Lymphoedema with MBC

[Ursula_I]

Hello everyone

I hope you are having a good day, and enjoying the sparkly snow if in the UK!

Some of you may recall I am recently diagnosed with extensive MBC. I am currently halfway through my chemo - I have had three cycles of Docetaxel (plus Phesgo) with three to go. I've had a lot of horrible side-effects but am persevering. I had a CT scan on Saturday to see what the tumours are doing, I see the oncologist tomorrow and I've got my next chemo (and Phesgo and Zoleda) on Friday.

Five years ago I had a large tumour removed from my right breast alongside axillary clearance as there were cancer cells in the lymph nodes. Following that I had treatment for lymphoedema in my right arm (massage) which went away, thankfully.

ANYWAY, I now have developed lymphoedema in both my lower legs. My feet and ankles are stiff and swollen, my calves are swollen snd behind my knees is really itchy and tight.

I'm so upset as this is yet another thing to deal with. Has anyone had any experience of this? Is it caused by the cancer or could it be a side effect of the chemo? What should I do about it?

Thank you in advance

Lucy

[Hazelgreen]

Hello Lucy,

You are certainly going through a miserable time! I have no relevant experience to relate, but I did check the Mayo Clinic online for the side effects of Docetaxol. The long list of common side effects included "joint pain, stiffness, or swelling". I very much hope that your tumours are responding to the chemo, and your side effects disappear when the treatment is over.

If I were you, my assumption would be that the lymphedema in your lower legs is a direct effect of your chemo treatment. This may especially be the case for those who take Phesgo as well. The online information for Phesgo also listed "swelling of the ankles/legs" as a possible side effect of concern.

I was interested to read that the lymphedema in your right arm went away with massage after your first bout with cancer. Mine did as well, but its return was the first sign of MBC which compelled me to ask my GP for an assessment. It (the lymphedema in my right arm) is still with me as I type. Is your right arm still good?

I also have extensive mets, but mine mostly seem to be slow-growing, and I am still on endocrine therapy. I am not looking forward to chemotherapy when the time comes, but we all have to do whatever might help us.

Sending warm wishes that your side effects go away sooner rather than later,

Hugs,

Cindy

[Ursula_I in reply to Hazelgreen]

Dear Cindy,

thank you so much for your reply and for doing that research for me. So kind!

According to the oncologist, the swelling is caused by my liver malfunction -- low albumin levels. My liver is now recovering as the chemo is having a good effect on my soft tissue tumours. Hooray!! (however, unfortunately, the mets in my bones have not so far succumbed to the chemo. Oh well. )

Anyway I've been given some advice about exercise, keeping my legs elevated, and eating lots of protein. Let's see!

My arm is still okay, thank you

I wish you all the very best for your own treatment, especially the chemo when the time comes. Gentle hug!

Lucy.

[mariootsi]

I would go back for massage on legs.

[Ursula_I in reply to mariootsi]

Thank you, I think I will, certainly if it gets worse. So far I haven't been referred to the lymphoedema clinic.

In fact the oncologist said it's swelling caused by liver malfunction so strictly speaking, not lymphoedema. It spread to my thighs a few days ago!!! But keeping my legs elevated, and doing more exercise, seems to be helping.

I will investigate massage though if it doesnt go away.

I wish you all the best and thank you for your kind advice.

Lucy

[mariootsi in reply to Ursula_I]

I wish you well Lucy. Hopefully you can get some relief.

[Hazelgreen in reply to Ursula_I]

Given that I too have liver mets, I was interested in your oncologist's diagnosis of hypoalbuminemia. I thought you might find this reply from Medscape (online, with free registration, but perhaps more medical details than you'd care to have to process...)

The online question was, "How does hypoalbuminemia cause edema?"

The answer was as follows: "Albumin comprises 75-80% of normal plasma colloid oncotic pressure and 50% of protein content. When plasma proteins, especially albumin, no longer sustain sufficient colloid osmotic pressure to counterbalance hydrostatic pressure, edema develops."

It seems that your oncologist's advice about eating lots of protein and controlling the swelling is good advice. Even if the meds (which are hard on the liver) haven't directly caused the swelling, I'm hoping that the swelling will go away as you gain control over the liver mets, and your albumin levels rise.

Thanks for sharing your situation here as I've learned from my interest in it. Your replies to all our comments are much appreciated. This is indeed a useful forum for knowledge as well as support.

Do keep us posted as to your progress.

Warmest wishes,

Cindy

[Ursula_I in reply to Hazelgreen]

Thanks Cindy! And thanks for supplying the medical name for the condition... hypoalbuminemia, indeed! Sounds important!! 😅

I will have to read that Medscape explanation several more times, I think, to understand the process a bit better. Interesting though - thank you.

If truth be told 'eating more protein' is easier said than done, given my recent chemo has made everything taste horrible. I think I'll have to get some of those protein shots to drink.

I agree this is a brilliant forum, it has been really heartening and helpful for me. I am embracing little moments of joy. Yesterday was a beautiful sunny day and I rode the Golden Gallopers (fairground carousel) in my town's Victorian Christmas Market. By myself! It was magical! Made me feel like a child again. I really giggled.

[FloridaNYgirl]

Hi Lucy, Sorry to hear you are going through this, I know lymphedema can be quite painful.

I am a retired massage therapist. Over the years I have treated many people with cancer. People with lymphedema respond well to massage. In your case, with it being so severe, I would seek out a specialist in manual lymphatic drainage. It is a very specialized technique, and quite effective. In the mean time, discuss with your doctor about proper exercise for you.

Lymph is transported through the lymph system with contractions of muscles. Unlike blood that is forced through veins by pressure from the heart. So even though you probably feel better sitting, upright and moving is better for drainage.

I too had my axillary lymph nodes removed. After surgery I made sure I used my arm. Never overused, but did what I would normally do. I never had lymphedema. I believe movement kept the lymph flowing.

Also avoid putting heat or ice on the area, again that works for muscles and swelling, not fir lymph accumulation.

First and foremost, call your Doctor.

I wish you all the best,

Ellen

[Ursula_I in reply to FloridaNYgirl]

Thank you so much Ellen, all that is really helpful, especially your professional experience. Really kind of you to write such a detailed reply.

The oncologist reckons the swelling is caused by low albumin levels rather than anything related to the lymph system. Do you think massage would still help? He's recommended exercise, more protein, and keeping legs elevated. I think I'll get some compression stockings, too. What do you think?

Thanks again and all the very best to you.

Lucy

[Hidden]

Hi there!!!! I so appreciate what you are going through!!! I do cupping therapy..I was very skeptical at first but it helps me immensely!!!

[Ursula_I in reply to Hidden]

Thank you, I will look into it!

[Hidden]

Hi, I’ve recently been diagnosed with Lymphedema from breast cancer I had in 2013. Apparently it can take up to 10 years to appear. So I am told by the Lymphedema Consultant. They do not recommend massage as this pushes the fluid around the Lymph nodes and can cause more problems. I have had Physiotherapy which is basically excersise good and wear a glove and arm sleeve. I really hope you can solve the problem with help. You have been through it before so you know what to expect. We are all told different things from our health professionals. Rightly our wrongly this is what I was informed of.

Best wishes

[Ursula_I in reply to Hidden]

Thank you so much. It is difficult as there are so many potential causes of the swelling, and as you say, conflicting advice.

Interesting to hear massage was not recommended to you!

I'm trying to walk more, keep my legs elevated, and I'm going to get some compression stockings. See if that helps.

Thank you for your kind advice and all the very best to you with your own cancer.

Lucy