I was right as well as I have some nerve damage in my legs for which I’m having to take some pregablin (100mgs) along with some slow release morphine stuff for the general pain. All in all though it has been successful and I got a full response so fingers crossed I’m treatment free for a while. My serum free light chains are now back to normal (lambda was 11 last reading back down from 100 odd before treatment)
I’m back playing a little golf and walking the dog etc to build up some strength but feel very tired afterwards.
The drugs make me a little sleepy so trying to reduce dosage from 15 mgs to 10 then 5. Tried zero yesterday but needed some so am having to go back up to 5 mgs today!
Hoping to get back to work in next few weeks to feel my sanity has recovered as well as my health. Speak again soon team, byezee bye and keep believing
Phil

Anyway here is to the Mouse – they managed to find and strip the SAP in the blood which was bonding the amyloid together now need the second part to disperse the fibrils from the organs. If this latest stuff can keep me stable for another couple of years I think we’ll be ok! Target handicap 10 by June 2012 – come on! Thinking of a set of CG16 irons from Cleveland range to make the move!

sorry for not keeping you all updated.  Been getting lots of questions lately so thought I’d post a blog.  I’m still feeling great and it’s been 15 months since my autologous stem cell rescue.Trouble with this damn disease is that you can feel great but underneath the blood can be going funky!

As a result of this unknown, I continue to have monthly blood analysis carried out locally and also send to London – ‘Amy’ Centre.

I will shortly (end of July) be popping down for my 6 monthly check up so hopefully will have some more news on the long term stuff very soon.

Managed to walk a Marathon (26.2 miles) in May which took me 11.5 hours – stupid boy!  Just wanted to prove to myself I could do this even with ‘Amy’ going on inside!  It was mad really as I had done no serious physical exercise above walking the dog and golf since 2007!  The walk itself was no easy marathon as it involved 5 peaks of about 1000 feet around the derbyshire peak district - nuts.  The walk details are here http://www.leadenboot.org.uk/.  Never again!

Anyway, seem to have no lasting symptoms from the walk and even my slight water retention and breathlessness from the ‘Amy’ has virtually gone! 

Keep believing, speak soon

Phil 

The other good score I noticed from latest consulation was that my serum albumin is now 35 which is the highest it’s been since diagnosis (March 2008 – was 12) and probably explains why my water retention is nearly non existent nowadays.  Cool.  My kidneys remain damaged and leaking protein (proteinuria was 3.4 in June) but this has also reduced (was 12).  My renal expert says that the kidneys are always last to respond but she is not hopeful that they will completely repair.  The main thing is that they are working normally and the tabs are protecting them for the long term.  The other symptom I’ve noticed improving is my breathlessness.  I’m hoping this is a sign that my ‘thickened heart wall has started to reduce since the SFLC tap has been switched off.

My stamina has slowly returned since transplant and am now playing 18 holes of golf easily. 

I’m due to visit NAC again in December so will be asking if I should and could increase my physical exercise.  Is this a good thing for a heart in my condition?  We’ll see.  Maybe squash and footy could be back on the agenda!  Too old I hear you say!

spk soon

Phil

just received my serum free light chain results for August and thankfully they are still reading in the normal range (Lambda 5.6 – 26.3 mg/l).  My lambda was 20.0 and my kappa was 10.9 (normal is between 3.3 – 19.4 mg/l).  This gives me a ratio of 0.55 with normal range between 0.26 – 1.65.

My overall symptoms are reducing in terms of water retention and breathlessness, although I have picked up a chest infection which hasn’t helped my breathing.

Ever since my pnuemonia in 2008 (same time as original diagnosis of amy) I seem to get chest infections easier and have had one a year so far.  I’ll take this though if the rest of me keeps ticking!  Trick is to get on the anti-biotics quickly especially as my bone marrow is still not fully mature.  It has been 5 months since my transplant so nearly there.

Still waiting for confirmation if I can start eating pretty much anything as I have avoided some stuff with live bacteria in etc.

Overall feeling much better and hopeful that my body will start to work off amyloid deposits around my heart and kidneys now that my SFLC’s have been suppressed.  Going to London on Dec 21/22 which will give me proof of total body load of amyloid deposits.

spk soon

Phil

My other symptoms appear to be improving also as my protein leak has reduced to 3.4g/l this was well over 9.  Been told that my kidneys will never fully recover but remain normal in functionality.  My heart function has also improved “what is more interesting and very promising is the remarkable rapid improvement in systolic function on echocardiography.  If the SFLC’s stay suppressed for a long period then I’m hoping that the amyloid deposits around my organs (especially my heart) begin to reduce which hopefullt would reduce the breathlessness when going up hills etc.

I will continue to take my ramipril tabs to protect my kidneys and the simvastatin to check my cholestrol (which appears fairly normal at presnt 5.3 mmol/L.

My water retention is vastly improved and I only take furesomide tabs maybe once a month (weird?) for the swelling at the bottom of my legs/ankles.

My weight has come back to about 74kgs which is still slightly under my baseline prior to hospital.  The chemo rips you gut and throat cells about a bit so stomach has been a bit tender (acid reflux etc) so I’m taking some omeprazols to reduce the acid production and I’m told they are pretty good after a night out!

Most of all I feel human again and am starting to play 18 holes of golf (the hills can be tricky but take my time).

stay positive,

spk soon

Phil

The big review for me is in June at the National Amyloidosis Centre where I’m hoping that they give me the thumbs up and even news that a little overall reduction in the fibrils already attached to my organs has occurred, would be nice.  I know these can take a while to loosen off but if the supply has been stopped I could experience a reduction (i.e a sligthly less thickened heart wall? – This was 15mm).

I’ve got more energy each week and am walking the dog and playing a little garden golf but still get tired easily.  I’m hoping if results go well this month that I can return to work and a bit more normality.

If you or a friend or relative have this thing just keep believing – I know it’s difficult and that everyone has a different health situation – the trouble with this condition is that you don’t know you have it until something goes wrong and the amyloid has probably been pumping into your system for months maybe years.

Let’s just hope that they make a breakthrough with a drug that disperses the fibrils from the organs and understand plasma suppression drugs more so that dosages can be altered effectively.

speak soon

choo, Phil

I am feeling much better as the weeks pass and am starting to do some short walks and hit a few gentle golf shots in the garden.  It feels great.

Keep it real, keep believing, spk soon

Phil