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07-05-2010, 04:30 AM
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#1
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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last Herceptin treatment
Hello All,
Well, after 6 years, tomorrow will be my last Herceptin treatment and then I'll take Femara for a few more weeks and Clastoban for 3 ore months.
I'll be given a Petscan once a year and the usual mammo and sonogram.
Keeping fingers crossed. Hope they got the little buggers this time around. Last time they thought they had but now 6 out from recurrence, 10 from 1st time around.
Health and Happiness
hugs and love
Sarah
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07-05-2010, 05:58 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: last Herceptin treatment
Hi Sarah
So glad you posted your news and lovely to hear you are so well.I think you are very brave stopping vit h and your other treatments but want to wish you many, many years of NED.
Ellie
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07-05-2010, 07:58 AM
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#3
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: last Herceptin treatment
Good luck Sarah, keeping my fingers crossed for you too!!
all the best
xo
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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07-05-2010, 08:27 AM
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#4
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Senior Member
Join Date: Jul 2007
Location: Canada
Posts: 2,193
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Re: last Herceptin treatment
Good luck Sarah! AndiBB stopped Herceptin after 10 years
and she's doing great. I know you will too!
__________________
PinkGirl
Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++
Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09
" I yam what I yam." - Popeye
My Photo Album
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07-05-2010, 09:29 AM
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#5
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: last Herceptin treatment
Sarah,
Thanks so much for posting your news and much rest and happiness to you.
karen
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07-05-2010, 11:18 AM
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#6
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Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
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Re: last Herceptin treatment
Sarah,
What great news.... I'm wishing you forever NED.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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07-05-2010, 12:00 PM
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#7
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: last Herceptin treatment
Wonderful news Sarah and hope you do very well on the femara! 
__________________
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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07-05-2010, 01:25 PM
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#8
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Re: last Herceptin treatment
Hi Sarah, There are several of your Her2 sisters that stopped Herceptin after many yrs and so far they are still doing great. Pink already mentioned AndiBB...then there is Steph and Christine that stopped Herceptin after quite a few yrs and they are all doing great.
So may you and NED live happily ever after.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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07-05-2010, 05:28 PM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,808
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Re: last Herceptin treatment
Congratulations, Sarah. A big milestone. Be sure to post on the long-time survivor thread. I also had found the recurrence 4 years after the initial surgery/treatment. I've been doing well the past three years even though I'd only had 22 weeks of Herceptin. Had to quit because of lowered MUGA score.
Take good care of yourself and enjoy the 'freedom'.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement （600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"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." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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07-05-2010, 06:18 PM
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#10
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: last Herceptin treatment
Happy Days! You have done very well and it does take some thinking over to make the decision to stop the drug.
My nails grow so fast and are so strong now! Took a few months, and they weren't too bad, so that came as a surprise.
It is great to not be so closely tied to the cancer center.
"Little buggers" should be bye-bye this time.
__________________
"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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07-05-2010, 09:21 PM
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#11
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: last Herceptin treatment
That's fabulous news! Here's to many, many more years of NED! Thanks for sharing and keeping others positive!
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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07-06-2010, 05:55 AM
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#12
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Senior Member
Join Date: May 2010
Posts: 432
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Re: last Herceptin treatment
All the BEST toyou Sarah
My wife's Onc said nine doses of Herceptin and then Tykerb after a PET scan.
Am hoping for the best in the PET scan
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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07-06-2010, 06:53 AM
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#13
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Member
Join Date: Aug 2008
Location: Atlanta, GA
Posts: 11
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Re: last Herceptin treatment
I am always so happy to read of successful milestones !
I stopped Herceptin after 19 months due to a low ejection fraction (40 %). My cardiologist thinks I may not get back on Herceptin. Can you or anyone comment on recommended length of time on Herceptin for optimal success ? I am NED at last CT scan on April 30 , "remission"since Dec. '08 previously stage 4 . Thanks !
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07-06-2010, 09:07 AM
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#14
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Senior Member
Join Date: Sep 2005
Location: france
Posts: 1,648
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Re: last Herceptin treatment
Hello fellow HER2ers,
Thank you very much for your kind wishes, it touched me greatly. I too hope to be NED forever!!!
I'll look forward to having nails again. Hope the hair on my legs doesn't come back though!!! lol!
I was scared when it was first suggested but now I'm ready and hopeful.
Thank you all of you for being there. I will still be checking in. I couldn't have made it without all of you, I appreciate you all enormously.
Once an HER2 sister, always one.
Health and Happiness
hugs and love
Sarah
__________________
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07-06-2010, 10:39 AM
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#15
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Senior Member
Join Date: May 2010
Posts: 76
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Re: last Herceptin treatment
Congratulations Sarah!
I wish you all the very best; excellent health and peace of mind forever.
Didi
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07-06-2010, 09:01 PM
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#16
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: last Herceptin treatment
That is awesome news!
__________________
 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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07-12-2010, 08:45 AM
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#17
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Member
Join Date: Jun 2010
Posts: 7
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Re: last Herceptin treatment
Hi i have a unique story possibly, let me share it
diagnosed-10/8/09
rbst/lyph node axilla/neck pos for her2
no surgery/radiation
11/09 chemo tax/carbo/hercep
5/10 scan no sign of cancer
6/10 herceptin only for a year
5/10 lyphedema positive in r arm
I am feeeling good getting energy back, but no sure if i should dive right back into all the things i did before so soon or is there still some other surprises to expect?
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07-12-2010, 09:29 AM
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#18
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Senior Member
Join Date: May 2010
Posts: 76
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Re: last Herceptin treatment
Hi Renee,
I hope that you're having a good day. So, if I understand you correctly, you have not had any surgery, yet you have developed lymphedema? Any idea of how this occurred? Did you get an insect bite or infection somehow that caused this?
Here's what I have been told about lymphedema:
From my surgeon (who is very well read and keeps up to date on research worldwide): Exercise, do whatever you like to do, there's no limit on what you can lift, pull or push. Protect your arms and hands with sunscreen, bug spray and wear gloves when gardening or doing any kind of work where you could injure your hands.
From the Dragon Boat Team members in London Ontario (who just won the Canadian Dragon Boat Championships and is made up of women who have finished therapy or are undergoing cancer treatment): The members tend to not get lymphedema and they work out 5 days per week either in the gym or in the boat. The team is made up of women of all ages, from teens to 70 years old. What I have been told is that some were told to not overdo exercising their affected arm, some were told (a few years ago by their doctors) to not lift anything heavier than 5 pounds, some were told not to push or pull more than 5 pounds; yet here they are (not doing what they were advised to do) with such a great fitness level and in large part not affected by lymphedema. Their team is called "Row Bust" and you can check them out online as they are inspiring.
From my Registered Massage Therapist: She wouldn't treat me while undergoing chemotherapy, but now has taught me lymphatic drainage techniques, should I need them. The technique is simple and can be done by oneself. Elevating the arm is very important to help to drain it.
From my Family Doctor: Referral to Physiotherapy for exercises for prevention.
That's the extent of what I know of lymphedema, other than some people get fitted for an elastic 'stocking' to wear on the affected arm.
Oh, I do know one person who had lymphedema, but it was a few years after lymph node removal. She wore the stocking, did exercises and had lymphatic drainage and she recovered after 4 months. That's the good news.
I don't know if this helps in anyway, but I thought I would share what I know.
Take care,
DiDi
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