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Old 02-26-2020, 05:02 PM   #1
Kim in CA
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Location: California's Gold Country
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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...
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Old 02-27-2020, 03:31 PM   #2
tricia keegan
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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.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 03-23-2020, 06:57 PM   #3
StephN
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Unhappy 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.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 03-25-2020, 09:44 AM   #4
Laurel
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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?
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 06-25-2020, 09:13 AM   #5
Laurel
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Re: It's Been Awhile

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

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 09-20-2020, 11:21 AM   #6
mamacze
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Posts: 633
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....
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2020 On Herceptin and NED continues - WOOT WOOT!
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Old 09-23-2020, 10:43 PM   #7
StephN
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Wink 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.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 09-29-2020, 04:45 PM   #8
Laurel
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Location: Hershey, PA. Live The Sweet Life!
Posts: 2,002
Re: It's Been Awhile

Thinking of you, Kim!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 09-30-2020, 05:07 PM   #9
mamacze
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Posts: 633
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
__________________
2001 - Stage 0, lumpectomy, radiation, tamoxifen

2004 - Stage 4, mets to 4 lobes of lungs and liver, lumpectomy, er/pr -, her2 neu+++, Herceptin and Navelbine then Herceptin only.

2005 - Breast Ca vaccinations with the Tumor Vaccine Group in Seattle

2011 - Still Herceptin only and NED


2011, June - STOPPED Herceptin and kicked up my heels!

2012, February - 1 small tumor came back to haunt me in my lungs - back on Herceptin only, tumor stable.


2015, November - tumor on lungs removed (Segmentectomy), back on Herceptin only
Received U of W vaccine clinical "booster" Vaccine


2020 On Herceptin and NED continues - WOOT WOOT!
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Old 10-01-2020, 08:20 AM   #10
Laurel
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Posts: 2,002
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!
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

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Old 10-01-2020, 12:36 PM   #11
donocco
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Posts: 468
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
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Old 10-01-2020, 02:29 PM   #12
Laurel
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Posts: 2,002
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
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

13 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
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