My best friend just saw the lymphedema specialist today. He was told that he would need a compression suit for the rest of his life. Not only his 2 legs and 1 arm are swollen with fibrous tissue on the back of his legs, his scrotum enlarged in the last 2 weeks. He was okay till the 6th docataxel treatment.
Total weeks of lymphedema is 6.
Anyone else had lymphedema due to chemotherapy? What did you do to treat it? Will it go away on its own.
Also, on another forum someone suggested compression boxer for now. Any suggestion to the type. There are so many on amazon. Can anyone provide a link?
No indication at all till after the 6th chemo . He and I can’t believe the lymphedema specialist said there is no cure and he will need a compression suit everyday in his life.
Was there prior history with lymph node removal ? In my case I had 19 lymph nodes removed during prostate surgery which eventually led to lymphedema firstly in my lower right leg. During docetaxel treatment my whole leg and scrotal area blew up and unfortunately they have never returned to their respective previous size. That was 2 years ago and I wear compression garments ccl3 on both legs now for most of the day. The problem with docetaxel is that it does have the side effect of fluid retention, throw in prednisone and that can also cause fluid retention.
Your friend's lymph system has been overloaded and in what they term "Dermal Backflow ". The little one way valves in the lymph vessels have been unable to cope so they have ceased, stopped functioning and that unfortunately is permanent. The musculoskeletal system still provides a pump for the lymph fluids which is why muscle developing exercise is very important for this condition.
These are a few things your friend should be doing:
Organise to see a physio/OT as soon as possible and they should be able to organise some sort of treatment plan including compression garments and helping to move the fibrosis
Ask about hiring a compression pump with appropriate attachments after receiving instructions from the physio, this is far more effective and economical than massage.
Rest with leg elevated when he can and avoid the heat
Exercise and diet is important so is keeping up your fluids . Skin health is very important - Avoid at all cost skin infections, cuts, wounds etc and no needles to affected limbs. The consequence could be cellulitis and that is something your friend does not ever want to happen believe me.
Avoid tight clothing
My leg has decreased in size from 2 years ago and continues to reduce but I'm pretty diligent on making this happen, because it's pretty hard work.
Hopefully your friend's limbs may return to normal but I don't think that will happen by itself. Action has to happen immediately or else he is risking any hope of normality and that unfortunately is the hard truth.
The OT at my local hospital gets them in for me at present, previously I've had custom made (made to measure) garments which I've paid over $200 (aud) for one leg.
The garments are only good for 6 months and for my needs I require nothing less than class 3 (ccl3) compression which are not usually available "over the counter". I should really be wearing custom made i.e made to measure ccl4 compression garments but it would send me broke and also my thinking is that if I can get my leg size down than these custom made garments become redundant very quickly.
I had breast cancer and had chemo and suddenly ended up with lymphedemia in my arm also. My thyroid also got messed up and when I straightened out my thyroid the lymphedemia disappeared. Maybe check out your thyroid numbers. That regulates your body functions.
I developed lymphedema in my right leg following on lymph node surgery.
I was prescribed a compression tube for my leg which I use most every day. The company providing the device was Tactile Medical. They also supply compression garments that cover the body.
Mine was covered by Medicare and I believe the the other one is as well but it was a long drawn out process to obtain Medicare approval
Has he been checked for DVT (blood clots)? My husband had lymphedema in his right leg for 6 months, which got worse during chemo. When his scrotum and other leg started blowing up, the docs discovered 2 blood clots! He was on a heparin drip in the hospital for 36 hours and lost 10 pounds(!) of fluid over that weekend.
He’s on Lovenox blood thinner shots twice a day now for the foreseeable future. I wrapped his legs every morning for 6 weeks until they stopped shrinking. He now has a prescription compression stocking (thigh high) for his right leg that he wears about 10 hours a day. Almost no swelling at all anywhere now. It can be managed! And check for clots if he hasn’t already.
My Eric was diagnosed stage 4 with mets in lymph nodes and bones.
He did 4 rounds of chemo, and then started Lupron shots, Zytiga and prednisone.
2 months after chemo, his legs and feet ballooned. We tried diuretics to no avail.
We tried compression socks - no good and very painful. Six months later, he went to lymphedema specialist. Long story short, he ended up getting a Flexitouch pump and suit from Tactile Medical. It has worked marvelously!!!! Highly recommend. He does one hour a day and has been using for about 9 months. The lymph doc says he still has to wear the socks but he's finally found a type / size of those that are bearable (took about 8 different types/sizes).
Hope your friend finds some relief.
I wasn't fully aware of this nasty side effect of chemo. I hope the suggestions in this thread help.
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