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10-23-2007, 07:51 PM
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#1
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Senior Member
Join Date: Sep 2005
Posts: 232
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Strange Question
Ok... here's one for you guys. I have (for about two weeks now) had this really strange vibration in my right thigh. Several times when it first started, I thought it was my phone starting to ring, because it vibrates first and then rings. I didn't think too much about it, but now it seems to be vibrating quite a bit ( I am so weird).
Anyway, I mentioned it to my onc at my 3 month visit and he doesn't think it's cancer related but wants me to see a neurologist if it continues. Of course, it has, so I have an appointment next week. I am feeling a bit worried but more curious as to what this could be.
If any of you have experienced this or heard of someone who has had this "crazy" vibration feeling, please let me know.
Thanks,
Karen
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10-23-2007, 08:09 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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It sounds like it may be muscle or nerve related. Could it be a side effect of one of your meds?
Hope you get an answer soon.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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10-23-2007, 08:25 PM
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#3
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Senior Member
Join Date: Dec 2006
Posts: 136
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Karen -
OMG! I have for almost a year now, have had these strange vibrations in both thighs as well as the groin area. It does not remain constant however. I just felt it was related to meds I have been on (arimidex, aromasin etc) so actually have ignored it. In fact it hasn't been as frequent since I switched meds but still do on occasion get them. They have been more infrequent then frequent lately and I too thought I was going crazy when it was happening quite often. I am anxious to hear what you find out!
__________________
Debra
Diag. 11/05 at age 40 triple positive
3.8 cm tumor and 9 mm tumor
Stage IIb/SN positive(no other nodes)Grade 3
Bilat. mastect. 12/05 (Rt.prophylactic) followed with AC/taxol/Herceptin/tamoxifen then switched to arimidex after hysterectomy in 12/06. August 07 switched to Aromasin due to severe jt. pain from Arimidex. Nov. 2011 No more meds and NED!
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10-23-2007, 09:18 PM
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#4
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Senior Member
Join Date: Sep 2005
Posts: 232
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Debra,
I will let you know what I find out after my appointment next Wednesday. I am also on Aromasin. Maybe that's the culprit
Karen
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10-23-2007, 09:36 PM
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#5
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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I felt this also!
Feels like phone is vibrating and is not. Only on herceptin, no pain just feel vibrating.
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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10-24-2007, 05:59 AM
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#6
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Senior Member
Join Date: Sep 2005
Posts: 232
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dchips1
So you are still taking Herceptin and you get that feeling?
Karen
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10-24-2007, 06:35 AM
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#7
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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yes occasionally
Have you lost weight? I have lost about 20 since the Spring, with some muscle wasting. Just winder if related? It is almost loke a tinnitis of the ear, something that happens for a couple of seconds then goes away.
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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10-24-2007, 07:48 AM
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#8
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Senior Member
Join Date: Aug 2006
Location: Toronto
Posts: 64
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There was an article in the paper recently about phantom phone vibrations. Google it and see if it is like what you are experiencing.
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10-25-2007, 11:44 AM
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#9
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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I, too have had this sensation. It as in my groin area near my hip. I haven't even mentioned it to the doctor, they look at me strangely enough as it is sometimes. More than once I have reached for my phone only to find out that it is just me. It feels as if a nerve is vibrating. I started noticing it after I started TCH. Now that I am on herceptin and tamoxifin, it does not happen as often. I do have a lot of pain in my hips now. I am looking forward to hearing what the neurologist says.
Leslie
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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