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Update from Lou Ann

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

December 3rd was my 8th infusion of Keytruda.  That is still going well with almost no side effects.   I still have some side effects left over from the chemo,.  My Neuropathy is still there and bothers me a lot at night.  My oncologist said that he does not believe that it will get better because of all the Taxol that I have had.  I was supposed to have a CT scan this coming Monday to check out my lovely tumors, but my GP  and oncologist both wanted it moved up because I was having a lot a pain in my left shoulder and neck.  One of the tumors is in the area where the most pain was radiating from. Well, the CT scan does show that the tumor was pushing on a nerve that runs across my shoulder and down my arm.  Good news is that it is the only tumor that has grown.  There is a really good chance the the growth on this one is because of the immunotherapy making my immune system attack it and producing some swelling.  It seems to change,size during the day getting larger and than smaller. I gave in and reluctantly decided to take my GP'S, my Onc's, and his PA's advice and go back on the Pain meds for awhile.

Hugs and prayers to all of you wonderful ladies, Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Everything but one is stable?  That's great!  You really are a pioneer, Lou Ann.  You know we are all hoping that this continues to work with NO SIDE EFFECTS!!!!

BTW, I don't know how you feel about this, or if it's legal where you are, but I have several friends who successfully use cannabis for their pain issues.  They opted for that because they hated the way the other pain meds made them feel.  One fellow uses it topically for neuropathy and it makes a world of difference for him.  Of course, I'm here in California and we have had legal medical marijuana for some time.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Our state just voted to allow its use for medical reasons, but has to figure out the.dispensing of it.  My niece uses it on her adult son with autism for seizures and has descent success.  I want look into essential oils.  I have heard good things about those.  Lou Ann

cindy0519
Posts: 173
Joined: Nov 2015

Great news Lou Ann!  So glad the Keytruda seems to be working.  You mentioned essential oils and I have been using them for various things since I started treatment.  I made a cream that I apply to my hip where I have been having so much pain.  Between everything I am doing, PT, Mobic, the cream, limiting exercise - read no running :( - it is getting much better!!   The cream has the following essential oils in it: Copaiba (inflamation and muscle pain); Valor (helps heal bones); and Frankincense (inflamation and immume support); coconut oil, almond oil, and shea butter. It smells a bit odd because of all the different oils but it really helps! It's not hard to make once you have all the ingredients.   I whip mine because I like it to be like a hand cream but you dont have to.  I have an extra jar from the batch I made - I'd be happy to send it to you if you'd like to give it a try.  Just send me your address and its yours!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

 

What a lovely offer, but I am going to turn you down.  My pastor's wife is mixing me up a couple of things to try.  She is a message therapist who uses essential oils. I am going to give it a try.

Hopugs and prayers, Lou Ann

 

EZLiving66's picture
EZLiving66
Posts: 1371
Joined: Oct 2015

It's good to hear from you, Lou Ann, and even better to hear how your new therapy is working.  I'm with you on the pain meds, but, if they help you sleep, then use them.  You need your sleep!!  We all do!

I am so excited that this drug seems to be working and with little or no side effects!!

Love,

Eldri

janaes
Posts: 787
Joined: May 2016

Lou Ann thanks so much for sharing your update.  I am so glad you are on this site.  You have been an insperation to me.  You fight so hard and am so glad.  I hopeyou find somehelp your pain.  That darn nuerpathy stinks.  Ihave that too and it doesnt seem to be getting better either.  Mine is to the ball of my feet and it buggs me tuns at times.

Lots of love Janae

Nellasing
Posts: 529
Joined: Oct 2016

thanks for sharing that!!!  I too am so glad you come help us all and are such a great example of good attitude and having hope and faith!!!  I hope the pain gives up soon.  I use essential oils- they are wonderful.  I also thought I'd mention that my ND gave me hypericum 6c which I put 3 little balls under my tongue every so often as my feet bother me and it helps me SO MUCH... maybe it could help someone else?  (((HUGS)))

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1583
Joined: Jun 2015

LouAnn, So happy to hear this great news! With all the side effects you had with chemo, finding something that is working and allows you to live life while you attack those darn cancer tumors is a wonderful thing. Thank you for updating us. I'm sure you know by now how special you are to each of us.

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Such a great update - thank you for sharing that news with us! I hope that the pain meds help you through this tough time and that it's short-lived while the immunotherapy does its work on that stubborn tumor. Take good care of yourself and keep that fighting spirit!

Soup52's picture
Soup52
Posts: 903
Joined: Jan 2016

Good news Lou Ann! Yes, better to take the pain meds so you can rest. Neuropathy yes I still have it , too. The PA seemed to think that mine would go away in time, but I actually have my doubts. Anyway keep up the good fight Lou Ann!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Good news Lou Ann!  Glad to hear that something is working and no side effects!

My best to you,

Kathy

MAbound
Posts: 936
Joined: Jun 2016

This is what we all want to hear is going on for you!  You deserve good news so much!  Sorry about the neuropathy pain though. I thought mine was gone already it was so minor, but it started getting bad again during my last week of radiation, boo hoo! I'm back to wearing the hypothermia slippers to fall asleep at night and praying that it will get better again as time goes on. So far that has worked well enough to keep me off the pain meds. Hugs to you!

namedropper
Posts: 102
Joined: Dec 2014

I am glad for your good news. Yeah.

daylady's picture
daylady
Posts: 122
Joined: Dec 2014

Lou Ann, it actually sounds like mostly good news and that is great!  You are one of our trailblazers and I love hearing that your treatment is succeeding.  Keep up the good work! Hugs - Helen

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Lou Ann, I haven't been on the boards for a while and just checked in to see how everyone was doing. So glad you are having such great results. There's been so much success reported with immunotherapy this year. My prayers are with you. Love, Sandy

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

That is such wonderful news LouAnn!!!  My daughter is an R.N. and swears by the issential oils!  So much so that she has become a repersentive of the Doterra line.  Sublingle Frankensence is their best seller though it is kind of expensive.  She and her family use no other kind of medicine, no antibotics, no vaccines, no flu shots, just the oils.  maybe something to read up on.  Best, Debrajo

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