Starting Treatment soon-have some ?

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love3
Posts: 12
Joined: Tue Aug 01, 2017 1:06 pm

Starting Treatment soon-have some ?

Postby love3 » Wed Aug 02, 2017 10:54 am

Hi Everyone. I have been reading valuable information on here for about a month but this is my first post. I found out Monday that I am going to be receiving 3 months adjuvant chemo starting sometime this month. I am diagnosed as IIIa (or b) with a complete tumor resection but 3/32 lymph nodes positive. I was offered either Folfox (6 IV treatments) or Xelox (4 IV treatments). I think I am going to do the Xelox although hand and foot syndrome scare me! I'm hoping with just the 4 treatments it won't be so bad. I have decided to do a port and still haven't heard when I will be getting that put in. It seems like this is going so slow as it is so long between each step. It will be 6 weeks since surgery on this Friday. I'm anxious to find out my schedule as I have a niece's wedding that I play a small part in as Godmother in September and my daughter gets married in October. I'm wondering if I have treatment the Tuesday before my niece's Saturday wedding if I will feel OK. I would like to plan it so that I am completely off the week before my daughter's wedding. Can anyone offer any advice or input?
Thank you.
51 female
4/2017 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/2017 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy
6/2017 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
11/2017 -Chemo complete-4 rounds of xelox. Full oxi each round, last 2 rounds of xeloda reduced
11/2017-Port Removed
12/2017-CT Scan clear, CEA 1.8 NED

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: Starting Treatment soon-have some ?

Postby Basil » Wed Aug 02, 2017 1:19 pm

I was on FOLFOX so your routine might be different but most people feel the worst around days 3-5 after infusion and are at their "best" the last days before the next cycle. I would set a schedule where the wedding is on an off" weekend and you are a few days from the next cycle. I'd probably start on a Tuesday so you have the remainder of that week and all the next week or l week to recover. BTW, I suggested Tuesday over Monday just so you won't be worrying too much about cancer if there are festivities on Sunday.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear

Brearmstrong
Posts: 95
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Starting Treatment soon-have some ?

Postby Brearmstrong » Wed Aug 02, 2017 1:37 pm

I also get my treatments starting on Tuesday with pump off on Thursdays. The first few treatments I was able to work Wednesdays and Thursdays and then felt horrible on Fridays and Saturdays. Now that the treatments are racking up (I have 9th one next Tuesday) I start feeling tired and terrible on Wednesdays and Thursdays but now surprisingly, Saturdays are not so bad and by Sunday I feel normal. The eating part is the hard part. I don't get my taste buds back or whatever horrible thing goes on in our mouths until like Wednesday of the next week. Good luck and try to have fun at the wedding no matter what!
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2
Oct 2017 clean CT
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda continues
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20- confirmed recurrence on Rt ovary 3.5 cm CEA 4.0 waiting on plan

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Starting Treatment soon-have some ?

Postby Volfan » Wed Aug 02, 2017 1:46 pm

My experience with the folfox is Monday chemo, Tuesday tired as the day goes on. Wednesday pump disconnect but feel pretty good. Thursday during day ok start dragging that evening and usually stomach issues start. Friday kind of slow moving and stomach issues continue. Saturday start to feel decent and stomach issues are getting better. Usually feel myself by Sunday.
I am able to work Tuesday half day and all day the rest of the week most of the time on the week I have chemo.
My off week I'm able to work 40 hours 10 hour days.
One thing to watchout for is the random day of fatigue. It just shows up out of the blue and usually that day I nap off and on that day.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

love3
Posts: 12
Joined: Tue Aug 01, 2017 1:06 pm

Re: Starting Treatment soon-have some ?

Postby love3 » Wed Aug 02, 2017 3:45 pm

Thank you for the responses. I wonder if Folfox symptoms timeframe is the same as Xelox. I was hoping for 2 Blah days right after IV and then feeling better after that. My goal is to go in on Tuesdays. I'm thinking I may find that out tomorrow. Still no call from the hospital as to when I can schedule getting the port put in yet. These things take way too long!
51 female
4/2017 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/2017 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy
6/2017 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
11/2017 -Chemo complete-4 rounds of xelox. Full oxi each round, last 2 rounds of xeloda reduced
11/2017-Port Removed
12/2017-CT Scan clear, CEA 1.8 NED

love3
Posts: 12
Joined: Tue Aug 01, 2017 1:06 pm

Re: Starting Treatment soon-have some ?

Postby love3 » Mon Aug 14, 2017 9:47 am

Update-I had the port put in this past Thursday. That actually was a bigger deal than I thought it was going to be. Glad it's in and everything looks good (although very bruised). I start my first round of Xelox on Wednesday. Praying for minimum side effects. Does the cold sensitivity (ice water, frig, freezer, etc.) usually start right away? How long does it last?
51 female
4/2017 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/2017 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy
6/2017 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
11/2017 -Chemo complete-4 rounds of xelox. Full oxi each round, last 2 rounds of xeloda reduced
11/2017-Port Removed
12/2017-CT Scan clear, CEA 1.8 NED

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Starting Treatment soon-have some ?

Postby Volfan » Mon Aug 14, 2017 1:09 pm

When I get my oxi the nurses always put a card out for me not to have anything cold when they bring lunch around during treatment.
The cold sensitivity at first lasted about 5-7 days. Seems to be lasting longer with the more treatments I get.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

User avatar
Robino1
Posts: 463
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Starting Treatment soon-have some ?

Postby Robino1 » Mon Aug 14, 2017 6:26 pm

The cold sensitivity, for me, lasted different times. They all pretty much started right away. The drinking cold things lasted only a few days one time, a little longer another time. Never for more than a week and a few times only 5 days.

Handling cold things really depended on how cold things were. If frozen containers, that for me is constant at this point. The severity is what modulates. In other words, after a week out, I can quickly pull something out of the freezer and set it down with no symptoms. I just can't hold it for any length of time.

Unfortunately, there really isn't a pattern that it follows 100%.

Most symptoms are all gone by 1 week, except that one noted above. I know that it side effects going away may take longer as the chemo starts to build up in my system. That's why I try to get a lot of liquids in me during that chemo week. So far it's working. :)

Just keep in mind, all these side effects are temporary. They will go away after you're done and in remission or NEDville. The one that most, and I count me in the most category, have concern with is neuropathy. That one can linger long after or even permanently.
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Starting Treatment soon-have some ?

Postby Tdubz » Mon Aug 14, 2017 10:44 pm

The first couple of treatments seemed ok. Side effects only lasted maybe 3 days. I'm now on number 8 and from starting at round 5, cold sensitivity would last until day 11. i don't even care about my hands not being able to touch cold things, my wife helps with that. the worst part is only being able to drink cold drinks for 3 days every 2 weeks when it's over 100 degrees outside every day.

My worst days would be days 2 through 4, then it was 2 through 5. When I say worst days, I mean nauseous, tired, weak, etc. The other side effects, like cold sensitivity are there from day one as well and last longer, but they don't really make you feel bad.this round I started feeling bad a few hours after infusion. Hopefully that means I'll feel better a day earlier but I ddoubt it lol.

Anyways, this is my experience and everyone reacts differently. I know a few people who's only side effect was being tired. Others have had it much worse. I am on folfox so I'm not sure how the side effects differ from xelox but I heard folfox is a bit worse (could be wrong about that). Good luck in your journey and keep us updated with how it goes

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Starting Treatment soon-have some ?

Postby orlar » Mon Aug 14, 2017 11:42 pm

I'm only in the middle of round 3 of Folfox, but noticed the cold sensitivity during the day of my first infusion, which was followed up by first bite shortly after.

At this point day 1-2 are still functional days, but sometime in day 3(after the pump is dc) through day 5 tend to be my worst for fatigue, nausea, and the tingling fingers. I don't do too much on those days (I can't thank my wife enough for all she does even tho she has her own health issues to fight!). I try to stay on top of the nausea by taking the meds on a regular schedule til the morning of day 6. Day 6 is usually better with day 7 back to normal length of walks. I always try to plan something for the week off to recoup and enjoy some things.

As I've read before, everyone reacts differently. Just trying to stay positive and enjoy the little things!
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

love3
Posts: 12
Joined: Tue Aug 01, 2017 1:06 pm

Re: Starting Treatment soon-have some ?

Postby love3 » Tue Aug 15, 2017 8:22 am

I appreciate all the feedback. I'm going to try and go in with a positive attitude. Hopefully I can manage that. I've cleared my schedule from Wednesday until Monday so I can rest in case it's needed. I hate not knowing how I'm going to react. I've always tried to avoid strong drugs-even avoided the heavy duty pain killers after surgery. Now here I am having to put chemo into my body. So glad I found this site and all the nice people that care enough to write about their experiences. It's taken some of the unknown out of the equation. I'll report back.
51 female
4/2017 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/2017 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy
6/2017 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
11/2017 -Chemo complete-4 rounds of xelox. Full oxi each round, last 2 rounds of xeloda reduced
11/2017-Port Removed
12/2017-CT Scan clear, CEA 1.8 NED

User avatar
ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Starting Treatment soon-have some ?

Postby ocstacy » Tue Aug 15, 2017 10:20 am

I am diagnosed as IIIa (or b) with a complete tumor resection but 3/32 lymph nodes positive. I was offered either Folfox (6 IV treatments) or Xelox (4 IV treatments).


My mother was diagnosed with 3A like you but doing the opposite (shrink first, than remove) Neoadjuvant therapy. Her diagnoses was Adenocarcinoma (low grade) with possible 1 lymph affected. She will finish her xeloda and radiation in two days, than surgery this Oct, Yay! :-) Best of luck to you !! <3
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

love3
Posts: 12
Joined: Tue Aug 01, 2017 1:06 pm

Re: Starting Treatment soon-have some ?

Postby love3 » Tue Aug 15, 2017 5:29 pm

]

My mother was diagnosed with 3A like you but doing the opposite (shrink first, than remove) Neoadjuvant therapy. Her diagnoses was Adenocarcinoma (low grade) with possible 1 lymph affected. She will finish her xeloda and radiation in two days, than surgery this Oct, Yay! :-) Best of luck to you !! <3[/quote]


They were able to remove the polyp through the colonoscopy so no radiation needed. It was truly thought to not be cancerous at that time. The resection was supposed to be precautionary and they gave me the option of not doing it. Glad I did because even the surgeon was surprised when the lymph nodes came back positive. The cancer had not gone through the colon wall and the report on the resected portion of the colon came back clean. Cancer can be so tricky. Glad I'm a doer and not a person that likes to wait and see.
Good luck to your mother. I thought the surgery was a piece of cake.......I'm sure your mother will do just fine.
51 female
4/2017 - Routine Colonoscopy-No symptoms
CEA before polyp removal 1.7, CT scans clear
5/2017 - Another Colonoscopy to remove a flat lesion type polyp that could not be removed during original colonoscopy
6/2017 - Colon Resection due to abnormal cells found on polyp. 3/32 lymph nodes positive for cancer
New Diagnosis - IIIa (or possibly b)
11/2017 -Chemo complete-4 rounds of xelox. Full oxi each round, last 2 rounds of xeloda reduced
11/2017-Port Removed
12/2017-CT Scan clear, CEA 1.8 NED


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