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

LSN

5,779 members2,669 posts

Lymphedema spreading to other parts of body

10 Replies

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.

Read more about...
10 Replies
cesces profile image
cesces

Maybe time for him to take a vacation from chemo.

It's unlikely this is his only treatment option.

On_porter profile image
On_porter

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!

CCT67 profile image
CCT67

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 profile image
Lynora in reply toCCT67

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 profile image
Lynora in reply to

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?

buddlia12 profile image
buddlia12

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 profile image
buddlia12 in reply to

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. :)

Not what you're looking for?

You may also like...

What is happening in my body?! Lymphedema spreading + Lympha Press

I have had lymphedema in my both legs. This week I got the Lympha Press machine in my home to try...
ulverin profile image

Pain in bottom of foot from Lymphedema

My son is of age 23 and has primary lymphedema in his right leg. He wears compression socks and...
hshank profile image

LVA Surgery with Dr. Wei Chen

I have had two LVA (Lymphedema) surgeries with Dr. Wei Chen at the University of Iowa the past year...

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

I'm new here and interested in learning more about lymphedema therapy. Had bladder cancer, so a...
2198224 profile image

Newbie here - but not to Lymphedema - how can you know if you have primary or secondary Lymphedema? (and LVA)

Hi all, I've just found this site. I have lymphedema in both feet/lower legs. Its not too bad,...
trisho41 profile image

Moderation team

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.