CSN Login
Members Online: 7

You are here

neuropathy good news and bad news DON'T READ THIS IF YOUR HEAD IS IN THE SAND!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Dear CRC friends,

Here I go again. Don't read this if you don't want to be frustrated about the truth of neuropathy re some pretty detailed research. the experiences of this board, are well a more accurate indicator of what to expect then our onc. Sadly I believe this seeing our comments and yes the implication that our neuropathy will get better one day just around the corner, oh if we live that long. The issues for survivorship in the bad news article is really well presented.

Cannot sleep, between loo visits I found these articles.

For existing suffers not good news, for people starting folfox some hope ?

Any comments ??????????

So lets start with some bad news. what the onc did not tell us !
Then lets finish with some good news. that our onc also did not tell us !
If you read these studies you may well want to ask some questions.
Please don't hold your breathe waiting for onc answers, as you may blackout waiting!

Yes my finger tips are numb while I type and I a going to ask about oral glutamine for the my stage of neuropathy.

hugs to all,
pete

BAD NEWS

Objectives. Oxaliplatin-induced neuropathy is a significant and dose-limiting toxicity that adversely affects quality of life. However, the long-term neurological sequelae have not been adequately described. The present study aimed to describe the natural history of oxaliplatin-induced neuropathy, using subjective and objective assessments.

Methods. From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008, 52.2% of the surviving patient cohort (n = 24) was available for follow-up at a median of 25 months post-oxaliplatin. Patients underwent a protocol that incorporated clinical assessment scales, patient questionnaires, standard electrodiagnostic assessments, and novel nerve excitability studies to precisely assess nerve function.

Results. At follow-up, 79.2% of patients reported residual neuropathic symptoms, with distal loss of pin-prick sensibility in 58.3% of patients and loss of vibration sensibility in 83.3% of patients. Symptom severity scores were significantly correlated with cumulative dose. There was no recovery of sensory action potential amplitudes in upper and lower limbs, consistent with persistent axonal sensory neuropathy. Sensory excitability parameters had not returned to baseline levels, suggesting persisting abnormalities in nerve function. The extent of excitability abnormalities during treatment was significantly correlated with clinical outcomes at follow-up.

Conclusions. These findings establish the persistence of subjective and objective deficits in oxaliplatin-treated patients post-oxaliplatin, suggesting that sensory neuropathy is a long-term outcome, thereby challenging the literature on the reversibility of oxaliplatin-induced neuropathy.

full article link below

http://theoncologist.alphamedpress.org/cgi/content/full/16/5/708

GOOD NEWS!!!!!

Oral Glutamine Is Effective for Preventing Oxaliplatin-Induced Neuropathy in Colorectal Cancer Patients
Wei-Shu Wanga,b, Jen-Kou Lina,c, Tzu-Chen Lina,c, Wei-Shone Chena,c, Jeng-Kae Jianga,c, Huann-Sheng Wanga,c, Tzeon-Jye Chioua,b, Jin-Hwang Liua,b, Chueh-Chuan Yena,b, Po-Min Chena,b
aNational Yang-Ming University School of Medicine, Taipei, Taiwan, Republic of China; bDivision of Oncology & Hematology, Department of Medicine, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China; cDivision of Colorectal Surgery, Department of Surgery, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China

Key Words. Colorectal carcinoma • Glutamine • Neuropathy • Oxaliplatin

Correspondence: Po-Min Chen, M.D., Ph.D., Division of Oncology & Hematology, Department of Medicine, Taipei Veterans General Hospital, Taipei, Taiwan, Republic of China. Telephone: 886-2-2875-7528; Fax: 886-2-2873-2184; e-mail: pmchen@vghtpe.gov.tw

Oxaliplatin is effective in the treatment of metastatic colorectal cancer (MCRC) patients; however, severe neurotoxicity develops frequently. To assess the efficacy of oral glutamine for preventing neuropathy induced by oxaliplatin, a pilot study was performed. A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled. Oxaliplatin (85 mg/m2, days 1 and 15) plus weekly bolus 5-fluorouracil (5-FU; 500 mg/m2) and folinic acid (FA; 20 mg/m2) on days 1, 8, and 15 were given every 28 days as first-line treatment. Patients were randomized to receive (glutamine group; n = 42) or not receive (control group; n = 44) glutamine (15 g twice a day for seven consecutive days every 2 weeks starting on the day of oxaliplatin infusion). Efficacy of chemotherapy, neurological toxicity, and electrophysiological alterations were assessed. A lower percentage of grade 1–2 peripheral neuropathy was observed in the glutamine group (16.7% versus 38.6%) after two cycles of treatment, and a significantly lower incidence of grade 3–4 neuropathy was noted in the glutamine group after four cycles (4.8% versus 18.2%) and six cycles (11.9% versus 31.8%). By adding glutamine, interference with activities of daily living was lower (16.7% versus 40.9%), and need for oxaliplatin dose reduction was lower (7.1% versus 27.3%). There were no significant between-group differences in response to chemotherapy (52.4% versus 47.8%), electrophysiological abnormalities, grade 3–4 non-neurological toxicities (26.2% versus 22.8%), or survival. These data indi-cate that oral glutamine significantly reduces the incidence and severity of peripheral neuropathy of MCRC patients receiving oxaliplatin without affecting response to chemotherapy and survival.

full article link below

http://theoncologist.alphamedpress.org/cgi/content/abstract/12/3/312

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

My head is never in the sand:)

For those starting out with Oxy, this may be a windfall. For those, like yourself, who have completed treatment and are going to try it, we'll have to see how you fare with it.

Luckily, I got off the train at #8 and was spared permanent neuropathy, minor but nothing major that I can tell. I know Magnesium Sulfate helped with my neuropathy and cold sensations and really turned my treatment program around.

I'm a quality of life guy and don't mind conceding a few things, but permanent nerve damage would have upset me to no end.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

thats where my head is.

hi craig,

glad you only got a little.

Thanks pete

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

And yes, as Craig can tell you, my head gets in the sand because it feels safe there on occasion, but he makes me pull my head up, stand strong and go on.
Winter Marie

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I often feel ostrich-sized on here but that doesn't really count.
Plus, my knees bend backwards, not forwards...

PS: The Madonna (as opposed to Madonna, will be back in the rotation at a later date)
-p

janie1
Posts: 753
Joined: Apr 2011

I was hoping glutamine was a solution to neuropathy, or whatever I am having with the numbness in my neck and jaw. It wasn't a good week. I am supposed to have another trt. tomorrow. Don't know what to do. Decrease the amt. and slow down infusion time is what I'm thinking to do, thanks to those suggestions. Last week I read about the glutamine for neuropathy, but there was something about "ammonia" building up or something, i hestitated to buy any. Can anyone clarify or simplify that study Pete sent....i am overloaded and can't think. Pete, would u take the glutamine now if you were on Folfox....i'm even confused about the amounts to take.
Also - I have a question. What over chemo drugs cause neuropathy, or is oxylaplatin the big one??? Thanks again for your knowledge and input.

janie1
Posts: 753
Joined: Apr 2011

Can u tell me how you took the magnesium sulfate? Seems like i searched that and there was something that stopped me. Seemed like there was some contraindication. Does it thin blood...is it like aspirin. Treatment is tomorrow and I am scrambling here :( It would be great to nip this in the butt sooner better than never. It's gonna be up to me, the onc won't be much help.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

They gave me "The Mags" by IV. I had never received it before but this day I was checking the labels on all of the bags hanging from the iv tree...I noticed one said Magnesium Sulfate.

The result was immediate for me. I could drink cold drinks w/ice the very night of the infusion. The tingling in my feet and fingertips got more bearable as well. I could grasp things cold for a few seconds instead of wearing gloves.

It does not work for everyone, but if you are the one of the ones that it does work for, it will really help you mentally and physically during the course of your treatment. It just puts a little more humanity back in your pocket, you know?

I cannot remember how long of a bag drop it is (length of infusion) and I believe they infused it separately from everything else. I believe I received this prior to the oxy infusion.

Many people I've talked to about this have said it worked for them as well. Sure won't hurt to talk to the onc about giving it a try...you should know pretty quickly from the first infusion if anything feels better for you. Probably will notice it more in your throat at first. The possibility of no more "room temp" drinks...worth a try? You bet!

-Craig

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

My only advice is to diarise all your issues and the full impact on your life.
And let your ONC, surgeon and everyone in your care team know how your are suffering.

Your question re glutamine and folfox would I take it ? well possibly not!
you see my numbness kicked in just recently. while on folfox life was actaully really good except for diarrhea. see my endless posts about it.

Now if I was having serious side effects and I found this info then I would certainly have begged the onc about glutamine. I doubt I would have gone against her advice, I have not so far. I did not realise how common glutamine is.

As I am on nothing now, no chemo, I am considering taking it, still researching. lots of input little knowledge, just my experience which is as unique as yours.

God I wished the road to recovery was not so hard, when we get our lives back, I am certainly going to care for this body with tlc and appreciate everyday. Numb feet and hands or not, partiaLLY WORKABLE BOWELS or not.

yes I will probably end up trying glutamine as I am desperate with this neuropathy.
I will wait till my liver numbers improve.

hugs,

Pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I know it works for me.
Let me know what you decide and how you are going.
Am I a one off freak who is lucky or does this stuff really help us ?

hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I know it works for me.
Let me know what you decide and how you are going.
Am I a one off freak who is lucky or does this stuff really help us ?
But as always check with your medical team about all supplements and treatments.

hugs,
pete

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi Pete et al: My neuropathy disappeared one day after my first cycle (not to stay however that it won't come back with more treatments). I am taking L-Glutamine but only 500 mg twice a day ( couldn't remember why I was taking it! now I know). I'll up the dose maybe but 15 g is a lot of pills. Perhaps I can get it in liquid form. I'm having more problems with the Irenotecan - constant liquid diarrhea - no nausea - which means I'm taking Imodium every 2 hrs. I'm very disturbed that the oncologists are making so light of the neuropathy side effects of oxaliplatin. Surely it is something the drug manufacturer must work on if so many patients are reporting this uncomfortable side effect. I have asked specifically but was told only one of his patients, the dentist, has had a serious problem with it. But then it is not commonly used here due to its expense. Thanks for the interesting information!
Cheryl

janie1
Posts: 753
Joined: Apr 2011

On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks

janie1
Posts: 753
Joined: Apr 2011

On my first post....i meant to say...What "other" chemo drugs cause neuropathy...or is oxyalaplatin the big one? thanks

coloCan
Posts: 1956
Joined: Oct 2009

from the doctors (father/son)Burzynski-some of what I've read doesn't make sense to me--, nevertheless, in the written transcript of the video of them with Dr Mercola at

mercola.fileburst.com/PDF/ExpertInterviewTranscripts/Interview-Drs-Burzynski-on-Cancer.pdf

see page 12 on what they say of glutamine, that it should be avoided (if taken, I think they mean, as an isolated supplement).... Don't know who is right here.

Myself-i clear everything I take with onc first (and have since added urologist to mixture, who has had me stop taking DHEA and creatine, which,except during Tx,I'd consumed for years.......)

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Janie,

There are a few chemo drugs with the metal platinum in it- oxaliplatin, cisplatin, carboplatin. Cisplatin and carboplatin are not normally used for colorectal cancer, but I had the "pleasure" of having 4 weeks of cisplatin when I was getting radiation on my rectal tumor. The cisplatin seemed even worse to me than the oxaliplatin in regards to neuropathy. That may be a cumulative effect, as I had 10 cycles of Folfox that has oxaliplatin and then a month later started the radiation with cisplatin. At the fourth week, the neuropathy was terrible and my onc changed it to carboplatin for the remaining two weeks & that was actually better. (I've since found out most oncs use 5FU during radiation & i have no idea why mine used the cisplatin/carboplatin).

I am now on Gemzar/5FU/Avastin. Gemzar (gemcitabine) is also a chemo that is not normally used for colorectal cancer (I believe it's for kidney cancer and some forms of breast cancer)- I'm on it because I've used up all the approved chemos for colorectal cancer and we had to find something else to put me on. Anyhow, I started having more neuropathy again since being on the Gemzar. I looked it up and it's supposed to be a rare side effect, but I'm getting it. So, I'm again taking glutamine, alpha lipoic acid, and vitamin B-6 to help combat the neuropathy.

The other approved chemos for colorectal cancer- irinotecan, Avastin, 5FU, Xeloda, Erbitux, Vectibix- I don't believe any of them should cause neuropathy.
Actually, I did experience some neuropathy while on Xeloda, but that's not due to the drug itself- it was due to severe peeling of my fingertips and feet (known as the hand-foot syndrome) & my nerves in my fingertips were affected because so much skin was peeled away. I then switched from Xeloda to 5FU (while taking them with Gemzar at the time) & the hand-foot syndrome got a little better & my feeling in the fingertips came back.

Lisa

Lifeisajourney
Posts: 217
Joined: Apr 2010

I am only telling of my experience because I believe some will always have serious neuropathy after folfox. I made it thru 7 and actually the neuro gets worst and I am two years from last infusion. I am interested in some of the things that others are taking and my onc acknowledged I had a severe reaction. But my feet thru ankles and hands to wrist have been affected and I even feel it in other parts of my body at times, but doable. I wish I had more knowledge before I took it to relay to the onc and ask about. So newbies do ask about some of these things.....and research before starting....Pat

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

You certainly have a gift for wording posts that start off in an insulting and/or confrontational way Pete...

Am I the only person on this site who has an oncologist who tells me what to expect with the protocols I've been on? The information you provide is yesterday's news for the most part. Have many of the members in the colon cancer forum NOT been told that they can expect (some) neuropathy from oxaliplatin? Also, were people not warned that it could be permanent? I certainly was told of the potential side effects of the drugs. I had neuropathy for a while but it got much better over time by itself. Probably not what usually happens of course but that is my case. Lest we forget, chemotherapy is used to KILL cancer cells and unfortunately, if you want to make an omelet you may have to crack a few eggs in order to make one.

Here are some recent numbers to put some of this into perspective.
The American Cancer Society's most recent estimates for the number of colorectal cancer cases in the United States are for 2011:
-101,700 new cases of colon cancer
-39,510 new cases of rectal cancer
So that's roughly 140,000 cases a year.

Under Bad News:
"From a population of 108 oxaliplatin-treated patients referred for neurological assessment in 2002–2008"
Under Good News:
"A total of 86 patients with MCRC treated at Taipei Veterans General Hospital were enrolled."
So that's roughly less than 200 people. That's really not a huge sampling of cancer patients IMO.

I am by no means saying that glutamine can not be helpful. Below is some information that is not just an abstract from a medical study. I hope that some of you find it helpful.
~source of my information
Neuropathy, Arthralgia, and Myalgia
Several small studies support that taking glutamine may reduce the occurrence and severity of neuropathy, arthralgia, and myalgia among people who are taking chemotherapy medications that can cause these side effects. Most of these studies are not randomized, controlled trials, so they only suggest glutamine can help, but do not prove it will work to prevent and manage neuropathy, arthralgia, and myalgia. On a positive note, glutamine has a very good record of safety. As long as a person does not have contraindications to using glutamine (see contraindications below), it is generally well tolerated and safe. When using glutamine to try to prevent and diminish the severity of these side effects, keep the following key points in mind:

The effective dose appears to be 10 grams of glutamine powder, dissolved in water, taken three times per day.
For best results, glutamine should be used both as a preventive treatment before neuropathy, arthralgia, and myalgia have developed, as well as after these symptoms have developed, to minimize the severity of these side effects.

Contraindications & Cautions for Glutamine
Glutamine is considered safe for use by most people for the duration of cancer care (chemotherapy and/or radiation therapy) in doses up to 40 grams per day. However, like all dietary supplements, glutamine is not appropriate for everyone. There are some people who should NOT use glutamine because it may interact negatively with existing health conditions or medications being used.

Do not use glutamine if you:
*Have kidney failure, kidney dysfunction, or if your kidney function is impaired or abnormal.
*Have liver failure, liver dysfunction, or if your liver function is impaired or abnormal.**
*Have ever been diagnosed with or had a period of hepatic encephalopathy (liver function that affects your mental, emotional, or cognitive state).
*Have a history of mental illness, especially bipolar depression (manic depression), mania, or hypomania.
*Have a history of seizure disorders, such as epilepsy or are taking medications to control a seizure disorder.
*Have a history of allergic reaction to monosodium glutamate (MSG), a flavoring agent sometimes used in the preparation of Chinese food in restaurants.
*Are taking or have been prescribed to take a medication called lactulose.

Some of these potential interactions are theoretical, which means they may occur, but are not proven to occur. For this reason, be sure to discuss your individual situation with your health care team before you use glutamine during cancer treatment. Glutamine is generally safe for most individuals with cancer, but only you and your doctor, working together, can decide if glutamine is safe for you.

One additional concern with glutamine is the quality of the product. Independent researchers have confirmed that some glutamine products do not contain the ingredients as claimed on the product label or may be contaminated with other ingredients. If you do use glutamine, go with a good quality, pharmaceutical grade product such as Glutasolve by Nestle Nutrition (formerly Novartis Nutrition), Sympt-X by Baxter Healthcare, or Dymatize Pro Line Glutamine.
~end
** many of us do have livers that have been affected.

Be well all...
-phil

janie1
Posts: 753
Joined: Apr 2011

Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

It's more of a proceed with caution. I don't think it's wise to jump into anything without knowing what can happen. I would HOPE your Onc would know, it is after all their job! I know what you mean about the reports. They are written by people for people who know how to decipher it. They can be like legal documents.

As with anything, especially things that are health oriented, ask questions and don't just figure "oh well, you're my doctor so you know best". They may or may not know best. You often have to be your own advocate. Be informed. I almost always had someone with me and I always came prepared with a list of questions. My doctors do take the time to answer them. I also know better than to ask them things that I know they can not answer like "how much longer do I have doc?" or "after this round will it all be gone?". You live until you die and it's gone when it's gone.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Where the heck is The Madonna?

janie1
Posts: 753
Joined: Apr 2011

Thanks for this info, too. As far as contraindications...i guess a liver would be abnormal if it has tumors, therefore glutamine would be a no-no. So people with liver mets shouldn't take. I never know how to take all the reports. I know my onc doesn't know.

Lifeisajourney
Posts: 217
Joined: Apr 2010

about folfox by 3 diffrent onc, at 3 different practices and different ages. Not the worse chemo, about coldness and touching, would not loss my hair, 12 cources, I was even offered a clinical trial as a Stage 111 which I refused. My point is that I did not research and did not know about this sight before I started treatment. So I believe if you are just starting, please do research and ask questions. Even if I had been told about the chances of neurapathy, I would have forged ahead.....now as I face a new stage 4 mets to liver, I am doing more research, but I still not sure the what the results will be. My husband is all rosy about the outcome, I tend to lean toward the what ifssssss......but we forge ahead a day at a time....and you can lose your hair and you can have neurapathy and lots of problems with the chemo. But I had two years with the problems and would do the same, but be more knowledgable.......Pat

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i to forged ahead, its just the lack of support after the event thats sad.
maybe let your husband be rosy,its better then him being sad.
hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

I just asked for comments ... and asked people to read if they want ... and to use the info as basis to ask any questions for their treatment.

we all have gifts and I appreciate mine and yours, in particular the info about avoiding glutamine products and liver damage which i was not aware of.

maybe we don't have to crack the eggs unnecessarily.

The point I got from the bad news article was the extent and impact of debilitating neuropathy many suffer. I am glad you were spared, i liked the detailed testing for the neuropathy, it sounded meticluous. these researchers are in Sydney and I will be calling them for any tips. I also liked the fact that onc appeared to under report the extent of the damage and its impact.

So I agreed without knowing the extent and likihood of permanent damage. the onc's say give it time, when the study implies time will not help. thats what got my attention and I thougth made it worthy to share here.

Suffering the side effects myself, looking for solutions myself, i come here for answers and advice. I put this up to generate feedback.

It maybe yesterdays news for some, but for me and a few others its new news and not really good. I just wanted to share it. PM me a different title if you want, I did not want to upset anyone else this time and I if people are leaving their heads in the sand then I suggest they skip this.

hugs,
Pete

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

I did 6 treatments of post op oxy, 8 treatments total, the last 2 without the oxy as the burning in my feet started to keep me from sleeping. My feet got much worse after I finished the treatments. It's been 2 months now and my feet are so sore every day. I just started to take nurontin it has helped a little but not much. I saw my ONC today and was told this could last a year and theres a chance it could be permanent. God I hope not!!!
It is very painfull and is preventing me from going for walks. I was walking during chemo and now I cant :(. I'm pretty sure I'm not going to die from foot pain and there is no evidence of cancer left in my body.........so if thats the price I pay to be alive I'll take it.
Love to all semi colons!!!
Tom

janie1
Posts: 753
Joined: Apr 2011

Thanks Craig, i will ask about "the Mags" in the morning. I'm getting tired of researching, so hope the dear onc knows about this, and can make a decision. Last week i talked to the chemo nurse about using a Cal-Mag infusion. She said they used to use that, but stopped, but didn't know why. She said she would call back, but didn't. Hope they know about the Mags. Seems like i always make suggestions, from what i get from all you fine people. Geezzzzz. Thanks so much.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry the neuropathy has hit you so bad.
hugs,
pete

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Like Craig, I got the mag sulfate from very beginning, my ability to drink cold things only progressed for me. First time it was 6 days, pretty soon it was 9 to 10 days before I could drink cold (for someone like me, who loves their frozen coke a colas this was devastating, however the weight loss from being denied my colas was nice).
I developed neuropathy in my finger tips and feet. It is gone from my fingers (thank you the Gods that be)in my feet were a different story, I have despaired because I didn't feel they would return to normal, however, the feeling is coming back almost full force at long last. Happy Dance with footsie's that are almost normal and as a post note (well, sort of a post note, I'm editing, LOL)I never had pain in the toes or feet, just tingling type numbness, I think the mag sulfate helped in this matter.
I consider myself one of the lucky ones!!!
Winter Marie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

i am glad you were lucky.
hugs,
pete

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

But 13 plus years on I can't feel my feet ,lower legs or left hand. I had 48 sessions of 5Fu and on 24 of those weeks I took 9 tablets of levamisole. Neither of these drugs is associated with peripheral neuropathy. My medical file states that my naturopathy is idiopathic which I believe means of an unknown cause. My rheumatologist is an ex oncologist and believes my neuropathy is definitely chemo related but he does not particularly care as he contends that once the sensory nerves are damaged sensation will not return. He has proved that by putting me on an increasing dose of lyrica,at 375mg daily it made little or no difference to the burning etc.He tried me on endep which is a tricyclic anti-depressant which also acts as a neurological anaelgesic. It did nothing except freak me out.
In my opinnion the treatment of cancer fails to provide a wholistic approach to patient welfare. The diagnosis is good ,the treatment is comprehensive but after five years nobody gives a toss. Iam curious if not surprised as to why no medical entity has asked the question 'Mouse 23 why are you still alive'. I was an aggressive stage 3c tumour into 6 lymph nodes and in the words of my surgeon "frightfully aggressive". I have had a lot of friends and acquaintences who were staged far lower than me who are no longer here.
I am not craving attention and I have had enough of doctors but if some medicos aked me to participate in tests that may help other sufferers I would be happy to. When I was treated with chemo neither my oncologist or surgeon thought it would work. Why has it.Perhaps I have a survival gene.
Apart from the why question I have to ask another. Having spent some much time ,effort and money on getting me to thirteen plus years why not put a little extra effort in to trying to stabalise my quality of life but honestly the attitude that I most find in doctors is you have survived cancer,what more do you expect. My answer to that is 'why did i @###$$$#@ bother. End of Vent.Ron.

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

Many folk on the H&N board use L -Glutamine for several reasons. It helps neutralize burning in the mouth from Radiation, helps heal the mucosa and helps maintain muscle tissue during weight loss.

I would assume that the 'healing the mucosa' aspect would be of interest to those here who have had surgery ??

It is commonly used by weight lifters/body builder in larger quantities. If you do decide to use it, the powder form is best and it dissolves in water or juice, and is tasteless. Very easy to include in your diet.

As for 'The Doctors should tell you', well I think we could fill dozens of boards on 'what the Doctors DID NOT tell us, and should have'.

If they don;t know and don;t tell what will/could happen regarding side effects and permanent damage from their work in any other industry, they would be fired, sued, or sent packing. This is endemic in the Cancer industry. One obvious reason is if you tell your new patient all the bad stuff, they will be very upset and also they may decided NOT to undergo treatment.

The more I study, the more I see alternatives and complimentary therapies that can be used to mitigate side effects and toxicity, increase efficacy of Chemo and radiation therapies, leaving us with better outcomes and quality of life. This is far far from a perfect science or art by any stretch.

Scam

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

your comments and support are priceless.
off to the weight lifting store.
hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi ron,
your story is brave and sad. its good to vent.
i fully agree with your comments re after care.
hugs,
pete

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

God forbid the cancer came, would you go through chemo again?

Btw apologise if you have answered this before, I've missed it.

Hugs

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi sonia,

i am sentimentally attached to our beautiful world.
my criticism with western onc is the lack of care managing side effects like liver damage and neuropathy.

hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

hi sonia,

i am sentimentally attached to our beautiful world.
my criticism with western onc is the lack of care managing side effects like liver damage and neuropathy.

hugs,
pete

BettyJoM's picture
BettyJoM
Posts: 86
Joined: May 2011

Right in the beginning my oncologist told me to start taking oral glutamine powder.
I bought several containers online but was unable to take it, it made me so sick to my stomach and increased my diarrhea. I gave it to the PA's at the cancer center so they could give it to other oncology patients because my onc prescribes it to all his patients on oxaliplatin.

During my treatments I had an appt with my Rheumatologist, who I visit for an auto immune syndrome I have called CREST syndrome. He also was thinking I may have some carpal tunnel syndrome which may be exacerbating the numbness in my hands, so he ordered an EMG.

The doctor who did the EMG found no carpal tunnel but he told me he had just heard about a study done on the effects of oxaliplatin and the use of vitamin E. He said it had good results with 1000iu a day. I mentioned it to my oncologist and he was unaware of that but told me to take it if I wanted.
He also said for me to take 2 Caltrate and 2 81mg aspirin a day, that this was proven to improve odds for cancer returning.

How can a person know what the heck to take already. Today is easy. Fasting since yesterday for a colonoscopy tomorrow. I will just be happy to get some food

Betty Jo

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Hi Betty

Your news is wonderful in a sense that at least some oncs are trying to help us.
You have one opened minded and caring ONC.
Sorry you could not stomach oral glutamine.

I have just discovered some amazing news for my own treatment. I feel a little foolish but more lucky than foolish. I am so glad I have a great naturopath.

In all the supplements I take, one little powder by nutrition care called GUT RELIEF for intestinal health with cumerone.

since chemo finsihed 5 weeks ago, I have backed off my diarrhea remedies as my gut has been better and I have been at first camping and then in hospital for the reversal. so my supplement regime failed a little here and there.

my neuropathy was getting better, then it suddenly started getting much worse during my hospital visit as I went off all supplements. So now it turns out that my wonderful gut relief powder has been giving me L-glutamine and curcumin for the last 5 months since I started with the naturopath. that means I have been actually also having a good source of tumeric while on folfox to enhance its effectiveness. I have also been getting a source of l-glutamine and I suspect this has helped keep my neuropathy at bay without me realising it.

I can guarantee my neuropathy has gotten so much worse over the last few weeks to the extent I can hardly do up my son school uniform buttons. And now co-incidentally since I drop using this product. Needless to say I have just had a 5gram serve ande will have a couple a day for the next week and see.

I had felt the worsening neuropathy was unavoidable and that my goodluck had ran out. Luckily in the hours I have spent contemplating my treatments and supplements as I am housebound ( actually loo bound at present ) has enabled me to reflect on my symptoms that are so disturbing. The next few weeks to see if my neuropathy improves as I take this supplement with an open mind and hope.

remember in a three week period going from hardly any neuropathy to really terrible neuropathy. My onc never prescribed cal/mag or glutamine as its not the standard here. I am so glad I have looked outside the box and had significant benefits I attribute to great naturopathic advice.

The details of gut releif powder are below and I am so grateful I have been taking this product. so earlier in this post I said no to taking l-glutamine while on folfox, when in fact I could have said yes i did , but I did not know.

goodluck with your colonoscopy tomorrow.

hugs,
pete

http://www.purehealthdirect.com/products/products_details.php?products_id=2376
Active Ingredients in Gut Relief by Nutrition Care
Ingredient Qty
Aloe barbadensis .5 mg/g
Curcumin .6074 mg/g
Glucosamine hydrochloride 100 mg/g
Glutamine 500 mg/g
Guar Gum 20 mg/g
Pectin 20 mg/g
Peppermint Oil 600 microgram/g
Quercetin 40 mg/g
Sodium phosphate - dibasic 52 mg/g
Ulmus rubra 100 mg/g

Specific Indications for Gut Relief by Nutrition Care
Aids in maintenance and repair of mucous membranes

Natural relief of symptoms of medically diagnosed irritable bowel syndrome and natural relief for the bloating, abdominal pain, cramping and discomfort associated with irritable bowel syndrome

Relief of muscular aches and pains in the gut
Soothe and protect the gastro intestinal tract
Suitable for assisting upper and lower gastro intestinal health
Supports gastro intestinal health
Warnings (TGA) for Gut Relief by Nutrition Care

Anonymous user (not verified)

This comment has been removed by the Moderator

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

so sorry my posts bring your frustrations to the fore.
maybe some luck friends here will learn from all our experiences.
yes 07 studies and not much else. no money in l glutamine i suspect.

I always appreciate your comments.

hugs and love,
pete

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

I had 48 doses of 5fu,every tuesday,It was given per body weight and I am a big bloke so I had quite a lot of it. I was never in doubt about the dangers of the stuff. My oncologist defended the use of chemo by telling me íf we find something that kills ca without killing the patient,we are obliged to use it. We know the cancer will kill you.
I accept that. His biggest worry with 5fu was damage to the cerebellum.He warned me if I started to get dizzy he would stop the 5fu. Now 13 years later i suffer badly from vertigo. Is it related ,who knows. My other chemo drug was levamisole. My rheumatologist refers to it as that awful stuff. It is a vetrinary anti-parasitic. I figure anything designed to kill parasitic worms and flukes in large animals has to be pretty deadly stuff. I know that the weeks I was on it were really bad.
I take plenty of supplements including cal vit d,a and magnesium as well as omega 3 as fish oil caps. It is funny how things can bite you on the butt. I was taking 6 fish oil caps a day ,3 morning and night,they were making my vertigo ten times worse. I was having falls every second week. Now I take two a day and I have not had a fall for weeks. Life has become like walking a tightrope.
I never had any of the modern chemo drugs like oxi etc. My docs are of the opinnion that my neuropathy may well be a secondary result of the chemo. The primary result being severe reactive psoriatic arthritis. The arthritis may be causing the nerve damage or it could be some form of associated vasculitis effecting my nerves and kidneys.Unfortunately some of the arthritis meds make chemo look like a walk in the park. In a few weeks i start on imuran,a frontline anti-rejection drug. I'm not looking forward to it but at the moment I'm not on anything.When I get up in the morning my hands will only half close,it takes half an hour before I can make a fist. It's getting mighty hard to hang on to a screwdriver. I hope your breathing improves. It is really scary not being able to suck in a breath. take care on those blood thinners .Any small injury can become serious. Thanks for caring,Hugs Ron.

JoyceCanada's picture
JoyceCanada
Posts: 134
Joined: Mar 2006

I'm 5 years out from Stage III rectal cancer. 28 rounds of radiation with continuous 5FU and 8 rounds of FOLFOX. I am left with severe neuropathy in my feet, damaged kidneys (CKD) and recently I have been diagnosed with Chronic Lymphocytic leukemia.

My Oncologist said........."sorry, you are the unlucky one to get all the nasty side-effects"
I say .....You didn't kill me you CURED me. Chemo is a 2 edged sword!!

Yah have to do what you have to do!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

my god you were unlucky. did your onc or you try anything to get help for neuropathy ?
yes its a two edged sword, but if its handled well the side can be better.
hope things improve,

hugs,
pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

you are so tough mate. it breaks my heart to read of
your side effects.
hugs,
pete

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

My onc did tell me that leukemia was a very rare side effect of 5fu. He had not seen it but he was aware of it and i had blood tests every two weeks. For some reason my counts never alterred the whole time i was on chemo. I am very sorry your road to recovery has been so rocky ,you have my deepest sympathy for what you are going thru. Ps I may need another kidney biopsy in a couple of weeks,how I hate them,Hugs Ron.

JoyceCanada's picture
JoyceCanada
Posts: 134
Joined: Mar 2006

When I was going through chemo my blood work was "stellar". I only missed one scheduled treatment for low counts and my counts rebounded without the aid of meds within a week. The leukemia was discovered by my GP when I went in for a routine check two years ago. There is some question as to the leukemia being caused by the Chemo for the rectal cancer, however the kidney damage was definitely caused by Oxiliplatin. My neuphrologist says that platinum based drugs are "notorious" for causing kidney damage and the prep for colonoscopy and CT scans are also very hard on the kidneys.
I was given phospho-soda as a colonoscopy prep and there is a class action against the manufacturers because of kidney damage.
My advice is.........remember to drink lots of water to "flush" the kidneys during treatment.

The leukemia is "bad luck"...CLL is very common after the age of 60. CLL has many stages and I am hoping that I can hold off as long as possible before I have to go through Chemo again.

I DO NOT WANT TO SCARE ANYONE.........YOU DO WHAT YOU HAVE TO DO.....I AM 5 YEARS CLEAR OF COLONRECTAL......I'M DOING O'K.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm sorry to hear about your experiences with those people. They'll let anyone be a doctor, whether they are good or bad. I think they should have to get re-certified or something so they all have up-to-date information. You shouldn't have to educate your doctor but that seems to be the case all too often. My first Onc was an idiot. He had been my PCP for 10 years and went yearly for checkups and he didn't catch it until I was stage IV. He then went on to say there's no hurry to get a port or start chemo. I said "later..."

I was lucky to be living in the NYC area too, there are many great facilities around here. I paid out of pocket for my Onc at Sloan for about 6 months since they were not in my network with insurance. I had another great Onc who let the one from Sloan call the shots and he followed her advice. As it turned out, he would have done the same thing. The more I read on here the more I realize I am lucky. As the commercials on TV say about Sloan Kettering say "Where you are treated first can make all of the difference". I think that's very true.
My best to you
-phil

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I was DX at stage IV so I asked to be treated aggressively since my situation was serious and I didn't want to pussy-foot around. My oncologist's past experience showed that the FOLFOX with a side order of oxy gave me the best chances so I went for it. The sensitivity to cold sucked but that was one egg that needed to be cracked. It was a small price to pay for my end result.

I can only base things on my experience. We all have different levels of tolerance as far as pain and inconvenience go. Likewise, we all have different levels of the side effects too. I realize that some people have it bad, and that ain't good (as the song goes)

The thing with putting up information (like an abstract) is that often only a part of the story comes out or it's written so it's difficult to understand for the average person. Glutamine can help some people with the side effects. That was from a study of less than 200 people out of hundreds of people who currently have colorectal cancers. Maybe if they sampled 200,000 people, 90% would have similar results. Maybe if they sampled 200,000 people 1% would have those results.

Here's the Omelet:
"Oxaliplatin is effective in the treatment of metastatic colorectal cancer (MCRC) patients;"
Here's an egg:
"however, severe neurotoxicity develops frequently."

From the Full article:
"Oxaliplatin, a new cytotoxic agent from the diaminocyclohexane platinum family, exerts its cytotoxic effects through the formation of DNA adducts that block both DNA replication and transcription in actively dividing cells [1]. In combination with 5-fluorouracil (5-FU) and folinic acid (FA), oxaliplatin is effective in first-line as well as salvage therapy of metastatic colorectal cancer (MCRC) patients [2, 3]. Furthermore, the combination of oxaliplatin and 5-FU/FA has been proven to be beneficial in enabling surgical removal of previously unresectable liver metastases [4]. In an adjuvant setting for stage II/III CRC patients, oxaliplatin plus 5-FU/FA significantly improved disease-free survival"

This appears to be some really impressive positive results from using oxaliplatin.
It goes on to say:
"Neurotoxicity is the principal and dose-limiting toxicity of oxaliplatin and the incidence of oxaliplatin-induced severe neurotoxicity has varied from 12% (Multicenter International Study of Oxaliplatin/5-FU/FA in the Adjuvant Treatment of Colon Cancer, MOSAIC) to 17% (Capecitabine plus Oxaliplatin, XELOX) to 18% (Optimized 5-FU-Oxaliplatin Strategy 1, OPTIMOX1) in different clinical trials."
In a perfect world there would be no cancer at all. But here we are...
The above statement appears to say that less than 1 in 5 have severe neurotoxicity. The first stat is about 1 in 9. Of course, ANY adverse effects suck but if you want to weigh the effectiveness with the chance of the side effect being very severe, it seems rather low considering that if nothing was done the chances of survival might not even be as good as 1 in 9.

Next comes:
"Oxaliplatin-induced neuropathy can be divided into two distinct syndromes. The first one is a unique syndrome of acute, transient peripheral nerve hyperexcitability occurring shortly after the infusion of oxaliplatin. Oxaliplatin is the only platinum complex to produce this form of neuropathy [8]. This form of neuropathy usually occurs at low total cumulative doses and could be triggered or exacerbated by exposure to cold. Patients may experience paresthesias and dysesthesias of the hands and feet, as well as larynx and jaw. These symptoms usually occur within hours of exposure and are reversible over the following hours and days; they generally do not require discontinuation of treatment "
And:
"The second syndrome is a peripheral sensory neuropathy occurring mainly in the distal extremities with symptoms similar to those caused by cisplatin [9]. Development of this form of neuropathy is correlated with the cumulative dose of oxaliplatin. It may last for several months, results in a severe disturbance of neurologic function, and has a significant impact on oxaliplatin treatment".
I am truly sorry for those who have the very serious side effects that CAN happen. Pete, I'm sorry you have the side effects that you do have but I really think you are misrepresenting the actual article you refer to.

As far as the beginning of the post saying "The issues for survivorship in the bad news article is really well presented." goes, I guess I missed the "bad news" part. I guess it's that the "Oxaliplatin is effective in the treatment of metastatic colorectal cancer (MCRC) patients"?

We have Oxaliplatin to work with, I think that's good news. Being dead would be bad news...
Enjoy breakfast,
;-)
-phil

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

Conclusions. These findings establish the persistence of subjective and objective deficits in oxaliplatin-treated patients post-oxaliplatin, suggesting that sensory neuropathy is a long-term outcome, thereby challenging the literature on the reversibility of oxaliplatin-induced neuropathy. this is new info, its bad news, see everyones persistent problems. were we given informed consent. my answer no, of course i would still have done folfox YES. but if i had been advised about serious sides i would have researched more, i would have pushed for cal/mag during infusion. i did not know and could not piush. info is power for the concerned patient. this is a real issue look at tom, gail, me etc etc

i just asked for comments and appreciate yours and everyones perspective. i don't see how if have misrepresented anything. pm me if you want, i'd rather discuss this offline than have some big posting argument. life is to precious to fight so just represent your opinion and leave it. which is all i have done after all.

but phil did you see in this post how many people are taking l-glutamine, its reasonably wide spread. if we don't scream about our side effects, if we leave our heads in the sand then our onc will continue to ignore our suffering. this post backups this approach.

what was my 12 rounds of cal/mag going to cost me ? i would have paid it myself to reduce what i experience as neuropathy even if it was 1% improvement. I WAS NOT GIVEN THE OPTION. i don't want this for life. many stage3 get oxy for say the 15% survival benefit and a few are left with life long horrible side effects with we may have been able to prevent. we are being robbed of the prevention window, its too late after the damage is done. that my biggest complaint.

maybe i am venting my frustration at our medical system, not you, i am glad your oxy helped and you side effects are ok and that you are here.

hugs,
pete

janie1
Posts: 753
Joined: Apr 2011

Thanks to all who gave suggestions on my jaw and neck numbness (neuropathy?). I won't name all of you, but I do appreciate your time. I asked for the The Cal-Mag. I got it, i think. They said they really don't use that anymore, the doctor said ok to use it but wasn't sure if they had some onsite. Well, they gave it IV....and I hope it wasn't just saline (my trust in people is not very good these days). The problem didn't improve, I can't say it's worse though either. I've been walking 3-5 miles a day, and my feet are fine, but maybe the neuropathy had to go somewhere and it chose my neck. I'm trying accupunture tomorrow. I'm adding small amt. of glutamine (scared of too high of doses of anything). I think it was Betty Jo's onc who recommended glutamine. So refreshing to hear doctors talking about those things. Not mine. He doesn't want to hear it.
(( This is about the only suggestion I have so far, if maybe it will help someone new to this. Usually for a day or two, after chemo (and the oxaliplatin), I can barely walk, lower legs numb, can't feel feet, spasms in calves. I just keep on walking at least a quarter of a mile or longer, and all those sensations goes away.))

Pages

Subscribe to Comments for "neuropathy good news and bad news DON'T READ THIS IF YOUR HEAD IS IN THE SAND!!"