Latest update from IV-ville

Again, there are similarities between our cases.  I've had sciatica since I was 34, so I can identify with how you usually feel.  A couple of years ago, I had numbness develop in the front of my thigh.  I was referred to a neurologist for testing by my PCP.  I thought I still had peripheral neuropathy, but the tests came out negative for that.  I'd had it in both feet.  I still had some numbness in one foot, but that was apparently a result of having nerves cut during bunion surgery.  The nerve studies didn't show any problems causing the thigh numbness.  The neurologist said my problem must be that I was wearing my clothes too tight.  He said a condition called paresthetica meralgia results from that.  I realized that I had tightened a belt a little more tightly recently, so I thought that was the cause.  He said it would go away in 6 months, which it didn't do. 

Eventually, I had a hemoccult test given to me by my PCP.  You may remember my story.  Blood was found in one of the 3 smears I did from my stools, which led to a colonoscopy where cancer was found (by the camera views) growing on the outside of my ascending colon.  It was also in the peritoneum and paracolic gutter, plus it was in my muscle and just about to go into my bone.  I had a CT scan and a PET scan, then surgery the following week.  My GYN/onc. and a general surgeon operated on me trying to remove as much cancer as possible, but they were not able to get it all out of the muscle because it would've left me unable to walk.  They figured chemo would take care of what was left of it, and I was NED after chemo.  However, I'm still numb and my CA-125 isn't as low as it was after my first surgery, so I'm still a little leery.  My GYN/onc hinted that he thought my UPSC would come back again in about 5 years.  I don't think mine was as bad as yours, although you now have me wondering if some of my sciatica was caused by this thing.  I was never told which nerve was the problem, but the neurologist said the nerve ran over the top of my hip, which may fit with the sciatic nerve.  I got epidural steroid shots in Dec., 2016 and Jan., 2017 which seemed to help.  My cancer came back in a big rush shortly thereafter. in two months, my CA-125 went up well over 800%.  My surgery was in early April last year.

I sympathize with how you're feeling.  Regular sciatica is bad enough without having something pressing on the nerve continuously.  I hope they can get most or all of it out with your surgery.  Keep posting so we know what's happening.  Good luck.

Bobbi, how are you?  I have been away too long and not sure if I missed an update since this post.  Hugs, dear girl.  Pain is no fun.

So glad to hear that your pain is being managed and that you have started the Keytruda treatment. Wishing you all the best!

derMaus said:

Dear friends, thank you for

Dear friends, thank you for reaching out to me. I missed all of you while I was away. This is what happened: I'd been having increasing pain from a huge, rapidly-growing pelvic tumor and was scheduled for radiaton starting June 11. I went for my first out-patient treatment but wound up being directly admitted to the hospital due to uncontrolled pain. The week after that was a blur of various drugs but I did manage to complete 4 radiations while in the hospital, courtesy of a morphine drip and staff who were kind enough to ignore my screams. To add insult to injury, my computer got a virus and locked me out the day before I was hospitalized, so I had no means of communication. Caramba! Fortunately a young cousin was able to unlock it today so I can get back into all my accounts. Mirable dictu!

I got home Saturday evening and am now doing daily radiation courtesy of fentanyl patches and continuous morphine shots. I think there must be at least some shrinkage happening, since the pain isn't as bad. On Friday I'll have my second Keytruda infusion, too, so hopefully that's doing it's part as well. The CT scan week after next will tell more. Meanwhile you are my shining stars; thank you again for reaching out. You mean the world to me. B

More adventures in courage and grit.  So proud of you for getting through it and still having the energy to share the details with us!  So eager to hear what you think of Keytruda as far as side effects, and what the CT says.  Thankful we have so many options.  (PS I have a IV friend who had tumors growing after chemo and radiation, and after only 3 months of Keytruda there is NOTHING on the scan.  What hope this gives us!!)

I so much admire you and so many other strong women I've met on this site. Keep your courage up.  Thank goodness for morphine and fentanyl and keytruda. 

B, I am sending you virtual hugs.  Love, E

So glad they aggressively managed your pain. I am sure radiation  is decimating that [Content removed by CSN Support Team.] tumor.

One day at a time.  Cam’t believe how much you have been through Warrior Lady!

I am glad to hear that your pain is subsiding and that you are feeling a bit better. The Keytruda and radiation treatment seems to be working well for you. Will you be receiving the IORT? 

Wishing you only best outcome,

Cathy