For those still taking oxaliplatin (FOLFOX, XELOX, etc)...

Please feel free to read, share your thoughts, your stories and connect with others!
lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

For those still taking oxaliplatin (FOLFOX, XELOX, etc)...

Postby lpas » Fri Feb 27, 2015 12:33 pm

I had my second infusion yesterday and decided to try something a little different. Prior to going in, I took 5 grams (5 1,000mg capsules) of L-Glutamine. Just wanted everyone to know that I think this really helped. Thus far I've noticed less cold sensitivity, and significantly less jaw pain. Took another 5 grams at bedtime and again this morning.

I know every infusion tends to be different, so maybe this is just a normal fluctuation in side effects but for now, I'm choosing to believe I have some control :wink: and that the L-glutamine helped.

Just wanted to pass along the info. Has anyone else tried this? If so, did you notice any difference?
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby Rheaeliza » Fri Feb 27, 2015 2:12 pm

I took that all through my oxali treatments and had very minimal neuropathy and no permanent damage.
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby Stanfordmom » Fri Feb 27, 2015 3:23 pm

I still have some neuropathy in my hands and feet six months after my treatment. Do you know if the L-glutamine will help now to get rid of it?
thanks a lot,

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby plastikos » Sat Feb 28, 2015 8:34 am

Just wondering, does your onc agree with you taking L-glutamine?
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

peanut_8
Posts: 2334
Joined: Sun May 25, 2014 1:31 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby peanut_8 » Sat Feb 28, 2015 9:45 am

I'm glad you think the l-glutamine helps off-set the FOLFOX side-effects laps. Like plastics, I'm wondering what your onc thinks about it. It is an interesting supplement. Knowing you, I'm sure you have done your due diligence on the subject.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby lpas » Sat Feb 28, 2015 6:03 pm

The L-Glutamine was recommended to me by my ND (formerly of CTCA) who is board certified in Naturopathic Oncology. I ran the full list of her recommendations by my oncologist and he indicated he didn't have a problem with any of them, although his review did seem pretty cursory. If anyone has seen info suggesting it would be contraindicated, I'd definitely be interested in reviewing it (although I don't have a science background like Grouseman or some of the other experts here). For now, I'm feeling fairly comfortable with it.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo

peanut_8
Posts: 2334
Joined: Sun May 25, 2014 1:31 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby peanut_8 » Sun Mar 01, 2015 11:34 am

Here is a link to a comprehensive overview of l-glutamine:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/


I'll add the summary:

CONCLUSIONS
The influence of glutamine on body homeostasis is protean. States of physiologic stress, including those resulting from the treatment of malignant disease, are characterized by a relative deficiency of glutamine. Supplementation with this inexpensive dietary supplement may have an important role in the prevention of gastrointestinal, neurologic and, possibly, cardiac complications of cancer therapy. These complications often negatively affect the quality of life and may also lead to changes in therapy, which potentially alter efficacy. Glutamine may also improve the therapeutic index of both chemotherapy and radiation, increasing cytotoxicity while concurrently protecting against toxicity. However, the current evidence is not sufficient to recommend its regular use. Further studies of glutamine supplementation in these areas is warranted and multicentric, placebo-controlled phase III studies are needed to evaluate the role of glutamine for the prevention of mucositis, neurotoxicity and cardiotoxicity, and for the prevention of hepatic venoocclusive disease in patients undergoing hematopoietic cell transplantation before any definitive recommendation can be made.

For the record, I chose to use glutamine during treatment, and thought it was helpful.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby Ceebo » Sun Mar 01, 2015 11:56 am

Peanut, how much do you take and how often?
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

peanut_8
Posts: 2334
Joined: Sun May 25, 2014 1:31 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby peanut_8 » Sun Mar 01, 2015 12:01 pm

I was using Glutagenics by Metagenics. I went with the recommended dose of 3 tsp per day. I have kind of slacked off since I'm post treatment, and it was a bit of a pain to mix the stuff in water.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

User avatar
GrouseMan
Posts: 819
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby GrouseMan » Sun Mar 01, 2015 12:10 pm

Ipas,

I've no opinion one way or another. Studies are for the most part lacking or incomplete. Seems to be some evidence that this can help particularly with diabetic neuropathy. My wife tried it at my urging, but for her she seemed to feel it upset her GI track more so than without. She did continue to take large oral doses of Magnesium and Calcium Just prior and during her infusions days, and a couple of days afterward, and thinks this helped despite her oncologists practice own study suggesting IV Mg/Ca before the OXI infusion subjectively didn't seen to matter one way or another with most patients. YMMV is all I can say. If it's working for you keep at it.

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

jaycey60
Posts: 38
Joined: Thu Mar 05, 2015 11:27 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby jaycey60 » Thu Mar 05, 2015 11:52 pm

Hi All - I'm a newbie as my partner was just diagnosed a month ago. She's about to start her first chemo: FOLFOX (48 hours on, 12 days off, 4 cycles and then a PET/CT) and I've been reading about L-Glutamine to mitigate neuropathy and other side-effects. Your information has been really helpful, and in line with what I've read elsewhere. Partner's naturopath suggested 4g up to 4x/day of soluble Glutamine. But I can't seem to find information about which brand or even just what characteristics to look for in Glutamine powder. At the store today, there were 2 brands: one was double the price of the other - no visible difference otherwise! Suggestions??

thanks. And thanks for being here!
Partner of L
2/2015: Dx @ 41 yrs rectal cancer T3,N2,M1a (Stage IVa, mets in pelvic and abdominal lymph nodes)
KRAS mutant
3/16/15: Start first treatment: FOLFOX
3/19/15: Heart failure
4/6/15: Switch to FLOX
5/15/15: PET/CT: reduction of main tumor & 4 of 8 malig lymph nodes.
Rx: 2 more chemo
7/20/15 L starts treatment arm of immune-stimulant trial: interferon, Celebrex & rintatolimod for 5 days, then resection of rectal tumor & all lymph nodes in pelvis, peri-rectal & abdomen.

lpas
Posts: 1009
Joined: Wed Nov 19, 2014 11:11 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby lpas » Fri Mar 06, 2015 12:31 pm

jaycey60 wrote:Hi All - I'm a newbie as my partner was just diagnosed a month ago. She's about to start her first chemo: FOLFOX (48 hours on, 12 days off, 4 cycles and then a PET/CT) and I've been reading about L-Glutamine to mitigate neuropathy and other side-effects. Your information has been really helpful, and in line with what I've read elsewhere. Partner's naturopath suggested 4g up to 4x/day of soluble Glutamine. But I can't seem to find information about which brand or even just what characteristics to look for in Glutamine powder. At the store today, there were 2 brands: one was double the price of the other - no visible difference otherwise! Suggestions??

thanks. And thanks for being here!


My ND recommended either of these two as good brands. The first is powder and the second is capsules. I'm not a big fan of having to mix supplements into drinks, so I went with the capsules. Good luck!

https://shop.thorne.com/products/oncology-support/mucosaqol-reg-ndash-new-unflavored-formula

http://www.amazon.com/L-Glutamine-1000mg-1-gram-250c/dp/B0016APUGC/ref=pd_sim_hpc_1?ie=UTF8&refRID=0626B2KW2SW4NSMX1N1E
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
2/19 clean scope
5/19 clean-ish CT (watching a new 4mm lung thingie--likely mucus plug)
Ongoing celecoxib, cimetidine & other targeted supplements
Mom to a 5 & 7yo

jaycey60
Posts: 38
Joined: Thu Mar 05, 2015 11:27 pm

Re: For those still taking oxaliplatin (FOLFOX, XELOX, etc).

Postby jaycey60 » Tue Mar 10, 2015 9:04 am

Thanks IPAs - I'll check those out!
Partner of L
2/2015: Dx @ 41 yrs rectal cancer T3,N2,M1a (Stage IVa, mets in pelvic and abdominal lymph nodes)
KRAS mutant
3/16/15: Start first treatment: FOLFOX
3/19/15: Heart failure
4/6/15: Switch to FLOX
5/15/15: PET/CT: reduction of main tumor & 4 of 8 malig lymph nodes.
Rx: 2 more chemo
7/20/15 L starts treatment arm of immune-stimulant trial: interferon, Celebrex & rintatolimod for 5 days, then resection of rectal tumor & all lymph nodes in pelvis, peri-rectal & abdomen.


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



Who is online

Users browsing this forum: Google [Bot], KathyLynn, Majestic-12 [Bot], Mohrfamily and 51 guests