Hi all, I have lymphoedema in my left arm,( non surgery arm) from chemo they think, and have had a full clearance on right side, I have read flu vaccine is given in the top of the arm. Has any one had flu jab in leg or elsewhere because I dont want it on either arm. Thank you
Hi Dawn
I have lymphoedema in both arms and never permit injections in them.
Is the flu jab sub-cutaneeous? (I think it is) If so, I think you could easily have it in your thigh. I’ve been having sub-cutaneous injections in my thigh (to boost my red blood cell count) recently with no problems.
Hope this helps
X
S
Thanks for your info. You seem to know so much, Its great to be able to share information thats why I find this site so useful.
Have you had blood pressure taken, if so do they use your leg.
Dawn X
Hi everyone I have just been diagnosed with lymphoedema,it may have been triggered by a fine needle aspiration of a lump in my axilla,cos within hours afterwards my arm was painful and swollen.I have to warn people now that I cannot shake hands with them as it is too painful.It sounds kind of crazy but I felt worse about having lymphoedema than I felt about possibly having a recurrence of cancer.I guess because it is a chronic condition and there is no cure.
Laura
Hi both
Dawn, I have had BP taken in my thigh and it can be a bit painful - you may need to ask them not to fully inflate the cuff. The main problem seems to be that very often the cuff they use for arms won’t go round a thigh and then pressure can be brought to bear on the patient to let them use an arm.
They can also use a calf, but this is less reliable, I think When I got lymphoedema in both arms a few years ago, my GP wrote a local cardiovascular consultant asking for his advice on taking BP on legs. I asked her for a copy of his reply as I thought it was very useful to carry with me for hospital visits/stays.
Here’s what he wrote:
‘It should be possible to monitor her blood pressure measured at the ankle. This can be checked by putting a cuff around her thigh and listening in the popliteal fossa. Generally blood pressures measured distally are around 10 mmHg systolic higher than centrally measured BP. This is because the pressure wave form changes on passing into smaller arteries, in much the same way as waves become higher and steeper when they pass into shallow water’.
So that’s how they can do it - in their own language!
Laura, I’m so sorry this happened to you. Lymphoedema is such a downer - and I know what you mean about dealing with a recurrence and dealing with lymphoedema - it’s a different emotional toll altogether. I hope the pain settles down - don’t be afraid to get some decent painkillers, prescription strength if necessary, as getting the pain properly under control will help the lymphoedema.
It’s very kind of you Dawn to say that I know stuff. Sadly, I’ve had lymphoedema for 11 years, so I’ve been dealing with it, and meeting people involved with it, for a long time. There is much more awareness amongst bcns and patients now than when I first got it, altho’ the medical profession as a whole still lag well behind.
All the best to you both
X
S
DawnCr - Can you just clear something up for me. Did you get lymphodema in the side that did NOT have surgery?
Bahons - Whilst in hosp they took my blood pressure from my calf.
Angela x
Hi Angela
My GP always uses my calf, too - seems to work for him and me both (I don’t think he has a big enough cuff for my legs!). Last time in hopsital, the nurses used my thigh and that was fine, too.
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Bahons - is it possible to get lymphodema in the good arm? (not that I have a good arm as had bi mx, one node came away with the left breast but they did not go digging for any in this breast, so I think it would be highly unlikely I would get lymphodema in this arm. Is this true?
thanks Angela
Hi Angela
I’m going to sound nit-picky here, sorry.
I know it’s possible to get an arm that’s prone to swelling (but has had no lymph nodes surgery) due to the effects of chemotherapy being administered intravenously - this happened a few years to the wife of a colleague of mine, as well as DawnCR, but I think it’s pretty rare. Whether this is classified as lymphoedema or odema, I don’t know.
I’m not a lymphoedema expert - I think I’m just, if I’m expert at anything, it’s at being a patient with lymphoedema! To get a medical opinion, I think I would be inclined to contact the LSN and ask them the question, as they do have access to lymphoedema experts such as Prof Peter Mortimer, who is based at the Royal Marsden.
For what it’s worth, my little lymphoedema bible says that the risk of lymphoedema with a mastectomy and full axillary clearance is about 20% and if less breast tissue and fewer nodes are taken, about 10%. Neither scenario exactly matches what happened to you, but I suppose it could logically be assumed that your risk was less than 20%.
Other factors which would increase the risk would include having radiotherapy afterwards, being overweight and your age.
Was it a sentinel node you had taken? There have been cases of lymphoedema reported with just a sentinel node being removed. However, I think it’s as well to bear in mind that most people DON’T go on to develop lymphoedema. But it can’t do any harm to take the usual precautions, at the same time getting on with life.
Hope this helps a bit,
X
S
thanks bahons2. In the left breast it was not a sentinal node that came away and I dont know how often it happens that lymph nodes just come away with a mastectomy.
It happened in my right breast too (the lymph node coming away) but this was a lymph node within breast and it DID contain cancer, however the other 3 nodes they took from my right breast did NOT contain cancer.
Angela x
Hi Angela,
sorry not to reply to you straight away but I have been back to work and looking after my granddaughter and have not had time to post.
I have as described by Bahons lymphoedema in my left arm which has not had surgery. They think it was due to chemo or when I had intravenous antibiotics when I was neutropenic. They have said it is very unusual. Originally they thought I might have DVT due to excessive upper arm swelling , I had a scan and a lymphocintogram and all were clear. I was sent to a lymphoedema specialist who diagnosed lymphoedema and I have a sleeve to wear. ( Caused they think by damage to the superficial lymph nodes)
It reduced quite well with exercises for a few months but has recently swollen up again. I am not sure if its due to carrying my grand daughter in that arm without my sleeve. So I have started to wear it again, and hope it will go down abit again. I also have Lymphoedema in my right breast ( I had lumpectomy) and have had taping ( on three days and off for four) should be for about a month which has really been helpful, I am very wary about it developing in my surgery arm as I had a full clearance.
I hope this answers your questions, I will try and reply much qucker if you have any other things you want to know.
Hi Bahons Thank you for information , I am going for my flu jab on Monday so am going to ask for it in my leg.
Speak soon
Take Care
Dawn X