Intro, and please give your feedback

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Rock_Robster
Posts: 184
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Intro, and please give your feedback

Postby Rock_Robster » Fri Aug 02, 2019 1:37 am

Hi TinaFish,

Thanks for this update - this is really helpful for understanding the situation. From here on is entirely unsolicited advice, so you’re welcome to tell me to shove it, politely or otherwise. I’m only posting this because it’s still under the “please give your feedback” topic. :)

I understand your oncologist does not currently consider the liver resectable - I would recommend having this reviewed directly ASAP by a high-volume hepatobiliary surgeon. I’ve seen a couple of cases in my short time so far where these two professionals disagree.

I’m not an oncologist (or even a doctor), but assuming your onc is correct about the liver, my question now would be - are we being aggressive enough in getting to resection? There is a lot of research showing how important the first line of treatment is when dealing with initially unresectable liver metastases. There is a ‘window’ wherein you need to get the maximum response safely possible, and it has been shown that some chemo combinations are more effective at this than others.

Do your know your RAS mutation status (from genomic testing)? If your tumour is “RAS wild” (i.e. no mutation) then it’s been shown thaf FOLFOX plus an EGFR inhibitor (such as Erbitux or Vectibix) has the best chance of converting to resectable. If you have a RAS mutation (ie KRAS or NRAS) and are in otherwise good health, then a combination called FOLFOXIRI (with or without Avastin) has the best conversion rate, although more challenging side effects (hence the good health part).

Another other aggressive option is the HAI pump for the liver, which I believe is available in CA at the City of Hope.

I know you are dealing with a lot at the moment between the symptoms, the treatment, and your family situation. I just want to make sure you don’t miss an opportunity for timely aggressiveness when tackling this.

Good luck,
Rob
Male 37 yr; Melbourne, Australia. BMI 24
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3 pN1a pM1a; 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
12/18 - DVT
3/19 - Liver resection (open); R0
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. R0; 1/27 LN positive
08/19 - FOLFOX x 2-4

Jacques
Posts: 449
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Fri Aug 02, 2019 4:55 am

TinaFish -

Thank you for creating a signature. You can update it anytime whenever you have new info to add. Just use the same link you used to create the initial signature.

I noticed that Rock_Robster mentioned City of Hope Hospital. It looks like this could be an excellent place to seek a second opinion on your liver resectability issue. They are located in Duarte, northeast of Los Angeles. It looks like they have some highly qualified hepatobiliary surgeons who deal with difficult colorectal liver metastases:

https://www.cityofhope.org/location/duarte
https://www.cityofhope.org/people/singh-gagandeep

I think it would be very important for you to get a second opinion, because not all surgeons have the same training and expertise. Some surgeons may find your liver resectable after they review your scans.

jep
Posts: 145
Joined: Sun Jun 11, 2017 7:45 pm

Re: Intro, and please give your feedback

Postby jep » Fri Aug 02, 2019 8:34 am

Great advice from both Rob and Jacques . . . my husband and I have learned so much from this forum, but a really important point is that the surgeon should be advising on surgical decisions (not just the oncologist). My husband's surgeon does work closely with his oncologist, but when it comes to the surgical questions we defer to his surgeon. I hope you can get a second opinion close by . . . maybe your oncologist is delivering this opinion after talking to your surgeon (?) . . .
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

TinaFish
Posts: 107
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Fri Aug 02, 2019 9:15 am

All great advice. Thank you so much. I hope no one ever feels like their advice isn't welcome by me. My life is at stake here - I am so lucky to have you kind people taking time out of your day to help me. I will definitely be seeing a hepatobiliary surgeon for his/her opinion.

Unfortunately, City of Hope does not accept my insurance. They accept Medi-Cal, but not the health plan that I have. I HATE HOW INSURANCE WORKS! I think I'll need to ask my oncologist for a referral to a liver surgeon. Even though she doesn't think I'm resectable, I'm sure she wouldn't mind me wanting to have a second opinion.
Last edited by TinaFish on Fri Aug 02, 2019 10:22 am, edited 1 time in total.
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
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: 184
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Intro, and please give your feedback

Postby Rock_Robster » Fri Aug 02, 2019 9:17 am

Anytime TinaFish; this group has helped me more times than I can count! Best of luck for the consults :)
Male 37 yr; Melbourne, Australia. BMI 24
10/2018 Dx 3.5 cm RC adenocarcinoma, 12cm from AV
Mod diff (G2), EMVI+, LVI+, PNI-
3 local LN; 4 liver mets, resectable
pT3 pN1a pM1a; 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
12/18 - DVT
3/19 - Liver resection (open); R0
4-5/19 - 25 x pelvic radiation w Xeloda; complete metabolic response (TRG 3)
07/19 - ULAR (robotic), temp ileo. R0; 1/27 LN positive
08/19 - FOLFOX x 2-4

jep
Posts: 145
Joined: Sun Jun 11, 2017 7:45 pm

Re: Intro, and please give your feedback

Postby jep » Fri Aug 02, 2019 9:37 am

TinaFish wrote:All great advice. Thank you so much. I hope no one ever feels like their advice isn't welcome by me. My life is at stake here - I am so lucky to have you kind people taking time out of your day to help me. I will definitely be seeing a hepatobiliary surgeon for his/her opinion.


I sent you a PM....you can access it in the top right hand corner
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

Jacques
Posts: 449
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Fri Aug 02, 2019 10:26 pm

Are there any Stage IV patients/caregivers here who can explain what is involved in getting a second opinion on unresectable liver mets in the U.S.?

What kind of documents/paperwork are required in order to set up a second-opinion consultation? What does it cost? Can a patient request the consultation to be with with a specific doctor, or are you just assigned whatever doctor the hospital wants to assign? It's not clear to me how the system works in the U.S.

It is my impression that one of the required documents for a Second Opinion is an official "First Opinion" , i.e, a written document signed by a doctor saying that, in his/her opinion, the patient's liver is or is not resectable.

TinaFish
Posts: 107
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Sat Aug 03, 2019 10:12 am

Jacques wrote:Are there any Stage IV patients/caregivers here who can explain what is involved in getting a second opinion on unresectable liver mets in the U.S.?

What kind of documents/paperwork are required in order to set up a second-opinion consultation? What does it cost? Can a patient request the consultation to be with with a specific doctor, or are you just assigned whatever doctor the hospital wants to assign? It's not clear to me how the system works in the U.S.

It is my impression that one of the required documents for a Second Opinion is an official "First Opinion" , i.e, a written document signed by a doctor saying that, in his/her opinion, the patient's liver is or is not resectable.


Good question! Anyone?
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
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.

MetastaticEquilibria
Posts: 21
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Intro, and please give your feedback

Postby MetastaticEquilibria » Sat Aug 03, 2019 10:50 am

Hi Jacques,

Here is something I wrote on another thread, if it is relevant:

MetastaticEquilibria wrote:
Siti wrote:P/S: we live in Amsterdam and will be getting treated at the NKI. We were considering getting treated at MSK or MD Anderson if things don’t go well here but we were told that the medical bill would be in the millions of dollars! Is that true?


You can get rough prices from them — look for their “International Patient” inquiry portals. I have done this (I am in Japan), and my recollection is that most procedures were in the high-tens to low-hundreds of thousands of dollars for a cash-basis patient. One procedure means something like surgery or a full course of radiation or chemo. They can review your case and give an estimate up front, which you pay before they begin treatment.

Generally, I concluded it doesn’t make sense to go to them (if you can even afford them) unless you want access to something they specialize in that you cannot get, or would have a hard time getting done, in your country. For example, HAI pump at MSK, or a wide variety of clinical trials at MDA.

Add: you can also request a remote second opinion from them for a-couple-to-a-few thousand dollars. You’ll need to get all your medical records, scans, etc. to them, and everything needs to be translated into English. This might at least put your mind at ease if they concur with your current plan of treatment.


Though if you are asking for TinaFish instead of for you (if your sig is up to date), this may be irrelevant as she lives in the US. But TinaFish can still contact MSK through their regular portal and they will say what is needed. Probably the same records, but hopefully her insurance would cover?
Last edited by MetastaticEquilibria on Sat Aug 03, 2019 11:25 am, edited 2 times in total.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 Gy)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 Gy)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

NHMike
Posts: 2078
Joined: Fri Jul 21, 2017 3:43 am

Re: Intro, and please give your feedback

Postby NHMike » Sat Aug 03, 2019 11:07 am

What I've heard is that the hope is that chemo will shrink tumors to the point that they can be resectable. One of my coworkers wife has liver cancer and is being treated at Mass General. They tried chemo but it didn't work so she's in a clinical trial for something else. If that does work, then liver resection is back on the table. In the meantime they've been doing some traveling in case things don't work out.

I have seen other cases here where chemo has resulted in making liver resection possible but I can't think of the usernames off the top of my head.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

martd
Posts: 106
Joined: Tue Nov 21, 2017 3:48 pm
Location: Phoenix, Az

Re: Intro, and please give your feedback

Postby martd » Sat Aug 03, 2019 11:10 am

All it takes is a phone call. My personal experience, after my first appointment with an oncologist and colon surgeon I called Mayo Clinic. They scheduled 2 appointments the following day, they retrieved all my medical records and pathology that same day. In the morning had my first CT scan, 2 appointments later in the afternoon, I was in surgery the following morning having my port implanted. The only thing I did was a phone call. If you know where you want a second opinion just call them.
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

Jacques
Posts: 449
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Sat Aug 03, 2019 1:53 pm

MetastaticEquilibria wrote:...Though if you are asking for TinaFish instead of for you (if your sig is up to date), this may be irrelevant ...


Yes, I was asking on behalf of Tina, not myself, and this was in the hope of eliciting some first-hand experiences that patients have had in dealing with second opinions in the U.S.

In the past I did two different second opinions with U.S. hospitals while I was living abroad, and I learned a few things in the process.

One point has to do with Electronic Health Systems (EHS) that hospitals may or may not have implemented. If a patient is being treated in a hospital that has an EHS electronic medical record system installed, and if all the patient's test results and records come from that particular hospital, then it is relatively easy for the hospital to generate a digital archive of the patient's records and send the archive to another hospital that has a compatible EHS medical record system that can read and import the records. (All major cancer centers have these kinds of record systems, but not the small, rural hospitals)

The problem comes when a patient is being treated at a small local hospital or clinic that does not have an EHS-compatible, digital, record-keeping system. In this case it can be a major problem to assemble all of the records that the Second Opinion doctor needs to see and to convert them to a compatible format.

Some small hospitals only have what is called an Electronic Medical Record (EMS) system, which is basically just a digital version of the patient's chart. The small EMS systems are designed only for in-house use. They are not designed to be compatible with the more comprehensive and flexible EHS systems that the major hospitals use. The problem is explained in greater detail here:
https://www.practicefusion.com/blog/ehr-vs-emr/

So, this is a particularly difficult problem when a patient from a small hospital needs to get a second opinion from an expert doctor in a major cancer center, and the major cancer center insists on having a complete patient file before they will schedule a second-opinion consultation. This is what happened to me.

TinaFish
Posts: 107
Joined: Sun Jul 21, 2019 10:11 am

Re: Intro, and please give your feedback

Postby TinaFish » Sat Aug 03, 2019 6:58 pm

I think a big problem for me is that I have Medi-Cal. Many doctors refuse to accept it because they don't get paid very much by Medi-Cal. Therefore, the doctors who do accept Medi-Cal are swarmed with herds of patients. Individual attention is difficult to get (unless you're someone like me, who has a "big" personality and doesn't put up with bull****), and I can't just call the Mayo Clinic and see a liver surgeon. At the very least, even if the Mayo Clinic does accept Medi-Cal (I have no idea), I would still need a referral either from my primary care physician, or from my oncologist. Yeah, I hate how insurance companies operate. I just wonder if they were completely eliminated and if the state dealt directly with the doctors, how much better it would be. All the profits that the insurance companies make could be used to pay the doctors better, and then patients would have a wider pool of doctors to see.
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
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.

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Intro, and please give your feedback

Postby boxhill » Sun Aug 04, 2019 2:03 pm

My only relevant experience is that my oncologist sent me to Dana Farber for a second opinion before starting chemo. His office arranged it, and presumably my insurance co at the time agreed. DF also redid the tumor pathology and did extensive genetic testing, of which they apparently have their own standard/method.

Recently, when the subject of whether to remove a small liver mass was on the table, my oncologist took it to the "tumor board," which incluldes doctors from all of the disciplines: surgeons, oncologists, various types of radiologists. I don't know what I would have to do if I wanted a second opinion beyond that. In this case, I am willing to accept their recommendation.

I have not had a situation where I felt I had to push for surgery beyond what my onc thought was appropriate, or push for another surgical opinion. I think that you should be able to get your oncologist to recommend it, but whether you insurance will agree to cover it--even IF the provider accepts your plan--is another matter. And be aware that it may involve a so-called peer-to-peer review after a rejection. Even if your doc is willing and able to take the time to sit on the phone for 20+ minutes, mostly on hold, and make a strong case, the so-called doc on the other end may well simply reread the verbiage in the rejection over the phone. Twice. (As you might surmise, this is what happened to us recently. This is typical of situations in which the insurer has retained one of those companies who pre-screen treatment requests for them, the goal of which is to reject as many as possible.)

BTW, is it too much to hope for that your late husband had some friends or family who might help you?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Jacques
Posts: 449
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Intro, and please give your feedback

Postby Jacques » Sun Aug 04, 2019 7:44 pm

Hi Tina -

As someone mentioned earlier, it would help if you could upgrade your signature so that it includes details of all of the currently available items that define your risk profile. Right now your signature is very basic and does not give a complete picture of what is currently known about your diagnosis and your treatment plan.

Some items that should be in your signature right now are highlighted in bold below. Items that are missing or incomplete are indicated in red.

    Age & Sex
    DX: Rectal Cancer (RC) or Colon Cancer (CC)
    Tumor Location: If RC, then upper, middle or lower rectum, and distance from anal verge. If CC, then ascending colon, hepatic flexure, transverse colon, splenic flexure, descending colon, sigmoid colon, or recto-sigmoid junction, etc.
    Tumor type: Adenocarcinoma; villous adenoma; signet ring-cell carcinoma, etc.
    Tumor size: (in mm or cm)
    Tumor grade:
      G1: Well differentiated (low grade)
      G2: Moderately differentiated (intermediate grade)
      G3: Poorly differentiated (high grade)
      G4: Undifferentiated (high grade)
    TNM code: e,g, T3N0M0, etc
    Stage : Stage I, Stage II, Stage III or Stage IV (with subscript, if applicable)
    Number of cancerous lymph nodes:
    Mets: Location and number of metastases, (e.g., number of mets to liver, mets to lungs, etc)
    Baseline CEA value:
    Lymphovascular invasion (LVI) (if known): present vs. absent
    Perineural invasion (PNI) (if known): present vs. absent
    Surgical margins: clear or involved
    MSI status e.g., MSS
    BMI
    Lynch status(if known)
    KRAS/BRAF status
    Primary surgery type:
      LAR, ULAR, TME, APR, Laparascopic vs. open resection, polypectomy, proctosigmoidectory, colectomy, hemi-colectomy, sigmoid-colectomy, etc...
    Ostomy surgery: Ileostomy, or colostomy, or no ileo surgery
    Radiation therapy (if any): Chemo/rad
    Chemotherapy : e.g., XELOX, CAPEOX, FOLFOX, etc.


(Note: Items that are not highlighted in bold above can be added later on, as they become available.)

Also: when you see your oncologist this week, could you ask her:

1. Who made the determination that your liver mets are not resectable? (Write down the name so that you can look up their qualifications later on when you get home.)

2. What reasons were given for the "not resectable" decision?

3. What is the official name of the chemo regimen that you are on right now? How many weeks in each cycle?

4. When are you going to have a scan to determine the effect of the pre-surgery chemo?

5. When will you know what the next step is (more chemo? some chemo/radiation? surgery?)


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