Just DX. looking for info.

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Just DX. looking for info.

Postby Marie25 » Thu Aug 22, 2019 12:01 pm

My husband was just diagnosed in late June. We made an appt at Mayo for the next week. He had more testing done there. We have also spoke to the surgeon about 2 weeks ago and now just waiting to get to the oncologists on 8/26 & 8/28 (because they had no availability till then) I am hoping he won't have to wait even longer to begin chemo/radiation. Hopefully we can start a day or two after that. The surgeon is recommending TNT, so we will see what the oncologist says. What should we expect as far as chemo for stage 3? Is it tolerable? Will it make him super prone to infections? We have a cruise planned for end of October and he is really looking forward to that so I hope we don't have to cancel. Any info helps as we are obviously new to this. Thank you!
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

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Joined: Fri Jul 26, 2019 5:13 pm

Re: Just DX. looking for info.

Postby annieliz » Thu Aug 22, 2019 2:54 pm

Hello, Marie,

Sorry to hear about your husband. I am also new to this, but my situation sounds similar, so I can tell you what my experience has been so far. My first oncologist visit was on 8/2. The plan is to do chemo (8 rounds of FOLFOX) followed by chemoradiation in the hopes of destroying the tumor without surgery. The 8 rounds take place over 4 months as they are spaced 2 weeks apart. So, every other weekend I will be hooked up to a small portable pump for 48 hours followed by 2 weeks off. I just completed my first round and it wasn't so bad. Felt weird during the time the pump was connected - basically had no appetite - but I didn't really experience any side effects - no cold sensitivity, no tingling hands and feet, no nausea - fingers crossed that the next one goes as smoothly. I go in on Fridays to get infused, and then I disconnect myself on Sundays. My oncologist said that there is a risk of infection, but he indicated that it wasn't common. Hand washing is important, and when I go to my fitness club I always wipe down the machines with wet wipes before and after I use them. As far as the cruise goes, I think that's something the oncologist should advise you on as I have never been on one and you don't know yet what your infusion schedule will be.

Hope this helps a little. Again, this is all new to me as well but I am sure you will hear from others who have more complete information.

All the best to you and your husband.

66 Female
7/15/19 Colonoscopy
7/26/19 DX: Rectal Adenocarcinoma
CEA 8/8/19-1.9, 12/6/19-2.3, 2/28/20-1.7
8/16/19 - 11/23/19 FOLFOX - 8 rounds
10/9 flex sig ~30% shrinkage 11/27/19-a bit more shrinkage
Neulasta 9/29/19, 10/27/19, 11/24/19
25 days Xeloda and radiation 12/17/2019 - 1/22/20
Robotic LAR 4/14/20 - clear margins - 0/15 nodes
Temp ileostomy

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Re: Just DX. looking for info.

Postby Punky44 » Thu Aug 22, 2019 10:52 pm

My mom has her chemo locally but was also advised to do TNT through Mayo, where she ultimately had her radiation, surgery and reversal. Folfox affects everyone differently but in my mom’s case, she really experienced no effects except the cold sensitivity and hair thinning and fatigue (toward the end).

You’ll definitely want to get your doctor’s ok before cruising—it may work out with your chemo schedule but you do want to be careful because the patient’s system will be immunocompromised so extra vigilant hygiene (especially on places like cruise ships) would be my top concern.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3
Latest update: 6/20–Clear CT, normal CEA

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Re: Just DX. looking for info.

Postby Jacques » Sat Aug 24, 2019 11:15 am

Marie25 wrote:... We have a cruise planned for end of October and he is really looking forward to that so I hope we don't have to cancel. Any info helps as we are obviously new to this. Thank you!

My advice would be to cancel the cruise now while there is still time to get a full or partial refund of your deposit. The longer you wait the more difficult it becomes to get any refund of deposit. (Read the fine print on your cruise documentation to see what the conditions are.)

My main concern would be the separation from your medical team at a critical time during Total Neo-adjuvant Therapy. The ship's clinic will likely not be able to provide any kind of regular or emergency support for a patient undergoing TNT treatment.

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Re: Just DX. looking for info.

Postby bitchslapped » Sat Aug 24, 2019 1:59 pm

Agree w/Jaques. Your best source for advice is your doctor. My own personal opinion is that cruise ships are cesspools of bacteria in a confined area. You cannot control the cleanliness of buffets, food prep, staff & a ton of people.
If the cruise is that important to your DH & postponing the cruise not an option, you might ask the doctors if better to delay treatment until after the cruise. Don't forget that treatment kills both good & cancerous cells, therefore compromises the immune system, not to mention side affects. It may not make that much difference to wait & your DH would have a much better vacation experience.

Best Wishes
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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Re: Just DX. looking for info.

Postby Marie25 » Mon Aug 26, 2019 5:59 pm

Thanks everyone. So far the suregon and radiation oncologist said the cruise should be fine but to also check with the chemo onc.!
Supporter to my husband
Rectal adenocarcinoma
Folfox 8/2019
Short Course Radiation January 2020
Surgery January 2020
T3 N0 stage 2A
0/42 lymph nodes

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Joined: Tue Aug 07, 2018 8:19 am

Re: Just DX. looking for info.

Postby Kbelo » Tue Aug 27, 2019 10:03 am

The chemo I had for Stage 3 (FOLFOX + Irenotecan) completely wiped out my white blood cells. I needed neulasta shots after each chemo session just to get my counts back up to a level where the next round of chemo could go ahead as planned. If you are reluctant to cancel your cruise I would be requesting WBC tests often to see how his cells are holding up. I feel like it's a huge risk. You read about cruise ship passengers all coming down with Norovirus or other nasty bugs. With a compromised immune system this pesky virus could be so, so much worse. Same for a cold or flu. Being out to sea if this were to happen...could be very bad.

Best of luck to you and your husband in the days and months ahead.
Stage 3B CC - diagnosed at 40
Bowel resection May 2018
28 nodes removed 1 with cancer traces
FOLFIRINOX started July 2018 for 6 months, finished Jan 2019.
1/19 - CT Scan shows NED
2/19 - CT Scan shows NED
5/19 - CT Scan shows NED
8/19 - CT scan + MRI show NED

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Re: Just DX. looking for info.

Postby NHMike » Tue Aug 27, 2019 12:22 pm

My oncologist told me not to get sick when I was on chemo. I worked through it by going to the office very early in the morning, working for a few hours and then working from home the rest of the day. It was during the summer so not cold/flu season.
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
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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Re: Just DX. looking for info.

Postby Jack&KatiesMommy » Tue Aug 27, 2019 2:50 pm

I went on a Disney Cruise 4 months into my chemotherapy...I didn't have any issues...and my oncologist never suggested that I couldn't or shouldn't go or otherwise live my life. (I had little kids (4 & 8 years old and if they aren't a cesspool of germs...not sure what is.) :)

Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

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