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Old 04-28-2011, 10:43 AM   #1
bejuce
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Tingling/weird sensation near top of shoulder/clavicle

Hi everyone,

For the past couple of days I've been having sporadic episodes of tingling near the top of my right (the cancerous side) shoulder and clavicle. Yesterday I could also feel it in my neck but today it's just in the shoulder area. The sensation comes and goes and sometimes it's painful and even radiates down my arm.

I'm trying not to panic and have not called my doctor/nurse yet. Any clues on what could be causing the tingling? I've felt the areas repeatedly but can't find any swollen lymph nodes. Besides lymph nodes, could this be lymphedema? Nerve pain? Or something else?

Thanks for your insights!!!
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 04-28-2011, 10:53 AM   #2
Barbara2
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Re: Tingling/weird sensation near top of shoulder/clavicle

Try putting one of the sticky pain patches on the place where you think is the souce of the trouble, and see if that makes a difference. And maybe take Motrin, etc. ? I'm sure others will give you more sound advice/ideas.
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Old 04-28-2011, 11:25 AM   #3
chrisy
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Re: Tingling/weird sensation near top of shoulder/clavicle

It could be many things; it could be nothing! Use the 2 week test: If this persists for 2 weeks, get it checked out. Try not to freak out (easier said than done, I know!)
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June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 04-28-2011, 12:04 PM   #4
BonnieR
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Re: Tingling/weird sensation near top of shoulder/clavicle

The fact that it is sometimes painful and radiates down your arm concerns me. I suggest you contact your GP and be sure nothing is going on cardiac-wise.
Also, silly question, but do you have your gall bladder? Sometimes that manifests as shoulder pain.
Keep the faith. But call a doctor!
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Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
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Old 04-28-2011, 12:26 PM   #5
chrisy
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Re: Tingling/weird sensation near top of shoulder/clavicle

good point, bonnie.
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 04-28-2011, 12:45 PM   #6
lk1
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Re: Tingling/weird sensation near top of shoulder/clavicle

Hi Marcia,
I also had shoulder pain just a couple of weeks ago along with tingling and pins and needles down my whole arm (not the cancer side). Memorial Sloan sent me to their neurologist where they did an EMG (to test nerve damage) and I also had an mri of the shoulder and cervical spine.. I was diagnosed with carpal tunnel from the elbow down (was told carpal tunnel nerve at the elbow and wrist which does radiate to the shoulder and that's what caused the initial shoulder pain).
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Old 04-29-2011, 08:50 PM   #7
bejuce
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Re: Tingling/weird sensation near top of shoulder/clavicle

Thank you so much, ladies!!! I was pain free today and I'm hoping it'll stay that way. Last night was weird though - I was brushing my teeth and could feel the nerves tingling in my shoulder and this time also where my right breast used to be. It was a hot, needle-like tingling sensation that lasted a minute or so but then it stopped. No clue what this could be, but I sure hope it's not any cancer cells acting up again.

One piece of anectodal evidence - after my 3rd was born in '06, I had weird
tingling sensations in my right arm. Not sure if there's any correlation, but when I found my swollen node in '08, I wondered whether those sensations were due to the node pressing on my nerves.... Either way, it's good to be in tune with our bodies.

Thanks again!
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 04-29-2011, 10:52 PM   #8
Jackie07
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Re: Tingling/weird sensation near top of shoulder/clavicle

Marcia,

The only way to stop the worry is probably to request for an MRI (of the head) and check with your doctors about other diagnostic tests.

Really didn't want to scare you - but before my life-long brain tumor was found, I had those weird 'tingling' sensations off and on for many years. When I took Anatomy & Physiology 4, 5 years after my brain tumor surgery, I finally found the explanation of those weird sensations.

The 12 cranial nerves link to all sorts of organs (skin is considered an 'organ') in our body. If there's any tumor (or scar tissue)pressing on a nerve in the shoulder/breast area, we will probably feel the irritation.

Since your CA 15-3 is normal and you've just finished the vaccine trial, I'd think chances are that the scar tissues had caused the tingling feelings. Can you get an appointment and find out for sure?
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Old 04-30-2011, 10:48 AM   #9
Shobha
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Re: Tingling/weird sensation near top of shoulder/clavicle

Hi Marcia,

So happy to hear you were pain free yesterday! You are always in my thoughts and I am praying this is nothing at all.

hugs,
shobha
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Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
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