[DaiCroParticipant]

I have been complaining about pain and stiffness in my left leg for about 4 weeks or so – my consultant says that she does not believe it to be Velcade related as there is no history of DVT with Velcade – but still it is there… and IMHO getting worse. I report it on the monitoring sheet (basically for PN) that we have to complete before each Velcade infusion.

My next infusion is on Thursday and as it is my last infusion of Velcade Cycle 4 I want something done… including seeing a Doctor – I do not want to go into a 10 day so called 'rest' period with the possibility of a DVT in my leg – I had one post radiotherpy at the start of my journey (a year prior to being diagnosed with MM) and that led to a Pulmonary Embolism… which rendered me unconscious on the floor and a 5 day visit to hospital… and I know how much worse it could have been, believe me.>:-(

I have a consultancy meeting next Monday but I want it sorted before then.

Has anyone else had anything similar? When I first arrived in Nottingham I was on regular Warfarin treatment with home visits from the District Nurse team and I wore a compression stocking (on the same leg as now) but my consultant took me off it and until now I have had no problems.

Over to you.:-)

Dai.

[MinParticipant]

Dai
OMG Peter had dreaful DVT in both legs with velcade which turned into many clots in his lungs. Too many for them to count. Pulmanary embolisms.

There is a simple blood test called a D Dimer or D diamond test which takes no time at all for the results. Following which a scan ( type pregnant women get) for the clots.
In his case he had big hard lumps behind his knees and they were hot to touch too.
He was complaining of being breathless for weeks before they sent him for the d diamer test The breathlessness was caused by the clots on his lungs. The Doctors poo poohed his complaints about being breathless for two weeks or more before he saw his consultant and told him.
Like you he had been on warfarin too at the outset of diagnosis. He went onto daily heparin injections for 6 months as a result of Velcade
Bottom line Dai is you know your body and you cannot wait around with DVTs or we wont get to read that book you have nearly finished !!!! (wishfull thinking )
Min

[eveParticipant]

Hi Dai and Min
This is the same with Slim.Pain in heel then calf.I took him straight to Ashford hos.it was Sunday,new DVT clinic had opened.A&E.had stupid nurse telling me there was no clinic,made her go and check,agreed with me but kept us waiting 4 hours by then DVT clinic closed.started treatment injections had to come back next day for scan.no clot in leg.

The following week ,Easter Saturday again A&E sent home,then Monday emergency
admission .ITU ten days 12 days on ward.CAT scan only done because Slims blood test showed,infection had not reduced enough,never out of breath,never coughed even though he had septic pneumonia all over his lungs.Took everybody by surprise he had mass clots all over lung,plus wedge shape holes!!! takes a long time for that damage.6 months on heparin injections.
What I do not understand is some people are automatically put on injections with chemo treatment,some are not an injection cost £15 a day,in the grand scheme of things it is peanuts.
If you get no joy from doctor,go and park yourself in A&E,doctor should have sent you for you peace of mind,go to A&E and take that book with you just incase.best of luck Eve

[zasrsParticipant]

Hi Dai

Poor you i agree with eve and min i wam a ex district nurse and the d dimmer test takes a few mins it is not conclusive and if poss you will a scan to confirm all very easy to have Can you phone you gp surgery today they should be able to do a d dimmer. It really is scarry reading other posts at the total incompidence of some, not all, thank god nhs staff!! Is it just me, but some newly qualified drs think they know everything and they know nothing and will not listen to patients, gordon and i met one in Kings last winter he was so far up his bottom i bet he could not see daylight!! Good luck Dai get that leg tested ASAP

Sarah:-D

[DaiCroParticipant]

Hi Sarah,

I'm up and about earlier than usual today… trying to give the leg some gentle exercise – we are off to the Garden centre for a quick visit after lunch and then home and rest it up.:-)

I know the inherent dangers but it has been like this – and reported on every occasion – for the past 4/5 weeks… I am just determined that something happens tomorrow at my last infusion of Cycle 4 – as I have said elsewhere – some Enoxaparin/Heparin to take home and administer at the very least… I'll settle for prevention until i see a consultant on Monday am. 🙂

The nurses are keeping a close watch but they can't oreder up treatment… I need a doctor for that and I am going to insist on seeing one tomorrow.8-) 😐

Thanks for replying.:-)

Dai.

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