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Old 07-02-2007, 08:31 AM   #1
LAURIE
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leg cramps on 3 week dosing

Last Tuesday was my first 3 week herceptin dosing. My leg cramps are much worse than my 1 week dosing. Do they get better as the weeks go on? Are they just bad the first week and get better as the three weeks go on? Is there something I can do to help the cramps. I don't feel them to bad if I am moving, but I need to sit sometimes and sleeping is crazy. I stretch my legs in the morning and get charlie horses. ouch, very painful. Any advice?

I really want to continue with the 3 week dosing, it will be so much easier for work/life/treatment balance.
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Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009

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Old 07-02-2007, 08:39 AM   #2
suzan w
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Unhappy

I, too, had terrible leg cramps while on herceptin...and still get them, but not very often. They would happen at night for the most part. Sometimes standing on a cold floor barefoot would help. Also heat applied to the affected leg. I would heat up a wet towel in the microwave (be careful, just a few seconds works...don't want to cook your legs!!!)and wrap my leg in that. I try to eat lots of potassium rich foods...Good luck...cramps are SO painful!
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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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Old 07-02-2007, 09:14 AM   #3
Lisa1962
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I had really bad cramps in the beginning - I'm over the 2 year mark - and they are still happening, but not as bad. I'm not sure if it is because my body has gotten used to the Herceptin - or if I don't stretch my legs in my sleep like I used to (that always set off a cramp). I used to love to point my toes and get a good stretch in when I woke up in the morning - and that just spells disaster for me (leg and foot crams) now.
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Old 07-02-2007, 01:07 PM   #4
Gerri
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I had Herceptin every three weeks from the beginning. I experienced leg, foot AND toe cramps! I finished Herceptin in March and still get them occaisonally. Sometimes my toes go into a cramp and they almost bend upward. OUCH!
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Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
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Old 07-02-2007, 03:55 PM   #5
IRENE FROM TAMPA
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Smile leg cramps

Hi Laurie -

I cant really tell you what to do, but I do know what you are going through

I was on Herceptin for about 5 years when I started getting severe leg cramps. I kept telling my docs who kept telling me they had not heard this from Hercepting before. Well they stopped me for a while and the cramps stopped. Went back on it, and they restarted. With me though, I did go quite some time before they began.

I am now on Tykerb/Xeloda and the same thing is happening. This time I get them in my calves, my hands and toes, and the sides just above my hips. All of my blood work is fine, so I guess its just something else to deal with as a side effect. I dont dare stretch my legs at night or I have to quickly jump out of bed step hard to pull those muscles back.

Just keep well hydrated and watch your potass. levels and good luck to you Laurie and everyone else who is suffering from this also.
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Irene from Tampa
1996 - INFILT DUCTAL CAR.W/ LYMPH NODE INVOLVEMENT. ADRIA/CYTOXIN/5FU
1999 - RECURR. TO AUXILA AND 2 TUMORS IN LIVER
TREAT: STEM CELL REPLACEMENT/HERCEPTIN.
2002 - RECUR TO LIVER
TREAT: NAVELBINE, THEN GEMZAR, THEN XELODA.
2004 - TUMORS STILL IN LIVER
TREAT: RFA TO LIVER
STABLE UNTIL
2004 - TUMOR PROGRESSION IN LIVER.
TREAT: RESECT HALF OF LIVER.
2005 - RECURR TO LYMPH NODE OUTSIDE OF LIVER.
TREAT: TAXOL/CARPO/HERCEPTIN. FAILED ON
THIS TRIO. STARTED ON ABRAXANE.
2006 - PROGRESS WITH 2ND TUMOR GROWTH.
TREAT: AUG. BEGAN ON TYKERB/XELODA
TRIAL. CONSIDERED STABLE TO DATE.
2007 - TAKEN OFF OF TYKERB/XELODA TRIAL DUE TO
PROGRESS STARTING TYKERB/AVASTIN.
NOV 2007 - SCANS SHOW PROGRESS TUMOR GROWTH
IN ABDOM. AND TWO NEW TUMORS IN NECK AREA.
BEGAN HERCEPTIN/AVASTIN/TAXOTERE
Feb 08 - Ixempra/Xeloda
June 08 - Her/DM1 trial

"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY."
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Old 07-02-2007, 04:17 PM   #6
Carol H.
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This is an old "wives tale" that has been used for many years to ward off leg cramps. Put a bar of ivory soap under your sheet. We don't know why it works, but who cares as long as you can get some relief. Carol B.
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Right Breast 11-28-06
Lumpectomy
Infiltrating Carcinoma
Stage 1
Grade 11
1.5 cm
Sentinel Lymph Node Neg.
ER-
PR-
Her2+
Fish 2.5 Amplied
KI-67 20%
Radiation= 6 weeks
Refused Chemo & Herceptin
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Old 07-02-2007, 06:51 PM   #7
hutchibk
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I had them on herceptin and I also have them on Tykerb/Xeloda. But, I have ways of keeping them to a minimum... My nutritionist tells me that as much as potassium, it is also a sign of magnesium deficiency. So, I take ultra mineral supplements everyday and there is magnesium with my calcium as well. Another key is staying ultra-hydrated. So I drink lots of water, including some electrolyte water (Smart water) several times a week. Also, when they make me miserable while sleeping, I get up and eat a banana in the moment. It takes about 5 minutes, but it works about 98% of the time!
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-02-2007, 07:34 PM   #8
Lolly
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I had cramps in my toes, calves and diaphram muscles while on all my various chemos + Herceptin. It was pretty bad so my onc suggested daily magnesium supplements which really has helped. I take two 250mg tabs daily. I'm now on Tykerb/Abraxane and still get cramps if I forget to take my magnesium daily.
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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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Old 07-02-2007, 10:35 PM   #9
Jean
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Lauire,
I have had calf, toe, finger cramps while on herceptin. Finished my 1 yr.
in May - still have cramping now and then...I have been taking magnesium
and potassium along with foods that are rich in potassium. They are reeally very painful, I even had the cramping come on when I was driving
in my toes. Had to pull the car over and get out to stand on my feet.
I have had many a night of jumping out of bed in pain to walk the cramps out.

It does improve...hang in there.

Hugs
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 07-03-2007, 05:14 AM   #10
debski
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I have leg cramps at the moment and seem to sweat all night too. Perhaps that's why you lose minerals? Why do I only get the cramps at night?
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Old 07-03-2007, 06:40 AM   #11
Lisa1962
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I wondered why I only got cramps at night - until I realized that I was getting them during the daytime also - but usually recognized the signs and did things to stop them before they got too bad. I'd feel a twinge in my calf and start to stretch that muscle without even realizing it - or if the muscle on the bottom of my foot started to cramp - I'd kick my shoe off and work my foot around.

I guess when I'm sleeping it just happens - by the time I'm awake it's bad enough that I'm muttering "ouch ouch shxt ouch cramp ouch ooo ooo cramp damxxit"
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Old 07-03-2007, 09:24 AM   #12
mke
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I get them too, hands and feet. As others have said, potassium and magnesium supplements seem to help. I finished my year of herceptin and hope that it will end the cramps.
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Old 07-03-2007, 01:00 PM   #13
harrie
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Bananas worked well for me. Also, keeping well hydrated helps.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 07-06-2007, 08:58 PM   #14
LAURIE
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I have noticed a reduction in the cramps in the second week. It was weird not going for my Tuesday treatment every week. I have increased my potassium and magesium intake and cut back on my water pill. This is still so much better than every week. December (end of herceptin) seems so much closer now. thank you all for the suggestions and incouraging words.


"sometimes you can't make it on your own" U2
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Laurie
Diagonsed 8/10/06 (found own lump)at 35
Her 2 +++, er-/pr-
4 A/C 8-29-06 to 11-06
Lumpectomy, node dissection- 11/30/06
Pathology report stage IIIC
1 tumor 3 cm
10 of 15 nodes +
12 Taxol 12/18/06-03/06/07
Herceptin 12/18/06- 12/11/2007 done!!! yeah!!!
33 rads started 3/22/07, done!! yeah!! 5/07/07
Lymphedema diagonsed 2/1/07
BRCA1/BRCA2 negative
port out 1/10/08
pregnant after 6 yeas of trying- due mid feb.
Ryder David Kessel Hunter born feb.6th 2009

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Old 07-06-2007, 10:29 PM   #15
harrie
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Laurie, I agree with you 100%...it is SOOOOOOO nice being off chemo now and just on a 3 wk herceptin schedule!!! Funny though...when I went in for my herceptin, it was so nice to see the staff again. I kinda missed them! I told them they must be a great staff for a chemo pt to say she missed them!!
Maryanne
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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