Stage IV - 5 Years NED

swimmer22

I have not been active on the board for quite sometime, but return to offer hope to those individuals who are knee-deep in this battle. I am now 5-years out NED since the end of treatments. I was diagnosed December 2010 as Stage IV at 46 years old with rectal cancer, with metastases to my lungs (3 tiny spots less than I millimeter in size). Surgery was CAT guided to locate the nodules during surgery. I had my treatments at a major cancer center here on the east coast.

I first had surgery to remove (and confirm cancerous) the lung nodules. A PET identified them as potentially suspicious and were confirmed positive for colorectal cancer after surgery. I then completed 6 treatments of Folflox. Next came 28 days radiation and Xelodia to shrink the rectal tumor. I was fortunate to have a complete response (shrinking rectal tumor the size of a plum to scar tissue). Next came an LAR to remove the scar tissue that included a temporary ileostomy. I then completed 12 Folfiri treatments ending April 2012. While my story goes against the odds, these results are attainable. Both my surgeon and I pushed for surgery at every step. I believe initially addressing my lung metastases was a good step. They offered biopsy, chemo, or surgery as my first options... and I went with surgery - I wanted them removed.

Luckily though the grace of God and great medicine, I have been NED since my LAR. Just met with my oncologist and they have moved me to annual scans at this point. I wanted to share my story of HOPE. At my initial point of diagnosis of Stage IV cancer, I scoured these boards looking for stories with positive outcomes. My best wishes and prayers to all traveling this road

ellend

Wonderful news

It is so nice to hear good news on this board and especially to give hope to those recently diagnosed.  Congratulations on being 5 years NED!

I also have a temporary iliostomy that is scheduled to be reversed in February. I am curious as to the experience you had with your reversal. I know everyone's experience is different and I know it might be a bit of a rough go at first and things are not likely to be the same ever again, but I am interested in hearing your story.

Thank you,

Ellen

danker

iliostomy

I too had an iliostomy after my resection.  Six weeks later the iliostomy was reversed and my plumbing reconnected.

However I developed a fisstula. Now I was leaking at the ilio site. More days with a bag!!  But the fistula healed itself from the inside out afer about 5 weeks.  I have thus been NED for 6 years now.  Was 77 when initially dxed.  

Currently 84.

Joan M

It is encouraging to hear your progress!

Thank you all for posting the news of your successful treatments.  I was diagnosed at stage 4 in March 2016.  So far I have only had chemo.  I am looking into other options after the holidays.  I hope to get to NED one day and do not believe chemo only will get me to that point. 

Today is my 55th birthday and I hope to be here for many more. 

Joan

 

Trubrit

Joan M said:

It is encouraging to hear your progress!

Thank you all for posting the news of your successful treatments.  I was diagnosed at stage 4 in March 2016.  So far I have only had chemo.  I am looking into other options after the holidays.  I hope to get to NED one day and do not believe chemo only will get me to that point. 

Today is my 55th birthday and I hope to be here for many more. 

Joan

 

Happy Birthday, Joan!

May you see 55 more (OK, I am being optomistic here).  It is also my birthday next week, as well as several more members here. December is a good month. 

TRU

swimmer22

ellend said:

Wonderful news

It is so nice to hear good news on this board and especially to give hope to those recently diagnosed.  Congratulations on being 5 years NED!

I also have a temporary iliostomy that is scheduled to be reversed in February. I am curious as to the experience you had with your reversal. I know everyone's experience is different and I know it might be a bit of a rough go at first and things are not likely to be the same ever again, but I am interested in hearing your story.

Thank you,

Ellen

Ileostomy Reversal

Hello-

In response to your question, my illiostomy reversal occurred in September 2014, after completion of my last Folfiri chemotherapy treatment in April of that year. I will be honest. I thought the reversal would be the easiest event of all (compared to everything else) and I would be back to normal in a week or so. In reality, for me, it was harder than the lung or LAR surgery.  I was in the hospital for 4 days, waiting for my bowels to "wake up" and once they did I was sent home. The next week comprised alternating constipation and diarrhea accompanied with nausea. I was back in the emergency room a few days later, convinced that I had some obstruction. Testing revealed otherwise and they sent me home. :-)  

Honestly, the first several weeks were rough with many, frequent bathroom trips. I remember thinking the reversal was a mistake as it limited my activity regarding close proximity to a bathroom and the unpredictability of needing to go.  I thought I should have left well enough alone, as once I became accustomed to the ileostomy, it wasn't really that bad. I am a professional, interacting with many people, business presentation, etc. and nobody even realized I had an ostomy. 

That being said, things did begin to smooth out over the course of the next several months. My bathroom habits are certainly not the same as prior to my LAR; however, it is very manageable and I have learned what to eat and what food to stay clear of. Sorry for this graphic detail (only shared with a fellow comrade), but I now am at a very good point. I have bowel movements about every other day or so... but when I do have them, it takes several trips to the bathroom to complete. I go some, feel like I am finished, but then have the urge again in 10 or so minutes. Typically after about 4 or so trips... I am good to go. I also use Imodium when the event turns into diarrhea or I know I need to control trips to the bathroom due to other planned activities. :-)

In summary- it takes some getting used to but in the end it is great to having my internal plumbing returned to normal service. I am certain you will feel the same. I think my expectations may have been a little to optimistic for such an instant return to normalcy- honestly, the process matured over the course of the first year. Best of luck to you with this upcoming procedure!

 

ellend

Thank you swimmer22

Thank you for sharing your experience with iliostomy reversal. From everything I read, I expect the first few months to be rough. However, it is good to hear that after the rough patch, you are happy with the outcome. It does sound like it is something that needs to be managed long term, but caring for the iliostomy is also tiring.

Thank you also for the well wishes!

beaumontdave

Thanks for posting...........

Thanks for posting................................Dave

Trip

Much needed, thank you

I stumbed onto this site and signed up tonight, 19 Dec. In April of this year I was told I have colon cancer. I had surgery and completed my chemo regiment. My first follow up was this past Thursday. I knew without question I was free and clear of this cancer. However, due to the CT report I read online today I believe I will get a call tomorrow officially letting me know the cancer has spread to my liver. For a moment I lost all hope. I am a long way from a smile but your story helps. I really needed to read it. Thank you for sharing it. 

Trubrit

Trip said:

Much needed, thank you

I stumbed onto this site and signed up tonight, 19 Dec. In April of this year I was told I have colon cancer. I had surgery and completed my chemo regiment. My first follow up was this past Thursday. I knew without question I was free and clear of this cancer. However, due to the CT report I read online today I believe I will get a call tomorrow officially letting me know the cancer has spread to my liver. For a moment I lost all hope. I am a long way from a smile but your story helps. I really needed to read it. Thank you for sharing it. 

Many

Hello Trip.  I am happy that you found this site, and Joan's thread has given you the mental boost you need as you wait for the results of your tets.  I hope that you are wrong and find everything going well, but, if you don't, please don't dispare. There are many here who have been through, one, two, several treatment cycles and are doing well now. I myself had the Cancer spread to the liver, and that was two years eight months ago, with clear scans ever since. 

If your news isn't good - or even if it is - I hope you pop back and join us. 

TRU

Phil64

Glory be to God! I too am NED

Glory be to God! I too am NED after stage IV colorectal cancer and stage I of testicular cancer.  SEVEN surgeries (one lung resection, two colon resections, and THREE liver resections, one testicular surgery as well). I've been NED since December of 2014.

It's always wonderful to hear good news!!!  Especially when I was going through the craziness of not knowing what was coming next. I guess I still don't know what the future holds but I trust that I will find the strength to take it on, ONE step at a time.

God Bless!

JanJan63

Thanks for sharing! You guys

Thanks for sharing! You guys give hope to all of us! Keep on doing it!

Hugs,

Jan

Joan M

Trubrit said:

Happy Birthday, Joan!

May you see 55 more (OK, I am being optomistic here).  It is also my birthday next week, as well as several more members here. December is a good month. 

TRU

55 more years sounds good to me!

Thank you Tru!  I just saw your response above, so am late in replying.  I hope you had a great birthday and 50 more for you too!

I continue praying for a complete cure of this cancer.  I am hoping to reach the NED stage by summer after I get the Microwave ablation and radioactive beads to get rid of the tumors in my liver.  

Joan