2014 member update -- for all of us--please post!

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Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

2014 member update -- for all of us--please post!

Postby Regan » Sun Dec 21, 2014 4:49 am

So many I long to hear from. I know I'm not alone in wondering how all our friends are doing...mentally, physically and or emotionally.

There are so many I want to name but am afraid I will miss listing one. So... How about this end of Year thread for each and everyone one of us to post just how they are, little things or big, happy feelings or sad, cancer status, family ...whatever you wish....just post!

I hope this thread is 10 pages long before the end of the year so we can all see/hear you!

--Perhaps post a link to your latest thread that shares your journey or current situation?
--Maybe a few paragraphs of how you are feeling?
--Or maybe just post "hello, still logging in to check on everyone--just not participating recently.
--just post whatever is on your mind

I love and care for you all....our family here.

This place is just like a real family..."cousins" we don't hear from much but would like to, "cousins" who keep us updated...."cousins" who post occasionally.... On and on.

So.... Hit post reply and let all know about you? Whether you posted in another thread 5 min ago or 5 months ago.
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: 2014 member update -- for all of us--please post!

Postby Regan » Sun Dec 21, 2014 4:57 am

Hi all!
My DH is currently NED (scan 01/08/15)
He is struggling with abdominal issues (massive scar tissue) and new plumbing issues..and the fatigue of what he went through to become NED still has a firm grip on him. But...we both are grateful and know it could be a lot worse.

This is the first year in our 40 Christmas together that we did not put up one decoration. This is profound because Billy is a a Chevy chase during the holidays... But we promised each other that every light outside and inside would get lit next year.

Life is being lived
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

esk2poo
Posts: 499
Joined: Sat Dec 17, 2011 7:17 am
Location: New Jersey

Re: 2014 member update -- for all of us--please post!

Postby esk2poo » Sun Dec 21, 2014 5:55 am

MED 3.5 years an alle well on the Cancer front. Mentally a mess but that's my problem. I am on here 6-8 times a day reading up but don't post much anymore. Survivors guilt, don't know but it suck to see so many suffering. Broke down this morning reading about the 23 year old just diagnosed stage IV. To Effin young. Hope all is fine with everyone else and you are enjoying the holidays as best as possible.
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

cmrl
Posts: 174
Joined: Mon Apr 21, 2014 8:39 pm

Re: 2014 member update -- for all of us--please post!

Postby cmrl » Sun Dec 21, 2014 10:42 am

Hi.....I too check in regularly, but don't post my concerns because I either feel too overwhelmed, or feel my problems pale in comparison with others.
I had my 9 month post chemo appointment with the oncologist on Friday, and just saw some of the lab results online, which look good. My WBC are finally in normal range, and the Platelets went up a bit. I always have the labs drawn after seeing the Oncologist, and have to rely on the nurse sending me the ones that aren't posted in the mail. In Sept. my CEA was 3.9, and when I asked him about this on Friday, he just said it's in normal range. He spent most of the visit educating his Resident about CC, and I try to catch what I can understand. When I asked him about the CT I had in October , he said he had called me on the phone, and looked up his documentation on the computer to prove it. I'm so happy that the report is also online, so I was able to read it myself, but I know he never called me. The CT was clear, and my spleen is shrinking, which I guess is why my platelets are finally increasing.
I guess my point is that this forum has been a major source of education for me. I am not sure what to do about my treatment, since I would like to have a dialog with my MD. It seems silly to switch now, since I'm not in active tx, and I am also enrolled in a research study. If I have a recurrence, which I guess is probable, I should probably switch Oncologists.
For now I'm good, and I want to wish everyone on this forum peaceful holidays, with at least a brief respite from the battle with this illness, both physical and mental.
Resection of splenic flexure 7/24/13
T3N2BM0, Stage 3c,12/29 nodes
Folfox x12 9/13-3/14
CT scan 4/14, enlarged spleen, otherwise clear
CT 4/15, spleen WNL.
6/17 3 cm benign polyp at ileocecal valve, awaiting removal

DarknessEmbraced
Posts: 3554
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 2014 member update -- for all of us--please post!

Postby DarknessEmbraced » Sun Dec 21, 2014 11:02 am

I'm a month post surgery. My staples have been out since December 2nd and my steri-strips off since December 13th. I'm still having a fair amount of pain some days. I use my heated gel pack fairly often and take tylenol. If my pain is really bad and tylenol hasn't helped I take a dilaudid. My bowel movements are all over the place. I never know from one day to the next how they will be. I take metamucil and a stool softener twice a day. I drink lots of fluids and eat more fiber. I have more energy than earlier on but have to be careful not to overdo it. I was hoping to have my pathology results before Christmas but they still aren't back and won't be until sometime in January. Hopefully they will be back by the time I see my surgeon on January 6th. Apparently, it's normal for results to take so long here. My boyfriend's stepfather had colon cancer along with a colon resection. He had to wait a month or more for his pathology results! Everything is so slow here! I'm thankful that my surgeon pushed to have my scans done quickly and save a spot for my surgery on November 20th. It's hard not knowing what the next step will be. I post sometimes with questions but lately mainly just respond to the posts of others. I wish everyone a Merry Christmas and a Happy New Year! I would be lost without this forum! It helps to be able to post on here and read other posts! There are so many supportive people and so much information! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: 2014 member update -- for all of us--please post!

Postby JDinNC » Sun Dec 21, 2014 12:46 pm

Merry Christmas to all...

I'm happy to report that I'm feeling well. Though I'm still dealing with headaches and now lower back pain when I'm in bed. I'll be seeing my doctor tomorrow with a long list of questions for her. I'm trying to avoid posting on the board since I have nothing to offer though I read the post daily. Since I really know nothing about my cancer I can only live day by day like the rest of us. My hope for the New year is that I can continue being NED..having my next PET 2/3. That my family will try to understand that I have not "beaten Cancer" only that the victory is in my favor right now. And that when I try to tell them that I hope to make it to 5 years, I'm not being negative, but trying to get them to understand that I'm fighting a continual battle take can take me at any time. I have no one to talk to that really understand the serious, everyone keeps telling me ."You'll be fine" If it wasn't for the knowledge and experience of the folks on this board, I would be lost. We have all joined forces as an "army" against this disease sadly we have lost some " soldiers " this year and years pass. But we have their spirit to keep us strong so the more we learn and contribute the stronger we will become against this disease.
December is not a good month for me with my birthday, my dad died on the 17th/17 years ago and both my mom and dad's birthdays were on Christmas eve...and as I'm typing this I'm waiting to be picked up to go to a neighbor's funeral who died from lung cancer. So it's been a very tearful month....I've never been a emotional person but since cancer I'm now always tearing up on the littlist thing.

My wish to all is never ever give up no matter how bleak things may look. It's your faith, strength, hope and courage that will guide you through it all.


Jan
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: 2014 member update -- for all of us--please post!

Postby Stanfordmom » Mon Dec 22, 2014 4:11 pm

Still checking the board at least once every day.

No major updates from me. After my surgery in Sept. At Sloan, I have been having FUDR to my HAI pump and folfiri. Continue to fight!

merry Christmas and Happy New Year to you all!

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

wildergal
Posts: 3
Joined: Wed Nov 06, 2013 5:24 pm
Location: Hudson Valley, NY

Re: 2014 member update -- for all of us--please post!

Postby wildergal » Mon Dec 22, 2014 7:01 pm

Hi fellow colonists, I'm the "senior citizen" (active 74 YO newlywed) who was diagnosed Stage 3A in October 2013. Following surgery, I decided to forego chemo. Was asymptomatic all year Until routine colonoscopy revealed a gotcha--a ring of polyps all around the incision. I freaked out for 2 days then recovered my equilibrium. Docs at Albany Med say it "doesn't look like cancer" however it/they must come out. I'm scheduled for transanal microsurgery on 29 January--there's not enough colon left above to do another resection. Post op biopsy will tell the true story.

I appreciate all the warriors who post here more than I can say. Your stories are the kind of inspiration that the non-cancer world can't provide. I lurk every day but every so often I will drop in. Sending good vibes and waves of concern,

Wildergal
Dx 10/13 T3L1m0
Laparoscopic hemicolectomy 11/13
NED 11/13-10/14
(More to come)

Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: 2014 member update -- for all of us--please post!

Postby Regan » Tue Dec 23, 2014 11:37 am

Bummer, 630 reads only 7 posts!
Pog? NWgirl? ALL of you!!!
Really hoped this would be a 10 page thread!
Is great to read those who did post!!!!
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

User avatar
dianetavegia
Posts: 2724
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: 2014 member update -- for all of us--please post!

Postby dianetavegia » Tue Dec 23, 2014 11:55 am

I've actually got a fun blog that I post on every day at http://www.justalittletalk.com and you never know what you'll get, but it's more fun than putting a few lines at a time on Facebook.

My tests in Oct. showed me NED since my small liver met was removed (hepatic resection) in April 2012. There was a note at the bottom that said something like 'no change in the 2mm nodule lower left lung noted in the CT scan 6 months ago'. That still freaks me out since the previous radiologist never noted the nodule and the new radiologist would look at Jan. 2009 but not all the scans and PETS to see when it appeared. My onc isn't concerned. The radiologist said he has no idea and it doesn't 'look like anything' to be concerned about.

Feeling awesome. CEA is hanging around 2.1 - 3 up and down (Labcorp high norm is 3.9 with a means of 4.7) but since I'm turning 64 next week, it's normal for me to have a slightly higher CEA. I'm slim to normal weight and thinner people have higher CEA's than larger people. Etc.......

I finally got my car back! Hubby found an used truck to buy. He's working 12 hour days, teaching but being paid as a para pro since there are no middle school math or special ed P- 12th openings in our area and he doesn't get many interviews being 67.

Shucks........ just go read my blog and you'll know everything there is to know about me. LOL!
Here's my Christmas tree and other decorations: https://www.facebook.com/media/set/?set=a.10152434654055919.1073741878.590325918&type=1&l=16d22d7c99

MERRY CHRISTMAS and a Happy Healthy New Year!
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

11 years since dx and 7 3/4 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

Dorat
Posts: 54
Joined: Sat Apr 05, 2014 8:28 pm
Location: Bradenton, florida

Re: 2014 member update -- for all of us--please post!

Postby Dorat » Tue Dec 23, 2014 12:59 pm

Finished my chemo four months ago and I am feeling great. My last PET scan was clear and my last CEA was 1.0 wich is great. I feel so bless I currently NED, I am awared that a recurrence can happen, but for now I live one day at the time. I am ready to celebrate the holidays with my kids and hubby.
37yr Mother of 4 girls and 1 boy
Dx 1-22-2014
Cc T2N2bM0 (37/47 LN)
Surgery 2-6-2014
Folfox for 6 months
Clean scan 6-10-2014
Finished chemo 8-18-14
Clean scan 8-25-14
Clean colonoscopy 2-26-15
Clean scan 3-9-2015 NED
Port Out 4-3-2015
Clean scan 9-9-2015 NED
Clean scan 2-28-2017 NED 8)

User avatar
teacher49
Posts: 183
Joined: Sun Aug 14, 2011 10:34 am

Re: 2014 member update -- for all of us--please post!

Postby teacher49 » Tue Dec 23, 2014 2:25 pm

Merry Christmas to all and even though I don't post very often, I follow all you with hope and concern.

I'm in-between oncology check-ups right now. 2.5 years out from end of chemo and 3 years from APR surgery in Fall of 2011. So far all is well on labs......no scans have been ordered....except I did have MRI prior to right hip replacement this past summer. MRI did note the remnants of old presacral abscess as still there following 2011 surgery but same location no difference.

Doing well, still teach full time. Only complaints are residual side effects of all treatments: numb feet from oxaliplatin, messed up, squashed, re-arranged pelvic organs from APR. I really don't want a bladder fix with mesh (cystocele)....since it is a major pain of a procedure.....but if I plan on living a while longer which I hope.....I may need it.

I do follow all of you because I'm trained to do that....the educational program that I teach in a community college is Cancer Registry, in which I train all the Cancer Data recorders who work in large cancer program hospitals....I train them to record all the correct facts for each cancer patient diagnosed. They record the patient's story: primary site, histology, extent of disease, treatment, follow up.

In 2011, I became one of the stories, and to make it more personal, my Program Advisory Board surgeon with whom I sat at the boardroom table, became my surgeon and I ended up on his operating room table. A great colorectal specialist FACS surgeon and I appreciated his honesty. Hated that I had to have a perm colostomy but I trusted him to do what he thought best with such a low rectal lesion.

Best wishes to all in current treatments and stay strong.

Barbara
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 12/21/2020

ab123
Posts: 120
Joined: Tue May 21, 2013 12:25 pm
Location: Boston

Re: 2014 member update -- for all of us--please post!

Postby ab123 » Tue Dec 23, 2014 2:27 pm

Thinking about 2 years ago at this time of year- I had LAR surgery the Monday after Thanksgiving and was mostly in bed through the end of the year. I remember being pretty anxious. Unlike so many, I haven't had any setbacks along the way. The treatment plan has gone as planned since diagnosis and I've had no recurrence or complications. I attribute my good experience to a few things, but probably mostly luck. But I also attribute it to great family support, excellent doctors and nurses at the Dana-Farber/Brigham and Women's Cancer Center, great health insurance, a supportive employer, exercise, and a positive attitude along the way.

This past summer I rode the Pan-Mass Challenge, a 160-mile bike-a-thon which raised $41 million this year for Dana-Farber. That was such a great experience, especially as a survivor. It gave me something to train for - I felt I was curing my own cancer and that of many others every day on the bike. It was a great way to give back and to be part of something larger than myself. In a way being part of that was a very positive thing that has come from my cancer experience.

Today I'm mostly back to normal, even though I feel like I've physically aged more than 2 years. I still can't eat too much roughage (leaves mostly, also undercooked broccoli, stuff like that), my feet still have neuropathy, but not bad enough to keep me from doing anything including biking and running, having to pee is a more urgent sensation which I attribute to radiation damage, and I have to poop a little more often. Today I take Metamucil (psyllium fiber) and Philips' Colon Health (a mixture of pro-biotics) and that seems to make the rectum-free life pretty manageable - almost normal.

I hope that my story can demonstrate, especially to newly diagnosed folks, that all is not lost, and that cancer diagnosis and treatment does not have to be a total disaster. You can make it through and be ok on the other side - and even through the process of treatment. I know for me this board has been a helpful resource to remind me that the experience of cancer treatment is not some abstract monster - it's real people going through a hard process one day at a time - and living! Of course we're all going to die one day, that's no surprise, but today we are alive and sharing our experiences and being strong together.

Much love to all and happy holidays!
Aug 2012: RC DX Stage IIIC, T3N2M0 by MRI - 38M
Fall 2012: Chemorad
Nov 2012: LAR - Path report: 0/13 LNs, tumor reduced to "microscopic foci"
Jan-Apr 2013: 8 rounds FOLFOX
May 2013: Ileostomy takedown, port removal
July 2013 (and since): NED!

User avatar
GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
Contact:

Re: 2014 member update -- for all of us--please post!

Postby GreenMonkey » Tue Dec 23, 2014 3:00 pm

Monkey ME here :)

I am good. My last scans (november 2014) were good. This time last year was NOT good.

Is there anything that can be done to treat neuropathy? My left foot is very bad. Nine months since ending chemo and it's getting worse instead of better. I fell the other day. It feels like my toes are curling under my foot. Anyway...

I miss Marco and Ezra, and so many of the others we have lost.

People want to believe I am "cured" .... I just try and focus on the day. Today, I am cancer free.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

megan120
Posts: 127
Joined: Mon Jun 16, 2014 10:54 pm

Re: 2014 member update -- for all of us--please post!

Postby megan120 » Tue Dec 23, 2014 3:44 pm

I don't post much, but thought I'd share anyway. Last week I had a vaginal cuff repair, apparently there was an abscess and a lot of necrotic tissue in there, pathology showed no tumor. Relieved! Waiting to start chemo again, waiting to go back to work. I see my onc on 12/30, and my surgeon 12/31. I think I am done with the Avastin since I am my incision isn't healing, and I will be having more surgery after radiation as well. All in all, doing pretty good.
36 year old mama to 3 (8,5,3)
Dx May 2014
Stage IV cc with met to cervix
2/134 pos LN
partial colectomy with temp ileostomy
folfox with avastin 6/14
Oct 14, hyst-mets to uterus, rt ovary implants
1/6/15 6 rounds of folfox
5/4/15 done with 28 tx chemo-rad
7/24/15 completion colectomy, NED!


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