Roll Call ****ALL****
Comments
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LurkerSandi1 said:Still Here
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
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"
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Hope you stay NED, toughMomof2plusteentwins said:Diagnosed April 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.</p>Hope you stay NED, tough journey. Hugs!
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Glad he us doing do well!keystone said:It's been a while!
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.
Stephanie
Glad he us doing do well!
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Don't give up!rls67 said:Roll call
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.
Don't give up!
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Oh that would make me mad. Ibiglaur said:I'm Still here
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
Oh that would make me mad. I had a rough beginning too. Happy for you!
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Keep in fighting. LiveSandi1 said:Still Here
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
Keep in fighting. Live life, only choice we have. Can't give up!
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Hang in there Xeloda is aBee bee said:Newbie, rectal cancer dx June 2013 @ 37yo
Just starting my cancer journey.
Stage III, 5cm tumor, 5 lymph nodes affected.
Started chemo (Xeloda) & radiation last week.
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!
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Such a great attitude! Waydmj101 said:I was Dx with Rectal Cancer
I was Dx with Rectal Cancer stage 2B in December 2010, Followed by neo-adjuvant treatment of 5FU and Radiation for 30 day.
April 2011 had Abdominal Pertonial Resection - Colonectomy resulting in Colostomy (Rectum and Anus removed)
July 2011-November 2011 FolFox resultng resulting in Nuropathy of hand and feet.
Feb 2012 went for Thryroid Cancer(2007) followup and found Metastatic Colon Cancer appeared in my lungs.
May - Oct 2012 FolFiri treatment with Vectibix -
Nov 2012 repaired back end
Remained on Vectibix from Nov 2012-July 2013
Began Xeloda in March 2013 when we found growth in Lungs had progressed.
Both Lobes of my lungs have mets the disease is classified as minimal.
July 2013 began Avastin along with Xeloda - both every 3 weeks.
Minimal dosage of Xeloda as hand and foot syndrome occurring.
June 2013 I turned 50.. ... feeling good and looking good Hair has grown back from FolFiri and my eyelashes are luscious from Vectibix.
I have been very lucky.. I have worked thru all of the above treatments.. My job allows me to work from home.
Stay Well Everyone!!!!!
Donna
Such a great attitude! Way to go!
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Hang in there! It's tough,serenity101 said:roll call check in
I was diagnosed in May 2012 with stage 4 colon cancer. They found numerous metatases in both lobes of liver: "more tumor than liver" is how my onc describes my first scan. First CEA was 8800.
Had surgery the day after diagnosis, did not need colostomy.
Did 7 rounds of FOLFOX + Avastin which shrunk the the tumors significantly, then had allergic reaction to Oxaliplatin. Still way too many tumors to be resectable, but at least now you can see my liver in my liver scans, and it's back to a normal size.
Currently on 5FU + Avastin, stable as of last scan, although CEA was up a little (almost 15, at its lowest was around 6, I think). Have had to have a couple of breaks due to reduced platelets and elevated liver function tests. Am also now taking prednisone to see if it will keep the platelets up a bit more.
Considering retrying the Oxy, but we are waiting to see what my next scan shows in late August.
Have come to care about all of you, even though I don't post much.
Best wishes,
Serenity
Hang in there! It's tough, but one foot in front of the other,
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Goodness. So sorry to heardb8ne1 said:Fairly New
Diagnosed on Dec. 7, 2012 - the week after 50th Birthday - with Stage 3 Colorectal Cancer. Large T3 tumor with at least 1 node involved, per endoscopic ultrasound.
Chemoradiation: Every week day for 6 weeks. 5FU pump. Jan through mid-February 2013. Worked full-time throughout.
Joined board after lurking for a while in February 2013.
MRI: Radiologist and oncologist had concerns regarding spot on my kidney that showed up on pre-radiation CAT scan. So off to the urologist for 2nd opinion. Urologist said lets wait and see and to concentrate on CC cancer first. Will revisit on post treatment scans to monitor growth. Also watching 2 suspicious spots on lungs (very small).
Surgery: April 11, 2013. Removed 10 inches of colon/rectum. Got a last minute "two-fer" surgery, as enlarged uterus was impeding access to colon. (History of large, numerous fibroid tumors in uterus anyway. Uterus looked "20 weeks pregnant" due to tumors). Removed one ovary due to radiation damage, too. No ostomy needed and no NG tube after surgery. Textbook recovery.
Pathology: Chemo/rad completely eradicated tumor and lymph. No evidence of any cancer in tumor, 15 lymph nodes, clean ends of anastamosis, uterus, and ovary.
FOLFOX: Round 1 on May 15, 2013. Experienced just about all the side effects, plus debilitating pain for 4-7 hours daily from Sunday to Sunday. This occurred for the 1st 3 rounds. Round 4 onc cut Oxi by 25% and the pain decreased, only lasted a few days mid-cyle, and the RX's that were prescribed during earlier rounds finally helped to ease discomfort. Unfortunately, pain ramped up a bit during Round 5, although not as bad as the 1st 3 rounds, so it's still manageable. Gotta love the cumulative effects... Just had Round 6, so we will see what this round has in store!
2 Broken Wrists: Due to side effects of FOLFOX, I'm sure (neuropathies and imbalances), I fell on the 4th of July and fractured both of my wrists. Bruised my tailbone, too, but there's nothing they can do for that). I just saw the orthopedic surgeon and got new, tighter casts this past week. He indicated that I could get the casts removed as soon as August 8, depending on how well the breaks have healed. I will then need to wear splints and get physical therapy until healing is complete. I had been working full time (except for surgery and recovery), but had to take another leave for wrists. Hopefully I can get back to work after I get my splints, as my brain is turning to mush, thanks to chemo brain!
Looking forward to my LAST FOLFOX treatment on September 18, 2013 - as long as my CBC's remain good.
Have been following the boards regularly and praying for you all.
Best,
Jenni
Goodness. So sorry to hear about the fall. I know it must be tougher for you then me. I only broke my foot while on chemo Hang in there.
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God bless you. We startedjohnnybegood said:here we go
dx colorectal cancer in sept.2008,had 5 wks radiation and xeloda to shrink the tumor,had surgery dec.2008 my mom(wolfen stayed with me for six months helping my husband take care of me she found this site for me) had temp colostomy for 5 wks then reversal in feb 2009,march2009started preventative chemo.oxy,leucorvin and 5fu pump had 10 tx of that almost killed me.doc kept saying i would be fine,you are young(dx at 44 years old)was ned for 2010 but still had severe neuropathy and was always tired could not return to work so finally got disability.had my yearly scan in jan2011 and found spot on liver.was sent to my surgen who did a better ct scan and found 3 spots on liver and 2 spots in one lungnow stage 4.started irrinatecan +avastin march 2011,had liver resection sept2011 and back on irritatecan+avastin for lung mets until march 2012 when it began to beat me down with stomach cramps and diareah.put on low dose of xeloda because platelets were too low for avastin.spent much of 2012 trying different drugs to get my platelets to rise as to no success in any of it had my spleen taken out in feb 2013 to get the reserve of platelets.that worked well during consult with my surgen for spleenectomy i wanted to know how many spots were in my lungs,last count in 2011 after liver resection(3 spots in one lung and two in the other while i was off chemo for liver resection it went over in my other lung)He told me as of feb 2013 i had 38 spots total now i am inoperable doing higher dosage of xeloda+avastin and have developed bad hand and foot syndrom.i will tough the next month out until my next scan in august and onc may take me off chemo for a month to clear this hand and foot thing up.so thats me living one day at a time on earth with my glorious Lord until He decides to take me home ...Godbless....johnnybrgood
God bless you. We started this journey only months apart, hang in there with me. Hugs!
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i have not read through allpog451 said:Not so much a newbie but a lurker
Ive been hanging around here for a couple of years but im more active elsewhere, but i guess I can at least give an update.
Dx Sept 2011 after a colonoscopy intended to find the cause of a bout of bloody diarrhea (which cleared up of ist own accord and almost certainly wasnt cancer related).
Rectal cancer StIII. Radiation and Xeldoa.
Lar Feb 2012, temp illeo reversed after 6 weeks after developing a fistula between illeo and op wound.
Adjuvant Xeloda and CEA @ 3 but CA19-9 @40 even after surgery. After 3 months CEA rising and CA19-9 doubling every few weeks, liver mets Dx Sept 2012. 3 rnds FOLFOX & Avastin, 6 weeks break, liver resection Jan 2013, something like 10 mets and 60% of liver removed. NED after surgery, CEA 1,7, CA19-9 27
Currently finishing 3 rounds adjuvant Folfox & Avastin, status unclear, follow up scan end of Aug, Hopefully still NED.
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.
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This posted above but was suppose to be at the end.Nana b said:Keep in fighting. Live
Keep in fighting. Live life, only choice we have. Can't give up!
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.
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a walk on the wild side, and a leap of faith
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.
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Roll call
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.
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Roll call
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.
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Still Here!
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 4October 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 areaAugust 2013 biopsy on omentum tumor; specimen sent to Foundation Medicine in hopes of finding more targeted treatment for me
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Hang in there Sharon. Try aSharonVegas said:Still Here!
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 4October 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 areaAugust 2013 biopsy on omentum tumor; specimen sent to Foundation Medicine in hopes of finding more targeted treatment for me
Hang in there Sharon. Try a diet that is great fir the immune system. It can't hurt. Big hug.
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Add me in
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.0 -
Newbie, start 5-FU tomorrow
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
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