Diagnosed while working abroad

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CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: Diagnosed while working abroad

Postby CF_69 » Fri Aug 30, 2019 10:18 am

I’m in Canada and my oncologist told me that at my stage (2A) that the post surgery options are quite different.

Specifically that in the USA I would get adjuvant chemo, and in Europe, I would not.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019
Clear CT - October 2020

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Diagnosed while working abroad

Postby Rikimaroo » Fri Aug 30, 2019 11:25 am

This place from what I heard is one of the top institutions around the world and big on cancer treatment.

https://www.heidelberg-university-hospital.com/home/

I am not sure how far you live from there, but I would assume there are other places.

Give them a call and as about colorectal surgery, neoadjuvant chemoradation, etc..Good Luck I hope everything works out especially since your at such an early stage you can typically beat it at a very high chance. Even folks with Stage 4 has beaten it.

I wish you well on your journey and folks here are great.

Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 31, 2019 3:41 pm

Pyro70 wrote:I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncology care in the world. If you move to the US now you’ll be eligible for special enrollment. Or you can wait until January - which would have some benefits. I also have German citizenship and I don’t care what people say about US healthcare, it’s better here for cancer treatment than anywhere else.


Thank you for pointing that out. I had the impression that the ACA kept getting chipped away at. It seemed risky, but now that I look, you're right. I could probably get a policy in my home state for approx $1k per month. Expensive, but possible.

The next two weeks will be important. I'm reluctant to do anything that will delay getting this underway, but now I know some important stuff to ask the doctors.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 31, 2019 3:52 pm

Rikimaroo wrote:This place from what I heard is one of the top institutions around the world and big on cancer treatment.

https://www.heidelberg-university-hospital.com/home/

[...]

Rikimaroo


Thank you. Yes, I see the clinic in Heidelberg and the clinic in Erlangen (for CR cancer) mentioned often in the darmkrebs.de forum. There is much less traffic on that board, but I did get some advice when I posted my question there. Apparently there are thirteen "top" cancer centers in Germany, and those are the ones to look at for getting surgery done. For anyone interested, here is the response I got on that forum https://www.darmkrebs.de/forum/darmkrebsforum/15277.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 31, 2019 3:58 pm

CF_69 wrote:I’m in Canada and my oncologist told me that at my stage (2A) that the post surgery options are quite different.

Specifically that in the USA I would get adjuvant chemo, and in Europe, I would not.


Thanks, I will ask the doctors about that. My understanding is that, absent some extra risk factors, there is a lack of statistical evidence that adjuvant chemo makes a difference, so some places don't recommend it. I don't know if I get a choice or not. It sounds like if one does Total NeoAdjuvant treatment, then the difference wouldn't matter because you get all the chemo before surgery.
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 31, 2019 4:13 pm

Rock_Robster wrote:Sure jts, I’ll have a go. Just remember these are generalisations and may not apply to every country/hospital/doctor.

The protocols for stages I-III will be pretty similar. The main two differences are:
- Europe tends toward “short-course” radiation before surgery (ie higher daily dose over 5 days, then surgery soon after). The US favours long-course radiation (lower daily dose over 25 days, with surgery typically following 8 weeks later after the radiation has had full effect). There is evidence to suggest the two have very similar outcomes; obviously the EU approach is much faster, but patients do tend to report more side effects - some temporary, some permanent). I suspect (?) The EU approach would rule out the Watch & Wait protocol to potentially avoid surgery.
- I believe Europe favours FOLFIRI over FOLFOX for chemo. In the neoadjuvant setting they’ve been shown to be similar, but I believe FOLFOX has the edge in adjuvant (after surgery). FOLFOX has the downside of a greater risk of long-term side effects.
- Surgery-wise, I suspect the two are similar. Lapro or robotic are pretty common for RC now, and the choice of surgery (LAR, ULAR, APR, TaTME) would depend on the height, size and stage of your tumour.

I suspect the US is also a bit ahead on Total Neoadjuvant Therapy, if this is something of interest after research (or questions!).

If we’re talking stage IV then things change up a notch. But I’ll hold off on that here, and let’s hope we never need this conversation.

Best of luck,
Rob


Thank you. This is very helpful. I feel like I am shopping for a new car, but the "car" is me getting poisoned, blasted with radiation, and having my colon cut up. But looking at all the treatment and surgery options, and reading papers about their effectiveness feels a lot like shopping for a big thing. It is better than directly thinking about my own mortality.

One anecdote about German colon care. The first two times I was at the EDH doctor (one for the urgent visit, and then for the colonoscopy) both doctors kept talking about "the dignity of the tumor". This was before I realized how serious the situation was, so I was more concerned about the dignity of me. From context I guess they were mixing up the German "stellung" or "staging".

Thanks,
jts
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Sat Aug 31, 2019 4:14 pm

DarknessEmbraced wrote:Welcome to the group and sorry for your diagnosis!*hugs* I don't know about cancer surgeons but I wanted to send you support and hugs! I hope it all works for you!*hugs*


Thank you. *Hugs* back!

jts
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Sat Aug 31, 2019 8:30 pm

jts wrote:
Rock_Robster wrote:Sure jts, I’ll have a go. Just remember these are generalisations and may not apply to every country/hospital/doctor.

The protocols for stages I-III will be pretty similar. The main two differences are:
- Europe tends toward “short-course” radiation before surgery (ie higher daily dose over 5 days, then surgery soon after). The US favours long-course radiation (lower daily dose over 25 days, with surgery typically following 8 weeks later after the radiation has had full effect). There is evidence to suggest the two have very similar outcomes; obviously the EU approach is much faster, but patients do tend to report more side effects - some temporary, some permanent). I suspect (?) The EU approach would rule out the Watch & Wait protocol to potentially avoid surgery.
- I believe Europe favours FOLFIRI over FOLFOX for chemo. In the neoadjuvant setting they’ve been shown to be similar, but I believe FOLFOX has the edge in adjuvant (after surgery). FOLFOX has the downside of a greater risk of long-term side effects.
- Surgery-wise, I suspect the two are similar. Lapro or robotic are pretty common for RC now, and the choice of surgery (LAR, ULAR, APR, TaTME) would depend on the height, size and stage of your tumour.

I suspect the US is also a bit ahead on Total Neoadjuvant Therapy, if this is something of interest after research (or questions!).

If we’re talking stage IV then things change up a notch. But I’ll hold off on that here, and let’s hope we never need this conversation.

Best of luck,
Rob


Thank you. This is very helpful. I feel like I am shopping for a new car, but the "car" is me getting poisoned, blasted with radiation, and having my colon cut up. But looking at all the treatment and surgery options, and reading papers about their effectiveness feels a lot like shopping for a big thing. It is better than directly thinking about my own mortality.

One anecdote about German colon care. The first two times I was at the EDH doctor (one for the urgent visit, and then for the colonoscopy) both doctors kept talking about "the dignity of the tumor". This was before I realized how serious the situation was, so I was more concerned about the dignity of me. From context I guess they were mixing up the German "stellung" or "staging".

Thanks,
jts

No worries jts - what you describe is very familiar. I definitely did (do) the same - immersing myself in the science of it rather than dwelling on what it all really means for me. Also gives me some sense of control, I guess, however misplaced that might be. I like the car shopping metaphor - actually I joked to my wife that I spent more time shopping for my last suit than choosing my oncologist; but I guess time pressure prevails and sometimes a quick decision is a good decision!

Indeed it’s a super un-fun process and very disruptive, but hopefully confined to an early enough stage and you can get through this and back to your ‘new normal’ ASAP (a phrase I hate, but I’ll go with it for now).

That is very amusing about “stellung” your tumour - in fact I can even picture German doctors *meaning* the “dignity” of the tumour! The Dutch doctors that delivered my news were incredibly professional and thorough, but possibly the least well-equipped in the “delivering bad news kindly” capacity. Basically told me I had very little hope and to go home to my family. The story all changed once I got home (thankfully), and more so after some treatment successes. The one thing I’ll be eternally grateful to them for for however is in the week it took me to get my life packed up, without me even asking they did all my genomic testing, preserved all my samples and biopsies, wrote everything up in English, gave me all my images on DVD, and sent me off with a package I could drop on my onc’s desk here on day 1 and get started! I went from living in The Hague to starting chemo in Australia in about 2 weeks :shock:
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

Pyro70
Posts: 156
Joined: Mon Jan 21, 2019 4:25 pm

Re: Diagnosed while working abroad

Postby Pyro70 » Sun Sep 01, 2019 5:24 pm

jts wrote:
Pyro70 wrote:I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncology care in the world. If you move to the US now you’ll be eligible for special enrollment. Or you can wait until January - which would have some benefits. I also have German citizenship and I don’t care what people say about US healthcare, it’s better here for cancer treatment than anywhere else.


Thank you for pointing that out. I had the impression that the ACA kept getting chipped away at. It seemed risky, but now that I look, you're right. I could probably get a policy in my home state for approx $1k per month. Expensive, but possible.

The next two weeks will be important. I'm reluctant to do anything that will delay getting this underway, but now I know some important stuff to ask the doctors.


There have been no relevant changes to the ACA law. Prices went up though, but not really due to law changes. One thing about the ACA, is make sure your cancer center of choice is in-network. Also for most plans the network is limited to your home state. If your cancer center of choice isn’t in your home state, then just move to the other state and get a plan there. Best of luck. All of us stage IV patients are envious of your situation.
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

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Mon Sep 02, 2019 4:32 pm

Thanks to everyone for replying. I felt the need to post a follow-up.

I had my MRI today and it seems to be mixed, as I understand it. The tumor is about 6cm long, not round like I had pictured it, but more an irregular thickening of the rectal wall. The part covered by tumor is at least 8mm from the mesorectal fascia. The tumor starts 5cm above the anocutaneous line. I'm not sure if thats low, or dangerously low.

The bad news is that on the other side he can't distinguish the seminal vescicles from the diseased rectum. I read that this is a rare complication, but there it is. For the last 2-3 weeks my urethera has been rather inflamed, which is unusual. The Hasartzt is supposed to check me for infection tomorrow. Let's hope it's just infection. On the balance I've enjoyed having reproductive organs.

Also the MRI identified one big fat juicy lymph node of 12mm. Last week the CT radiologist had pointed out 5 that were slightly enlarged, but not enough to be officially suspicious (they might be swollen because of the biopsy). The MRI radiologist says he only observed this one big one. It seems it's not so much near the tumor, which I suppose it bad, but still in the region, so not considered metastatic. There is also a bit about perirectals striking vascular structures, which sounds scary, but I don't really understand it.

Part of the MRI scan made my upper abdomen spasm and my insides dance around. The technician said it's normal, but a weird feeling.

I swam a couple km and got out for a 120km ride on the weekend. It's ironic that I am feeling more fit than I have any time since I moved from the US 5 years ago, but this treatment and surgery that I need is going to wallop me back down, and I may never get back. Living it up while I can.

jts
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

CF_69
Posts: 109
Joined: Sat Dec 22, 2018 9:44 pm

Re: Diagnosed while working abroad

Postby CF_69 » Tue Sep 03, 2019 6:00 am

I had 2 suspicious nodes that turned out not to be cancerous.

You won’t know for sure until they take them out. So, I walked around thinking I was 3B for all those months, but it turned out I was 2A.

I have my 6 month scan coming up in a few weeks.

It’s a long road for sure.

I also felt physically fine at diagnosis. Starting to feel that way again 9 months after my treatment started.

Good luck with everything.
47 at diagnosis
Rectosigmoid junction
Adenocarcinoma
2.8 x 1.8 x 3.5 cm
G2
T3N0M0
CEA:
December 2018 - 1.9
September 2019 - 2.5
March 2020 - 2.3
September 2020 - 2.5
Xeloda / radiation x 25
Laparoscopic LAR April 2019
0 of 12 nodes
Stage 2A
4 cycles of adjuvant Xeloda
MRI on liver for 2mm hypodensity not suspicious.
Clear CT - September 2019
Clear CT - October 2020

jts
Posts: 58
Joined: Sat Aug 24, 2019 3:07 pm

Re: Diagnosed while working abroad

Postby jts » Wed Sep 11, 2019 4:54 am

Thanks to everyone for your responses. The saga of rectal cancer treatment in Germany continues.

I have had some more tests and finally started the process of arranging treatment. The clinic that did the colonoscopy arranged for me to meet with a surgeon at the hospital they normally work with. This is a relatively small hospital in my city, but they surgeon says they have two doctors who do these surgeries, and that they do about 40 rectal cancer surgeries per year. The surgeon I talked to did not speak much English, so that meeting wasn't so informative (my German is ok, but not for medical issues). They also did a rectal ultrasound and concluded the tumor stage is T3. They have a "tumor board" and my case will be on the agenda when they meet this week.

I also met with a local Oncologist the original clinic recommended and that was extremely helpful. He recommended about a month of chemo (Xeloda pills) and radiation, then recovery, then surgery, then depending on the outcome of the surgery, adjuvant chemo. I asked about TNT and he says there isn't evidence to show a benefit for my case. They can start as soon as next week, and he recommends starting ASAP. He gave a list of hospitals and surgeons, both local and at three of the "Spitzenzentrum" for cancer treatment. He said I can keep looking for the surgeon while the chemoradiation is going.

I also have an appointment with the other local hospital certified for CR cancer surgery, and one next week with the Spitzenzentrum in Berlin (Charite).

The MRI and CT both show several suspicious lymph nodes, but as I understand they are on the opposite side from the tumor, a little farther away. In the ultrasound the Dr could not find any suspicious lymph nodes near the tumor. I asked if that is a good or bad sign, and she said they can't say until they take them out and test them; there are lots of reasons the lymphnodes may puff up. (but I keep thinking, given the cancer there, what's the most likely cause, really?) Just gotta wait.

Is 40 surgeries per year between two doctors enough to be conspired a "high volume" hospital, like everyone recommends? I was told they do the surgery lathroscopically, but not sure if its the robot-assisted type.

My case seems pretty straightforward as far as neoadjuvant therapy. Does it matter where I get the radiotherapy done? I contacted the hospital in Heidelberg but have not made an appointment, and I'm not sure that I will. It's a bit of a trip. They have the fancy proton and carbon ion machines, but those seem to be used for recurrences and more advanced cases. I expect I am better off sticking with the more common well-understood radiotherapy, even if it is more damaging.

The oncologist had some foods to avoid. Grapefruit was one, and that seems like common advice, but he also said frozen pizza "and stuff like that". I'll certainly ask him again later, but any idea what "stuff like that" he was getting at? Anything with artificial preservatives? He didn't recommend any vitamins or supplements in preparation; just eat healthy.

jts
Male 42 — stage IV RC
NRAS mutant - KRAS, BRAF wt
08/2019 DX 6 cm long tumor
09-10/2019 Chemo-radiation
12/2019 TME Surgery, clear margins, 7/16 nodes positive
Pathology: ypT3 ypN2b M0
01-06/2020 - FOLFOX
CEA only goes up during chemo: 2.4 --> 6.2
07/2020 6 mm tumor in lung, was growing fast during chemo
09/2020 VATS
01/2021 new 5mm cyst in liver, CEA continues to increase --> 8
06/2021 CEA down to 6. Cyst not visible anymore.
05/2023 CEA fluctuates between 4 and 6. Scans have been clear.

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Wed Sep 11, 2019 5:42 am

Hi jts, well done - sounds like some good progress made.

Hopefully the lymph nodes turn out to be nothing; but not the end of the world if not. I had 3 suspicious lymph nodes before treatment; after the chemoradiation, 1 out of 27 nodes taken tested positive (a good ratio, I’m told).

Interesting they are suggesting long-course radiation - to me this makes sense with a T3 tumour (same as me), though I did think Europe favoured short-course (as they proposed for my case). The Xeloda with radiation is normal, and should be pretty tolerable (it will be at a lower dose than chemo-only Xeloda).

In terms of surgical volumes, I read one study in the States looking at outcomes and complication rates vs volumes, and they concluded that 50 procedures per annum should be the safe cutoff, so in this case they’re right on the edge. I suppose with only 2 surgeons at the hospital it’s a bit better too - if one guy is doing most of them then that’s almost one per week - perhaps not too bad! This study also used 150 per year as a “high volume” hospital target (my liver surgeon did around this many personally). I’d be asking about the individual surgeon’s volumes too, as this as been shown to be more important than the hospital’s volumes (which came second as a factor). The best outcomes were from high-volume surgeons in high-volume facilities. Robotic is nice but has not been shown to have major benefit over lapro, either oncologically or complications-wise. It is easier on the surgeon, however.

Where you do radiotherapy does not really matter. Pick a place close to home, as you’ll be going every day. You should have a radiation oncologist whom you can check with to be sure their facilities match what he wants you to have (mine was IMRT). You could indeed look into proton therapy too, but I’m not sure if it’s necessary or appropriate in your case.

Grapefruit is usually avoided because it interacts unfavourably with most medications. Usually oncologists will recommend avoiding eating processed foods, processed and red meats, and minimising alcohol. However this is more about surgical fitness, long-term health outcomes and reducing recurrence risk rather than short-term treatment guidance. For many folk, the short term priority is whatever foods they can handle easily and keeps them from losing weight during treatment. I can bore you with my routine at some point if you like.

Two things you do want to avoid during chemoradiation however are excessive folic acid (it plays badly with Xeloda), and vitamin E (is radioprotective for all cells - good and bad).

Cheers
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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

Re: Diagnosed while working abroad

Postby NHMike » Wed Sep 11, 2019 7:31 am

jts wrote:
Pyro70 wrote:I was in a similar situation. I was working in Indonesia when diagnosed. Obviously staying in Indo wasn’t an option so I came back to the US. At first I was worried about Insurance, but with the ACA it’s really not an issue if you can afford it. For about $12k/year you get access to the best oncology care in the world. If you move to the US now you’ll be eligible for special enrollment. Or you can wait until January - which would have some benefits. I also have German citizenship and I don’t care what people say about US healthcare, it’s better here for cancer treatment than anywhere else.


Thank you for pointing that out. I had the impression that the ACA kept getting chipped away at. It seemed risky, but now that I look, you're right. I could probably get a policy in my home state for approx $1k per month. Expensive, but possible.

The next two weeks will be important. I'm reluctant to do anything that will delay getting this underway, but now I know some important stuff to ask the doctors.


I'd guess that it depends on the state where you live. The options in my state (NH) and the adjacent state (MA) have greatly improved the past two years.
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

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

Re: Diagnosed while working abroad

Postby NHMike » Wed Sep 11, 2019 7:34 am

jts wrote:
The oncologist had some foods to avoid. Grapefruit was one, and that seems like common advice, but he also said frozen pizza "and stuff like that". I'll certainly ask him again later, but any idea what "stuff like that" he was getting at? Anything with artificial preservatives? He didn't recommend any vitamins or supplements in preparation; just eat healthy.

jts


I believe that grapefruit amplifies the effects of some medications.

Pizza is fat bound in carbs and has the deadly combination of cheese in bread. Maybe its the caloric issues. You can get frozen pizza without artificial preservatives.
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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