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#193920 - 02/20/17 08:41 PM Lymphedema  
Joined: Nov 2009
Posts: 644
Alpaca Offline
"OCF Down Under, Kiwi"
Alpaca  Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
New Zealand
Hello. I haven't been on this wonderful site for a while because I've been mixing with oral cancer patients in my area. I know, however, that you have a huge pool of people and lots of acquired knowledge.

My question is about massage and other treatments for lymphedema. My own post-surgery and post-rad swelling went down quite fast but other patients who had similar but probably more radical treatments are suffering. What is the story about massage spreading cancer cells if we can't be sure they have all been eliminated? My own ENT mentioned this but then said, "You've had the treatment, so it will be okay."

I believe there are other treatments like taping and physical therapy.

Would love to hear your thoughts, experiences and knowledge about this.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
#193922 - 02/21/17 02:47 PM Re: Lymphedema [Re: Alpaca]  
Joined: Oct 2012
Posts: 807
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 807
Toronto, Canada
I believe the massage drains the lymphatic fluid from the neck down into the rest of the body. If the cancer cells have not been definitively eliminated from the head and neck area, then they have a chance of moving with the lymph fluid into other parts of the body, hence the warning. John tried it once; while it worked, the relief was only temporary. That was after he got an NED but his cancer had probably metastasized by that point.

It's a sticking point for me because it makes me feel bad about that ONE massage he gave himself.


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.
#193927 - 02/25/17 04:01 AM Re: Lymphedema [Re: Alpaca]  
Joined: Dec 2016
Posts: 40
EMTK3 Offline
Contributing Member (25+ posts)
EMTK3  Offline
Contributing Member (25+ posts)

Joined: Dec 2016
Posts: 40
New Jersey
I started having lymphedema about 2 to 3 months after the end of my treatments. I was told it was a chronic condition and my doctor wrote a script for therapy. The therapist taught me how to perform the massages myself. I can't imagine there would be any danger associated with it or else they wouldn't do it. The therapy is part of my cancer center and they treat a ton of cancer patients, mostly breast cancer but a lot of head and neck patients too.

If I slack off the massages for a day or two swelling gets pretty bad and the fluid starts to harden. I was told this could lead to complications. I am not a doctor but I would think that if you have active cancer cells in your body they are going to grow whether or not you move them around physically.

In any event you should bring it up with your doctor.


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
#193928 - 02/25/17 06:37 AM Re: Lymphedema [Re: Alpaca]  
Joined: Nov 2009
Posts: 644
Alpaca Offline
"OCF Down Under, Kiwi"
Alpaca  Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
New Zealand
Thank you very much for the replies. Sounds as if a person needs to check with the doctor but that serious lymphedema is a problem that needs to be dealt with.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.

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