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Status Check Call

Phil64's picture
Phil64
Posts: 455
Joined: Apr 2012

Hey, I have an idea.  Wouldn't it be nice to see everyone's status in a single list?  If we post a Status Call on a monthly basis we can each comment on it with a short summary of our status... 

 

Our status should include Name, Stage, Current Status, Current Hopes

 

It would make tracking and sending out positive thoughts / prayers a lot easier for me.  I'll post my status as a start and we'll see who all thinks this is a good idea.  Maybe we could post an update for those who can't get online as well.

Phil64's picture
Phil64
Posts: 455
Joined: Apr 2012

Phil64, Stage IV.

Status: Had a second liver resection done on 2/7.  I'm back to work and waiting for a 3/20 appointment with my onc. My last CEA (on 2/27) was 1.0

Hopes: I hope to continue healing from surgery and hope my CEA remains low and NO MORE RECURRANCES.  If I have to do chemo, I hope it WORKS and I can stay NED for a long time.

 

mrscrain's picture
mrscrain
Posts: 11
Joined: Dec 2013

Melissa, Stage II colon cancer

Status: surgery 07/12 resection to remove tumor

Hopes: to remain NED and for this to not be passed down to my children!

Matta's picture
Matta
Posts: 36
Joined: Jun 2011

Name:
Matta,

Stage:
Diagnosed after 5 years of complaining in oct 2010, stage 3c - Surgery and then 8 rounds chemo

Current Status:
NED, last CT in Dec 2013

Current Hopes:
Hoping to stay NED for as long as possible!

sdp's picture
sdp
Posts: 148
Joined: Jan 2012

Hi 

I am scheduled for a second liver resection due to a recurrrence - single met approx 2.5 cm in MRI and 1.6 cm in ct-pet.

my first liver resection was billboard with extensive mets - that was done aug  2012.

that was extensive and i was in hospital for 15 days and thereafter further 39 days before I could catch a flight back.

will it be easier the second time around ? Doc says the second time around the recovery will be 7 to 10 days in hospital and another 7 days post hospital before I can take a flight ! 

how was your second resection recovery in comparison to the first surgery recovery ? 

fatbob2010's picture
fatbob2010
Posts: 392
Joined: May 2012

FatBob2010, Stage IV.

Status: Had a second liver surgery done on 2/13.  I'm planning to go back to work 3/17 and waiting for a 3/31 appointment with my onc. 

Hopes: I hope to continue healing from surgery with NO MORE RECURRANCES.  If I have to do chemo, I hope it WORKS and I can stay NED for a long time.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Abrub - Appendix Cancer Stage IV

Remission since treatment ended in April, 2008.  Hoping to stay that way!

Semira's picture
Semira
Posts: 278
Joined: Mar 2012

Name:  Petra (aka Semira)

Stage: Caregiver to husband (Thorsten) with Stage IV since Nov 2011

Current Status: NED, last CT in Dec 2013

Current Hopes: if the next bloodwork in 3 weeks is ok and the CEA stays low we will be off for travel and vacation to India again 

biglaur's picture
biglaur
Posts: 66
Joined: Apr 2010

Stage: Stage IV,  diagnosed 11/06 completed ALL treatment 08/09  Just had biannual blood tests/scans...STILL NED!!!!!

 

Hopes: Staying NED...Cool

 

lp1964's picture
lp1964
Posts: 852
Joined: Jun 2013

Was diagnosed with rectal cancer 5/13. Radiation, chemo, surgery 10/13. There was no cancer in the specimen or the lymph nodes. Finished chemo 2 weeks ago, organs look clear, but there is some abnormality in my right seminal vesicle(a gland next to the prostate). Will have PET scan and hope everything is ok.

Laz

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Lisa2012, Stage IV diagonosed 3/12

Current:  treating with eurbuitux every Tuesday since the first week of January this year.  Irinotacan every other Tuesday.  Today was only eurbuitux.  Scheduled for a PET on 3/10.

Hopes:  praying this course of action is successful and that I continue to feel as well as I have throughout.  I have so much to do this year!

marbleotis's picture
marbleotis
Posts: 491
Joined: Mar 2012

Name: marbleotis

Stage 3b / signet cell

Current Status: 2 years , 2 months NED

Current Hopes:

(1) remain NED and use what I went through to help someone else. 

(2) I will be attending my younger daughter's college graduation in May (with highest honors) - there was a time I thought I may not see that day.

annalexandria's picture
annalexandria
Posts: 2251
Joined: Oct 2011

Ann Alexandria

Metastatic carcinosarcoma of the colon (not enough cases, so no official staging; essentially stage 4)

NED since 2011

Hoping to stay that way for as long as possible!

mukamom's picture
mukamom
Posts: 357
Joined: Oct 2010

Mukamom, caregiver to Robert

Stage IV cc, dx 12/2008

Currently receiving trial drug TRC 105/ Avastin....cycle 23.  Spike in CEA last lab. CT scan tomorrow. Results in a week.

Keeping positive b/c worrying about the what ifs won't help Robert.

 

TheLadySkye
Posts: 86
Joined: Oct 2013

Name: TheLadySkye

Stage: Stage 2b Small Intestine Cancer

Current Status: Surgery at the end of August.  T4N0M0.  Currently undergoing FOLFOX chemotherapy 8 of 12 so far.  Just had the 5FU bolus removed because my labs kept tanking.  Currently NED.

Current Hopes: That the doctors are correct when they say that the statistics regarding this rare cancer don't apply to me at age 39 and that my prognosis is better than what the literature would suggest.  That the surgery was successful and that the NED means that they got it all, that nothing escaped, and that no stray cells went elsewhere to propagate.  That the chemotherapy will wipe out anything that remains, and that by some miracle this will constitute a cure for a type of cancer that doesn't seem to have many of those.  That some day this pain and fear will be a distant memory as I grow old and live a healthy, happy life.

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

I was stage 3 on3/2008,then NED untill 4/2012 at which time I became stage 4.Now i'm having another recurance. Tumers have been in colon,liver, spine.It was colorectal cancer in the beginning.I am now testing to find out where this one is.

Hooley's picture
Hooley
Posts: 153
Joined: Aug 2012

Current

3 1/2 years since dx.  bowel with mets to lungs. Successful bowel surgery  Chemo consistently.  Had recently shrunk thanks to erbitux. Now larger of three tumors grown back to 62mm.  No more erbitux No lung surgery yet.  Have to get under control

Hopes

seeing dr re microwave targeted surgery. Perth do cyber knife.  Don't know if candidate.  Not sure which direction to go.  Still praying for a miracle

bakerwoman's picture
bakerwoman
Posts: 2
Joined: Mar 2014

Carol, caregiver to husband Jim, who was diagnosed with Stage 3 colorectal cancer on August 30, 2013. Partially resected tumor, just finished eight rounds of 5/FU chemo. CT scan on Wednesday morning, March 5, of Jim's chest, abdomen, and pelvis to see if the chemo slowed things down. This is palliative care only -- the cancer was present in all eleven of the lymph nodes that the surgeon removed.

My goal is to enjoy all the time we have left together, and to not have my sweetheart be in any more pain. We've grown very close over the last six months of trying to get Jim recovered from his surgery. He still has an open abdominal wound after all these months, because the chemo, of course, pretty much stopped his ability to heal. CRUMB! We've only had ten years together, but he was well worth the wait. We married in our fifties.

You guys are going to be a great help to me as my husband gets sicker. He's not much of a talker, so I have to get support from other people.

Easyflip's picture
Easyflip
Posts: 85
Joined: May 2013

This hits home because I'm stage 3 diagnosed march of 2013. I've been married 30 years. You know what? We found our soulmates and even 10 minutes with them is more than many people can say. I'm puttingngood thoughts out to the universe for both of you.

Roddy2
Posts: 21
Joined: Dec 2012

Roddy2 (Ian)

Stage4 MCRC - Dx June 2012 - mets to bowel, liver & lungs.

current staus - 8 sessions of Folfox - 33 sessions of Avaistin, leucovorin & Flouroucaracil (ongoing fortnightly). Participated in "Congo" trial for 16 months. 

Future - stay as healthy as I am at the moment with fortunately very few side effects. Hopefully get involved in further trial involving DNA. Keep promoting early testing through work places and local community groups through Bowel Cancer Australia

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 449
Joined: May 2012

Momof2plusteentwins - diagnosed April 2012 Stage IV-Rectal cancer with single met to liver and 12/23 positive nodes. Chemoradiation for 4 weeks, surgery June 2012 to remove rectal tumor, liver tumor, and gallbladder. 6 months of Folfox with no delays. NED since.

CT scan March 12th, I hope to remain NED.
My daughter is pregnant with twin girls, due in May and my twin boys are Juniors in High School. There is so much that I have to live for!

Sandy

suekell
Posts: 11
Joined: Mar 2014

Had bowel resection September 2011. 2 months ago was told cancer had spread to peritoneum, stomach and a lymph node in chest area. Am receiving palliative chemo as i am stage V1 advanced. Just had chemo #3.

My hopes for the future are to have a good response to treatment and be able to bear the side effects. 

thxmiker's picture
thxmiker
Posts: 1223
Joined: Oct 2010

HI All!

 

Stage IV, 3c   Colon Cancer, Peitoneal Cancer, and Rectal Cancer   - Round 3 of Chemo about to start - Round 6 of Surgeries to follow.  I just got my hydroponc system to work.   It is a small pump and gravity fed after that.  I will not stop living life or growing as an individual. Cancer is just an inconvient fact for me. Eating real food, showing others how to cook, and grow real food is my current life mission.  Food is our medicine.

 

Best Always,  mike

 

Nana b's picture
Nana b
Posts: 2903
Joined: May 2009

Second round of chemo, first in 2009, remission since August 2009, then April 2012, put on Xeloda.  April 2013 CEA up to the 400s, CT showed 3 mets to lungs one to liver.  Put on Eributux, Xeloda and OXY.  CEA dropped to the 150s, then went up 7.  CT Scan today and CEA numbers should be in soon.  Not a candidate for lung surgery with a met to the liver.  Hangin in there, hope scan shows decrease and CEA is a fluke.

ONC called CEA up to 194 update. Scan done yesterday, get update on Tuesday. 

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Stage IV dx 02/06/2010

Colon/ureter/liver resection Dec. 2010

liver resection 05/2013

sigmoid colon resection 09/2013

have been on chemo's since diagnosis, only break from chemo's was before and after surgeries, those were nice vacations.  Most chemo's have stopped working, so getting a tad worried as currently have 7 Mets in the liver again.  Also have tumors in my lungs 3 on each side, but we don't call them cancer since I was advised it wasn't smart to get a biopsy and be sure it's cancer because then surgeons would be less likely to do any surgeries if they were cancer tumors.  So I just say I have spots in my lungs, that are being observed.

Winter Marie

PatchAdams
Posts: 272
Joined: Nov 2011

Name:  P. Adams

Stage: Now Stage IVa 

Current Status: NED with PET/CT in April.  Normal CEA (Highest ever was 6.4 when I had the liver met but studies have shown CEA to be more indicative of liver activity than activity in other areas.) 

Current Hopes: I PRAY that my liver resection two years ago was curative and that the cancer never returns. It's been over 5 years since my original dx and I've had only the one tiny met.  I am KRAS Mutant which newer studies hint might mean better odds. 

TxKayaker's picture
TxKayaker
Posts: 169
Joined: Jun 2009

Name : Mike

Stage: 3C

Surgery April 2009 , 12 rounds chemo, Still NED ,

lilacbrroller's picture
lilacbrroller
Posts: 284
Joined: Jun 2012

Stage IV SOL.  Primary tumor in rectum, mets to liver, lungs, and adrenal gland. Nearing my 2 years alive with cancer milestone.

still alive and kicking though. I have a fantastic immune system, so I'm told, and have (touch wood) never been sick because of this cancer.  Blood tests always great. I still work and lead a fairly active life, but I have less energy (and less hair) and cancer is definitely kicking my butt. The adrenal met has given me lucious nose hair and occasional pain in my right side. 

no surgery ever. no radiation.  FOLFOX in 2012. Great results. Went on Xeloda for maintenance in 2013, and then tried dendritic cell therapy. This didn't work. 2014 went on irinotecan/camptosar and erbitux - this also did not work.

so now I am trying for clinical trials, for the new PD-1 drugs or really anything that might have good results for me. No appointments yet but I am grateful for my very supportive oncology clinic.  5FU doesn't work anymore, and I don't want oxaliplatin again.  Onc could give me sitvarga (sic) but at this point, while I am still physically healthy, I want to offer my body to science and see if I can benefit.

until I'm accepted into a trial, I will be chemo free, which could be good and cleanslng. 

hate this disease! arrgh.

- Karin

Trubrit's picture
Trubrit
Posts: 1472
Joined: Jan 2013

Diagnosed Nov 2012 Stage 3B

Seven months post treatment. 

CT scan scheduled March 17th.

Hope for a long and happy life in which I can help others who are nwely diagnosed and going through treatment. 

thingy45's picture
thingy45
Posts: 581
Joined: Apr 2011

diagnosed after 6 years of complaining march 2011, resection surgery on April 25 ,2011. Refused chemo and radiation. 

Stage 3b. I changed my life style and eating habits 

CEA test every 6 weeks around 1.0. Ct scans every year Still NED,

hoping for a long life with no recurrences.  I live now one day at the time, looking after a very ill daughter and her family.

UncleBuddy
Posts: 626
Joined: Aug 2013

Uncle Buddy is my 49 year old (will be 50 in a few months)brother and he's currently stage 4 with 1 (3cm) met to the liver and 5 to the lungs. He was diagnosed in 2011 with stage 2a rectal cancer and had an anterior resection. He had chemo/rad before the surgery and chemo after. I don't remember which chemo drugs he had then. He finished his chemo in 2011 and everything looked good. Less than a year later his CEA increased. They did a PET and CT and saw the mets, so he restarted chemo. In November/December he was hospitalized 3 times. Once for clots to the lungs where he needed emergency surgery, once for fluid around the heart and needed emergency surgery and another for rapid heartbeat/swelling in the leg. He was waivering as to whether to restart chemo, but decided to do it at a lower dose. He's doing the 5fu pump and Leucovorin for now (every other week). He was getting the erbitux and irinotecan, but it made him very sick with no quality of life. He decided that after he gets a few rounds of chemo, he will start adding the other meds back SLOWLY to see how he feels. Right now it's all about quality of life and keeping the tumors manageable.

He just had a nuclear stress test and we found that he had a mild heart attack sometime in the last couple of years. Dr thinks it may have happened when he had the fluid around the heart. So he does have damage to the heart. He has him on meds and is monitoring him closely. 

He is also having issues with fungal infections, but we seem to be getting that under control. We are also having trouble with his INR levels. We have to keep adjusting his coumadin and he is test 2x a week for his levels.

He is going through all of this and is intellectually disabled. He takes everything with a grain of salt. I've tried to get him to eat better and exercise to get him healthy, but he keeps telling me he wants to enjoy whatever time he has left. He lives with our dad who is slowly developing dementia. I go to their apartment several times a week (they live about 30 minutes away) to set up all his pills in his pill sorter and check on the two of them. I'm emotionally drained, but it's nothing compared to being the patient.

I am hoping that he will stick around for a while. He's my little brother and I want him to be able to enjoy life. For now, I'd be happy to see him smile and stay healthy while undergoing treatment. No more hospital visits, PLEASE!!'

Lin

PS He also had Non-hodgkins Lymphoma in 2000 and beat that. He had his spleen removed and did a chemo treatment called CHOPS. 

impactzone's picture
impactzone
Posts: 435
Joined: Aug 2006

Chip

Stage IV

going in for scan on Monday. Dx 2006 with liver and lung mets. Colon surgery, 4 thoacic surgeries, liver surgery and chemo and I am still on the right side of the green. Kinda suffering severe scanxiety

Sephyrob
Posts: 6
Joined: Jan 2014

How long have yu been on chemo for? 

 

My husband dx stage 4 colon Nov 2013.  He's 46. 

rare tumor found in colon with regular colon cancer mets to liver. Rare tumor removed

chemo 5fu and irinotecan since feb 2014.   

Fels good, no pain just low energy.  

April 9 th PET scan.

I keep telling him that there are stage 4 survivors. He just has to believe!!!!!

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Gail, diagosed stage 1 colon cancer 11/21/07.

NED since then.

Sometimes severe troubles with constipation and blockages, hospitalized several times for that On daily pain medication.

Recently had a terrible episode that left me screaming in the bathroom for 3 hours. Appt. with gastroenterologist on 3/18 to see what's going on.

ron50's picture
ron50
Posts: 1287
Joined: Nov 2001

  Ron,dxed at age48 in jan1998. Aggresive stage3c into six nodes. Surgery and 48 sessions of 5fu and levamisole. No signs of cancer .since then but increasing problems with auto-immune disease of an unknown nature. Severe psoriatic arthritis ,type two diabetes and nephrotic syndrome of the kidneys as well as 10.000 plus premature ectopic heat beats a day.Currently on powerful immuno-suppressants. Methotrexate and now cyclosporin.  Hope ? I'm a realist. :)   Ron.

ron50's picture
ron50
Posts: 1287
Joined: Nov 2001

Just turned 64. Ron.

UncleBuddy
Posts: 626
Joined: Aug 2013

Keep up a good fight. You are an inspiration.

Lin

Coppercent
Posts: 143
Joined: Jan 2012

Penny 

Diagnosed July 2011, stage III

Chemo/radiation...LAR...6 surgeries...illeostomy..... Reversal....Xeloda...FOLFOX....XELOX....recurrence May 2013...last surgery June 2013.  Currently watching scans. Next PET results 3/13/2014. 

Training for a half marathon and 12K in October 2014.  Hope is I finish in a decent time. Okay maybe just finish.

serenity101's picture
serenity101
Posts: 81
Joined: May 2013

Serenity

Stage IV     Diagnosed stage IV with numerous liver mets in May 2012

Looking for clinical trials      Have done FOLFOX with Avastin (which did a good job of shrinking the tumors), Irinotecan with Erbitux, and Stivarga.

Hoping to find a clinical trial that works.

Hoping for a miracle cure.

Hoping my family knows how much I love them.

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

Ron

dx stage 4 apr 2011

Have been in hospice for past two weeks and it's been the best 2 weeks of pain relief ever. 

Hope to spend the remainder of my life pain free, treatment free, eating good food and visiting with family and friends

peace be with you all

Ron

annalexandria's picture
annalexandria
Posts: 2251
Joined: Oct 2011

I'm very sorry to hear this news, but also so glad that you're getting good pain management and enjoying time with your family.  I hope you have many more days ahead of you that are peaceful and full of love.

AA

Phil64's picture
Phil64
Posts: 455
Joined: Apr 2012

Peace be with you too Ron.

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Stage4 mCRC - dx March 2010 - sigmoid near total obstruction, mets to infiltrated mesentery, coined sized spot on peritoneum and conglomerated para-aortic nodes; unbiopsied shrinkable stuff in liver and lungs.

current staus -  tamping down 7 month surge of CA19-9 and CEA with oral immunochemo, lots of supplements and IV vitamin C. Looks good, feels good.

Plan is to stop metastasis, chew up residual cancer without chewing up too much bone marrow if possible, and cut out anything that becomes visible on CT.  Long before the CEA got above 14 in 2011, we knew it was time for a second surgery to get the para aortic nodes out.  On CEA surges under  5,  over time we've been able to dissolve several persistent lesions out of the CT scan, and back to tight baseline CEA trends, ca 2's. The latest CEA surge peaked almost 6.  Long term challenge: avoiding embolisms while not wearing wife's bone marrow out. Her combined treatments are evolving, getting stronger in effects and her bone marrow is getting weakened by long, large cumulative chemo even at her reduced doses.

pluckey's picture
pluckey
Posts: 471
Joined: Jul 2009

Peggy

Stage 4 DX March 2009

Current:  NED

 

Hopes:  To NEVER EVER EVER have to go thru this shiz again!!!!!!

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

Stage IIIC rectal initially - now Stage IV metastasized due to lung nodule found in 2012.  I had my most recent annual ctscan this past Monday.  After much waiting (3 days!) I got the great news that I'm still NED.  I'm one of the lucky ones.  My current hope is that all can be NED.

Best to all, Vita

 

Hooley's picture
Hooley
Posts: 153
Joined: Aug 2012

Hi there, how did u get rid of lung nodule?  Size? Etc

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

I replied to your pm.

Helen321's picture
Helen321
Posts: 776
Joined: May 2012

Name:  Helen321, Stage III

Current Status:  A big NED!  Officially one year out of surgery with ostomy. 

Current Hopes:  A vacation to the bahamas would be nice and staying NED!  I just like saying that . . .NED!  I know why Danker says it now, it sounds nice to say.

 

 

Sandi1's picture
Sandi1
Posts: 277
Joined: Aug 2008

Name:  Sandi1

Current Status:  Caregiver to my husband (Mike) diagnosed 8/08 Stage IV Colon Cancer, surgery 10/08, chemo since 11/08.  Has had all chemos for Colon Cancer, and has become toxic to all.  Found a small tumor on his spine 2/14 and has had radiation which has worked.  Now he has pain on his left side ribs and health insurance refuses to pay for a PET scan to find out what it is.  We are off to Philly next week to see if we can find a clinical trial.

Current Hopes:  To just have a few more years with my husband without thinking is this the last time i will ever do this with him.  Trying to keep our hopes up, i know the future looks bleak for him.

Sandi

 

annalexandria's picture
annalexandria
Posts: 2251
Joined: Oct 2011

I hope you and Mike can have many more years together.  I do know that bone mets are usually not lethal, and can be managed for a long time with radiation.  Keep us posted about your search for a trial, I'm sure many hear will want to know how that goes.

Hugs and strength to you both~AA

mdm2
Posts: 17
Joined: Dec 2013

Mdm2

diagnosed stage 4 small bowel adenocarcinoma after emergency hemicolectomy with mets to peritoneum and node involvement dec.2013

current status on capox treatment one more round to go then get scanned and checked for eligibility for HIPEC

current hopes-beat cancer and watch my children grow up. 

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