Second opinions? Stomach cancer cells?

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Lovenothate
Posts: 38
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

Second opinions? Stomach cancer cells?

Postby Lovenothate » Wed Jul 26, 2017 1:54 pm

So today my mom got her scan results after a month off avastin and only xeloda and the onc has said the lung spots have stayed the same but he said that he has cancer cells in her stomach? He didn't elaborate or anything.

She doesn't have any actual tumors but with all of this he wants to start giving her FOLFIRI. Does this sound right? As of now he has been okay with following treatment plans but I'm leaving back to college in a month and I just want some kind of assurance I guess.

Are second opinions expensive or is the process complicated? I just want the best for my mom :cry: please give me some help or words...
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Second opinions? Stomach cancer cells?

Postby NHMike » Wed Jul 26, 2017 2:44 pm

I'm sorry that you have to deal with these problems as taking care of parents can be quite taxing.

I went for second opinions after talking to the local oncologist and radiologist. It involved traveling to the nearby large city and arranging appointments at a National Cancer Center. I had to cover copays of about $35 but the rest, as far as I can tell, was covered by my insurance. So whether or not it's expensive or not is an insurance matter. It took a fair amount of effort to arrange the appointments because their intake process is set up to deal with a lot of volume and it can take a bit of time for someone to get back to you and you have to be near your phone. The hospitals where you might want a second opinion might be easy to work with or difficult.

I am not familiar with FOLFIRI but I assume that it's 5 FU with one or more other things so I'll just follow to see what others see.
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

Lovenothate
Posts: 38
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

Re: Second opinions? Stomach cancer cells?

Postby Lovenothate » Wed Jul 26, 2017 8:24 pm

Thanks for the reply NHMike!
The nearest thing in Las Vegas I would assume is the Comprehensive Cancer Center so I'll be looking into that. Not much great help in the west that I've heard of but I will be on the search. I'm assuming records are shared from oncologist to oncologist?

Thank you for your time
Emily
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Second opinions? Stomach cancer cells?

Postby NHMike » Wed Jul 26, 2017 8:52 pm

Lovenothate wrote:Thanks for the reply NHMike!
The nearest thing in Las Vegas I would assume is the Comprehensive Cancer Center so I'll be looking into that. Not much great help in the west that I've heard of but I will be on the search. I'm assuming records are shared from oncologist to oncologist?

Thank you for your time
Emily


I was thinking more of NCI Cancer Centers and you can see these on a map at https://www.cancer.gov/research/nci-rol ... nters/find

I didn't see any in Las Vegas though there are a bunch in LA and SF. I don't know much about the Comprehensive Cancer Center in Las Vegas other than their name is the same as the NCI designation but they don't seem to carry the designation.

Here's a list of the top 20 US News and World Report Cancer Hospitals: http://www.medscape.com/viewarticle/866909

The one that I picked for a second opinion was Dana Farber Cancer Institute which is about an hour away from me and they are ranked #4. The local hospital that I am using for treatment is an NCI Cancer Center and it's the only one in my state. I'd say that the hospitals that are highly ranked for cancer are more streamlined to handle cancer in volume and I found the doctors to be sharper and better up-to-date on clinical trials and nuances in treatment.

As far as communications go: I keep a list of all of my contacts on my phone and pass on the list of people to each doctor that I run into so that they know who to contact if they need something. Doctors can communicate if they are on the same or compatible Electronic Medical Records systems but it seems that many places are just getting started with this. Sometimes I had to bring reports from one doctor to another, sometimes I had to bring DVDs with imaging from one doctor or hospital to another and sometimes the other doctors had all the information electronically. The thing is to not assume that everyone knows what's going on. Sometimes you have to explain something several times to different doctors.
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

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Jacques
Posts: 678
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Second opinions? Stomach cancer cells?

Postby Jacques » Wed Jul 26, 2017 11:19 pm

Lovenothate wrote:Thanks for the reply NHMike!
The nearest thing in Las Vegas I would assume is the Comprehensive Cancer Center so I'll be looking into that...

It looks like Comprehensive Cancer Center of Nevada is mainly a "for-profit" hospital. There are some websites out there that have reviews on them. For example, here is a French website that publishes reviews of employees there. There are also some websites that have reviews in English.
"Avantages
Large company who buys out many practices in the cities they occupy, therefore a selection of location to where you can work.
Disadvantages
Because of the size of the company, money is at the forefront in everything they do in this company. Patients are a number, and they find ways to recruit people from out of town to fill in the spots of employees who are wiser in working for more ethical doctors. What's important here is printing money for upper management, and the people who run the company…"
Source: https://www.glassdoor.fr/Avis/Comprehensive-Cancer-Centers-of-Nevada-Avis-E294764.htm

Lovenothate
Posts: 38
Joined: Tue Aug 16, 2016 3:13 am
Facebook Username: Emily.guzman

Re: Second opinions? Stomach cancer cells?

Postby Lovenothate » Thu Jul 27, 2017 12:08 am

Jacques wrote:
Lovenothate wrote:Thanks for the reply NHMike!
The nearest thing in Las Vegas I would assume is the Comprehensive Cancer Center so I'll be looking into that...

It looks like Comprehensive Cancer Center of Nevada is mainly a "for-profit" hospital. There are some websites out there that have reviews on them. For example, here is a French website that publishes reviews of employees there. There are also some websites that have reviews in English.
"Avantages
Large company who buys out many practices in the cities they occupy, therefore a selection of location to where you can work.
Disadvantages
Because of the size of the company, money is at the forefront in everything they do in this company. Patients are a number, and they find ways to recruit people from out of town to fill in the spots of employees who are wiser in working for more ethical doctors. What's important here is printing money for upper management, and the people who run the company…"
Source: https://www.glassdoor.fr/Avis/Comprehensive-Cancer-Centers-of-Nevada-Avis-E294764.htm


So should I not do a center like that? I want a good team behind her because I feel as though much can be done still towards curing her and soon I won't be able to go to her appointments and help track her.

Again, thank you all for your time.
Emily
daughter to DM dx Stage IV CRC @47 July 2016
total hysterectomy b/c ovarian mets abscites 6/16
Colostomy
Folfox 7/16
Lung spots 2mm each 9/16
Xeloda & Avastin 1/17
Shrinkage to lungs spots! 4/17
Break from Avastin/ Xeloda continued 7/17
Omentum mets/ lungs mets stable(possibly not malignant)
Folfiri 8/17
1 lung spot all along-clear abdomen scans chemo break until 4/4/17

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Second opinions? Stomach cancer cells?

Postby NHMike » Thu Jul 27, 2017 2:15 am

Lovenothate wrote:
Jacques wrote:
Lovenothate wrote:Thanks for the reply NHMike!
The nearest thing in Las Vegas I would assume is the Comprehensive Cancer Center so I'll be looking into that...

It looks like Comprehensive Cancer Center of Nevada is mainly a "for-profit" hospital. There are some websites out there that have reviews on them. For example, here is a French website that publishes reviews of employees there. There are also some websites that have reviews in English.
"Avantages
Large company who buys out many practices in the cities they occupy, therefore a selection of location to where you can work.
Disadvantages
Because of the size of the company, money is at the forefront in everything they do in this company. Patients are a number, and they find ways to recruit people from out of town to fill in the spots of employees who are wiser in working for more ethical doctors. What's important here is printing money for upper management, and the people who run the company…"
Source: https://www.glassdoor.fr/Avis/Comprehensive-Cancer-Centers-of-Nevada-Avis-E294764.htm


So should I not do a center like that? I want a good team behind her because I feel as though much can be done still towards curing her and soon I won't be able to go to her appointments and help track her.

Again, thank you all for your time.
Emily


We all have to make choices and sometimes they are tough choices.

If logistics weren't a huge issue, I'd do everything through Dana Farber Cancer Institute in Boston but this would mean driving about an hour to 90 minutes one-way every day, dealing with parking in a big city and probably a moderate amount of waiting around. This as opposed to going locally for treatment at a place that's lower-rated but where the people seem competent and caring. The folks that I spoke to in Boston told me that I should be fine with the chemo/radiation locally but I'm going into Boston for the surgery.

We haven't had experience with the Comprehensive Cancer Center nor done a huge amount of research into them so it would be hard for us to offer an opinion on how good they are. I can offer opinions on the places that I've used so far and I do see a difference between what we have locally and what's available at the top-ranked places. Ultimately you have to make the decision and you would do that with the best information available to you.
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

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: Second opinions? Stomach cancer cells?

Postby ACPdiddy » Thu Jul 27, 2017 7:01 pm

I would *highly* recommend getting to one of the top hospitals in LA, if at all possible. In my experience, it's surprisingly easy to get an appointment at those places. Insurance covers it to the same extent it covers your local hospital. And their expertise is head-and-shoulders above what you'll get at a local hospital (no offense to local hospitals). You obviously can't go there all the time from Vegas, but at key decision points like this, it's absolutely worth the trip to see what they might be able to do for you. And if it's a particular drug treatment they recommend, you can still have it administered at your local hospital.
Good luck.

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Second opinions? Stomach cancer cells?

Postby Bev G » Sat Jul 29, 2017 12:06 pm

Mike,

Are you not close to Dartmouth-Hitchcock? It's an excellent facility. Great docs and fully staffed and equipped. Both my husband and I got cancer care there, and we are delighted with the place. Best wishes to you.

Someone asked about FOLFIRI. The folfiri substitutes the oxy with irinotecan. Irinotecan is tough on the GI system, butt doesn't have the neurotoxin (oxy) that Folfox does.
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Second opinions? Stomach cancer cells?

Postby NHMike » Sat Jul 29, 2017 12:33 pm

Bev G wrote:Mike,

Are you not close to Dartmouth-Hitchcock? It's an excellent facility. Great docs and fully staffed and equipped. Both my husband and I got cancer care there, and we are delighted with the place. Best wishes to you.

Someone asked about FOLFIRI. The folfiri substitutes the oxy with irinotecan. Irinotecan is tough on the GI system, butt doesn't have the neurotoxin (oxy) that Folfox does.


I'm using Dartmouth-Hitchcock Norris Cotton in Nashua for chemo, Radiation Center of Greater Nashua for radiology and Brigham and Womens for surgery. DH is a NCI-designated Comprehensive Cancer Center in Lebanon and DH in Nashua is an affiliate. It is hard to argue with the national rankings of places like MGH, DFCI and B&W but I think that my local options are pretty good for chemorad.
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


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