New here, recently diagnosed, just had surgery but more to come...

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VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Fri Mar 09, 2018 3:50 pm

Hi everyone, I've been lurking here for a bit and decided to introduce myself. I was recently diagnosed with colon cancer and I'm still in disbelief. My husband and I already had a very difficult year in 2017, as my mom had serious declining health issues due to needing an organ transplant. We were constantly in hospitals, seeing doctors, having emergency ER visits, etc. During this sad and scary time we also lost one of our pets, my heart dog, in a very fast and traumatic way (who I am still mourning). My mom, thank goodness, was able to get her much-needed transplant just in time, and as her health as been improving we were looking forward to a better 2018.

Unfortunately that's not to be as I was diagnosed with colon cancer a few weeks ago. i'd been having intermittent lower left abdominal pains for months, and as it worsened I went to my GP, then my gyn to rule out reproductive issues, then finally a GI who had me do an MRI which showed "vague findings" so he wanted more tests. Before I could do them, my husband, mom and I took a vacation together to see family, where I ended up in the ER due to the pain (apparently the flight exacerbated my pain and it was worse than ever). They did a CT scan which showed thickening of the intestinal wall and some spots on my liver and they suspected it could be cancer. I got home and my GI quickly scheduled me for a colonoscopy which confirmed it, they couldn't even get the camera past the mass in my colon.

I just had colon resection surgery (laparoscopic) on 3/6. He removed about 12" (from descending colon) and saw more cancer on my omentum which he removed, and told me that means I am Stage IV. He wanted to biopsy the spots on my liver during surgery but was unable to do so. He wants to start me on chemo (I believe he said it would be Folfox) in a month, once I've sufficiently recovered from surgery. He said I would get a port and the chemo would be every other week.

I was already released from hospital and came home yesterday 3/8. I'm still in a lot of pain, they told me that laparoscopic surgery results in a lot of gas which has been true for me and quite painful. I've been trying to walk around per their recommendation which helps slightly. They had me on solid food already before I left the hospital, which I am tolerating, but I am having very frequent bowel movements which is annoying (but to be expected I guess).

I am 42 years old. I still can't believe this is happening. It was so hard to tell my friends and family "I have cancer." I don't know much of my family history on my father's side so I don't know if it is genetic or not. I believe I have had IBS for most of my life, but never went to a GI doc to get formally diagnosed (am kicking myself for that now, I should have gone years ago and perhaps I would have caught this sooner).

I do live in NY and have read on the boards here great things about Nancy Kemeny at MSK, so I am hoping to make an appointment with her. The personal accounts I have read here about her helping people give me hope. However I am still scared and saddened that this is happening. Plus I feel terrible right now since my surgery was so recent which isn't helping my state of mind!

Thank you for reading my story. I'm glad I found this supportive community with so many brave and amazing people.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

Mercy110
Posts: 105
Joined: Wed Aug 16, 2017 12:13 am

Re: New here, recently diagnosed, just had surgery but more to come...

Postby Mercy110 » Fri Mar 09, 2018 6:46 pm

So sorry to hear your story.
My mum is a current stage4 patient with lung mets. We do remember how hard and bitter for us to swallow the fact.

I hope folfox is helping you so that the spots in your liver shrink. There are lots of members here had liver mets but able to have surgery finally. Hope you are one of the lucky ones.

Take more rest and consume more food so you are prepared for chemo. Happiness is one of the weapons to cancer. Keep fighting and God Bless.
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3, 8.0, 9.8 CT Scan: Multiple lung nodules. Stage4.
2017-09: FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9), 3.6 (5/24), 19.2 (8/16), 22 (8/31)
2017-11: Stable CT
2018-03 to 05: Folfox Allergy, 5 months chemo break
2018-08: Folfiri started

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New here, recently diagnosed, just had surgery but more to come...

Postby Caat55 » Fri Mar 09, 2018 6:55 pm

Dear Veggie,
I am sorry you are joining us here but want to reassure you this is a good place. There are so many thoughtful people here who have and are experiencing something similar to you. Yes, the gas is very painful but it eased after about two days. I had an ileostomy and lived far from hospital so I spend more time in the hospital than you. The therapy you are describing involves two different drugs, one you receive at the clinic and a second you continue at home for about two days(mini bottle of chemo). I am going to be doing Xelox, chemo and oral meds. I hope you have someone at the hospital that can talk to you about the drugs, there is so much to understand and take in.
Ask your questions here and you will find answers and support, help with additional questions for your physician.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Sat Mar 10, 2018 11:54 am

Thank you both for your responses. I really appreciate and am grateful for the support. I'm going to do my best to stay positive during this difficult time (easier said than done at the moment since I'm still in pain from surgery!). I look forward to being a part of the community here.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

DarknessEmbraced
Posts: 3115
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here, recently diagnosed, just had surgery but more to come...

Postby DarknessEmbraced » Sat Mar 10, 2018 2:33 pm

Welcome to the group and sorry for the reason you're here!*hugs* I'm glad that your Mom is doing well after her transplant. I'm sorry for your diagnosis and for the loss of your dog!*hugs* I use heat for cramping which helped some. I hope your recovery and chemo go well!*hugs*
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

stu
Posts: 819
Joined: Sat Aug 17, 2013 5:46 pm

Re: New here, recently diagnosed, just had surgery but more to come...

Postby stu » Sat Mar 10, 2018 3:29 pm

Welcome to the forum .
You sound as though you have a good plan in mind. You can read my signature and hopefully it will give you some hope and encouragement .
Give yourself time to heal then you can find your focus for the next step .
Just for your information my mum has had her share of surgery but never had any symptoms from the actual cancer and it will be nine years since her diagnosis this summer. It’s mother’s day here in the UK tomorrow . She was round for afternoon tea and is in great shape enjoying life having an early celebration as she has a full day tomorrow !!
One thing my mum did was to reduce the impact Cancer was having on her life wherever possible . She stayed connected to her life and we had weekly projects to keep focused on living as you can easily get swallowed up in the whole thing . The days she needed to rest she did . She would read , watch the birds and daydream until she felt able to do more .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

User avatar
O Stoma Mia
Posts: 1426
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad:

Re: New here, recently diagnosed, just had surgery but more to come...

Postby O Stoma Mia » Sun Mar 11, 2018 2:23 am

VeggieLvr wrote:... I look forward to being a part of the community here.

Welcome to the forum, and I'm sorry that you find yourself in this situation.

The best way to become part of the community here is to create a signature that shows everyone your diagnosis and current status

Some tips on creating a signature are given here:

How to create a signature
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

Also, it will help if you can continue posting messages until you have enough posted messages to be promoted from "Newly Registered User" to a higher level with more privileges.

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Mon Mar 12, 2018 5:45 pm

Thank you again for all of your responses! It definitely makes me feel much less alone as I battle this.

@Stu thank you for your insight into your mum's mindset, I will definitely take it on board and reading her story in your signature definitely helps! Thank you so much.

@O Stoma Mia thank you for the tips and I will look into creating my signature, thank you!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

TeriS
Posts: 6
Joined: Tue Jan 02, 2018 3:37 pm
Facebook Username: Teri “Parker” Smedley

Re: New here, recently diagnosed, just had surgery but more to come...

Postby TeriS » Mon Mar 19, 2018 9:47 pm

My cancer journey is about 2 1/2 months ahead of yours. It’s diagnosed stage IIIC, laparoscopic surgery December 21st, port installed January 22nd, and FOLFOX started January 29th. I tried really hard to concentrate on one thing at a time. After removal of the ascending colon my focus was on healing from the surgery. This included finding food I could eat and enjoy and staying pretty much at home to rebuild my strength and staying away from the general public to avoid this year’s nasty flu. Everyone is different, but it seemed like from the surgery I turned a corner all of a sudden. When I was starting chemo I still had an issue with frequent diarrhea, but that did clear up. When chemo started I was scared, of course, but tried to take it a day at a time. I just did round four today of a modified FOLFOX due an allergic reaction.

Seriously, take it a day or two at a time, learn as much about the chemo as possible, be patient with your healing, take care of yourself, and when friends offer to help let them do so. It helps me to journal a little bit and calms me and lets me keep a focus on the important things. Best of luck in your journey!
12/1/17 - 5.5 cm mass found in cecum during colonoscopy
12/8/17 CT scan showed questionable regional lymph nodes and cecum mass only
12/21/17 - right hemicolectomy laparoscopy
1/4/18 - pathology report says T4aN2a — Stage IIIc

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Tue Mar 20, 2018 1:05 pm

@TeriS thank you for your reply! It's crazy how close we are in this process. I hear you about turning a corner, actually for the first week or so after surgery I felt horrible, but in the past few days I've been much better and a lot more mobile. I'm officially two weeks out of surgery today and find a feel a lot better when I exercise, so I've been getting on the treadmill every day. I walk slowly, but at least I'm moving!

Thank you for your great advice as well, everything you said makes sense and I will take it to heart. Taking everything a day at a time and being patient are things I have always had a hard time with, but you're right it definitely helps - when I think too far ahead I start to get anxious and worried. I am meeting with an oncologist next week at MSK so I am looking forward to that strangely enough! I want to feel more in control and as much as I am afraid of chemo, I want to start it asap so that I know we're actively working towards beating this disease.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

andelib
Posts: 6
Joined: Fri Dec 15, 2017 1:13 pm
Location: Turkey

Re: New here, recently diagnosed, just had surgery but more to come...

Postby andelib » Wed Mar 21, 2018 2:20 pm

Hi Veggie,

Staying positive is the most important thing and contrary to the general belief it requires to be well informed about your disease. I think very differently about cancer than I used to think a few months ago. The more I read and learn, the more optimistic I become.
As you can see from my signature my father was diagnosed with CC, with liver mets, had a lap surgery and same-day open surgery for his liver mets. All were clearly resected. He waited for about two months, got tested for DPD deficiency and started chemo (folfox). He is doing fine, didn't have any side effects of chemo for now, just mild nausea controlled by pills. He is not expected to lose his hair, maybe just some thinning. His bloodworks are just fine for now. We were too much afraid of chemo but he seems to tolerate it fine for now. He is very mobile, positive. He drinks wheatgrass juice every day, regularly consumes turmeric, ginger, propolis, home made yoghurt and kefir.

You are much more younger. After all, everyone is unique and more and more people are living with cancer just same as with other chronic diseases. People die of diabetes, of heart attacks, of strokes... And also there are alot of people who live with these diseases for long years. None of us know how much time we have left in this world. In my belief, the number of breaths we have in this life will never change, whether you have cancer or a perfectly healthy life. Moreover, we don't know what the coming years will bring in terms of cancer treatment. Don't be afraid, you are not alone and there are a lot people who are trying to find better treatments. Good luck, I will pray for you.
Dad Dx CC, Age 61, no chronic illness
Late Nov 2017: Anemia led to Colonoscopy + CT + PET + Ultrasound + Biopsy
Stage IV, Liver lesions
Jan 2018: Lap colon res and open liver res (15%)
No colostomy, 3 affected left nodes out of 30+
All clear margin, MSI High
Feb 2018: recovering, DPD Deficiency: Negative
March 2018: Started chemo (FOLFOX) via port (2-day pouch)
April 2018:(4/12 cycles completed)
Working full time, CEA 1.8, HMG 13.1
thrombocyte lower than normal, AST-ALT higher than normal

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Wed Mar 21, 2018 8:59 pm

@andelib Thank you so much for your insight, I appreciate it and I feel better after reading your words. I am sorry to hear your father has this disease as well. It's great that he's mobile and that the chemo hasn't bothered him too much. That's very inspiring to me, and your optimism towards cancer and managing it is contagious! I have read a bit about the recommendations for taking turmeric and ginger, I am unfamiliar with propolis so I will look into that now too. And I actually love wheatgrass so I ordered some of that now also. :)

I agree that being well-informed helps. My husband initially said "no googling!" lol because he didn't want me to freak out. I told him ultimately that I need to be prepared, and will feel better knowing things to expect rather than having to hear it from a doctor for the first time and not understanding what it means. I still have a lot more to learn but it helps me to feel more in control of the situation to be educated about it. More often than not I'm seeing stories of hope, encouragement and recovery. Finding this forum has helped tremendously as well, this is such a supportive and caring community, I'm so glad I stumbled across it!
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)

Caat55
Posts: 515
Joined: Sat Dec 23, 2017 6:01 pm

Re: New here, recently diagnosed, just had surgery but more to come...

Postby Caat55 » Thu Mar 22, 2018 5:45 pm

Doctors, nurses and some friends said no googling to me as well. This group is just the opposite, real people and helpful insights. I experienced a side effect today during infusion and would have freaked out had I not read another member's post and seen he had same thing it is was okay, felt like swelling in throat.
Ask away, look at those farther ahead and don't be surprise when someone is looking over your shoulder.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

VeggieLvr
Posts: 58
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: New here, recently diagnosed, just had surgery but more to come...

Postby VeggieLvr » Thu Mar 22, 2018 6:17 pm

@Caat55 thank you! I agree everyone is so helpful and insightful here, it's wonderful. Such a great community and definitely helps to feel less alone and have the support of people here!

I know I have a difficult journey ahead (especially as someone who is very squeamish about doctors, needles etc.), and it helps so much to read the stories of others and to get such great encouragement. I almost feel like I'm on a "break" from it all at the moment since I am still recovering from surgery and just in a waiting phase before meeting with my oncologist for the first time next week. I'm eager to get things moving and start the process of treatment, but I'm also trying to appreciate this time to rest and do research as well - while also doing my best to stay positive (which is easier some times than others!).
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)


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