Mop up chemo experiences

Please feel free to read, share your thoughts, your stories and connect with others!
Eleda
Posts: 105
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Sun May 20, 2018 2:21 pm

I take CBD/THC to sleep and as an anti carcinogenic from the beginning of my cancer story,,,it's home made with about 70%thc in a 5ml syringe, made by a friend of mine in the UK and posted ( illigally) to me, I take about the size of a grain of rice into an empty tablet capsule ( AMAZON) and it's lights out for me for 14 hours,,,
Have to watch the munchies, lol I'm fat enough lol
So I take it when I've no kids n the house in bed or an hour or 2 before
Glad u found something to help
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th colo for intermittent rectal bleeding over the Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV
JAN 3RD started 1650mg Zelda 2xday, concurrent with 28 radiation

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Sun May 20, 2018 8:34 pm

Our county legalized medical growing with a permit. New board banned it two years later for the reasons you state. Since the THC levels are next to nothing, I am not going to worry. I prefer chocolate to alcohol and drugs. On the positive side, I was able to get in10000 steps today, eat normal meal and not get sick.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Indonesian Archipelago

Re: Mop up chemo experiences

Postby O Stoma Mia » Mon May 21, 2018 12:14 am

Caat55 wrote:... I am going NYC on the 29th, would like to have some quality time with our kids.

If you are going to be traveling by air to NYC, I think it would be a good idea to get a letter from your doctor stating that you have a medical condition that may require special attention during your trip.

You can use the letter to show security at the airport if they have any questions about your belly-wrap or stoma bag, and you can use it during the flight to show the airline cabin staff if you need to go to the toilet when the "Fasten Seatbelt" sign is on.

If you can't get a letter from your doctor right now, you can print a generic letter or card from one of the support sites on the Internet, e.g.:

https://www.ostomy.org/wp-content/uploads/2017/07/travelcard_FINAL.pdf

NOTE: While in the plane, try to avoid foods and beverages known to produce gas. This is to avoid having a stoma-bag blow-out at 30,000 ft.
Last edited by O Stoma Mia on Mon May 21, 2018 10:32 am, edited 1 time in total.

NHMike
Posts: 1354
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Mon May 21, 2018 5:45 am

Caat55 wrote:Our county legalized medical growing with a permit. New board banned it two years later for the reasons you state. Since the THC levels are next to nothing, I am not going to worry. I prefer chocolate to alcohol and drugs. On the positive side, I was able to get in10000 steps today, eat normal meal and not get sick.


It's legal in my state but there's still a lot of resistance to it. They were going to put in a dispensary to a former bank building because it has a vault but there's a religious college across the street from it and the objected. 10K steps is a great daily goal.
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon May 21, 2018 8:44 pm

Thank you. I was wondering about that. I got something from one the the pouch supplies when they sent the samples. The blow out is my nightmare, had one here at home and that was bad enough. I will speak to airlines prior to flight.

S
O Stoma Mia wrote:
Caat55 wrote:... I am going NYC on the 29th, would like to have some quality time with our kids.

If you are going to be traveling by air to NYC, I think it would be a good idea to get a letter from your doctor stating that you have a medical condition that may require special attention during your trip.

You can use the letter to show security at the airport if they have any questions about your belly-wrap or stoma bag, and you can use it during the flight to show the airline cabin staff if you need to go to the toilet when the "Fasten Seatbelt" sign is on.

If you can't get a letter from your doctor right now, you can print a generic letter or card from one of the support sites on the Internet, e.g.:

https://www.ostomy.org/wp-content/uploads/2017/07/travelcard_FINAL.pdf

NOTE: While in the plane, try to avoid foods and beverages known to produce gas. This is to avoid having a stoma-bag blow-out at 30,000 ft.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Mon May 21, 2018 9:00 pm

Elena,
Sleeping is my super power. I didn't take anything today as I had to ork and didn't want to risk even the tiniest bit of a buzz. I am grateful for about 6 hours of sleep, the bag gets heavy or puffy and I need to get up to empty it.

I am going to take it with me on vacation as I don't want to feel sick, ruin our trip. May get a few extra gummies to be safe as this will be fourth dose of oxi.

S

Eleda wrote:I take CBD/THC to sleep and as an anti carcinogenic from the beginning of my cancer story,,,it's home made with about 70%thc in a 5ml syringe, made by a friend of mine in the UK and posted ( illigally) to me, I take about the size of a grain of rice into an empty tablet capsule ( AMAZON) and it's lights out for me for 14 hours,,,
Have to watch the munchies, lol I'm fat enough lol
So I take it when I've no kids n the house in bed or an hour or 2 before
Glad u found something to help
Adele X
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Eleda
Posts: 105
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Mop up chemo experiences

Postby Eleda » Mon May 21, 2018 11:40 pm

Susan ur doing great so far, so don't knock itself, as I said, new proticol is only 3months as apose to 6 so anything after. 3 is a bonus I would think without the permanent side effects
Diffiniatly bring it with u on holiday,,,, u need to enjoy the break
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th colo for intermittent rectal bleeding over the Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV
JAN 3RD started 1650mg Zelda 2xday, concurrent with 28 radiation

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue May 22, 2018 12:38 am

margiej wrote:This is my first time posting..I have been lurking on the site for the last couple of months and have learned so much. When I was diagnosed over two years ago, I was too overwhelmed to research what I was going through. I was just on autopilot and putting my faith in my surgeon and oncologist. Probably not the best approach but it has turned out well for me so far, fingers crossed and knock on wood. I might have had an easier time if I would have read all the experiences others have gone through and all the warm advice and best wishes. My experiences with Oxaliplatin and Xeloda were very similar to what others have been posting. I resisted a port and my first Oxy infusion was in the vein on the top of my hand. My hand and my arm were so, so painful, I had a hard time sleeping the first two nights. The rest of my infusions were inserted higher up on my arm and it was much less painful. Oxy causes the extreme sensitivity to cold and it's not a joke. My daughter-in-law got me a cold bottle of water partway through my first infusion and it was a big mistake..the prickling and pain in my mouth and throat--yowza. After that I always drank warm beverages during my infusions. I was also extremely nauseous. I don't know if it was from the Oxy or Xeloda or both. The compazin didn't help at all. I got Zofran about 3 days in and it helped a lot. Also, Emend was added as part of my infusion after the first time and I always felt pretty good for about three days after my infusions after that. The cold sensitivity was pretty bad for about a week after the Oxy infusion---brushed teeth with warm water, drank everything at room temperature or warmer. I wore oven mitts to take things out of the refrigerator. You just learn what you can and can't do. My throat really bothered me ...the first night I thought I had swallowed a chicken bone or something...didn't realize that it was a chemo side effect!
In conclusion...chemo sucks but you just get through as much as you can as best you can.
Hugs and peace to all.
Margie


I am trying to make myself go through another round, it's remembering it all and being afraid that each time it is worse. I feel like a baby, a puff, I know everyone must struggle with this. The alternative to oxilaplatin is what? I dread Thursday and every day of the next six weeks.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Tue May 22, 2018 12:40 am

Eleda wrote:Susan ur doing great so far, so don't knock itself, as I said, new proticol is only 3months as apose to 6 so anything after. 3 is a bonus I would think without the permanent side effects
Diffiniatly bring it with u on holiday,,,, u need to enjoy the break
Adele X

Thank you Adele. I am feeling so tired, just want to be on the other side of this.


Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Indonesian Archipelago

Re: Air travel tips

Postby O Stoma Mia » Tue May 22, 2018 1:03 pm

If you are going to be traveling by air on the 29th, here are a few tips:
  • Pre-boarding checklist
    1. Log in to SeatGuru.com with your flight number and departure date to download the seat plan for your specific flight. This will show you where the nearest toilets are with respect to your assigned seat. Try asking your airline for an aisle seat close to the toilet, if at all possible
    2. Buy a roll of micropore surgical tape and a small pack of wet-wipes to carry with you in your handbag
    3. Have someone else carry your suitcase to the baggage drop. Don't try lifting it yourself.
    4. Make sure that all of your critical medical supplies are in your handbag and not in the roll-on bag or in your checked luggage.
    5. Make one last stop at the WC to empty your stoma-pouch before boarding.
  • Post-boarding checklist
    1. Have someone else lift your roll-on bag into the overhead compartment. If you try doing it yourself you might weaken your wafer seal.
    2. Talk to the cabin attendant before take-off to explain your concerns.
    3. Before take-off, check out the layout of the nearest toilet. Be sure to note where the toilet paper, paper towels and tissues are located, as well as where the toilet-flush button is.
    4. Avoid eating or drinking anything that might produce gas.
    5. When your seat-belt is fastened, try not to fasten it too tightly.
    6. Try not to go to sleep with your seat-belt pressed against your stoma bag.
    7. If your stoma bag needs emptying, empty it earlier rather than at the last minute.
    8. If you have a stoma-bag leak while in the cabin, use the wet-wipes to wipe it clean, then patch up the leak with lots of micropore tape.
    9. For disembarking, have someone else retrieve your roll-on bag from the overhead compartment. Don't try doing it yourself.
    10 At baggage claim, have someone else lift your suitcase off the conveyor belt.

User avatar
Shana
Posts: 371
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: Mop up chemo experiences

Postby Shana » Tue May 22, 2018 3:45 pm

Great travel tips, OSM!

For anyone who has future travel plans I would also recommend applying for TSA precheck. The cost is reasonable and valid for 5 years, my credit card reimbursed the cost to me. It made security a breeze, no scanner... no additional questions or screening... just the metal detector walk through and much shorter lines.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Indonesian Archipelago

Re: Mop up chemo experiences

Postby O Stoma Mia » Wed May 23, 2018 3:35 am

Shana wrote:... For anyone who has future travel plans I would also recommend applying for TSA precheck. The cost is reasonable and valid for 5 years, my credit card reimbursed the cost to me. It made security a breeze, no scanner... no additional questions or screening... just the metal detector walk through and much shorter lines.

Thank you, Shana, for the tip. This is a great idea for US-based passengers who fly on one of the airlines that participate in this program.

Last time I went to the US, I did not qualify for TSA pre-check since I was not flying on one of the participating airlines. See list below:

https://www.johnnyjet.com/all-the-airlines-that-accept-tsa-precheck-global-entry/

Caat55
Posts: 392
Joined: Sat Dec 23, 2017 6:01 pm

Re: Mop up chemo experiences

Postby Caat55 » Wed May 23, 2018 10:10 pm

The oncologist offered an 80% dose so when I called today to say yes, that's what I wanted as the oxi side effects had not gone away between doses this time , he instead cancelled my appt for a week. This doesn't work as we are going to be gone. WhenI asked to be back on schedule tomorrow, they had already given away my slot. I had hoped to be done with this by Independence Day but now it won't happen. I was looking forward to a little summer break before I have to go back to school. Really bummed. I guess we just enjoy the trip to New York without chemo.
Good news , bad news who knows?

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
O Stoma Mia
Posts: 1322
Joined: Sat Jun 22, 2013 6:29 am
Location: Indonesian Archipelago

Re: Mop up chemo experiences

Postby O Stoma Mia » Wed May 23, 2018 11:11 pm

Caat55 wrote:...he instead cancelled my appt for a week. This doesn't work as we are going to be gone....

I'm sorry to hear about this new development.

If a one-week postponement is not possible, then when will you actually be able to resume your schedule, and how long will you have to be off Xeloda? Two weeks from now? Do you have a firm appointment for your next round?

NHMike
Posts: 1354
Joined: Fri Jul 21, 2017 3:43 am

Re: Mop up chemo experiences

Postby NHMike » Thu May 24, 2018 7:37 am

Caat55 wrote:The oncologist offered an 80% dose so when I called today to say yes, that's what I wanted as the oxi side effects had not gone away between doses this time , he instead cancelled my appt for a week. This doesn't work as we are going to be gone. WhenI asked to be back on schedule tomorrow, they had already given away my slot. I had hoped to be done with this by Independence Day but now it won't happen. I was looking forward to a little summer break before I have to go back to school. Really bummed. I guess we just enjoy the trip to New York without chemo.
Good news , bad news who knows?

Susan


I did this twice, but, in each case, I was in the doctor's office talking with the doctor and we made a joint decision. Could you get a day sometime next week that isn't on your regular day?
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Majestic-12 [Bot], RonaldHaire and 43 guests