Questions, questions, too many questions.

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Pyro
Posts: 259
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Questions, questions, too many questions.

Postby Pyro » Tue Jun 25, 2019 5:58 am

Mohrfamily wrote:Ok so maybe I quoted Jim Carey aka The Riddler from a cheesier version of Batman.

Fact remains: how long have some of you waited for surgery? DH hates talking to the oncologist because she continues to say we are just "keeping cancer at bay" "keeping things stable" her outlook us positive but that's it. I try and remind my husband he's gotten better with his numbers and every scan thus far has shown improvement and maybe her meeting this time is less spectacular considering we don't usually see her till after a scan is done and he's calling today to schedule a new PET at the request of the radiologist.

I remain positive and I don't dwell on negative thoughts but it's harder for him to block things out I understand. But it drives him to fight that much harder. He worries he's going to be in a constant " holding" pattern. After all he's had zero surgical procedures done not counting his port placement.

I know I had more things to ask than that but its early and tone to start the daily grind at least its Friday!


I really hate to say this but, maybe they are trying to tell you something without saying it.
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

FightCRC
Posts: 34
Joined: Fri May 25, 2018 10:39 pm

Re: Questions, questions, too many questions.

Postby FightCRC » Tue Jun 25, 2019 12:07 pm

Pyro wrote:
I really hate to say this but, maybe they are trying to tell you something without saying it.


As upsetting as it would be to hear it, one might also consider it a favor. Because then you would know where you stood with the onc. You would know they were treating you with that particular outlook.

A lot of patients don't want to hear the prognosis from the doctor. I get it. Why be even more depressed? But I did ask our first onc her prognosis. It wasn't good, she didn't think we'd have much time left. Upon more research, I learned that a benchmark for cancer survivorship is 5 years. So at the next appointment, I asked our onc if, in her entire career, she'd ever had a Stage IV patient make it to 5 years. She looked dumbfounded, and either couldn't or wouldn't answer me. Either way, I knew we had to get the hell out and find help elsewhere.

So knowing where we stood with her was a huge motivation in getting other opinions, and landing at a center with a doctor who has truly given us some hope.

Find a doctor who will give you hope, who won't have given up before the fight has even begun. Good luck, Mohrfamily and anyone else new here.
Last edited by FightCRC on Tue Jun 25, 2019 5:20 pm, edited 1 time in total.

Mohrfamily
Posts: 114
Joined: Tue May 22, 2018 4:04 pm

Re: Questions, questions, too many questions.

Postby Mohrfamily » Tue Jun 25, 2019 12:26 pm

Pyro you've given me hope and insight in the past but that response have me a pit of despair I hadn't felt for awhile.

Fight, you helped soften that response and in grateful.

There is a fight brewing about more opinions and the bold faced question next time I see the oncologist and/or radiologist. My hubby is young and full of fight and I just don't believe that he can't beat this.
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

FightCRC
Posts: 34
Joined: Fri May 25, 2018 10:39 pm

Re: Questions, questions, too many questions.

Postby FightCRC » Tue Jun 25, 2019 12:49 pm

Mohrfamily, I'll add that the doctor/center that has given us hope is Dr. Kemeny/MSKCC. We got turned onto Dr. Kemeny and MSK from reading all the stories on the various message boards. Our eternal gratitude to posters like juliej, mariane, and so many others for helping to spread the word.

We are from CA and made the trek. It's been worth it.

I will also add that Dr. Kemeny and MSK aren't the end-all, be-all for treatment. But if you've already been there for a consult, and had been accepted for treatment...that should be viewed as nothing less than a critical lifeline. Especially if your current team isn't as aggressive as you'd like them to be.

I suspect future you would tell present you to do all you could to help your husband get over his nerves, and go someplace that will treat him with curative intent. I wish you guys the best.

AmyG
Posts: 185
Joined: Tue Dec 25, 2018 8:08 pm

Re: Questions, questions, too many questions.

Postby AmyG » Tue Jun 25, 2019 1:31 pm

Curative intent is how my team is treating me. I responding fabulously.

If your team isn't shooting for that, I'd look elsewhere pronto. I mean, maybe your current oncologist just can't see how your husband can beat this. That doesn't mean another doctor would see the same prognosis.

Did you say you could go to mayo or the Cleveland clinic? I'd be having a sit down come to jesus with your husband. He has too much to live for to not be aggressive with his treatment.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection next step!

User avatar
ginabeewell
Posts: 239
Joined: Wed Oct 24, 2018 10:30 am

Re: Questions, questions, too many questions.

Postby ginabeewell » Tue Jun 25, 2019 2:35 pm

FWIW, I did a consult at Cleveland Clinic and the oncologist refused to talk to me about surgery or anything even a little out of the bounds of normal. He told me his goal would be to keep me alive for 2 years and hope for a medical breakthrough in the meantime.

I know now it’s because he thought I had a slim chance of becoming operable.

I found one doctor at Northwestern who was willing to approach with curative intent and had the same experience at MSK. I don’t know that you are going to find someone more aggressive than MSK at Mayo.

I have the HAI pump now but in retrospect wish I had done it sooner. I suspect I would have had a better response.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

Pyro
Posts: 259
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Questions, questions, too many questions.

Postby Pyro » Tue Jun 25, 2019 5:14 pm

Mohrfamily wrote:Pyro you've given me hope and insight in the past but that response have me a pit of despair I hadn't felt for awhile.


I sincerely apologize if what I said hurt you, that was not my intent. Most people, especially doctors, beat around the bush rather than say something concrete, it’s just something I look for and forward as a possibility. I could be 100% wrong, as I am not a doctor but I’ve played one on TV
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

lovelife789
Posts: 139
Joined: Thu Aug 24, 2017 5:28 am

Re: Questions, questions, too many questions.

Postby lovelife789 » Wed Jun 26, 2019 3:57 am

Mohrfamily,

I don't feel that your doctor has that curative intent at heart. I may be wrong. Just my gut feeling.

I had 5 tumors in my liver at diagnosis, the largest one was 8cm. Almost all segments were involved. The doctors got me to NED in 6 months and told me at every consultation in that 6 months that curative intent was what they were aiming. They told me to have hope.

I was told last month that I'm no longer curable, but I told the doctors to never repeat that. Doctors can tell me what the probabilities are based on numbers and statistics but I'm so much more than a number! They don't have a crystal ball and they are not God. I told them I'm only interested in the positive aspects.

So after I dropped that mental burden, I felt so much lighter and physically better.

My 2 cents are ... Find a doctor who is willing to work aggressively to beat your disease and positively WITH you. Work to reframe negative thoughts.

May the force be with you!!!
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild, G2=Mod. differentiated
3/17- 6/17 - 6 rounds of FOLFOX + Erbitux - CEA 2.5
7/17 - 1st Liver resect/Colon/Gall, all clear margin
8/17 - 2nd Liver resec
9-12/17' - completed 13 rounds of FOLFOX - CEA 1.0
1/18 - 6/30 - NED
6/30 - PET SCAN showed a lung nodule that grew from 5mm to 8mm - CEA 1.0
8/30 - VATs
8/30 - 4/30 - NED
5/28 - uptake seen in 1 x PALN, 1x common iliac, cloudy in Liver
FOLFIRI + Avastin

Mohrfamily
Posts: 114
Joined: Tue May 22, 2018 4:04 pm

Re: Questions, questions, too many questions.

Postby Mohrfamily » Wed Jun 26, 2019 4:48 am

Thank you everyone.

I did talk to DH yesterday and I asked him if his thoughts or views had shifted about where where we are at and who we are dealing with. He said he still feels confident that its going in the right direction.

They labeled him palliative last year but his NP said the goal is to cure I do feel like they are trying to get us there my feeling is it might be time to up the ante. We haven't talked to a surgeon since we left Cleveland Clinic in December 2018 but the surgeon we spoke to affiliated not since August 2018 so I think its time to talk to another one. After really getting DH to talk about his feelings (not mine) he was only momentarily discouraged, he kept saying my thoughts and my feelings and I told him my opinion aside I want your take because that's the one that matters first.

So a conversation is going to come up about upping the aggressive just need to see his next scans first.
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Mohrfamily
Posts: 114
Joined: Tue May 22, 2018 4:04 pm

Re: Questions, questions, too many questions.

Postby Mohrfamily » Wed Jul 10, 2019 4:45 am

So, medical marijuana healer or hoax?

DH has been using an oil burner and that's been a huge help for the random pains that come and go as well as boost his appetite and enhance better sleep.

Recently got his medical marijuana card. Its different from the oil, hits differently still trying to navigate everything from how much to pack in to which mouth piece he should use. He was excited to talk to a woman at the dispensary who claims to have beaten cancer using only CBD mind you I wasn't there so I don't know staging or type and he couldn't remember.

Hes on 2 strands that will apparently work together to attack the unwanted (understatement) cells in his liver. They also gave him an oil dropper for before bed and he's been getting the best sleep he's had in a long time. His side effects as told by the dispensary: lower anxiety, higher appetite, lower pain levels, higher activity.

I just hope its not a bunch of malarchy blowing smoke up his behind. Just had a new PET scan yesterday praying for continued good results!
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.


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