Chemotherapy Journey

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Rikimaroo
Posts: 98
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Sun Jan 21, 2018 9:10 pm

Thanks guys. Closing up feeling in throat worse feeling ever. I do the swishing. Cold temps making all my bottled water cold sucks and correct inhating drinking heated water. So my wife went and bought a bunch of different teas which have helped. Still it’s toigh. Hot cocoa, coffee, ginger tea, caramel sea salt tea, and many more.

Is anyone doing magic mouthwash does that help with the weird mouth feeling inside not dry just odd.

Also I have not eaten red meet since December 2016.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

User avatar
ANDRETEXAS
Posts: 564
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Chemotherapy Journey

Postby ANDRETEXAS » Sun Jan 21, 2018 11:00 pm

My life saver was room-tempearture Pellegrino.......especially when I wanted water (water began to taste bad) Hot tea, hot coffee, broth, soup, stew...anything that would keep my throat from closing. Hang in there !!
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy

ONE DAY AT A TIME !

NHMike
Posts: 1096
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy Journey

Postby NHMike » Mon Jan 22, 2018 5:19 am

Rikimaroo wrote:Thanks guys. Closing up feeling in throat worse feeling ever. I do the swishing. Cold temps making all my bottled water cold sucks and correct inhating drinking heated water. So my wife went and bought a bunch of different teas which have helped. Still it’s toigh. Hot cocoa, coffee, ginger tea, caramel sea salt tea, and many more.

Is anyone doing magic mouthwash does that help with the weird mouth feeling inside not dry just odd.

Also I have not eaten red meet since December 2016.


It's been a challenge for my wife as she may make something and I may not want to eat or or I just feel nauseous. She hands me a dish with a fork and I can't use the fork without gloves. I do get tired of hot drinks all the time but they work so I have to live with it. I might have a tiny bit of ice cream in my off week if I can handle it. I normally have it once or twice a year. Not being able to have yogurt, cottage cheese and other things is a pain.

I do feel better this morning.
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
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

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Robino1
Posts: 417
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Chemotherapy Journey

Postby Robino1 » Mon Jan 22, 2018 9:03 am

Rikimaroo wrote:Thanks guys. Closing up feeling in throat worse feeling ever. I do the swishing. Cold temps making all my bottled water cold sucks and correct inhating drinking heated water. So my wife went and bought a bunch of different teas which have helped. Still it’s toigh. Hot cocoa, coffee, ginger tea, caramel sea salt tea, and many more.

Is anyone doing magic mouthwash does that help with the weird mouth feeling inside not dry just odd.

Also I have not eaten red meet since December 2016.


I use the Magic Mouthwash. It takes about a week for all the crud to settle down. I get almost a week without mouth issues. As soon as I feel smoothness on the roof of my mouth, I stop using the Mouthwash.

Food just isn't very appealing during this time period. But I have found foods that I like that get past the yuck time. I have found one food that I used to love, I just can't eat anymore. No biggie.

I still eat red meat on occasion.
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.
12/8/17 Markedly decr ant peritoneal nodularity since 8/29/17 compat w/ marked posi respns to therapy
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
BRAF V600e

Rikimaroo
Posts: 98
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Mon Jan 22, 2018 4:28 pm

NHMike wrote:
Rikimaroo wrote:Thanks guys. Closing up feeling in throat worse feeling ever. I do the swishing. Cold temps making all my bottled water cold sucks and correct inhating drinking heated water. So my wife went and bought a bunch of different teas which have helped. Still it’s toigh. Hot cocoa, coffee, ginger tea, caramel sea salt tea, and many more.

Is anyone doing magic mouthwash does that help with the weird mouth feeling inside not dry just odd.

Also I have not eaten red meet since December 2016.


It's been a challenge for my wife as she may make something and I may not want to eat or or I just feel nauseous. She hands me a dish with a fork and I can't use the fork without gloves. I do get tired of hot drinks all the time but they work so I have to live with it. I might have a tiny bit of ice cream in my off week if I can handle it. I normally have it once or twice a year. Not being able to have yogurt, cottage cheese and other things is a pain.

I do feel better this morning.


I feel better today as well, and I try to have ice cream like maybe 10 days into my off days. Maybe take the girls (wife +2) to dairy queen or making a molten lava cake with my new Instant Pot Pressure cooker LOL....I am able to drink room temperature water today surprisingly but the lockup feeling comes if I drink nonstop.

Pooping is really tough right now since I am constipated and the pellet pooping really hurts. I don't even want to poop. I ate some strawberries to see if it will help.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

mozart13
Posts: 133
Joined: Fri Dec 09, 2016 7:38 pm
Location: Toronto

Re: Chemotherapy Journey

Postby mozart13 » Mon Jan 22, 2018 6:42 pm

Watermellon saved me from being dehydrated, there were nights , usually chemo week, my body was burning, I was literally swimming in my sweat, would get up and finish half watermellon in no time.
Dehydration could be the cause of constipation, as well as zofran, not sure if you are taking it for nausea, usually they would give it to me before chemo.
Sensitivity to cold was part of package, now is winter time, it is probablly harder.
Mouth care I did with baking soda, had no issuess, except when went for cleaning, the lady that did, said there was so much calcification, usually from mouth being alkaline, she was right on the money as baking soda makes you alkaline, she didnt know my history.
55 year at the time of diagnosis, male
Diagnosed with T1,T2 N0 M0 rectal cancer
Total neoadjuvant therapy or TNT (chemoradiation followed by systemic chemotherapy)
Negative since Feb. '17
No surgery
Watch&Wait approach 8)

Rikimaroo
Posts: 98
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Mon Jan 22, 2018 6:56 pm

Thanks Mozart. Will have to pick some up. I am eating some grapes right now. Need more fruits i think, and yeah its hard to drink liquids but I am trying very hard, the constipation hurts so much when passing the poop, little balls of butt buster, ugh!! Yeah they would give me zofran before my infusion.
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

mhf1986
Posts: 104
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Chemotherapy Journey

Postby mhf1986 » Mon Jan 22, 2018 7:33 pm

Our dentist recommended Biotene and Act. So DH uses one in the morning and one in the evening. Apple juice is good for getting things moving after Zofran.

DH and the Onc have decided that the Xeloda side effects are too much so it's back to the pump in a week.
Caregiver to DH, dx age 50, mets to liver/lungs, MSS, quad wild
10/16: descending hemicolectomy w/perm. colostomy, CEA 114
11/16: port in, start FOLFOX + Avastin, CEA dropped to 11 by 4/17
6/17: CEA 15, OX discontinued for now due to neuropathy
11/17: CEA 38, changed to CAPOX+A, CEA dropped to 29 in 12/17
1/18: CT scan stable, CAPOX caused hi bilirubin and hfs, back to FOLFOX+A
6/18: next scan scheduled

Caat55
Posts: 276
Joined: Sat Dec 23, 2017 6:01 pm

Re: Chemotherapy Journey

Postby Caat55 » Mon Jan 22, 2018 8:06 pm

Hi Riki,
Thank you for your words of wisdom to my questions. This all sucks.
Try kiwi and apricots. If you can blend them into a smoothie or with ice cream for some calories.
S
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

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

Re: Chemotherapy Journey

Postby love3 » Thu Jan 25, 2018 9:56 am

ANDRETEXAS wrote:My life saver was room-tempearture Pellegrino.......especially when I wanted water (water began to taste bad) Hot tea, hot coffee, broth, soup, stew...anything that would keep my throat from closing. Hang in there !!

I second the idea of sparkling water. LaCroix sparkling flavored waters at room temperature tasted so much better to me than regular water which just tasted so flat to me.
Also I found that I could drink orange juice at a slightly lower temperature than regular water without an effect for some reason.
Regarding the constipation-my oncologist had me take stool softeners on day one of the cycle and continue until I felt I didn't need them anymore. This was a life saver! Make sure it's just a softener without a laxative.
Hang in there...take one day at a time.
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

Rikimaroo
Posts: 98
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Thu Jan 25, 2018 7:02 pm

Thanks Love...I need to take stool softener one day one of chemo or I am just going to cave in and give up. It is so painful. Will discuss with him. Anyone else ever develop a blood clot in neck during chemo? Or port may be causing it? I have a sore throat today, but will mention to doc, as I still feel some tenderness from my previous blood clot, maybe it hasn't totally gone yet.

I hate this crap man, it really sucks!! 39 years old going through this can't believe it. What the hell did I do in my life to get cancer!!! :(

Riki
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

heiders33
Posts: 178
Joined: Sat Nov 04, 2017 11:08 am

Re: Chemotherapy Journey

Postby heiders33 » Thu Jan 25, 2018 7:23 pm

You didn’t do anything! Things happen that are beyond our control and we have to roll with them. It sucks but we don’t have much choice.

On the subject of carbonated beverages, I had a cold coke today and it didn’t bother my throat. I never drink coke but for some reason have been craving one lately.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal

User avatar
ktwmn
Posts: 342
Joined: Tue Aug 02, 2011 9:41 am

Re: Chemotherapy Journey

Postby ktwmn » Thu Jan 25, 2018 10:21 pm

Riki, ask to have a port study done. I was having terrible pain in upper back and noticed a neck vein was enlarged. The pain was constant. So I had a port study. Sure enough it had migrated to the azygos vein and had to be taken out. (Also it had quit giving blood months before).
Dx 7/11, Stage IIIc CC
12 txs Folfox 8/2011-2/2012
MSS, KRAS-mut G12D
NED until 3/2015, mets to liver and peritoneum
April-December 2015: 15 txs folfiri+avastin
Liver mets resolved; pelvic met remains
January-May 2016: folfox+avastin; allergic rxn to oxi
June-August 2016: 5FU+avastin
October 2016: looking into immuno trial
January 2017: maintenance chemo xeloda + avastin

Rikimaroo
Posts: 98
Joined: Tue Dec 20, 2016 8:48 pm

Re: Chemotherapy Journey

Postby Rikimaroo » Thu Jan 25, 2018 11:04 pm

Thanks ktwmn. I will mention to my doctor tomorrow when I call in. I was put on Xaralto about a week ago and things were feeling better but I think it’s coming back and I didn’t do avastin this time. So I think the port is the cause. I will see what he recommends. I only have three treatments left maybe they can do through arm I have good veins. Remove port.

Will discuss with Onc
Diagnosed at 38 y/o male, 3 kids 7,9,14 - Now 39.
RC T3N1M0
Chemo Rad, CCR - W&W 5/2017
Local Recurrence, discuss options 11/26/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/15/2017, folfox/oxapalatin + avastin starts on the 12/20/2017
Blood Clot in Neck 1/16/2018, stop avastin, continue FolFox
Surgery Liver and Rectal Resection TME 4/3/2018

orlar
Posts: 46
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: Chemotherapy Journey

Postby orlar » Fri Jan 26, 2018 3:20 pm

Chemo is harsh and constipation can be brutal. My constipation relief started on day one of the cycle by using 1 gelcap stool softner twice a day (recommended dose up to 3 gelcap daily). My GOTO that worked for me was room temp. apple juice to finally get things moving. After that, I kept taking 1 stool softner everyday the rest of the cycle.

I also had anal fissures that made every BM feel like passing glass shards. My surgeon recommended the stool softner, not straining excessively during a BM, and using baby wipes as the final clean up all to help heal the fissures. They can also prescribe a topical cream (nitroglycerin based I think) to help heal the fissures.

Hopefully your clot and neck pain will be resolved very soon. Hang in there, you're halfway through it!
56yo male DX 5/15/17 Right Hemi colectomy (cecum) 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D mut.
2/18 PET=more disease, liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18 16.9
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced


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