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Lymphedema diagnosed

Posted 29 April 2017 22:34:54(UTC)
OH has developed lymphedema in the whole of his one leg. We have seen the lympedemic specialist nurse and he has a support stocking. His leg is twice the size of his normal one. Is anyone else dealing with this. I understand it is not curable but manageable o would like to know others experience of living with this.
Posted 30 April 2017 21:40:32(UTC)

eFour weeks after my op (RARP on 26th Jan 2017) I had an uncomfortable lump in my groin, in the next 24 hours my left leg became very swollen. Walking was eye wateringly painful. I was admitted (A&E) and was diagnosed with a lymphocele in my abdomen. After 4 days (Friday to Monday (it was a weekend!!)) I was given the option of draining or nothing. I opted for draining. That afternoon I was told (by a junior doctor) that I should walk (through the pain). I did that and the next morning my leg swelling had reduced. I was discharged . . . see how it goes.

I got my GP to get me an appointment at my local lymphedema clinic - 12 month waiting list!

Five weeks later  . . . . . my left leg (thigh) was just 1cm bigger than the right leg but I still have a large volume of water? in my pubic area.  I am hoping it will drain.

Twelve weeks later  . . . very little change in terms of swelling (slight) and pain (none) but my left thigh and calf is still slightly bigger than my right leg.


Posted 30 April 2017 23:14:29(UTC)

It could be the lymph nodes are affected but it could just as easily be that the nodes are overwhelmed with fighting because the chemo is making them think Graham is under attack!

Did the lyphodema nurse say anything about measuring fluid intake and output? If not, she doesn't seem concerned about his kidneys, which is good news. If you can find your way round the awful search function on here, Spurspark had all sorts of problems with lymphodema although in his case it was partly caused by the trial drugs he was on - try searching for 'sausage fingers'

Did they do his PSA recently?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Posted 01 May 2017 21:01:58(UTC)

Just noticed you say you saw the lymphedema nurse . . my GP tried to get me an appointment with the lymphedema clinic, there's a 1 YEAR waiting list! I am constantly amazed at the difference in the NHS services in different parts of the country!

Posted 02 May 2017 06:39:35(UTC)
Thanks for the replies: nomad, maybe we got to see the nurse so quick because graham was a referral from the oncologist, I don't know. Lyn, Ithe last PSA 5 weeks ago was 0.6 I am off to search for sausage fingers now. Thanks again.
Posted 10 May 2017 22:40:59(UTC)

Hi LynEyre, my legs and ankles have swollen, GP is trying water tablets but I am down to see about stockings.  You say Spurspark was on a trial which partly caused the swelling- I am on the Stampede trial taking Metformin- is that the same trial? If so it could be part of my problem.

Posted 11 May 2017 00:36:03(UTC)

Hi Gromit,
has the GP checked with Stampede team? Metformin has only been part of the Stampede trial for a few months - the hope is that it will reduce the side effects of hormone treatment so it shouldn't cause lymphodema. However, people with kidney problems have to be very careful on Metformin.

I see you have lymph node involvement which could also be the cause - important to check with your Stampede nurse I think.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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