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07-21-2014, 09:55 PM
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#1
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Update on lymphedema ?
I had posted I was dx with lymphedema a short time ago and the juzo sleeve caused a lump to form on my upper arm so I went to another specialists and he says he doesn't think it's lymphedema? It's definitely swollen but he thinks it's an infection under my skin? Pain when I apply pressure to my under arm between wrist and elbow? So he gave me an antibiotic to take for 3 weeks and will measure again in 6 weeks. Anyone else experience anything like this. I don't trust this diagnoses either. Not terribly worried just odd🌻
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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07-22-2014, 09:53 AM
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#2
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Senior Member
Join Date: May 2010
Posts: 184
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Re: Update on lymphedema ?
Hi Pray, I have never had lymphadema tho I wear a sleeve for lifting and flying. I have had infections in the skin at my nails that seems to cause a backup in lymph. I can actually see what looks like beads running up my lower arm that are tender. Once I had a cellulitis but not swelling per se. I am careful and watch, to catch things early and knock wood have been able to take care of them w oral antibiotics. I have called my family practice in off hours right away. We have 24 pharmacy near by. So I'll start the meds and go see her when they are open again. We have a trustworthy relationship so that may help.
Good luck with yours. Cathy
PS, if I lifted my arm the "beads" got smaller because it helped drainage. Can't hurt to elevate and keep it moving up and down
__________________
3/06 DX stage III er-pr-her2+++ breast, 1+node
age 49 and 364 days
3XAC 4X taxol and herceptin continue herceptin one year
bilat mastectomy w/TRAM
32 rads
9/08 recurrance 4 sternal nodes
mediastinoscopy, able to remove 3
taxotere, carboplatin, herceptin, x6
continue herceptin indefinately
5/10 recurrance in same node/area
mediastinoscopy, removed nodes
added tykerb
27 rads
10/18/10 PET shows inflammation no active disease
8/2011 recurrence one right mediastinal node, xeloda and proton radiation to node.
D/C xeloda due to toxicity
12/5 PET scan clear
2/2012 colon blockage, breast cancer
(never thought it could go there! thought I was constipated)
start abraxane, herceptin, continue tykerb
10/2012 Kidney ablation (renal CA!)
3/2013 CT and biopsy R kidney (BC met to R kidney)
4/4/2013 Begin Kadcyla
7/30/13 Craniotomy cerebellar mets, 1.7cm 3cm
Sept 4-6 post op cyberknife
Sept 23 ablation right kidney (blow up pesky breast ca met)
Oct headaches MRI Oct 10 (only surgical changes ! Yay!)
Short of breath. CT, pulmonary function, echo
New crap in right lung heart good. Pooh!
12/13 DC kadcyla. Begin halaven
2/14 MRI brain NED Yay!
4/3/14 CT mostly stable but breast mets r kidney growing
4/16/14 ablation right kidney again
Continue halaven, tykerb
dc halaven gemzar?
2nd opinion May 14
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07-22-2014, 03:45 PM
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#3
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Update on lymphedema ?
Hoping the meds work for you Pray and this is not Lymphedema and something easily treated.
__________________
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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07-22-2014, 06:17 PM
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#4
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Senior Member
Join Date: May 2006
Location: California
Posts: 668
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Re: Update on lymphedema ?
Dear Pray, If you are not comfortable with the diagnosis, perhaps you should look into another cause for the swelling and discomfort.
Did any of the doctors or nurses mentioned the possibility of cellulitis? Is it red, do you have pain? is it warm to the touch?
Some of us in this organization have developed cellulitis due to poor circulation in the lymphatic system. Did you have your lymph nodes removed? At least you are on antibiotics and that should take care of the problem. Finish them all even if you do start feeling better, as it tends to recur.
Take care,
Adriana
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.
2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.
2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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07-22-2014, 09:03 PM
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#5
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Update on lymphedema ?
I was wondering about cellulitis also. Although maybe all tied together. I have very mild Lymphedema but got cellulitis when arm got irritated by sun exposure. Immediately given Cipro and it worked
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
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07-22-2014, 09:44 PM
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#6
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on lymphedema ?
Thank you ladies for your responses! My arm is not warm, or red. The dr. said he thought it felt hard? Pain only when my arm rest on a hard surface. Time tells all. Also, I had my dermatologists appt. today who said he knows nothing about lymph-edema though if he had to guess he would say it was lymph-edema. (too many guessers lol) I'm allergic to two of the antibiotic groups so I'm actually waiting until Sunday to start the antibiotic. ( I have a big shin dig this Saturday and don't want any surprise reactions) I will let you know how it goes. Thanks again Amazing Women!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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07-22-2014, 09:51 PM
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#7
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Update on lymphedema ?
Gosh don't wait too long to start treating it. Is there an antibiotic which you could begin right away? Seems not good to even be starting one you might be allergic to, ever
__________________
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
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07-22-2014, 09:59 PM
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#8
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on lymphedema ?
I dropped the script off at a brand new pharmacy. (a woman I know opened her own) I can't get it till tomorrow to tell you the name. I only remember its one I haven't had yet. The dr. is ok with me waiting till Sunday. Thanks for caring Bonnie!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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07-22-2014, 10:16 PM
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#9
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Update on lymphedema ?
Okay then!!! You have my permission!
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
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07-22-2014, 10:22 PM
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#10
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on lymphedema ?
LOL! Your the best Bonnie!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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07-23-2014, 05:24 PM
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#11
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Senior Member
Join Date: Nov 2012
Posts: 67
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Re: Update on lymphedema ?
Hi Pray,
I have lymphedema and have a hard area from back of elbow midway up my arm. Am told it is where more lymph fluid pools. I' ve always had it. Of course my whole arm is swollen but that one area is a swollen hard lump. I hope your problem resolves with antibiotics.
__________________
Cathy
Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012
Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
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08-05-2014, 08:24 PM
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#12
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on lymphedema ?
Hi, the antibiotic did not work. We don't beleive there is an infection. In three weeks we will try rapping to see if we can move the fluid out. Bummer still not the worse thing though. Also I still don't trust this dx either.?
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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08-08-2014, 11:58 AM
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#13
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Senior Member
Join Date: Jan 2014
Posts: 109
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Re: Update on lymphedema ?
I have a Juzo sleeve that causes distortion in my forearm and a lump on the back of my upper arm. I've never heard anyone else complain of this, but my arm definitely looks different when I wear that sleeve for a day. I also have a Solidea with double sleeves that doesn't do that weird thing. I ordered the Solidea online, but I bought the Juzo at a local shop that supposedly knew how to measure. I also ordered a gauntlet from them, also Juzo, that is so tight around the thumb that it cuts off circulation. Neither of these items is returnable, which makes me furious since they are so expensive.
I'd advise anyone shopping for sleeves to do so with care. Try on more than one, and by all means ask if you can return them.
Best to all,
Lynne
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014
Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
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08-08-2014, 12:09 PM
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#14
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Update on lymphedema ?
Lynn, that's awful. Since they are not returnable ( but should be!) can you contact the manufacturer directly? Perhaps they could send replacements or a refund
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
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08-08-2014, 02:26 PM
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#15
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Update on lymphedema ?
I heard you should be able to get one measured and made specially for you?
__________________
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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08-11-2014, 06:51 AM
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#16
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Update on lymphedema ?
Thank you Lynn, sounds like we share the same shopping history. I had bought the sleeves then told I didn't have lymph-edema and yes I do twice each now. Its a very expensive to have the wrong dx?
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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09-13-2014, 01:12 PM
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#17
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Member
Join Date: Feb 2014
Posts: 7
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Re: Update on lymphedema ?
Suggest that you obtain a referral to a lymphedema-trained and certified therapist to assess your situation. I cannot diagnose your condition, but I would suggest that a course of complex decongestive therapy (CDT) by a certified lymphedema therapist (CLT or CLT-LANA), and then measurement for a custom (flat knit/seamed) compression sleeve might solve your problem. Custom sleeves are returnable within a month's time if they do not fit. An ill-fitted elastic sleeve can cause more problems than they solve.
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09-14-2014, 05:39 PM
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#18
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Senior Member
Join Date: Jan 2014
Posts: 109
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Re: Update on lymphedema ?
I could not agree more. It's finding a therapist that's the problem. Some "schools" issue a certificate for a two-week online course or something similar. I went to two certified therapists, one of whom was associated with a hospital, and neither one really knew much. I have learned a lot on my own researching the 'net, and I agree that a bad sleeve can do more harm than good. I've also learned that there is an art to wrapping and that it's not just winding the stuff around the arm. I can actually manipulate the fluid pools by adjusting the pressure of the bandages.
I think I'm pretty much on my own at this point, but I'm not giving up. I've got a lead on a therapist in this area and will check her out. Until then, I'm doing the best I can with the three different styled sleeves that I have and my night-time bandaging. I can't believe there is so little research being done in this area - but I guess there's not enough money in it. Sigh.
Thanks for your post. It's good to talk to anyone who knows the problem. :-)
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014
Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
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