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Re: NEW-Need some positivity here.

Posted: Mon Oct 01, 2018 8:30 pm
by NHMike
teacher2017 wrote:Update- Onc said no chemo needed! She says my Cea is 1.5 and the committee said no chemo at this time. Next scan in December. Surgeon had clear margins and my blood work is good. I’m terrified. Not sure to be happy or waiting for the show to drop. I will now do anything and everything to keep this Ned status. I can at least breathe.


Hopefully you can get to the point where you can relax soon. It's good news for sure.

Re: NEW-Need some positivity here.

Posted: Tue Oct 02, 2018 12:37 am
by DonutHead
Relieved! Cannot tell you how happy I am for you, actually did a dance when I read the good news. Not getting the pump was a good decision and it sounds like you are on your way ro recovery! keep it up, keep getting stronger, and never quit or look back!

Re: NEW-Need some positivity here.

Posted: Fri Oct 12, 2018 8:42 pm
by teacher2017
DonutHead wrote:Relieved! Cannot tell you how happy I am for you, actually did a dance when I read the good news. Not getting the pump was a good decision and it sounds like you are on your way ro recovery! keep it up, keep getting stronger, and never quit or look back!


Moving forward and praying everyday! Being normal even for a bit feels so great!!!! Cherishing every moment....

Re: NEW-Need some positivity here.

Posted: Fri Oct 26, 2018 8:00 pm
by teacher2017
Stage 4 question- will I die with this stupid port in my body? Will it ever come out? Do any stage 4s ever have it removed? I’d imagine I’d be devastated to have to have it put in again... I hate it so much!!!!

Re: NEW-Need some positivity here.

Posted: Fri Oct 26, 2018 9:26 pm
by Cancerclan
It is not a death sentence. Your surgeon will examine thetumor plus they will biopsy lymph nodes to see what stage of cancer you have. Colon cancer is beatable. I am three years in remission. After surgery and chemotherapy for Stage 3 colon cancer. Have courage and go forward!

Re: NEW-Need some positivity here.

Posted: Sat Oct 27, 2018 12:53 am
by DonutHead
hi, teacher...

as you know, i had my report removed after the oxy, hated the thing and always reminded me of the ordeal. i now have a lucky horseshoe tattooed on my chest over the area. All of my bloodwork is drawn from my arms as is the dye inserted for scans. it really helped me get a new perspective having it out and i can always have it put back in if necessary (knock on wood).

Re: NEW-Need some positivity here.

Posted: Sat Oct 27, 2018 5:55 am
by Gravelyguy
I did not like my port either. It rubbed on my seat belt and reminded me every day of what I had been through so I had mine removed 2 months after my first official NED scans and 6 months after my last chemo.

If it comes back, I get a new one. In the mean time it feels great!

Dave

Re: NEW-Need some positivity here.

Posted: Sat Oct 27, 2018 6:04 pm
by NHMike
Gravelyguy wrote:I did not like my port either. It rubbed on my seat belt and reminded me every day of what I had been through so I had mine removed 2 months after my first official NED scans and 6 months after my last chemo.

If it comes back, I get a new one. In the mean time it feels great!

Dave


How long does it take for the wound to heal up? The ostomy wound has closed up a lot faster.

Re: NEW-Need some positivity here.

Posted: Sun Oct 28, 2018 6:00 am
by DonutHead
It took me about 21 days to heal completely once removed. It's been about 7 months since removal and I can still feel the void if you will, in the area where it was initially inserted.

Re: NEW-Need some positivity here.

Posted: Sun Oct 28, 2018 7:17 am
by Gravelyguy
I was swimming a week later. But I can still feel where it was today. The procedure is not too big of a deal. It was done in the surgeon’s office and I drove home afterwards.

Dave

Re: NEW-Need some positivity here.

Posted: Mon Oct 29, 2018 7:14 pm
by teacher2017
I can only hope that one day i will do it. I think it’s rare that stage 4 peeps remove them.

On a different note, has anyone taken milk thistle after resection? And is having some annoying pain there normal? Like soreness? Just worried when there is any bit of pain anywhere...

Re: NEW-Need some positivity here.

Posted: Mon Oct 29, 2018 7:58 pm
by Lee
There was a person who was diagnosed stage III, had her port removed soon after finishing treatment. At some point, she had a met. When they put the port back in her, she had problems with scar tissue. Did not work. They finally had to take port out and put it in on the other side. She decided that one was not coming out.

I had to wait 2 yrs after finishing treatment before I could get my port removed. I'm sure it's possible to get the port removed after a certain period of time in NEDville. I was not in a hurry to get mine out. My insurance denied it the first time. Onc was going to have a conversation with my insurance company. FOLFOX was experimental when I started getting it. And ports were not a normal item. I took my first infusion in my left hand and had to carry my 5FU on a pole around with me for those next 2 days. I had to sleep on one side of bed out of fear of pulling the needle out of my hand.

If I was the passenger in the car, I put the shoulder strap behind me when I had my port in. I could not handle it across my neck. The word painful was the only way to describe that strap rubbing again my tube inside my neck

Congratulations on your successful surgery, and may you ALWAYS reside in NEDville.

Lee

Re: NEW-Need some positivity here.

Posted: Sun Nov 25, 2018 6:50 pm
by teacher2017
Ok folks-
Scan on Dec. 1 and results on Dec. 4. The scan fear is real. I feel fine but get some aches and pains by the liver and back and sometimes lower. Not sure what it is but of course, I’m making myself nuts. Praying I’m NED. Thoughts have made me crazed- worrying I’ll need more surgery or folfiri which may make me go bald. Worried that this will affect my job and anticipated retirement at 55...which I may never see. Just think this whole thing is a nightmare. The most vicious one you can muster. Just asking for prayers this week. I’ll keep you all posted. Hoping you are all well and enjoyed your thanksgiving!

L.

Re: NEW-Need some positivity here.

Posted: Sun Nov 25, 2018 6:58 pm
by cartech78
teacher2017 wrote:Ok folks-
Scan on Dec. 1 and results on Dec. 4. The scan fear is real. I feel fine but get some aches and pains by the liver and back and sometimes lower. Not sure what it is but of course, I’m making myself nuts. Praying I’m NED. Thoughts have made me crazed- worrying I’ll need more surgery or folfiri which may make me go bald. Worried that this will affect my job and anticipated retirement at 55...which I may never see. Just think this whole thing is a nightmare. The most vicious one you can muster. Just asking for prayers this week. I’ll keep you all posted. Hoping you are all well and enjoyed your thanksgiving!

L.

I think your gonna be just fine. I wish I had your signature line. Im working torwards it. Besides the odds are even if it did come back it would probably be small enough it could be easily abilated. Wishing you the best.

Re: NEW-Need some positivity here.

Posted: Mon Nov 26, 2018 5:16 am
by DonutHead
I was thinking if you today and how you were getting along. My first scan was a bit nerve wracking, but fortunately I got through it, as you will. One thing is for certain, we are ALIVE! 30 years ago, maybe not so much. I have learned alot from this ordeal...

not to worry...nothing I can do until I can do something...love those around you, tell them and often...i did before, but bow it is even more important...don't get down, it breeds pessimism...i certainly did after being diagnosed, but life is short and no matter how i go, i want to know that i gave it my everything...be strong, especially when you are not, for those who love you...fake it until you make it essentially.

I get pains too, up near my liver, lower left side where i had my simoid colon removed...but then i think i am more in tune with my body then ever before and that i am feeling what was always there...i just actually notice now.

i have my finger and toes crossed for you, for myselves and others living through this...key word is living. i sometimes forget, even for a second, my ordeal...and it is exhilerating. if it comes back, what can i do other than keep my head up and fight for my family. i do believe deep down that you will be okay, no matter what.

please let me (us) know how your scans go. hope you and your family had a happy thanksgiving and are looking forward to Christmas and ticking off another year in 2019!