Roll Call ALL

Nana b · July 2013

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

dmj101 · July 2013

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

wolfen · July 2013

dmj101 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

Still Around, Raquel

I am part of the resident huggers, supporters, and shoulders to cry on. I found the board in 2008 and joined in 2009 after returning home from helping my daughter, Johnnybegood, who was diagnosed in 2008. I will let her post her bio.

I am still trying to be supportive to all of you, "oldies" & "newbies", but have had a bit of difficulty lately. Ron, my husband of 40+ years and Johnnybegood's stepdad, was diagnosed Oct. 2012 with H&N cancer w/lymph node involvement and a secondary of lung cancer. He fought bravely through many complications and lost his battle on May 5, 2013.

I may not always join in a thread, but know I am still rooting for each and every one of you.

Wolfen

annalexandria · July 2013

Let's see...

mastered advanced-level 'gator wrestling as a toddler,

developed unhealthy fear of clowns at age 7 due to that circus incident,

scarred for life at age 12 when I looked under my bed only to see...

wait.

...

You mean my cancer journey.

Gotcha.

In short, dx'ed in '09 with weird cc tumor type, super aggressive and fast-growing.

Have had five surgeries, sliced open from stem to stern (so to speak), lots of tumor bits removed from here and there.

Luckily, despite a lot of spread, so far no sighting of anything in other major organs.

Did a couple of chemos along the way, failed them both (bringing back unpleasant memories of 9th grade).

Thanks to my super-duper surgeons (whose fancy, waterfront houses I do not begrudge in the slightest), I made it to NED in 2011. Last PET was in February, and still clear. Will find out if I am still a lucky duck next month.

AA

KathiM · July 2013

One of the 'oldies'....

Age 49: Dx November 2004 with stage III rectal cancer:

2 inch tumor in first rectal fold. Pre-surgery (neo-adjuvant) chemotherapy (Cisplatin and 5FU pump) and radiation.

Surgery to remove rectum, sigmoid colon, and total hysterectomy (I figured as long as they were there...and I wasn't using that stuff anymore...and my mom had uterine cancer, so it was a no-brainer). J-Pouch procedure to fashion a 'new' rectum out of descending colon, so I could be spared an external appliance.

Dx January, 2005 with stage II breast cancer (found during PET scan for the rectal). Typical treatment: lumpectomy, chemotherapy with ACT, radiation.

Last treatment was July 3, 2006. NED ever since. When I figured out that I should ask what the line was for before getting in it, I stopped getting cancers....*grin*....

Found CSN early 2005 after my hair fell out. Met a bunch of fantastic people...all in total we were called the 'semicolons' and met once a year somewhere in the U.S.

Last 3 years, living in America and The Netherlands (Holland) with my life partner. Currently tethered to So California because 3 weeks ago he received a new heart. Will resume switching countries in a year, with clearance from his heart team.

Hugs, Kathi

pepebcn · July 2013

KathiM said:
One of the 'oldies'....
Age 49: Dx November 2004 with stage III rectal cancer:

2 inch tumor in first rectal fold. Pre-surgery (neo-adjuvant) chemotherapy (Cisplatin and 5FU pump) and radiation.

Surgery to remove rectum, sigmoid colon, and total hysterectomy (I figured as long as they were there...and I wasn't using that stuff anymore...and my mom had uterine cancer, so it was a no-brainer). J-Pouch procedure to fashion a 'new' rectum out of descending colon, so I could be spared an external appliance.

Dx January, 2005 with stage II breast cancer (found during PET scan for the rectal). Typical treatment: lumpectomy, chemotherapy with ACT, radiation.

Last treatment was July 3, 2006. NED ever since. When I figured out that I should ask what the line was for before getting in it, I stopped getting cancers....*grin*....

Found CSN early 2005 after my hair fell out. Met a bunch of fantastic people...all in total we were called the 'semicolons' and met once a year somewhere in the U.S.

Last 3 years, living in America and The Netherlands (Holland) with my life partner. Currently tethered to So California because 3 weeks ago he received a new heart. Will resume switching countries in a year, with clearance from his heart team.

Hugs, Kathi

Tooo long to be explained
Dx may 2009-
Lurking the board may 2009-
Member of the board mid 2010-
Status, nearly 5 years of Stage lV (. 5 times NED 6 recurrences)
Having chemo since the begging just 8 months off after surgeries of colon an liver. currently playing with cancer stopping and continuing chemo when I feel exausted of it! For the moment it's working keeping minimum SUV activity in tumours , mainly lymph nodes!
Abrazos Raquelita!

pepebcn · July 2013

pepebcn said:
Tooo long to be explained
Dx may 2009-
Lurking the board may 2009-
Member of the board mid 2010-
Status, nearly 5 years of Stage lV (. 5 times NED 6 recurrences)
Having chemo since the begging just 8 months off after surgeries of colon an liver. currently playing with cancer stopping and continuing chemo when I feel exausted of it! For the moment it's working keeping minimum SUV activity in tumours , mainly lymph nodes!
Abrazos Raquelita!

By the way I was given 2 weeks or so of life when DX. No sugary
For me .Few hours later I was on chemo and starting to be cured after the first control , 4 months later i was operated so chemo saved my life, despite I'm sure one day will kill me as well! lOL.

herdizziness · July 2013

Feb 2010

Diag 02/06/2010 given 2 weeks without chemo, 4 to 6 months with. CEA count was over 2000, numerous mets in liver, lungs, colon and met in ovary and one in ureter. Told never be surgery candidate. By Dec. 2010 Christmas week, had liver, colon and ureter resection, all other tumors calcified, thanks to chemo everything shrunk or disappeared. Tumors back by march of next year in lungs, liver and colon. More chemo, more tumor growth in July, too many for surgery, then shrunk had liver surgery May 2013. Tumor in sigmoid colon still there (showed gone, but scans were wrong) looking to have surgery on it shortly. Have been on chemo for all these years with exception off for surgeries (heart in April 2012 Being one of them).

Winter Marie

serenity101 · July 2013

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

db8ne1 · July 2013

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

Semira · July 2013

Germany checking in ;-)

Hi everybody and thanks for all that amazing stories. Annalexandia, I love your introduction :-) Tell more about Clowns and gators :-)

So, here we go...

I am caregiver to husband with stage IV Coloncancer. He was diagnosed at the age of 43 back in Nov 2011 while we were sitting on our luggage ready to leave for a 4 weeks trip to India. Well, no trip... but a rollercoaster ride instead of sitting in a plance...

He had surgery 8 days after diagnosis and luckily his 2 liver mets could also be removed. He got an temporary ileostomy and 6 months of chemo (Xeloda + Oxi). Not too much side effects (the ileostomy helped somehow) but neuropathy in hands and feed. Hands are back to normal now but feet still numb. In Mai 2012 the Ileostomy could be removed and since then it is wait and see. His CEA was 95 at the beginning and went down to 0.4. All checks so far were clear and next CT will be end of August. CEA was 1.2 two weeks ago, still deep in the normal range, I know, but I dont like the upward trend. Well... we carergivers have to much time to think about all the what-ifs...

What more... we are from Cologne, Germany (sorry if my English is a bit bumpy) and I am glad I found this board early in our journey. I checked the german boards but there everybody was so down and pessimistic, wich depressed me even more in that bad-news-time. But then I found you and all this wonderful people here, all that knowledge and wisdom which helped and helps so much.

A big hug from

Petra

PS: we were able to catch up with our trip to India this January and spent 5 wonderful weeks in Rajasthan. The picture freaks check in here http://www.travelblog.org/Asia/India/Rajasthan/blog-773419.html :-)

ron50 · July 2013

I'm stubborn
Dxed in Jan 1998 with an aggressive stage 3c colon cancer into six nodes. Small but nasty. 48 sessions of chemo for the rest of the year. I have had no recurrence of cancer since surgery. I joined the board at the end of 2001 and am still here. I have seen a lot of grief and sadness in that time but I choose to keep coming back. I have met some of the finest people I have ever known here and I miss those no longer here.
I have very many ongoing medical problems as a result of my cancer and the treatment but how can I complain when I have had over 15 years of bonus life. At the start I was assured by my surgeon that It would get me. Too aggressive too many lymph nodes he said. I told him I didn't die of cancer. He just laughed and said I hope you are right......So far .so good.. Ron.

PatchAdams · July 2013

Me

Dx'd Stage III Colon 4 1/2 years ago. Surgery and then FOLFOX all 12 tx.

At three year check up in Feb. 2012, a small liver met showed up on CT scan.

Liver resection April 2012

NED since. Now on 6 month CEA and PET/CT scans. Next visit is October

wawaju04976 · July 2013

Husband dx stage 4 melanoma

Husband dx stage 4 melanoma November 2012.

I was dx stage 4 cc with liver mets a week later. Colostomy put in, rectal abscess found, biopsy of liver confirmed CC in liver.

Folfox tx started before Christmas.

Colonoscopy in Feb. revealed clean colon. April PET showed shrinkage in liver tumors.

June 17 reversal of colostomy; as of now (July 25th) that is going great!

Folfox tx number 16 this Friday. Two weeks ago reintroduced Avastin after being off it for eight weeks.

johnnybegood · July 2013

wawaju04976 said:
Husband dx stage 4 melanoma
Husband dx stage 4 melanoma November 2012.

I was dx stage 4 cc with liver mets a week later. Colostomy put in, rectal abscess found, biopsy of liver confirmed CC in liver.

Folfox tx started before Christmas.

Colonoscopy in Feb. revealed clean colon. April PET showed shrinkage in liver tumors.

June 17 reversal of colostomy; as of now (July 25th) that is going great!

Folfox tx number 16 this Friday. Two weeks ago reintroduced Avastin after being off it for eight weeks.

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

KathiM · July 2013

pepebcn said:
By the way I was given 2 weeks or so of life when DX. No sugary
For me .Few hours later I was on chemo and starting to be cured after the first control , 4 months later i was operated so chemo saved my life, despite I'm sure one day will kill me as well! lOL.

I'm SOOOOO glad they were wrong, dearheart!!!

BIG hugs, Kathi

KathiM · July 2013

Semira said:
Germany checking in ;-)
Hi everybody and thanks for all that amazing stories. Annalexandia, I love your introduction :-) Tell more about Clowns and gators :-)

So, here we go...

I am caregiver to husband with stage IV Coloncancer. He was diagnosed at the age of 43 back in Nov 2011 while we were sitting on our luggage ready to leave for a 4 weeks trip to India. Well, no trip... but a rollercoaster ride instead of sitting in a plance...

He had surgery 8 days after diagnosis and luckily his 2 liver mets could also be removed. He got an temporary ileostomy and 6 months of chemo (Xeloda + Oxi). Not too much side effects (the ileostomy helped somehow) but neuropathy in hands and feed. Hands are back to normal now but feet still numb. In Mai 2012 the Ileostomy could be removed and since then it is wait and see. His CEA was 95 at the beginning and went down to 0.4. All checks so far were clear and next CT will be end of August. CEA was 1.2 two weeks ago, still deep in the normal range, I know, but I dont like the upward trend. Well... we carergivers have to much time to think about all the what-ifs...

What more... we are from Cologne, Germany (sorry if my English is a bit bumpy) and I am glad I found this board early in our journey. I checked the german boards but there everybody was so down and pessimistic, wich depressed me even more in that bad-news-time. But then I found you and all this wonderful people here, all that knowledge and wisdom which helped and helps so much.

A big hug from

Petra

PS: we were able to catch up with our trip to India this January and spent 5 wonderful weeks in Rajasthan. The picture freaks check in here http://www.travelblog.org/Asia/India/Rajasthan/blog-773419.html :-)

YEA YEA YEA!!!

I LOVE your travel logs, dearest!!!

Hugs, Kathi

thingy45 · July 2013

johnnybegood 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

one of the lucky ones

I am one of the lucky ones. After 6 years of complaning to family physician, specialist etc, I was finally given a colonoscopy which specialist was unable to perform because obstruction was to large to let him see anything. Stage IIIB

Three weeks later (April 25 , 2011) I had a left Hemi, 40 cm of colon was taken. Onc offered me the usual cocktail , but I declined. I had just lost my husband, moved to another part of Canada to be closer to my kids and said to him.... I just want one more summer........ and decided to go the natural way, juicing, walking, and eating a simple diet with a few herbal supplements thrown in to make it exciting.

LUCKY ME....... , so far so good, still NED. I am again enjoying another summer, I am sooooo blessed.

Lurking on and off but praying for all of you.

Hugs, Marjan

abrub · July 2013

Stage 4 Appendix Cancer, doing great now

“Routine hysterectomy” on April 6, 2007 found metastatic Appendix cancer tumor engulfing my ovary, and seeded throughout my peritoneum. Dx: a very rare Stage IV Mucinous Adenocarcinoma of the Appendix.

More surgery followed, removing my omentum (seeded throughout with tumor) and 2 sections of my colon, one section of my ileum (all reconnected perfectly – never had a bag.) Then Intraperitoneal (IP) chemo – 4 liters of chemo infused into my belly every other week starting 24 hours after surgery. 5 cycles of IP chemo. Then 7 cycles of FolFox + Avastin as “adjuvant chemo” including a major error. 1^st dose of Folfox was based on my body temp in Kg (98kg = 215 lbs) rather than my body weight (135 lbs back then! A nurse had entered my temp as my weight. As my Scots friends say: “Nae good.” (I’m a curler – lots of Scottish friends!)

Extreme side effects and complications every step of the way. However, 5 years post-treatment, I remain cancer-free.

Maxiecat · July 2013

I was dx in June of 2012. I

I was dx in June of 2012. I did not find out the pathology until I was in chemo in July of 2012. I had poorly differentiated signet ring adenocarcinoma. They still are not sure of the origin...wether it is a colon cancer or an appendix cancer...but according to the specialist I am seeing...it makes no difference because the signet ring behaves very much like an appendix cancer. My tumor was in the cecum...coming from the appendix but growing inside the colon...I was lucky, had it grown entirely within the appendix...it would have burst and spread cancer throughout my peritoneum. It did go to 4 out of 18 lymph nones tested. I did do 12tx ... 6 months of Folfox ... Finished up in January. I wound up with neuropathy in my hands and feet. I have had 2 clear scans since the n...but have been experiencing pain on my left flank and back...under my rib cage - since February. We also found out that since my diagnosis my CEA levels have gone up 5x higher than they were in the beginning. They are still low...but what is significant is that they have jumped up. The specialist that I am seeing wanted to rule out further spread of the cancer, so I just had a laparoscopic surgery on Monday. thank God... There was No evidence of spread of the cancer. They did do a "belly wash" - which is being tested for cancer cells... But for now everything looks good...no visible signs of cancer. I still have the side pain and now am dealing with the recovery from the surgery...it has been a little harder this time than the surgery last year. I got home from surgery on Monday night and have spent the last 2 1/2 days pretty much resting on the sofa. I go back for my follow up in a week and a half...hopefully I will get the official good news. The plan as far as I know it is to check CEA again in another 3 months...then do another cea and a pt/ct scan at 6 months....if all looks good the dr wants to do another laparoscopic in a year or year and a half. The key to this is to catch the signet ring cell progression before it gets too far along.

alex

lilacbrroller · July 2013

Stage IV warrior

Hi, all, My name is Karin. I'm 46 and have been alive fourteen months since diagnosis. 5 cm Rectal tumor (primary) that had grown into my pelvic area, lots of initial lymph node involvement, four liver mets (largest was 5 cm+) and four small lung mets initially. Not given a good prognosis at first - not a candidate for any kind of surgery. I will say that when I was diagnosed, it was a complete surprise. I was not sick at all, felt fine, and was very active - I was walking a lot and swimming 1000m/day. I had had slight but naggingly annoying digestive problems (not serious) that were misdiagnosed over the course of several years, so got a colonoscopy last May and then, the rectal mass was found and my life completely changed.

Had FOLFOX plus avastin for six months. Good results (Jan 2012) - primary tumor disappeared as did the junk in my pelvis, lymph nodes dark, two out of four liver tumors gone, the remaining two calcified and smaller, and a couple of the lung mets also disappeared. Dark pet. Initial CEA was over 700, and in January of 2012 it was 14. It dropped further to 8. Note: every scan (PEt, CT) showed a different number and position of my lung mets. that was weird... The oxaliplatin messed up my hands - now I have full functionality but my fingertips feel waterlogged all the time, like I've been swimming. At first after treatment, I couldn't put on earrings or hold a pencil, but now all of that is restored, which I'm grateful for.

Went on maintenance Xeloda - first a baby elephant dose of 4000 mg/day, two weeks on, one week off, and then reduced to 1000 mg/day metronomic. During this period I sought several second opinions - MD Anderson, Johns Hopkins, U of Pitt, seeking surgery, and applied for clinical trials. Was rejected from the trials, and also from surgery. Hopkins at least gave me a "wait and see."

Tumors slept nicely until June 2013 and they woke up. CEA climbed to 21. However.. I also sought a 5th opinion and followed Pete and Ren to Dr. Nesselhut's clinic in Duderstadt, Germany via Dr. Chang in the US/NYC. Yesterday I had my first dendritic cell injection in New York!! I opted for the Newcastle virus (a/k/a chicken flu). So we'll see. I do hope it works, and understand that it is not a miracle cure. I will be blogging about my experience separately on this site.

So that's my situation. Personally, I like gardening, travel, reading, television, movies, and walking. and I"m an Earth sign.

glad to know you all!

- Karin

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