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tom 13 years, 3 months ago.
I had my consultation yesterday, followed by the start of Cycle 5 of Velcade.
My regular consultant is on holiday so I got to see the Professor. He signed me off to start Cycle 5 but could not see any evidence of figures for Cycle 4… so for now I am stuck on 11 kappa light chains… and I won't know if there is any change until I see my regular consultant on September 12th.
The Professor made a cursory examination of my leg (mainly by looking) and declared that in his opinion I definitely had a DVT… in his words 'a big one'.:-( He did say that waiting so long for a Doppler test was not satisfactory but… the interim treatment of Enoxoparin (daily, self-administered blood thinning injections) was the correct treatment so no harm has been done. Apart that is from the on-duty Doctor in the Day-Case Unit who saw me and said that although he wanted the Doppler test to be done my leg was not presenting as a typical DVT and told me that I could use a TENS machine which may well 'do you good'. The machine (which I purchased following his recommendation) offers the warning that it 'Should not be used by anyone with an existing DVT'.
Ah well! Luckily after I used it for the first time my leg hardened up like an iron bar and I made the decision not to use it again until after the Doppler test.
Which is tomorrow (Wednesday)… a fortnight to the day when my Doctor ordered the test as an 'Urgent' request.
Ah well Mk!!.
We will see tomorrow but the Professor signed a prescription for 5 weeks worth of Enoxoparin injections… which is the 'Good News' part of my post.
I will continue with Cycle 5 of my Velcade treatment which will finish on Thursday 18th August followed by the 10 day 'Rest' period…. which will take me to Monday 29th August. The Professor has then given me another 14 days 'Rest' from Velcade… allowing me another week to recover and then my week's holiday in Pembrokeshire… bliss. The reduction to infusions of 1,49 seem to be giving me little trouble re; side-effects and general quality of life (the leg aside) so that augurs well for the future Cycles… as long as it is strong enough to keep chipping away at those 11 kappa light chains.
I was dreading going on holiday mid-treatment but the Prof said they don't do it that way… 'an extra 2 weeeks break is preferable and may well do you good'… so well done Prof.:-) It means reporting for duty and Cycle 6 on Monday 12th September, hopefully fully recharged and ready for the last 3 Cycles.
In the meantime the Professor says that the blot clot will disperse in its own time with the help of the Enoxaparin injections… I hope that it disperses sooner rather than later because I don't want it dictating my daily life and also I want to start walking properly again… at the moment my leg and ankle is too swollen to allow me to walk properly and only then for a short distance…
Ah well MkIII… at least there are some good bits in there.:-)
Dai.
Dai,
I find it quite interesting that you have seen a variety of Dr's from the time you 1st decided that you needed something done about a potential DVT, but not one of them has sufficient clout or nouse or ahem superiority, to insist that the scan is done NOW . Peter had proceedure cant remember what it was, may have been an xray which showed all the little bits of his DVT which had broken away and gone into his lungs.
I suspect that now you have 5 weeks supply of your enoxaparin it will be extended to 6months in total, as Peter was told he would have the clot buster Tinsaparin for 6 weeks but it was later changed to 6months. ON the plus side at least you dont have to go to a Warfarin clinic.
I begin to suspect that your Light Chain bloods are sent to Birmingham and that they take an age !!! This is how it used to be in Ncle until they got there own SFLC analyser. Having said that they still complain about the cost and so its not done as often as needed. Meaning in Peters case for instance he was being given a very expensive drug that was doing no good whatsoever(Revlamind) because blood tests cost too much!
I doubt very much that a SFLC blood test would cost more than in your case Velcade which costs a bomb.
Anyway I hope you get the answer tommorow. no doubt the when and if they find a DVT they will tell you to rush back to the man who ordered it for an urgent consultation and medication. Though undoubtably they wont bother to tell you what you already know. Dare you to see the Doppler man and not tell him your side of the story, and see how much of a panic he gets into when you tell him that as the test was not urgent there is no urgency to see the Dr!
Dear Dai
Sometmes I despair when I hear what messes happen. But silver lining of seeing the Prof is that precious two week break to look forward to.
Hopefully after the appointment tomorrow they will be able to add something to the treatment for the leg. I do hope the swelling goes down before Pembrokeshire!
Very best wishes.
Mavis
Ah well (Mk XCCVIII),
I finally got Doppled and the Doctor was very thorough. Its definitely a DVT and quite a large one by all accounts. I had a nervous moment when he decided to track up into my stomach… but all clear… the DVT is in my upper leg (my bet was nearer down but what do I know).
So continuation on Enoxoparin until my referral to the Warfarin Clinic (by my lead nurse who is also going to supply a couple of compression stockings when I attend for my Velcade tomorrow).
Compression stockings are fun to put on and Janet and I are looking forward to seeing who can bite their tongues the hardest during fitting… at least it is only the one leg this time.
And I can look forward to the home visits from our wonderful District Nurse team after an 18 month gap… they are so very supportive all round.
I hope that the warfarin exercise is a relatively short one (6 months or so) but I won't hold my breath… but saying that my consultant decided enough was enough once my legs were looking good for a while the last time.
Onwards and upwards… and that's just the stocking. 😀
Dai.
What a nightmare for you Dai, i do remember the stockings and injections after having an operation myself quite a few years ago. Its not a nice thing.
I am glad that they know what it is and are sorting it.
I do hope that you feel better in yourself soon.
You take care
Gina xx
Hi Dai
At least you know what you are dealing with. Glad it hasn't travelled any further. Sorry about the Walfarin and stockings though.
As you say "upwards and onwards"!
Mavis
Hi Dai what a nuisance but thank goodness they did identify it in the end. I really dont envy you the stocking and injection routine , just remember not to rub your belly when it stings cos thats what makes it bruise I only found out after several days and my stomach was one big bruise!! love Bridget x ps it will save Janet going to the gym too as she will get suoer muscles helping with those stockings!!
The very best of luck with your lates round of "torture" Do keep us all posted Gill xxx
You know Dai, if I am feeling down or sorry for myslef I just read a couple of your posts Dai and realise how lucky I am 😀 Just kidding the best of luck with your DVT.
I had a DVT followed by a PE a year before my diagnoses, collapsed in the Park whislt walking my dog, They should have picked up the MM then but failed.
kindest regards – Vasbyte
David
Hi Dai
I hope you had word with the tech who did the scan!!!
Janet this is a message for you if they only give you to pairs of stockings go out and buy more,if you have something the size of a bottles when washed put them on bottles to dry,trick i learn,t,if you want to save money have a swear box handy,because you will be .>:-(.
On a serious note i do think it,s awful that you have had to wait so long,and i do hope your fit enough to enjoy your holiday. love Eve
Hello Dia
glad you got your scan if they had done it sooner you would now be further down the road How about a picture of you modelling your sox(very sexy) every picture tells a tale! I hope you have a really good holiday go away and try and forget everything for a week just enjoy your family8-)
Love Jo x;-)
Today (Monday) and Thursday for infusions of Velcade and then 3 weeks off (including rest days and holidays). I am going to have to whinge and bear it because unfortunately the first two infusions of this cycle (5) have left me feeling awful… which is strange because the strength is the same as Cycle 4 and that was a breeze (apart from the unrelated leg problems).
Last 2 days spent in bed because I have not felt like doing anything else… especially seeing as my mobility is restricted to moving from my bed to the chair or sofa.
The good news is that my ankle and leg are definitely showing signs of reducing in size… I can only hope that this is a general trend and not just related to the amount of rest it is getting.
I must admit my spirits need a lift… recent events have got to me far more than I thought possible. I can deal with most things that happen to me but I have found it hard to cope with/accept the hurts and pains of my friends.
Dai.
Oh Dai
Your leg problem may be unrelated but it will have sapped what energy you would have anyway as it tries to resolve it's self and heal, take care and keep going, enjoy your holiday in Pembroke
Helen
Dear Dai you have had the rottenest luck with Velcade , no wonder its getting you down! I d hope your leg and ankle continue to shrink being unable to get about as you normally do is so frustrating Over the last 5 years and countless treatments there have been several times when I had thought a problem was solved following logical thought processes only to find it didnt work like that!!Those are the times when you just want to scream in frustration or curl up in a corner.At the moment I am struggling with fatigue that is so draining , I often joke about being able to cat nap in the middle of a sentence but this last few weeks its so much worse and is making me feel rotten Its not even a quick nap thats needed but however long I sleep its not enough . Like you Ithink recent news of others pain has got to me , being unable to help is awful The other selfish side to it is knowing we can chug along with each treament thinking we are winning but that can change so quickly ! All we can do is keep on going and hope that tomorrow is a better day than today Maybe the sun will be shining or one of my grandchildren will make me laugh , sometimes its the small things in life that make a difference So heres to tomorrow being a better day for both of us Dai love Bridget x
Dai, you keep your chin up. you always keep us sane on here. you are entitled to down days. I hope you start to feel better soon and take care of yourself Gina xx
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