HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 02-26-2020, 05:02 PM   #1
Kim in CA
Senior Member
 
Kim in CA's Avatar
 
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
Unhappy It's Been Awhile

Haven't posted in awhile, so thought I'd check in. I've been dealing with a steady worsening right arm/ hand weakness for the last two years. After being referred to a neurologist and trying physical therapy, chiropractic, and acupuncture, in the hopes of avoiding surgery, I finally gave in when symptoms had become so disabling, I could barely hold or do anything with my right hand and arm. Being right handed, this really threw me a curve!

So in April of last year I opted for a posterior cervical foraminotomy/laminectomy at C4/5 to remove bone spurs and open the area that the nerve root passes through, which looked toi be the most obvious culprit. Unfortunatey, my symptoms continued to get worse. I had decided early on that if this surgery didn't work, I wasn't going to do anything more invasive, and I would just learn to live with my disability.

After a few months, I realized that QOL was way more important than I had realized, and went back to the surgeon to discuss other options. The other surgery, that he originally recommended and I was afraid to do, because it would require me to be off Kadcyla for at least 3 months, was now on the table.

So, nine months after the first surgery, I had an ACDF procedure, Anterior Cervical Dissection and Fusion. The plan was to remove the worn out discs and fuse 3 to 4 levels of my spine using cadaver bone, and hold everything in place with a plate and screws. As it turned out they were only able to do two levels because my platelets were too low from the Kadcyla, and there was too much bleeding even though they transfused platelets in the OR.

Well, guess what?? I woke up from surgery, and my right arm was completely paralyzed...WTH!

I just hate it when my husband is right. He has a habit of saying "things could always be worse" whenever I get feeling sorry for myself. It's been 4 weeks since the surgery, and the surgeon has presented my case to his colleagues, and they now think the problem is probably in my brachial plexus. I have an MRI scheduled, so won't know more til then. This actually makes more sense to me, because over the years, since my mastectomy and 36 lymph nodes were removed, my whole right side has gradually collapsed and atrophied. Anyway, this prompted me to do a little research, and I found this very interesting article that was presented at ASCO in 2016.

https://ascopost.com/issues/july-10-...cer-survivors/

The first two paragraphs describe my situation very accurately. If I had read this beforehand, I would have insisted they do an MRI of my whole right side before letting them cut up my neck twice!

Really enjoying the chemo break though, and keeping fingers crossed that my cancer stays quiet, while I wait for my spine to heal, and hopefully fuse.

Maybe some of you will find this information useful, if you are experiencing upper extremity issues.

Thanks for letting me vent!

Kim
__________________
Diag. Feb 1997 4.5cm IDC <10%ER+, PR-. 5 out of 36 nodes +. Mastectomy followed by 3 rounds Adriamycin/Cytoxin.


5/1997 Hi Dose Chemo w/ Stem cell rescue. Spent 4 weeks in isolation ward. Then 6 weeks radiation.

9/2001 widespread mets to liver. 8 mos Taxotere/Herceptin brought me almost to NED. Stop Taxotere & add Femara .

11/2002 liver resection to remove spot that turned out to be necrosis. Officially NED!

7/2003 Tumor markers rising add Xeloda Disastrous reaction, 8 days hospital, but tumor markers came back to normal!

June -Dec 2004 UW Vaccine Trial.

7/2005 MRI single 11mm brain met
8/2005 Gamma Knife.

Brain MRI @3 months NED!

2006-2011 brain/body still NED

8/04/11 Taking Herceptin break, will monitor with tumor markers.

6/20/12 Tumor markers begin to rise. CA15-3 is 31.3 and Her2 Serum is at 17.1 Decide to repeat in one month.

7/23/12 CA15-3 now 49.3
Her2 Serum 26.8

8/6/12 Back on Herceptin
CA15-3 now 76
Her2 Serum now 49

11/7/12 Add weekly Taxotere for 4 cycles

2/2013 Stopped Taxotere added Perjeta. MRI shows approx. 50% reduction liver mets. CA15-3 still elevated @ 55. Will continue on just Herceptin & Perjeta.

November 2014 Continuing on Herceptin, Perjeta, and
Femara indefinitely. Guess I'm NED again, but watching those tumor markers carefully!

Dec. 2015 PET scan reveals mass in perirectal area of abdomen.biopsy confirms. Still Her2+, but no longer ER+. Bye bye Femara

Jan 2016 Begin Kadcyla

March 2016 PET scan shows tumor now barely visible, still NED everywhere else.
2016/2017 continue Kadcyla

November 2017 brain MRI reveals small focus of T2 hyperintensity with possible 4mm enhancing nodule. Short term follow up MRI suggested. Stay tuned...
Kim in CA is offline   Reply With Quote
 

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 05:36 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter