Please need some answers, feeling scared

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Hopegirl
Posts: 50
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 at 46 years old . Now 47. 4 kids 26,22,12,11
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
8-7-2018 Cea 0.7
11-13-2018 Clear Scan
11-13-2018 Cea 1.4
12-11-2018 Clean colonoscopy
Pray for NED Always

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O Stoma Mia
Posts: 1450
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: 248
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
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

NHMike
Posts: 1838
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.
6/17: 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; 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; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
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

heiders33
Posts: 313
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, KRAS G12A
June-July 2017: 28 days of XEL/radiation
Sep 2017: laparoscopic LAR/loop ileostomy
Oct 2017 - February 2018: XELOX six rounds
Mar 2018: reversal
Apr 2018: CEA 2.1, normal blood counts
May 2018: CT liver spot
Aug 2018: Abnormal PET, CEA 2.4
Sep 2018: robotic and laparoscopic liver resection with HAI pump
Oct 2018: Clear CT and colonoscopy, CEA 1.7, begin six months FUDR and FOLFIRI

rp1954
Posts: 1391
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 researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher


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