Looking for feedback

SophDan2

Hi All,

On August 30th I am scheduled to have the 7th of 12 treatments for my stage 3C colon cancer; the treatment is Folfox 5FU.  My concern all along has been to not get to the point of life long neuropathy. My concdern is, I am 10 days out from my last treatment and I still have sensitivity to cold, with the electric shock feeling. Is there anyone else that has had this experience, where they went for the next treatment still feeling the sensitivity to cold and as a result that feeling ended up never going away????

Thanks in advance for your feedback!

Barry

abrub

Ask about the oxaliplatin

That sensitivity to cold is from the Oxaliplatin.  Many people don't complete that drug (I had it for 5 of the 7 Folfox rounds I completed.  I couldn't get through 12.)  Ask your dr about cutting back or skipping it for your next treatment.  10 days seems like a long time.  It's certainly worth asking about.  Make sure your dr knows how long your side effects are lasting.

Annabelle41415

Yup

Sorry to say it was me.  After 5 rounds my hands and feet were constantly numb from one apponintment to the next and when asking the oncologist to lower the dose she came back with "it's only a minor nuisance."  Well that minor "nuisance" came with a permanent neuropathy and now I'm taking medication daily to deal with it.  They can reduce it and give you some relief.  Be very careful as this can become permanent.  It only states in the medical records (which doctors go by) that only 1% of people that take oxy is left with permanent neuropathy but that is totally false.  Hope you feel better soon.

Kim

SophDan2

abrub said:

Ask about the oxaliplatin

That sensitivity to cold is from the Oxaliplatin.  Many people don't complete that drug (I had it for 5 of the 7 Folfox rounds I completed.  I couldn't get through 12.)  Ask your dr about cutting back or skipping it for your next treatment.  10 days seems like a long time.  It's certainly worth asking about.  Make sure your dr knows how long your side effects are lasting.

Thanks, I will ask the doctor bout the Oxi on Tuesday

Thanks, I will ask the doctor bout the Oxi on Tuesday

SophDan2

Annabelle41415 said:

Yup

Sorry to say it was me.  After 5 rounds my hands and feet were constantly numb from one apponintment to the next and when asking the oncologist to lower the dose she came back with "it's only a minor nuisance."  Well that minor "nuisance" came with a permanent neuropathy and now I'm taking medication daily to deal with it.  They can reduce it and give you some relief.  Be very careful as this can become permanent.  It only states in the medical records (which doctors go by) that only 1% of people that take oxy is left with permanent neuropathy but that is totally false.  Hope you feel better soon.

Kim

Thanks Kim

As I said, I do not want to be left with a life long side effect. My thoughts are telling the doctor to reduce my chemo by 20% for this next treatment. I was told that they will only drop the percentages by 10% (and only twice = 20%). By the way I am feeling at this time, I think that I will stick to my guns on this one. 20% reduction for treatment #7 If the feeling does not lessen, before the next treatment I will not go for treament #8 and take my chances moving ahead with my life.

Thanks for your feedback.

abrub

PS - I have permanent neuropathy

Tho I thought mine was from the 5FU.  I don't have cold sensitivity, but I do have some pain and numbness in my feet and loss of fine motor skills in my hands.  At 9 years post-chemo, this won't be going away.

NHMike

It sounds like it's the oxi

It sounds like it's the oxi on the neuropathy from our small sample here. This makes sense to me as I'm only on 5FU and I don't have anything like neuropathy. My hands feel like they have a little less sensativity but I'm functionally able to do things that require dexterity. I do hope that Dan's doctor is responsive to his request. The question, though, was about the cold sensitivity with the response about neuropathy (they don't seem like the same thing to me).

 

Management of oxaliplatin-induced peripheral neuropathy (2004)

M Wasif Saif¹ and John Reardon²

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661634/

 

The current recommendations for the management of the acute and cumulative neurotoxicity from oxaliplatin include education about exposure to cold, dose modification, “stop and go”, and use of neuromodulatory agents, in particular, intravenous calcium and magnesium infusion. Upon the approval of oxaliplatin-based regimens both for adjuvant and metastatic treatment of colon cancer, it is crucial to compile knowledge about the recognition and management of neurotoxicity from oxaliplatin.

 

Oxaliplatin (Eloxatin®) from Oncolink

https://www.oncolink.org/cancer-treatment/chemotherapy/oncolink-rx/oxaliplatin-eloxatin-r

This medication can cause two types of neuropathy, which are caused by damage to nerves. The first type tends to occur within 1-2 days of receiving the medication, tends to resolve within 2 weeks, and can reoccur with subsequent doses. It can feel like a tingling or numbness (pins & needles) or burning in the hands, feet, area around the mouth, or in the throat. This neuropathy can be exacerbated by exposure to cold temperature or cold objects (drinking a cold drink can trigger a feeling of spasm in the throat, or touching a cold steering wheel could cause numbness or tingling of the hands). Avoid cold exposure for several days after treatment. Drink room temperature fluids and wear gloves and socks in cool weather.

The second type of neuropathy tends to develop after several doses, persists between treatments (no break in the symptoms), and can get progressively worse with additional doses of the medication. It is typically a numbness and tingling in the hands and/or feet in the area a glove or sock would cover. This can progress to be painful and can affect your ability to perform daily tasks safely (unable to sense temperature of bath water, cannot feel the step with your toe, becoming a fall risk). Patients may have changes in proprioception, which is the ability of the body to be aware of its position. For instance, you can button a shirt without looking because your fingers know how they are bending and moving to perform the task -- this is called proprioception. Without proprioception, your body would not be able to tell the position of the fingers without looking at them. These symptoms are caused by damage to the nerves in the hands and feet. This neuropathy may improve gradually over the months following the discontinuation of treatment, but can become permanent for some patients.

It would seem that the part about it becoming permanent applies to the hand and foot tingling/neuropathy and not the cold sensitivity but that's just my reading.

beaumontdave

I did the full twelve, had

I did the full twelve, had lingering side effects for a year and a half. The cold sensitivity went away first, then slowly the numbness and tingling subsided. Because I have a certain level of neuropathy from pre-existing muscular dystrophy,  I can't say with certainty whether all side effects went away or not, but I feel the same as I always have. Just giving my experience at the mild end of the scale.....................................Dave

ron50

I had none pof the platinum drugs

Just 5Fu and levamisole. A neurologist has dxed me with moderate to severe motor sensory periphera neuropathy of both feet legs and left hand. Ps He refused to treat me because he did not know what caused it. We did not part as friends. I suggested that with his lackof imagination he should not get into research.  My neuropathy has continued to slowly worsen to the point where I think it may be effecting the motility of my colon. Not a great prospect. Ron.

SophDan2

NHMike said:

It sounds like it's the oxi

It sounds like it's the oxi on the neuropathy from our small sample here. This makes sense to me as I'm only on 5FU and I don't have anything like neuropathy. My hands feel like they have a little less sensativity but I'm functionally able to do things that require dexterity. I do hope that Dan's doctor is responsive to his request. The question, though, was about the cold sensitivity with the response about neuropathy (they don't seem like the same thing to me).

 

Management of oxaliplatin-induced peripheral neuropathy (2004)

M Wasif Saif¹ and John Reardon²

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1661634/

 

The current recommendations for the management of the acute and cumulative neurotoxicity from oxaliplatin include education about exposure to cold, dose modification, “stop and go”, and use of neuromodulatory agents, in particular, intravenous calcium and magnesium infusion. Upon the approval of oxaliplatin-based regimens both for adjuvant and metastatic treatment of colon cancer, it is crucial to compile knowledge about the recognition and management of neurotoxicity from oxaliplatin.

 

Oxaliplatin (Eloxatin®) from Oncolink

https://www.oncolink.org/cancer-treatment/chemotherapy/oncolink-rx/oxaliplatin-eloxatin-r

This medication can cause two types of neuropathy, which are caused by damage to nerves. The first type tends to occur within 1-2 days of receiving the medication, tends to resolve within 2 weeks, and can reoccur with subsequent doses. It can feel like a tingling or numbness (pins & needles) or burning in the hands, feet, area around the mouth, or in the throat. This neuropathy can be exacerbated by exposure to cold temperature or cold objects (drinking a cold drink can trigger a feeling of spasm in the throat, or touching a cold steering wheel could cause numbness or tingling of the hands). Avoid cold exposure for several days after treatment. Drink room temperature fluids and wear gloves and socks in cool weather.

The second type of neuropathy tends to develop after several doses, persists between treatments (no break in the symptoms), and can get progressively worse with additional doses of the medication. It is typically a numbness and tingling in the hands and/or feet in the area a glove or sock would cover. This can progress to be painful and can affect your ability to perform daily tasks safely (unable to sense temperature of bath water, cannot feel the step with your toe, becoming a fall risk). Patients may have changes in proprioception, which is the ability of the body to be aware of its position. For instance, you can button a shirt without looking because your fingers know how they are bending and moving to perform the task -- this is called proprioception. Without proprioception, your body would not be able to tell the position of the fingers without looking at them. These symptoms are caused by damage to the nerves in the hands and feet. This neuropathy may improve gradually over the months following the discontinuation of treatment, but can become permanent for some patients.

It would seem that the part about it becoming permanent applies to the hand and foot tingling/neuropathy and not the cold sensitivity but that's just my reading.

Thanks for the links Mike

The 2 links you sent were very helpful.

 

Thanks again

SophDan2

ron50 said:

I had none pof the platinum drugs

Just 5Fu and levamisole. A neurologist has dxed me with moderate to severe motor sensory periphera neuropathy of both feet legs and left hand. Ps He refused to treat me because he did not know what caused it. We did not part as friends. I suggested that with his lackof imagination he should not get into research.  My neuropathy has continued to slowly worsen to the point where I think it may be effecting the motility of my colon. Not a great prospect. Ron.

Thx Ron

I am sorry that you did not have a good axperience with your Onc. But, the information which you have shared was very helpful to my current situation. I'll be meeting my Onc in less than 2 hours, to discuss any changes to my current treatment moving forward. I am scheduled to begin my 7th treatment tomorrow, and I am going to ask that my Oxi be decreased by 10% for number 7.