• CIPN

    Asked by knightwingfire on Saturday, October 27, 2018

    CIPN

    Chemically Induced Peripheral Neuropathy. OR CIPM as its shortened to is the curse of Chemo therapy. Mine I have no concept of How painful;; it can become . WE have to discuss that.
    HOW [aimful is CIP{N And HOW you treated it. I am Open to try any treatment as Even on my pain program that works on Nerve pain cannot reach an Acceptable,???? lets gang up on this
    I tried Topical creams and MAX T3 + Gabapentin At mad dose , I am Still in the same pain . 5% lidocaine 20 % lidocaine 1-7u%DICLOPHEN ?8% Gabapentin . Blended to a smooth paste. By A stirring then settling for 30 days. its Effectiveness varies over the rest period form perceive able NOTE LIDO WAS 4 t6imes max allowable . little or no long term valuable

    14 Answers from the Community

    14 answers
    • po18guy's Avatar
      po18guy

      Sadly, but realistically, everything we experience must be balanced against succumbing to the cancer. We are all damaged goods post-treatment. The neuropathy in my hands has improved over the 10 years that have passed. The more you use your hands and feet, perhaps the more healing or regeneration occurs. That seems to be the case with my hands. My feet, not so much. However, I am now building on CIPN with diabetic neuropathy, which has made my feet worse than before. What to do?

      There is precious little we can do for ourselves at this point - but there is something that we can do for others and for the next generation: participate in clinical trials. Each new drug that is in trial is 1) less toxic, 2) more effective or both, as compared to existing drugs. If we have the need via relapse, or maintenance against an indolent cancer, I strongly encourage fellow patients to consider clinical trials.

      I am here solely because of a single clinical trial that opened exactly when I needed it to. Had it not been available, 2009 would have been my last year shuffling along on this earth. As to the damage done by the increasingly obsolete chemotherapy, we can only be confident that the situation is improving.

      As to our displeasure, I note here that we must be alive to have complaints.

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Luckily, my neuropathy isn't that bad, I can kill it back with some mild pain relievers and muscle relaxers at night. I wish you the best in search for a solution.

      over 2 years ago
    • wolfinindy's Avatar
      wolfinindy

      Marijuana / CBD oil. Take a look at this website..... www.foundationforpn.org

      over 2 years ago
    • myb's Avatar
      myb

      I tried 300mg of Gabapentin at bedtime and was a zombie, yet 100mg did nothing. I am on 600mg of alpha lipoic acid which I started during chemo for hand & calf cramping which I am still taking. I tried various b vitamins with no success. Acupuncture works the best but is only a short term relief for me. I did not start acupuncture till 1.5 years after chemo ended and CIPN started. Maybe if I started sooner, there may have been more long term relief.

      over 2 years ago
    • knightwingfire's Avatar
      knightwingfire

      I will answer all of your suggestions and Thanks for ALL of your Options. Yes its A trade off on this issue . Cancer or CIPN Certainly the Cancer remissions or NON traceable levels We have from the Chemo etc. is the PRIME Devil to destroy. We are the Clinical trials and for many Decades to come Cancer Sufferers will remain as Cancer Test Dummies. Its So hard to KILL what is already DEAD. Its now HOW do we repair and Lessen the CIPN.
      Exercise . IS also my #1 line of Defense I omitted it as I have felt it was just a temporary issue. So far it is Far ahead of Any known Pain Medication

      2/ Gabapentin will only make you tired and Zombie like When used with OXYCODONE or LIKE Opiate for the first month. Lessening after 14 days to non perceptible Above the OPIATE alone. Its mentioned in the Monogram on Gabapentin to EXPECT this. I am on 3600mgs per day It never has made me even slightly drowsy. however I have not taken anything stronger than a T3 since 2007 and I have been on T3 since 1968 I have a long history of 15 of 24 broken vertebra. To me T3 is the strongest I personally need. I have serious severed Nerve root issues MY Tri Germinal Nerve was severed totally and had to have more than 4 inches removed YES stripped from my GUM and LOW CHEEK after a Motorcycle incident in 1968. That makes my worst CIPN seem like a walk in the park. Its right up there begging for a Final KO punch from medicine. I dont have to walk on my face and that makes the CIPN my concern today. Walking is very difficult. And makes my days seem like Years.
      My Exercise is cycling and that places the Pressure Direct on my Metatarsal Nerve the most Damaged It subsides for a while but returns Perhaps not as intense But it does SEEM better. Someone else reporting on the benefit of Exercise and IMPACT PRESSURE against the Damaged Nerves is Effective . Thus Exercise is TOP of my list to Up the intensity.

      over 2 years ago
    • myb's Avatar
      myb

      I tried to get back into my Nordic Track for exercise, but that was just the worse option with the toe strap and pain would radiate up my leg. Walking is it with my max about 3 miles before feet start screaming. Yoga works best when I belonged to gym.

      over 2 years ago
    • knightwingfire's Avatar
      knightwingfire

      Why does Gabapentin NOT work for me . Ive been on 3600 MG per day of G for many years and its been part of my Pain Program since[phone number redacted] at the MAX dose allowable. I did for 5 days reach 4800 but with no change . At 3600 I was treating TGN (Severed and removed form the low Face ) Pain. Damaged C spinal Chord Pain, Damaged L Spine Pain trapped Nerves a L 5 S1. Other pain and treating this helps NON NEURAL PAINS by reducing inflammation. It has a tolerance of +/- 400 mg per day. All these bring on a headache from the suburbs of XXX. Consequently I masked the ONSET of the CIPN enough MY Chemo was continued for 1 or 2 treatments too LONG. Despite that I an Clear of Any Cancer. For that I am thankful. Its probably would have been wise to find a substitute for the Chemo period for Gabapentin. That is Oncologist Read this I hope they ASK AND ADVISE their patients to discuss with the Doctors who know what to do.

      MY use of topicals has not yet been abandoned. I am going to ADD some High Concentration of Capsaicin to my already powerful Cream but not yet effective.

      Returning to the Gabapentin 300 MG /day is very Low it comes in 100, 200, 300, 400, and 800 mg Capsules Caplets, It has a half life on about 4 hours thus ONE per 8 hours is the minimum dose that will help anyone. By starting at 100 3X per day the Drowsy issues are minimized
      typical Doses will be from 1200 to 3600 Mg per day. by the time you get to 1200, your brain should have Acclimated to its Effects. Nerve pain Ie damaged Nerves contrary to Muscular skeletal Pain is AKIN to a SUPER FLOOD compared to a Leaky Faucet dripping 10 times per
      hour. SHINGLES is a Neurological pain and anyone who has had shingles can attest to its Unlike the worst pain they have ever known or want to experience even for a few seconds. until you have damaged a nerve you have no concept of pain. When We hurt yourself the Local nerve sent the message to the brain VIA A Chain of Nerve fibers and a CHEMICAL CALLED ACETYL CHOLINE this is also correct when we wish to move an arm and or leg etc. the volume of this chemical is metered depending On the Perception of IMPORTANCE. Imagine the Nerve Fiber as a Chain the individual links joined by the Chemical the flow is normal at rest If you spill milk on to your hand the Chain gets an increase in flow call that a thickening of the LINK plates. a burn will thicken them more however IF you Damage a Nerve The Brain side of the Nerves Sends a flow that essentially overwhelms the Ability of the nerves to COMMUNICATE ANYTHING ELSE the PLATES HAVE BECOME a Solid Bar. the Flow is beyond Capacity The Flow Cannot stop there is NO known Methods to DAM UP this Chemical. IN Fact No where in the world has a Drug been approved to Control such a pain.

      Epileptic Seizures are however caused by a similar Flow of Chemical OVER a short distance thus its the knockout punch for the Victim. They succumb to a Seizure. Gabapentin is an ANTI Seizure medication Not a PAIN medication ALONE it will not have any Effect on pain It requires a PAIN medication to become a pain formulate into an adjunct to Pain Control. But Seizures and the Pain created from a trapped or severed Nerve Root or billions of nerve endings. has the SAME chemical imbalance IE a FLOOD of ACh (Acetyl Choline) except this flood has moderated with DISTANCE traveled from my neck to the Brain NOT BRAIN TO BRAIN . I am not put into a Seizure, simply so much pain OPIATES have no effect on it. Gabapentin Again is NOT A pain killer and thus will never be approved as such . OPIATES ARE not Neural Blockers and will never be Approved as SUCH. Combined however and the Gabapentin can Be a SERIOUS PAIN CONTROL AGENT and the OPIARE can become a great NEURAL blocker at very low doses. PLEAS UNDERSTAND ALONE NEITHER WILL DO EITHER. its a matter of Finding a Balance for each person. Few Doctors understand the concept of chemical Synergy and Far too many Do not comprehend the Dangers OF Negative Chemical Reactions between Medications . Consequently Overdose situation arise form persons taking the wrong Combinations Of Drugs . OR the WRONG OPIATE with A NEURAR Blocker. When I first Broke C1 to 7 in a fall . I was on Gabapentin 3600 MG and needed to Add a more powerful OPIAT to the Codeine OK as it was severe and C2/3 and 3/4 compromised Disks as well Give Peter Some OXYCODONE. Peter returns complaining its doesn't help UP My OXY DOSE and so it went until I had maxed the OXY as well . I returned to T3 at moderately higher dose than previous and WOW it KO'ed the pain. It needed a change but only up from 1 4 times daily to 2 3 times daily of a mild OPIATE.

      The OPIATE allowed the appropriate receptors to occupy the correct spaces etc.

      Gabapentin is the correct choice and with few negative side effects tiredness being the rime one, its turned to But All too often its Prescribed ALONE and Is USELESS. You may resolve the Brain's recognition of the flood but not the local Muscular Skeletal sensation of the pain.

      The second Pain . OF the nerve pain.

      I hope that has helped Doctors and Patients understand the Concept of a Neuro Epileptic as a Pain Moderator BTW no medication WILL KILL PAIN.
      ALSO THE person who responded re the Drowsy issue try again give it time at 300 / day and then move up slowly Obviously you do not have m tolerance to Chemicals and we are all Very different Try 2 to 4 T3 per say and ease up on the gabapentin if your On POTENT OPIATES already . You have the answer Above. try cutting back on the Opiate and Go up on the Gabapentin .
      The 2 are not happy if in the wrong ratio.

      I have the advantage of having a Mother WHO was a PHARMACOLOGIST I am A Retired Chemical Engineer. Who used to dip my arms in solutions of Arsenic and other Heavy Metals.

      over 2 years ago
    • knightwingfire's Avatar
      knightwingfire

      TOP of the list so far= AGREED EXERCISE.

      over 2 years ago
    • knightwingfire's Avatar
      knightwingfire

      NORDIC TRACKS .INDOOR CYCLE'S.

      NOT my choice Of equipment as the costs are WAY too high and Benefits too low. But We are told they are Good and DO give results just not to the level I would require from a RACE cyclist.
      I am A cycling coach Again retired MY passion is cycling unfortunately My Balance has Gone and ROAD cycling is not a Current OPTION. I have used CLIPLESS PEDDLES since they were a cycling accessory thy have the advantage BUT WILL SOON Become one more. Of ridding the Bike of TOE clips that can Catch on Obstacles if not used and P{inched your toes when not adjusted correctly. Clipless peddles rid us of that Issue. Exercise Equipment Stationary Bikes Elliptical's Have NASTY LONG Peddle ARMS 180 mm that's 10 MM too long for anyone Over 5Ft 7 tall. and other's who fall between 3'11' and 5'7 need even shorter CRANKS 145-165 mm. Clipless require Shoes and A cleat to function. They make Cycling much more enjoyable BUT IMPOSSIBLE if you have Critically short legs like my own. I cannot sit on the seat of a BIKE with Cranks that are too long and TOO short.. Precise saddle adjustment is needed for short lengths and Lone ones IMPOSSIBLE. 170 is standard. 175 Long 180 IMPROBABLE that more than 5 % of the population can use. Typical on the Elliptical's Ive seen in Gyms. IF you have ODD length legs Clipless peddles Can Damage your Spine. SO its ALL in how your Equipment FITS YOU. ONE size is Wrong for ANY ONE. For your Elliptical Spend the extra #250 on shoes and Peddles to GO clipless. You will get more exercise benefit Form the Machine as you stand over it not sit over it. you can put more POWER to the PEDDLE. ALSO if your CIPN is in your FEET its IN the METATARSAM nerves ( between the toes and the ARCH not the ARCH, never apply pressure to your ARCHES!! Pressing on the Metatarsal Wil help your pain. Cycling Shoes have a RIGID SOLE so rigid you should not be able to flex then more than 1/4 inch over the full length. They are Fiberglass to Carbone fiber the less expensive ones are RIGHD plastics. Adequate for an elliptical. Get rid of the Toe Straps I can Feel your Pain between my Big toe and next toe its hurting thinking about you. That Elliptical Cost about[phone number redacted] its worth the small investment in being able to use it Once more. Peddles $170 Shoes $100 to $1500, Cleats come with the peddles. GO to ANY HIGH END CYCLE STORE the CHEAP under $2000 Bargain BIKE store wont understand what you need. They barely know the front from the rear wheel. Have the store Person assemble the Cleats to your shoes as ALIGNMENT IS critical . IF you cycle you can swap then to your Bike when you want to Go for a ride. Do not get a AN INDOOR Cycle MACHINE its far bgetter to Get a Cheap used Bike and Mount iiit on a Good Indoor Bike track stand. for 1/3 the cost you can get 5 times the Cardio workout and benefit.

      over 2 years ago
    • JaneA's Avatar
      JaneA

      Sometimes an older type of antidepressant helps too - either Elavil or Pamelor.

      over 2 years ago
    • Skyemberr's Avatar
      Skyemberr

      If should be started here that if you are getting increasing peripheral neuropathy during cheeks like FOLFOX, you need to tell your chemo nurse and oncologist right away!

      The neuropathy can bee a sign that the chemo is functioning as a neurotoxin and it can kill you at a certain level. I'm not saying that was the case in the case of the posting person, I just want it in this chain in case someone is doing research and reads these posts.

      Thanks for posting and good luck to you!

      over 2 years ago
    • ddeangelis' Avatar
      ddeangelis

      I went the homeopathic route. I started using Frankincense oil on my hands, which were so painful. The pain started to lighten up and eventually, I had no pain. I just rub it on my hands everyday, 3-4 times a day. There is a Franincense oil BALM that comes in a jar that I use. Terrific product that I buy off of Amazon. There are many products with Frankincense oil . Pure oil is the best.

      over 2 years ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      I'm so sorry Gabepentin doesn't work for you. If I miss a dose, I know it. I hope you find something that helps. Have you considered acupuncture? I know it works for some people -- I've never tried, so no first hand help here. Good luck.

      over 2 years ago
    • knightwingfire's Avatar
      knightwingfire

      All so far listed and Will be tried My Pharmacy Compounded Topical's Work but not yet to my satisfaction . and they are REALY expensive .

      over 2 years ago

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