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Lymphedema #191253
11-23-2015 08:06 PM
11-23-2015 08:06 PM
Joined: Nov 2015
Posts: 3
Oregon
T
TotalDuck Offline OP
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TotalDuck  Offline OP
Member
T

Joined: Nov 2015
Posts: 3
Oregon
Hello Cancer Peeps:

I am finding little information about Lymphedema on the forum. Am I one of the unlucky ones who has significant Lymphedema issues.

My neck and throat fill with fluid. My throat feels very restricted. Sometimes it feels like I won't be able to breathe. The constriction of my throat makes swallowing difficult. Lymphedema plus no taste plus no saliva plus no appetite makes eating next to impossible.

I am 14 weeks from the end of radiation.

I have been going to physical therapy for ten weeks. The first four weeks I went once a week. Since then I go to PT twice a week. The PT place I go to now has a vacuum type machine that lifts the skin to promote fluid movement. They taught me how to do Manual Lymph Drainage massage which I do several times a day.

I've been doing what I am told to do but basically there has been no improvement in the Lymphedema. Does anyone have any comments or suggestions?


Russ M.
SSC HPV 16
BOT robotic surgery April 2015
ND April 2015
Chemo and 33 radiation treatments June & July 2015
Re: Lymphedema [Re: TotalDuck] #191254
11-23-2015 09:40 PM
11-23-2015 09:40 PM
Joined: Jun 2015
Posts: 29
South Carolina
H
HorseGirl Offline
Contributing Member (25+ posts)
HorseGirl  Offline
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Joined: Jun 2015
Posts: 29
South Carolina
Are you also wearing a compression mask? My mom had significant Lymphedema after her second surgery and had massage by the PT and at home. If you're not wearing a mask, it may be worth asking your PT about them. My mom's PT stressed that compression is an important aspect of Lymphedema treatment along with the massage. Also if you haven't already, you may want to check in with your doc again just to keep him or her aware that you've not yet seen improvement. I would definitely report any increase in pain. It's probably going to just take time, but my thought is it wouldn't hurt to have a check up.


Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind




Re: Lymphedema [Re: TotalDuck] #191263
11-24-2015 05:59 PM
11-24-2015 05:59 PM
Joined: Jun 2015
Posts: 15
Il
N
Neumann Offline
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Neumann  Offline
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Joined: Jun 2015
Posts: 15
Il
Sorry your going thru this discomfort. My husband finished treatment in Jan 2014 . He had lymphadema in his neck and is was really pronounced under his chin. He kept gently messaging. He saw a PT twice and she showed him how to do the message. He also ordered on line a sort of chin strap with compression. He wore it for a little while at home. He just kept messaging. I would say the lymphadema subsided with in 6 months. His neck has bulked up nicely with muscle and he only has a little bit of a turkey neck. My husband is almost at the two year mark and he looks great and feels pretty darn good. Hope u feel better soon.


Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
Re: Lymphedema [Re: TotalDuck] #191313
12-04-2015 03:26 PM
12-04-2015 03:26 PM
Joined: Sep 2012
Posts: 35
NJ USA
L
lynney0814 Offline
Contributing Member (25+ posts)
lynney0814  Offline
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Joined: Sep 2012
Posts: 35
NJ USA
Hi- I had a Neck Dissection in January of 2013. I still have Lymphedema of the both face and neck, along with areas that are either numb, or hyper-sensitive. I went to 3 Physical Therapists before I could find one who was even willing to work on the affected area (most were trained in the arm/breast area, and I appreciated that they didn't use me as a "guinea pig" to practice on). The PT I finally found was good, and we keep trying new therapies together. The message is, it may take some time and leg work, but if you go to someone, and after 2-3 visits, your gut is telling you that they really don't know what they're doing, then they most likely don't. If possible, get in touch with a Cancer Center, and see if they can refer you to someone in your area, or if you can to there for treatment.


Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
Re: Lymphedema [Re: TotalDuck] #191332
12-06-2015 11:28 PM
12-06-2015 11:28 PM
Joined: Nov 2014
Posts: 66
Q
QueenKong Offline
Supporting Member (50+ posts)
QueenKong  Offline
Supporting Member (50+ posts)
Q

Joined: Nov 2014
Posts: 66
I have lymphedema in my neck and face and am 9 months out from finishing treatments. I went to see a PT who massaged and trained me with massage. She also helped me find a collar to order as my shitty insurance, aetna, wouldn't pay for a custom one. I think if I had that, things would be better. The one I bought from amazon comes off every night while I sleep so benefits are null there.

The massage and stretching I do every morning and sometimes through out the day as it builds up. I take a shower in the AM and go through the regiment, I am sorry if I skip this. If it gets bad, I can feel it closing around my throat, it feels chokey and painful. Some days are worse than others and I think diet as well as exercise makes a difference. I have some saliva back, that's pretty exciting. PM me so I see it if you want me to go through the steps of the massage.

Get in to see a PT asap that knows the techniques because everyone is different.




HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Re: Lymphedema [Re: TotalDuck] #196766
07-14-2018 01:27 PM
07-14-2018 01:27 PM
Joined: Jul 2018
Posts: 5
MN
L
LJM Offline
Member
LJM  Offline
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L

Joined: Jul 2018
Posts: 5
MN
If any of you, who have commented on lymphedema, still come on this site please message me. Thanks!


Lori
Biopsy 12/2017 microinvasive carcinoma measures 0.25 mm
Partial tongue removed & 29 lymph nodes neck dissection
Trying to accept my new normal
Re: Lymphedema [Re: QueenKong] #198677
07-10-2019 07:03 AM
07-10-2019 07:03 AM
Joined: Jun 2019
Posts: 7
UK 🇬🇧
J
JujiLow Offline
Member
JujiLow  Offline
Member
J

Joined: Jun 2019
Posts: 7
UK 🇬🇧
Hi QueenKong,

not sure if you still come to the site, but please if you do, would you mind messaging me the steps for the lymphodema massage?

Thanks in advance 🙏


SCC Stage 3,
RND,
RT, 6weeks - 30 sessions
Partial Glossectomy, 03/03/19
2/3s of my tongue removed and reconstructed using a skin graft from left thigh.
Xerostomia
Female age 34
Re: Lymphedema [Re: JujiLow] #198678
07-10-2019 09:53 AM
07-10-2019 09:53 AM
Joined: Oct 2012
Posts: 1,089
Toronto, Canada
G
gmcraft Offline

Assistant Admin
gmcraft  Offline

Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,089
Toronto, Canada
Jujilow,

It’s understandable that you are upset by the swelling in your neck. I have read multiple times that patients who wish to do the neck massage to help drain the lymphatic fluid build-up should check with their oncologist to be sure that they are free of cancer. There’s some fear that a stray cancer cell may follow the lymphatic fluid down into the body cavity and result in metastasis. For this reason, I urge you to talk to your doctors before you start massaging your neck.

The lymphatic build-up does get better over time.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Lymphedema [Re: gmcraft] #198692
07-12-2019 05:08 AM
07-12-2019 05:08 AM
Joined: Jun 2019
Posts: 7
UK 🇬🇧
J
JujiLow Offline
Member
JujiLow  Offline
Member
J

Joined: Jun 2019
Posts: 7
UK 🇬🇧
hi there,

thank you so much for replying to my post, I’m really grateful to know this now as the last thing I want to do is help any stray cells to develop any further. I really dont want to go through any of this again, especially the radiotherapy so I’m willing to try anything in my power to prevent it. I hate the feel and touch of the lymphodema, it’s so uncomfortable and restricts so much of my movement but fingers crossed in time I will get the correct help on this. I will speak to my doctors in my next check up.

thanks again, ((hugs))


SCC Stage 3,
RND,
RT, 6weeks - 30 sessions
Partial Glossectomy, 03/03/19
2/3s of my tongue removed and reconstructed using a skin graft from left thigh.
Xerostomia
Female age 34

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