Anyone with Stage IVa just do Xelolda or 5-fu?

Please feel free to read, share your thoughts, your stories and connect with others!
henry123
Posts: 13
Joined: Sun Oct 08, 2017 3:25 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby henry123 » Sun Oct 29, 2017 9:41 am

cbsmith wrote:For stage 4 my view is to throw everything you have at it, at least to try it. If it was me I would do the oxi until after the first scan to see if it was working.

The thing with stats is they are based off a large group of people. Over a group there was a 7% improvement. But if you get down to just one person, your husband, it is really either a 100 or a 0. If oxi works on the tumors for him then he will have a much better than 7% improvement. On the flip side if it doesn’t work he will have a 0% improvement.


That is a really sound advise.
For me 5 FU then Capox then Avastin+ Iri then Regro didn't work.
Now I am on Opdivo. It seems to be giving some positive results. Med Oncologist had told me it works in maybe 40% of msi-h cases (which are themselves around 10-15% of crc cases . )
So chin up and keep on trying . You never know what will work..bast of luck.
I am MSI-H, mmrd.

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Sun Oct 29, 2017 4:00 pm

Thanks henry123.

NHMike, green tea extract might interfere with chemo so he's just taking a break from it until these rounds of chemo are done. I'll definitely resume giving it to him in January.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Wed Nov 01, 2017 4:08 pm

Today was husband's 2nd Oxi- infusion. He had additional side effects this time round that he didn't have during his first: sensitivity to cold drinks. While he was at the cancer center, he had some milk that irritated his throat and was uncomfortable, but it wasn't a huge deal. I made him some cinnamon tea when I brought him home and he's now napping. He'll be avoiding cold food and drink for the time being. Other than that, things are A-OK!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Robino1
Posts: 180
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Robino1 » Wed Nov 01, 2017 4:43 pm

mpbser wrote:Today was husband's 2nd Oxi- infusion. He had additional side effects this time round that he didn't have during his first: sensitivity to cold drinks. While he was at the cancer center, he had some milk that irritated his throat and was uncomfortable, but it wasn't a huge deal. I made him some cinnamon tea when I brought him home and he's now napping. He'll be avoiding cold food and drink for the time being. Other than that, things are A-OK!


Room temp works for me. I get a bottle of water out and let it sit for a while. Same with orange juice. That cold effect thing should go away in a few days. Mine lasts about 5 days or less.
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo req
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites causing the distention.
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7

Aqx99
Posts: 248
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Aqx99 » Wed Nov 01, 2017 5:58 pm

I find that if I hold a cold beverage at the front of my mouth for a moment to let it warm slightly, I can swallow it without the cold sensitivity. It usually takes about a week or so for it to wear off for me, though the touch cold sensitivity lasts longer. I sometimes forget and walk out of the bedroom without slippers on and feel the familiar electricity shooting through the soles of my feet. It makes me run back to the bedroom for my slippers.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

mhf1986
Posts: 64
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mhf1986 » Wed Nov 01, 2017 7:17 pm

Dh was on 5-FU/Leu/Avastin only since June and the CT scan showed 1 cm increases in the liver tumors across the board. We are adding back OX on Nov 14th and switching to Xeloda at that point too. Hoping to get another 3-6 months on this before neuropathy kicks in again. Cold drinks were an issue and I expect them to be again...time for decaf coffee, tea, hot chocolate.

Our oncologist told us that stopping the OX when the neuropathy got bad (it was 6 months ie 12 treatments) allows the hands/feet to recover and allows OX to be added back in later; this means we get more time with the FOLOX/XELOX before having to switch regimes. His hands/feet are now back to about 95% normal after being off it 5 months. The OX was so dramatically successful last time that we are hopeful it will be again. Am wondering if we can discontinue in 3-4 months, wait, and add back again, repeat.

He is cold all the time. I'm thinking of buying a heated throw for the family room. The heat is set at 73 and he's still got 4 layers on.

Do look at a minor blood pressure medicine, Norvasc has worked wonders with the Avastin-caused increase.
Caregiver to DH, dx age 50, mets to liver, MSS, KRAS wild
10/16: hemicolectomy, colostomy, CEA 114
11/16: FOLFOX, Avastin 12/16
4/17: CEA 11, blood pressure medicine added
6/17: CEA 15, OX discontinued due to neuropathy, Vit D added
11/17: CEA 38, back on OX due to liver tumors' growth, switched to Xeloda too

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Fri Nov 03, 2017 5:48 am

It's good to know that OX can be really helpful.

So far, he doesn't seem sensitive to cold in any way other than beverages, and even that was almost gone by the end of the night last night. It would not be comfortable for me to have the heat at home set to 73, but if we had to do that, we would.

My husband's CT scans never picked up his two liver masses and one is right on the surface - weird, huh? MRIs for him are going to be/have been how his mets are monitored.

His BP yesterday wasn't toooooo bad, at least it wasn't in stroke central as it was in the first treatment. However, his blood glucose was quite elevated at 177. He dismissed it as he has his high glucose readings the last couple of times he has been tested because his A1C a couple months back put him out of the "diabetic" category and into "pre-diabetic." He is a sugar addict and has been for most of his life, so that is going to be a constant challenge.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby LPL » Mon Nov 06, 2017 7:35 pm

Hi mpbser,
Just checked in to see how you are doing.
Glad to hear it sounds as it is going OK :)
About the elevated glucos - do keep an eye on it! It was at approximately this time that hubby reacted bad to the steroids.
All the best to you going forward.
Kind regards
/LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Wed Nov 08, 2017 5:41 am

Thanks for checking in, LPL! I appreciate it!

I think husband had a black & white cookie around the time (night before?) of that glucose test. I hope he adds 2+2. I don't bring crap like that into the house. His mother brought these cookies here at his request a couple months ago (storing them in the freezer). I could have killed her. Like seriously. If your son was a crack addict, would you buy and bring him crack???

I just found out last night that he is starting to experience sensitivity to the cold in his fingers a bit. The temperatures have dropped dramatically here recently so it's possible that he has had that all the while, just had not been in the conditions for him to experience it.

Good thing I brought his fleeces and other winter clothes down from the attic the other day!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

User avatar
LPL
Posts: 302
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby LPL » Wed Nov 08, 2017 9:59 am

Well, I do understand the frustration...
Actually it was not until hubby had that scary very high Glucos (due to steroids), when he had to take insulin injections, that he realized the impact of different food. Also the impact of exercise! He had to take blood tests at home many times during the day and he suddenly saw & understood the impact of different food and of taking long walks.
Yes, cold weather is not making the cold sensitivity easier. But it was manageable for my DH with gloves and warm socks and a soft carpet in the bathroom.
All the best /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby NHMike » Wed Nov 08, 2017 12:59 pm

mpbser wrote:Thanks for checking in, LPL! I appreciate it!

I think husband had a black & white cookie around the time (night before?) of that glucose test. I hope he adds 2+2. I don't bring crap like that into the house. His mother brought these cookies here at his request a couple months ago (storing them in the freezer). I could have killed her. Like seriously. If your son was a crack addict, would you buy and bring him crack???

I just found out last night that he is starting to experience sensitivity to the cold in his fingers a bit. The temperatures have dropped dramatically here recently so it's possible that he has had that all the while, just had not been in the conditions for him to experience it.

Good thing I brought his fleeces and other winter clothes down from the attic the other day!


I think that we were below freezing or around there last night. The best evidence is that my daughter swiped my space heater. So I'll put on an extra layer of socks. I need to pull out the long underwear - greatest stuff in the world in Northern New England. I'm an EMS fan myself and hope that they don't go bankrupt again.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

mpbser
Posts: 304
Joined: Wed Apr 19, 2017 11:52 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby mpbser » Mon Nov 20, 2017 5:55 am

Hi everyone, I figured I would keep posting on this thread since it contains recent history.

Husband is enjoying his week off from chemo before he starts round 3 on Wednesday. While it's no fun for him to have his OX infusion the day before Thanksgiving, at least he won't have to work Thursday. He has felt the fatigue this last cycle much more than he did in cycle 1. He also had some painful stomach issues with his nightly Xeloda doses for a few days. He figured out if he timed a dosage of cimetidine and zofran around his 8:30pm Xeloda, he would avoid the pain. So, we're relieved he has a solution to that problem.

His 4th and final (for now) cycle will end the day after Christmas. Great, huh? At least he will be done before New Year's Eve.

Oh, one other thing I almost forgot. He seems to be under the impression that he can drink alcohol during his weeks off from chemo. I don't think that's a good idea, especially because we won't know what his bloodwork is like until day 1 of his next cycle. Thoughts?
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

NHMike
Posts: 553
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby NHMike » Mon Nov 20, 2017 6:36 am

mpbser wrote:Hi everyone, I figured I would keep posting on this thread since it contains recent history.

Husband is enjoying his week off from chemo before he starts round 3 on Wednesday. While it's no fun for him to have his OX infusion the day before Thanksgiving, at least he won't have to work Thursday. He has felt the fatigue this last cycle much more than he did in cycle 1. He also had some painful stomach issues with his nightly Xeloda doses for a few days. He figured out if he timed a dosage of cimetidine and zofran around his 8:30pm Xeloda, he would avoid the pain. So, we're relieved he has a solution to that problem.

His 4th and final (for now) cycle will end the day after Christmas. Great, huh? At least he will be done before New Year's Eve.

Oh, one other thing I almost forgot. He seems to be under the impression that he can drink alcohol during his weeks off from chemo. I don't think that's a good idea, especially because we won't know what his bloodwork is like until day 1 of his next cycle. Thoughts?


I've seen a fair number of alcohol warnings from various places over the course of treatment but I don't pay close attention as I don't drink (outside of an ounce or two a year). My body doens't handle alcohol well because of a genetic issue so I avoid it. There are adverse effects from some of the medications that we're taking, and, as you mentioned, it can skew lab results. There are things that I've given up for cancer treatment for a long time and I just have to live with it as most others also have to do.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

User avatar
susie0915
Posts: 441
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby susie0915 » Mon Nov 20, 2017 8:35 am

I was going through chemo during the holidays in 2015. I didn't drink alcohol only because I didn't really feel like it. I don't remember anyone saying I couldn't but I didn't ask either. Seems to me that it probably wouldn't be a good idea, just for the fact you don't know how it may affect him with those drugs in his system. Just my opinion, but he may want to ask his oncologist if having a drink would be okay.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

Beckster
Posts: 180
Joined: Thu Jan 12, 2017 3:01 pm
Location: New Jersey

Re: Anyone with Stage IVa just do Xelolda or 5-fu?

Postby Beckster » Mon Nov 20, 2017 8:51 am

mpbser wrote:Hi everyone, I figured I would keep posting on this thread since it contains recent history.

Husband is enjoying his week off from chemo before he starts round 3 on Wednesday. While it's no fun for him to have his OX infusion the day before Thanksgiving, at least he won't have to work Thursday. He has felt the fatigue this last cycle much more than he did in cycle 1. He also had some painful stomach issues with his nightly Xeloda doses for a few days. He figured out if he timed a dosage of cimetidine and zofran around his 8:30pm Xeloda, he would avoid the pain. So, we're relieved he has a solution to that problem.

His 4th and final (for now) cycle will end the day after Christmas. Great, huh? At least he will be done before New Year's Eve.

Oh, one other thing I almost forgot. He seems to be under the impression that he can drink alcohol during his weeks off from chemo. I don't think that's a good idea, especially because we won't know what his bloodwork is like until day 1 of his next cycle. Thoughts?


I am not a daily drinker, but I like a martini every once in a while, especially during the holidays. I was on Xeloda, so I asked my oncologist if I could drink. He said yes, but don't drink until it is your week off. OK...every 3rd week, when I was off my pills, I had a martini after my bloodwork. He had no problem with this as long as I did not overdue it. I had my bloodwork drawn on a Fridays and met with him on Mondays.
57/Female
DX:(CC) 10/19/16
11/4/16- Lap right hemi(cecum)
CEA- Pre Op (1.9), Pre Chemo (2.5)
Tumor type: Adenocarcinoma
Tumor size: 3.5 cm x 2.5 x 0.7 cm
Tumor grade: G3 (surgical) G2 (pre-op)
TNM: T3N0M0/IIA
Positive lymph nodes: 0/24
Lymphovascular invasion
Surgical margins: clear
Lynch- Negative
12/27/2016 - Capeox, anaphylactic reaction to oxaliplatin on first infusion-discontinued
1/2/17 to 6/9/17- Xeloda monotherapy
6/26/17- CT scan NED :D
CEA- 6/17- 3.6, 9/17- 2.8
Clear Colonoscopy 10/17 :D


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



Who is online

Users browsing this forum: No registered users and 15 guests