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Matilda - Waltzing Round the Med
S/V Myeloma - End of Cycle 4
JJ
18/02/2015

It's very difficult to write a blog when you don't do much! It's too cold and wet here to venture out much and we spend a lot of time indoors watching daytime television. When I was working I always dreamt of having time to read or to have a lie-in in the mornings and or take up a new hobby. Now that I can, it's not quite what I thought it would be like! Even on the boat, we were always busy doing chores or mending something or planning the next trip or just sitting and looking around, not to mention having to meet people all the time and drink beer and talk!

A high spot of our time now is our monthly hospital appointment where we go and get the results of the treatment Andy is having. As the Aussies would say, he's had a bit of a rough trot this month feeling pretty tired most of the time but if the blood results are good, it makes it all worthwhile. Yesterday, we saw our Haematology Consultant who told us that Andy's light chain paraproteins, which are measured to monitor his myeloma, are now 20.4 mg/lt. That's officially within the NORMAL RANGE!!!

We've also seen the Stem Cell Transplant Consultant this week who is very pleased with Andy's results and has pencilled him in for a transplant on 10 April subject to a few more tests. This means one more cycle of chemo before he starts the preparation for the transplant. I think we've got to the tough bit now and Andy's got a few miserable weeks ahead of him but we are concentrating on the fact that in 11 weeks, he could be myeloma free!!

Meanwhile S/V Matilda had a great Atlantic crossing and is now in St Maarten in the Caribbean where Andy B and his crew are doing a few jobs on her and getting her anti-fouled. Judging by the photos on Facebook, they are also representing us well by drinking ice-cold Caribs and dancing on the beach with Del and Gary on Panormitis. Goodonya lads!

Photo is of Isle of Wight taken from Lee-on-the-Solent

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18/02/2015 | Del Whitmore
It goes without saying that we miss you two dancing in the sand and knocking back a coldie or two. Your turn will come and we can celebrate together.
23/02/2015 | Sandy Duker
Glad to know the chemo is working - hang on in there. Congrats to Matilda on her Caribbean arrival.
Blue Water Section - Cruising Association
S/V Myeloma - End of Cycle 3
Jane
20/01/2015, Gosport

Unbelievably another month has passed on S/V Myeloma. We had a pretty good Christmas with Andy well enough to drive us up to London on Christmas Day to spend the day with Barb, Dan and the grandchildren. He had been worried that he would be having one of the down days or that they would have streaming colds which would mean he wouldn't be able to go. We had a lovely meal with them and then had Boxing Day with my brother and family eating more fabulous food.

Since then, we've pretty much stayed indoors keeping warm and trying not to be too envious of the photos on Facebook that our friends in Australia keep putting on of them on the beach, at a barbecue, camping in the bush, eating at outdoor restaurants or drinking cold glasses of something!

Today we had to go and get Andy's blood results following his 3rd cycle of chemotherapy. Last month his light chains were 62 mg/l which we were thrilled with and we were hoping for another good result. Andy, of course, being the competitive person he is, had decided he had to get down to at least half of that. I've spend the last few days trying to get him to be realistic so that if they hadn't come down, he wouldn't be too disappointed. You know that small print that says these rates can down as well as up? Apparently it's the same with these light chains. They can suddenly start going back up instead of down and then the treatment has to be changed. Well, I am pleased to report that they were 34 mg/l which means that they are almost 'normal' (between 5.7 - 26.3) and he is on course to have his stem cell transplant in April.

All he's got to do before then is have another bone marrow biopsy, an echocardiogram, a 24 hour ECG, a lung function test, a kidney function test, several more blood tests and an infusion to strengthen his bones! Piece of cake!

Meanwhile S/V Matilda is on Day 11 of her Atlantic crossing and is hopefully on course to arrive in the Caribbean in another 8/9 days. We haven't heard from Andy B so not sure how he's getting on so if you see them, let us know!
Meanwhile Happy New Year to you all. Wishing us all a fabulous 2015 with good health and happiness. And please keep putting on the gorgeous photos. Gives us something to aim for!

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20/01/2015 | Annette Hair
Hi Jane and Andy, so darn happy things are going well for you.....keep up the good work! Cam expects to arrive in the next 8 or 9 days too so I'll tell him to keep an eye out for Matilda next time I SMS him. Lots of love to you both xxx
01/02/2015 | Lizzy & Mike
Happy New Year! Pleased all is going in the right direction in Pompey, think of you often. Will look out for Matilda if she arrives in our neck of the Caribbean (aka BVIs). And expect you to follow as soon as poss!
S/V Myeloma - End of Cycle 2
Jane
23/12/2014, Gosport

S/V Matilda had a pretty uneventful trip down to the Canaries and is now resting in Las Palmas while Andy B pops home for Christmas.

Meanwhile on S/V Myeloma we have had a more eventful month. Andy has just finished his 2nd cycle of treatment of Dexamethasone, Cyclophosphamide and Thalidomide. At the end of each cycle, he has bloods tested to assess how the treatment is doing and whether they need to tweak his medications.
His myeloma is measured by the amount of light chain paraproteins in his blood. There should be none but his first blood test showed 722 mgs/l which was one of the ways they diagnosed myeloma. His level needs to be below 90 mgs/l before he can be considered for a stem cell transplant and they expect that to take 4-6 cycles of treatment.

At the end of his first 28-day cycle of drugs, his paraprotein level was 203 mgs/l, a staggering 72% reduction which was, to say the least, an incredible thrill for us.

Today, at his second cycle review, his paraprotein was ..... 62 mg/lt! An unbelievable result!

An added bonus is that he has had his steroids reduced to once a month. These have been giving him some miserable side effects so we're hoping he might start having more good days than bad now. A very welcome Christmas present.

We hope you all have the best Christmas and a very Happy, Healthy New Year.

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23/12/2014 | Campbell Hair
Fantastic news, good work Andy, it must be all of the intensive nursing that you are getting mate. Well done Jane and Merry Christmas from the crew on Annecam
24/12/2014 | Diana and Alex
Such good news from Blighty. Well done the both of you. Christmas might not be merry, but we hope you two savour the taste of it together, still the Matildas, on land or at a sea. All the very best for 2015, from the crew on Enki II.
02/01/2015 | Del Whitmore
That has to be the best Christmas present you could get.......For 2015 our wish is that this incredible progress continues...... from Gary and Del on Panormitis
03/01/2015 | Nigel Ellis-Gray
Wonderful news about the beneficial effects of the treatment. The only thing to say I guess is keep taking the tablets! Love to both from Nigel & Laurence of s/v Lammergeyer.
S/V Matilda’s Gone a’Roving
Jane
05/12/2014, Cartagena

I had a bitter-sweet trip to Cartagena this week to pack up our stuff on Matilda and hand her over to our friend, Andy. Unfortunately my Andy isn't allowed to fly at the moment so my brother very kindly came with me to help. We had two lovely days down there in the bright sunshine, 21 C with that blue, blue Mediterranean sky.

Packing up was pretty miserable. We have masses of stuff aboard as we thought we would be on her for 3 years at least if not longer. I had literally packed the kitchen sink! I did as much as I could but my heart wasn't really in it and I left Andy B with the problem of where to put the rest. Overboard on the way to the Caribbean I expect!

I know he'll look after Matilda incredibly well and wish him a fantastic trip back to Australia but, after waving goodbye, I couldn't help shedding a tear as he left us at the airport to go off on what should have been Our Adventure.

Meanwhile we've got a bit of a trip of our own. Not so adventurous perhaps but certainly different, packed with highs and lows, good days and bad days but, hopefully, with the same amazing end! Home and safe.

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06/12/2014 | Janelle
All the best for you all no matter what is ahead.
From the Whitmore kids.
One Down, Five to Go
Jane
26/11/2014, Gosport, HANTS

I've been trying to think of a catchy title for these future blogs but nothing seems to be appropriate somehow! Last month Andy started his treatment for myeloma. The photo shows his month's supply of drugs he now takes. He has to have high doses of Dexamethasone, a steroid, weekly chemo drugs called Cyclophosphamide and, bizarrely, Thalidomide which is an immunomodulatory drug. Side effects include mood swings, nausea, vomiting, constipation, diarrhoea, headaches, insomnia, fatigue, stomach pain, indigestion, fluid retention, increased blood sugar, increased appetite, loss of appetite, muscle weakness etc, etc. To counter-act some of the above, he has Ondansatron, Metachlopramide, Allopurinol, Amitriptyline, Paracetamol, Movicol, Immodium, Tramadol. He will also start having monthly infusions of Bisphosphonate to strengthen his bones which the myeloma attacks. When he's done five or six 28-day cycles of this, he will be able to have an autologous stem cell transplant (where they harvest his own stem cells from the bone marrow) and after that, he should be in remission!! Sounds pretty simple doesn't it?!

He's just finished his first cycle. It wasn't too bad. A few days of extreme fatigue, a couple of days of feeling really down (but as Facebook is full of everyone we know either heading down to Cap Verdes in their yachts or drinking cold beer in a very hot Australia, hardly surprising!) and a few nights of no sleep. Today we went to find out the results of his first blood test and can report all is good! Treatment appears to be working, all blood levels are heading to where they should be and he is on course for his stem cell transplant in April or May. If this had sound, you'd hear us going YESSSSSSSS!!!!!!

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