that waters like crazy..they tell me that's from dry eye. ?? Worst is the neuropathy in my feet that just gets worse, the venous insufficiency that has developed (I had a DVT during second round of chemo). Arthritis pain is BAD and becoming almost constant. Vaginal stenosis. Balance is a joke. Circulation, energy, functioning mind, ahhh, I don't know any more.
Like everyone else, YES, I am so grateful to be alive. But I don't know what to say to people who ask about my health either. I am supposed to be FINE now. If I make any mention of issues, some people have let me know (very quickly) that I am ungrateful. So, for the most part, I just say I am fine and walk away. And frankly I feel more alone all the time because of that. Posting on this thread was a good small step away from that...THANK YOU Rob in PA

Jean
Dx Rectal Cncr 5/12
Stage III
5 weeks Chemo (5FU) & Radiation completed
LAR with temporary ileostomy 9/12, complete response
Began FOLFOX 10/12. oxil reduced after tx 1, eliminated after tx 2. Now 5FU.
Finished 1/13
Ileostomy reversal 5/13

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Rob in PA
Posts: 1965
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Tue Jan 19, 2016 12:56 pm

jean60 wrote:
Rob in PA wrote:Thank you all for posts...definitely makes me feel I'm not alone..butt not in a good way.


Rob in PA, thank you for this post that I have read through several times now. This is one that makes me feel I have something to add and makes me feel that I am not alone. I get the sense from reading others' responses that you have accomplished that for a lot of others.

I've had two cataracts, one fixed. One eye that waters like crazy..they tell me that's from dry eye. ?? Worst is the neuropathy in my feet that just gets worse, the venous insufficiency that has developed (I had a DVT during second round of chemo). Arthritis pain is BAD and becoming almost constant. Vaginal stenosis. Balance is a joke. Circulation, energy, functioning mind, ahhh, I don't know any more.
Like everyone else, YES, I am so grateful to be alive. But I don't know what to say to people who ask about my health either. I am supposed to be FINE now. If I make any mention of issues, some people have let me know (very quickly) that I am ungrateful. So, for the most part, I just say I am fine and walk away. And frankly I feel more alone all the time because of that. Posting on this thread was a good small step away from that...THANK YOU Rob in PA

Jean


Your welcome Jean, I am glad I decided to start this post...even though I knew it would sound as if I am ungrateful to some , Couldn't be farther from the truth, I am soooo very grateful, butt need to hear from others that I am not alone with my feelings.

Take care all,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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kirac
Posts: 250
Joined: Sun Jun 09, 2013 10:34 pm

Re: Checking in.....STILL here, question for NED'ers

Postby kirac » Tue Jan 19, 2016 5:38 pm

Wow. So glad you posted this. Somehow I also thought when husband got to NED, it was "over" except if it came back. Well, that wasn't true because of all the symptoms from treatment. We/he still hasn't figure out what he can eat, what causes diarrhea/upset 2 years past treatment. In fact, this past Christmas, I threatened to divorce him if he didn't put some effort into figuring it out. It may sound harsh, but I was tired of him being tied to the toilet. I realize that he may be tied to the toilet for the rest of his life, and that's ok, but I wanted him to try and elimination diet, food journal and meet with the nutritionist that worked specifically with the colorectal cancer patients. I felt like I could not rely on him with our kids or even for myself - that I was doing everything.

He finally made an appointment after I asked him to for a year to meet with the nutritionist when he realized I was serious. I want him to try and figure out what he can eat for his health and sanity.

Our friends know about his limited diet and constant bowel issues but they don't really understand the extent. This doesn't include the neuropathy and memory issues :(.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

teachpdx
Posts: 578
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

Re: Checking in.....STILL here, question for NED'ers

Postby teachpdx » Tue Jan 19, 2016 11:27 pm

kirac wrote: but I wanted him to try and elimination diet, food journal and meet with the nutritionist that worked specifically with the colorectal cancer patients. .


I've been keeping a food journal on and off since my reversal. It can be really helpful. What has worked for me recently is making sure I have healthy carbohydrates to snack on if I start getting an upset stomach. They help absorb spices/fats/bad stuff I should not have eaten. Just a suggestion because I know everyone is different.
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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kirac
Posts: 250
Joined: Sun Jun 09, 2013 10:34 pm

Re: Checking in.....STILL here, question for NED'ers

Postby kirac » Thu Jan 21, 2016 11:05 pm

Thanks for the suggestions! You never know what might help so I appreciate all suggestions.
Last edited by kirac on Fri Jan 22, 2016 12:06 am, edited 1 time in total.
Husband (Age 36) 1/13 Dx Stage 3B rectal cancer
3/13 Chemoradiation
6/13 Tumor removed, Temp ileo, 1/15 nodes
7/13 Chemo = Oxaliplatin, Xeloda
1/14 Reversal
7/14 NED, CEA 1.8
12/14 CLEAR CT scan! NED

http://kickingasscancer.com/

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Nik Colon
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Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Checking in.....STILL here, question for NED'ers

Postby Nik Colon » Fri Jan 22, 2016 12:00 am

Most info in my sig, but I do have to say that my mental state has been worse since I ended chemo. Imo, I think I was just focusing on fighting, getting the surgery done and chemo, etc. Now the mental and physical side affects are plaguing me. I haven't been NED long, the constant scans/scanxiety (not knowing what they will/may/not find), trying to get myself back to somewhat normal, and like most understand, others not understanding that it's still not over even if "they" may think it is. Some people (family/friends) get the concept but truly don't understand and it gets frustrating at times which in turn makes you feel worse in a way. I hope my words come across as I intend (sometimes it's hard to put my thoughts into words that come out right).
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

PainInTheAss
Posts: 652
Joined: Tue Jul 02, 2013 3:08 am

Re: Checking in.....STILL here, question for NED'ers

Postby PainInTheAss » Fri Jan 22, 2016 6:20 am

Yes, I forgot to mention the mental changes.

I've had some close calls and near misses with distracted driving. I started thinking that it was just a matter of time before I actually got into an accident. Then I did. I totalled my car. My airbags didn't deploy but I was wearing my seatbelt so I just got some whiplash. Now I'm driving my daughter's car and she is understandably nervous when I drive. I'm "not allowed" to talk on the phone when I'm driving her car. I've always been a really safe driver but now I don't trust myself that much.

I was joking with my daughter about something and I said, "Your mom's a little retarded these days." It sure does seem like it. Chemo brain, for sure. Chemotarded.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

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LeonW
Posts: 263
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Checking in.....STILL here, question for NED'ers

Postby LeonW » Fri Jan 22, 2016 4:25 pm

Nik Colon wrote:. . . mental state has been worse since I ended chemo. . . think I was just focusing on fighting, getting the surgery done and chemo, etc. Now the mental and physical side affects are plaguing . . . trying to get myself back to somewhat normal . . still not over . . . Some truly don't understand . . gets frustrating . . makes you feel worse in a way.

Thanks Nik, well said. Think I'm in the same boat / similar state. Realizing that things will never be the same again. Bad memory, slow brain. Changed personality. Trying to find a new balance with my dear ones, with me less being able to contribute. Being on the receiving end of help more than I like / used to be. Realizing that the losses are permanent;that will last as long as I last. Adjusting to this new life, while looking recovered, ain't easy.

Looking at your sig, I believe I'm about a year ahead of you. Let's continue beating the demon even at these costs; let's also enjoy what's left.
Dec 2012 - Dx CC; MM @ 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, mets shrink from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, delirium, emboli, encephalopathy) Pathology: no cancer cells pCR (ypT0N0M0)
2014/15 - recovery; benign polyp Apr '15
Apr 2016 new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, May2017; next Nov 2017

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Checking in.....STILL here, question for NED'ers

Postby Nik Colon » Fri Jan 22, 2016 6:40 pm

LeonW wrote:Let's continue beating the demon even at these costs; let's also enjoy what's left.

I Agree! :twisted: :wink: :mrgreen:
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

ullefan
Posts: 28
Joined: Mon Apr 21, 2014 6:40 pm

Re: Checking in.....STILL here, question for NED'ers

Postby ullefan » Sun Jan 24, 2016 4:36 am

Can't read a thread like this and not post. I too have suffered as much in "victory" as I did during the "battle." The day the chemo ended, family and friends considered me "normal" or "cured." Sorry to say that has never been the case. Have not been able to hold a job and recover from the bankruptcy cancer caused me. Family thinks I'm "mentally ill" or a "hypocondriac." If I felt "normal" I don't think I would be scared of cancer. But, when you feel sick all the time it's hard not to think something is wrong with you!!! Nonetheless, I did have a "clean" CT and PET in April of 2015. So I push myself harder than ever (wishing to die with my boots on.) I try so very, very hard not to complain to anyone. Keep telling myself this is the "new normal."
And now for the darkness that is in my soul. I believe that my life will never be fun again--so why live? All I care about is serving others (that justifies staying above ground and using up healthy people's oxygen.) Luckily, my mother is 82 and in need of care. If I can't hold a real job, then what I do for her gives me reason to live. I simply CANNOT find any joy in what's left of this body/mind. I embrace "life is suffering" and "I'm here to help the normal human beings (the one's ignorant to the horrors of this world.)" Like I said, it's a dark place--but it keeps me from suicide.
DX 10/09 IIIb CRC 3/21 positive nodes
11/09-5/10 10rds. FOLFOX 4 rds. xeloda
5/11 NED
5/15 NED

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Rob in PA
Posts: 1965
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Mon Jan 25, 2016 4:28 pm

ullefan wrote:I simply CANNOT find any joy in what's left of this body/mind. I embrace "life is suffering" and "I'm here to help the normal human beings (the one's ignorant to the horrors of this world.)" Like I said, it's a dark place--but it keeps me from suicide.


Wow,I am so sorry things have not been going well for you ullefan. I get the "friends think I'm cured and back to normal" thing as im dealing with that also. I too tend to push things into the high risk category such as quad riding on dangerous trails,, running my backhoe where I probably shouldn't, electrical work even tho I'm not an electrician ...etc... just because of the whole "dying with my boots on" thing you spoke of. Butt, I manage, and I'm loving the life ive been given...just still have many bad days and nobody butt my wife and you guys "get it".
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Checking in.....STILL here, question for NED'ers

Postby Nik Colon » Mon Jan 25, 2016 8:04 pm

Life may be the same, but I can tell you, living with depression, anxiety, etc, most of my life...it's doable. I lost my bf to od and bro to suicide which made me think different. It's not always about us! Yes, life sux at times, many times, but if you have ever been on the other side of it you would know it's much worse. I don't always want to be here but I now know the pain it causes others.
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

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GreenMonkey
Posts: 333
Joined: Wed Jun 12, 2013 5:43 am
Contact:

Re: Checking in.....STILL here, question for NED'ers

Postby GreenMonkey » Wed Mar 15, 2017 6:10 pm

Hello Everyone,
I took a time-out from the forum because I needed to focus on a life without cancer butt... we all know that's not possible. Memory loss and neuropathy were my only real complaints until now... this constant urge to crap after eating is seriously cutting into my quality of life. I spend more time in the bathroom than I do in bed. This has been getting worse over the last 3 months. I don't know why. I recently had a colonoscopy (waiting on the results) and I was totally normal after the anesthesia. So... this tells me I just have to slow my system down. Does anyone know how to do that???

glad to see so many of you, miss those who are no longer here... :((((
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com


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