9 months later!

Apologies for taking so long to write an update! I wanted to keep this blog so that fellow myeloma sufferers could at least see what one other person has gone through and perhaps feel less alone but life has taken over.

Since my last blog in November a lot has happened, mostly not so good! Andy’s new regime of tablets caused a few side effects including postural hypotension, where he would become dizzy and fall to the ground if he stood up too quickly, and liver function abnormalities. After persevering for a few months he was taken off the Velcade and commenced on Daratumamab, a monoclonal antibody which works by binding onto the myeloma cells and killing them off. We were hoping that this, together with Pomalidomide and Dextamethasone, would give us a few years of remission.

Unfortunately, over the following months, the feeling in his feet became worse because of the peripheral neuropathy and he also began to have repeated infections. In the last 4 months I have had to take him into our local hospital with temperatures of 40C five times! Not recommended. He was treated quickly with antibiotics and soon bounced back but the doctors could not find the source of the infection until eventually an ultrasound showed that it could have been coming from his gall bladder which, on scans, looked shrivelled and full of stones. To cut a long story short, he had that removed two weeks ago and is at home recuperating. His liver functions are completely normal now so we’re hoping that this has done the trick and we can have an uneventful few months/years!

On a better note, we were lucky enough to finally have the family over from the UK to stay for a holiday. Having not seen them for nearly 3 years it was a much needed tonic for Andy. While they were here I decided to surprise them all, including Andy, with a wedding on the beach!

After Shock.

Good news! The ‘something’ in Andy’s shoulder turned out to be ‘just’ myeloma! We were worried it would be a secondary bone cancer so were very happy to get this news. It does mean that the treatment he’s been having is not working though so yesterday he started a new regime. As you can see from the photos, we’re back to a cocktail of drugs similar to when he was first diagnosed.

The funding for the treatment that the Consultant wanted to give him was unfortunately not approved. Certain drugs are allowed at 1st relapse and this is considered Andys second so we were concerned about what treatment he would get this time round. Luckily Pomalidimide, one of the new generation immuno-modulatory drugs was approved by the PBS from 1st October so he qualified for that and has now started it with Velcade, a drug which kills off myeloma cells and Dexamethasone, a steroid. PVD, as it will now be known, has very good results so we’re hoping it will work quickly and give him a long time in remission. Unfortunately Velcade is an injection that he has to have at the hospital twice a week but we’re hoping, in a few weeks when they know he’s ok with it, I’ll be able to do it at home,

Needless to say, all these drugs have lots of side effects so all the other drugs in the photo are ‘just in case’! One to prevent a bacterial infection, an anti-viral, anti sickness, anti fungal and one to prevent gout! He has these drug for the next 24 weeks when, if all’s gone well, he can reduce them to a maintenance dose.

We’re already trying to work out how we can take a dozen injections to Greece next year…….

More shocks!

I was rather hoping I’d have nothing to report following the ‘sepsis’ instalment of Andy’s Weird Health Year! The sepsis really knocked him about and he eventually had to have 11 weeks of daily intravenous antibiotics. Luckily we could do this at home so at least the days weren’t spent driving in and out to the hospital. We were hoping that, once it settled down, he could go back onto his Myeloma drugs and we could return to normal-ish life. But that was before he mentioned the pain in his left thigh…….

Just to be on the safe side the Consultant sent him for a CT where they discovered that, whilst he’d been off his myeloma drugs during the sepsis, the myeloma deposits that have always been lurking in the upper part of his left femur had run amok and spread to the rest of the femur which was at risk of breaking if he had a fall. Within a week he was in hospital having an intramedullary nail inserted down the femur to strengthen the bone. He was home within two days hobbling around on crutches and, within 4 weeks, has pretty much recovered.

As he had healed so well we hoped that, on our next visit to the Myeloma Consultant, he would just get back onto the Myeloma drugs and return to the normal-ish life we had before etc etc.. Needless to say this this hasn’t happened.

Because the myeloma has spread in his femur, it meant that the treatment regime he was taking has stopped working. This is par for the course with myeloma. Some treatments will work for a few months or a few years. Some treatments work for one person but not another. Andy had been taking Revlamid since his first relapse last year and has done well but it now looks like he will need to change.

Before deciding what he should start next he has had a bone marrow biopsy and a PET scan. The results of these have been a bit concerning. The bone marrow biopsy showed no myeloma but the PET scan showed ‘something’ in his left humerus so he is now in hospital having a bone biopsy. We’ll get the results on Wednesday.

So, like in all gripping medical dramas…… To Be Continued.

Septic Shock!

For those of you who haven’t seen Andy ranting on FB lately I thought it was time for an update.

We’ve had an ‘interesting’ few weeks! It all started with Andy going to the doctor with a painful neck. Whilst being examined the GP saw a nasty mole on his back and was concerned that it was a malignant melanoma so referred him for an urgent appointment with the skin specialist. A few days later he had a skin biopsy and had the fear of death put in him about what this could be and what might happen. We came home imagining the worst! How could he cope with treatment for myeloma AND treatment for melanoma?! Two days later he was very tired and felt unwell but we’ve come to expect this from the drugs he takes for his myeloma so I, like the good nurse I am, gave him paracetamol and went out! On my return he was confused and shaky, with a temp of 38.4 so I eventually thought he should see a doctor. Of course I wouldn’t dream of calling an ambulance (emergency nurses and paramedics never call ambulances!) so somehow got him down the stairs and took him to the Emergency Dept. Within half an hour he had several infusions of antibiotics, noradrenaline and fluids running and was being sent of for chest X-rays and CT scans. To cut a very long story short he had sepsis.

I have to say that in all the years I worked in the Emergency Dept I never came across anyone with sepsis but I’ve since discovered from my advisor in all things medical (thank you Mel!) that it’s quite common and life threatening! 5000 people a year die of sepsis in Australia and the numbers are increasing.

“Sepsis is a time-critical medical emergency that arises when the body’s response to an infection damages its own tissues and organs. It can lead to shock, failure of multiple organs, and death if not recognised early and not treated promptly”. Australian Sepsis Network.

By the time I got Andy to Emergency his temperature was 39.4, his blood pressure was in his boots and his kidneys were beginning to shut down! Luckily for him every ED has a sepsis protocol now and the staff at Redcliffe Hospital leapt into action and quickly started treatment.

Having multiple myeloma and some heart issues, including a pacemaker, made him extra susceptible to complications and he has spent the last two weeks in hospital having lots of tests and scans. They knew the original infection had come from his skin biopsy but couldn’t work out why it wasn’t improving more quickly. Eventually they diagnosed infective endocarditis, an infection of the heart lining which has settled around his mitral valve. He is now home and has to have 6 weeks of intravenous antibiotics which hopefully will get rid of it.

We are feeling very grateful to have such an amazing health care system. It could all have been so different.

Incidentally the melanoma was malignant but is ‘in sutu’ and just needs cutting out. He won’t need further treatment but will need regular skin checks.

Oh, and his neck is much better, thank you for asking.

One year on…..

I can’t believe it’s been a year almost to the day since Andy started back on treatment for his Myeloma. I thought I’d keep this blog up to date but, to be honest, in a world pandemic, it seems minor compared to what many people are going through. We live in beautiful, sunny Queensland where there has been very little Covid and have been able to get out and about pretty much as normal.

Andy was started on Revlamid and Dexamethasone, the first treatment for relapsed myeloma, and I’m pleased to report it has worked well and his nasty blood results are back down to near enough normal. It’s a tough regime though with some unpleasant side effects – extreme tiredness and diarrhoea to mention two of the most annoying – but, as we say often, it’s better than the alternative! So many people are having it far worse. A lot of people with myeloma find that this treatment doesn’t work for them so we’re just grateful that it has for Andy. There are so many more treatments in the pipeline too so, when this one stops working, there should be another to move on to.

Meanwhile we keep ourselves occupied. Friends from Sydney have just visited now that the borders have reopened which was delightful and we have lots of trips planned.

Photo is of Andy drinking cider round a campfire in the Scenic Rim last week. Happy Anniversary!

Myeloma Madness Chapter II

Fluorescence In Situ Hybridization

Well unfortunately it looks like I’ve got to start writing this blog again! Andy’s lambda light chains have been creeping up for the last year and the doctors have finally decided it’s time to start treatment again. This week is the 5th anniversary of his stem cell transplant so it’s actually been a fantastic result but we always knew that the time would come when it would be back.

For those who don’t know, there is no cure for myeloma as yet but new treatments have come along over the last 5 years and things are improving all the time. There are a lot more drugs available and, luckily, Andy is eligible for most of them!

Before he could be prescribed his new treatment, the doctor wanted him to have a FISH test which involved a bone marrow biopsy. The test maps genetic material in human cells and also detects abnormalities associated with cancer. This (somehow!) can help predict a patient’s outcome and whether they are high or low risk. We had expected to get the result of this test 3 weeks ago but it was delayed due to some virus thing that’s around keeping all the lab technicians busy. Thankfully it came back today and we found out that Andy is ‘low risk’ and can therefore take his meds orally at home rather than having to go into hospital every week for intravenous therapy. A huge relief!

His drugs have now been ordered and we collect them next week. Meanwhile the sun is shining and and we continue to enjoy ‘self isolation’.

Happy Anniversary.

We went to the Byron Blues Festival yesterday.  Amazing line-up including Patti Smith,  Bonnie Raitt, The Lumineers,  Sharky Puppy and Andy’s favourite, Jimmy Buffet, plus literally dozens of other amazing bands.  We spent 12 hours wandering from stage to stage, stopping for the occasional glass of Little Creatures Pale Ale and sampling food from pretty much every corner of the Earth.  We’ve sold our campervan so, at about midnight, we staggered back to the campsite and slept in the car.

This morning we realised it was Andy’s 2nd anniversary.  Two years ago today he had his stem cell transplant.  Who said there’s no life after Myeloma!

 

 

 

Time of the Month

Myeloma is treatable but incurable and everyone with it lives with the knowledge that it will come back.  This week is the time of the month all MM sufferers dread. The week between having blood taken and seeing the Consultant. One of the contributors to the Myeloma Facebook page described it as being on death row!  Andy had a triple worry this time as our new Consultant at PA in Brisbane thought he should do a couple of other things as well as we are new to him so Andy not only had a blood test but also a 24-hour urine test and an MRI to assess the state of his bones. His original MRI had shown a fracture of T12, abnormality at L1 and some small myeloma deposits throughout his body.

Andy has lambda light chain myeloma and last month these were slightly elevated.  Not a problem as a one-off but concerning in case it’s an upward trend. Its difficult to stop yourself thinking what if it goes up again this month?  Will he need to go back on some sort of maintenance drugs? Will he need another stem cell transplant?  What if the MRI shows further damage or spread? What if the bloody thing has come back?!

After the usual hour and a half wait – outpatient clinics run late whatever hemisphere you live in – we finally got in to see the Registrar.  All bloods normal, urine normal, MRI shows no further damage.  He is still in Complete Remission.   In fact, they don’t want to see him for 3 months!!!  3 months!!

It feels like we might be able to think ahead a bit and will actually get to see the boat waiting for us in Corfu that we’ve bought unseen. Thanks so much to all our  well wishers.  You can have a few weeks off now (but don’t go too far). Anyone who fancies a few days in Greece can now book the flight.  In fact, I might even book ours.

New Beginnings

 

It would be fair to say that this last year or so has not been one we would like to repeat any time soon!  Looking back on it now I wonder how we got through.  Family and friends helped hugely of course, and we wouldn’t have managed without them but, at the end of the day, it was just us.  Our world narrowed down to our one-bed flat with occasional visits to the hospital.  We spent most of the time in that little space not knowing what was going to happen or if we’d get through it.

I don’t think I even realised this until we got back to Australia this week and a couple of things brought it home to me.  Our boat, Matilda is on a mooring in Pittwater and we went up to see her and catch up with Andy B who brought her back for us. Apparently it has been raining for the last week but the sun was out and the sea was sparkling. Our friend Rod, who will be selling Matilda for us, took us out to see her.  He is the most enthusiastic person I know and is always up and out doing something. “This is a fantastic time to be here” he said, “There’ll be loads of boats coming down soon and loads going on.  You’ll have a great time”

When we got back, I read a message from Andy’s friend, Jenny, saying how good it was to hear he was able to go back to Australia and ‘glad your world is big again’!  It was only then I realised how small our world had been.  We hadn’t allowed ourselves to think about another life outside it

So off we go again with a yet another new beginning. Hope to see you all out in the big world!

View from Matilda’s cockpit

A Year in Gosport

Doesn’t have the same ring to it as ‘A Year in Provence’ but it’s a year today since we arrived back in the UK and Andy had to start his treatment for Multiple Myeloma. This included 5 months of chemotherapy prior to a stem cell transplant in April followed by 6 months of trying to mend all the damage done by the treatment! Not sure we’d have done it if we’d known what was in store! We might have sailed off into the sunset! However, we saw his Consultant again yesterday and all bloods are still within normal levels so it looks like we can officially get on with the rest of our lives! This rotten disease will come back but all we can hope for is it doesn’t for a few years and, by the time it does, new treatments will be available.

The last few weeks have seen Andy improve in leaps and bounds. We thought he looked good at Barb’s wedding back at the beginning of September but he’s even better now. We had a couple of weeks with Anne and Gordon (off Equinox) in Abruzzo in Italy. A combination of warmth, blue sky, good food and cracking company really helped him (and me) with his convalescence. And the 5 litres of Pecorino at 8 euros may have been a contributory factor!

Since we’ve been back, we’ve had a busy time firstly helping on the Ocean Cruising Club stand at Southampton Boat Show and now trying to sort our lives out before flying back to Australia on 6 November. As we’re trying to sell a property and buy two others before we go, this is adding to the excitement! We like a challenge!