Scan Not Great, May Try Folfox again, neuropathy tips?

NewHere
NewHere Member Posts: 1,393 Member

The tumors in my lungs are having a field day.  This includes one that is close to (if not actually started to) affect my airway.  Yippee.  

I may be able to have radiation, but it is not clear cut based on the location and potential damage.  

The chemo options left would, at best, stop growth for a bit.  The FOLFORI is definately off the table due to that it stopped working.  So we discussed FOLFOX - I had it as mop-up 5 years ago and at the time it seemed to shrink some things, particularly one possible met which turned out to be a met in the lung, which was small.  Overall I tolerated the FOLFOX well.  Did not beat me up like FOLFORI did.  The big effects for me was the cold sensitivity, but got used to dealing with it.  The other big one was the neuropathy.  After the 8th treatment with the oxaliplatin, the neuropathy was progressing to the point that my oncologist stopped using it.  It was pretty bad for the next 6 months, and the progressively improve over the next 18 months, though I still have it 5 years later.

Since I am pretty much out of options at this point, I think I will go back on the FOLFOX.  I know people have mentioned some things to help with the neuropathy.  Tumeric was mentioned I believe a few times.  Is there anything else that has worked for people?  Vitamins, diet, supplements, I am willing to try pretty much anything.  I know there are also medicines such a lyrica which can help when the neuropathy develops, but I would like to be able to get ahead of the neuropathy and avoid it coming back as much as possible.

I will touch base with my intergrative medicine doctor and oncologist also, but figured I would see what things are out there where people had some good experiences.

Thanks!

Comments

  • Trubrit
    Trubrit Member Posts: 5,643 Member
    Sorry to hear this, New

    FOLFOX is not a fun ride, as you well know; and a secodn dose may in fact turn out to be worse BUT, it may also kick the patootie of some of your mets. 

    I have neuropathy. Not severe, as in painful, but the numbness and tingling are constant.   For me, I have found that my neuropathy symptoms are exacerbated by sugars - the most, salt and acetic acid; all of which I eat on a daily basis in some form or another.  If I were smart, I would cut them out of my diet, but I am not smart. 

    I am always an advocate of drinking plenty of water - a cure-all, so to speak.  OK, I know its not a cure-all, but you know what I mean. 

    That is about my two cents worth of help. 

    I am sorry that you are heading back into the FOLFOX, but happy that they think it may buy you some time. 

    Tru

     

  • abrub
    abrub Member Posts: 2,174 Member
    Glutamine and Alpha Lipoic Acid

    Alpha Lipoic Acid (600mg twice a day) helped me.  I'm told that Glutamine is also helpful (I'd have to look up the dosage I was advised.)  I'll get back to you.

    Alice

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,271 Member
    Exercise

    My saying is always, "exercise helps with everything."  I too found that alpha lipoic acid seemed to help with nerve issues, but I had a bad reaction to it, so I do not take it.  Good luck with the challenges you face.

  • NewHere
    NewHere Member Posts: 1,393 Member
    Trubrit said:

    Sorry to hear this, New

    FOLFOX is not a fun ride, as you well know; and a secodn dose may in fact turn out to be worse BUT, it may also kick the patootie of some of your mets. 

    I have neuropathy. Not severe, as in painful, but the numbness and tingling are constant.   For me, I have found that my neuropathy symptoms are exacerbated by sugars - the most, salt and acetic acid; all of which I eat on a daily basis in some form or another.  If I were smart, I would cut them out of my diet, but I am not smart. 

    I am always an advocate of drinking plenty of water - a cure-all, so to speak.  OK, I know its not a cure-all, but you know what I mean. 

    That is about my two cents worth of help. 

    I am sorry that you are heading back into the FOLFOX, but happy that they think it may buy you some time. 

    Tru

     

    Thanks Tru

    It was not great to hear the news.  But the possibility of doing something - even if it means going back on FOLFOX - makes me feel like I am doing something again.  Thanks for the tips on those items.  I am not a big sugar or salt guy so that is good.  Though I think graham crackers and ginger snaps were my go to foods for the first three days.  I was never massively nauseous, just slightly queasy, but was limited in what I wanted to eat for the first few days of each cycle.

  • NewHere
    NewHere Member Posts: 1,393 Member
    abrub said:

    Glutamine and Alpha Lipoic Acid

    Alpha Lipoic Acid (600mg twice a day) helped me.  I'm told that Glutamine is also helpful (I'd have to look up the dosage I was advised.)  I'll get back to you.

    Alice

    Thanks Alice

    I am going to get those.  I am guessing since you and I are at MSK, should be fine with my oncologist. 

  • NewHere
    NewHere Member Posts: 1,393 Member
    edited March 2020 #7

    Exercise

    My saying is always, "exercise helps with everything."  I too found that alpha lipoic acid seemed to help with nerve issues, but I had a bad reaction to it, so I do not take it.  Good luck with the challenges you face.

    I Am Going To Keep Biking and Running

    Thanks Sandia

    With the coronavirus thing happening, I am going to probably stay away from the pool for a bit.  Which is a bit of a bummer since i enjoy rotating the three sports, but that really is such a small issue - as you mentioned in the other post, I am fortunate that I am able to still do these things and my wish is everyone could do it.   

    Being on a two week cycle is going to make it a bit more difficult for me to train for longer distance races.  But even shorter races as a goal is fine in my book.  And again I am fortunate.  The training these last two years, plus the people I have met, have been important and a great support.

     

  • Canadian Sandy
    Canadian Sandy Member Posts: 727 Member
    Not sure what to say here but

    Not sure what to say here but do know you are one strong person. Hope the folfox controls things.

  • abrub
    abrub Member Posts: 2,174 Member
    edited March 2020 #9
    NewHere said:

    Thanks Alice

    I am going to get those.  I am guessing since you and I are at MSK, should be fine with my oncologist. 

    Here's what I found in my old notes:

    This was from an integrative med MD not at MSK.

     

    For neuropathy:

     

    Magnesium Citrate – 400 mg/day

    Alpha Lipoic Acid – 600 mg bid  (I ended up taking 60 mg qd, as the evening dose upset my stomach; still had good results)

    Vit. B Complex (100 mg) daily

    Glutamine – 5-10g/day 

     

    I really only followed through on the Alpha Lipoic Acid - that did the most for me.

  • MaryCarol5
    MaryCarol5 Member Posts: 102
    Yes, the ALA seems to work

    Yes, the ALA seems to work well for many people   I was given effexor at the onset of my diagnosis (off label use at the time) and it nearly cured my neuropathy which was severe at the time.  I later (1 yr) asked to be weaned off (6 wks of prozac) and have not had any increase in severity of symptoms.  Just another option to discuss with your doc. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    edited March 2020 #11
    Sorry

    I'm sorry to hear that you are facing FOLFOX again and I'm not able to give you any suggestions on supplements as my doctor wouldn't let me take very much during treatment, including vitamins.  I've got neuropathy permanently and take Gabapentin daily for it.  It's good to hear that you handled it well the first time so hopefully you will manage good this time as well.

    Kim

  • NewHere
    NewHere Member Posts: 1,393 Member
    edited March 2020 #12

    Not sure what to say here but

    Not sure what to say here but do know you are one strong person. Hope the folfox controls things.

    Thank You Sandy

    I feel a lot better that I can at least try FOLFOX again as compared to hope for a trial or go one one other chemo which really does not do much, if anything, for a short period of time.

  • NewHere
    NewHere Member Posts: 1,393 Member
    edited March 2020 #13

    Yes, the ALA seems to work

    Yes, the ALA seems to work well for many people   I was given effexor at the onset of my diagnosis (off label use at the time) and it nearly cured my neuropathy which was severe at the time.  I later (1 yr) asked to be weaned off (6 wks of prozac) and have not had any increase in severity of symptoms.  Just another option to discuss with your doc. 

    Interesting About the Effexor

    I wil definately bring that up with my doctor.  The neuorpathy is a big concern. When I ended the treatment in 2015 it was really bad.

  • NewHere
    NewHere Member Posts: 1,393 Member

    Sorry

    I'm sorry to hear that you are facing FOLFOX again and I'm not able to give you any suggestions on supplements as my doctor wouldn't let me take very much during treatment, including vitamins.  I've got neuropathy permanently and take Gabapentin daily for it.  It's good to hear that you handled it well the first time so hopefully you will manage good this time as well.

    Kim

    Thanks Kim

    I am hoping I can keep the neuropathy in check and get some of these tumors to start shrinking ASAP.  :)