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#199563 12-04-2019 07:54 AM
Joined: Oct 2012
Posts: 1,275
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gmcraft Offline OP
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Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 6
There’s been a bit of discussion about lymphatic drainage massages and I would just like to offer my cents.

I would suggest not to be in a hurry to start any kind of lymphatic massages until the patient has got an NED (no evidence of disease) from the medical team after all the treatments have been completed. Like we often say on this forum, everyone is different, so, check with your doctors before you start anything.

The lymphatic fluid build-up in the neck will slowly improve over time whether one does anything or not. It’s annoying, I know. There is, however, a possibility that if some cancer cells are still lurking In the body, moving lymphatic fluid around may cause the cancer cells to move to other parts of the body. It is also a kind of massage that one has to qualify for, this is true at least in the US.

My husband did some lymphatic massages after his radiation and chemo treatment, and not long after that, we got the news that the cancer had metastasized to his right lung. Of course, there may be a millions reasons why the metastasis happened, but I can never shake off the suspicion that maybe it was due to the massages. I may well be clutching at straws but it’s a genuine worry of mine when I hear others getting lymphatic massages. The scientific community, it seems still hasn’t been able to determine how effective lymphatic massages are. The data I have come across Is skimpy and is for breast cancer.

Below are threads from this forum from 2007 and 2015, please take a look at the discussions or do a quick search and read thru hundreds of posts about this topic..

Lympathic Massage Thread
Old Thread... Lymphatic Massage




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.
Joined: Oct 2019
Posts: 32
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Posts: 32
Hi there,

Adding onto this - I am seeing a physical therapist trained in head and neck lymphedema (following permission/consultation with my radiology and surgical teams) while undergoing radiation. While I cannot use compressions on my face at the moment, I am doing the massages. I've found it really useful to have the conversation about lymphedema early. I have still swollen up a .5 cm more from radiation (in addition to MANY centimeters from surgery), but the massages are helping and I already have a strategy in place for when radiation is over There is not alot we can control and there is so much that cancer has taken away. In my case, cancer also took my entire tongue, my hair, and my job. For me, having some marginal control over the appearance my face and neck makes me feel more comfortable.

That said, I did ask my radiology and surgical teams first. And I am working with a PT who is trained and experienced in head and neck lymphedema. And I check in with my radiology team about everything that my PT and I are doing. And I maybe a rather particular case because I had several lymph nodes removed and the surgical scarring from my neck is blocking fluid - i.e. this is definitely lymphedema, not regular swelling.

The takeaway is that you can tackle lymphedema during treatment but that it should be done in consultation with your team and you should only work with someone who is experienced with head and neck lymphedema. I've learned that finding someone with that experience is not a given. You will have to aggressively search.


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