Brief history, dx March 07, MX, 13 / 19 removed nodes affected. Local recurrence Oct 08, further node removal. Incurable dx Dec 08 with lymph only affected as of yet. 13 months of Tax / Gem. Just switched to Capacitibine and started cycle 1. Intense pain in should triggered change as cannot get control of it, caused by tumour pressing on nerves etc. On oxynorm, about to convert to tablet now have settled a dose that works.
Which brings me to having noticed a few weeks ago my arm felt odd (mx side) heavy and a little tight, wondered about it being lymphoedema. Last week showed noticeable swelling, so mentioned to team who said will send me for lymph draining massage (must chase that up).
My reason for posting was is there anything I can do myself to help stop it progressing, things to avoid, things that help etc. Any and all advice would be appreciated. It’s my left arm, and I am left handed so it’s a double whammy.
I have to say I feel like it’s yet another kick in the guts when I have enough to contend with in coping with this b******d disease, and along it sends another symptom to try to push me over the edge.
It sounds to me like lymphoedema but I’m no expert and only have it (fortunately) comparatively mildly in my left arm/shoulder/neck area. It was picked up quickly and I was given gentle massage and exercises plus a sleeve. The sooner it’s seen to the better to stop it getting worse but that’s one of the side effects of cancer that often isn’t classed as a major problem.
I’m right handed so it’s not as bad for me but you shouldn’t do things like lift anything heavy or even mildly heavy, watch computer work and keeping arm in same place for long periods of time and don’t over-use if poss (difficult for you)
Bahons2 is the expert on here for all things lymphoedema but think she’s on hols at mo. I would say deffo chase the referral for massage and being seen by a specialist nurse in the field - once you’re in the system, it’s fine !
I too developed Lymphoedema recently, mainly in my hand, although my forearm is also a little puffy too.
I was told by the BCN to do my post mx excercises & try to gently massage towards my shoulder to try to get the lymph nodes there to deal with the fluid, while I was waiting on an apt with the specialist.
I’m off this afternoon to see him. It’s my right hand & I’m right handed, so it’s a complete nightmare…I’m hoping he can work miracles!
I’ll let you know if he gives me any advice which may be of help while you’re waiting to be referred.
Hi all, sorry to hear that you have got this to contend with too Nikki. I’m right handed and got it in my right arm ,side and boob,and yup it is a total nightmare with all the do’s and don’ts,best advice is to go through some of the posts on the lymphoedema thread. My prob was getting a referal in the first place but now am in the system at least something is getting done with it,but lots more awareness about it and the problems connected with it are needed.I’m going to be attending a focus research group run by Macmillan cancer with regards this in the next couple of months. I have got plenty to say about my own experiences but if you want to give me your points of view I will be happy to pass them on too.
I’m still on holiday, but have intermittent access to a pc!
Sorry to hear you’ve probably got the big L to contend with on top of everything else. Still, it sounds as tho’ your medical people as reasonably on the ball as regards lymphoedema (not always the case).
Can I add deep breathing and also (if it’s not too painful) shoulder rolling to the advice? As well as avoiding hot baths and keeping the arm elevated wherever possible, with plenty of support for the elbow. Also sticking your hand in a pocket, etc is better than letting your arm hang at your side. If you usually wear a bra with narrow straps, swapping to one with wider ones (or going without whenever you can) might be helpful. Don’t wear any jewellery on that hand.
It’s not advisable to stop using your arm altogether, but heavy stuff and activities like ironing and hoovering are not a good idea.
Try to avoid sleeping on your ‘bad’ side and drink plenty of fluids - helps the lymph to drain.
And do chase up your MLD appt - sometimes the waiting lists can be long.
Sandra - how do we contact you with our points of view for the focus group? Would you like a pm?
Hope you are having a great hol Sara,yup a pm will be fine,am quite prepared to get on my high horse with this so will be good to unload about it all and hopefully our voices might just get heard.Will keep you posted,I do know there are forums in both Leeds and London and it’s not just breast cancer patients that will be represented.
Hi Liz, so sorry for not replying sooner, been manic.
I am hoping mine stays mild too, will see how things progress and how effective treatments are, I find it really hard to resist doing all the things I would normally do with that arm, but am trying!!!
Massage is booked tomorrow, fingers crossed it helps.
Hi H, sorry to hear you have it too, it seems pretty unfair doesn’t it, ah well. I hope your appointment went well and they have some solid treatments to aid you and relieve it as much as possible.
Same here re the hand things, left handed, left side for me!
It’s pretty unfair isn’t it, but then all of this is really. I wont have a problem getting access to treatment thankfully, as have private healthcare and they are really really good with everything I have been through.
I can’t really say anything about it all yet, it’s so early days but I admire you for taking up the cause to help others.
Holiday should mean avoiding all ‘home’ stuff!!! Hope you are having a lovely time though.
I think I am lucky with being private, they are really good at reacting to and helping with any issues that arrive. I have my first massage tomorrow to see if that helps first of all.
Thanks to you, and everyone for the advice on what to do to help, it’s so great to be able to find this stuff out from people who truly know like you guys. Am gutted no ironing or hoovering :))))))) *sigh* lol
Hi i had a right mx in dec 2006 and full axillary clearance 2 weeks later with 2 nodes pos. I wear a prosthesis. Is it possible to get lymphoedema in the other breast as it has increased several cup sizes. I have it mildly in my arm. Often have some symptoms of tightness. Any good tips especially when buying bras i never seem to find anaything comfy they all seem to cut in and cause lymhoedema to be worse.
Hi all, recognise quite a few names from the secondaries forum but I’m joining you here as well now.
My left arm over the past month has gradually been feeling tighter and tighter, have trouble lifting anything much on that side and now finding it quite hard changing gear in the car etc. It is also becoming quite painful, like a tingling/burning pain, really hard to describe, but it goes from my underarm to my fingers and up towards my neck, supposedly following the line of a nerve.
Have been to GP this morning as not due to see my onc for another 8 weeks and was hoping to be given something for nerve pain, but have just got a prescription for Zapain and told to get a referral via my bcn to the lymphoedema clinic. There isn’t much very noticeable swelling, just a bit on the underside of my arm, but this tingling/shooting/burning pain is driving me nuts! Anything else I should be doing?
any advise, helpful info,i dont know if Iam developing lymphodema, frozen shoulder and the dreaded one… could be bone mets. My shoulder has become very stiff and painful but the pain is also in the top of my arm ,just like a dull toothache.im off to docs tomorrow.
I too have exactly the symptoms you describe Shuffle, stiff and painful shoulder, arm often painful in various places and often particularly around the elbow on the inside.
I’ve been having physio for this problem which has been going on for some time, but it seems to be getting worse. The physio said its not swollen but to keep aware of it just in case of lymphoedema.
Good luck with your appt tomorrow, I’m interested to hear how you get on.
Hi, had X ray and results through very quickly, happy to say it was put down to frozen shoulder, so off for physio, but was warned it could take months…so relieved to hear it wasnt mets wil put up with anything
Hiya, if youre sure you dont have lymphodema,why not try my favourite pain relief, a hot wheat bag laid across the shoulder and the back of your neck,give brilliant temporary ease and won`t upset your stomach like pills. Love from Mags x
Just been diagnosed with Lymphoedema. Had MX and all lymph nodes removed 12 years ago and developed secondaries 4 years ago and been on taxotere and xeloda on and off since then. Developed blood clot in neck and put on heprin. They thought porta cath could be cause so that was removed as not on iv chemo just now. Have had swelling and pain in right arm which they thought was connected to clot. Just had another 3 days in hospital and told it is lymphoedema.
Feel quite devastated but don’t know too much about it. Been referred to Lymphoedema clinic but long waiting list. Don’t know too much about it, but dread having to wear sleeve. Bad enough having no hair or finger and toe nails and one boob without having to put up with this also. I love the good weather and to sit in sun but believe that is not good either. This disease is such a bummer - it never goes away.
Sorry about moans - not like me as I am usually very positive.
While you are waiting for your fellow forum users to reply, here is a link to BCC’s publication called Living with Lymphoedema which I hope will be helpful:
Please do also remember that our helpline can provide support and information, lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm telephone 0808 800 6000.