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Old 03-06-2010, 08:46 AM   #1
Skip
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Location: Riverside, CA
Posts: 19
The good week

The first 10 day after chemo, not good for my wife
The last week to 10 days before the next chemo treatment are good Is this how it goes for most people?

My wife had 16 nodes removed from her right side arm pit area. She was told that in order to fly she would need a compression sleeve.They warned her about a condition called lymphoma or lymphodema? Swelling of her right arm, the nurse said "you don't want to get this". How common is this? Has anyone here dealt with this condition?If so what do you do to prevent this from happening?

Seems like there is something to learn about cancer everyday, it never ends.I want to thank everyone for their help. Its eased our minds some and made our day easier.
THANKS!
__________________
Wifes Dx:
Found tumor 11-09
Biopsy 11-09 positive: IDC Stage 4 grade 3 Her2 +, 3 nodes of 16 positive.
Surgery 12-09
CT scan: liver mets
MRI of Head: clean
Bone scan: clean
1st treatment: 1-28-10
Taxotere & Herceptin every 21 days
6 rounds of Taxotere
Herceptin every 21 days (on going)
Liver mets...GONE!
CT scans,bone scans & MRI's NED
NED to date
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Old 03-06-2010, 09:18 AM   #2
Mary Anne in TX
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Re: The good week

Google it because there is new information just out that contradicts the past recommendations. ma
__________________
MA in TX.
Grateful for each and every day....

Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 03-06-2010, 12:59 PM   #3
Jackie07
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Re: The good week

About chemo:

I believe the 3 week cycle is designed in a way that the 3rd week allows us to recover - thus no side effect to most of us. Chemo drugs target 'fast-growing' (cancer) cells and that's why hairs and mucus linings (on tongues, digestive tracts...) are affected because they are reproduced every couple of days or weeks. And when chemo destroys those linings, we get the kind of side effects that you have described.

Her doctor/nurse should be able to monitor her condition and give her necessary 'supplement' such as shots to increase red blood cell or white blood cell counts. They should also have other medicine available for treating/easing skin problems and nausea problems (or any other problems)

About compression sleeve/glove

I have a total of 12 lymph nodes taken from the two breast cancer surgeries since 2003 (3 + 9) I started wearing compression sleeve/glove when I got cellulitis after having been bitten by some very tiny bugs in our back yard picking figs 2 1/2 years ago.

I wear them at least 8 hours a day. I can do just about anything with the glove and sleeve on. (Played ping-pong two years ago when I was teaching in a local high school.) But I try not to do anything strenuous for a prolonged period of time.
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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

Last edited by Jackie07; 03-06-2010 at 02:21 PM..
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Old 03-06-2010, 01:01 PM   #4
Becky
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Re: The good week

Hi Skip

I'm glad your wife is doing better and that you know when the good periods will be (then you know when you will be able to do things and know she will be feeling okay).

Lymphedema is a difficult thing to figure out. Statistics say that about 25% of breast cancer women will get some form of this (from the removal of the lymph nodes). It is not associated with the amount of nodes removed so it does not matter if only one node was removed or 40, you are at risk.

Of course, that said, none of us know which of us might have a problem. The best thing to do is be cautious. Air flight could be a problem. Many on this board know that I am flying 6-8 flights per month for work so this was a huge concern for me. I did get a sleeve and a glove too. They need to be replaced yearly and I did get them replaced. Then oddly, I forgot to bring the sleeves to the airport a couple of times. Nothing happened so I started experimenting and now I don't wear the compression sleeve/glove. The longest I've gone (flight wise) is to California (live in NJ so about 5 1/2 hr flight). I do think if I ever have to go internationally (like Hong Kong or China) where I am in the air 15+ hours, I think I will wear them just to be save.

Other things to consider - repetitive movements, weight lifting etc - work up to weights slowly and take a break if vaccuming a large home (I am a right handed, right side gal). Log onto the lymphedema network site online.

Loads of information. Also, you wife should never get a needle in that arm or have blood pressure taken on that arm either.

Have a great weekend.
__________________
Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-06-2010, 02:43 PM   #5
schoonder
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Re: The good week

Skip,
Jackie07 mentioned that frequent dividing cells can play a role in the chemo's performance.
An other consideration is the time drug remains active in the system after the infusion. If drug's half-life is about 10 days, then the final 11 days, time prior to the next treatment, a slowly decaying drug (smaller in quantity) will be easier to tolerate. By the time next injection is scheduled, system will pretty much have cleared residuals.
Surely there are more reasons to select a 3 weekly treatment cycle, like if there isn't a significant improvement in a weekly doding regimen, it's much easier on patient to make that doctor's visit once every three weeks.
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Old 03-06-2010, 03:26 PM   #6
Jackie07
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Re: The good week

My 3-week Herceptin was changed to weekly when my MUGA dropped significantly. So I think the weekly infusion also takes into account of the potential less heart damage. Lighter dose = less damage. Though in my case, the MUGA score went further down anyway.
__________________
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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Old 03-07-2010, 09:04 AM   #7
freyja
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Re: The good week

What you describe is very common. I used to plan to be pretty low down for a few days after treatment, and scheduled the things I had to do for the week before treatment.
Lymphedema is a risk, but doesn't always happen to everyone. I had 17 nodes removed and just spent 24 hours flying home from Uruguay, and no swelling. She does need to be cautious of cuts and injuries to that arm though. That's when problems can start. Just keep some neosporin around to help treat scrapes and scratches and gardening gloves if she plans to be pulling any weeds!
Thanks for keeping in touch and being there for her so supportively. Treatment can work. Keep it up.
Celeste
__________________

"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)

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Old 03-07-2010, 09:15 AM   #8
Lori R
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Re: The good week

Skip,
On this one, my advice is to be an informed observer. I had 14 nodes removed and have not had to deal with Lymphodema. (YEA!!!! Hoping your wife does as well) I was cautious about what I lifted and also was faithful with the exercises to get flexibility and movement back in the area.

I recently enjoyed a couple of vacations requiring lengthy flights ( London and across U.S.) I did not require a compression sleeve and all was well. (OK...I had a panic attack mid-atlantic about not wearing a sleeve but it worked out)

I would recommend monitoring your wife's progress and at the first signs of any swelling, go to a lymphodema specialist. They offer such services as SPECIFIC massages, access to compression garmets etc.. DO NOT!!!!! use an untrained massage therapist.

Keep us posted!!!
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 03-07-2010, 01:37 PM   #9
Skip
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Join Date: Feb 2010
Location: Riverside, CA
Posts: 19
Re: The good week

Thanks to all for your input, its greatly appreciated.
Lori R. I'll show Florence your signature, your Dx and begining treatment is similar to hers. How was the Taxotere for you? Her first dose was terrible.

Thanks everyone.
__________________
Wifes Dx:
Found tumor 11-09
Biopsy 11-09 positive: IDC Stage 4 grade 3 Her2 +, 3 nodes of 16 positive.
Surgery 12-09
CT scan: liver mets
MRI of Head: clean
Bone scan: clean
1st treatment: 1-28-10
Taxotere & Herceptin every 21 days
6 rounds of Taxotere
Herceptin every 21 days (on going)
Liver mets...GONE!
CT scans,bone scans & MRI's NED
NED to date
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Old 03-07-2010, 06:14 PM   #10
WolverineFan
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Re: The good week

Hey Skip,

Sorry to chime in late, but I haven't been on the board in a few days. First off, I'm sorry you have to be here, but you will find a wide band of support for both you and your wife. I love so many things about this site, but the support and inspiration you will find compares to nothing else.

I agree with Lori, that you have to be informed. My surgical oncologist actually sent me to a "lymphademia therapist" before my surgery to review what lymphademia is and what things can be done to prevent swelling. I only had four nodes taken out, but I wear my sleeve anytime I work out or fly, which I do regularly for work. It initially was a pain, but I've gotten used to it, and don't pay much attention to it at all anymore. Its just something that I have to do.

Please take care and keep us posted on how you and your wife are doing. You two will be in my thoughts and prayers, and I hope that your wife does ok on the chemo.
__________________
Hayley
Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 03-10-2010, 07:23 AM   #11
Sheila
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Re: The good week

Skip
There has been alot of controversy over "the sleeve and flying, and it is ever changing....I wear one, although I dont fly alot...just an extra caution....your wife is so lucky to have you as her support person!
Hoping things are getting easier each time for her
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 03-10-2010, 03:19 PM   #12
vlcarr
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Re: The good week

Hey Skip,

I just wanted to agree with what Hayley said. I went for physical therapy after my mastectomy and received myofasial release therapy. This was wonderful. They do a special type of massage on your arm and on the actual scar. She also gave me exercises to do at home to help with healing and getting back range of motion. My surgeon recommended this for me at my 6 week check up. The therapist told me they are trying to work with women sooner versus waiting until problems develop and then trying to fix them. You can google it and read about the purpose but it was a huge help to me. The therapist needs to be trained in it.

After about 3 months of that therapy, I brought up lymphedema to my therapist, so she arranged for me to have 3 sessions with that therapist. She told me she was not a certified lymp therapist so she sent me to one at the same facility who was.

I've had 3 sessions with her which were wonderful. My husband went with me to one of them so she could show him how to do the massage on my arm. She actually had him do it on her arm so he could a feel for the amount of pressure to apply. She also gave me exercises to do and showed me how to do self massage. I know have a compression sleeve (a script from my surgeon) and a gauntlet.

All of this is being done for prevention as I don't have lymphedema. I'm just trying to be proactive and do what I can.

I have found all of this to be very beneficial and I feel much better educated. My insurance paid for all of the sessions.

You seem to be very involved with your wife's care, as my husband is, so I thought this might be something you would be interested in. When my husband could he went with me to all the sessions so he could watch and learn as well.

Best of luck. Your wife is lucky to have you!
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 03-10-2010, 03:38 PM   #13
Westcoastgirl
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Posts: 128
Re: The good week

Hi Skip,
It sounds like things are going better for the both of you. You will soon be an old hand at it and then before you know it you are done. We look ahead at diagnosis and think we cannot handle it but then almost in the blink of the eye it is three weeks and then three weeks again and then you are done. The book, "Lymphedema; A Breast Cancer Patient's Guide to Prevention and Healing" by Jeannie Burt and Gwen White is excellent. It educates, helps put things in perspective and also helps you understand the seriousness of what might happen so you can take precautions where necessary. I wear my sleeve to work out with wts. I am careful when cleaning house not to be too repetitive with my arm and I am careful when carrying bags of groceries. I avoid bug bites and sunburn as well. The steroids during the first sessions of chemo can cause some water retention so I got in the habit of taking off my rings for the first week after treatment. It upset me at first as I thought it was lymphedema. In the book they give you instructions to do self or partner lymphatic massage. It helps. You can also go to a website found in the book (http://www.vodderschool.com/find_a_therapist) to find qualified Massage Therapists in your area that have been trained in lymphatic massage. Even if your wife does develop lymphedema there is much than can be done for her so look at prevention and hope for the best. Carolyn
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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