HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 05-04-2012, 02:57 AM   #1
KsGal
Senior Member
 
KsGal's Avatar
 
Join Date: Dec 2011
Posts: 579
and then came...lymphedema.

Well, I was feeling pretty excited about my scans being so positive, and then also having only one more chemo treatment this round before a break...and I wake up one morning and my index finger looks like, I don't know, a carrot. LOL! No, I just had a big swollen index finger. I didn't know what it was. For the past couple days I now have "Mickey Mouse" hand. I know have an appointment with a lymphedema specialist. Anyone who has had this want to share? Im pretty bummed, as so far I have made it through this working 45 hours a week and being able to keep my insurance. Now the impression I am getting is I might have to quit my job due to this lymphedema (I use my arm/hand a lot at work).
__________________
October 2011-diagnosed er/pr- Her2 + grade 3 age 43
Nov 11-double mastectomy with expanders-stageIIB
Dec 11-mets to liver :( stage IV
Jan 12-taxotere/carbo for 6 treatments/herceptin for 1 year
March 12-After TCH one tumor left in liver, 1.2 cm.
June to November 12-Stable-Herceptin only.
December 12-Five brain lesions. Whole brain radiation and the dreaded steroid ordeal.
Jan 13-Body clear, brain 2 lesions.
May 13-Added Tykerb/Herceptin continued.
August 13 to Feb 14 NED Tykerb and Herceptin.
March 14-One mets discovered in brain. Check in two months
April 14- one brain met 8mm. On to Cyberknife!



I can do all things through Christ who strengthens me – Philippians 4:13 NKJV.
KsGal is offline   Reply With Quote
Old 05-04-2012, 07:08 AM   #2
snolan
Senior Member
 
Join Date: May 2011
Location: El Paso ,Tx
Posts: 370
Re: and then came...lymphedema.

I have worked a lot with lymphadema patients. Unfortunatly once you have it you will always have it. But it can be controlled, once you start treatment the swelling can be reduced an maintained to where you should be able to perform normal activities depending on what you use your hand for. Be compliant with wearing your wrapings or compression garments as this is what will keep the swelling in check. Hope all goes well for you.
__________________
dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
snolan is offline   Reply With Quote
Old 05-04-2012, 07:53 AM   #3
Debbie L.
Senior Member
 
Debbie L.'s Avatar
 
Join Date: Jul 2006
Posts: 391
Re: and then came...lymphedema.

Dear KS. Dangit, that wasn't a nice morning surprise for you (although the carrot comment made me laugh). I feared lymphedema almost more than cancer, in the early days. I did end up with a mild case that has been easily controlled these 11 years, although as Snolan said, it hasn't disappeared altogether.

I hope yours will be easily manageable also. I hope that appointment with the therapist is soon. If it's not, and you feel the swelling is getting worse, call and get them to bump up your appointment, because the sooner you get on it, the easier it will be to get a good response and keep it under control.

I wouldn't think you'd have to quit your job. What kind of arm/hand movements are involved? I learned quickly what kinds of things aggravated my arm, but instead of having to quit doing those things, I still do them but always with close attention to the exercises and manual lymph drainage (your therapist will teach you about that) that works best for me and my arm.

I do think that each case of lymphedema is different -- different triggers, different things that help the most. And so it will take awhile for you to learn what works, and what doesn't, as you manage your lymphedema. Some people get it only in their hand, others will have giant upper arms with the hand unaffected, still others it's in the chest or breast. Or all of those places.

If your lymphedema therapist seems too autocratic, with lots of mandates as to what you MUST do or not do -- I'd suggest that you get a second opinion. Lymphedema research is a work in progress. There are a lot of leftover mandates from the days before we had ANY research. The mandates were formulated by people with the best of intentions but some of them, upon closer investigation, just do not seem to be true.

Sorry to run on. Lymphedema is a favorite topic of mine. I even took the class to be a therapist, before discovering that while RNs can be certified as therapists, they cannot be reimbursed for their work (sheesh). But that was 10 years ago and there have been lots of advances in our knowledge since then.

Good luck and keep us posted.

Debbie Laxague
Debbie L. is offline   Reply With Quote
Old 05-04-2012, 09:53 AM   #4
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,143
Wink Re: and then came...lymphedema.

Sorry about the pesky lymphedema. Hopefully the therapist can give you some exercises to help.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 05-06-2012, 02:33 PM   #5
chicagoetc
Senior Member
 
chicagoetc's Avatar
 
Join Date: Sep 2007
Location: Near Chicago
Posts: 196
Re: and then came...lymphedema.

Lymphedema is not fun. Have hope. It is generally controllable with the right treatment... Hopefully you have a lymphedema trained physical therapist you can access.

Melanie
__________________
Diagnosed: 7/13/07 (or 7/7/07)
Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection
Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes
Portacath: 9/7/07
Chemo: 9/14/07 with AC (every three weeks) for four rounds
Physical Therapy for ROM Loss / "Cording" (but not Lymphodema)
Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol)
Radiation: (28 rads from 3/07 to 4/07)
Reconstruction (silicone implant)
Herceptin done (10/08)
Cognitive Remediation (11/08 - 12/08)
Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis)
Lymphedema Rehab 9/10/10 - 11/10/10
Six years NED...7/7/2013!
chicagoetc is offline   Reply With Quote
Old 05-06-2012, 10:35 PM   #6
vlcarr
Senior Member
 
vlcarr's Avatar
 
Join Date: Jun 2009
Posts: 341
Re: and then came...lymphedema.

I so feel your pain. I've been living with lymphedema since radiation. I'm back with my therapists twice a week now. I wish I knew why it flared up this time, but have no clue. I will not lie. I hate it. It's a daily reminder & just prevents me from moving on. Mine is worse in the heat, used to love summer, now I dread it. It has changed who I was much more than the cancer itself. Don't mean to be negative, but honest. I can only speak for myself. Then I feel guilty for feeling this way, because I "should" be happy I'm alive. I saw something recently that called lymphedema breast cancer's dirty little secret.

With all that out of the way.....I wear a compression sleeve all day, every day & have since I developed it during radiation, I wear a sleeve at night & I have a Flexitouch machine that I use pretty much every day. My arm size is not bigger but I have no doubt it would if I did not constantly stay on top of it. I am a good patient even if I hate it. I work on a computer all day. This last flare is the worst I've had. I have to take frequent breaks due to the pain. I am going to look into a program the Y has for bc survivors & try to get a more formalized exercise program to see if that will help. I do exercise the arm but not as regularly as I should. With a full time job and an hour a day in the machine it's a time thing. I feel like my life is consumed by trying to manage it & I resent not having time for a life, so yeah, I fall down with the exercises & admit that. I spoke to my boss on Friday about taking leave to do some of this during the day but I don't know how long I can keep that if it doesn't get better. There are VERY good therapists out there but do shop around. I switched from the ones I had originally. The hospital that treated my bc is the best here, but their lymphedema program is not. I've also found where you get your garments & bras is also very critical. I also have it in my chest & side as well so I also use swell spot. Sorry to go on & on but your post hit at such a frustrating time for me. I know more about lymphedema than I care to but please feel free to IM me if you ever feel the need.

I also travel from time to time & wear a gauntlet when I do that. I so hope you get good results with your therapy.
__________________
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
vlcarr is offline   Reply With Quote
Old 05-06-2012, 11:07 PM   #7
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,608
Re: and then came...lymphedema.

I developed lympedema after getting some very tiny bug bites while picking figs in the back yard. The redness crept toward my elbow before I went to the doctor and was put on antibiotic/IV immediately for cellulitis. After the swelling was down and the inflammation was gone, I was fitted with compression sleeve and glove. I've been wearing it faithfully everyday until earlier this year when I felt everything's pretty much back to 'normal'. So I only wear them when I'm out in the yard (for protection) and/or when I'm doing 'heavy' lifting such as carrying a barrel of water to the backyard.
__________________
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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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
Jackie07 is offline   Reply With Quote
Old 05-18-2012, 10:20 PM   #8
KsGal
Senior Member
 
KsGal's Avatar
 
Join Date: Dec 2011
Posts: 579
Re: and then came...lymphedema.

I have an appointment with the lymphedema specialist on the 25th. Mine is still pretty much confined to my index finger thumb and palm of my left hand. Im am so sorry to hear how hard lymphedema has been for you all. UGH! I had an appointment with my oncologist, where I told him I was developing lymphdema, and he looked at me and said "That is not lymphedema." So I asked what it was, and he said "Its some swelling. We do not see a puddle and call it an ocean." What?? Im doing the lymphdema massage and exercises I learned by watching youtube, and it doesn't seem a lot better, but it has not progressed either. I wake up with a regular size hand, but any activity at all just sets it off. I had this bizarre concept that women that got lymphedema where the ones who had many nodes removed, so of course I was wrong about that one and now I am feeling pretty whiney about the whole darned thing.
__________________
October 2011-diagnosed er/pr- Her2 + grade 3 age 43
Nov 11-double mastectomy with expanders-stageIIB
Dec 11-mets to liver :( stage IV
Jan 12-taxotere/carbo for 6 treatments/herceptin for 1 year
March 12-After TCH one tumor left in liver, 1.2 cm.
June to November 12-Stable-Herceptin only.
December 12-Five brain lesions. Whole brain radiation and the dreaded steroid ordeal.
Jan 13-Body clear, brain 2 lesions.
May 13-Added Tykerb/Herceptin continued.
August 13 to Feb 14 NED Tykerb and Herceptin.
March 14-One mets discovered in brain. Check in two months
April 14- one brain met 8mm. On to Cyberknife!



I can do all things through Christ who strengthens me – Philippians 4:13 NKJV.
KsGal is offline   Reply With Quote
Old 05-19-2012, 09:13 AM   #9
vlcarr
Senior Member
 
vlcarr's Avatar
 
Join Date: Jun 2009
Posts: 341
Re: and then came...lymphedema.

Ran across this yesterday. It's long but says everything I've thought & felt. The first study I've seen of this kind.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2795115/
__________________
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
vlcarr is offline   Reply With Quote
Old 05-19-2012, 01:37 PM   #10
valleygirl
Senior Member
 
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 87
Re: and then came...lymphedema.

should everyone who has had lymph nodes removed wear a compression sleeve? was wondering if it would help to prevent it. just wondering because my dr never talked about the compression sleeve
valleygirl is offline   Reply With Quote
Old 05-20-2012, 12:55 PM   #11
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,099
Re: and then came...lymphedema.

Valleygirl, it is my understanding that you only need a sleeve if you exhibit symptoms of lymphedema. I saw a specialist when I developed very mild case in one arm. She suggested the sleeve for flying. And only on the affected side.
It is important to avoid sunburn, hot tubs, bug bites. Things that might set it off. Once my arm got very hot and swollen and I needed Cipro to avoid cellulitis... Most of the time I am totally unaware because my case is so very mild.
At the beginning I was given massages by a specialist technician.
Anyway, as long as you dont have it, you dont need to treat it! In fact, I think I heard that the sleeve would be detremental if worn without cause
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
BonnieR is offline   Reply With Quote
Old 05-20-2012, 01:35 PM   #12
valleygirl
Senior Member
 
Join Date: Jan 2012
Location: Millsboro, Delaware
Posts: 87
Re: and then came...lymphedema.

Thanks for the imformation Bonnie!
valleygirl is offline   Reply With Quote
Old 05-20-2012, 04:24 PM   #13
BonnieR
Senior Member
 
BonnieR's Avatar
 
Join Date: Jun 2007
Posts: 2,099
Re: and then came...lymphedema.

Oh, don't let them use the affected arm for BP or blood draws anymore. I got a small medic alert bracelet to remind everyone
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
BonnieR is offline   Reply With Quote
Old 05-21-2012, 04:54 AM   #14
Sheila
Senior Member
 
Sheila's Avatar
 
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,508
Re: and then came...lymphedema.

I am viligent about wearing my sleeve and gauntlet , and have kept mine in check by doing so....i developed lymphedema 5 years into my BC journey...after wearing the medical sleeves for a year or two, I discovered Lymphedivas...a sleeve company started by breast cancer survivors....I love their sleeves and gloves (gauntlets) , and my insurance company covers them!

www.lymphedivas.com
__________________
"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
Sheila is offline   Reply With Quote
Old 10-15-2012, 02:29 PM   #15
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,608
Re: and then came...lymphedema.

Received this message from CancerConnect:

Managing Lymphedema: Web Chat with Stephen Edge, MD, FACS and Kathleen Fassl, PT

Dr. Edge is the Alfiero Foundation Endowed Chair in Breast Oncology, Medical Director of the Breast Center and Chief of Breast Surgery in the Department of Surgical Oncology at Roswell Park Cancer Institute. Ms. Fassl is the Co-Director of Lymphedema Management Services at Roswell Park Cancer Institute. Click here for Dr. Edge’s bio and here for Ms. Fassl’s bio.
Lymphedema refers to swelling due to an accumulation of lymph fluid in a part of the body. The most common cause of lymphedema is removal of lymph nodes for the staging and treatment of cancer, including breast cancer, melanoma, and other types of cancer. More extensive removal of lymph nodes is more apt to cause lymphedema than the removal of only a small number of nodes (known as a sentinel lymph node biopsy), but lymphedema can occur following either procedure. It can also affect individuals who have had radiation to their lymph nodes or who have a tumor that blocks lymph drainage.
On October 30, 2012 at 6:00pm EST you will have the opportunity to ask the experts, Dr. Stephen Edge and Kathleen Fassl, PT about how lymphedema occurs and how best to manage it. Dr. Edge is actively involved in clinical research and continues to lead innovative studies in breast cancer, and Ms. Fassl, a trained lymphedema specialist and a breast cancer survivor herself, manages many patients dealing with lymphedema through physical therapy.
Following the presentation, there will be a live Q&A. Click here to submit a question to Dr. Edge or Ms. Fassl that will be answered during the Live Web Chat (time permitting). Please note that we will do our best to respond to all questions during the 30-minute live Q&A portion of the program. Thank you for your participation. The Live Web Chat is not intended to be a substitute for healthcare professional medical advice, diagnosis, or treatment. Speak to your healthcare provider about any questions you may have regarding your
__________________
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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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
Jackie07 is offline   Reply With Quote
Old 10-15-2012, 05:09 PM   #16
carlatte7
Senior Member
 
Join Date: Jun 2012
Posts: 113
Re: and then came...lymphedema.

Argh! Me too---just yesterday. Im down to 2 rads and now- "swelling" but seeing lymphedema specialist this week. Good luck!
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year annivesary of last Herceptin.
carlatte7 is offline   Reply With Quote
Old 10-17-2012, 11:13 PM   #17
KsGal
Senior Member
 
KsGal's Avatar
 
Join Date: Dec 2011
Posts: 579
Re: and then came...lymphedema.

Thank you Jackie! Just an update, I still have lymphedema. It is only really noticeable in my index finger and thumb on the side where I had my nodes removed. It looks ridiculous, but doesn't feel bad and has not spread, so far. ((hugs)) to everyone who had had to deal with this...
__________________
October 2011-diagnosed er/pr- Her2 + grade 3 age 43
Nov 11-double mastectomy with expanders-stageIIB
Dec 11-mets to liver :( stage IV
Jan 12-taxotere/carbo for 6 treatments/herceptin for 1 year
March 12-After TCH one tumor left in liver, 1.2 cm.
June to November 12-Stable-Herceptin only.
December 12-Five brain lesions. Whole brain radiation and the dreaded steroid ordeal.
Jan 13-Body clear, brain 2 lesions.
May 13-Added Tykerb/Herceptin continued.
August 13 to Feb 14 NED Tykerb and Herceptin.
March 14-One mets discovered in brain. Check in two months
April 14- one brain met 8mm. On to Cyberknife!



I can do all things through Christ who strengthens me – Philippians 4:13 NKJV.
KsGal is offline   Reply With Quote
Old 10-18-2012, 01:26 AM   #18
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,608
Lymphedema webchat on Oct 30th

http://cancerconnect.com/rpci-lymphedema-webchat/
On Tuesday October 30th, at 6 PM EST Dr. Stephen Edge and Kathleen Fassl, PT from Roswell Park Cancer Institute will discuss and field questions on managing lymphedema on CancerConnect. Dr. Edge is the Medical Director of the Breast Center and the Chief of Breast Surgery in the Department of Surgical Oncology at Roswell Park Cancer Institute. Ms. Fassl is the Co-Director of Lymphedema Management Services at Roswell Park Cancer Institute. Click here for Dr. Edge’s bio and here for Ms. Fassl’s bio.
Fill out the form below to pre-register for the Web Chat and/or to submit a question to Dr. Edge and Ms. Fassl that will be answered during the Live Web Chat (time permitting). Please note that we will do our best to respond to all questions during the 30-minute live Q&A portion of the program.
CancerConnect is a safe and private way to connect with others in a fully-moderated setting which provides a place for patients and caregivers to share experiences, offer support, and have access to up-to-date and medically reviewed information on cancer treatment. Join the conversation now by registering or logging in.

[You probably need to get a [Free] CancerConnect user name/password before registering/participating in the Webchat.]
PT= Physical Therapist
__________________
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
Cntrl Neurocytoma 4x5x6.5 cm Craniotomy 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infert. tmts 99 > 3 uterine fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmpctmy SLNB+1 71703 6 FEC 33 R Tmxfn
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - cmprssn slv & glv
H w x 4 MUGA 51 D, J 49 M
Diastasis recti (Yoga)
Tmxfn Bone scan
Irritable bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hepatic hemangioma
Vertigo
GI - > yogurt
hyst/oo 011410
Exemestane 25 mg tab 102912
DEXA 1/13

"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; 10-18-2012 at 04:06 AM..
Jackie07 is offline   Reply With Quote
Old 10-18-2012, 03:04 PM   #19
carlatte7
Senior Member
 
Join Date: Jun 2012
Posts: 113
Re: and then came...lymphedema.

Saw the lymphedema PT today. My case is very mild, but the level of pain is NOT relative to the amt of swelling! Yow! Pain and twangy nerves from elbow to fingers. My fingernails are throbbing, almost like they did with taxotere. She taught me massage techniques, showed me some exercises, and measured for my sleeve. (We are leaving for a week in Haiti, and she recommended it for flight.). I just got done with rads yesterday. .
__________________
Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year annivesary of last Herceptin.
carlatte7 is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 10:15 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2014, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter