Lymphedema after bladder removal - need ideas for more effective removal of fluid

[2198224]

I'm new here and interested in learning more about lymphedema therapy. Had bladder cancer, so a radical cystectomy early November 2017 and 28 lymphnodes removed from abdomen. Both legs are getting large and heavy with fluid as is pubic area and abdomen. A certified lymphedema therapist is working with me twice a week, but gentle massaging to move the fluid up to the thorax for elimination just doesn't seem to be working. What are others with lower body lymphedema doing that works? Are there any ideas for prescriptive or nutritional aids? Do others wear regular support hose? Or is wrapping the answer? I appreciate any thoughts. Thanks in advance.

[Lynora]

Are you in the US?

IPC may be an option (intermittent pneumatic compression), which you can do your self once, or even twice, a day - your therapist may have recommendations about products, or you could contact the National Lymphedema Network (if you are in the US) and seek advice. Your MLD therapist should teach you self ly'hatic drainage, which is important to do whilst you are using any IPC device.

Compression garments are useful - you would require waist high, like pantyhose - Jobst may be the better product, but require careful measurement to ensure a comfortable fit. Wrapping is useful for overnight. Either self bandaging, with reusable bandages (cotton short stretch, which can be washed) or a self applying wrap such as ReadiWrap, or ACS (Juzo).

Nutritional aid? Avoid processed food - especially sugar. Fresh fruit/veg - good protein from lean meat and fish. Plenty of water.

[2198224 in reply to Lynora]

Dear Lynora, Thank you. I'm very grateful for your response. I'm in Butte, Montana, USA, a town of 33,000 where few have urostomies, let alone 75 y/o women with lymphedema. I had not heard of the the pneumatic device and will be looking into it, both through the National Lymphedema Network you mentioned and through my certified lymphedema therapist. She is presently looking for compression pantyhose that might suit my purpose, but that means nothing that cuts into the top of the legs. She has not previously dealt with a lymphedema patient with a stoma, so some of the manual lymphedema drainage techniques she is teaching me have to modify around it. She uses kinsiotape and we're not sure yet if it is helping. I am doing the massage in the order she teaches me. I also found a MLD video at the MD Anderson Cancer Center (Houston where my surgery was done) site that includes more ways to try to drain the fluid. One problem is that I'm cross-hatched with a "bikini" cut horizontal scar from ovarian cancer 40 years ago, and the fluid in my pubic area has little chance to move on. If I can get it moving out of the legs and abdomen, that may be good enough. I'm even elevating my butt at night! I'm also doing the other things you suggested, including water/nutritional.

Sorry for the delay in replying. Tonight I went to the ER with an infection that broke open on the main vertical cystectomy scar. So I'm now on Minicyclin for skin infection. Krikey! Lymphedema does complicate things, but I am thankful I've become aware of need to get after infections quickly. And I'm thankful for people like you! ~mk

[CCT67]

Ditto Lynora’s advice. I have bilateral leg, truncal, and arm LE. Wearing compression therapy ie made-to-measure flat knit compression garments is essential for me all day as is wearing night time compression garments and wraps. Most importantly I do loads of lymphatic abdominal breathing throughout the day and I have a pneumatic compression pump, Flexitouch (made by Tactile Medical) that I use AM and PM. Before I got my pump I did SLD 3-4 times per day to drain my trunc and legs. Meticulous skin care is important to minimise cellulitis infection risk. No shaving of legs and groin with anything but an electric razor tl reduce chances of cuts/knicks. Always apply tea tree oil or topical antibiotic to scratches/cuts and monitor closely for infection (red, hot skin). Attention to food/drink is also important. There are no proven supplements or drugs for LE but nutrition hugely impacts on my lymphatics ie very unpleasant side effects from certain foods. My body can no longer tolerate alcohol, wheat, dairy,yeast, sodium bicarbonate, baking powder, hot spices, artificial flavourings etc. Exercise is important- swift waking - always with compression never go without it when exercising especially with leg/groin/truncal LE. Swimming can also be good as water provides natural compression. Eevation of my legs as often as possible is essential - gravity is the foe of lower extremity LE. Drink LOTS of pure water I also drink herbal tea on cold winter days, mainly turmeric ginger tea as it’s anti-inflammatory. There are currently clincal trials in the US and Australia of a possible drug intervention (called Ubenimex) but it’s early on in the research process. Fingers crossed, so far it looks promising.

Don’t stop your regular MLD as it’s important. I have 1-2 weekly MLD with a Foeldi trained therapist which is my favourite day of week as I always feel relief, especially in summer when the humidity and heat exacerbate LE symptoms for all lymphies. There are different approaches to MLD and I shopped around to find the therapeutic approach that my body responds best to. For me Vodder and Foeldi MLD has the best effect/drainage of my lymphatics. It’s worth trying another MLD therapist (CLT if you are the US) if you aren’t satisfied with your current one. In saying that, MLD does not make Lymphoedema go away, it helps manage symptoms and to drain the body’s tissues of lymph which helps to slow disease progression. For readers in the U.K. the best site to source a properly qualified therapist is MLDUK.org.uk

Good info and support resources are NLN as Lynora mentioned, as well as Lymphoedema Education & Research Network/LE&RN. It has Loads of excellent info and links to Lymphie blogs as well as web symposiums. If you’re on Facebook an excellent support group is Lymphie Strong Inspiration Group. It’s a closed group (easy to request membership) but very well administered and hugely supportive practically and emotionally. In the UK we have our national charity LSN/Lymphoedema Support Network so you check out that website too. Lots to read and digest especially as you are recently diagnosed

[2198224 in reply to CCT67]

Hi CCT67. Thank you for your very helpful response. I began writing back, but lost it into the ether and will begin again tomorrow. The references you supplied will certainly be good. I am on Facebook and will look for the Lymphie Strong Inspiration Group.

When you mention flat knit compression garments, what does that mean? Prolly more toward homemade than commercial garments? Am not familiar with the SLD term either... Will try to learn about Flexitouch and get an electric razor. Do you use tea tree oil full strength? I find it very strong. Can you not eat oat bran, yogurt? Will look into Foeldi and Vodder. I will try to find out more about Ubenimex. I monitor the medical/pharma STATnews emails for some investor/social justice-oriented Catholic nuns, and I will likely find something in their archives.

Thank you for being so specific about things like walking; i.e., with compression.

I will continue to pour over your notes. You have been generous to share your experience with me. I'm very grateful.

~mk

[Chocolate-e-clare]

Hi MK - I'm in Austin (therapist from Australia - CLT - now working in Texas as a massage therapist). For the swelling in your legs, ideally you would (probably) go through a course of CDT (bandaging or wrapping) to get the fluid levels reduced - but this can have an impact on your mobility (legs wrapped in bandages can make life difficult - bulky). There are systems like Circaid wraps (velcro) which can be used for reduction. Once your swelling is reduced, you can be measured for custom made garments (unless you fit the range for off-the-shelf hose). The best fabric for lymphedema is flat-knit (it's knitted on a machine, and has a seam up the back). This fabric is stiffer than circular knit (like typical hose fabric) and can be difficult to get on - your therapist will be considering what options will be best for you, given your strength/mobility/situation etc. Having a support person to help you get your garments on would be a plus. Lynora mentioned Jobst - they make custom flat-knit - and can incorporate a hole for your stoma in the garment. For the pubic swelling at the moment, has your therapist mentioned swell spots (Solaris) or chip bag? SLD stands for Self Lymphatic Drainage (like MLD - which you do for yourself). Send in anymore questions. Finding the right garments can take a little time (as you have probably worked out). And your situation is not a simple one. As you know! I'm glad that you have a therapist working with you, trying to find some good solutions. Wishing you well - hope the infection goes ASAP. For more support, there is another great group on Inspire (for NLN - National Lymphedema Network, in the USA). Clare.

[2198224 in reply to Chocolate-e-clare]

Hi Clare, and thank you very much for the wealth of information you sent. I surely don't look forward to bulky wraps at a time when I'm also doing physical therapy to strengthen core and balance. But I also don't want this to get worse. I looked at the Juxta wraps and will bring your notes to my therapist. I imagine I could get away with just the knee and upper wraps and use my knee high True Form support hose for the lower leg. We'll see what she says. She did show me some Jobst compression stockings, and it's great to know that they can put in a hole to accommodate the stoma! Will look into chip bag. Did find the Solaris Swell Spots and copied info on a few products to show my therapist Wednesday. Which is now. And I'd best get to bed. I'm grateful for all your help and will continue to post my questions.

Another interesting thing: I see there is a clinical trial for Ubemax (sp?) that should be complete by June this year. It would be lovely if one could take a pill to reduce lymphedema.

Take care. ~mk

[skybluepink]

Until I got right diagnosis for lung /heart problems when went to fit me with Reveal Device[ implanted holder monitor] not revealing only PAH [ microvascular?} I then got the correct diuretics but have to walk around with a bucket as the amount I lose [whole body] is amazing.

[2198224 in reply to skybluepink]

Hi skybluepink. Thanks for replying to me. I'm not surprised at huge drainage from the body, as I had an incident ten days after the cystectomy that was an incredible amount of "bodily fluids" that came rushing out. Sent me to ER. None of the medical folks would give me a diagnosis, so I researched it a lot and then asked them if that huge drainage was called a lymphocele? Yes, that was it. So it was lymph fluid that built up after the wound drain was taken out of my abdomen. Recently, I have wanted to use diuretics, but was told by a certified lymphodema thrapist that I should not use diuretics. Reason is that the protein in the lymph fluid tends to grab on more fiercely when just water is released. Better to get all the fluid components out through manual lymph drainage and compression. I sure hope you are able to become more mobile that it seems right now. Good luck to you. ~mk