Please need some answers, feeling scared

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Hopegirl
Posts: 30
Joined: Wed Nov 08, 2017 10:06 am
Location: Modesto ca

Please need some answers, feeling scared

Postby Hopegirl » Tue Feb 06, 2018 10:42 pm

Here goes. Tomorrow was suppose to be my 4th cycle of Oxaliplatin and my Xeloda pills. Saw my oncologist this morning before my infusion and had blood work . The 3rd cycle gave me more neuropathy issues already . It was stronger symptoms and also my platelets was down a little bit today. My oncologist is stopping my Oxaliplatin due to bad neuropathy . And just continue to do xeloda pills next week . Hopefully my blood work will be better next week . Has this happen to anyone . I’m so scared that if I don’t do the Oxaliplatin also that I will have reoccurrence . My oncologist says I’m doing fine . On my surgery they took everything out already and this is suppose to be mop up Chemo but I’m still so scared that I will get reoccurrence . I really like my dr. And I trust him but it’s still very scary . I really wanted to finish the 6th cycles if not at least be able to do 4. Has anyone had to stop Oxaliplatin Sooner and do only xeloda pills only . Any advice what I can ask my dr. . Should I ask for 2nd opinions. Thanks
Diagnosed 10/11/17 46 years old female 4 kids 25,22,12,10
Colon cancer Stage 3b 5/26 lymph nodes positive
Surgery 10/19/17
Cea 0.6 11/15/17
Finished last Xeloda pills 6 cycles 4-10-2018
Did only 3 infusions of oxilaplatin due to bad neuropathy
5-8-2018 Cat Scan clear
5-8-18 Cea 0.6
5-10-18 Port removed
Pray for NED always

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O Stoma Mia
Posts: 1275
Joined: Sat Jun 22, 2013 6:29 am

Re: Please need some answers, feeling scared

Postby O Stoma Mia » Tue Feb 06, 2018 11:23 pm

Hopegirl wrote:... Has this happen to anyone?

Yes, that happened to me on my 4th cycle of Xelox. That was over 5 years ago and I haven't had any recurrences since.

If I were you, I'd try not to worry about it so much.

AppleTree
Posts: 167
Joined: Fri Mar 18, 2016 8:16 am

Re: Please need some answers, feeling scared

Postby AppleTree » Wed Feb 07, 2018 4:24 am

I am currently on Folfox (next week will be my 8th time out of the scheduled 12). I started out at full dose. Lost most of my hair! I was doing every 2 weeks, but then my platlets were not passing for the green light, so Dr said every 3 weeks. Then they did not pass at the 3 week mark last time so it stretched to 4 weeks. That dose...Dr lowered the Ox part of the dosage.

So...next week is #8. I feel much better this week with the lower dose. I see my Dr in 2 days. Maybe she will lower the Ox dose again because I do have increasing numbness in fingers and feet, but I would not consider it extreme. I can still knit! However, I did loose balance a few weeks ago and fell down. Never have done that before! Now I get why they ask at every appointment if I have fallen.

Everyone is different and bodies react differently. Fortunately, there is more than 1 chemo that works on our cancer. I make sure to tell my Dr everything and she makes adjustments as we go along.

Your Dr is probably doing the right thing for you. There is always a chance that the numbness will not go away, so why make it worse when there are other chemo options?

Hang in there.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
March 14 - April 16 - 25 sessions
Tumor shrunk just over 50% Lymph nodes 0/13
Operation to remove rectum with temp Ileo June 17
Reversal July 20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
June 16, MRI shadow in lung
Pet scan - 6.6mm Met in Upper right lobe
July 30 VAT surgery Mass General/Boston
August 24 port installed
August 30 Folfox

NHMike
Posts: 1233
Joined: Fri Jul 21, 2017 3:43 am

Re: Please need some answers, feeling scared

Postby NHMike » Wed Feb 07, 2018 5:51 am

I have my third infusion in less than three hours. I had cold sensitivity and neuropathy that lasted longer after my second cycle and it felt awful so I asked the oncologist if we should wait a week and if he could drop the dosage 20% and he agreed. I had bloodwork done last week and it was okay. Just consider it a chemo-break; something discussed on the forum from time to time. People may take chemo breaks for a week or two to travel or because of medical reasons (getting sick, an infection, a hurricane that takes out your infusion center, etc.), or your bloodwork numbers show a problem.
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

heiders33
Posts: 200
Joined: Sat Nov 04, 2017 11:08 am

Re: Please need some answers, feeling scared

Postby heiders33 » Wed Feb 07, 2018 11:59 am

I’m on my sixth and final treatment and had my dosage reduced by 50% due to neuropathy. I feel OK with this. You have to balance between maximum impact of treatment and reducing the risk of long term side effects. Since this is “mop up” chemo I feel I’ve done the best I could do. Don’t worry about continuing with Xeloda only - I’ve read of many others doing the same.
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
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

rp1954
Posts: 1312
Joined: Mon Jun 13, 2011 1:13 am

Re: Please need some answers, feeling scared

Postby rp1954 » Wed Feb 07, 2018 9:36 pm

Definitely get extra, outside, independent opinions. I talked to several MDs that use different alternative, less known chemistries with interesting medical literature, too.

We never agreed to oxi-. We have added a lot of things to oral chemo to improve cancer inhibition. Some of it is driven by extra bloodwork, a lot can be done on others' broad recommendations and experience, like Life Extension's or the better integrative doctors.

We've done other things without the oxi- for over 7 years despite sets of real mets, without raising any neuropathies. My wife is still a piano player. There are other chemistries that improve the odds, the big questions are what options exist, who gets to do the targeting, and who gets to give their blessing to it.

Oxi- for adjuvant treatment only adds a small percentage to survival stats. Frankly I think that it is possible to do better than oxi-, targeting some bad CRC types adding cimetidine and/or celecoxib (Celebrex), maybe metformin. Ditto PSK and vitamin D3, based on bloodwork.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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