New to it all......

RetiredNellie

Hi everyone. 

I joined a few days ago after reading all the posts.  I want to tell you how thankful I am that I found this site and I am grateful that all of you (those still with us and those that are now gone) have been so candid and willing to share your personal journeys. Thank you!!

I'm not quite ready to share everything about myself but will relate that I am Stage 2A Colon (T3NOMO, Sigmoid, and no vascular issues either).  I decided to attempt chemo (FOLFOX port administered) and made 6 sessions before I called it quits.  I am one of the ones that CEA was not a good indicator for me as it was a 1.8 pre-surgery and stayed the same after surgery.  I had another colonoscopy a month after I finished chemo and it was whistle clean, praise the Lord.  Unfortunately, neuropathy began from the first session in both the hands and feet and became progressively worse.  I am still dealing with some bad neuropathy but am hopeful it is not a permanent situation.  The medicine they gave me had severe side effects too so that is no longer an option (tried both, the G one???? and lyrica)  I deeply admire each of you that had more guts and fortitude to continue on with chemo but unfortunately I had severe reactions throughout.  Time will tell if the decision was the right one but as I tell my friends, I'm still kicking and wouldn't be if I had gone on.

I am also a researcher as I've noticed many of you are too and have found it soothing to educate myself as I go on this journey.  I have learned so much from each of you and again, thank you!!  I am a spiritual person and have found great comfort in my faith; and I hope no one objects but I have added you to my personal prayers as I read the various postings.  If anyone does object, please let me know and I will respect your wishes in not praying for you personally. 

I had my 6th chemo session on July 12th and am in the process of "interviewing" (LOL) new oncologists.  As several of you have related, if you have no trust in your provider you need to look elsewhere.  And I loved the person that said to remember that they work for you!!  I think the doctors forget that this is a "team" effort.  If you have any questions, please feel free to ask.  Again, thank you so much and I hope to be able to help others taking this journey with my personal experiences and what I've learned by my research and personal trial and error.

One last thought......I didn't realize that supplements and your diet was that important so very thankful to have read about that as I now know some additional questions to discuss with my oncologist when I find my new one.  I'm seriously considering asking to meet with a nutritionist as I atill don't have much of an appetite and when I do eat, I'm not making good choices.  Take care.

Sincerely,

Sharon

abrub

Welcome, Sharon

Been there, done that, have residual neuropathy (and 9 years later am back in the fray.)

Supplements recommended for neuropathy include B6, Alpha Lipoic Acid (which helped me a lot - 600 mg twice a day) and Glutamine.  I started the Alpha Lipoic Acid a year after chemo, and was amazed at the improvements.  I took B6 throughout chemo; it didn't help me much.  I've randomly tried the glutamine, but never stuck with it.  And I only made it through 7 rounds of chemo, and hope that my new venture won't make that a necessity again.

Good luck!  Some of the friends you'll make here will prove invaluable.

Alice

Trubrit

Welcome to the forum

It sounds like you are well educated or getting there (its a journey) concerning your diagnosis. You know what they say, 'Knowledge is power'.

Was the other drug, Gabapentin? That can be pretty effective for nerve damage. 

As far as diet, I think that is a very personal thing. We all learn to do what is best for us, and no doubt, all of us could do better. If it gives us peace, then I think we should follow our instincts, which are different for everyone. 

I'm sorry FOLFOX was so hard on you; especially the neuropathy. I hope, as the monts pass, the symptoms disappear. I've almost four years out, and have neuropathy, but it is not severe, thank goodness. I can live with it, at this point. 

Good luck as you move forward. I look forward to hearing more from you. 

SUE

John23

Trubrit said:

Welcome to the forum

It sounds like you are well educated or getting there (its a journey) concerning your diagnosis. You know what they say, 'Knowledge is power'.

Was the other drug, Gabapentin? That can be pretty effective for nerve damage. 

As far as diet, I think that is a very personal thing. We all learn to do what is best for us, and no doubt, all of us could do better. If it gives us peace, then I think we should follow our instincts, which are different for everyone. 

I'm sorry FOLFOX was so hard on you; especially the neuropathy. I hope, as the monts pass, the symptoms disappear. I've almost four years out, and have neuropathy, but it is not severe, thank goodness. I can live with it, at this point. 

Good luck as you move forward. I look forward to hearing more from you. 

SUE

SMOOOOCH^*

Re:
"As far as diet, I think that is a very personal thing. We all learn to do what is best for us, and no doubt, all of us could do better.......
........ If it gives us peace, then I think we should follow our instincts, which are different for everyone."

 

Loveya' Sue !!

John

 

RetiredNellie

Thank you to all for

Thank you to all for responding.  Yes, the neuropathy drug I first tried was what you stated above......I might try it again since Maybe it interracted badly with the chemo?  I will discuss with my oncologist, once I have a new one.....LOL.....take care.

sincerely,

Sharon

kristasplace

RetiredNellie said:

Thank you to all for

Thank you to all for responding.  Yes, the neuropathy drug I first tried was what you stated above......I might try it again since Maybe it interracted badly with the chemo?  I will discuss with my oncologist, once I have a new one.....LOL.....take care.

sincerely,

Sharon

Neuropathy management

Hi Sharon! I see a pain doctor for my neuropathy. He's a neurologist and I get shots in my lower back every few months that helps with the shooting pains in my legs, but not the numbness or other problems associated with neuropathy. Some people don't suffer with it forever, and others do to varying degrees.

I'm a strong advocate for diet in controling cancer, but some of the things I've done that have worked require a lot of sacrifice and many find it too challenging. What John23 has done (Traditional Chinese Medicine) is a really good option if you feel you need help for any kind of symptoms, and it doesn't require a lot of work. I'm going to go back to my TCM doctor to try acupuncture for the neuropathy. The Gabopentin (sp?) is habit forming, and most of the drugs they use for neuropathy have side-effects that I personally didn't find worth the risk.

Krista

RetiredNellie

abrub said:

Welcome, Sharon

Been there, done that, have residual neuropathy (and 9 years later am back in the fray.)

Supplements recommended for neuropathy include B6, Alpha Lipoic Acid (which helped me a lot - 600 mg twice a day) and Glutamine.  I started the Alpha Lipoic Acid a year after chemo, and was amazed at the improvements.  I took B6 throughout chemo; it didn't help me much.  I've randomly tried the glutamine, but never stuck with it.  And I only made it through 7 rounds of chemo, and hope that my new venture won't make that a necessity again.

Good luck!  Some of the friends you'll make here will prove invaluable.

Alice

Thank you for the valuable

Thank you for the valuable information.  I am so sorry you are back in the "fray" again but am praying for a great result for you!  Please take care.

sincerely,

Sharon

RetiredNellie

kristasplace said:

Neuropathy management

Hi Sharon! I see a pain doctor for my neuropathy. He's a neurologist and I get shots in my lower back every few months that helps with the shooting pains in my legs, but not the numbness or other problems associated with neuropathy. Some people don't suffer with it forever, and others do to varying degrees.

I'm a strong advocate for diet in controling cancer, but some of the things I've done that have worked require a lot of sacrifice and many find it too challenging. What John23 has done (Traditional Chinese Medicine) is a really good option if you feel you need help for any kind of symptoms, and it doesn't require a lot of work. I'm going to go back to my TCM doctor to try acupuncture for the neuropathy. The Gabopentin (sp?) is habit forming, and most of the drugs they use for neuropathy have side-effects that I personally didn't find worth the risk.

Krista

Thank you for the additional

Thank you for the additional information.  I appreciate it.  I've never tried accupuncture but if things don't get better I will definitely be considering this option.  Take care.

sincerely,

Sharon

ron50

Hi Sharon

   My neuropathy , I am told ,is not due to chemo. I had chemo before the availability of the platinum drugs. I have been diagnosed with moderate to severe motor sensory peripheral neuropathy of both feet , legs and lleft hand by a neurologist. I have tried lyrica. neurontin, both used in epilepsy, endep a tricyclic anti-deppressant found to also have properties as a neurological analgeasic , norspan and fentanly patches , both nasty narcotic derivatives plus I spent two years on Targin,oxycodone//naloxone.It had more side effects than chemo and took 34 weeks to wean off. I was stage 3c into six nodes. I had some stuff called levamisole to enhance the 5fu . It was banned around 2001 for often fatal side effects. I had 48 weekly sessions of 5fu and 24 fortnightly hits of nine tablets of levamisole. I have quite a few problems including a couple of undiagnosable auto immune diseases. Probably chemo induced but no use in worrying . i had my chemo nearly nineteen years ago and I am still alive and cancer free. One of my auto immune diseases is nephrotic syndrome of the kidneys. I lose up to 7+grams of protein a day thru my kidneys. They are currently using cyclosporine to keep it in check.   i am in stage 2 kidney failure and cannot take any of the pain killers that are hard on kidneys. I have learned to live with the pain simply because there is not many options  You will find that a lot here, survivors accept a lot of stuff that is unpleasant. It's what makes us survivors, Hugs ron.

RetiredNellie

ron50 said:

Hi Sharon

   My neuropathy , I am told ,is not due to chemo. I had chemo before the availability of the platinum drugs. I have been diagnosed with moderate to severe motor sensory peripheral neuropathy of both feet , legs and lleft hand by a neurologist. I have tried lyrica. neurontin, both used in epilepsy, endep a tricyclic anti-deppressant found to also have properties as a neurological analgeasic , norspan and fentanly patches , both nasty narcotic derivatives plus I spent two years on Targin,oxycodone//naloxone.It had more side effects than chemo and took 34 weeks to wean off. I was stage 3c into six nodes. I had some stuff called levamisole to enhance the 5fu . It was banned around 2001 for often fatal side effects. I had 48 weekly sessions of 5fu and 24 fortnightly hits of nine tablets of levamisole. I have quite a few problems including a couple of undiagnosable auto immune diseases. Probably chemo induced but no use in worrying . i had my chemo nearly nineteen years ago and I am still alive and cancer free. One of my auto immune diseases is nephrotic syndrome of the kidneys. I lose up to 7+grams of protein a day thru my kidneys. They are currently using cyclosporine to keep it in check.   i am in stage 2 kidney failure and cannot take any of the pain killers that are hard on kidneys. I have learned to live with the pain simply because there is not many options  You will find that a lot here, survivors accept a lot of stuff that is unpleasant. It's what makes us survivors, Hugs ron.

Thank you for the information

Thank you for the information Ron.  I am sorry your kidneys took a beating from everything you had to do to survive!  I am currently weening myself off of pain killers.  I'm down to oxy 2-3 times a day and as you know, we were on alot more so am hopeful to be totally done soon.  I want to be like you and tough it out with the pain.  Take care of yourself and thank you again.

Sincerely,

Sharon

beaumontdave

Hello Sharon, it sucks you

Hello Sharon, it sucks you have to be here, but its nice you're sharin'. I did the full twelve of Folfox and lost most of the nueropathy in about a year and a half. Nothing helped the neuropathy much, not Gabapetin, Lyrica, and getting dependent on Oxy and/or Norco especially sucked. I take Trammadol for occassional pain, [bad feet] and a baby aspirin because everything I read says to. I try to get plenty of veggies and fruit, but otherwise eat what I like. That's not an endorsement of eating whatever, I'm just lazy that way. The other parts of the story are in the bio section. Welcome.......................................Dave