I have had lymphoedema since Dec 08 dx at end of chemo but before rads. It has got steadily worse and been measured several times since then. Lastly in June this year. The measurements then showed that the volume of my left good arm had gone down quite a bit thus making my bad arm 50% larger. My arms were previously measured in Nov 09 when the left good arm was larger and the right bad arm was smaller in some places than it is now. The difference then was 20%. I am now being recommended for MLD with bandaging which I am definitely not looking forward to. Apparently it is not urgent and can wait until November. Has anyone else had these discrepancies with measurements even on the good arm?
I am sorry that you are having problems.
I am having the same problem. My good arm is smaller than it was before treatment but I suspect it has something to do with all the injections, infusions and blood taking I have had in the past 20 months. I have just finished a year on Herceptin and am just thankful that my veins were okay.
My bad arm is bigger than it was some months ago and I cannot wear a sleeve for long as the arm starts going red and I am afraid of the skin breaking down. It took me ages and loads of moaning before I got to see someone trained in Lymphoedema. I don’t think that there is enough done for those of us suffering and I have always believed in proactive rather than reactive treatment. I think that I too will have to get something done soon. Apart from my arm looking awful lots of my clothes don’t fit.
I am surprised that you are having to wait so long for the treatment but if I were you I would give it a go. You can always stop if you are not happy.
Do PM me if you want a good moan and let me know how you get on.
I definitely agree that there is not enough done for those 30% of us with lymphoedema. My impression is that the bcns are poorly trained to deal with it and just give out general advice on how to avoid it - all of which I did incidentally after the op but to no avail - indeed my experience is that the advice is abysmal. If you research on the internet you will find loads more advice particularly an American site which I will pm to you. There they seem to be much more proactive particularly about giving sufferers MLD. Again no NHS nurses are trained to give this and it is not available on the NHS.
My impression is also that my left good arm came down after I finished the Herceptin. Not surprising it suffered when you think about the quantity of infusions we had. I did have to have a PICC line near the end and that involved lots of probing about in the arm.
It is largely my choice to wait. Theres is no way I fancy bandaging in the summer what with the heat and not wanting to cover up. I was told there was no urgency but no help given in the meantime. I was told I needed a made to measure sleeve. Again my arm measurements do not match those in all the appropriate places of the standard sleeves. But these are routinely dished out by the NHS as to get a made to measure is more expensive.
Part of the advice in the book is to regularly measure your own arm at all the strategic points ie the hand, wrist, elbow and upper arm. They suggest once a week. That way you can monitor what you doing and if it is making your arm worse. I feel this has got to be good rather than every six months. A lot can happen in that time. Again when I was first dx I was definitely discouraged by nurse from measuring. Incidentally these measurements are the ones on which they decide what size sleeve to order for you. The way I see it a lot of it is down to the patient. Once you are onto the bandaging, MLD etc you have to pay for that yourself anyway it seems.
I fear with all the cuts things can only get worse for sufferers as it is condition that needs regular management.
I have also bought a very good book on Amazon with loads more advice in than is ever given by NHS nurses. I will email details.
I do consider myself more than lucky in that I have a fantastic lymphoedema nurse. Bit of a nightmare getting the referal in the first place as just wasn’t taken seriously by other so called health care professionals.
Starfish, I do get MLD on the nhs,I think maybe I’m just very fortunate ,(I do know that the nurse bandages people too) had a trip to USA couple of months ago and my nurse made sure I had 3 sessions before I went,gave me loads of advice ,had a increased compression sleeve for the flight and had more MLD when I got back and now have it roughly once a month to keep on top of it. It has certainly improved a huge amount since I was diagnosed and am more than happy with the help and support that I get,this however, does seem to be the exception to the rule and I just don’t understand that we have a fantastic service here but if I’d listened to my BCN and gp I would still be waiting at home with an ever increasing and painful arm,breast and trunk !
Good luck with all your continuing treatment.Fingers crossed that things improve for all lymphoedema sufferers especially in the level of service and advice that we get.
Does anyone know if doing knitting is bad for Lymphoedema or makes it worse? I finished all my Chemo, MX and Radio treatment in July and am just getting my brain in gear. I picked up my knitting after months of having no concentration and am really enjoying it but my arm seems a bit worse.I don’t actually use that arm (Left) when knitting only the hand moves. Has anyone else had any experience of this?
Hope everyone is getting on ok xx
hi lynberi i was only told last week i had lymphoedema, iwas told to clench hand move arm up and down as exercise .idont know anymore but i too love knitting and waiting to hear your replies. could you give me any advice on good creams i am using e45 miosture milk it is good but interested to hear about comments on other creams
I asked about knitting as I thought it would be good exercise but was told to do a couple of rows then rest hand/arm as I hadn’t knitted for years. Advice seems to be small doses of everything and build up to longer sessions. My lymphodema arm ached this summer if I swam too much so I tried to switch strokes or just use my legs when sea swimmimng on holiday. I heard about a potter who had had a mx and she was told she could still throw pots as her arm muscles were used to the lovement.
I’ve been lucky as my BC is also a lympho specialist and I was referred to see a therapist at the marsden for further advice. When I was 1st diagnosed I was very cautious as so many things were warned against. Now i just try stuff cautiously and if it makes my arm ache I stop!
As someone whose arm has got larger despite doing everything to avoid it in the first place I too love knitting. Maybe it did contribute to it getting larger. who knows. But i certainly found it very therapeutic when I was having all the treatment and from that point of view it helped to keep me sane.
Since finishing treatment I have joined a craft group and we meet one afternoon a week. Since then I have tried things other than knitting. I do cross stitch and also crochet. Both of these I find very good for the lymphoedema. After a session of each my hand (which is hardly swollen in the first place) becomes flatter.
I have recently purchased a book from amazon entitled “Living Well with Lymphoedema”. I find this a mine of information. More than I have ever been given by any BCN or specialist. In particular there are some very in depth exercises which are having a very marked effect on my lymphoedema. Whilst doing the exercises I can actually feel the lymph flowing in my hand, arm and across my back. Deep breathing is also of great benefit at periodic intervals throughout the day. I guess this is why yoga is recommended. Aqua arobics is also strongly recommended. If anyone is interested please IM me and I will give details.
As to creams I could not get on with E45. I found it too thick and not easily absorbed. I now use Johnsons 24 hour cream which seems ok.
I am also fortunate in having a great lymphoedema nurse, so many health professionals are not aware of the implications of node removal or lymphoedema.
I think MLD is available on the NHS in my hospital- but I was taught self massage by the specialist nurse which made a lot of difference done daily early on, and now just do at times to keep on top of things. Mine is mild, but my hand used to be quite swollen even with sleeve and glove and has improved a lot.
I have found pilates brilliant for mine- some excersises I avoid and others the teacher adapts, but that and swimming were brilliant in getting mine down. On the creams front, I use aqueous to wash and double base after-they seem to suit my skin.
All the best everyone.
Hi missmessy and starfish, and everyone else,
Thanks so much for your answers regarding knitting. I have to say I have done far more than just a few rows at a time as I was so excited to have my brain back in gear and want to be bothered with it. It’s interesting what you said about crochet as I have just joined a club on-line to crochet a “Mystery Blanket” which starts in January and continues for 6 months.
I too use E45 on my arm, but I use the moisture lotion rather than the cream. It is quite light and soaks in well. Starfish your book on Lymphoedema sounds really good, I’ll look into that. I have a couple of booklets from the hospital but it sounds better.
So far I haven’t done much on the exercise front but I bought a Hula Hoop which is fun! I decided that the bit round my middle needed working on now I’m on Tamoxifen or “Tamoxifat” as my friend calls it! I usually go to a ballet class each week and love it but haven’t been since last summer. I am however planning on going back in September after the summer hols so I hope my arm behaves. It will look so elegant wearing a sleeve and glove with my leotard! (I don’t think). I suppose we can say it’s all a huge learning curve.
All the best to all of you xxx
I’m going to look on amazon for thatbook “living well with lymphodema”. I like to have as much info as possible about problems. It seems to make it easier for me to deal with them. My BC nurse tells me whatwever I want to know but |I have to know what to ask!
Hi littlemrs and starfish,
littlemrs, I too feel just like you as far as info is concerned so starfish I was wondering if you could tell us the name of the author of the book on Lymphoedema please. I too would like to get the book but when I went on Amazon I wasn’t sure which it was.
many thanks xx
I too have had numerous different measurements of both my good and bad arm going both up and down. Not sure what my percentage was but my BCN said it can change due to putting on or losing weight.
Hope that helps a bit xx