January update

10/1/12

Happy New Year folks!
Well December came and went and I didn't update you - you can take that as no news is good news! We all hope that you've had a great Christmas and New Year - we certainly did!

I'll update you on my health quickly - day 157 post transplant - woop woop! Everything is good (even the mindset!) - I had a review early December and then once again today.  Bloods are all clean and my counts are approaching normality - platelets being lowest which were at 140 (up from 130 in Dec) with the norm at 150.  So this is all very encouraging and a relief to us all. 

I do say to people "I'm in remission and long may it last" because that is where we are in terms of the impact this disease has on us all - unfortunately it's remission not cure - however it appears that successful treatment is moving more towards a potential for the 'c'.  So recently I have been lucky that to some degree I haven't even been thinking about the illness - this really helps the mindset.  In a couple of weeks I'm having my port removed (from my chest) - this is done under local and is something of a farewell to an old friend, which was dependable throughout all of the former treatments.

Mellon doings
Liz had a milestone birthday in November with a party with many friends.  She enjoyed it once we were at the party!

We've had a lovely trip to New Zealand, returning home on New Years Eve.  We toured through the North island on a pre-planned tour which showed us a lot of the top spots that must be seen. Relaxing, informative, beautiful and sometimes exciting.  I won't bore you all with the details but an idea is as follows:-
Bay of Islands - beautiful, swim with dolphins, very wet bike ride, drinkies!!

Auckland - the city and Segway tours.

Coromandel Peninsula - beautiful, dodgy Garmin navigation, great walks, changeable weather (well it was NZ!)

Waitomo - CAVING!! (yay!) - glow worms, blackwater rafting, fantastic streamway.

Rotorua - smelly hot springs, mud baths, geysers, cultural presentation and Hangi meal, Liz and Kyle rafting the Kaituna river and the highest commercially rafted waterfall in the world - 7m Tutea Falls.

Taupo - a short float plane ride, low oil pressure, another float plane another ride!!!! Nice accommodation, water out of the light fittings! another nice accommodation!!  Beautiful, big storm.

 

Huka Falls above

Napier - Christmas day - pressies, beautiful dinner - chilling & drinkies!

Wellington - the windy city, literally! Te Papa museum, catching up with long time friends Karen & Paul - brilliant and a lovely dinner with drinkies.  (the only photo is below courtesy of Karen - thanks mate - notice you avoided getting your piccie taken!)
                              
Christchurch - home from home with Lesley & Barry, catching up with Lesley's Mum and Dad - smashing people.  Great walks, sad city centre and surrounds, interesting container Mall, "old-time" chats.

1600 kilometres!  1000 miles in old money.

Hayley flew from NZ to Fiji with "the Girls" and had a great week sunning themselves and chilling.
Kyle is currently in Sydney competing tomorrow in a triathlon, he'd like to qualify for the world championships in England in September -watch out blighty!
Kathryn is in Arizona on training camp with the Cal U team.

Liz and I are on holiday next week also (chilling out!) and we are planning a USA trip in May for Kathryn's graduation.
Some piccies of New Zealand above - I'll update you in about 6 months so that I don't bore you all with more holiday chats!!

October update

Hi friends.
A short update for you all.  It's the 29th October and I've just started my 5th week back at work. It's been an interesting time, with a number of colleagues (and friends) leaving the company following a round of redundancies.  For me it has also meant a change of role, which will bring me some new challenges.  I've been working in my old role for the last few weeks and I'm just starting to pick up the new role this week - it'll keep me busy I'm sure.
Health wise all appears good.  I had a review with Tony on the 9th and he was happy with my bloods and how I felt.  Platelets were a little low compared to normal, however they were at a level that was to be expected.  I am feeling remarkably well, so I am extremely pleased with that.  I'm due to see Tony again early in December & I'll update again after that.
The main legacy that this illness has left with me is mostly mental.  Whenever there is an ache or pain there is a tendency to think the worst, especially if the symptom occurs at a lymph node location.  I've been told the first year is the worst for this!!!  To be fair, having read of the trials and tribulations of other patients, I think I have got off pretty lightly with only very slight chemo. side effects.
We are able to get out and about more now.  Liz and I visited Melbourne just over a week ago, a bit of tourism plus Liz did the round the bay 210km bike ride on the Sunday - well done to her.  We're sorting out a holiday to the north island of New Zealand later in the year. We chose to stay close since we didn't know how well I would be holding up.
Well I think that is all that I can tell you, we hope that you all stay fit and well and I'll update you in about 6 weeks.
ps Hairy has got a smattering of hair, very downy and just as grey!!

Alan

After the Stem cell transplant

Hi there,
I'm well. As you know I am now recovering after having had the stem cell transplant (SCT) (my own stem cells).

A few days after the transplant as expected my blood count went through the floor and I was seriously neutropenic - at high risk of infection.  Then it was for me to dodge infection until I was no longer neutropenic (Thursday 16th - day 9 post transplant).  Luckily I did very well and missed out on any infections!  The following day, Friday, they let me come home - with strict instructions to stay indoors.  I've been home now 12 days, initially I was a little under the weather but ok.  I was experiencing an upset stomach and nausea. However a chat with the support nurses led me to continue using the anti-nausea tablets regardless of 'apparent need' ie. even if feeling good.  This has kept me well and I am now feeling good in myself.  This treatment was certainly the hashest I have received, they told me that, but you tend to say to yourself "I did ok on the others!" - WRONG!!
Having left hospital the next steps are to again let my bloods recover to a 'normal' level, gain some fitness and muscle - I've lost 13 kilos in weight since November & based on BMI am not 'overweight' (Kyle disputes that!) Ha Ha.  I will also head back to work and hopefully a very long and healthy remission.  Of course, all this treatment has meant that my nice new hair has once again been flushed down the drain!! Ha Ha.

Our family are all well, thankfully.
Kathryn returned to Pittsburgh from London (Olympic city!!!) on 19th, it's her last year at California Uni. of Pennsylvania studying psychology.
Hayley is at Queensland University of Technology (QUT) studying primary education year 1. 
Kyle is in year 11, so the big year next year!! 
Liz is, as usual, very busy at work and we are trying to arrange a holiday, constrained somewhat by my weakened health and Kyles requirements for Triathlon training!!  We have been severely limited since November in that I've had to be in striking distance of hospitals in case of infection.
Anyway I'm hoping to be 'back to normal' blood count wise in the next few weeks or so.  I see Tony again in October, having seen him today.

Thanks for following the blog, it's been great to know that friends have 'got my back'.  I really think the blog has been a great vehicle to keep me sane and everyone informed, I know many have found it informative and even entertaining!!   Some haven't liked it for their own personal reasons, and I've been able to keep them separately informed.  So from now on Hairy's journey is to stay in remission and I'll just be updating after the 3 monthly reviews starting in mid October.  Hopefully there won't be much to say!

Thanks to you all for being there - below are some piccies of my wonderful support crew - the first photo was a professional photo taken before I lost my hair, and in those first hectic days of discovery!  The constant in this journey has been my beautiful wife Liz and of course the demon threesome.

 Kathryn - trying to parcel herself up for the journey to Australia

 Hayley in her element, volunteering at the nursery in South Africa

 Kyle showing off his (plastic) abs at school athletics carnival

PS I reckon I'll be getting back to some whitewater paddling by November - yippee!!
A fun video here!!  https://vimeo.com/33521087


Alan

Taking the Stem Cell transplant path.

Back in July, Hayley wrote about next steps - she said -

"The next few weeks will see Mum, Dad, Tony and possibly some other oncologists for further opinion to decide if a stem cell transplant will be completed. The transplant involves one more batch of chemotherapy to completely wipe the immune system, before injecting the previously harvested stem cells, to trick the bone marrow into forgetting the disease. The process takes around three weeks, of which most will be spent in hospital, due to the risk that comes with having no white blood cells! For now, no decision has been made, but much research and medical advice will determine what the next step will involve."

Well that period of time led to some tooing & froing between, home, the hospital, the internet and other resources in order to make a decision.  In between times I even found some time to go to work!!  (Work have been brilliant throughout all of this illness ).
Well the upshot was that we decided to proceed with the stem cell transplant.  Our view was that whilst the disease is down, give it another good kicking!! plus I've fared relatively well throughout the prior 8 rounds, so hit it whilst I am capable!!  Our readings also indicated that transplant now, may prolong remission. Of course however there is a risk to the transplant which must be considered!!

So the process is (started July 30th)
Week 1 - Into hospital on Tuesday, received chemo on every day that week from Wednesday.
Week 2 - A nasty nasty line was put into my neck (vascath), plus a big chemotherapy day on Monday.  Then I received the previously harvested stem cells (see Feb.) on the Tuesday.
Rest of week 2 cells to drop to zero.  Alan feels generally sickly but fares relatively well.
Cells are currently down at zero (August 12th) & will be down for around another 8 days - HIGH infection risk.  I have to watch any potential infection sites, like a small spot on my leg or any skin break.
Week 3 & 4 time to wait for cells to recover. Maintaining my platelet and red cell levels.

As soon as cells hit required level, I can go home to fully recover.

So that's where we, Team Mellon, are today.  Thanks for reading the blog again, take care and have fun.

Alan

One Big Fat Juicy R Word !

Remission. Rémission. Ремиссия. Remisión. 용서. Vergeving. Ri-mish-uhn. Ree-miss-hion. Remission.

The same word written so that everyone from the 10 different countries that visit this blog can understand. It’s meaning? Remission - the state of absence of disease activity in patients with a chronic illness, either temporary or permanent. Remission – the outcome of 8 long, gruelling months of chemotherapy. Remission – the fantastic news for my amazing Dad, Alan. The statistics say that this blog has had 7,968 views, a sign that we were never alone on this journey, so thanks to each and every one of you. Lets go back to just after the last blog post to bring you up to date.

As was mentioned in the previous post, Dad managed to get an infection followed by a virus, which landed him back in the emergency department for another week in hospital. He was allowed out once his bloods had been given the all clear and was told strictly to stay home until his blood count had risen even further. Unfortunately, even after following these precautions, he spiked another temperature and it was back to the emergency room again for he and Mum. He stayed in for two nights and was given the all clear after seeing the infection doctor. Since then there have been no more spontaneous visits to accident and emergency for Dad, woohoo!

June 25^th was the day scheduled for the PET scan, which would be a full body, colour scan of the body which would highlight any remaining cancerous cells and determine if remission had been achieved. The scan went ahead all fine and it was just the one week wait before seeing the oncologist to determine the outcome. The week passed gruellingly slow for dad, who wasn’t really sure what to expect. July 3^rd came around eventually, the big day and the appointment with Tony the oncologist. Mum had her positive thoughts flowing round the house and Dad tried to keep the appointment from his mind, to avoid going stir crazy!

After a couple of gruelling minutes while Tony observed the scan results and Mum tried to read his facial expressions he finally gave the verdict. Remission. As you can imagine, the relief was beyond belief for Dad, who felt like asking the assistant to weigh him again so she could see how much weight had been lifted from his shoulders! The appointment then followed with some heavy discussion as to where to head next. Currently, there is not enough research completed as to what the best move is to take to prolong the remission. The next few weeks will see Mum, Dad, Tony and possibly some other oncologists for further opinion to decide if a stem cell transplant will be completed. The transplant involves one more batch of chemotherapy to completely wipe the immune system, before injecting the previously harvested stem cells, to trick the bone marrow into forgetting the disease. The process takes around three weeks, of which most will be spent in hospital, due to the risk that comes with having no white blood cells! For now, no decision has been made, but much research and medical advice will determine what the next step will involve. For today though, a celebratory lunch, Guinness and cake for a well deserving man!

I personally would like to thank everyone for the amazing support we have received so far and I am sure the continued support through the future. To everyone from St. Martins school who have cooked up some delicious dinners when we were struggling for time, thank you so very much, both myself and my stomach are so very thankful! J To everyone else who have helped out in so many ways, we really do thank you! We could not have coped how well we did without your thoughtfulness and caring wishes! And of course, thank you to each and every nurse, doctor and staff member at Greenslopes, particularly Tony, for helping to save my Dads life. You rock.

These thank you messages are not the end, just long overdue on my behalf, so thank you! I’m sure Dad will do his own update for this blog, since I am stealing his thunder on the best blog post yet to reach you!

Lots of love,

Hayley! 

Round 8 - that's the lot isn't it?

Well I'm at home today on day 23 of a normal 21 day cycle, I've been a bit lax on writing but there have been reasons. So let's go back to Day 1, 22nd May, sounds like a long time ago. 

The day started with a visit to see Tony whom I hadn't seen for quite a while.  You may recall I was waiting to find out "what next" well the meeting was very useful and has given me that direction and focus, which has relieved some of the mental stress I was putting myself under!!  The immediate plan was to get through round 8, have a good break, cos there's no more chemo, then late June a PET scan, which Tony will review on 3rd July at our next meeting. 
Whether we proceed to stem cell transplant or not will depend on the outcome of the review.  Interestingly there is little documented evidence to say that doing the stem cell transplant increases the length of remission if actioned immediately, hence there is a view that you could be using 2 arrows from our small quiver of arrows for one remission, or you can save the stem cell for a potential second remission.  It's all very confusing and an area which you have to leave up to the experts.  We are positioned well with a good stem cell harvest in the bank.

After my meet with Tony it was off to day oncology for the first chemo - Rituximab / Mabthera - which appears to be one of the wonder drugs in treating Lymphoma's as well as other cancers. Remission rates appear to have increased since the addition of this drug to the protocol, now making it R-HyperCVAD.  Following the Rituximab the main B cycle Hyper CVAD drugs started, I'm given methotrexate continuously for 24 hours, and this is repeated on the next day. Then Cytarabine is given twice (12 hourly) on the second day and also on the third day. This all pans out as complete for me on the Friday morning due to the late start on Tuesday.  If you read the protocol for the treatment it says that you can go home at this point if your methotrexate levels are ok. 

Well to be honest on the Thursday and Friday you are lying on the bed doing nothing, eating probably breakfast only and even thinking about food can be nauseating.  I've found the B cycle mucks around with my body temperature which it did again on this occasion, however as soon as you hit 38deg alarm bells ring and testing begins for infections.  Well the testing here included Dr. Whitby the infectious disease specialist. After a couple of days on antibiotics, he stopped the antibiotics and gave me a couple of tablets and said that if my temp didn't spike in the next 24 hours, it would not be a bacterial infection & would be chemo. related - which of course was the outcome.  So I escaped from Ward 31 on Sunday and came home.

The following week was quiet initially, I got a blood test on the Monday and went in for platelets on Tuesday at which point I was neutropenic, which was relatively early in the cycle (day 8).  All was well til Thursday afternoon when I got a temperature measured at home at 38.4deg.  This meant a trip to the Emergency department again where the home thermometer's accuracy was shown up, 39.4 in hospital 38.7 on the home machine - better remember that for the future.  This time I had an infection and received X-rays and antibiotics in the ED.  I spent the night in the ED, not the most comfortable of nights but ok, there were literally no other beds available in the hospital.  The next day I got up to ward 31 just after 11am and was hooked up to constant saline and periodic antibiotics, with blood cultures being taken to find out exactly which infection I had.  This takes a couple of days and resulted in modified antibiotics for a few days.  So by Monday the infection was under control and then I spiked another temperature!  This time due to some form of virus - great!! More swabs and so forth, although no real change to any treatments - the best result for the virus was for my blood counts to recover!  Finally bloods recovered on Thursday 7th June with neutrophils triggering the magic 1.0 target at a fantastic 1.46 yippee just some platelets to receive and then hopefully home!  Of course there is always a sting in the tail - yep you guessed it I reacted to the platelets.  Luckily they let me home last Thursday and I was under strict instructions from Liz to relax at home for a few days and keep myself to myself - yes dear!!

So next update will be after the PET scan and meeting with Tony.  Thanks for following the blog and thinking of us all.

Alan, Liz, K,H,K

Round 7 - quick update. Need eyebrows - use Nacho sauce.

Woohoo round 7 chemo is complete, I'm now in recovery stage waiting for blood counts to do their thing.  Chemo started Tuesday 1st May with the usual cycle of loads of fluids making me put on 6kgs of weight over about 4 days, allied to this is lack of sleep due to the steroids and the need to lose weight!  I usually have 2 down days where I don't turn on the TV, eat, read or do anything - a lady I met in the hospital said that on the Thursday I looked "dreadful".  Most would say I look like that most of the time! 

I was let out on the Saturday, relaxed at home on Sunday and due to a public holiday Monday was a little bit more active - some would say too active!  I'll explain.  Liz and I went for a walk on the local walking paths alongside the creek, we walked  about 3.5kms which wasn't too bad since I was just out of hospital.  Then a cool LL&B before heading home. An hour or so later we tripped back to the cinema with Kyle in tow, to see the 'Avengers' movie, followed by dinner at Hog's Breath Cafe.  I chose nachos - my appetite was just getting back to normal.  Anyway I enjoyed my meal, unable to eat it all but what can you expect.  So we are sitting in the restaurant chatting & I felt hot, partly due to the spicy nachos and the reasonably warm restaurant.  Next thing Liz is clutching my shoulders saying "Alan, Alan are you ok?"  Well 30 seconds later I was ok and you guessed it I'd passed out into my nachos.  Poor Liz was sitting opposite and looked up to find me slumped into the food, she had to revive me & wipe off the remnants of dinner - hence the reference to Nacho eyebrows!!  So I'd definitely overdone it a bit that afternoon.  After 10 minutes I was well enough to walk home and we've had a few post-event laughs over this and nachos seems to be the joke topic of the moment.  As a penance I put my Facebook profile picture as a bowl of nachos,  thankfully Kyle was a bit slow off the mark and there is no photo evidence of my misfortune.  Mmmmmm (below!)

Last Friday 11th, I was back in day oncology to receive a very short chemo treatment and was neutropenic.  Thankfully I was able to convince them that to avoid infection I'm better off at home and was not admitted into a boring hospital room with hospital food!  I had to pop back Saturday morning (yesterday) for more platelets, which thankfully was a non event. 

So, now I just have to let my blood counts recover and head back on the 22nd to see Tony and hopefully start round 8 which in theory is the last chemo.  At the same time I'll be asking Tony where we go after round 8, ie. testing, defining whether I am in remission and so on.  This will of course be the start of a new direction in my journey - so please think of me, pray if you wish and hopefully I'll be back to normal blood counts over the next few months, with work, life, and so on.

Alan