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stage 4 question

nsichler
Posts: 18
Joined: Dec 2014

Any stage 4's out there that have been declared NED? I have multiples in lung and liver?

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

though I only had one liver met, so not quite in the same state as you are. 

You will find others here who are NED with multiply mets. 

In fact, if you go to this link  http://csn.cancer.org/node/290094  and read, you will find some who don't post here often. Especially read the post by plucky (page 2) who has had multiple mets to liver and lungs, and is currently 3 years NED. 

Keep the faith. You are doing well. 

Sue - Trubrit

UncleBuddy
Posts: 1019
Joined: Aug 2013

I thought NED is no evidence of disease. How can someone be NED but still have mets to liver and lungs? 

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

I did not word my post very well at all. 

I should have said that their are many here who have had (past tense) many mets, and are at the moment NED. 

I will try to be more careful with my wording in future. 

Sue - Trubrit

UncleBuddy
Posts: 1019
Joined: Aug 2013

I thought there was something I just wasn't getting. Thanks for clearing that up. I hope you're doing well.

Lin

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

declared NED ( two and sort of 3) times, let's hope 3 times a charm! Good luck, it's possible!

Easyflip/Richard

Steve444
Posts: 105
Joined: Sep 2014

I'm currently NED from stage iv with mets to liver.  Just chemo, no surgery as my liver was 90% tumors.

nsichler
Posts: 18
Joined: Dec 2014

Ned you are NED after 90% of liver mets. How many rounds of Chemo did u have? Were u on oxaliplatin thru it all?

Steve444
Posts: 105
Joined: Sep 2014

I was NED when I replied in Feb, but now have 12 or so tumors back in my liver.  To answer your question, I was on chemo for 14 rounds (stopped by choice, onc wanted me to continue) and then remained on Avastin alone for another 7 rounds until my BP got out of control (6 weeks ago) and stayed off in prep for SIRT next week.  I don't recall when Ox was stopped, but think it was probably around session 10 or so (when neuropathy moved from feet to hands and stuttering/mental fog got real bad).  Looking back at the scans, I think I exaggerated with the 90% number, it was probably more like 60%, the largest being 9cm and too many for the radiologist to count overall.  Anyway, Folfox (I was also using cannabis oil, cut out sugar, etc...) knocked out everything in my liver, lymph nodes and rectum (Also had a 9cm tumor there).  Activity was found again in March after being NED for 6 months, my CEA is now 3.4, up from 1.2 and I'm two groin pokes into the six for the radiation sphere treatment on my liver.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

and have been NED for over three years.  Because I have an unusual tumor type (carcinosarcoma) that grows faster than the one more commonly seen in colon cancer I have been declared cured (knock on wood about a million times).

However, I never had involvement in other major organs...all my spread was more localized, with a recurrence in the colon, and mets to the small intestine, utererus, peritoneum, and rectum.  Chemo didn't work, but surgery was able to remove everything.  So stage 4, but with an asterisk next to it, I guess.

Still, I was not expected to make it past two years, and here I am.  You just never know.

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

    Foxy(Virginia) at diagnoses had cancer in the colon and a met in her liver. She had colon surgery and a wedge resection of her liver. She had the same chemo as me(no longer used) and is cancer free for over twenty years. Go FOXY!

Friendinpenn's picture
Friendinpenn
Posts: 70
Joined: Oct 2010

Just got a chest/abdominal/pelvis scan review....all OK   this is 5 years now!    I Always like seeing you positive messages....I Thank You....

 

impactzone's picture
impactzone
Posts: 531
Joined: Aug 2006

Stage 4 at dx and that was 8 years ago. I am NED for 3 years now but you never know.  

All my best

CHip

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

 

I am currently NED from both Tedticular and Colon cancer. After seven surgeries and 29 chemo treatments., 22 radiation treatments.  All this over 2 years and 10 months. I have had two colon resectiond, one lung resection, three liver resections, and one orchiectomy (testical removed for testicular cancer). I celebrated my 51 birthday in January and I'm looking forward to two daughters weddings over the next year. 

Wishing and praying for the best, for all of us!

Phil

nsichler
Posts: 18
Joined: Dec 2014

Ned you had 90% of your liver with tumors? How many rounds of Chemo before you were NED? Did u have oxaliplatin thru it all?

sammer4u
Posts: 37
Joined: Dec 2011

Stage IV and NED for 3 years this coming Sunday!  And I am not on any medication.  All I do is my follow up CT, Lab work, and Oncology visits at 6 month intervals now!

SilentRenegade's picture
SilentRenegade
Posts: 123
Joined: Sep 2013

This thread is sooo wonderful to read. 

My dad has Stage IV with mets to the lungs and liver. He had two large tumors (one in colon one in rectum) that disappeared with just chemo and radiation. The liver mets disappeared after his first round of chemo - they are still working on the lungs and a spot reappeared in the liver, but he is consistently gaining weight on chemo (After being down to 130lbs at 6ft - he's back up to 150 and plans on being 160 before his next appointment... his heaviest in his life was 175) and has a lot of energy - a huge improvement from last summer and the summer before.

There seriously is hope - you really have to believe in yourself, honestly... I swear half of my dad's success has been the attitude that he's not going to die from cancer. 

UncleBuddy
Posts: 1019
Joined: Aug 2013

Has a lot to do with improvement (IMHO). My brother is still going strong and insists cancer is not going to kick his butt. I believe him! He is stage 4 with several mets to the lung and 1 to the liver. His heart weakened (could be due to chemo for NHL he had in 2000), so his chemo dose was lowered. He has been fighting this since 2011.

As you will see, there are many on here who have been around for a long time who are stage 4, but sometimes we do lose some of our members. I like to look at the glass as half full, so I like to hear all the stories of people who are living with stage 4 cancer for years or have become NED! I think many who have become NED had some sort of surgery.

Lin

BillO60
Posts: 72
Joined: Mar 2015

I haven't been on here for awhile. Was diagnosed with CRC in March after an endoscopy/colonoscopy showed a 10 cm circumferential mass about 5 cm in from the anal verge. 

Biopsy came back as adenocarcinoma.  A CT scan, an MRI, and then a PET scan showed some sub-centimeter "cysts" in the liver but both the surgeon and oncologist used the word inconclusive and planned to do a biopsy if possible during surgery. I went through 28 days of radiation for the CRC tumor and 42 days of twice a day oral doses of Capcetibine.

Aside from making many, many trips to the bathroom during and after the treatment I tolerated it reasonably well. Lots of fatigue which I attribute to getting 1 or 2 hours of sleep in a row each night because of the 8+ urgent trips to the bathroom that kept waking me up. Even taking max doses of Lomotil and Immodium around the clock did nothing to slow it down. It's been about 10 weeks and things are much improved compared to when I was in treatment although I'm still fatigued and have to be close to a bathroom during the day.

Although the rad/chemo was meant to reduce the tumor size I'm not convinced that it had any affect. I've been scheduled for surgery mid-August and was introduced to a 2nd surgeon who ordered a follow-up MRI scan of the pelivis and one of the liver. I had not seen the original test results regarding the liver and might have been defining the word "inconclusive" too optimistically. This last MRI was no different from the first on either the CRC or the liver.

I got a copy of the results that showed a 1 CM lesion in segment 7 and several smaller lesions in both Segments 5 and 7 which "possibly represent small metastases". So, although mentally geared up to deal with the surgery and chemo for the CRC I hadn't been mentally prepared to deal with the strong likelyhood of a Stage IV diagnosis. 

It's taken me a few days of researching and getting my head wrapped around this and after reading so much doom and gloom on the web it's good to find more optimistic and postive results in here.

Thank you all for your postive stories. It helps keep us newbies going.

Bill

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

So good to see you back, and get an update. 

I do hope that all goes well when you have your surgery. Keep us informed on how its going. 

I also had an inconclusive spot on my liver, when I started this journey. It did turn out to be a tumour, which I had ablated 13 months ago. I have been doing well, ever since. CT Scan and blood work coming up on Monday, but I don't anticipate anything bad. 

There are some great success stories on here. Pop back often, especially when you're feeling overwhelmed. 

Sue - Trubrit

lunabella3's picture
lunabella3
Posts: 1
Joined: Jul 2015

i have just joined looking to connect with others who are going through the same journey.  I am 46 and am waiting to have radiation next week then surgery to remove colon tumor in mid-September.  I have undergone chemo with a 55% reduction in tumor.  I also have a nodule on each lung which we will deal with after colon issue addressed.  I am fighting hard but have to admit I am tired and a little overwhelmed by the treatments ahead.  Any tips for a newbie? 

Candace Hill
Posts: 4
Joined: Jul 2015

Hello - I'm not sure there are any specific tips per se for cancer patients. It's a process of surrounding yourself with good people, being mindful of your actions, choices, joys and sorrows, eating healthfully and exercising, litening to audio books, doing activities that you find worthwhile be it cooking or going to church.  Ride out the depression and fear - it's ok to ask for an antidepressent or antianxiety drug during this time. It will help you stay positive. The process continues to keep your world small - not a bad thing. Take it as an opportunity to be the kind of cancer patient you choose to be. I too have just joined, but have been in and out of chemo for 3 years. Right now it is driving the bus in our lives ad we wish it wasn't so. Work hard to address each day for what it offers: good and bad and then get up and do the same for the following day. Each person handles it differently - there's no right or wrong. It has become a large part of your life, but think about and do all the other things that define you as a person. It's hard work. Use all your resources and you'll discover new ones. Candace

BillO60
Posts: 72
Joined: Mar 2015

Hi Lunabella3,

I was diagnosed in March, went through a course of oral chemo and radiation therapy over a 6 week period and have surgery coming up mid-August to remove tumor in colon.  I have a small lesion in liver that may be biopsied during surgery if it's easy to get to. Otherwise that will be addressed afterwards.

The only thing I can cover is the radiation treatments I had which lasted for 6 weeks. Not sure how long yours are going to go on for so my experience may not be the same as what yours will be.  Plus, I live alone so most of what I had to do was make things as convenient as possible.  I rearranged the area around my bed so that everything was easily accessible (i.e. medications, water bottles, drinking straws, tissues, and pads for the bed (just in case).  I ordered groceries from the local grocery store for delivery every week and if I absolutely didn't feel like cooking I ordered food using an online service. I stocked up on a dozen or so audiobooks. I setup my laptop next to my bed for easy access to email, Skype, etc. and used my laptop to listen to books, watch movies, place orders for food and groceries, etc.  I made sure my phone could be charged next to the bed. 

I had no major problems with being able to eat although my appetite did decrease and I lost about 12 pounds over the 6 week period.  Because the recommendation from the dietitian during treatment was to eat small meals and snack I also stocked up on Carnation Instant Breakfast (no sugar version as I was a diabetic), protein bars, and meal replacement bars.  I didn't have any particular ones that I preferred, it was more a matter of just getting enough calories and nutriition in me each day as possible. Laundry went to a place about a block from me that charges to do laundry.  Mostly I stayed in my bathrobe because all of the clothes I own no longer fit. When I drove in for treatment I wore shorts and a t-shirt.

I don't know what everyone else's reactions have been to radiation therapy but the most annoying issue for me was the physical side effect from the radiation related to bowel movements.  Even taking Lomotil and Immodium around the clock didn't help to slow things down much.  The first couple of weeks wasn't too bad but by week 3 I was averaging 20+ trips to the bathroom both day and night which also meant I wasn't getting much quality sleep at night.

One thing that took awhile to sink in is that the radiation continues to work for weeks after the therapy ends.  The surgeon and oncologist set a 12 week (3 month) recovery period post-radiation before they'd do surgery. Again, everyone is different but it took about 6 weeks after the end of the radiation treatments before I could sleep through the night and another 3 weeks before I started feeling close to normal which meant not having to be close to a bathroom 24 hours a day.  

So, my main tips, at least related to the radiation, are - Be lazy.  Make everything convenient. Stock up on easy to grab (and reasonably healthy) snacks. Possibly stock up on toilet paper and ointments. Don't expect to recover overnight but be grateful if you do.

Another thing is Vitamin D3. I stopped taking it during the treatments (for some unknown idiotic reason) and by the time the treatment was over my D3 level was extremely low.  When I had that conversation with the oncology clinic they said that since D3 plays such an important role in GI health that I should have been taking it during treatment. So, if you haven't started it you may want to discuss taking Vitamin D3 with your doctor.

Good luck to you.

Bill

 

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

May I suggest that you go onto the forum and post an introductoinary post. We can all get to know you, share advice and not hijack nsichler's thread. 

You've found a wonderful resource for info, advice and friendship. I hope to see you posting soon. 

Sue - Trubrit

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