Semi Colon ROLL CALL

babe12

Semi colon

Hi! I'm from the gyno board, but do check in with this board too. I was dx 9-23-2011 with stage IVa vaginal cancer, with involvement in the rectum. I had concurrent chemo (5fu & cisplatin) & radiation, then a posterior pelvic exenteration on 2-3-2012. I had clean margins in the surgery & have been NED since. It seems like a very bad dream to me now, but my ostomy bad quickly reminds me it was real.

Life is precious and I am grateful for each & every day.

Babe

lp1964

Hi Everyone,

I was diagnosed with rectal cancer at age 48 in May of 2013. I just finished a long ugly divorce and started my new life when cancer hit. It was obvious from the beginning that they cannot save my sphyncter and I have to live with permanent colostomy. Initially I had paralizing pain but the radiation took care of it. I worked through the radiation and chemo, I stopped working before the surgery in October of 2013. Recovery from the surgery was hard. Only six days in the hospital, 4 drains and the colostomy bag hanging off me. But I was elated that the cancer was out of my body. They had to remove even some of my tailbone, but all borders were clear and no lymph nodes. 

i got married that summer, the cancer brought us closer with my wife. My sister came to stay with us from Europe and her soups during the chemo were priceless. The chemo was the worse experience of my life which I finished last May. We celebrated with a trip to the Dominican Republic which we planned BC (before cancer). I had 2 clear CT's and a colonoscopy since. Adjustment is not easy since the colostomy is a constant and permanent reminder. I started working again in dentistry, which I love and it's also necessary to pay the accumulated debt.

But I'm full of plans and optimism and hoping that cancer or an other major illness won't stop me for a long time. 

Thanks for all the support and advise from the Central Coast of California.

Laz

babe12

lp1964 said:

Hi Everyone,

I was diagnosed with rectal cancer at age 48 in May of 2013. I just finished a long ugly divorce and started my new life when cancer hit. It was obvious from the beginning that they cannot save my sphyncter and I have to live with permanent colostomy. Initially I had paralizing pain but the radiation took care of it. I worked through the radiation and chemo, I stopped working before the surgery in October of 2013. Recovery from the surgery was hard. Only six days in the hospital, 4 drains and the colostomy bag hanging off me. But I was elated that the cancer was out of my body. They had to remove even some of my tailbone, but all borders were clear and no lymph nodes. 

i got married that summer, the cancer brought us closer with my wife. My sister came to stay with us from Europe and her soups during the chemo were priceless. The chemo was the worse experience of my life which I finished last May. We celebrated with a trip to the Dominican Republic which we planned BC (before cancer). I had 2 clear CT's and a colonoscopy since. Adjustment is not easy since the colostomy is a constant and permanent reminder. I started working again in dentistry, which I love and it's also necessary to pay the accumulated debt.

But I'm full of plans and optimism and hoping that cancer or an other major illness won't stop me for a long time. 

Thanks for all the support and advise from the Central Coast of California.

Laz

Laz

Laz, you are an inspiration!!

Fight for my love

babe12 said:

Semi colon

Hi! I'm from the gyno board, but do check in with this board too. I was dx 9-23-2011 with stage IVa vaginal cancer, with involvement in the rectum. I had concurrent chemo (5fu & cisplatin) & radiation, then a posterior pelvic exenteration on 2-3-2012. I had clean margins in the surgery & have been NED since. It seems like a very bad dream to me now, but my ostomy bad quickly reminds me it was real.

Life is precious and I am grateful for each & every day.

Babe

Hi Babe, I thought my husband

Hi Babe, I thought my husband was the only one who had pelvic exenteration, it is good to know you had the same surgery. I am very happy that you have been NED since. My husband's surgery(OCT 29, 2014) went well, post surgery CT scan and pathology report were both good, but somehow his CEA was elevated a couple of days ago. Now doctor ordered a Pet scan for him to see what is going on, hopefully even if there is anything , it will be easily taken care of. Thank you for your post, this doesn't make us feel alone.

lesvanb

Hello all – Stage 4 dx 5/08 here

I haven't posted in a while but do appreciate all my old buds here who helped me so much through the first years of my stage 4 diagnosis. Greetings to all the newbies, too. There are great folks here who generously give of their knowledge and support.

• Dx Stage 4a rectal May '08 (one met to liver)

LAR and R lobe liver resection fall '08 plus the usual chemo and radiation pre-surgery and then 6 months chemo afterwards (FOLFOX). NED after surgeries.

• Recurrence June '10 4 mets in lungs (one in each lobe)

SBRT to lung mets Jan '11. NED after SBRT.

• R lower lung resection July '12 after one of the four mets regrew. NED after wedge resection.

I'm now on a 4-6 month CT scan schedule (last PET before lung resection) – next scan is the end of March. CEA is not a good indicator but always around 1 (5.5 at dx). My docs are not very concerned at this point because I am nearly 5 years out from last recurrence and will be 3 years out from lung resection in July. Like most folks here, I am grateful for my life, and I deal with side effects from treatment –  less than grade 1 neuropathy in feet and ankles (yoga and weight training has mitigated balance and strength issues) and compromised lung function due to radiation (uphills are a b....), and the lung wedge resection with lymph node removal most likely caused a significant R pleural effusion last summer which had to be drained. I also have dealt with Post traumatic stress though that too has been miigated with finding good trauma therapy. Complementary care has been an integral part of my treatment plan from the beginning – acupuncture, naturopathy, medical chi gong, Tai Chi, meditation, diet, and high intensity strength training. Iscador (mistletoe), high dose IV Vitamin C, copper reduction therapy, plus targeted supplements to deal with inflammation, low vitamin D levels etc have also been part of the mix. I have a good caregiver network, and am able to work 3/4 time (34 hrs/week) at decent office job. Knee athritis also limits but that's not cancer-related. I certainly cannot point to the one thing that is the key to me still being here on the planet- I don't believe there is one thing-, but I do know that my physical, emotional and mental fitness has benefitted from my working consistently on many levels. 

Mostly I feel very blessed and very grateful. I can ride my horse, cross-country ski on the flats, enjoy nice walks, and spend lots of time outside watching wildlife. My prayers and love go out to all who affected by this disease. My heart aches for those who have passed. I miss them. May all of us be comforted by our loved ones, families, friends, communites who support us and help us keep on keeping on, 

Sonia32

Arghh I am an old timer now

Doubt anyone remembers me

Was 32 when I was told I had the big c.

Diagnosed stage 3

10/11 lymph nodes

Surgery followed by ivf treatment, then 6 months of chemo.

5 years in remission so far into the 6th year hopefully.

Cancer took my mum, ex husband went away. But it did give me an extended family who I still have in my life and I am grateful for. 

 

 

StacyGleaso

Sonia32 said:

Arghh I am an old timer now

Doubt anyone remembers me

Was 32 when I was told I had the big c.

Diagnosed stage 3

10/11 lymph nodes

Surgery followed by ivf treatment, then 6 months of chemo.

5 years in remission so far into the 6th year hopefully.

Cancer took my mum, ex husband went away. But it did give me an extended family who I still have in my life and I am grateful for. 

 

 

I REMEMBER YOU, FRIEND!!!

SONIA!!!  I totally remember you, my facebook friend!

 

Hugs on your success!!!

 

Stacy

Amy K

Going into 6th month

I am my husband's caregiver. He was diagnosed in August 2014 w/stage IV colorectal cancer w/mets to lining of abdominal organs and lymph nodes. Tumor removal w/portions of large and small intestine removed but no colostomy. Began Chemo in September and is still going with bi-monthly rounds of Fluorouracil, Avastin and Oxaliplatin. Whichever of those is given in the 48 hour pump he takes home makes him have unbearable pain, which is somewhat sucessfully managed with hydrocodone. We are still trying to figure out which drugs give which side effects. He sleeps most of the day and parts of the night. He is light headed, short winded and when he receives each treatment, his voice is quite strained for several days. He has no appetite and is given a drug to help increase his hunger. He has mood swings that range from talking incessantly about everything under the sun (except how he feels about what is happening) to humongous angry outbursts over the smallest things that make no sense at all. The latest symptom is talking about things that make no sense to me, almost as if he is hallucinating, and doing things that are not making sense... like this afternoon he got up to get ice cream.. and hollered from the kitchen that he could not find it. I got up and when I got to the kitchen he was looking in the refrigerator, not the freezer. This is all very frightening to me and I am unsure what to do about it. The nonsense talking and actions are new. I will be discussing them with his oncologist next visit. I feel so helpless and all alone sometimes. I am glad to have found this forum.

pluckey

I will be 6 years past my

I will be 6 years past my expiration date in March 2015!

Diagnosed March 2009- very large colon mass and 9, yes 9 mets to liver.

9 surgeries, colostomy, infections, blockages etc....

After my liver resection in 2010, began my way towards healing.

Small met to lung resected in 2012..

going strong ever since

 

Peggy

sflgirl

pluckey said:

I will be 6 years past my

I will be 6 years past my expiration date in March 2015!

Diagnosed March 2009- very large colon mass and 9, yes 9 mets to liver.

9 surgeries, colostomy, infections, blockages etc....

After my liver resection in 2010, began my way towards healing.

Small met to lung resected in 2012..

going strong ever since

 

Peggy

Awesome!  Thanks for sharing

Awesome!  Thanks for sharing with those of us recently diagnosed (rectal tumor and 2 liver mets).  Personally I find great comfort in your story.

Andrea

valley

9 years cancer free stage 3 rectal cancer

My husband was diagnosed Jan. 2006 stage 3 rectal cancer 10/33 lymph nodes involved.  Had radiation and chemo, resection and 4 more months of chemo.   He has been NED since.  I never really posted much but reading all the success stories really helped me get through.   I havent been on for a while its wonderful to see everyone.

NewHere

Just Diagnosed

Offical biopsy came back less than a week ago, though scans indicated issue about 10 days earlier.  Immediately consulted with surgeons.  Sloan this week for surgery at which time will have a sense of the stage.  As of now they are saying II or III in liklihood.  Thanks for the info about NED, I am still trying to figure out the erms and shorthand here.  

rsnow

Still Here

Diagnoised in Sept 2013 as T4aN2a.  I had a full colectomy and had 12 rounds of FolFox.  I have had 3 good scans since the treatment and my bloodwork looks good so far.  My hair has grown back and I have put on some weight.  Everything is almost back to normal except the quarterly thumbs-up / thumbs-down meetings with my oncologist, half dozen trips to the bathroom every day and numb feet and hands.  - West Texas

RobinF

Checking in from sunny Seattle

Dx Sept 2014 stage 4 colon cancer at the age of 50. Surgery next day to remove tumor. 3 of 18 lymph nodes involved and peritoneal mets. 

Started FOLFOX with Avastin and Leucovorin mid Nov, 2 month CT was clear. Have 5 chemo treatments left of my 12, am meeting with surgeon from Univ of Washington Med Ctr on Mar 3 to talk about HIPEC. 

very encouraging to see so many other stage 4 folks who have been NED for a long time!

 

 

Daffodil324

Stage 3 five years ago, currently NED

I was diagnosed with stage 3 colon cancer after a colonoscopy in August 2009 at age 58. I had a colon resection followed by the full 12 treatments of Folfox. I'm a teacher (retired now), and I took sick leave and stayed home during the fall of 2009 to recover from surgery (I had some complications) and to get chemo started. I went back to work in January 2010, taking a couple of days off every two weeks for chemo. Looking back I don't know how I did it, but I did! I finished chemo in spring 2010. Ever since then I've been doing all right. I've had annual colonoscopies since diagnosis and I've had a few polyps, but that's been all. I've had CT scans and labwork regularly over the past few years, and everything's been good. My CEA level is non-detectable according to my oncologist. In 2014 I hit the 5 year mark and can now say I'm NED. I live in Jacksonville, FL.