My Kidney markers are also lower/ worse but this could be a secondary effect of the increased amyloid in the system.  My kidneys are now at stage 3b (chronic) from Stage 2 last month.  I’m told not to worry here as they will recover a bit when SFLC’s are under control.  My proteinuria is elevated also and I’ m leaking 2.0g from 1.3g.  Howeve when first diagnosed this was at 12g/litre so massively reduced.  It has also been completely removed to negligible so must try harder is my end of year comment.

Update is very data based but this is hard evidence so cannot be ignored, however I’m determined to add the power of my mind to encourage my body system to respond naturally and kick the hell out of the amyloid producing plasma cells, BAM in Batman terms.

Symptoms are fairly managable at the moment but the hand cramps are getting a bit worse lately (probably due to Revlimid) so drinking a bit more tonic water (quinine) which is supposed to help,

Fingers crossed for end of Feb results,

cheers Phil

Big drop for a single month especially as we have kept the Revlimid at 10mg’s and introduced the dreaded steroids but only at one-a-day (2mg’s).

My best Christmas present by far.  So having visited London and local hospital recently, I’m hoping the trend can continue.

The other good news from Lomdon, is that following a sneaky 15 minutes with the lead nurse on the new drug trial, which I participated in, two good things came out: 1. They have secured funding to expand the research including other countries to balance the different types of people and also, 2. That they will be inviting me back towards the end of 2016 to participate in another dosing session – that is if the fantatstic progress continues on this incredible research journey.

speak again soon,

remember, ‘it’s the thought that counts’ with your mind and body system so sync them continually in a positive manner, and get the chemistry flowing,

Happy New Year everyone,

cheers Phil

By this, I personally mean that I could do all activities with the family, long dog walks, play golf on a regular basis and go to work.

So when I started taking the drugs and was nowhere near achieving my aim I was very frustrated.  My consultant said I was being to judgemental too quickly and time was needed for my body system to settle down and it will get better.

To cut a long story short it has got better but still not settled into what I consider a long term state of wellness for me.

On Friday, I went for my latest review and discovered that two important aspects were not right as yet.  My Kidney performance was dropping and my light chains were not trending downwards as hoped.

We have adjusted the drug regime several times over the first 3 cycles (stopping the steroids, reducing the Lenalidomide strength) in our quest to find the right amount of treatment to work but also give me the quality of life I am looking for.

It appears that the normal cycle of 3 weeks on and 1 week off is not working for me as my immunity system gets too low during the course of the treatment and has so far required an extra week off (3 on, 2 off) everytime.  My pneurophils are usually at 0.5 at the end of week 4, which leaves me very vulnerable to infection as not many white cells to protect me.

The Doc says that it is still too early to make a call on if the treatment will be the long term solution as need 4-6 months.

Our solution is that he will discuss variations of treatment with London NAC and see what rabbit they can pull out of the hat.

Fingers crossed as my family need me firing on all cyclinders and my Golf handicap is also trending badly upwards !

speak soon Phil

Im pleased with that but not been as easy as I Was hoping as the various ‘anti’ drugs and the steroids make you feel unsettled for best part of the week.  No pain no gain I suppose.  The Doc has reduced my steroids for the second cycle and removed the anti blood clot drug (dalteparin) which has helped.  The aim is to get down to just the Revlimid in a couple of months and this can also be reduced to 5 mg’s (currently on 25mg’s).

I’m continuing to work (from home) as I can be a grumpy old toad but dressed down as opposed to suited and booted and trying to pretend to smile when I feel rotten.  Hopefully the symptoms will ease as I reduce the drugs but the main thing I suppose is that the stuff is working.  Not heard anymore about further involvement in the new clinical drug trial but hope all is going well.  They were certainly ecstatic about the initial phase results of the trial.

Waiting to hear if any cardiac patients have experienced amyloid removal and/or increased organ performance following amyloid removal. Fingers crossed,

keep it real

cheers

Phil

the steroids which I take every 7th day give me most grief.  Muscle cramps, flush red face and struggle to rest/sleep. So Tuesday and following day are my worst but by Thursday feeling pretty good again.

Just need to get to the end of the month for my next review to see if the drugs are having the right effect on my plasma cells.

Fingers crossed

keep it real, spk soon

Phil

Since coming off my last Chemo treatment (cVd) in November following forty weeks, my light chains have been steadily rising.  My clone of plasma cells appear to be really sensitive to any drugs but also predictably relapse fairly quickly (18 to 24 months between treatments.

Seriously annoying.  However, I seem to recover quickly and still lead a normal life so hey ho.  This next treatment is called Revlimid which is a maintenance drug (life time drug) and I’m told by the Doc that hopefully I will tolerate this well and can continue with work, rest and play.  fingers crossed,

I’ll let you know how I go in September after a months worth!

Keep it real

cheers

Phil

quick update:

Drug Trial – They are really pleased with the results.  My dose was considerably lower than the Liver Patients so it was all about safety and tolerance and to that end it passed the test. I think they now want to move on to a dose which has shown to remove the amyloid fibrils in the organs (particularly the heart).  A friend who has Liver involvement and was treated at the same time as me (according to initial results) has had a 50% reduction in amyloid in her liver – wow – fantastic.

My ongoing treatment – I’ve met with my local consultant and we have agreed to start maintenance chemo (revlimid) at the start of August.  This is due to a relapse in my supply (from my bad plasma cells of which I have 5%) with the lambda light chains starting to hit the 70′s (shame the thermometer can’t also reach this number!).

What I can’t quite work out (haha) is that these last few years I tend to go to Hospital feeling great and then they give me drugs which make me feel lousy!  Currently feel fab!

Anyway, off to sunny Spain for a holiday before I start again so put that in your pipe!

Keep it real,

cheers Phil

I then went to Addenbrookes in Cambridge to the gsk Treatment Centre (CUC) to receive the SAP depleter drug and the monoclonal SAP antibody drug.  let me explain how these work in my limited understanding.  The idea with these two drugs is that one strips the peripheral blood of the SAP (serum amyloid protein) taking about 3 days on a constant drip.  On the 4th day (day 1) for trial purposes you then get the Antibody SAP which basically is designed then to travel through your system and attach a couple of molecules to your amyloid entangled in your vital organs.  In my case the amyloid is mainly concentrated in my Kidneys and Heart (also spleen).  This new molecule/SAP formation on top of the abnormal amyloid in the organs triggers the immune system to send out the Pacman defence to go chew this new beast off your organs viewing it as a foreign body.

As one of the very first cardiac patients the guys where very gentle with me in terms of drug levels and volume in one day so I had what was considered a small amount over two days.  The amount I had (I know) through my friendship with the two other patients in CUC at the time was about a third of their dose.  This was mainly due to them having no cardiac involvement and mainly Liver infection of amyloid.  Apparently this organ is more robust and can take more of a beating and recovers faster.

So after 14 days of treatment post dosing (which I tolerated with no side effects of note) I then returned to London as an outpatient to be monitored for a week to ensure no lingering ill effects.  Having then gone home, returned for one day the following week and now just completed my final follow up (3 weeks later) I have completed the cycle.

Obviously with the drug being new, nobody fully understands the long term effects but hopefully these will turn out to be nothing of note as well, other than meeting the purpose of the new drugs to clear the organs of abnormally folded amyloid.

The only feedback I have had so far is that they would like me to go through this all again and probably have a larger more meaningful dose to really get to work on the organ amyloid.  The first dosing was always more about safety than doing the job of removal as the heart is a more vulnerable organ and unknown in terms of amyloid removal.

To complicate matters, my plasma cells that were hit with 40 weeks of chemo last year (ending in November) immediately started to kick-off producing more abnormal amyloid as soon as the chemo drugs were stopped.  This means now that I’m probably going to start maintenance chemo very soon.  I have an appointment this Friday so will know more afterwards.  Fortunately this doesn’t mean I won’t be able to continue with the trial although protocols will suggest a small settling in period with the chemo before going back for a second session of the new drugs.

bottom line is that I hope this maintenance stuff works and secondly, that it lets me  work, rest and play, enjoying a reasonably high quality of life.

let you know more soon,

cheers, keep it real

Phil

I will find out about maintenance Chemo on June 12th when back at local Hosptial.  So that’s all the news for now. Still feeling fine so we’ll see,

keep it real

cheers

Phil (great performance from the Gunners last Saturday) well done boys.

My amyloid production is still going on in the background as far as I’m aware as before the tests my lambda light chains were in the mid 50′s (Below 26 is normal).

The drug has proved to be safe which is very positive and now it remains to gather enough data to gauge the amount required for various amounts of amyloid and which organs respond to what amounts.  A couple of patients on the trial (not cardiac involvement) appear to have a positive reduction in the amount of amyloid in their liver.

The next challenge I face is what and when treatment will start to stop this new production since I have relapsed following the last 40 weeks of Chemo which finished last November.  Didn’t get long but I’m still relatively healthy so let’s just hope that this trial and other trials around the globe make it through the various stages and prove successful.  To this end I will be seeing my local consultant in two weeks time.

I then go back to London for the follow up tests in the first week in June so will let you know how this goes.  Hopefully squeeze in some golf in between!

Keep it real speak again soon

cheers Phil