Home - Safe and Sound
9 August 2016
Help Make David’s Third Fight for Life a Charm!
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David's on the final countdown...
20 July 2016David's on the final countdown... about 3 weeks to go until he's home. He's healthy, he's happy, he's smiling and joking, he's walking and biking around Wurzburg, he can't wait to come home... and he's cancer free. Lucky, lucky, lucky!
After the last port infection David lost weight and strength. He had a rough couple of weeks regaining strength and positivity but could take advantage of delicious European summer foods without fear of middle age spread... and he's cancer free.
David was dreading another surgery to put in a new port for the last round of Blin, but the marvellous doctors did an inspired lure (IV line thingy) insertion which has lasted without problem for 3 weeks. So, no further surgery, last round of Blin going on... and he's cancer free.
So many reasons to be grateful... medical progress in cancer treatment, amazing medical expertise coupled with inspiring compassion and humanity in friends and experts in Wurzburg, wonderful support from friends and networks in New Zealand and across the world, Skype and email to stay in touch and in the end, job done. David is healthy again - 2 little boys, David's mother and lots of friends will be very happy.
Let's get these kinds of treatment into New Zealand.
Wohoo! Can't wait to see you Mr Cotton.
Lucy
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David - hopefully on the last leg of the treatment
3 July 2016My last update told you of doctors trying to find the source of an infection David had been fighting. Soon after I spoke to him, he spiked another fever brought about by the doctors flushing out the port line - they found the infection source.
That afternoon he avoided another bone marrow biopsy but had surgery to remove the infected port line and was given further antibiotics.
David is now home recovering from the infection and the beginning of the last round of Blin has been deferred until Monday (German time) to allow him a bit of time to recover.
As a friend commented... just when you think it's the home stretch...
So now, he's on the mend and once again showing signs of humour and energy. He will begin the last Blin round on Monday, this time delivered through IV lines and hopefully be back to us in NZ in about 5 weeks - cancer free again.
The GiveaLittle page has two more days to run accepting donations so I will take this opportunity to thank all those who have shared David's story, supported him financially, emailingly (is that a word?) and on social media or in other ways. I know beyond doubt that every single bit has counted. Thankyou.
I hope the next update will talk of David's successful run on the last round of Blin.
I also hope that we will hear about this treatment and other immunotherapy treatments in our various countries as a medicine thAat is easily available to people fighting cancer. With sincere thanks again.
Lucy and David
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David's latest - Last round of Blin but not an easy road
1 July 2016David has been away for almost three months. He has two Blin rounds under his belt, a biopsy result showing complete remission and is hopefully on the last run home. So lucky!
In the two week break his body gets between Blin rounds David managed to get out of Wuerzburg and spent a few days in Rome. It gave his body and mind a break from the isolation of living temporarily in a far place and something to keep him busy. Unfortunately, he was also periodically spiking fevers.
He's back home in Wuerzburg and the fevers are still coming and going despite some hard-hitting antibiotics. The doctors think it may be another port infection. He's been feeling under the weather for days and has lost weight again.
As I write this he is in hospital - today is the day he should be starting the last round of the Blin. However, they are flushing his port line to check for infection and may do a further bone biopsy. He may have the port removed and finish the last round on IV lines. A "tough day at the office for David."
Happily, he's in the best possible hands and the medical team will do their best to fix him up, do the last round of Blin and send him home safe and sound.
It's pretty lonely stuff, though. If you have a moment, send him a message. I'll update again in a couple of days.
With thanks. Lucy
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David is half way through!
5 June 2016David has now been in Germany for 2 months. In that time he has gone from very sick to leukaemia-free and been lucky enough to reconnect with the wonderful friends and medical gurus he met 5 years ago.
David is building up his strength, biking and striding round to get back on form. Despite the bike rides along the River Main and through vineyards, he can't wait to get home. Drop him a line to say "Hi" and start the countdown.
So blessed to be part of this success story. I hope access to this kind of treatment is soon everywhere and easy.
The photo shows his "kiwi" patch on his Blin bag. In Weurzburg David remains "Kiwi Dave".
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Remission testing results... the legend continues!
20 May 2016David has had the fantastic news that the results of his tests have come back as clear as they can possibly get.
In his words: Testing has confirmed I am in complete MRD (Minimal Residual Disease) response after the first round .
In simple terms: No detectable signal indicating the presence of Leukaemia cells, the disease appears to have been wiped out in less than a month!
An exceptional result, thanks to the M41 team at the Uniklinik Würzburg
My words:
Maybe they should bottle his immune system - apparently it's unusual! (for those of you who have known him longer... maybe weird? :-). So now David is healthy and doing well.
Thank you for your support.
Lucy
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STOP PRESS - The magic juice worked!
11 May 2016Check this out - I hijacked it from David's facebook page.
Dave Cotton feeling thankful.
4 hrs ·
Hot off the Press!
Bone Marrow result has come back showing complete remission after the first round.
Still awaiting the MRD (minimal residual disease) number. This number will show how deep my remission is. Approx. a week away.
Cheers
Dave
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Life with the Blin bag - David's "behind the scenes" look.
8 May 2016As David reached the last few days of Round 1 of Blin, he put together a series of photos showing life with the Blin bag. The medicine is continually infused from this bag for 4 weeks, followed by 2 weeks off.
So, please have a look at life with Blin - in his words its so much better than chemotherapy - the future of cancer treatment.
I called the Blin bag "Rover" as is a bit like a dog on a lead - photos have been uploaded to the gallery on Givealittle.
So.. coffee with Rover, Rover on a chair, Rover's insides, Rover out for a walk, forgetting Rover and walking off (ouch!) and a shower with Rover.
David is now off the Blin for two weeks. Wohoo!
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David's update... 3 days out.
1 May 2016Three days on since I was discharged from the Krankenhaus, and each day is a small step toward feeling a little more normal, even starting to make small meals again for myself smile emoticon.
Part of my day is negotiating the three flights of stairs to access my room on the top floor when I come & go. This is a good thing as I have lost quite a few kilos, most of it muscle, especially off my legs, so the stairs are a good way to rebuild along with some walking (sometimes very slow when fatigue sets in). Don't think I would last long behind the 45kg lawnmower I was using in Feb to do my lawn mowing run, thanks for taking it over Aaron, divine timing :-).
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David is out of hospital Update #11
28 April 2016Yesterday, Tuesday, David came through the surgery to put in a new port. The port is a long-term way to deliver the Blin safely without putting in new lures etc each time (layperson's understanding!).
He had a transfusion of platelets beforehand because his levels are still building and obviously, if you are having surgery, you need to be able to clot blood. :-)
David was discharged on Wednesday and is now relieved and happy to be back in his German home with the lovely couple who gave him shelter last time. He continues to be surrounded by wonderful people who keep an eye on him while he rebuilds strength and good quality blood.
Huge thanks to the donors who have contributed to David's fight. With the extra time in hospital as well as the additional surgery there will be extra costs and you have been instrumental in giving him peace of mind and allowing him to focus on getting better.
I hope that the news from here will be less dramatic but I shall continue to update...
Thank you again for your support, thoughts, interest, prayers and goodwill.
Lucy
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David's update - Sunday 24 April.
25 April 2016This is taken off David's Facebook page - hence references to "likes" etc. He's had a boost of haemoglobin and is now successfully producing some good blood. The operation to put in the new port should be on Tuesday but David is on good form and hopes to be out of hospital by Wednesday.
David: feeling excited.
Today is a much better day, all my blood counts are starting to recover on their own merit, in particular white cells & platelets, two very sensitive markers for my ALL. The infection markers have also subsided to safe levels. So all go for the new port on Tuesday, then I can resume normal transmission outside the hospital.
Thank you all for your likes & comments of support, it has all been priceless and put many a smile my dial.
Cheers!
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David's Update #7 - Much better but "still in the trenches"
21 April 2016David's Update #7 - Much better but "still in the trenches"
David was readmitted to hospital in Wuerzburg after an infection got hold of him and he went downhill.
He's still in hospital but a lot better - two days ago he could barely hold a conversation and now he has a sense of humour again. Wohoo! The doctors have put him on a steady diet of intravenous antibiotics and removed the pict line so his body has a chance of recovering from the infection.
David is still neutrapenic - he doesn't have enough white blood cells to fight infection by himself and his platelets and haemoglobin are also low so the doctors want to get rid of the infection before they do the surgery to put in the new "port" - the method for infusing the Blin. They are keeping him in hospital until Tuesday.
David is not so keen on hospitals but appreciates the wonderful efforts of the doctors. He's doing some MYOB work from his bed, having negotiated the system for buying data in German and wanting to keep his brain working. He would love a bowl of fruit - it you've been in hospital anywhere you will understand.
So - he's better, but not better enough. Please keep thinking of him.
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David's update: Things are a bit grim.
19 April 2016So far...
The Blin has been doing it's job with accompanying fevers etc. As the leukemia cells are knocked out and David's existing white blood cells etc are busy being used up killing leukemia, he has had to have occasional transfusions of platelets (the ones that coagulate blood) or haemoglobin (the ones that carry oxygen) to help him along. The wonderful doctors in Wuerzburg know what to expect now and are right on to it. All that went well and David was discharged. We updated on that.
He went back to stay in the flat where he stayed last time - the "teen" flat belonging to a wonderful German couple retired from the medical profession. They have been looking after him and checking on him. They are wonderful people.
He's spent the last 2+ days going downhill, getting more and more exhausted and unable even to sit up for more than about 15 minutes for a Skype call. In the last 3 days he's lost 3kgs of weight. So, back into hospital for a check up and now he's been readmitted. It looks like the pict line put in before he left NZ (through which they deliver all the medicine) has become infected. So, now they are loading him with antibiotics and maybe will have to do the surgery in a day or two to remove the pict line and place in a new port (new way to deliver the Blin). Please, keep him in your thoughts and prayers.
Thanks, Lucy
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Please share the Givealittle Page further - 3 and a half months of treatment to go.
17 April 2016David started fighting for his health and life at age 40 and been on this road of survival for eight years - if you wrote it down, much of it would be an unbelievable story of survival, determination and good luck. With his treatment in Germany today, he is once again on the road to recovery. As the fevers subside and he begins to get stronger, he is trying to work again in his Small Business Services and MYOB work. I admire him for his determination, but also for his appreciation of what he's got and his unflinching efforts to help himself.
Our efforts to date to raise funds for his treatment have been overwhelming and generous from the current donors. Now we need a further push out to larger networks for even small donations to hit the target, every dollar will help.
So far all funds raised are still short of covering the first hospital payment and airfares by approx. $1600.00. He will still have more hospital costs in the three & half months to come.
Please help David come home to an even start for both him and his family by sharing the Givealittle link on your Facebook pages asking for support.
Many thanks Lucy Hannah.
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David Cotton: Feeling Blessed
17 April 2016Dave Cotton
Having successfully negotiated a couple of nights outside of the hospital, I went in Friday for the Blin concentration step up dose. This can sometimes set off another Cytokine Release Syndrome. In my case in 2011, it caused a Grade 3 response enough to stop the treatment. (Grade 5 being death, which also happened to me after just three days last time, by cardiac arrest for 2 mins.) So they kept me under observation for approx 5 hours to ensure all was well. Was given the all clear to leave and am now settled in my room at a friends house in Wurzbug for my recovery period. smile emoticon
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Wohoo! - Latest update from David
14 April 2016Well its been a little quieter through Monday & Tuesday with fevers disappearing, So on Tuesday my doctor came in with the latest lab values and advised things were on the improve right across the board and I would likely be discharged on Wednesday. My first five days of Blin has been a flawless management of Cytokine Release Syndrome. A Medical Masterpiece, Thank you Prof. Max Topp & Dr Johannes Düll and all the team on Station M41 at the Universitätsklinikum Würzburg.
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David's Update - 3 days in to treatment
12 April 2016Dave Cotton: Another good fever Sunday 40.1 best yet... sweated out all night lying in another bed bath... this is the worst bit, lying in water all night unable sleep well or get dry. Changed my bed at 3am just to get through til 5am. Buuuuuuuuuuuuut.... it's F%#@IN working
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David's update - 2 days into treatment.
11 April 2016From David: Saturday another busy day of Fevers touching 39.9 degrees, more steroids to manage the Blin attack and intense leg pain both sides, needing a dose of morphine for my big night out. All settled now and woke Sunday in good shape.
Lucy's addition: David was looking pretty rocky there for a while with lots of high fevers and pain but things are starting to calm down. The doctors think its under control but it's still pretty hard to watch and be unable to help. He is definitely improving though - In the last 12 or so hours David is starting to talk about looking for a good cup of coffee in the hospital cafe. Leukaemia and coffee headache would be tooo much! Kia kaha David. As impressive as ever!
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David's treatment started - his message.
9 April 2016From David's keyboard in Germany: Hit the Blinatumomab at 1pm today, immune system went off with an explosion sending me up to 40 degrees. A long period of shivering, and now feeling wiped out. The perfect start.... on the way to destroying those troublesome B-Cells, :)
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David winging his way to Germany
5 April 2016David left for Germany this afternoon on 5th April - about 6 weeks after receiving his first worrying blood result. Sincere thanks to the medical team, friends and donors who helped get him on the road to Germany, and the Blin so quickly. His leukaemia load is around 60% of his bone marrow so time is of the essence.
David has been working hard to keep up with family, medical and work appointments prior to leaving. The last fortnight has been especially rough as a his leukemia fight has been compounded with a few days of chemotherapy. It has taken its toll in nausea and fatigue but now he's on the plane and the hope is that it is the beginning of the road to recovery.
If all goes according to plan, David will be receiving the Blin by Friday in Wurzburg and away for about 4 months. Thank goodness for medical breakthroughs, kind people, David's determination, email and international travel.
Please keep him and his family in your thoughts and continue to share his story and this page.
Sincere thanks.
Lucy
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