Intro, and please give your feedback

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TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Intro, and please give your feedback

Postby TinaFish » Thu Jul 25, 2019 11:18 pm

Hello, everyone. I've been lurking for a couple of weeks now and I would really love to get feedback from all of you knowledgeable people!

I'm a 45-year-old single mom (ex husband died a few months ago) of a 7-year-old boy and a little girl who's turning 3 next month. I have one sister, who's not capable of raising children, and my father is 82 years old. I HAVE to beat my disease, or I don't know what will happen to my children.

In March 2018 I had a very upsetting situation happen with my beloved dogs. The following October, my mother died. Two months after that, there was a little bit of blood in my poop. I figured it was due to all of my stress - probably hemorrhoids. Weeks went by with no blood, and then there was a day or two of blood. After that, another 3-4 weeks with no blood. This kept happening - blood for a day or two, then no blood for weeks. Went to my general practitioner, he said it's probably internal hemorrhoids. His referral to a GI doctor took about a month to come in, and when I finally saw the GI dr, he said I probably had polyps, and he scheduled my colonoscopy for October 2019. October! Annoyed by the blood, I decided to see a private GI doctor and pay out-of-pocket. He did a digital exam on me and said I probably had diverticulitis. He said he could do a colonoscopy on my right away for $2000.00, or I could just go to the hospital and explain my symptoms, and the hospital would do the colonoscopy at no charge.

Went to the hospital June 7, thinking I'd be home the following day. They did a CT scan, and the results were shocking - rectal tumor, metasteses to my liver and lungs, omg... what?? But I'm so healthy! Never had a health problem in my life! And I'm too young for rectal cancer! Are you f****** kidding me? Is this just a nightmare that I'm going to wake up from soon?? I spent ten days in the hospital (that's how long it took for my insurance to approve my first chemo treatment), and it was like a combination of jail and hell. To rub salt in my wounds, the hospital bed was so hard that I was literally crying from tailbone pain. During my hospital stay, I received a colonoscopy, a port in my chest, and IV treatment with oxaliplatin and 5FU. I have STAGE IV rectal cancer!!

I returned home from the hospital, and two days later (two days after my chemo), I experienced horrific tenesmus (strong urge to push poop out, but nothing comes out). I was on the toilet for hours! Tenesmus continued sporadically over the three weeks until my 2nd chemo treatment, which was done as an outpatient visit on July 10.

Now, the oxaliplatin dose that I received in my first round was the same dose that I received in my second round. However, the first round gave me no side effects except diarrhea and cold sensitivity. The second round?? Omg, I'm sitting in the chair receiving chemo and suddenly, I've got double vision! I try to tell the nurse, but I'm lisping and slurring my speech! I'm a fine artist with superhuman dexterity, but on that day, I had no control of my hands! I struggled not to stumble when I walked! I felt like I couldn't breathe enough air into my lungs, and my throat felt like I couldn't swallow correctly. I was miserable. Fortunately, all of those symptoms subsided by the next day. My oncologist said that evidently I can't handle the maximum dose, and she's going to reduce it by 30% for the 3rd round. I hate that I won't be getting the full dose, but she said that my side effects were extreme.

Her plan is to give me three rounds of chemo, and then assess whether we can do radiation. She said that when chemo is done at the same time as radiation, the chemo is given at a (even more) reduced rate. Her concern is that such a low dose of chemo wouldn't tackle my metasteses sufficiently while the radiation focused on the 5cm tumor in my rectum.

Of course, we all hear miracle stories, and we all hope to be one of them. I hope that after three rounds of chemo, my doctor will do a scan and see that all my cancer is gone. I don't know what the survival rate is for stage 4 rectal adenocarcinoma, and I don't want to know. I do know that some people (a lot of people on this forum) have beaten it, and that gives me hope that I can, too. I have to, for my children. I'm so sad and scared. I keep hoping that this really is all just a bad dream.

Tina
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Intro, and please give your feedback

Postby Rock_Robster » Fri Jul 26, 2019 12:14 am

Hi TinaFish, firstly welcome to the forum. I’m really sorry to hear about your situation, but at least you’ve come to the right place.

There are a million things that could be said at this point, so I’ll just focus on one: have you had a surgical opinion on the liver yet? If not, I would prioritise getting an opinion directly from a hepatobiliary (liver) surgeon, that does a high volume of liver resections (preferably at a major cancer centre). Not a general surgeon, and not an oncologist reading your scans. Your odds of a long-term cure increase dramatically if a liver resection can be achieved, either now or via other treatment first.

The challenge now is going to be to balance the need to focus on the liver, with managing your symptoms from the rectal tumour. As your onc said, the light chemo dose during radiation may not be enough to control the liver mets. My suggestion would be to have a discussion with the oncologist about their overall goals from treatment (I know this is hard), and agree a sequence of steps to get to that point if all goes well. Ideally a surgeon would be involved in that discussion as well (either separately, or through a multidisciplinary team). It’s not a pleasant conversation to have, but the earlier you do it the sooner you can work out if you’re on the same page. And if you’re not confident in your oncologist’s plan, don’t hesitate for a moment to get a second opinion from a major cancer centre.

Good luck!

PS: don’t worry about the reduced oxaliplatin dose - the initial dosing is *not* an exact science, and adjusting based on side effects has actually been shown to be more effective in the long run.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Jul 26, 2019 9:20 am

Thank you for the incredible advice. I'm so happy that I joined this site.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Jul 26, 2019 10:34 am

https://www.nhs.uk/conditions/liver-cancer/treatment/

Wow, it says that 1 out of 30 people will die from liver resection operations??
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

weisssoccermom
Posts: 5959
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Intro, and please give your feedback

Postby weisssoccermom » Fri Jul 26, 2019 11:30 am

I am certainly no expert (or even mildly informative about this) but remember that what you read in the posted article is for people with
PRIMARY LIVER CANCER

That is NOT the same as someone having liver mets from another cancer. You need to remember that. You can't apply the statistics for someone with
primary liver cancer to someone who has colorectal cancer with liver mets. They aren't the same disease.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Jul 26, 2019 1:06 pm

weisssoccermom wrote:I am certainly no expert (or even mildly informative about this) but remember that what you read in the posted article is for people with
PRIMARY LIVER CANCER

That is NOT the same as someone having liver mets from another cancer. You need to remember that. You can't apply the statistics for someone with
primary liver cancer to someone who has colorectal cancer with liver mets. They aren't the same disease.


Right. Good point.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Intro, and please give your feedback

Postby Rock_Robster » Fri Jul 26, 2019 5:12 pm

Absolutely. Also the mortality rates for liver resection are dropping all the time, so getting current data is important. I believe it currently ranges 1-5%, and my surgeon said for an otherwise healthy patient like me (no cirrhosis) with a high-volume surgeon, it’s <1%.
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Intro, and please give your feedback

Postby Pyro70 » Fri Jul 26, 2019 11:19 pm

Tina,

You also need to test your MSI status and ideally you should get NGS gene sequencing of your tumor. Maybe they are waiting for surgery to do this, but they should already have biopsy samples. You may have some specific targets that open the door for more effective treatment.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Jul 26, 2019 11:57 pm

Pyro70 wrote:Tina,

You also need to test your MSI status and ideally you should get NGS gene sequencing of your tumor. Maybe they are waiting for surgery to do this, but they should already have biopsy samples. You may have some specific targets that open the door for more effective treatment.


Thank you for that advice! Is NGS gene sequencing the same thing as genomic testing? A nurse at Care Oncology told me to get genomic testing. Please tell me what you mean by "specific targets that open the door for more effective treatment." Are you referring to a change of, or to the addition of, a chemo medication?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

Pyro70
Posts: 155
Joined: Mon Jan 21, 2019 4:25 pm

Re: Intro, and please give your feedback

Postby Pyro70 » Sat Jul 27, 2019 7:31 am

TinaFish wrote:
Pyro70 wrote:Tina,

You also need to test your MSI status and ideally you should get NGS gene sequencing of your tumor. Maybe they are waiting for surgery to do this, but they should already have biopsy samples. You may have some specific targets that open the door for more effective treatment.


Thank you for that advice! Is NGS gene sequencing the same thing as genomic testing? A nurse at Care Oncology told me to get genomic testing. Please tell me what you mean by "specific targets that open the door for more effective treatment." Are you referring to a change of, or to the addition of, a chemo medication?


Yes genomic testing should be the same. Targeted therapies are typically instead of chemo. MSI is the big one, if you are MSI-high you qualify for immunotherapy monotherapy which can be game changer. There are some others like NTRK and ALK fusions that open the door to very effective therapy (but the gene fusions are very rare). Also Her2 now has targeted therapies and some mutations of KRAS.

Best of luck.
Dx Jan 2017 stage IVB w/ PC age 35
FOLFOX
SEP 17 HIPEC 1, anastamosis leak
XELODA
MAR 18 HIPEC 2
JUN 18, ileo reversal and 2nd anastamosis leak

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Sat Jul 27, 2019 8:57 pm

I am SO BLOATED today! I try so hard to pass gas or burp, but it just won't come out! I took simethicone and Pepto Bismol. I'm also having tenesmus today, so I took Bentyl. I wish my stomach could just feel normal. Is this bloating normal for someone with rectal cancer? Does anyone have a remedy?
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

stu
Posts: 1223
Joined: Sat Aug 17, 2013 5:46 pm

Re: Intro, and please give your feedback

Postby stu » Sun Jul 28, 2019 7:10 am

My mum took over the counter buscopan for stomach issues whilst on chemo . Check it out with your team but it helped her .

Just to encourage you 6 rounds of chemo chased my mum’s mets right off the scan . There is a subset of patients who are very chemo responsive . She is celebrating her tenth year since her diagnosis. She has had liver and lung involvement but at different times or so we think .
Hang in there .
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
Oct 2018. Another clear scan .

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Sun Jul 28, 2019 8:31 am

Thank you, Stu. Your words of encouragement were exactly what I needed this morning. I woke up freaked out about the idea of not making it through this. I'm too scared to look at statistics, so I don't know how likely it is that I can beat it. I hope that because I don't have any other health issues and I'm fairly young (45), I have a decent chance. I'm so scared today. I just want to be around for my children. I'm terrified of succumbing to this disease.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

TinaFish
Posts: 178
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Tue Jul 30, 2019 8:43 pm

I'm shamelessly bumping my thread. If people could please give me some words of encouragement, I could really use them. I'm having a particularly rough day. I want real, legit hope that I can beat my illness. I feel like my perception is skewed as far as how many people overcome it, because I see so many signatures on this site that show people doing well, but of course there are a lot of people who didn't do well, and who can't participate on this site for obvious reasons. Please, I know I'm new here and I haven't forged any friendships, but I'm so horribly scared.
F 45, single mother to son, 7 and daughter, 3
DX: stage 4 Rectal Cancer June 2019
Tumor Location: ? cm above anal verge
Tumor type: Adenocarcinoma
Tumor size: 5 cm
Tumor grade: ?
TNM code: ?
Stage : Stage IV-B
# of cancerous lymph nodes: ?
Mets: Numerous mets to liver, lungs
CEA: 22 in July; 11 as of August 15, 7 as of Sept 20
MSI status: MSS
KRAS/BRAF status: KRAS mutation
surgery: TBD
Ostomy surgery: TBD
Radiation therapy: TBD
Chemotherapy : CAPEOX+Avastin, 6 cycles, with CT scans after 3rd and 6th cycle.

jep
Posts: 196
Joined: Sun Jun 11, 2017 7:45 pm

Re: Intro, and please give your feedback

Postby jep » Wed Jul 31, 2019 9:55 am

Hi TinaFish . . . I'm sorry that you are struggling and feeling so scared right now. My husband has stage 4 colon cancer and has been fighting since May 2017. I think you have a lot of reasons to be hopeful . . . I'm not sure where you're being treated, but it sounds like your docs are doing the right thing at this point. Do you have someone who attends your appointments with you? My husband jokingly calls me "his secretary" because I keep track of everything for him, and I am also the one who shows up with his list of questions (and I take notes as well). The one thing that we've learned is that every cancer patient's journey (even stage 4 patients) is different and we try not to look at the stats, but to look specifically at his case. One poster suggested a focus on the liver mets . . . have you looked into a major cancer center (not sure where you live) . . . I can tell you a quick story that gave us so much hope in the beginning . . . My mom's boss (and we're talking many, many years ago) was diagnosed with stage 4 colon cancer that had spread to her liver . . . her case was extremely dire and she was told to get her things in order . . . that was until she went to MSK and was treated by Dr. Kemeny . . . my mom's former boss is alive and well today, and she is cancer free. I always keep her in my mind when we hit a rough patch.

I know you posted about colostomy/ileostomy . . . my husband is opting for a permanent colostomy after his surgery in late August . . . he's actually looking forward to it because his bathroom issues have been frustrating (to say the least) . . . he's a very active guy and is tired of running off to the bathroom rather than enjoying life. I can't help but wonder where we would be right now if he had his entire rectum removed (and a permanent bag) during his first surgery . . . can't think that way though . . . stay strong and stay positive and keep doing your research . . . sounds like you've learned so much already . . .

Sincerely,
jep
Wife of DH (47) Stage IV CC on 5/16/17
T Loc: recto-sigmoid
T type: Adenocarcinoma
T size: 7.4 cm
T grade: G3
TNM code: T3N2M1
Pos LNs: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps removed
PET 10/17/18: 3 pos LNs
Irinotecan + Vectobix (started in 11/18)
CEA: 1.7 (2/19)
Xeloda + radiation (5/19)
Surgery scheduled: 8/21/19 (aborted)
Phase 1 Trial (October 2019 - ?)
Bypass surgery 12/6/2019


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