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05-17-2012, 04:53 PM
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#1
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Senior Member
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
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restless legs
since i started taxol i have developed restless legs and its driving me nuts. has anyone else experienced this and what can i do to stop it?
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05-17-2012, 05:47 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: restless legs
Yes. Driving me nuts too. Maybe some of the neuropathy helpers...l glutamine, alpha lipoic acid, b vitamins, acetylene l carnitine.
But since it's driving me nuts too, I'm probably not the best resource! Hopefully someone who has it figured it out will chime in!
__________________
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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05-17-2012, 06:12 PM
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#3
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: restless legs
I'm not much help since I had it too and it stopped because we stopped my chemo after 4 doses due to neuropathy! But it is thought that Glutamine helps. Perhaps your doctor has some medication that can intervene? Neurontin maybe???
Otherwise, I fall back on the old saying "when you're going through Hell, keep going" and keep your eye on the prize. Cold comfort, I know.
Keep the faith.
__________________
Bonnie
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
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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05-17-2012, 06:26 PM
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#4
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: restless legs
I've had RLS on and off for years. Until Taxol, I'd conquered it with magnesium. During Taxol, I had symptoms during the infusion* and also if I sat for too long late in the day, but not at any other times. Since then end of chemo, I haven't experienced it at all.
I took 2 grams of ALCAR (acetyl-l-carnitine), and my magnesium intake was (and is) about 600 mg/day. (I also took a bunch of other supplements, including B vitamins, but these two seemed to target RLS.) Calcium is alleged to have a benefit for RLS, so you might want to consider extra dairy intake or a supplement. Just be sure you get enough magnesium along with it.
I wish you the best in finding a solution, because RLS is the pits.
(*Imagine trying to run in place while sitting in the chair--that was me. What a bloody nuisance it was.)
__________________
2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy
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05-17-2012, 09:20 PM
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#5
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Senior Member
Join Date: Dec 2011
Posts: 585
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Re: restless legs
I also have this, but I am not on Taxol but taxotere. I even have it sitting in the treatment chair and it drives me nuts. At home it mostly happens at night when going to bed, and I really haven't found anything that helps except taking a lorazepam to knock myself out. I am on glutamine and B6 for neuropathy, but that hasn't seemed to have much been any help for the restless leg. Definitely ask they doctor if there is anything they can reccomend that could help. Otherwise, as said..all we can do is just keep on keeping on, and know that one day it will be better. I know its hard, hang in there. ((hugs))
__________________
Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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05-18-2012, 05:26 AM
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#6
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: restless legs
All I can add is do not sit while you are having it walk around. Sitting only makes it worse. Good luck.
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05-18-2012, 02:42 PM
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#7
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: restless legs
Some get benefit from "Restful Legs" tabs from Walgreens. Enzymatic Sleep Tonight tabs have Ashwagndha, Magnolia/Honokiol which have anticancer properties as well as potentially helpful with RLS. Mom seems to be getting benefit between the two. Also seems to do better when she walks more.
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05-20-2012, 12:03 AM
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#8
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: restless legs
I've had RLS on and off for a few years, and I find if I take a couple of paracetamol tablets that usually calms it down. I wonder if those who get it during infusion whether it could be related to anti-nausea meds. I know I get very agitated and RLS with some anti-nausea meds.
Cheers Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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05-20-2012, 01:29 AM
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#9
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Member
Join Date: Sep 2011
Location: Melbourne,
Australia.
Posts: 18
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Re: restless legs
I too have restless leg and was on Taxotere and Magnesium supplements really helped.
Cheers,
Cheryl
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05-20-2012, 05:10 AM
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#10
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Senior Member
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 140
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Re: restless legs
OK don't laugh, this worked. I friend told me to put a bar of ivory soap under my sheets and i haven't had a problem since at night. I've been able to sleep through the night. I still had it couple times during the day but its been alot less then before.
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05-20-2012, 06:23 AM
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#11
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: restless legs
Not laughing. 
http://www.peoplespharmacy.com/2005/...oap-under-the/
I have seen people try to explain why it works, but no one has done so to my satisfaction. Still, I can't argue with the fact that it *does* work. Might even work in the infusion chair if you recline during the infusion. Worth a shot, anyway. |
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05-22-2012, 01:48 PM
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#12
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: restless legs
Ivory soap, eh? I have had restless legs most of my life. Sounds funny when I write that, most of the time now we travel in an RV!!! I am going to try the ivory soap.
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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05-22-2012, 03:53 PM
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#13
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Senior Member
Join Date: Jan 2006
Posts: 42
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Re: restless legs
last year my daughter had a problem with restless legs and it was caused from low iron. It got much better when she started taking iron
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05-23-2012, 03:43 PM
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#14
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: restless legs
I was going to mention the ivory soap too!!
__________________
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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05-24-2012, 05:59 AM
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#15
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: restless legs
RLS sucks! I had it during Taxol too. Used to start about 5 minutes into the infusion, and last for days. Ativan helped. Walking helped. Was maxed out on Mg - don't know if it helped, but it sure didn't hurt. Wish I'd known about the Ivory soap thing! That might have been the magic bullet!
The bad news is...nothing made it go away completely. The good news is...it stopped about a week after my last Taxol infusion...and, knock wood...has never returned.
Hope you get some relief soon...but as Bonnie so sagely pointed out...RLS is a small price to pay if the result is kicking a little BC a%#
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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05-25-2012, 05:28 AM
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#16
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: restless legs
Ha, ha. Now I'm laughing.
Got to thinking about how my husband twitches and jumps as he drifts off every night (thereby maintaining my own state of wakefulness--some nights it's so bad, I exit the bed for the comfy couch). I've been feeding him magnesium (and a few other supplements), but although I can hand him horse pills, I can't make him swallow.
So yesterday, I bought some bars of Ivory. Last night, he got into bed to read, and a little bit later, I walked in and puttered a bit before climbing in beside him. He said to me, "I have a question." I looked at him attentively. He said, "WHY was there a bar of Ivory soap...?"
He'd removed it.
My attentive look became dagger-like. I said, "Put it back."
We then had a brief, but animated, discussion about the merits--he told me in no uncertain terms that I'm a total nut job. In spite of his shocking lack of respect, however, he's generally willing to do whatever makes me happy (well, except for taking the supplements, but he has to chew them so I suppose it's understandable), so the soap returned to its resting spot without further ado.
In the absence of a scientific explanation for how it works, I was relying heavily on the placebo effect. Given his reaction--amused and indulgent, but totally disbelieving--I did not have high hopes.
He didn't twitch even once last night. He woke rested and refreshed.
Amazing stuff.
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05-25-2012, 06:11 AM
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#17
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: restless legs
Okay...anyone know what kind of soap stops men from snoring?
I tried the Ivory, but he kept spitting it out!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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05-25-2012, 06:38 AM
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#18
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Senior Member
Join Date: Jun 2011
Location: Somerset, NJ
Posts: 487
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Re: restless legs
You did it wrong--just stuff half a bar up each nostril. That'll fix him.
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05-25-2012, 06:43 AM
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#19
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Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
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Re: restless legs
Silly me! Don't I feel foolish!
So lucky to have an expert close at hand!
Thanks, my friend...I'll let you know how it works.
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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