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

Re: It's Been Awhile
 

Kim thank you for the update although I'm sorry your news was not better and hope you regain some arm movement soon. Thank you too for the link, I hadn't come across this info before so will share with some friends, thank you and hope the chemo break lasts as long as possible for you.

Re: It's Been Awhile
 

Well, that is just the pits! I have learned that sometimes surgeons are in their own box and don't take the time to look at all the angles.

Could you still ride your horse? Hope you could!

We all have some damage in our spine and other joints as we age, but don't always need to give it over to a neuro or osteo-surgeon.

Be well and stay out of a hospital for the time being.

Re: It's Been Awhile
 

Kim,

I missed this post! Glad Steph visited it recently. Goodness! What a saga. Like Rosanna Rosannadonna used to say, "it's always somethin!" How are you doing presently? Healing?

Re: It's Been Awhile
 

Just checking in, Kim, to see how you are progressing. Hoping you are healing and doing well.

Re: It's Been Awhile
 

Hi Kim,
Your alter ego Kim from CT here - It has been awhile for me as well and I am saddened to hear of this progression for you, but happy to see your post right away when I logged on today. I think of you often.
Kick in the gut news that I feel all across the country. First things first - your right arm? Status?
Second - please tell me you are still able to ride your beautiful horses??
Keep us posted please....

Re: It's Been Awhile
 

Kim in CT! So glad you looked in. I ran across an email exchange we had a while back when you were being worked up for another problem. Hope that turned out OK, as we are WAY behind! Warm hugs to you.

Re: It's Been Awhile
 

Thinking of you, Kim!

Re: It's Been Awhile
 

Hey Laurel,
Thanks! It is good to be active and back on the message boards. I always loved your signature - yes I think you just might hang around awhile.... !! Are you still on Tamoxifen??
Kim from CT

Re: It's Been Awhile
 

Hey there, Kim!

Yes, it is good to be back on the board! Gosh, I forgot to update my signature to reflect that it is now 12 years NED, praise be to God! As for Tamoxifen, I opted to do my 5 years of anti-hormonals with an A.I. and Tamoxifen. Femara was torture on my joints, so after 2 years I switched to Tamoxifen. Like so many of us, I was encouraged to do another 5 years of either an AI or tamoxifen, but with such little gain in disease-free survival it did not seem worth the reduction in my QOL. I may live to regret that choice, but it is so hard to decide what path to travel with this wicked foe and the act of living life fully has value. I made my choice and now I walk it out.

Presently, I am up to running 3 miles a day and doing yoga, not too shabby for a 61 year old gal! I feel better today than I did 10 years ago when I was in treatment. Life is interesting, although challenging as we age, and I am grateful for having had the chance to continue on post-cancer. I hope to "hang around awhile..."

Hoping all is well with you and yours, Kim!

Re: It's Been Awhile
 

Laurel

If you are not Tamoxifen Im curious if you are on any antidepressant medications for hot flashes. If you are, you have to be careful which one has been prescribed. Tamoxifen is metabolized by the liver enzyme CYP2D6 to its active form. many of the common antidepressants such as Fluoxetine (Prozac)
Paroxetine (Paxil) Bupropion (Wellbutrin) and Cymbalta inhibit the CYP2D6 enzyme. I think you can use Effexor and Celexa with Tamoxifen. Id have to check.

Paul

Re: It's Been Awhile
 

Paul,

I am not on any anti-depressants, but find your information helpful and good for us survivors to know. Thanks!

Laurel