Neuropathy - progression - tipping point?

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Kobe
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Neuropathy - progression - tipping point?

Postby Kobe » Sun Aug 13, 2017 10:27 am

Hi,
Monday will be treatment 8/12 on 5-FU. After treatment 5 we did a 20% dose reduction because of the side effects - specifically swelling/redness and peeling on my hands along with a stinging and tingling feeling and pressure in my chest. My hands aren't peeling anymore but neuropathy is increasing. I feel the tingling in my hands all the time and I'm starting to feel it in my feet.

My question is - is there a way to tell what the tipping point is for neuropathy? Will more treatments make it worse to the point where the tingling won't go away after treatment or will more treatments progress to the point where I start to lose more function in my hands? This cycle the neuropathy has increased since treatment 10 days ago. I don't want to get to the point where the damage is permanent. Neuropathy is hard to describe to the doctors. Right now my feeling is I do treatment 8 but maybe that's it. I'm Stage 2bTaN0M0. I'm doing an echo next week to be sure my heart is ok.

I know with Oxi added the side effects can be more pronounced and many people have had to drop Oxi. I'm just doing 5-FU and I can't find very much information about the progression of neuropathy. I'd love to hear your experiences.

Thanks :)

benben
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Re: Neuropathy - progression - tipping point?

Postby benben » Sun Aug 13, 2017 10:53 am

My Oncologist said neuropathy effects really kick in around session 6-7 and progresses a lot in treatments 9-12.
This may not hold true for everyone, but he said that this was the normal for what he's seen in his 10 years of being an onc.
Tipping point is hard to say, at your early stage I'd say 8 treatments is probably enough. I myself am stage 3b and my onc said
at treatment 6 - it was probably enough due to the pathology of the tumor that was removed prior to surgery, being low grade with
very clear margins. I brought up the Asco report at 2nd session. He told me, he wouldn't discuss it until I made treatment 6.
At beginning of 6 he gave me his blessing to stop at 6 if I wanted, but suggested we try to make 8 and reassess then to see if I felt I could continue.
For me neuropathy hasn't been bad, but did get a bit more numbness in fingers after treatment 6. I've had zero numbness in my feet until this round.
I have 1 big toe that is a little numb.. It's blood counts that have got me more concerned with neuropathy. Obviously some have completed treatments
and been out for awhile might give you better suggestions in conclusion of their experiences.

Oh and I asked my onc if doing 5-FU without oxi for rounds 9-12 would do much good.
He said probably not. Wasn't big on efficacy of 5-FU alone.

Discuss with your onc.
Best wishes
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
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5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
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Joannerogers
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Re: Neuropathy - progression - tipping point?

Postby Joannerogers » Sun Aug 13, 2017 11:26 am

I suggest discussing it with your onc. I always followed my oncs advice because he's the one with all the knowledge. Especially if your neuropathy is not too bad. I have permanent neuropathy but it's not terribly bad...just a tingling feeling all the time. I did monitor how bad it was as I went through my treatment because like you I didn't want it to get too bad.
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
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Kobe
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Re: Neuropathy - progression - tipping point?

Postby Kobe » Sun Aug 13, 2017 12:00 pm

Did any of you get to the point where neuropathy went from tingling to losing motor function - loss of grip, dropping things, etc?

Once chemo ended did the tingling stop?

Soccermom2boys
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Re: Neuropathy - progression - tipping point?

Postby Soccermom2boys » Sun Aug 13, 2017 5:21 pm

Kobe wrote:Did any of you get to the point where neuropathy went from tingling to losing motor function - loss of grip, dropping things, etc?

Once chemo ended did the tingling stop?


So I did the 8 rounds of FOLFOX that my onc prescribed and all of them at full dosage. While my fingers had the tingling from cold sensitivity throughout, I hardly ever felt anything with my toes...until I started my 8th and final round. It just got progressively worse in both hands and feet well after my chemo ended. My hands never escalated to the level of discomfort/pain as my feet and I only get an occasional twinge out of them--I am now 14.5 months out from last treatment. But for at least the first six to eight months after treatment I woke up every morning with my hands feeling like giant claws until I could bend my fingers and get them moving more normal like. It was challenging at times to type because my fingertips didn't quite feel the keyboard, but nothing overly bad in big scheme.

Then there are my feet. So as I said, never felt anything in them until I went to start last round. They escalated to what I would call a 7 out of 10 on a pain scale. I could walk, but forget shoes with heels and I hated socks touching my feet (still do)--invested in some Uggs where you can wear with no socks and still keep feet warm and toasty. I am a teacher so I was nervous about how it would be for work, but in general I did ok, I just never wore shoes with heels unless they had a wedge to them. I also ended up going on Gabapentin for about eight months, but it only took the edge off, never really made me feel like my feet were normal. You increase the dosage as you go to see what works. 300 mg once a day did next to nothing, but doing 300 mg twice a day took the edge off so I stuck with that, but it made my head feel like it was in a fog and by like 1:00 I felt like a zombie. Then in April I decided to scale back to the 300 mg once a day as I noticed an ever so slight leveling down of discomfort with my feet. And wow I became more human again not being so fuzzy-headed and zombie-like every afternoon. Then when my prescription ran out in June I decided to just not take it any more and deal with it. I noticed just last week that the discomfort leveled down a little and so today I would say it is sitting at a 2 on a ten point scale. Would love for it to go completely away, but I am grateful it is heading in the right direction and not so bad I have to take medication for, just have to live with it.
I am able to walk and run, thankfully the neuropathy has not affected those areas, but putting on socks and sneakers isn't a pleasant feeling, but very doable. Fingers crossed I will get to a day when my feet feel normal, but am also mentally prepared for the fact that may not be the case.

Not sure what the tipping point is? I of course wonder if I had stopped at seven rounds (not that my onc ever said that was an option for me) would the neuropathy had been so bad or was the damage truly done by then and it only took until the start of the 8th to catch up? I am always amazed and so jealous of those who had little to no issue with long-lasting neuropathy after being on FOLFOX. It has taught me the virtue of patience.
8/3/15 Went in with a hemorrhoid, came out with a tumor
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12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
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2/8-6/2/16 8 rounds of Folfox

zephyr
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Re: Neuropathy - progression - tipping point?

Postby zephyr » Sun Aug 13, 2017 6:41 pm

Kobe wrote:Did any of you get to the point where neuropathy went from tingling to losing motor function - loss of grip, dropping things, etc?

Once chemo ended did the tingling stop?


A chemo nurse told me very early in this journey to be upfront - no holding back - about the neuropathy because if it lasts too long between treatments, it might be sign that it's turning into a permanent condition. My onc stopped the oxaliplatin after the 8th treatment because my neuropathy was lasting well into the recovery week. Also, to answer your question, I did start dropping things. Mostly little things that one usually holds with the fingertips; I just couldn't feel them. I also had trouble picking up little things that required more coordination.

My neuropathy actually got worse after stopping oxaliplatin but, reading here, I see that it's not unusual for 5FU neuropathy to kick in at about treatment 9. I ended up on Gabapentin. I'm only taking 300 mg because anything more has me walking into walls when I try to get up at night. At 300 mg, it takes the edge off but the neuropathy is still there in my fingertips, toes and the balls of my feet. As for whether the neuropathy will stop when I stop chemo ... I'll let you know. :)
Last edited by zephyr on Mon Aug 14, 2017 9:02 am, edited 1 time in total.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS
Aug-2016-May-2018 Folfox, 5FU, Folfiri & Avastin
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
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NHMike
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Re: Neuropathy - progression - tipping point?

Postby NHMike » Sun Aug 13, 2017 7:15 pm

It seems pretty clear to me that this discussion is post-surgical and it's the FOLFOX or just 5 FU once every two to three weeks. I'm pre-surgery with Xeloda and am wondering what the dosage is post-surgery vs pre-surgery. If anyone is on XELOX or had it, perhaps they could do a mg comparison of post-surgery to pre-surgery.

I'm about to start day 11 of Xeloda and I'd say that there is a slight difference in how my fingers feel and my toes are a bit more scaly but I can't necessarily attribute this to the Xeloda as allergies can cause these conditions in me as well and this has been the worst spring/summer for allergies that I've seen in two decades.

If the FOLFOX or XELOX is this bad, I might have to rethink what I can do in terms of work and fitness, when I go on these things. I get the feeling that the dosage is far higher for these things than pre-surgery if it results in these somewhat extreme reactions. I can certainly understand the Oxaliplatin effects but I was surprised at strong effects with just 5 FU.
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JJH
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Re: Neuropathy - progression - tipping point?

Postby JJH » Mon Aug 14, 2017 12:48 am

NHMike wrote:... I'm pre-surgery with Xeloda and am wondering what the dosage is post-surgery vs pre-surgery. If anyone is on XELOX or had it, perhaps they could do a mg comparison of post-surgery to pre-surgery...


It is misleading to discuss Xeloda dosage simply in terms of mg. The proper dose is determined by the patient's body surface area, BSA, at the time when the current cycle of treatment begins. A patient's BSA may change over time. Furthermore, different patients have different BSA and hence different mg of dose and a different number of pills prescribed for the very same protocol dose level. Dose levels of Xeloda. are measured in terms of mg/m2, not in terms of mg.

The dose level for Xeloda used in chemo/radiation is normally lower than the Xeloda dose level used in XELOX or in Xeloda monotherapy. When used with radiation, Xeloda serves only as a facilitator of radiation to make the cancer cells more 'radiosensitive'. This dose level is not usually considered as a therapeutic dose level in and of its own right.
.
Dosing
The ideal dosing of capecitabine is controversial ...
Capecitabine was initially approved at a dose of 2500 mg/m2 for 14 of every 21 days; however, this dose results in increased toxicity in the United States as outlined above. The most recent National Comprehensive Cancer Network guidelines recommend starting doses of 850 or 1000 mg/m2 twice daily when used with oxaliplatin for advanced or metastatic colorectal cancer (mCRC), while the group recommends using 1000–1250 mg/m2 twice daily when it is given as monotherapy. With concurrent radiation for rectal cancer, the recomended dose is 850 mg/m2 twice daily.
.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3097797/ 2011
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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LeonW
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Re: Neuropathy - progression - tipping point?

Postby LeonW » Mon Aug 14, 2017 9:11 am

Thanks, Mike for the educating comments, but also for the link to the NCBI article. I found it particularly interesting because of the explanation of the internal workings of Capecitabine and $-FU, and the reports on other side effects besides neuropathy. Non-US clubbers should also be aware that some of the conclusions are less valid for patients in other geographic regions of the world:
The ideal dosing of capecitabine is controversial as regional differences have been seen in the tolerance of oral fluoropyrimidines [ . . . ]those enrolled in trials in the United States had higher rates of grade 3 and 4 adverse events (relative risk [RR], 1.77), an increase in the frequency of dose reduction (RR, 1.72), and higher rates of treatment discontinuation (RR, 1.83). The results [ . . ] in the adjuvant setting also showed increased grade 3 and 4 adverse events (RR, 1.47) and higher rates of discontinuation (RR, 2.09). On further analysis, East Asian patients fared the best overall.
and
A number of possible explanations for the variation in side effect profiles between countries have been proposed. Folic acid supplementation is much more widespread in the United States than in Europe which might account for a portion of the differences. Pharmacogenetics may also play a role as genetic differences between Caucasian and Japanese patients have been discovered, but this is unlikely to explain the variation in events between the United States and European populations who have similar genetic profiles.

Besides the difference in the dosing for the US, there appear to be cost benefits for the use of Capecitabine compared to 5-FU, although these do not always reflect in the out-of-pocket costs for the patient:
In a 2009 article by Chu et al [ . . .] the mean predicted monthly complication cost was 136% greater with 5-FU monotherapy when compared to capecitabine. This equated to an additional US$601/month (95% CI: $469–$737) spent treating complications associated with 5-FU. When each agent was given in combination with oxaliplatin, this value increased to US$1165/month (95% CI: $892–$1595).
[ . . . ]
the X-ACT trial (capecitabine versus 5-FU in the adjuvant treatment of CRC) showed the cost of treating patients with capecitabine in the United Kingdom was 57% lower than that for 5-FU.61 Capecitabine use led to decreased hospitalization rates and cost savings of £3653. Societal costs for such things as patient travel and time off work were also lowered by £1318, again reinforcing the potential cost benefit of capecitabine.
[ . . . ]
trials NO16966 and NO16967 was also reported in 2009.62 In the analysis, the authors found the incremental improvement in quality-adjusted progression free survival days (QAPFSD) favored XELOX over FOLFOX4 in both first- and second-line settings. Specifically, patients gained 10.5 QAPFSD from first-line and 11.3 QAPFSD from second-line treatment. Cost calculations found savings for the National Health Service of £7600 and £3900 for patients treated with XELOX in first- and second-line settings, respectively.
[ . . . ]
a study published in the United States demonstrated a lower cost with capecitabine monotherapy when compared to 5-FU and leucovorin of US$6683 versus US$9304.63 It showed a higher acquisition cost for capecitabine but lower administration and complication costs. This held true when oxaliplatin was added to the regimens with costs of US$11,463 and US$14,320.
[ . . . ]
Overall, these studies demonstrate a measurable cost saving when using capecitabine in place of 5-FU.

However, costs to the patient do not always reflect this:
Reimbursement policies vary internationally and even regionally within the United States. Multiple analyses have shown cost savings when capecitabine is compared to 5-FU, but variability in insurance coverage for oral cytotoxics can lead to significantly higher out-of-pocket expenses for patients, especially since 5-FU is usually fully covered by insurance plans.

As said, interesting read. Thanks again,
Greetings, L
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Jan 2013 - colectomy @ spleen 2/26 nodes IVa T3N1bM1a
Feb-Jul - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
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next June 2021!

peanut_8
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Re: Neuropathy - progression - tipping point?

Postby peanut_8 » Mon Aug 14, 2017 11:19 am

Hi Kobe,
Your symptoms sound more like Hand & Foot syndrome as apposed to neuropathy. H&F is something that people on Xeloda (the oral form of 5-FU) often get.

Symptoms include:

Stinging or tingling, particularly in the fingertips and toes which can progress into a burning type of pain
Dry, cracked, scaling, or peeling skin
Thickened skin (similar to what a callus looks like)
Mild or bright redness
Swelling
Blistering

The symptoms can be managed with lotion and topical treatments:

Here's more info from MSKCC. .. https://www.mskcc.org/cancer-care/patie ... t-syndrome

Your chest tightness is something you should inform your dr about.

Best Wishes,
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

Kobe
Posts: 27
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Re: Neuropathy - progression - tipping point?

Postby Kobe » Tue Aug 15, 2017 9:48 am

So yesterday I had treatment 8 of Levocorin and 5-FU. Even though my counts were fine they talked about holding chemo a week to see it the neuropathy in my hands improved. It didn't make sense to me to hold it and they were comfortable with it so we did it. The plan is to see how the side effects are with this treatment and them decide whether or not to continue treatment. I'm happy to make it through 8. Being Stage 2 it was adjuvent therapy and the truth is no one knows for sure if I needed it or how many cycles are enough. I had one high risk factor which is why I did treatment but I also had a really low score the Oncotype DX (I know its not a perfect test). So now we wait and see.

It isn't hand foot syndrome - that pretty much disappeared with the dose reduction. It's neuropathy and the goal is to stop before it becomes permanent - it feels like Russian Roulette with each treatment. They told me dosing is completely based on height and weight (BMI) not taking into consideration sensitivity to medication or genetic considerations like how other direct family members reacted to chemo.

So this may be the last treatment .... or not.

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Moonbeams
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Re: Neuropathy - progression - tipping point?

Postby Moonbeams » Tue Aug 15, 2017 12:30 pm

My Father has had a bad reaction like that and it has gotten worse. Not sure what to do about it as it seems like nothing helps really.

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LPL
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Re: Neuropathy - progression - tipping point?

Postby LPL » Fri Sep 01, 2017 12:21 pm

Kobe,
I just want to say that I'm pleased to see you post again.
You asked me a question here viewtopic.php?f=1&t=58091&p=459968#p459968
After that no reply and I did not see you posting at all.
It made me worried and I sent a message, it is still unopened.
Lately I have taken a break so didn't see posts from you until today.
Never mind, just good to see you post.
All the best to you. /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
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4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
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:!: Steroid induced hyperglycemia dx after 3chemo
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Volfan
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Re: Neuropathy - progression - tipping point?

Postby Volfan » Fri Sep 01, 2017 1:17 pm

I will have to ask the doc next Tuesday about the neuropathy. I'm on Folfox and avastin and was under the impression oxi was what is causing the neuropathy.
If it's the 5fu that has me concerned. I don't have pain but I do have the tingling in fingers and feet. My index fingers and thumbs feel like they have calluses on them. And new after last treatment is I can lean my head forward and get a sensation in my feet.
These side effects are now lasting almost until the next treatment.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

benben
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Location: Washington State

Re: Neuropathy - progression - tipping point?

Postby benben » Fri Sep 01, 2017 5:13 pm

Oxi was dropped for me after 7 rounds.
Just did luecovorin and 5GFU for round 8.
4 more rounds of Luke and 5FU for me.

OXI is what causes the neuropathy. It was deemed based upon I'm experiencing more neuropathy in hands and now into the feet that I'd had enough based upon my low risk tumor factors.
I think they were also concerned about my long 14 weeks of neutropenia and the growth factors shots I'd been taking and the morphology of my platelets. But my Onc sighted mostly the neuropathy and based upon the recent ASCO report and his study of my tumor pathology he felt I'd had enough and that further treatments might create permanent neuropathy.

The hand foot syndrome can also induce tingling in the hands/feet - but mostly its a skin condition where the skin dries out and cracks.
I've had some dryness, but put on generous amounts of aquaphor to combat it at night.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)


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