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Roll Call ****ALL****

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I think it has been awhile since we had one of these, I welcome all newbies, and those thay have been around to give history and an update on where we are in our journey.  Lurkers plesae let us know how you are doing.  

 

I  will start

 

I was diagnosed November 2008  Stage IV

Colorectal Surgery took out tumour, about 7 lymp nodes had cancer. 

Started Folfox/Avastin Janaury for 3 months

liver resction April 2009  60% of liver removed

Folfox for another 3 months

NED until January 2012 then CEA started going up, watched keep doubling to the 40ss

On Xeloda since June 2012.  CEA down about 25 then started to climb back up

Avastin added in April 2013, still climbing

June 2013 stopped Xeloda, CT July 2013, and waiting results which I will get on the 31st.

Off on and on through the last 3 years there has been a a light up on the pet but it comes a goes, they are not sure what it was/is

I can't get a pet until January 204 because of insurance. 

VA hospital told me that they never would have put me on Xeloda until there was evidence, my private ONC says why let it go that far, lets get to the activity now. 

I may start a new chemo next week, a decision, that I have to make.  VA may send me to Standard for a second opinion. 

I will up date you all after I find out more.  

 

Love to hear from you all

 

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

my thoughts too ,Good Luck to all of u

 

angelsbaby

 

michelle

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

i have not read through all the posts here but I'm working in it.   I'm not always on the site but I try to login at least once a week.  I think a roll call helps unite and reunite the oldies the newbies.   it allows  us to read about the treatments everyone is on and allows us to share our journeys so we can read about other oncologist out there and their plan of attack. 

Yes, at times we learn about another, the sad part of this board. We Lost Steve today, losing one of our friends makes for a very sad day.   No, many days of sadness.   God speed dear friend. 

 

Death also gets us thinking of our own mortality.   I've been on this board for almost 5 years and that thought never really goes away.   I have to shake it off and press on, as we all do.  One sore foot in front of the other. 

 

Hope you feel better tomorrow, then you did today, or yesterday. 

dorookie
Posts: 1736
Joined: Jul 2007

DX May 2007, stage 3chad surgery, did chemo, and rads all clear in March 2008

October 2008, it returns to my right lung, another surgery, more chemo clear June 2009 and have been clear since, thank God.

i have my next scan next month, a bit nervous as usual don't expect anything and I will report back the good news after the scans!

 

its not been as easy as it appears from my description above. I have long lasting neuropathy in both feet have to take pills for that, horrible back pain which I believe has to do with the rads but I am no doctor, the physical stuff I can deal with, it's been the mental that has almost destroyed me, to be a stage four survivor for this long and wanting to die isn't much fun. I do have to say after a year and a half worth of counseling I am doing much better emotionally.  The beast changes your life in so many ways. I truly have been blessed to just be alive, to not have been ruined financially, to still having my marriage (but we did separate for a while last year), still having my job and able to do it (law enforcement), I am so thankfully for all of this, but the mental damages is what has got me. I hate to even post because it seems so small compared to all that have posted and what they are going through, ok enough of my ranting...

 

i am very blessed to be coming up on my five year mark this November (I'm counting from the day the beast was cut out of me not when I finished chemo although I will celebrate that day as well)

 

HUGS

BETH

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

DX Feb 2012.  Resection March failed.  Xeloda starting in Sept.  Radiation/Xeloda Nov, Dec.  Removed anus, rectum, ovaries got permanent colostomy January 2013.  Currently NED and plan to stay that way!

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

My CEA has doubled to 100,  since my update above.  CT still clean, colonoscopy being ordered this week.  Wroking with insurance to get a PET done.  I just had one in Dec so, they don't want to aprove one.  

 

Chemo porbably in the horizon. 

Bee bee
Posts: 27
Joined: Jul 2013

Just starting my cancer journey.

Stage III, 5cm tumor, 5 lymph nodes affected.

Started chemo (Xeloda) & radiation last week. 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hang in there Xeloda is a milder chemo, Hopefully you will have less side affects. It does tend to turn your hands and feet purple.   Time will go by and you will be done. Hang in there!

danker
Posts: 1253
Joined: Apr 2012

As one who is on medicare with a supplement that pays what medicare doesn;t, it irks me no end to hear of insurance companies that won"t  cover the tests that we need. Drs don't capriciously require  tests.

It is to cover these costs that we have insurance.  Shame on the company that is welcome to take your premiums but doesn't want to pay your claims.

The total cost of my cancer is approaching $600,000.  My only out-of-pocket costs are my monthly supplement premiums. Maybe the whole country should be on medicare, and not just us retired folk!!!

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

i would happily pay a bit more in taxes to achieve this.  I have a friend whose 17 year old daughter died of cancer last year.  She was recently doing an online fundraiser to pay her medical bills, and that was after our local children's hospital covered a big chunk of it.  Horrible and shameful.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

I had a colonoscopy April 2012 after having 4-5 months of problems, constipation and hemorrhoids, I thought. Rectal cancer Stage IV with mets to liver. CEA was 54. Within 1 week, I had a CT, mammogram, pap smear, appt with onc, started radiation, had port put in, and started continous 5fU chemo. Surgery 4 weeks after chemoradiation in June. Surgery removed rectal tumor, liver tumor, and gallbladder. 4 weeks after surgery started Folfox in July. Finished all 12 doses of chemo without missing a dose in December. CEA since surgery is <0.5. CTs have been clear so far. Checking CEA every month and CTs every 3 months. Next CT in September.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hope you stay NED,  tough journey.   Hugs! 

keystone's picture
keystone
Posts: 134
Joined: Dec 2010

Posting on behalf of my hubby who lurks but does not post.

Dx: 12-10 Stage 3 rectal cancer after his one and only bout with diverticulitis. He was dieting and was at a football game and chose to eat a bag of peanuts, three days later he wound up in the hospital with diverticulitis had CT which reveiled a lesion in the rectum (never any symptoms). Three lypmph nodes involved. Did pre op chemo (Xeloda) for six weeks straight and radiation. Post treatment PET reveiled NED.

CEAs have always been super low <.09 so he must rely on scans for any changes. 

Surgery to remove cancer and make J-pouch 3-25-2011 14 day hospital stay due to Ileus. Temporary iliostomy.

Started post chemo FOLFOX 6-6-11 ended on our 27th wedding aniversary 9-18-11. Had much trouble with Oxiliplatin so only was able to do 4 treatments with that drug.

Had iliostomy reversed 12-18-11. Long road still yet with bowel issue but he says it was worth it!

He has followed up with scan/pet every other 6 months and thank the good Lord he has been NED every since. Next Pet will be this fall.

He has completely cut out soft drinks, which he lived on before. Very little sugar, takes Cimentidine, asprin and pro-biotics daily. He has just started daily exercise and this wife could not be prouder of the wasy he has handled this cancer. I was honestly a basket case for a long time but I've settled down and we are enjoying our granchilderen and new hobby of showing miniature horses.Wink

Stephanie

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Glad he us doing do well! 

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I was dx'd in June 08 with stage 3B colon cancer.  That started the ball rolling for 3 surgeries, 3 additional hospital stays for chemo issues and rather the chemo from h*ll dance.

 

Today I am 5+ years cancer free.

 

I have 2 beautiful grandchildren, Andy who is 5 and Charlotte who is 9 months.  I got my nails painted a month ago for the first time in YEARS and redone this week!  I also had a form of gastric bypass done on July 25th and for the first time in many many moons am looking forward to maybe even dating, the future, and who knows, MAYBE retirement!  

There is life after cancer, just as there is before and during.

 

Best to all.

 

P.

rls67
Posts: 127
Joined: Nov 2012

My dear wife was diagnosed 10/22/12.

She went through 11 rounds of oxilyplaton  and about 8 rounds of avastin

Put on folfiri after folfox stopped working. Sha has had 7 rounds so far.

Treatment extended from every two weeks to every three weeks.

Still fighting the fight and loving life together.

bspangler47's picture
bspangler47
Posts: 145
Joined: Sep 2010

Hi everyone,

 

Its been awhile since I have been on here.  I was dignosed Jan 2009 with colorectal cancer stage 3B.  Went in for surgery in March 2009 where they did remove the tumor I had an ilesctomy bad, temporary (which I was I would of kept), I have had numerous surgeries, chemo, radiaton, and more surgeries and a feeding tube etc.  I just turned 50 in Jan and I am still here.......NED. 

 

I do have other issues but remain positive.  Have other issues with my kidneys from the treatments.  

I am still having issues with loose stools on a everyday basis.

 

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Don't give up!  

biglaur's picture
biglaur
Posts: 72
Joined: Apr 2010

I check in from time to time...but rarely post.  

Diagnosed May '06  after complaining about a sideache for a year doctor finally perscribed a colonoscopy.  Large tumor and 8" of colon removed...enlarged lymph nodes but no cancer involvement.  Decision to do nothing else...just monitor.  18 months later I didn't feel well and insisted on a PET and CT.  Mets to liver and lung, stage IV.  When old films were compared...met to liver was ALREADy there, so chemo would have been the logical step.  Changed docs and institutions, started FOLFOX, and a clinical trial drug.  After 5 rounds, took a 5 week break for stereotactic radiation to zap the mets AND to enjoy my daughter's wedding.  Restarted chemo next day and finished 6 (of 7) final rounds.  Then started xeloda for 6 months.  I've had 30 ct scans, developed an allergy to the contrast...docs and I have decided we can get by with MRI's for now.  CEA remains undetectable, been NED since August '09!  Wedding in October "08 has produced two beautiful grandchildren...and I'm here to play with them...Laurie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Oh that would make me mad. I had a rough beginning too. Happy for you! 

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

We are still here - husband diagnosed August 2008 - stage 4 colorectal cancer.  surgery to remove tumor in colon.  aggressive chemo for 6 months, then maintenance chemo.  Then return of tumors in lung and liver, chemo again. and have been fighting ever since.  recently have paralyzed vocal chord from tumor, new chemo is working for the most part - CEA is down for the first time in about a year.  if this chemo doesn't shrink tumor affecting his voice, then he will have targeted radiation for it.

i'm on here a few times a month to read and get caught up, sometimes i ask questions and sometimes i answer some posts with what knowledge i know - but we are still around.

 

Sandi

 

Matta's picture
Matta
Posts: 39
Joined: Jun 2011

Diagnosed in October 2010 with stage 3C colon cancer after beeing sick for many years and all the doctors that I had asked for help they told me I was depressed and I should go out and walk to get my health back.  They were so wrong and I knew it but they did not listen to me, after coming into ER with ambulance three times in the year 2010 I refused to leave when I was told that there was nothing they could find wrong with my health.  So they had to order some research and in colonscopy they found a big tumor that had grown out of the colon and spread into the lymps.

Sugery in November 2010, 60 cm of the colon cut away, 3 lymps out of 12 were infected and then I had chemo 8x, oxilyplaton and Xeloda for 6 months.  NED since, don´t trust doctors too much after all this.

I´m so thankful to have found you all here, sometimes I so need to contact to all of you and it gives me so much courage to read that I am not the only one that am scared and lonely in this situation.  I´m also thankful to be still alive and I can thank my self for that.  I remember an old song called "Stand by your man"  I sing it and change the lyric to "Stand by your self" Kiss

Matta

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Keep in fighting.   Live life, only choice we have.   Can't give up! 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

i have not read through all the posts here but I'm working in it.   I'm not always on the site but I try to login at least once a week.  I think a roll call helps unite and reunite the oldies the newbies.   it allows  us to read about the treatments everyone is on and allows us to share our journeys so we can read about other oncologist out there and their plan of attack. 

Yes, at times we learn about another, the sad part of this board. We Lost Steve today, losing one of our friends makes for a very sad day.   No, many days of sadness.   God speed dear friend. 

 

Death also gets us thinking of our own mortality.   I've been on this board for almost 5 years and that thought never really goes away.   I have to shake it off and press on, as we all do.  One sore foot in front of the other. 

 

Hope you feel better tomorrow, then you did today, or yesterday. 

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

The dry dx/tx details are in my profile.  Oddly, this has been like a huge fiery disaster receding in the rearview mirror, that you realize its bigger the further you get: peritoneal seeding from a loaded mesentery, para aortic LN cluster, lung thingies, shrinking liver cysts that don't act like cysts.   It took over a year to find out just how bad things were initially - most oncs expect "bad things" soon enough and even they did not realize the true original extent at first.  Our "lucky first shot" CAM neoadjuvant had trashed enough cancer to confuse the standard situation on top of some communication issues.  

I sometimes think of my wife as the (im)patient. She is not into suffering or anything and semi-hysterically disliked even the initial diagnosis from the gastroenterologist, "at least stage II" with a partial obstruction.  She had gone in thinking refractory amoebic dysentery from an inexpensive trip to exotic places.  

She is not one to screw around with anybody or tolerate extra run arounds, most everything gets done at home. Mostly I talk to doctors in person, email or phone.  If we really see our IM/CAM doctor, it may be Skype although he did make house calls the first few months.  Nurse and oral chemo come to the house.  Wife runs her infusions 50% faster than max recommended.  No road trips there.  If she is going to put on mileage through traffic jams, it's shopping or family places.    

--------------

In the beginning, I interviewed a number of oncologists solo, or tried to on some - too many vacations and cruises, got rejected from the oncologists' society meeting, and made little desired progress.  Sometimes I got laughed at on my experimental / CAM initiatives like cimetidine or UFT, and just offered their standard stuff.  We eventually went to the oncologist with the best people touch, according to the surgeon.    My wife saw the look on the oncologist's face when I showed the  survival curves for CA19-9/CSLEX biomarkers with early cimetidine tx (stunned) added to oral 5FU (daily for 1 yr, stages 2-3), and then heard the standard offers again. hmmmmm.

When we left, my wife said, "[tanstaafl], I want you to take care of it" and has never been back to see the oncologists.  Surgeons and CAM doctor, yes. Medical oncologists, nada more in 3+ years.  

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I was DX in march of 2008,stage 3 colorectal cancer.Did chemo,xeloda and  radiation.Had surgery in july 2008,got a permanent colosomy.In april 2012 I had a recurance,tumor on my liver this time now stage 4.I did chemo agian,this time avastin 5fu,folfox,oxy cocktail,then liver resection in july 2012.Then in may 2013 I got a non cancerus tumor in my spine,and had surgery in june 2013,but otherwise I am ned.I am due for another ct scan in september.CEA was 1.4 but now is 2.1.                                                                                                                                                                                                                                                                                                                                                                         

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I was DX in march of 2008,stage 3 colorectal cancer.Did chemo,xeloda and  radiation.Had surgery in july 2008,got a permanent colosomy.In april 2012 I had a recurance,tumor on my liver this time now stage 4.I did chemo agian,this time avastin 5fu,folfox,oxy cocktail,then liver resection in july 2012.Then in may 2013 I got a non cancerus tumor in my spine,and had surgery in june 2013,but otherwise I am ned.I am due for another ct scan in september.CEA was 1.4 but now is 2.1.                                                                                                                                                                                                                                                                                                                                                                         

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

August 1999 surgery to remove small rectal tumor (colon cancer); NED after surgery

Dx stage IV March 2011 - colon cancer tumor on tailbone and it was pressing on sciatic nerve (very painful); no tumors inside colon

Surgeons thought it looked possible to remove tumor from tailbone with only minimal cutting away of sacrum. Need chemo first

April 2011 - July 2011 FolFox6+Avastin,
July 2011 met with surgeons who recommended radiation prior to surgery
September 2011 - October 2011 5 weeks Radiation on sacrum + Xeloda
November & December 2011 met with surgeons again and after serious discussions, I decided surgery on sacrum would be too life changing for me (wheelchair bound, bladder bag, colon bag) plus now peritoneal & omentum mets showed up so chances of surgery getting 100% of cancer were slim
January - June 2012 Folfiri+Cetuximab
July scans show peritoneal & omentum mets progressing, fluid building up in abdomen (acities), CEA rising
August - September 2012 phase II clinical trial Morab 4

October 2012 scans showed one tumor shrank, one grew, and CEA rising so I elected to stop trial and start an FDA approved drug
October 2012 - March 2013 Folfiri+Zaltrap
June 2013 Irinotecan + Zaltrap (by this point, the chemo is working but it's nearly killing me.  I want to quit but we have a new plan)
July 2013 Zaltrap only
August 2013 1 week radiation on sacrum area

August 2013 biopsy on omentum tumor; specimen sent to Foundation Medicine in hopes of finding more targeted treatment for me

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hang in there Sharon.  Try a diet that is great fir the immune system. It can't hurt. Big hug. 

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Diagnosed February 09 with stage 3 cc at 32 yrs old, 10/11 lymh nodes.
Had surgery, ivf and chemo, and now in fourth year of remission (touch wood).
Lost the ex husband as he could not cope with my illness but gained a family in csn.
From Manchester in England.

robval30's picture
robval30
Posts: 13
Joined: Aug 2013

Hi all, I'm new to all of this. Here goes my info: I'm a 40 year old male, just Dx July 3, 2013 with very low rectal cancer (moderately differentiated adenocarcinoma). Petscan and endoanal ultrasound show T3 with one lymph node involvement but all still localized, I guess early stage 3. I start continuous infusion (pump) 5-FU tomorrow, Monday and radiation for 5 and a half weeks. I'm hoping for a smooth journey, if you can call it that. 

 

It's nice to meet everyone,

Rob

Florida

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi,

We're still here.  Dick was diagnosed Jan 2009 with 3c, spread to the nodes.  He had a resection and chemo.  Cancer still there after the intitail 6 months of Folfox and they switched chemo.  In May 2010 he had another surgery for a lymph node and they found cancer in a few lymph nodes and took those out.  NED from June 2010 - January 2011 when mets to lungs showed up.  Has been on chemo since then, about 95 rounds all together.  Did Folfori for a year or so and now on Erbitux and Irenotican.  On chemo every two weeks now.  We feel blessed most of the time, Dick would say that too.  I have to say that Dick has put so much into fighting this cancer and living a full life.  He continues to surf, go to the gym, participate in all areas of our daughters' lives.  He just lives his life the way he needs to live it and in the process inspires the heck out of other people.  I admire him so much.

Thank you to everyone on this board.  You have been here for me (us) every step of the way.  I miss so many people we have lost but know that they would want us to continue to be here for each other.

Aloha,

Kathleen

Fucc
Posts: 92
Joined: Sep 2012

I was diagnosed with stage iv CRC in April 2012 after a precautionary colonoscopy due to a family history of CRC. I was 36 years old at the time. In retrospect I had some symptoms, but nothing that I thought to be unusual. I had my first child a year before and assumed any changes were due to my pregnancy. I had a colon resection, liver resection for one met in section seven of my liver and 12 rounds of folfox. I have been Ned since August of last year. My next scan is in a few days...

UncleBuddy
Posts: 1019
Joined: Aug 2013

I opened this account for my brother who is intellectually disabled. I was reading all these postings and saw so much hope, so I thought it would be good for me to help him do this. I want to give him hope.  I am his advocate, have been helping him get through this. It has been difficult on my brother, as well as our dad and myself.

Well here it goes:

He is currently 49 years old and was diagnosed with Non-hodgkins lymphoma is 2000 and had his spleen removed. He received chemo and from what we understood, he beat the cancer. He developed a slightly enlarged heart from the chemo, but aside from that, all his tests had come back clean. In 2011, he had gone to his onc and his blood levels were slightly elevated. Onc said it was nothing, not to worry. At that time, I was unhappy with the general practioner my dad and brother went to. I felt they weren't thorough. He had never had a rectal exam and never had an EKG, even though my brother is obese. At this point, I put my foot down and made both dad and brother go to a new GP. When the GP did a rectal, he found blood. He sent him for a colonoscopy and they found that he had rectal cancer. Dad wanted to go back to the old onc, I told him that I felt the onc missed this so we need to start with someone new. Doctor did chemo (using an infusion pump) and radiation. He developed a blood clot behind the port and was in and out of the hospital with minor issues that took a toll on him. Then he had surgery to remove the tumor (lower anterior resection). He had a temporary ileostomy and remained in the hospital for weeks while the ileostomy was in place. He had problems with the ileostomy, so he went from the hospital to a rehab center until it was time to remove it. He went back in the hospital, had the ileostomy removed, and went on to do more chemo. This time he had to go into the office and get the chemo through a drip. Once the chemo was over (August 2012) and port was removed, he got a CT scan. It was clear. His CEA levels were good. He's been going every 3 months for his check up and at his last check up, his CEA levels rose. They weren't really high, just a 7, but the doctor thought it was enough to order at CT scan. The CT scna showed 3 tiny nodules, 1 in one lung and 2 in the other. They did a needle biopsy and found it was adenocarcinoma, but since it was such a small piece of tissue, they couldn't tell definitively if it was metastasized rectal cancer or a new lung cancer, but she believe it's the rectal cancer that has metastasized. Now they have to go in and remove the tumor/nodule to make sure. We were supposed to go yesterday for the consult with the thoracic surgeon, but he had an emergency, so we go tomorrow for the consult. I'm not sure if they'll be able to remove all three, but I guess we'll find out tomorrow. Reading your posts have given me and my brother hope. The stats for stage IV look bleak, but your posts have given us a lot of hope. Thank you!!!

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