Dealing with Lymphedema w/o surgery?
Hi community. I'm posting since I haven't found a similar case yet.
I opted out on surgery and chemo (too late), and it's been a good run for 7 years. The LE came on slowly to rt arm, dr diagnosed. Now its in both feet, then the left breast just swelled in size. No real noticeable discoloration. Has anyone else had LE without first having surgery/chemo?
I imagine my lymphs are just overworked and of course blocked by MBC. And, it's time. Yesterday I realized I had developed a serious allergic reaction to Dettol, and stopped using it. I instantly felt better; maybe that was causing some extra work for the lymphs. Thank you.
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I think you answered your own question when you surmised that the MBC spread could be causing blockages in your lymphatic system given the varied places LE has appeared. Lymphatic massage should help some whatever the cause. Licensed therapists who will also teach you self massage are the first choice but if none are available there are many good videos on how to do this yourself. Make sure to check the credentials of the person producing the video when you choose. I hope you can get some relief.
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I agree with @maggie15 - you might want to try this gal on YouTube. I checked with my OT rehab therapist ( I have Lymphedema in my right arm) and she says she’s good. my skin Mets invaded the lymphatic system under my arm and it caused lymphedema to develop. Since radiation alleviated the skin Mets, my arm swelling is almost gone. I do the massage, and plan to wear a sleeve, but I can ow go hours without anything and no new swelling. The lymph massage helps a lot.
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@maggie15 @rlschaller Thank you both for the suggestions.
After writing, my entire system went into pain and swelling and extreme fatigue. Then after seeing the hives, I thought it's also an allergic reaction, and it was. About a month ago, I unilaterally stopped all medication and the use of dettol, and I waited to die as the testimonials here describe. But no... day 4 came and went, day 5, day 6... I started feeling really good, improved as each day passed. At day 10, I again laughed at the contradiction and with joy.
The doctor agrees that my system just went on strike against the intense hormonal medication, against the years and gallons of anti biotic cleansers (dettol and betadine) and yards of medical tape that produced an intense burning sensation all around my ribs. But my right arm continues to swell. Antihistamines have been offered, but my sensitivity, including an opthalmology issue, precludes their use.
So, I came back here to share the good news that hot and cold hydro therapy is truly effective. It alleviated the leg swelling, while the plastic bottle of frozen water I use to roll up my arm, in movements as described by the physical therapists you've recommended, is incredibly beneficial. The frozen water therapy just started today, and it really helps with the arm pain.
I'll report in again on the lymph issues.
The doctor says he's never seen cancer grow as slowly as mine. We're both wondering if Buddhist mind training together with the combination of western medicine and naturo/homeo pathy should be credited as a viable wholistic rx for breast cancer. We hope he might have more patients in the future who would choose this route (most people are already spiritually focused here), then he could present a more scientific finding that could be of benefit to everyone.
Wishing smooth journeys for all of us.
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A quick update: Curiously, the arm pain from swelling and the swelling itself is creating the worst impact on my quality of life: My arm doesn't work = bandaging and putting on clothes is really difficult, as are a lot of things now; the opioids don't seem to numb the pain; people who see the swollen arm get really disturbed.
Who would have thought a side effect of cancer could be worse than the cancer itself? ;)
A smooth journey to all.
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My husband had an arm like yours when severe LE developed post surgery for a complicated elbow break. His super swollen arm just hung there like a useless appendage; he had no feeling in it. He couldn't even attempt the prescribed physical therapy. The surgeon and PT had no ideal what to do so I came up with possible veterinary solutions since I have some background there and propsed pulsed magnetic therapy, ultrasound and photobiomodulation (red light therapy.) Ultrasound is used on humans in ortho but the doctor nixed it since it would heat the metal hardware. A fellow in the group had seen red light therapy used in neurological units when he did his residency so we tried that. It actually worked well and he was able to start the 18 month process of getting the use of his arm back. The plug in wraps are expensive but you might be able to borrow one or find someone who provides treatment with them. The animal ones work just like those for humans. The other therapies might work for you since you don't have metal in your arm. The cause of your LE is different but that shot in the dark worked for him.
Your statment about SEs being worse than the cancer itself is so true. My cancer was only stage 2 and radiation injured my lungs, thyroid, esophagus, trachea, nerves and now possibly liver (biopsy pending.) The brachial plexopathy is slowly advancing in my right arm. I'm hoping I never get to the stage where it doesn't work at all. Maybe a nerve block would help your pain. I had one done for intercostal nerves since breathing was excruciating; it still helped when it wore off six weeks later. I hope you can get some relief.
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@pemala im so sorry to read of your continued suffering. I hope you can find some relief as well. My swelling was not severe, and the Velcro wrap, called a Circaide Recovery banadage worked well for the two months I needed it. I now wear a compression sleeve , and since my insurance covered it, I also use a pneumatic pump which is a massager and that keeps the swelling in check. But I did not experience pain. In your pockets with support ❤️. Wishing you free of future suffering.
@maggie15 i love how ingenious you are. Love how you figured out that the red light therapy was an option to try , and so glad that worked for your DH. I’m so sorry to read of all the radiation complications you have endured. I cannot imagine the stamina it has taken to move forward. And yet, here you are. Loving and caring and sharing. ❤️
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The ideas of @maggie15 are really great. Thank you! Your support and @rlschaller's really makes a difference.
The swelling didn't reverse until a medical unit in India applied magnesium infused bandages to the appendages.
To address final stages quality of life, a different doctor is suggesting a dose of chemo pills, which I've been avoiding due to the side effects.
I'm so weak now, I can't imagine feeling better with chemotherapy. Comments?
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@pemala, I have never had chemo but goldie0827 who is no longer with us used chemo and procedures like kidney stents to keep her digestive tract from being blocked by cancer. Maybe keeping bodily systems functioning is the QOL the doctor is referring to. Goldie managed to sell her house and move to be with family at the end. Strength and peace be with you.
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@pemala sending much love and light to surround you and fill you. I don’t know about chemo pills as QOL care, I’ve taken them specifically Xeloda as a cancer treatment to keep the cancer from growing, I wonder if that is what the doctor meant ? You might ask about quality end of life palliative care, that is pain mtg to make your body more comfortable. There are some good threads here on hospice and palliative care, in case that might be helpful for you to make choices. ❤️❤️
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