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

ron50

unknown said:

This comment has been removed by the Moderator

Hugs Graci
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

ron50 said:

Hugs Graci
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.

Hi Ron
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

JoyceCanada said:

Hi Ron
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!!

hi joyce,
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

JoyceCanada said:

Hi Ron
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!!

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

ron50

JoyceCanada said:

Hi Ron
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!!

G,day Joyce
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

ron50 said:

G,day Joyce
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.

Hi Ron:
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

From the Full Article
I was DX at stage IV so I asked to be treated aggressively since my situation was serious and I didn't want to ****-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

PhillieG

unknown said:

This comment has been removed by the Moderator

Graci
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

pete43lost_at_sea

PhillieG said:

From the Full Article
I was DX at stage IV so I asked to be treated aggressively since my situation was serious and I didn't want to ****-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

onc misrepresent neuropathy severity and fail to mitagate
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

pete43lost_at_sea said:

onc misrepresent neuropathy severity and fail to mitagate
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

Thanks to all who gave
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.))

pete43lost_at_sea

janie1 said:

Thanks to all who gave
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.))

hi jaine1
the walking is my secret hope, the blood flow to the nerves. just a guess on my part, b ut whats wrong with hope. so glad all your sensations went away.

sorry you got to struggle to piece together your care, but in a sense you have learnt a
really valuable lesson. i certainly don't want to undermine anyome faith in their onc. that said its a big world, many onc's , many standards of care. not all treatments are equal. to me now you are in the driving seat for your health.

i have confidence in my treatments by taking actions myself and with great medical care.

having faith and walking will not hurt and i hope really help you. if its any relief i had about 2.5 glutamine a day in my powder for the last 4 months of my folfox and i am still here.

just goodluck. you are an inspiration, come and join our walking post , we would love to have you.

hugs,
pete

westie66

pete43lost_at_sea said:

hi jaine1
the walking is my secret hope, the blood flow to the nerves. just a guess on my part, b ut whats wrong with hope. so glad all your sensations went away.

sorry you got to struggle to piece together your care, but in a sense you have learnt a
really valuable lesson. i certainly don't want to undermine anyome faith in their onc. that said its a big world, many onc's , many standards of care. not all treatments are equal. to me now you are in the driving seat for your health.

i have confidence in my treatments by taking actions myself and with great medical care.

having faith and walking will not hurt and i hope really help you. if its any relief i had about 2.5 glutamine a day in my powder for the last 4 months of my folfox and i am still here.

just goodluck. you are an inspiration, come and join our walking post , we would love to have you.

hugs,
pete

Neuropathy Revisited
Hi Pete and Janie: See my new thread as this one is getting so long. It seems that neuropathy is the one fact of life when taking oxaliplatin (and 5FU?).
Cheryl