Lymphedema spreading to other parts of body: Hi, New... - LSN

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Lymphedema spreading to other parts of body

HPpurple
HPpurple

Hi,

New here. I am posting for my best friend who has Prostate Cancer Stage 4. He had his 6th chemo of docataxel and then had a very bad case of lymphedema on both his legs (calves and thighs) and one arm. At the back of his legs , one can feel hard fibrous tissue (?) running along the back of both thighs. In the last couple of days lymphedema has spread to his scrotum area. He is not able to urinate at times so he needs a catheter.

Does anyone know the remedy? Could it be caused by the chemo or something else? Is he in danger as it spreads to his scrotum area now?

He has tried massaging but it is not working.

10 Replies
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Maybe time for him to take a vacation from chemo.

It's unlikely this is his only treatment option.

I cant help at all on the link to chemo (maybe chemo causes bad lymphatics, as I never had lymphedema before chemo)... However, to help 'down there', I cant recommend compression enough. Compression on both legs, worn at all times (apart from night time) for sure and Under Armour or Skins type boxers are good for in between the legs. Eco shorts could also help and he should be able to be measured by lymphedema nurses for this. Is he already seeing a specialist for his lymphedema?

Taxels do increase oedema. Massage and compression will help. Find a lymphoedema therapist - stat!

Lymphatic drainage techniques/massage and compression as advised by a Lymphoedema therapist or LE specialist nurse.

Find a LE therapist for your friend on the site link below. You can search by locality/post code. Only therapists who have been vetted as fully and properly qualified are on it Some have a lot of experience working with cancer patients while others don’t so do inquire about that when deciding who to see. Also enquire if trained in fitting compression as some have lots of training while others less.

In the meantime bicycle style shorts offer some compression, use in combination with a Juzo genital lymph pad which are made for men and women with genital swelling. The pad really helps, it comes in over the counter sizes and they make bespoke sizing if needed. For info call Juzo UK +44 (0)1613 580 104

MLDUK.org.net

Lynora
Lynora
in reply to CCT67

mlduk.org.uk for therapists in the UK

Sadly lymphoedema in this instance is another complication if the treatment to deal with. The posts here offer sound advice, so talk to his treating team and ask if they can organise hands on therapy and comfortable, supportive, compression.

Thanks all. He saw the lymphedema specialist today. He is going to be seen 3 times per week to learn how to bandage. He is a veteran so will be able to get compression stuff with his health insurance. As far as underarm boxer, which one? There are so many on amazon.

What is a juzo genital lymph pad? I am asking for him.

Can someone sent any links of the items where he can buy it? We live in the USA

Lynora
Lynora
in reply to HPpurple

Use the Search option (magnifying glass symbol, top right) and put in something like USA or advice in US - there has been lots of links put up over the years, taking readers to support groups or products available on your side of The Pond.

However, the team teaching him how to self-bandage will also be able to advise about compression and padding.

You are a good friend, doing all the research. Let the clinical team offer their knowledge too. Is he being treated at a Veterans facility?

Hi HPurple. It's possible that the swelling in his arm is due to the chemotherapy if this is the arm used for the infusion. It should resolve in time . Has your friend had radiotherapy? or surgery? Lymphoedema in the legs and scrotum often occurs when prostate cancer treatment has required removal of lymph nodes and or radiotherapy, which will both impair/reduce normal lymph drainage for the legs and genital area and lower abdomen. Manual lymphatic massage...... gently stretching the skin towards another group of lymph nodes can ease this. Your friend would need to massage towards the axilla.... but not the one with arm swelling. He may benefit more from seeing an MLD therapist for this.

For scrotal swelling he would benefit from support such as: scrotal support/jock strap/ firm supportive underwear. Sometimes wearing close fitting supportive swim trunks/cycling shorts, can help to support and reduce swelling. A specialist lymphoedema therapist would be able to measure him for custom made support which would be more effective. ( though costly) If urination is affected, it's important that he seeks medical help. He may need an indwelling catheter.

He may also benefit from some compression for his legs or a combined garment such as footless tights which support legs and abdomen/genitals. Has he been referred to a lymphoedema service?

I hope things improve for him soon.

Has he finally was referred for lymphedema service two times per week. They do the bandage wrapping and also using a pump machine (?) We are hoping it is from the chemo and will sooner or later will go away. He is improving but very little. Chemo treatment ended December 5, 2019

buddlia12
buddlia12
in reply to HPpurple

I'm so pleased that your friend has found someone to help with his distressing symptoms. He is so fortunate to have such a caring friend as you. :)

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