Did you travel during treatment?

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ginabeewell
Posts: 294
Joined: Wed Oct 24, 2018 10:30 am

Did you travel during treatment?

Postby ginabeewell » Fri Nov 09, 2018 12:42 pm

Several months ago, my husband and I booked a three day trip to Hong Kong from Chicago, for right after Thanksgiving.

I'll get my fourth round of FOLFOX + Vectibix on Monday. So this trip would hit on my "best" days of my cycle, and the impact to chemo would be pushing it back two days for round five.

I'm on Neulasta so my WBC has been good.

We are waiting for systemwide upgrades to clear; AA is saying that's likely, and that would make a big difference in whether or not we opt to go - just because I would feel better in a flat bed and with easy bathroom access! We can cancel up until a day before the trip, but cancelling will cost us $1000 because we bought non-refundable tickets.

Obviously going to run this by my oncologist to get her thoughts but would appreciate additional perspective.

Last year we did three days in Dubai and have so many awesome memories from that trip. Part of me thinks, "Well, what is this is the best I'm going to feel?" I don't think it's likely we would go another time if we cancel this trip.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Did you travel during treatment?

Postby cbsmith » Fri Nov 09, 2018 2:16 pm

The big thing is probably the lack of travel insurance to cover any issues relating to the cancer when you are away. As long as you are prepared for that risk and the onc says you re okay to travel it would be fine.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

KimT
Posts: 668
Joined: Sat Feb 20, 2010 8:53 pm

Re: Did you travel during treatment?

Postby KimT » Fri Nov 09, 2018 2:51 pm

Go for it! I traveled from Ohio to Thailand 4 weeks after surgery.

I’ve been to Hong Kong several times. I loved going there when we lived in Thailand. It’s a good mix of Asian and western influences.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: Did you travel during treatment?

Postby cartech78 » Fri Nov 09, 2018 6:19 pm

I think you should go! If you feel well enough you should go.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

NHMike
Posts: 2198
Joined: Fri Jul 21, 2017 3:43 am

Re: Did you travel during treatment?

Postby NHMike » Fri Nov 09, 2018 11:36 pm

We took AMtrak from Boston to DC and spent four days there between XELOX cycles. It was actually really rough because the temperatures where in the single digits and the Oxaliplatin effects were still being felt. If you have a bag, that's the main issue. Would there be any issues on the plane?
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

Mercy110
Posts: 112
Joined: Wed Aug 16, 2017 12:13 am

Re: Did you travel during treatment?

Postby Mercy110 » Fri Nov 09, 2018 11:53 pm

Welcome to HK!
I think this is a good choice. My family traveled to Japan last year during my mum’s treatment, Folfox with Avastin. And with lots of good memories!
Enjoy your trip!
Mum age 56, NRAS-mutate Q61R
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda No Radio. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: Increasing CEA. Wait and see. CEA:178
Now: Irinotecan+Zaltrip+TS-1



WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Did you travel during treatment?

Postby cbsmith » Sat Nov 10, 2018 7:41 am

NHMike wrote:We took AMtrak from Boston to DC and spent four days there between XELOX cycles. It was actually really rough because the temperatures where in the single digits and the Oxaliplatin effects were still being felt. If you have a bag, that's the main issue. Would there be any issues on the plane?


I’ve flown with ileostomy a number of times now and had no issues at all. An osteomyelitis shouldn’t prevent someone from flying.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

User avatar
ginabeewell
Posts: 294
Joined: Wed Oct 24, 2018 10:30 am

Re: Did you travel during treatment?

Postby ginabeewell » Sat Nov 10, 2018 1:03 pm

I don't have a bag so no issues there. I think my main concern is dealing with nausea and/or diarrhea on a long flight. But I think I can control that if I stay ahead of it with Zofran and Imodium.

Also a tiny bit concerned about jet lag / dehydration on top of everything else. I feel "good" right now, but good is highly relative!

Even so I think we are leaning toward trying to go.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: Did you travel during treatment?

Postby cartech78 » Sat Nov 10, 2018 5:00 pm

Im glad your leaning torwards going. I meant to ask you how your chemo was going. MSK changed mine from capox to Folfox. They are now telling my doctors here in Illinois what to do to proceed. I have to start chemo Monday. Not looking forward to it TBH. Do you find your side effects easy to control with the other medications they give you?
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

User avatar
ginabeewell
Posts: 294
Joined: Wed Oct 24, 2018 10:30 am

Re: Did you travel during treatment?

Postby ginabeewell » Sat Nov 10, 2018 5:42 pm

Cartech, I'll be doing chemo Monday, too. If you end up switching to NW, maybe I'll see you in the infusion room (which incidentally has a nice view of the lake if you wind up at Arkes with Dr Stein instead of Galter where the rest of oncology is).

I have been ok on chemo but I'm not sure I would describe the side effects as easy to control. My first round was pretty smooth, mostly fatigue and one day of diarrhea which a single dose of Imodium knocked out. My neuropathy was minor, and the acupuncturist at Osher Center has been treating my fingertips with laser so thus far anything I've been experiencing has been gone mid-cycle.

With later rounds, I noticed I've had to get more proactive treating side effects - a single dose isn't enough of anti-nausea or Imodium, I need to be on a schedule.

Appetite has been a big problem. I started out strong with a very strict diet and figured out quickly there was no way to maintain it AND keep my weight on (I'm 5'7" and down to about 105 lbs). So I've had to adjust my approach there. My taste hasn't changed too much but some of the things I used to love - like coffee and wine - have lost all appeal.

Doesn't look like you're on an EGFR inhibitor, but once that is in the mix, prepare for a nasty rash. Most of my time and energy the past few weeks has been focused on trying to keep that at bay!
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections

cartech78
Posts: 65
Joined: Thu Oct 25, 2018 6:22 pm

Re: Did you travel during treatment?

Postby cartech78 » Sat Nov 10, 2018 6:09 pm

Sorry to hear about the rash! Im not on Erbitux or the other one yet because MSK is trying to be able to have me ready for surgery quickly if they can. I just bought a heated jacket and gloves on Amazon to try and help with cold side effects. I did hear that hand foot and mouth rashes were common with those EGRF inhibitors. Oh great! If we didn’t have enough to worry about. If I end up with that pump im going to have everything switched to NorthWestern and MSK so I don’t have three different places to go and I can get there easily from Skokie. I will be sure to request that ONC you mentioned if/when the time comes.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon T3N1bM1a
Histologic grade-G2
7 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2018 also found 20 more small tumors on liver scans missed
7/2/2018 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
8/5/2018- Pet scan- Dr.Kemeny and Dr.Kingham think ive had complete response from pump. Want me to do a little more chemo to be safe.

PetesStupidBowel
Posts: 3
Joined: Mon Jul 30, 2018 5:45 am

Re: Did you travel during treatment?

Postby PetesStupidBowel » Sun Nov 11, 2018 4:02 am

My wife an I had a week long trip during the middle of chemo. Initially it was going to be during my 'good' week, but one round got delayed due to bloods, but my onc was happy to delay chemo for a week so that we could have a break. Didn't have any issues with travelling other than a SCUBA tour company not wanting to take me because of my port (I didn't get a note from my onc saying he was happy for me to do whatever). In the end, the week away did us good :)

User avatar
Amy Mabe
Posts: 4
Joined: Wed Nov 07, 2018 12:25 pm

Re: Did you travel during treatment?

Postby Amy Mabe » Thu Nov 15, 2018 5:18 pm

My husband and I are new to all of this. He will probably be starting FOLFOX the week after Thanksgiving- will see oncologist Tuesday for a solid plan. When you all say "my good week" where does that fall in the treatment schedule? It looks like he will get hooked up on Fridays and I will disconnect him on Sundays. He's wanting to go back to work after starting chemo, but we're wondering when the best and worst days following chemo will be.

cbsmith
Posts: 87
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Did you travel during treatment?

Postby cbsmith » Thu Nov 15, 2018 8:40 pm

Amy Mabe wrote:My husband and I are new to all of this. He will probably be starting FOLFOX the week after Thanksgiving- will see oncologist Tuesday for a solid plan. When you all say "my good week" where does that fall in the treatment schedule? It looks like he will get hooked up on Fridays and I will disconnect him on Sundays. He's wanting to go back to work after starting chemo, but we're wondering when the best and worst days following chemo will be.


Typically the first week of the two week cycle is the worst, the week you have the chemo treatment. Usually the 5fu disconnect day and the couple days after are the worst.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC, KRAS mutant, MSS
09/14-04/15 - 12 rounds of FOLFOX
07/15-CT showed para-aortic lymph node, onc thght inflammation
10/15-DX Stage IV, CT lymph node tripled in size, 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin
11/17 - no chemo since. Lung growth minimal, lymph node is stable

User avatar
ginabeewell
Posts: 294
Joined: Wed Oct 24, 2018 10:30 am

Re: Did you travel during treatment?

Postby ginabeewell » Thu Nov 15, 2018 9:57 pm

For me, days 3-4 are the most fatigued. But I had a rough time with nausea, vomiting and diarrhea hitting me days 7-8 as well. My doc told me to get more proactive on the Zofran, Compazine and Lomotil, which seems to have helped this cycle. I think it's a little different for everyone though.
45 year old mom of twins (7) and lucky stepmom of 13 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 Routine scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 Surgery: HAI pump placement / colon resection
4/8/19 Resume chemo (#9-12) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/18: 1st of 2 liver resections


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