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

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dianetavegia
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Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Checking in.....STILL here, question for NED'ers

Postby dianetavegia » Wed Mar 15, 2017 7:34 pm

I'm still 'here' just don't post much anymore.
My neuropathy has moved from feet and ankles up to the top of my thighs. I have mechanical allodynia, also called tactile allodynia where light touches like a breeze, a sheet, lightweight pj's make my legs hurt like a bad sunburn. Grab them, slap them, no discomfort, only the gentle touch. My hands are still asleep, too.

I identify with the problem with driving. I don't feel like I'm a safe driver anymore, tho the only accident has been when a high school football player ran a stop sign and turned in front of me. No one was injured and he was ticketed. I had $4,000 damage to my car, tho.

I suffer from constipation. My colonoscopy doesn't show any concerns but things move too slowly so I take stool softeners every day and have gas all the time that's not controlled.

Ah, the anxiety. The first 2 years after my liver resection were horrible. I would sometimes go to the walk in clinic 3 times a week for imagined illnesses. My GP put me on a low dose of Klonopin and I've remained on that, same dosage, for 5 years now. The only time I have a hard time is just before test. I had my MRI on Monday and everything was fine. I'm due for my chest CT in 2 weeks.

I started going to the gym 3 days a week and was pushing myself, doing 2 or 3 one hour classes of aerobics and cardio each day. Three days I had pink urine. I know that aspirin and intense exercise can cause that, but my grandfather died of bladder cancer so I did see a urologist. I had an MRU on Monday which came back perfect and I'll have a cytoscopy next week, but expect it to be fine, too.

I'm 5 years out since my liver resection and 8 years 2 1/2 months since my original Stage III dx. I'm Stage IVa and other than high cholesterol that came out of nowhere, dry eyes, sinus problems much of the time (5FU), constipation, anxiety (CDPTSD), neuropathy, wobbly legs and loss of interest in any hobbies....... always a blah mood, laughed maybe 2 times in 8 years........... severe vaginal stenosis/ atrophy (no radiation or surgery in that area)....... the list goes on.

I am thankful to be alive but I wish I enjoyed life like I used to. I feel like I've wasted 8 years or at least the last five. What's really crazy is, my gym instructor is a 45 year old man, former military, and he says and told my husband that I'm the happiest person he's every met. I think the only time I feel 'normal' is when I'm working out.

Diane
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

NED April 2017 Eight yrs, 3 months since original dx. Five yrs. NED post liver resection.
“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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GrouseMan
Posts: 719
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

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

Postby GrouseMan » Wed Mar 15, 2017 8:21 pm

Welcome back Green Monkey - Its been a long time. I was hoping you were doing OK. Liked your post about the bidet at Burning Man. Anyway - as you know they often use atropine to slow things down when you are treated with irinotecan. Atropine is an Anticholinergic of which there are many examples available on the market via prescription. They are used to treat many conditions some of which might interest you - gastrointestinal disorders, such as diarrhea, overactive bladder, and incontinence. They usually prescribe these for COPD, and overactive bladder. Have you talked to your GP about what he may suggest? An over the counter incontinence drug might give you some relief also or at least a start to see if one of these might work. I read that Hyland's EnurAid contains a small amount of belladonna which is also an Anticholinergic, low does might do the trick, or if you can talk your GP into prescribing a prescription one to test the waters maybe?

In the case of colon cancer patients some creative imagination might be necessary. You have probably lost some length of colon. So the whole waste processing apparatus is shortened, less absorption of water from the colon so there is always a likely hood of more diarrhea. Things like Rheaban (contains magnesium aluminium phyllosilicate) and Kaopectate (contains Bismuth Subsalicylate) are adsorbents and may help to bind things up some, but that I don't believe is your problem. You need to slow things down. I assume you have tried Imodium? They sometime give you that in prescription form as Loperamide when you are getting FOLFOX and FOLFIRI. That might help but you likely will need to take more than what the box says. - its a used to treat short bowel syndrome which of course is really what many end up with when they have a colon resection! Loperamide is a different kind of drug than the anticholinergic drugs - its actually an Opioid but is not a narcotic. Usually when you are in CRC treatment they let you take as much of this stuff as you need. You just need to be careful not to put yourself in the opposite situation of constipation. It sort of starts to put your colon to sleep if you will.

Here is a link to Loperamide: https://en.wikipedia.org/wiki/Loperamide

Another to short bowel syndrome: https://en.wikipedia.org/wiki/Short_bowel_syndrome

And another about anticholinergics : https://en.wikipedia.org/wiki/Anticholinergic

Have a frank talk with your GP. He should probably know that the adsorbents are not going to work all that well. But maybe Imodium or one of the anticholinergic agents will.

Good luck too you.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

behconsult
Posts: 217
Joined: Fri Jul 04, 2014 4:53 pm

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

Postby behconsult » Thu Mar 16, 2017 6:31 am

Rob, Glad you are hanging in there. Your posts in the past have been helpful to me. What you say makes perfect sense. Some people really want to know how you are doing and do so from the heart, others want to satisfy their curiosity which is the human nature element, and others like to report the "car crash" on the highway to other people because it makes them feel different about themselves briefly when they have a morsel of new gossip. Discerning which camp a person is coming from at that given time is the key and giving the appropriate response for them that matches is central.

Chemo sucks. My onc comes in upbeat that my labs look good on chemo and that in her view I am handling it well. My perspective is it is rat poison and I am a rat. I am grateful for everything but it is still a zero sum game. Cancer has changed me in many ways for the better, but physically and medically, aside from being alive which is no small feat, it is mentally, emotionally, and physically costly. Bob
Stage 3B Age 52
T4; 2/16; spot on perit
Resctn 6/9/2014
Folfox strt 7/2014. 6 of 12 tx
Chemo induced DM2
Pet 4 mets to lung (1 cm, 6 mm) Xeloda/Avastin 9/16 to present.
Cryo-ablation to three spots- Collapsed lung/chest tube 5/17. One more spot to go.

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Rob in PA
Posts: 1969
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Sat Mar 18, 2017 12:52 am

behconsult wrote:Rob, Glad you are hanging in there. Your posts in the past have been helpful to me. What you say makes perfect sense. Some people really want to know how you are doing and do so from the heart, others want to satisfy their curiosity which is the human nature element, and others like to report the "car crash" on the highway to other people because it makes them feel different about themselves briefly when they have a morsel of new gossip. Discerning which camp a person is coming from at that given time is the key and giving the appropriate response for them that matches is central.

Chemo sucks. My onc comes in upbeat that my labs look good on chemo and that in her view I am handling it well. My perspective is it is rat poison and I am a rat. I am grateful for everything but it is still a zero sum game. Cancer has changed me in many ways for the better, but physically and medically, aside from being alive which is no small feat, it is mentally, emotionally, and physically costly. Bob

Nailed it, thanks bob-! U 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

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Tue Mar 21, 2017 4:09 am

It's been over a year since my reversal and I am a hermit. I honestly don't leave the house unless I absolutely have to and then I take Immodium, (which will mess me up for days) and I pray it works long enough for me to do what I need to do. Before cancer, I was very active and traveled a lot. I'm a writer, so I not only traveled for fun, but also for signings and book conferences and to conventions for my husband's business. I threw large parties for business where I did all the cooking and baking for over a hundred people and I was very good at it. Now, I can barely make dinner for three of us a couple times a week.

There is no predictability to my bowel movements. I've kept logs and journals and charts and I've figured out one thing---my body is going to do whatever the hell it wants to do no matter what I eat or drink. And no matter whether the stool is soft or hard or liquid, it will cause great pain as it irritates the scar tissue left from the surgery and the radiation. Sometimes my worst times are during the night, sometimes it's during the day, and it always seems to be bad during dinner and immediately after, which makes it difficult to enjoy time with family or friends who have come to visit me since I can't visit them.

I had one infusion of Folfox which caused such a severe reaction in my body that I wasn't allowed to have any more. My single infusion was in December of 2015 and my blood levels still haven't returned to normal. Eight of them are still out of whack, including my iron stores, which just won't seem to go above 12% even though I've been taking iron supplements for a year. I have one or two days a week when I have some energy and ambition. The other days are struggles to even get out of bed. And who wants to get up anyway when standing makes the stomach cramping and the feeling that you have to go come on stronger? But I do get up and I try to do as many as I can of the things I used to do around the house before I got sick. I had four major abdominal surgeries before all this cancer stuff started and I always bounced back surprisingly quickly. I think the fact that I'm just not bouncing back is what is depressing me. I put on a good front for my loved ones, but then I cry in the shower where no one can see or hear me.

I need to visit the dentist. I need to set up weekly injections for the osteoarthritis in my knee. I'm supposed to visit a back surgeon and a specialist to repair bladder prolapse. How do you do all that when you are chained to the toilet? I still have numbness in my feet from the Folfox and I can't lift my right arm above my head because of a persistent pain in my bicep. I was told over and over it was from sediment in my port or my port pressing on a nerve, but my port has been out for almost a year and the pain is still just as strong.

A couple of weeks ago, I was going to the bathroom and suddenly felt a wave of heat rush over me. I felt like I had to vomit. I got up and walked to the bathroom sink to get a cold washcloth to put on the back of my neck and---blackness. I passed out, hitting my temple, ear and shoulder on the door frame and my head, knee, and hip on the tile floor. I've only passed out once before and that was when I had a fever of 105 with pneumonia. I asked the oncologist what could have caused it and he said your vagal nerve can be triggered by straining on the toilet and cause your heart to slow too much and then you faint. So now I have to worry that the thing I do twenty times each day can cause me to black out?? More fun.

And over a year after my LAR incision that came open finally healed shut, it has started oozing again and surprise---a black stitch has worked it's way up through my skin. Who knows what it's attached to or how long it is. I guess we'll just wait and see.

I don't know if it's the exhaustion of dealing with all of this, the seven rounds of general anesthesia I've had, or the chemo, but my brain is definitely not as sharp as it once was. I used to write full length novels and now I struggle to find the words to form simple sentences in conversations.

I am grateful that I'm NED for now and that my tests have come back with positive results since my LAR. I waited for a year for things to get better because everyone said there could be improvement up to a year after reversal. My year has passed and I guess this is as good as it's going to get. If I had another illness, I could decline invitations by saying I was still having headaches or was still too sore to sit for long periods, but when the reason you don't leave the house is because you have to poop twenty times a day and sometimes on very short notice, it's not information you want to share with every co-worker, business acquaintance, or your college reunion committee.

I'm going to re-read the reversal threads for the tenth time to see if there is any trick, tip, or advice that I missed that could help me. I'm going to try anything and everything that might help me get at least a portion of my life back. When I've exhausted all other options and daily enemas are all that is left, I'll try that. The only thing I won't do unless it's absolutely medically necessary is go back to having a bag. For me, with my paper thin skin and all the pain and raw sores it caused, that isn't an option unless I have no other choice to survive.

You aren't alone, Rob. There will always be people who have it worse than you do, but that doesn't mean you have to feel bad about sharing real concerns and issues. If a friend broke his arm, you wouldn't make him feel guilty if he complained about the pain just because you've had cancer, would you? We've all suffered here, from caregivers to members from Stage 1 to Stage 4. Pain is pain and whether it's emotional pain, physical pain, or psychological pain from this wretched disease, we've all had to deal with some portion of it. Talking about it is good. Look how many members, including me, have felt liberated to express feelings they've kept bottled up because you opened the door. Thank you for that.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

ozziej
Posts: 212
Joined: Thu May 21, 2015 8:35 pm

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

Postby ozziej » Tue Mar 21, 2017 6:59 am

Hey Judy,
So good to hear from you after all this time, though I'm sorry you're still having a rough time. I'm nearly 2 years out from reversal now and I just had to let you know that there can still be improvement between 1 and 2 years out. I can very much relate to the grief others are experiencing for the loss of their life as they knew it. I think that, as often happens, the technology gets ahead of things: in my case, it seems that performing a ULAR, though technically possible, needs far more thought as to the support infrastructure available afterwards. My experience was lots of focus on the stoma and almost zero focus on the aftermath of the reversal. Having said that, I have seen incremental improvement this past year so things are much better at the 2 year mark than they were at 12 months. Hoping that this will be the case for you too.
Jan
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

JudeD59
Posts: 726
Joined: Sun Apr 12, 2015 12:16 pm

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

Postby JudeD59 » Tue Mar 21, 2017 5:25 pm

ozziej wrote:Hey Judy,
So good to hear from you after all this time, though I'm sorry you're still having a rough time. I'm nearly 2 years out from reversal now and I just had to let you know that there can still be improvement between 1 and 2 years out. I can very much relate to the grief others are experiencing for the loss of their life as they knew it. I think that, as often happens, the technology gets ahead of things: in my case, it seems that performing a ULAR, though technically possible, needs far more thought as to the support infrastructure available afterwards. My experience was lots of focus on the stoma and almost zero focus on the aftermath of the reversal. Having said that, I have seen incremental improvement this past year so things are much better at the 2 year mark than they were at 12 months. Hoping that this will be the case for you too.
Jan


Thanks, Jan. Good to hear from you, too. And thanks for the encouragement. Good to know there can still be improvement after a year and I'm so glad you personally have had improvement. I think my recovery may also be affected by the fact that I had a previous bowel resection because of a total blockage (which makes things even shorter) and by all the adhesions I have from previous surgeries. Adhesions are nasty buggers.

I agree with you 100% about the support after reversal. The only advice my surgeon gave me in all my visits was to take Metamucil. No matter what I said I was having problems with, that was his answer. I could almost hearing him calling out, "NEXT!" He is a really, really good surgeon, but once he's finished cutting you, his work is done. When I told him that I was having significant pain every day, he said that was to be expected with the scarring. Gee, thanks. And my oncologist just wants to talk about my test results and blood levels. There really should be better followup after the reversal instead of just turning you loose to figure out what is normal and what isn't on your own. I'm really grateful for the skill of the surgeon who performed the LAR and got all the cancer, judging by my CEA's and CAT scans since, but recovery and getting back to as normal a life as possible should be important, too.

Basically, I don't want my whole life to center around poop anymore. Not a sentence I ever expected to have to write a few short years ago. Ah, the good old days of going once in the morning and not having to think about it again for 24 hours. Sigh. Some people look back wistfully at the glory days of playing high school sports or academic achievements; I long for the days of bowel regularity. Forget scoring the winning touchdown at the state championship game, just give me a good "one and done" poop and I'll be on cloud nine. :lol:

Have a wonderful week, Jan.

Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4

teachpdx
Posts: 583
Joined: Wed Jan 16, 2013 12:29 am
Location: Portland, OR

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

Postby teachpdx » Tue Mar 21, 2017 7:36 pm

Hi Judy. I'm sorry you're having such a difficult time. I agree with you about the post reversal lack of help. Some hospitals have a Bowel Management Team to help with the after effects. I think MD Anderson has one. I've had the same gastro doc for all my colonoscopies since my diagnosis & every time before they put me out I ask him, "So how's the bowel mgmt team coming. Told him I'd keep asking until they get one.

Seems pretty cruel NOT to have help & make us suffer. I think it's like reconstructive surgery after a mastectomy. Didn't used to be part of the protocol but now it is. Bowel mgmt after reversal SHOULD be part of the protocol so insurance will pay.
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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Rob in PA
Posts: 1969
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Wed Mar 22, 2017 10:28 pm

Judy, sorry for the experience you are having butt, yes, its something we need to open up about. I talk with you all about this more than my family because you all get it.

Best to 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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