Chemo apparently doesn’t cause oedema!

Hello Mr U 

I didn’t see the question of Chemo and Oedema yesterday, but this is one of my pet subjects Atm that I am also trying to get to the bottom of.

Mr BW, Aka ‘Jumbo legs’ has pitting oedemas in both lower legs. As far as I know from reading about the subject there can be quite a few reasons. Linked with PC
Docetaxel (chemo) /Rt damage to lymph nodes./steroid use / Hormone therapy ( Zoladex for one) can be a cause.

its all about holding on to water and problems with drainage. Damaged nodes don’t help either. 
Im sure there has to be many more reasons like heart problems and not pumping it out. But as far as chemo goes it is known as a cause. 

Of course I’m not medically qualified to say this, but happy to put a tenner on it!

L

I hate all this. My oncologist hiding behind half truths and lies, braving it out while I sit and cry inside with everything else that gone wrong with me.

i applaud your reply and stance in trying to get the bottom (or ankles) of the problem. Yes I’m really trying to be brave myself.

Keep you chin up and push for a change in the logic that chemo is a cause of your and my chubby legs.

I’m with you.

My legs are fat up to the knee and down to the toes. It’s a nightmare.

Good luck.

I agree with BW and so does CRUK.

https://www.cancerresearchuk.org/about-cancer/coping/physically/lymphoedema-and-cancer/about

My husband developed it in one leg firstly after his 33 rounds of whole pelvic radiotherapy and then again after his 6 rounds of docetaxel. He also developed upper abdominal fluid build up towards the end as a result of the cancer in the lymph nodes in that area. Initially he was given diuretics but the advice from the doctors was to raise the leg when he was sitting down but to make sure that he moved around every hour. GENTLE massage along with keeping the leg moisturised in order to prevent the skin splitting. My husband's osteopath was trained to do lymphatic drainage which helped - she usually started at the shoulders and then moved down the abdomen to the groin until finally gently massaging the legs. Compression stockings were also recommended. Watch your salt intake. Every time Peter saw the oncologist almost the first thing he did during his examination was to check his ankles for oedema and palpate his abdomen, plus it was always commentated on in the results of his MRI scans. One of the concerns with lymphoedema is the increased risk of a DVT particularly if it is in the leg so watch out for any reddening or hardened area and particularly shortage of breath which is straight to A&E.

Oedema can occur both during and after treatment as well as developing a long time afterwards. I thought of it in two ways. One could be that it was as a result of damage to the treated lymph nodes. The second was that it was showing that the body was working overtime to eliminate the cancer debris from the body at a greater rate than normal and, therefore, pooling at the lowest level until it could be eliminated.

The NHS have a useful link.

https://www.nhs.uk/conditions/lymphoedema/

Your GP might be able to refer you to a lymphoedema specialist.

I was listening to a recent snippet by Dr Mark Scholz on genetic markers for late stage advanced prostate cancer in relation to the development of small cell prostate cancer and the use of carboplatin, plus carboplatin was to be Peter's next treatment if the docetaxel he was on didn't work.

Keep fighting so that you can enjoy your time with your lovely wife.

Mr U

You are doing so well usually so upbeat but you are allowed to feel low sometimes as well. The edema / Oedemas is that an English USA spelling thing? Are horrible because they are a visual symptom as well and it makes you aware that’s something is off. It can be many things and it comes and goes with BW. His consultant doesn’t seem to be worried at all and sometimes I suspect that he ‘s only human and he can’t be an expert on everything. Our top contender is HT side effects, but it could be the steroids or the result of full pelvic RT for BW. You need your ECG to rule out any problems with your heart of course as that’s a main worry, but once that’s done side effects of treatment are something to look at. Too much salt can be a contender, the other day I caught BW shovelling down a tube of salty Pringles with a feeble excuse of its OK my legs are up! 

I am a great believer in trying to work with your body and looking at foods that support you. I’m bound to get reported for mentioning supplements as I have done before, so I always say ‘don’t take anything without running it by your consultant!” But we are a nation of bad eaters sometimes and often lack in things like Vitamin D/Iron/calcium one of the simplest things is vitamin C ( the great healer) bit of a controversial one with wrong thinking that it cures cancer from some corners, it can interfere with some cancer treatments so MUST check that one. But it is a vital vitamin for your body and we don’t retain or store it so we need to make sure we eat it daily, it supports things like T-cells and repair, these things are vital to running a healthy body. Something that’s worth looking at as a side line to treatments when at a loss. 
So brings me to my banana theory  I know it sounds bonkers, but they do seem make a difference to BWs legs, because the potassium from them helps drain the sodium and water. Eat a banana a day, see if that helps in anyway with the legs what harm can it do, nuts and seeds are full of magnesium, this helps with potassium absorption too. Make sure those legs are right up and draining too.
You really are such a kind and caring man and I really like the support you give others on this forum, today is your day, look into alternatives like massage and drainage and hot foot it down to the banana shop and try out my theory, you can always tell me how mental my thinking is if it doesn’t help. 
Xx 

I can’t thank you enough for both the reply and the kindness within it. You BW are partly the reason I choose to help others, you are a very caring and knowledgeable soul. Thank you.

Sometimes there’s nothing left but being able to be helpful to someone in need of encouragement and support, that’s the days when I feel myself the most. Just to help is all the nourishment I need on a rainy day.

Bananas. Interesting. I’m a great advocate for the body telling you (on occasions) what you should be eating by way of a craving. In the last few days I’ve been craving bananas, would you believe. My appetite is not what it used to be so I like the smaller yellow beauties. I will carry on with those with pleasure. As for the C, I will add more as I go.

Take care, and good luck

PS. I’m now wearing compression stocking for aeroplane use, and my legs are feeling the benefit immensely. So I’m on the right track.

Thanks ️

Excellent !  I hope your “darling” is liking the new stocking look, nothing like a man in tights to get the pulse racing. 
x

Mr U said:

PS. I’m now wearing compression stocking for aeroplane use, and my legs are feeling the benefit immensely. So I’m on the right track.

I bought some compression stockings a few years back for a trip to The States - a friend of mine had a bad DVT after a similar trip !  I wear them all the time now, not so much for medical reasons, but because they are very comfortable, wear well and don't "fall down" like normal socks do after a while.

Hi Mr U so sorry you are having a low time. Think the others have given you enough ammunition about the oedema.  Interesting how the experts disagree.  Maybe a perfectly healthy person undergoing chemo wouldn’t get oedema and therefore technically it doesn’t ‘cause it’, but in your case it has either caused it or is a catalyst for it to happen.  Either way glad you are feeling slightly more positive.

I woke up on Tuesday and felt like rubbish after breakfast, so I went back to bed and had a fever (38.8) all day, not eating or wanting to drink.  During that time, my mind convinced me that this was the start of the end.  How many other people have we told to stay calm and don’t worry!  On Wednesday the fever subsided and today I am back to normal.  I know we are all at different stages in this journey but we do have to focus on the highs to keep us going and just survive the lows.

You have helped so many others during their low points, I am sure I speak on behalf of the group, we all hope you feel better soon.

Hello BW,

I do like your banana theory & must admit to eating one a day for the last umpteen years as a mid morning healthy snack rather than reaching for chocolate biscuits (now why can't they be healthy?).

This thought pattern then reminded me of an article I read some time ago as to how the make up of a banana differs as it ripens from green to yellow to over ripe with brown spots.  Memory tells me that on the green side was perhaps better as there was less sugar & more fibre but the firmer texture puts many off.  My preference is for yellow but on the firmer side before it gets too soft.  Each to their own taste.

Best Wishes

Brian 

Hi Mr U ,

It is really uncomfortable when you can't explain something to your own satisfaction.

Way back when I was first diagnosed I went through all the tests, and got the results and the staging. These all pointed to a diagnosis of "locally advanced prostate cancer". I saw this as being "better".

I became very wrapped up in this, and it came as a huge shock to me when my hospital refused to use that kind of diagnostic phrase. It was upsetting that no one was even listening to what I was saying.

There was quite a long period of me suffering from considerable angst because I didn't understand why they just couldn't agree with me.

At some point I came to realise that, whatever they wanted to call it, they were treating it that way and, after a long discussion with my wife I decided to leave it alone - which was much harder than I thought.

Having succeeded at that, there were a few more months of treatment, and then I had radiotherapy early this year. At that time I also developed an increasing problem with back pain. The back pain wasn't caused by the cancer, but by a pre-existing problem. I saw an article that said that, whilst R/T was unlikely to cause back problems, it could aggravate the inflammation that tends to cause the pain.

I immediately became wedded to this idea. The radiographers and my chiropractor agreed, and the GP's and the Oncologist poo-pooed it.  Never did find out who might have been right, but I am deeply suspicious that the pain receded in about the time I had been warned to expect that the side-effects would fade.

These have been the mental challenges that I found difficult to deal with at the time.

Looking at your story, it seems to me that your medical advisers have taken very little notice of how their words have affected your mental health. In my personal view, someone needs a "thick ear", but my wife tells me that this is frowned on. It would wake a view people up though.

My suspicion is that your oedema is directly related to the chemotherapy, but aside from what I have read as a result of your post I have no knowledge.

I guess, in the end, the underlying question is  "How badly will this affect your other problems?" Again, it could be more drugs, it might be physio, it might be nothing, but it needs to be explained and, above all treated in a way you can understand. 

You have my deepest sympathies, and if I could think of anything that would encourage you the way you encourage us, I would say it.