Diagnosed while working abroad

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Zod
Posts: 22
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Diagnosed while working abroad

Postby Zod » Wed Sep 11, 2019 4:35 pm

Grapefruit interferes with how you liver breaks down certain medications and therefore can increase the accumulated concentration of those medications in your body. My medical team says my meds (folfoxiri plus some ancillary meds) are not affected by this but I'm avoiding grapefruit anyway.
https://www.healthline.com/nutrition/gr ... edications

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

Re: Diagnosed while working abroad

Postby jts » Mon Sep 23, 2019 3:47 am

Hi,
Thanks everyone for the replies. I thought I would post an update from last week. There are two hospitals in my city that are certified for colo-rectal cancer. The smaller one is the one I visited before (they do about 40 rectal surgeries per year, but I had trouble communicating with the surgeon). I also visited the other, larger hospital. The surgeon I talked to (who is not the colorectal surgeon) said they do about 50 surgeries per year. They discussed my case in their tumor board also and gave the same advice: chemoradiation with Xeloda.

My wife also got me an appointment with an oncologist at the Darmkrebs Spitzencentrum in Berlin. This guy is an author on lot of studies specifically on chemo for colorectal cancer, so at least there would not be some new treatment method going on that he doesn't know about. He also chased down one of their surgeons for us. The guy was apparently on a break between surgeries. It seems he does colorectal surgeries exclusively and does a lot of them. The oncologist said that my case is really straightforward and their guidelines will always say chemoradiation is the way to go. There was some question about whether the surgeon would recommend skipping it and operating right away, but he also wants to shrink the tumor. I asked the oncologist about neoadjuvant chemo, but he is very against it.

Since I'm probably stage 3 and will have to do adjuvant chemo anyway, the rationale for neoadjuvant chemo seems like a great idea. Try to stunt or kill any micrometastes early, instead of giving them another 4 months to establish themselves and grow while I'm doing radiation, rest, and surgery. I tried to bring it up with the oncologists, but it seems in Germany the S3 guidelines that the certified clinics have to follow basically categorically forbid it. It's is the expert consensus here. You can see the guidelines here https://www.leitlinienprogramm-onkologie.de/index.php?id=16&type=0, and the actual relevant part (in English) is page 172 here https://www.leitlinienprogramm-onkologie.de/fileadmin/user_upload/Downloads/Leitlinien/Kolorektales_Karzinom/Version_2/GGPO_Guideline_Colorectal_Cancer_2.1.pdf.

This is only speculating, but I can think of two reasons. One is that there is no accepted recipe for neoadjuvant chemo. There's lots of trials with different processes, but how can they fit it in to the guidelines if there is no clear-cut recipe? Second, from the perspective of the doctors, what if they start doing neoadjuvant chemo and they studies finish and show no significant benefit. Then they have given chemo to some fraction of the patients who didn't need it. From the patient's perspective, this aloof reasoning this is really frustrating. I would gladly take the risk of doing some unnecessary chemo if there's even a chance of improving my odds of survival.

Last week I got some Xes marked on my hips for the radiation and have my first session today. I started taking my Xeloda this morning and feel totally normal. I'm actually really hungry still, but am trying to wait until lunch. Over the weekend my wife and I tried to clean and sterilize the house as well as we could. Doorknobs, light switches, computer stuff, archaeology to the back of the refrigerator. I'm still hauling my kid to kindergarten and going to work like normal. I got out for a long ride on the weekend took the kid to the zoo.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Mon Sep 23, 2019 4:36 am

Hi jts,

Thanks for the update. Sounds like a productive week or so!

A few comments from my side.

- Surgeon-wise, if given the choice I would always go with the surgeon who specialises in (ie solely does) colorectal surgery; particularly for locally advanced (T3/T4) RC. There are a lot of longer-term quality-of-life outcomes from RC surgery beyond just ‘getting all the cancer’ which ride heavily on the skills and experience of the surgeon.

- TNT is indeed an interesting one. A recent systematic review of all research to date concluded that neoadjuvant chemotherapy in RC significantly increases the chance of a pathological complete response (pCR) to chemoradiotherapy (+39%). There has not been sufficient time however to establish whether disease free survival and overall survival is improved by this. However it has separately been established that pCR is in itself a strongly positive prognostic factor, so in my mind anything that increases your chance of this occurring is a good thing. My oncologist (heavily research-focussed) employs an “earlier is better” approach to chemotherapy. Given you are not talking about doing more chemo overall but rather the timing of it, I too would be very interested in pursuing TNT based on preliminary results.

https://www.ncbi.nlm.nih.gov/m/pubmed/31318794/

The challenge you seem to be running into here is the same that I did in the Netherlands - within a publicly-funded health system there is often little scope for treatment beyond the approved protocol, even where emerging research suggests the outcomes are more favourable. This leaves you in a tough spot. I don’t know enough about the system there, but I suppose the most extreme case could be that TNT is only available outside of the country. Unless such a thing as private (ie patient- or insurance-funded) clinics exist in DE? Then perhaps you could do neoadjuvant chemo and chemorad privately, then see a high-volume public surgeon (which is essentially what I did in Australia).

- You make reference to this so I’ll comment; I have a personal interest in surgery-induced metastasis, and things patients can do to reduce the risk of this. I’ve been applying these for my surgeries; I don’t know if it’s helped but it makes me feel better :). When you get closer to surgery I’d be happy to share my learnings from readings so far, if you’re interested.

Good luck for the radiation - hopefully it’s as much of a non-event for you as it was for me. Oh and if you’re hungry then don’t hesitate to eat; it might get a bit tougher later on so a bit of buffer isn’t a bad thing to have!

Cheers,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; 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
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

NHMike
Posts: 2315
Joined: Fri Jul 21, 2017 3:43 am

Re: Diagnosed while working abroad

Postby NHMike » Mon Sep 23, 2019 6:42 am

jts wrote:Hi,
Thanks everyone for the replies. I thought I would post an update from last week. There are two hospitals in my city that are certified for colo-rectal cancer. The smaller one is the one I visited before (they do about 40 rectal surgeries per year, but I had trouble communicating with the surgeon). I also visited the other, larger hospital. The surgeon I talked to (who is not the colorectal surgeon) said they do about 50 surgeries per year. They discussed my case in their tumor board also and gave the same advice: chemoradiation with Xeloda.

My wife also got me an appointment with an oncologist at the Darmkrebs Spitzencentrum in Berlin. This guy is an author on lot of studies specifically on chemo for colorectal cancer, so at least there would not be some new treatment method going on that he doesn't know about. He also chased down one of their surgeons for us. The guy was apparently on a break between surgeries. It seems he does colorectal surgeries exclusively and does a lot of them. The oncologist said that my case is really straightforward and their guidelines will always say chemoradiation is the way to go. There was some question about whether the surgeon would recommend skipping it and operating right away, but he also wants to shrink the tumor. I asked the oncologist about neoadjuvant chemo, but he is very against it.

Since I'm probably stage 3 and will have to do adjuvant chemo anyway, the rationale for neoadjuvant chemo seems like a great idea. Try to stunt or kill any micrometastes early, instead of giving them another 4 months to establish themselves and grow while I'm doing radiation, rest, and surgery. I tried to bring it up with the oncologists, but it seems in Germany the S3 guidelines that the certified clinics have to follow basically categorically forbid it. It's is the expert consensus here. You can see the guidelines here https://www.leitlinienprogramm-onkologie.de/index.php?id=16&type=0, and the actual relevant part (in English) is page 172 here https://www.leitlinienprogramm-onkologie.de/fileadmin/user_upload/Downloads/Leitlinien/Kolorektales_Karzinom/Version_2/GGPO_Guideline_Colorectal_Cancer_2.1.pdf.

This is only speculating, but I can think of two reasons. One is that there is no accepted recipe for neoadjuvant chemo. There's lots of trials with different processes, but how can they fit it in to the guidelines if there is no clear-cut recipe? Second, from the perspective of the doctors, what if they start doing neoadjuvant chemo and they studies finish and show no significant benefit. Then they have given chemo to some fraction of the patients who didn't need it. From the patient's perspective, this aloof reasoning this is really frustrating. I would gladly take the risk of doing some unnecessary chemo if there's even a chance of improving my odds of survival.

Last week I got some Xes marked on my hips for the radiation and have my first session today. I started taking my Xeloda this morning and feel totally normal. I'm actually really hungry still, but am trying to wait until lunch. Over the weekend my wife and I tried to clean and sterilize the house as well as we could. Doorknobs, light switches, computer stuff, archaeology to the back of the refrigerator. I'm still hauling my kid to kindergarten and going to work like normal. I got out for a long ride on the weekend took the kid to the zoo.


I'm a little unclear on what you wrote. You wrote:

- and their guidelines will always say chemoradiation is the way to go
- but he also wants to shrink the tumor

and then,

- I asked the oncologist about neoadjuvant chemo, but he is very against it.

and, in the guidelines:

- Neoadjuvant chemotherapy before or after radiochemotherapy (or as neoadjuvant therapy alone without radio(chemo)therapy) maynot be performed outside of studies.

In the United States, there is the option for Neoadjuvant Chemotherapy but it's something fairly recent as part of Total Neoadjuvant Therapy. The traditional approach and the one they did on me is Neoadjuvant Chemotherapy and Radiation. The US did clinical trials on the new stuff starting maybe two years ago and I saw many here using TNT. The advantages of TNT are that some percentage of patients that go on it won't need surgery.

In your case, they will only do Neoadjuvant Chemo and Radiation, then surgery, and I assume adjuvant chemo. In my case, the radiation shrunk the tumor over 90% which, I assume, made it a lot easier to operate on.
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

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

Re: Diagnosed while working abroad

Postby jts » Wed Oct 16, 2019 3:27 am

NHMike wrote:
I'm a little unclear on what you wrote. You wrote:

- and their guidelines will always say chemoradiation is the way to go
- but he also wants to shrink the tumor

and then,

- I asked the oncologist about neoadjuvant chemo, but he is very against it.

and, in the guidelines:

- Neoadjuvant chemotherapy before or after radiochemotherapy (or as neoadjuvant therapy alone without radio(chemo)therapy) maynot be performed outside of studies.

In the United States, there is the option for Neoadjuvant Chemotherapy but it's something fairly recent as part of Total Neoadjuvant Therapy. The traditional approach and the one they did on me is Neoadjuvant Chemotherapy and Radiation. The US did clinical trials on the new stuff starting maybe two years ago and I saw many here using TNT. The advantages of TNT are that some percentage of patients that go on it won't need surgery.

In your case, they will only do Neoadjuvant Chemo and Radiation, then surgery, and I assume adjuvant chemo. In my case, the radiation shrunk the tumor over 90% which, I assume, made it a lot easier to operate on.


Yes, I was talking about Total Neoadjuvant therapy. The oncologists I talked to either didn't seem to know about it or were against it, and the guidelines they have to follow seem to forbid it.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

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

Re: Diagnosed while working abroad

Postby jts » Wed Oct 16, 2019 3:45 am

I am about half way through 6 weeks of chemo-radiation now. I am surprised how uncomfortable it is already after three weeks. The rad doctor gave me some anti-inflammatory drug, and I got a cream called Bepanthen that is soothing on the outside. But it is getting really difficult to concentrate at work.

As far as the Xeloda, the nausea got mostly better after the first week. My appetite is less than it normally would be and it's harder to find foods that are appetizing, but not that bad. My wife's obsession with preventing me from eating foods that I normally find appetizing is more of a problem. Her reasoning seems to be: she believes I got cancer because of my diet, therefore anything I like will make the cancer worse. There's no law that says people's beliefs have to make sense, but it makes eating a challenge.

I seem to have an almost unlimited capacity for resting now. Normally I would not like to lay down if I'm not tired, but right now any quiet time is good for a nap. On the weekends I basically have to pick one activity. It used to be that I could do a 3 hour bike ride, then take the kid swimming or to the park, then stay up late doing stuff on the computer. This month any one of those will leave me feeling wiped out.

I'm still working, and still riding my bike to/from work unless it's pouring rain, so I'm happy about that.

I have tentative date for surgery in mid Dec. There is some confusion about my next MRI and CT. The receptionist at the Roentgen practice says they have to be at least a week apart, but the oncologist and surgeon who want the scans done say they can be done on the same day. I really don't want to do the surgery next year, because that will be 11+ weeks after CR ends, which is supposedly not good. These little obstacles can add a week of delay here and there, and suddenly it's xmas/newyears.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

MeAndMine
Posts: 146
Joined: Mon Aug 05, 2019 2:40 pm

Re: Diagnosed while working abroad

Postby MeAndMine » Wed Oct 16, 2019 2:13 pm

It’s good that you can nap. They say you heal best when sleeping. I am tired but can hardly sleep, I think too much. Sleep as much as you can.

I’m glad they gave you things to help along the way. That really is good that you have something to help early.

I know what you mean about food. I don’t want any of it. Are you eating low residue? It’s supposed to help you go to the bathroom less, so less irritation.

Hang in there and take it one day at a time. You’re half way there!
F 56 non-smoker
8/5/2019 - Colonoscopy - 4-5 cm rectal mass, 2-3 cm proximal to anal verge and 6mm polyp
8/13/2019 - CT - No mets
8/19/2019 - Rectum: Adenocarcinoma arising from tubulovillous adenoma. Descending colon: tubular adenoma
8/23/2019 First visit with surgeon
8/26/2019 First visit with oncologist
8/26/2019 MRI
CEA 8/19/19=3.9, 8/26/19=7.1
9/6/2019 - T3N2a
9/11/2019 - Radiation begins - 5.5 weeks along with oral capecitabine

NHMike
Posts: 2315
Joined: Fri Jul 21, 2017 3:43 am

Re: Diagnosed while working abroad

Postby NHMike » Wed Oct 16, 2019 4:09 pm

jts wrote:
NHMike wrote:
I'm a little unclear on what you wrote. You wrote:

- and their guidelines will always say chemoradiation is the way to go
- but he also wants to shrink the tumor

and then,

- I asked the oncologist about neoadjuvant chemo, but he is very against it.

and, in the guidelines:

- Neoadjuvant chemotherapy before or after radiochemotherapy (or as neoadjuvant therapy alone without radio(chemo)therapy) maynot be performed outside of studies.

In the United States, there is the option for Neoadjuvant Chemotherapy but it's something fairly recent as part of Total Neoadjuvant Therapy. The traditional approach and the one they did on me is Neoadjuvant Chemotherapy and Radiation. The US did clinical trials on the new stuff starting maybe two years ago and I saw many here using TNT. The advantages of TNT are that some percentage of patients that go on it won't need surgery.

In your case, they will only do Neoadjuvant Chemo and Radiation, then surgery, and I assume adjuvant chemo. In my case, the radiation shrunk the tumor over 90% which, I assume, made it a lot easier to operate on.


Yes, I was talking about Total Neoadjuvant therapy. The oncologists I talked to either didn't seem to know about it or were against it, and the guidelines they have to follow seem to forbid it.


I looked around at the protocols for several countries a while ago and it seems like a lot of countries use the US guidelines. But it can take a while for them to catch up.
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

User avatar
CRguy
Posts: 10020
Joined: Sun Feb 10, 2008 6:00 pm

Re: Diagnosed while working abroad

Postby CRguy » Wed Oct 16, 2019 5:28 pm

jts wrote:My wife's obsession with preventing me from eating foods that I normally find appetizing is more of a problem. Her reasoning seems to be: she believes I got cancer because of my diet, therefore anything I like will make the cancer worse. There's no law that says people's beliefs have to make sense, but it makes eating a challenge.

Perhaps also counterintuitive BUTT this may assuage your wife's zeal for dietary terrorism : :shock:
from years of vet practice, when cats were hospitalized we would deliberately not feed their normal favorite foods, because they would then often return home and NOT eat the diet which was fed / associated with the hospital ( cats HATE vet hosptials for the most part ! ) SO tell your wife that by letting you eat what appeals to you now, you may well develop a dietary aversion to it once the chemo ceases ????/ This IS true BTW and at least worth a try. My taste buds went straight to hell during any chemo :twisted:

jts wrote:There is some confusion about my next MRI and CT. The receptionist at the Roentgen practice says they have to be at least a week apart, but the oncologist and surgeon who want the scans done say they can be done on the same day. I really don't want to do the surgery next year, because that will be 11+ weeks after CR ends, which is supposedly not good. These little obstacles can add a week of delay here and there, and suddenly it's xmas/newyears.

If they are normal "with IV contrast " CTs and MRIs ... there is a good reason to separate them as both types of contrasts are potentially nephrotoxic and the scan clinic may be wanting to avoid overloading your kidneys with the stuff ????

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Sat Oct 19, 2019 6:51 am

Hey jts, thanks for the update and great you’re halfway through. Indeed it can get a little rough from here, but the good news is that it definitely gets better quickly once the treatment is done. The two best things I found during radiation were a bidet attachment for my toilet (to avoid wiping), and MooGoo moisturiser (though you may be past that now if you have something medicated).

I absolutely empathise on the fatigue. Radiation really takes it out of you, more than you might realise at the time. Keeping moving is good but there were a couple of days there I literally hardly left the couch. Just go easy on yourself, as you know it’s all temporary.

I’ve never heard the week between MRI & CT thing, and I’ve definitely had them both on the same day before (including in Europe). However CRGuy’s suggestion about contrast exposure certainly has some logic. In terms of surgery timing, I agree before Xmas would be better; they used to say 8 weeks after radiation is ideal but some recent Cleveland Clinic research suggests the response continues to improve out to 10 weeks, so my surgeon went with 9 weeks as a hedge. The other consideration is whether you want to be in hospital over the holiday period; here they try to avoid that after surgery as the staffing is pretty limited. May not be an issue in Germany though. With a mid-Dec op though it sounds like a pretty good chance you’d be home for the holidays.

Good luck for the remaining few weeks - hope it flies by!

Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; 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
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

NHMike
Posts: 2315
Joined: Fri Jul 21, 2017 3:43 am

Re: Diagnosed while working abroad

Postby NHMike » Sat Oct 19, 2019 10:48 am

I did not get a CT after Radiation/Chemotherapy. I just had the staging MRI at the surgeon's request. It's possible that protocols have changed since then though.
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

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

Re: Diagnosed while working abroad

Postby jts » Mon Oct 28, 2019 4:16 am

MeAndMine wrote:It’s good that you can nap. They say you heal best when sleeping. I am tired but can hardly sleep, I think too much. Sleep as much as you can.

I’m glad they gave you things to help along the way. That really is good that you have something to help early.

I know what you mean about food. I don’t want any of it. Are you eating low residue? It’s supposed to help you go to the bathroom less, so less irritation.

Hang in there and take it one day at a time. You’re half way there!


Thanks. I looked up the low residue diet, and have dried to adjust my eating based on that. My bigger problem is that, between the location of the tumor and the inflammation, I often end up running to the bathroom even if it's just gas. On a bad night I might make 5-6 trips to the bathroom and end up effectively not going at all. But the imodium and anti-cramp medicine and lots of sleep has helped.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

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

Re: Diagnosed while working abroad

Postby jts » Mon Oct 28, 2019 4:32 am

CRguy wrote:Perhaps also counterintuitive BUTT this may assuage your wife's zeal for dietary terrorism : :shock:
from years of vet practice, when cats were hospitalized we would deliberately not feed their normal favorite foods, because they would then often return home and NOT eat the diet which was fed / associated with the hospital ( cats HATE vet hosptials for the most part ! ) SO tell your wife that by letting you eat what appeals to you now, you may well develop a dietary aversion to it once the chemo ceases ????/ This IS true BTW and at least worth a try. My taste buds went straight to hell during any chemo :twisted:


Thanks. Yes, I have pointed that out. In fact I already feel that I've lots some of my favorite foods because I ate them in those first two weeks when I was really hungry, but really nauseous. Kartoffelgratin at the cafeteria on Thursdays used to be a highlight of my week, but I can't stand to look at it now.

Besides the food, the harder part I find is constantly being blamed for getting cancer. By any reasonable standard I would have been considered really low risk for getting this disease. Bad luck just happens some times. In some people's minds, though, there is no bad luck. It must have been caused by some moral failure. Being vegetarian and liking cheese, even if I don't eat very much, is what she has settled on. Preferring bananas and apples over grapes and watermelon is also a cause of cancer. The proof is that I have cancer! Belief can be stronger than evidence. :(
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

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

Re: Diagnosed while working abroad

Postby jts » Mon Oct 28, 2019 4:52 am

Thanks everyone for your responses. This will be my last week of pCR. Thursday is a holiday, so it's actually only 4 trips to the Rad clinic, but I have to keep taking the Xeloda through Friday.

I know I won't feel better immediately. I already get weekends off from radiation, and Sunday is usually my worst day. But I'm hoping that without the Xeloda and radiation I'll start feeling a little more normal within the week.

Two weeks after the end of pCR we've got a flight to the US to visit family. That will be nice, but in my current state, that flight will be rough.

Rock_Robster (and others), how quickly is "quickly" for feeling better?

One unexpected thing is that it's gotten progressively more painful to pee, and I always feel like I have to go, even when I don't. Also the skin on my bits&pieces got noticeably dark and sensitive. I've started wearing two pairs of underwear because the tiniest bit of chafing against my pants hurts.
Male 42
Most likely stage III, RC
DX starting 14.08.2019
Pooping blood, urgent care, colonoscopy, biopsy, CT, MRI, next step TBD
6 cm long tumor, 5cm above anocutaneous line
At least one lymph node likely
Tumor may touch seminal vesicles
23.Sept - 25.Oct Chemo-radiation, Capecitabine
Mid-December Surgery

Rock_Robster
Posts: 375
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Diagnosed while working abroad

Postby Rock_Robster » Mon Oct 28, 2019 6:12 am

jts wrote:Rock_Robster (and others), how quickly is "quickly" for feeling better?

One unexpected thing is that it's gotten progressively more painful to pee, and I always feel like I have to go, even when I don't. Also the skin on my bits&pieces got noticeably dark and sensitive. I've started wearing two pairs of underwear because the tiniest bit of chafing against my pants hurts.

Well done jts - almost there.

For me, the first week after finishing felt pretty much like a treatment week (minus the Xeloda). The second week after began to improve significantly, such I that felt pretty normal by the end of it - except a bit fatigued still. I flew about 3-4 weeks after and I don’t recall having any symptoms at all except I got tired standing/walking around the airport.

I also had the pain when peeing - we have an OTC oral powder here called Ural that’s taken for UTIs and it definitely helped me - it’s basically a urinary alkaliniser. Just don’t take it with the Xeloda as they can interfere.

Good luck for a swift recovery!
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; 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
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal


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