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11-18-2007, 09:01 AM
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#1
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Senior Member
Join Date: Aug 2006
Location: Toronto
Posts: 64
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You can get quinine sulfate 200mg tablets from Canadian pharmacies (with a prescription) but they aren't super cheap, run about .70 per tablet. Perhaps that could be a Plan B or C.
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11-18-2007, 11:12 AM
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#2
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Member
Join Date: Nov 2007
Location: Southern California
Posts: 15
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quinine Sulfate
I didnt know that but it doesnt surprise me. Since it appears Stephanie lives in Seattle Wa going to Victoria British Columbia would be very easy. It would be possible to open a capsule an d only use part of it in tonic water when needed but this would taste awful. Quinine is the bitterest substance known and this bitter taste can be detected in concentrations of 1:100,000
Paul
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11-18-2007, 11:22 AM
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#3
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Senior Member
Join Date: Sep 2001
Location: California's Gold Country
Posts: 404
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Steph,
Back when I was on Taxotere and for several months afterwards, I had terrible leg cramps. They were the type that were so bad that I would bolt out of bed and hop around the room trying to get my legs to loosen up. (This would go on several times throughout the night, pure misery!)
I had always heard that potassium was good for leg cramps so I gave it a try and started taking it at bedtime. The cramps stopped immediately. After I used that first bottle of potassium, I quit taking it to see what would happen and amazingly the cramps didn't come back.
Occasionally when I do one of my endurance rides and my legs have worked really hard, I will start to get the cramps in the middle of the night. When that happens, I just get up and take a pill, and within minutes the cramping goes away.
Anyway, that's what worked for me, and I really had bad cramps!
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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11-18-2007, 02:06 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Last night
Thanks, ladies and Paul, for your various thoughts and suggestions. I had my massage yesterday and felt worlds better afterwards, had lots of knots here and there from all the stress and tension I have been under with my dad's passing. Had not seeen my massage therapist since mid-August!
My local supplements store is just across from where I get my massages so stopped in and took a look. Came out with a formulation of magnesium and potassium - 600mg of mag. Took one with dinner.
The good news - I got through the night without a SINGLE cramp in leg, ankle, foot or sometimes all three areas. Guess I will continue with the magnesium pill in the evening.
My problem stems from having taken Taxotere and then 6 months after that taking 27 weekly treatments of Taxol/Navelbine/Herceptin for mets. All those taxanes killed my deep tendon reflexes.
How many of you on multiple treatments have had any of your docs take the rubber hammer to your reflexes? Mine show very little response and that has been the case since the last few of the Taxol group. My nerves do "fire" and my balance improved over time (was a bit rocky during all that chemo - had to install grab bars in shower etc.).
__________________
"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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11-18-2007, 08:44 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Steph, that's great! I didn't know about the potassium, maybe my potassium is low also and that's why I still sometimes have mild cramps; I'll look into a combo pill. How much potassium is in your supplement?
<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.
Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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