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

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

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

Postby Rob in PA » Wed Jan 06, 2016 5:29 pm

Hi all, other than a rambling Ambien induced post back in November, I haven't posted at all other than a couple random responses to other posts here and there.

Scans coming up in February and the scanxiety is already creeping in (ugh). I am thrilled to have been around to spend my NINTH Christmas with my wife and two wonderful kids since my diagnosis in November 2007.

While I am extremely thankful to currently be NED, it does not come without an asterisk attached to it.....which, I guess is part of the point of my putting this post out there. For those currently in treatment and praying for the day that you are NED like me, please do not interpret this post as me being ungrateful, rather, this is just another great part about this forum in that those that are current patients, former patients, family, friends can come here for valuable insight.

So, getting back to the point I was about to make....Is there anyone else out there who is currently NED but going through a "mini-hell" daily due to effects from years of chemo/surgeries/etc? And, if so, do you find yourself in a "gray" area between treatment and total cure where it is difficult to explain to casual friends that, while I am NED, I have the cancer gift that keeps giving painful/uncomfortable reminders every day that render me unable to function normally?

I find myself more and more giving the typical "I'm fine thanks for asking" response and moving on, butt wonder if they REALLY would understand what I'm going through. They mean well, butt have no idea what we go through. It's not like I got a nasty compound fracture in my leg while skiing and everyone is concerned for "x" number of months till you heal up and then you are back to a clean health slate. Sorry, it doesn't work that way for me. LOL!

Hope all the best for everyone this year.

Fightin the fight.

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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Bev G
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Location: Quechee, VT

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

Postby Bev G » Wed Jan 06, 2016 5:57 pm

yes, Rob. "Cured" butt hopelessly changed. Like you, I am so grateful. However, I'm working on losing the shame associated with complaining about being rendered largely useless thanks to the chemo. Neuropathy, no balance, frequent falls, bilateral cataracts, diffuse cerebral atrophy and its attendant defects. About a month ago I had a stroke in my left retina, and have permanently lost the upper horizontal 1/3 of my vision in my left eye. Who knows if that is chemo related? I have been referred to the stroke clinic at Dartmouth next week. My kidneys are having a problem now with leaking a lot of protein...butt that could well be diabetes related. It just seems like stuff is really piling up. Still, I'm so thankful to be alive. I'm glad you're alive too, Rob.
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

Ron50
Posts: 595
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Wed Jan 06, 2016 6:37 pm

Hi Rob,
I understand the question. 22nd of this month will see me 17 years free of cancer. That is the plus side. The minus side. I have an unknown auto immune disease of the kidneys causing nephrotic syndrome. Untreated I lose up to 7 grams of protein a day thru my urine. Untreated it will kill me. I have auto immune peripheral neuropathy of an unknown type and cause. Because it is unknown neurologists refuse to treat it. I have auto immune psoriatic arthritis. I have up to 10300 premature ventricular and atrial ectopic heartbeats a day. My cardiologist does not know what is causing it . He does not wish to see me again . He stated that if it has not killed me during the two years he was doing tests , it probably won't . He has offered no treatment. My nephrologist has confirmed that I have auto immune hepatitis . My liver functions are always elevated. He prescribed a short hit of prednisone to go with my twice daily cyclosporine. All liver functions returned to the black. I have type two diabetes. I have it thanks to my first nephrologist treating what he thought was minimal change disease of the kidneys with 75 mg daily of prednisone for 18 mos with an extra 5 month taper. It not only gave me type two diabetes it caused severe calcium loss to the point that I lost 7cm in height and developed cracks in my lower spine (pars fractures) I have been put on 80mg of targin (oxycodone/naloxone) for the pain. It has been two years and the pain is worse so I am on a 32 week witdrawel from targin. I have had three kidney biopsies to confirm that they don't know what my kidney problem is. I have had bone density scans and sit now in the osteo-penia range. I have an unknown auto immune endocrine problem. I have low testosterone. My endo has suggested that hormone replacement is not a good path for me as I also suffer from benign prostate enlargement. During the 17 years I have survived I have taken panadol osteo- useless. Sulfasalazine -severe diahorreah .100 mg daily of cyclosporine It keeps my protein loss steady at 1 gram a day. for pain and neuropathy -Neurontin, lyrica ,endep, norspan patches, fentanyl patches ,targin - caused hypo-algesia . naproxyn 750- the lowest dose nsaid my nephrologist is game to let me use. zyloprim for uric acid, lescol for cholesterol. For totally erratic blood pressure I take daily two/ 1 mg cardiprim 1/ 240 mg diltiazem 1/ 80 mg micardis 1 /40 mg lasik . I take bp daily and keep a record for my neph. On new years eve I was 127/78 on new years day I was 152/125. I don't drink or smoke or take anything but prescribed drugs . I stick to a low gi/Mediterranean diet . I take 1000 mg a day of metformin for the type two diabetes and am well controlled. My wife asked me to leave ten years ago. She got tired of my continual illness and sexual dysfunction. I have lived alone for the past ten years. I was dxed in 1998 with aggressive stage 3c colon cancer into 6 nodes . I had 48 sessions of 5fu enhance every second week with Levamisole - banned in 2001 for human use because of often fatal side effects. In summary -Surviving survival has not been easy , it has been painful and sickening. I continue to work even tho I qualified and was given an age pension at 65. At least at work If I drop of the perch someone will notice. Good luck to you and your family Rob . I hope the scans go ok. (I have had ten colonoscopies and ten endoscopies as well as numerous scans, heart holter monitors , ecg's and stress tests as well as sleep studies. In rem sleep oxygen saturation drops below 80% so I am on cpap as well.) Cheers Ron, Sunshine coast Qld Australia.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Maggie Nell
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Location: Melbourne, Australia

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

Postby Maggie Nell » Wed Jan 06, 2016 8:34 pm

Bev G wrote:yes, Rob. "Cured" butt hopelessly changed. Like you, I am so grateful. However, I'm working on losing the shame associated with complaining about being rendered largely useless thanks to the chemo.


I have a serious question. How is it that a shame association exists with simply describing how one feels about
the impact this experience has had over ones life? Where does that come from....I have noticed this across the
board, in scores of posts the archives, written by past members. So many share their experience with the disclaimer
"sorry, don't mean to offend others who have gone through worse"

Is that a form of cancer PC or something more entrenched and intergenerational filtering down?
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
deranged LFTs April 2017

ams5796
Posts: 2219
Joined: Fri Feb 06, 2009 10:07 am

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

Postby ams5796 » Wed Jan 06, 2016 9:02 pm

Rob, I could have written that post. I'm having a scan in February and scanxiety is creeping in now. I was diagnosed in January of 2007 so it's officially been nine years. Nine years ago I didn't know if I'd be here especially after the recurrences in my lungs a few years later. Not only am I here, but I'm going to my daughter's wedding next week. She's getting married in Hawaii. I am so grateful to see her get married. I wasn't sure how many milestones I'd be around for, but I've now seen many with my three children. As far as side effects go, I'm scared silly about this trip and the wedding in Hawaii. How will I handle a fourteen hour flight from Boston. I'm going to try to make the daily enema work for this trip, but that's stressful in itself. That's the worst side effect, but there's lots of breathing issues and neuropathy to worry about too. I'm really hoping I can just go, be in the moment, watch my girl get married, and enjoy a family vacation in Hawaii. A bucket list item for sure.

Good luck on your upcoming scan.

Ann
Stage 3C Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14

JDinNC
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Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

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

Postby JDinNC » Wed Jan 06, 2016 9:30 pm

Ron,

I guess I shouldn't complain as my physical side effects are nothing compared to others. I learned just before Christmas that I'm still NED after 2.5 years. Though this doesn't give me much comfort...because I know that this cancer will get me somewhere down the road. What upsets me the most is how family and friends think I'm cure and when I say anything about my health they tell me I'm so negative. Nobody wants to understand what this cancer does to the physical and mental state of the patient. My husband's New Years resolution is to slap my hand whenever I say anything negative about my cancer...As he put it, we won't talk about it and when my time comes we will deal with it then.....REALLY!!! He has a very bad back and needs to have surgery using pins and rods but refuses to have it done because of me. He can't bend over, can't stand for long, is always in pain and doesn't sleep well. I now worry about him because what will he do if I'm gone, who will care for him because things will get worst for him. So I've been trying to clean and toss crap because I don't know where I'll be in the coming years. And knowing the shape my husband is in...this place will fall apart once I'm gone. Since New Years, I've been painting the inside, climbing a 25 foot ladder to paint my high walls. Which is a feat in itself with the neuropathy in my feet, they are numb up to my ankles. I'm starting to lose my balance and have slipped outside hurting my knee, I get "washes" of anxiety thoughout the day for no reason and have hot flashes, high cholesterol, high blood pressure, osteopenia, and melanoma. Butt for me it's the mental and emotional stress...trying to get everything in order for my family so they know what needs to be done...marking family heirlooms along with their stories, get papers in order and dispose of useless items. Boy, how I wish I lived in a tiny house...
Butt I'm learning to live one day at a time...yes.. I'm so thankful just to be alive and not complaining about that at all..lol

Best to everyone in 2016...stay strong and let's hope for that cure!!!


Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
FOLFOX with avastin
7/15 two years...NED
7/16 three years ...NED


MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discounted treatment

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Rob in PA
Posts: 1947
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Wed Jan 06, 2016 11:02 pm

Bev G wrote:yes, Rob. "Cured" butt hopelessly changed. Like you, I am so grateful. However, I'm working on losing the shame associated with complaining about being rendered largely useless thanks to the chemo. Neuropathy, no balance, frequent falls, bilateral cataracts, diffuse cerebral atrophy and its attendant defects. About a month ago I had a stroke in my left retina, and have permanently lost the upper horizontal 1/3 of my vision in my left eye. Who knows if that is chemo related? I have been referred to the stroke clinic at Dartmouth next week. My kidneys are having a problem now with leaking a lot of protein...butt that could well be diabetes related. It just seems like stuff is really piling up. Still, I'm so thankful to be alive. I'm glad you're alive too, Rob.

That's what I'm talking about bev, thanks
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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Rob in PA
Posts: 1947
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Wed Jan 06, 2016 11:10 pm

Thank you all for posts...definitely makes me feel I'm not alone..butt not in a good way.
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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Rob in PA
Posts: 1947
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Wed Jan 06, 2016 11:12 pm

Ron, ditto what you said. I
wish best for you
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

Ron50
Posts: 595
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Thu Jan 07, 2016 6:58 am

Thanks Rob and my best wishes to all who bared their souls for this post. One of my biggest hangovers with the aftermath of cancer is the feeling of helplessness. I was one of those people who could do just about everything to some degree and if anything needs fixing I would fix it. Now I can't ask for help! I have a 4wd tray back ute. All of the belts in the motor needed changing. My boss's husband is a mechanic as well as her son in law. It just didn't seem right to ask for help. So I did it all myself. It took the best part of a week before I didn't feel like crap. So I did the same with doing an oil change and changing all of the filters. Man I am flat out getting the lid off a jar let alone an oil filter in the bowels of the engine. I reckon it took two weeks to get over it. Marty my boss's husband said I should have called he would have done it for me. I had asked him three times in the past year to do the belts and the filters. He always found an excuse not to do it but because I give up and do it myself at a cost I am the fool. I was not asking for charity I was willing to pay for the work. Do people think that we will become a lifetime commitment if they do something for us. I just can't seem to get it across that because I no longer have cancer I am all better. Sometimes and a lot more of late I wish fervently I hadn't survived cancer. It was a clean way out sure I would have had to endure the pain of dying but now I have to endure the pain of living.Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Rob in PA
Posts: 1947
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

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

Postby Rob in PA » Thu Jan 07, 2016 11:42 am

Ron50 wrote:Thanks Rob and my best wishes to all who bared their souls for this post. One of my biggest hangovers with the aftermath of cancer is the feeling of helplessness. I was one of those people who could do just about everything to some degree and if anything needs fixing I would fix it. Now I can't ask for help! I have a 4wd tray back ute. All of the belts in the motor needed changing. My boss's husband is a mechanic as well as her son in law. It just didn't seem right to ask for help. So I did it all myself. It took the best part of a week before I didn't feel like crap. So I did the same with doing an oil change and changing all of the filters. Man I am flat out getting the lid off a jar let alone an oil filter in the bowels of the engine. I reckon it took two weeks to get over it. Marty my boss's husband said I should have called he would have done it for me. I had asked him three times in the past year to do the belts and the filters. He always found an excuse not to do it but because I give up and do it myself at a cost I am the fool. I was not asking for charity I was willing to pay for the work. Do people think that we will become a lifetime commitment if they do something for us. I just can't seem to get it across that because I no longer have cancer I am all better. Sometimes and a lot more of late I wish fervently I hadn't survived cancer. It was a clean way out sure I would have had to endure the pain of dying but now I have to endure the pain of living.Ron.


Interesting thoughts. Yes, this "gray" area we are in is both psychologically and physically challenging for sure. We have the physical impacts from cancer that remain (my main issues are bowel incontinence so I'm glued to toilet every morning till I feel i'm evacuated enough to go out for the day, the neuropathy is still killer for my feet and little bit in my hands, the right side of my diaphragm was paralyzed from SBRT treatment so while even though I have 1/2 of my right lung left after VATS surgery, I still don't get full use of it because of diaphragm, so I get winded very easily) and then there are the psychological impacts (I worry what people think of me, such as [do they feel pity, do they think i'm imagining all my problems, do they think I should have just died so life could go on, etc], I worry about those on here just starting the journey, I worry about recurrence and knowing what all I've gone through and shudder at the thought of doing that again...and on and on. And yes, Ron, sometimes I do wonder if maybe it would have been best to just pass on and let my family get on with their lives. :cry:

So, if you are reading this and not NED, don't despair, and don't get me wrong, I am very grateful and proud of the fight I put into getting to this point....butt it is not all Peaches and Cream in NEDsville so be prepared to remain STRONG in a whole other way.

Best,
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

Ron50
Posts: 595
Joined: Fri Feb 10, 2006 7:04 pm

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

Postby Ron50 » Thu Jan 07, 2016 4:45 pm

Thanks Rob. and I apologise to those in treatment, I did not intend to try to put any one off survival it is not in our nature to just give up. My thanks are because I truly wondered if anyone understood. I can see in your words and the feelings they convey that you do as does Bev. I don't explain my life to anyone anymore and I wondered If I was just being an ungrateful A hole. Thanks again. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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

Postby vilca11 » Thu Jan 07, 2016 5:48 pm

Guys, what a great thread - sad, but truly shows what a true nightmare our disease is... Thank you all for opening your heart and sharing your feelings here... Yes, cancer never stops with NED, especially for those who got to that NED at a very high price in a long torturous battle...

Bev, Rob, Ron - my heart goes out to you, my dear fellows, your posts are just heartbreaking.... "gift that keeps giving" it is... In some ways, I think, it is even harder from a mental standpoint to be in the NED status - when you are going thru treatment, you are kinda in the action, you are fighting, you are with other unfortunate fellows, you have compassion, care, help from family and friends... But when you are in the NED - you are alone with your past experience, you are back to "normal" crowd and are treated as such, without any consideration of what that disease did to your psycho and body, what fears are overwhelmingly, but methodically are killing your life... and you are WAITING ALONE, consciously and subconsciously, WHEN that horror will start again or HOW to live with your heavily wounded "new" body... And we know from just normal life, that waiting is in many ways worse than knowing... Who would understand that if they did not go thru what we had gone? It is natural, that no one would... Only their own experience, God forbids...

Warmest hugs and love to all of you, hang in to good thoughts, the hell with it all, after all - just one short life of ours... 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

weisssoccermom
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Location: Pacific NW

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

Postby weisssoccermom » Fri Jan 08, 2016 3:39 am

Oh, I understand all too well how you are feeling. I've not had all the surgeries, treatments, etc. that so many others have had but thanks to chemo, I find myself with a severe dry eye problem that nothing seems to help. Everywhere in this house are these little empty vials of eye drops....all due, according to the opthamologist, from the effects of 5FU (which, btw, no one ever bothered to tell me about). I get angry that my eyes HURT....and I mean HURT. Doc has said that this severe form of dry eye is actually damaging my eye...nothing horrible right now but still....it pisses me off. I can only use one specific type of drops....not RX but difficult to find and very expensive. My world now revolves around making sure that I have packages of these drops everywhere....in my purse, in my pocket, in my car, on my nightstand, on my desk....I literally mean everywhere.

As I type this, I have a TENS machine attached to my right hip/buttocks trying to deaden the pain that radiation has caused me. Sometimes, when it flares up, it hurts to sit, to lay down....basically to do anything. Right now, the pain is awful and yet I feel guilty for not being happy. I NEVER had problems like this before diagnosis...and while I truly am grateful that I am alive and have been able to live life....I've seen my youngest graduate not only HS but college....I'm TIRED of times feeling like crap and hurting. I'm fed up with having to have physical therapy for the hip/sciatic nerve problems that were caused by the radiation. The scar tissue in my neck from the placement of the port has sent me back to PT once again...and it's painful. What is worse, however, than the physical pain is the anxiety/emotional pain I get when my body betrays me....I worry that diarrhea that lasts more than a day is indicative of a recurrence...even 9 years later. I still find myself turning around and staring in the toilet after each BM....'just to make sure' everything looks normal. Seriously, what type of a person does that? I would venture that most people who haven't been diagnosed with colorectal cancer don't give a second thought to looking at their poops in the toilet. For me, there's also a sense of guilt....why me? Why did I survive and others not? Is there a reason for this? Is there something that I am supposed to do? I've tried to talk with some friends about these feelings/questions but they don't understand and seem to think I'm nuts for thinking this way so I just keep it to myself.

People don't ask anymore how you feel...they just assume that everything is ok. No one even bothers to realize that when I have one of my checkups I am nervous and I sometimes wonder what they would say....how would they react if the cancer came back after all these years??? I am extremely self conscious of the fact that my hair never really came back like it was pre-chemo - it used to just be 'normal' but now it is very thin and I try to hide my anxiety about it around most people but have let a few people know about it. A few months ago, one of my best friends found out she has stage IV lung cancer (never was a smoker) and there is nothing they can do. I have watched her battle bone mets throughout her body and listened to the despair in her voice when she realizes that she will likely die this year. Her pain is unbearable and I can't even imagine what she must be going through. I posed a hypothetical question to Vicki one day. I asked her IF the docs could guarantee her that some drug would guarantee her another 15 years of remission but she might have to go through 15 months of H**L to get there....would she do it? Seemed pretty likely, IMO, but her response shocked me. She said she didn't think so because she knew too many cancer survivors who were survivors but who were battling the long term side effects of their treatments and she wouldn't want to do that to her body or to her family. Honestly, I was floored by her response but, sometimes I can see where she is coming from. It's hard to not be thankful for your life and I rarely share my frustration and anger at the seemingly petty and bothersome side effects from the treatments because people don't understand.

So yep, I do understand....today probably more than other days.
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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dianetavegia
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
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Re: Checking in.....STILL here, question for NED'ers

Postby dianetavegia » Fri Jan 08, 2016 7:44 am

Yesterday was 7 years since my original surgery and my scans aren't until the end of March tho my mammo is Jan 18 th.

My neuropathy seems worse daily which makes me wonder if I'll be able to walk in 10 years.

Like Bev says , it changes you.
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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