Questions, questions, too many questions.

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

Questions, questions, too many questions.

Postby Mohrfamily » Fri Jun 21, 2019 4:47 am

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!
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.

Rock_Robster
Posts: 107
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Questions, questions, too many questions.

Postby Rock_Robster » Fri Jun 21, 2019 5:36 am

Hi Mohrfamily, I’m not an expert on this part, but here’s my two cents.

Have you had a consultation directly with an aggressive liver surgeon? It might be time for a frank discussion with them (and your oncologist) about goals. It sounds like your goal is to get your husband to liver surgery (which makes sense). I would be asking a surgeon specifically what is required to get to this point, in terms of response to treatment. Then you can see how credible that is outcome looks based on the objective response to FOLFOX to date.

If it looks like this isn’t likely on the current trajectory, then it might be worth discussing with your oncologist (or getting a second opinion) on more aggressive liver-targeted treatment. This could be through triplet therapy (FOLFOXIRI), targeted therapy (EGFR/VGFR inhibitors), or something liver-focussed such as HAI, Y-90, partial resections, and/or portal vein embolisation. Ideally the oncologist and the surgeon would then end up on the same page about the goal, and the plan to get there.

Sorry if I’m suggesting things you already know or have tried.

Best of luck.
Male 37 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 12cm from AV. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
MSS, MMR-proficient, mutated in NRAS (G13R).
CEA: Oct-18 = 12; Nov-18 = 14, Mar-19 = 2.4
11/18 - 6 cycles neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, R0
4-5/19 - Long-course pelvic radiation w/ Xeloda; complete metabolic response
07/19 - Planned ULAR w temp ileo

martd
Posts: 102
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Questions, questions, too many questions.

Postby martd » Fri Jun 21, 2019 12:22 pm

I agree with robster, With my situation had it been up to my oncologist I would never of had surgery, At my second scan he told me " I know the surgeon told you surgery was possible but it's not going to happen, We'll put you on maintenance chemo after folfox". It was a different story with my surgeon, at my next appt. surgery was scheduled. My liver surgeon told me "you'd be surprised how many people never get surgery when it is possible". This all happened at Mayo clinic. The oncologist telling me I wouldn't have surgery was from Mayo also. Be aggressive with searching for second opinions, and if you haven't talked with a surgeon find one and make an appt.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

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

Re: Questions, questions, too many questions.

Postby ginabeewell » Fri Jun 21, 2019 12:27 pm

I met with THREE oncologists, none of whom were willing to even talk to me about surgery. The fourth one - the one with whom I ultimately ended up working - was the only one willing to even engage in the conversation.

She put me on FOLFOX + Vectibix, and that aggressive combo did the trick on some HUGE mets. I'll have my first resection in about four weeks and a second in October.

So I think there is some truth to the fact that you may need to get much more aggressive in stating that surgery is your goal and asking what will it take for you to get there? And certainly meeting with a surgeon if you haven't already done so.
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

boxhill
Posts: 265
Joined: Fri Apr 06, 2018 11:40 am

Re: Questions, questions, too many questions.

Postby boxhill » Fri Jun 21, 2019 1:04 pm

I think you've gotten excellent advice. There does seem to be somewhat of a divide amongst oncologists on this issue. Personally, I'd be looking for someone who was willing to work towards becoming operative.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemicolectomy
11 of 25 nodes,5 of 5 mesentery nodes
5mm liver met removed
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LNs shrunk to normal, Liver node stable
6/28/19 Keytruda paused, predisone for joint pain

User avatar
juliej
Posts: 2995
Joined: Thu Aug 05, 2010 12:59 pm

Re: Questions, questions, too many questions.

Postby juliej » Fri Jun 21, 2019 5:05 pm

boxhill wrote:I think you've gotten excellent advice. There does seem to be somewhat of a divide amongst oncologists on this issue. Personally, I'd be looking for someone who was willing to work towards becoming operative.

Mohrfamily: I agree with boxhill that there's a divide among oncologists on aggressive treatment for Stage 4 patients. Many are more than willing to let things run their course, meaning chemo eventually quits working and you're sent to hospice. I was one of those who were told there was less than zero possibility of surgery. When I continually brought it up to my oncologist, he advised counseling so I could "accept" my fate.

But, one visit to Dr. Kemeny at MSKCC and the whole situation changed! There they said I was a good candidate for surgery, despite what my local oncologist had been stating for 14 months. When I had my liver resection, my surgeon said I was "exceptional." "But," he added, "there are many other Stage 4 patients who are just as exceptional who aren't given a chance for surgery and that's a shame." It's more than a shame. It's a disgrace in the oncology world.

I would ask if the goal is for him to become operative. And if it isn't, I would get a second opinion somewhere else. He hasn't had any new growth since starting treatment, right? And a 50% reduction in the size of his tumors? In my decidedly amateur opinion, someone should be talking to him about the possibility of a liver resection or an HAI pump or both.

Don't be afraid to get another opinion from an oncologist at a NCI-designated cancer center. I know your DH isn't fond of talking to doctors, but he might just have one chance at this. Be strong with your current oncologist - ask hard questions and get straight answers so you know how to proceed.

Sending good energy your way!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 3/18/2019, CEA<1

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

Re: Questions, questions, too many questions.

Postby Mohrfamily » Sat Jun 22, 2019 2:22 pm

Thanks all.

I decided after his next scans in the near future I'm going to be there for the review and start with we want surgery lets talk about it be it radiation surgery options or getting a consult with a liver surgeon connected to our hospital's cancer center. What they want to get there if he's still not there yet.

Any other questions I should ask please add them to the thread!
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 » Sat Jun 22, 2019 6:46 pm

Mohrfamily, forgive me if I'm not remembering your story correctly, but aren't you patients at MSK with Dr. Kemeny? Or you've consulted with them already, at least?

Rock_Robster
Posts: 107
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Questions, questions, too many questions.

Postby Rock_Robster » Sun Jun 23, 2019 7:38 am

martd wrote:My liver surgeon told me "you'd be surprised how many people never get surgery when it is possible".

Unfortunately I find this both unsurprising and borderline criminal. If the one thing I can achieve throughout this process is that every newly-diagnosed patient with liver mets gets an early, personal consultation with a high-volume hepatobiliary surgeon (to the extent this is possible), then I’ll be satisfied.
Male 37 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 12cm from AV. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
MSS, MMR-proficient, mutated in NRAS (G13R).
CEA: Oct-18 = 12; Nov-18 = 14, Mar-19 = 2.4
11/18 - 6 cycles neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, R0
4-5/19 - Long-course pelvic radiation w/ Xeloda; complete metabolic response
07/19 - Planned ULAR w temp ileo

martd
Posts: 102
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Questions, questions, too many questions.

Postby martd » Sun Jun 23, 2019 8:12 pm

Rock_Robster wrote:
martd wrote:My liver surgeon told me "you'd be surprised how many people never get surgery when it is possible".

Unfortunately I find this both unsurprising and borderline criminal. If the one thing I can achieve throughout this process is that every newly-diagnosed patient with liver mets gets an early, personal consultation with a high-volume hepatobiliary surgeon (to the extent this is possible), then I’ll be satisfied.



It's a shame that this goes on. I can understand the oncologist telling me we just don't know at this point so we are going to keep trying, but to tell me surgery is not going happen is a reckless thing to say. I could easily have given up at that point. I like your idea of a mandatory consultation with a surgeon as part of standard of care. This might be a good subject for the next Call on Congress.
49 y/o male dx 11/2017 crc
Stage 4 with 17 liver Mets, cea 490
RAS, BRAF WT Tp53 LOF
12 rounds folfox , avastin
5/18 cea 2.8 liver resection and pve
7/18 part 2 liver resection, remove right side of liver
Surgical site mrsa infection, wound vac
8/18 cea .9 cCR, rectal tumor is gone
Rectal surgery postponed, watch and wait
10/18 clear scan CEA .7
01/19 clear scan CEA .9
04/19 clear scan CEA .9
07/19 clear scan CEA 1.0

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

Re: Questions, questions, too many questions.

Postby Mohrfamily » Mon Jun 24, 2019 4:44 am

FightCRC wrote:Mohrfamily, forgive me if I'm not remembering your story correctly, but aren't you patients at MSK with Dr. Kemeny? Or you've consulted with them already, at least?


Yes we did consult with them back in January. DH did more research on the pump and is just not comfortable with the actual pump part. Its again not to say that he wouldn't do it if it became necessary but I think its nerves...
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 » Mon Jun 24, 2019 12:20 pm

Mohrfamily wrote:
FightCRC wrote:Mohrfamily, forgive me if I'm not remembering your story correctly, but aren't you patients at MSK with Dr. Kemeny? Or you've consulted with them already, at least?


Yes we did consult with them back in January. DH did more research on the pump and is just not comfortable with the actual pump part. Its again not to say that he wouldn't do it if it became necessary but I think its nerves...


The nerves are warranted. Besides the inconvenience/commitment of the pump, there are also considerable risks to the treatment, as well as potential ramifications on future options.

But should also be understood that there is a window for HAI to be most effective. The less prior treatment, the better. Also, cannot assume that it will always be an option. In the various Facebook CRC groups, there are too many sad examples of patients who have hesitated for too long (for many reasons, including nerves), and by the time they were mentally ready to proceed with HAI, the option was no longer available to them. By they time they decided "it became necessary", it was too late.

Your oncologist's plan to "keep it at bay" and "keep things stable" is very telling. It's chemo-for-life, without explicitly saying so. And we all know that chemo will only work for so long. You absolutely need to be seen by a liver surgeon (or two, or three) to see what they say. If you are told "unresectable", then HAI is a no-brainer, IMO. Because you have little to lose at that point. I would guess that MSK's plan back in January was to get to resection with the pump. If your husband decided against the pump, then there should have been a backup plan to get to resection. That doesn't appear to have happened. So please get back on the resection path ASAP, one way or another. All the best to you and your husband.

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

Re: Questions, questions, too many questions.

Postby Mohrfamily » Mon Jun 24, 2019 12:29 pm

Thanks FightCRC

I've already looked at 2 other surgeons and my job will pay for us to go to mayo clinic in minnesota if they say they can do more.
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 » Mon Jun 24, 2019 1:42 pm

I just want to say that our oncologist has been very good to us her overall attitude and Outlook is a lot more positive now than it was a year ago but at the same time my husband and I are getting tired of the same old song and dance routine but given what we've gone through for the past year we finally got to a point where the oncologist was like yes let's get you to a radiologist let's start talking about Radiology so we have moved forward slightly on it just doesn't seem like enough of a force behind it and I've already researched and found two different liver surgeons in Ohio one of which is in Toledo the other down towards Columbus so if at our next scan follow-up appointment we don't hear something that's a little bit more proactive I'm definitely going to suggest that maybe they get in touch with somebody or if we should just go ahead and get in touch with them for a consult ourselves

One of the nicer things about my job is that this year they actually started a program where if we send in the most up-to-date information and they decide that there's more that can be done they will actually pay for us to visit the Mayo Clinic which the closest one to us would be admitted soda but that would be something like you know they're going to review all the information on paper and then decide if there would be more that they can do then they would have us come out but if there's not then they would make us go through all that just to be told the same thing is here
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.

Rock_Robster
Posts: 107
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Questions, questions, too many questions.

Postby Rock_Robster » Mon Jun 24, 2019 10:00 pm

martd wrote:
Rock_Robster wrote:
martd wrote:My liver surgeon told me "you'd be surprised how many people never get surgery when it is possible".

Unfortunately I find this both unsurprising and borderline criminal. If the one thing I can achieve throughout this process is that every newly-diagnosed patient with liver mets gets an early, personal consultation with a high-volume hepatobiliary surgeon (to the extent this is possible), then I’ll be satisfied.


I like your idea of a mandatory consultation with a surgeon as part of standard of care. This might be a good subject for the next Call on Congress.

I’m up for this! I don’t want to divert from Mohrfamily’s topic so I’ll take up elsewhere. Any suggestions on who to work with on this are welcome. Thanks
Male 37 years; Melbourne, Australia
10/2018 Dx: 3.5 cm rectal adenocarcinoma, 12cm from AV. Well/mod diff (G1-2), T3bN1bM1a.
3 enlarged local lymph nodes and 4 liver lesions.
MSS, MMR-proficient, mutated in NRAS (G13R).
CEA: Oct-18 = 12; Nov-18 = 14, Mar-19 = 2.4
11/18 - 6 cycles neoadjuvant FOLFOX
12/18 - DVT, started clexane
3/19 - Liver resection, R0
4-5/19 - Long-course pelvic radiation w/ Xeloda; complete metabolic response
07/19 - Planned ULAR w temp ileo


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