Schedule 2 or is it cycle 2? Second Chemo and Christmas.

Hi folks, update time, I hope you are sitting comfortably.

I've just finished the second schedule of chemo and was fortunate enough to be allowed out of hospital on Christmas Eve.  Now, is this the second schedule / round or the second cycle?  Well I'm going to call it schedule B, of Cycle 1.  I will be receiving four cycles of this treatment.

What on earth are you on about I hear you saying!!  Let me clarify, the Hyper-CVAD consists of two schedules (or rounds) of chemo per Cycle of Hyper-CVAD.  Schedules A & B are totally different regimens,  doing different parts of the required task to rid me of Lymphoma.  So my first Chemo was Schedule A, and I have just completed Schedule B, thus apart from the rest / recovery phase, Cycle 1 is now complete.

This site is a good explanation for those who like to know what the in's and out's are for Hyper-CVAD!  You don't need to read this to follow the blog - so do not feel obliged! and remember what I have said about internet resources!!!
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/Hyper-CVAD.aspx

I started off in the day Oncology unit last Tuesday 20th.  I received the first treatment there which was not part of H-C, but is the additional treatment Rituximab (Mabthera®).
This drug can give patients the shakes & bad reactions on the first occasion taken, hence the visit to day Oncology where you basically have a one-to-one Nurse / Patient relationship whilst receiving this therapy.  Following this I moved up to the ward and 3 days of H-C.

The treatment themselves were fine, the main issues are lack of sleep, due to regular toilet visits, some nausea which is sorted by the Nursing staff and some 'shakes'.  Anyway Christmas Eve came along & they let me home for the holiday period.  I don't think the bottle of Shiraz influenced Tony's decision at all.
Christmas day was at home - actually our first Christmas ever in our own home in Australia.  A lovely relaxing day, with our traditional Salmon and eggs brekky, followed by a great lunch out on the deck.

The observant amongst you will note that due to a dearth of hair, my hat fits!!!! and Kyle is wearing a Pittsburgh Steelers shirt!!!

The rest of the holiday period was spent relaxing, eating Turkey and ham, and just being around with the family.
Today is 28th December - I'm typing this in the day Oncology unit.  I've come in for a blood count and to see how Hairy is holding up.  The outcome of this is that I am Neutropenic ie. my blood count is very low - Neutrophil's 0.11 (should be >1.5 to be out and about), Whitecount generally low, Platelets are low and I have a significant rash.  I actually had the rash on Christmas eve and was allowed home, for me practically the rash is not an issue to live with.  However with the Neutropenia (risk of infection) and that it has spread over my body, there is some element of concern.
Because of this I'm going to be admitted for a few days.  Better safe than sorry.

In a few days hopefully my blood count will have recovered a bit & they will let me out in time for my birthday (albeit at home) on 31st.  Before that, we have Kathryn's 21st on the 29th.  Our little baby is all grown up!!! (sorry for that KT!)

Have a great holiday period for those still off work, and have a relaxing few days for those who have to earn a crust!!
Catch you all later.

Alan

Hairless Mel.

Good Evening One and All.

Over the past week and a half in the Mellon household it has been really quite easy to forget that Dad is sick. Apart from the fact that he doesn't go to work everyday, nothing else has really changed. He eats normal meals, is awake normal hours, looks normal, oh and still manages to boss us all around like normal! I personally had really quite nearly forgotten that we are currently supposed to be in New York City and that Dad does have cancer. Which was quite a nice feeling, until of course I remembered.

The wake up call, or the reminder, was not so nice. There I was sitting on the couch, probably eating, knowing me, when Dad comes down and says "So did your Mum tell you what happened in the shower today." Feeling utterly worried by what on earth was going to follow this sentence, I let him know that I really wasn't quite sure what he was getting at. He then explained that he had been running his hand through his luscious locks when a clump had ended up in his hand. My heart sunk. Yes it is true, he will be bald & then everyone will know and stare. Yippee...

From then on days passed, the shower hole had to be unclogged many times and Dads pillow became rather hairy. Sunday came around and his head was patchy and the remainder of his now thin hair looked dead and greasy.  Holding out for the return of Kathryn, so she could come home to Dad and not a cancer patient, luckily Monday was not far away. Kathryn is now home and shortly after her arrival we were all out out in the garden to get rid of what was left.

Most of the hair came out really easily, just by brushing it, but then Kathryn and Mum had a bit of fun with the scissors and the razor getting off the last of the straggly bits. I've put together a video of his transformation as he was adamant about you all seeing it. Make sure you listen with the sound on!

Now for a bit of advertising!

Thanks to Mark from Expedition Kayaks for the bandanas!

Unfortunately we had planned to have a Christmas lunch tomorrow, Tuesday, as Dad will be in hospital for the real Christmas day. But due to our sheer bad luck we seem to be having, the hospital rang and will be admitting him early tomorrow morning due to staff numbers. We now stare wonderingly at the leg of ham and turkey that we bought, wondering if we will ever get our christmas dinner!

Apart from the losing the hair Dad is still doing very well. I'm sure he will update you soon after this next batch of chemo, starting tomorrow is over.

We hope you all have a very Merry Christmas and a Happy and safe New Years.

All my love,

Hayley & the Mellons. xxx

Arise oh mighty Neutrophil's & doing a little bit of good!

A quick update for all on my health etc.

As I have said, I have been feeling decidedly well, which is a bonus. Last Friday was day 10 with blood count generally at a low at that point.  I had a blood test yesterday which indicates that I am well above the minimum and so able to start socialising again - ie. I am at lower risk of infection. This has picked up quickly due to the injection I had last week & will now generally trend slowly back to normal levels.
Having seen Tony today he is happy with progress and round two will start next Wednesday, 21st Dec - just in time for Xmas!!!

As many of you will be aware we were due to be in the USA at the moment, obviously this got cancelled. Well most of it. We had a booking at a resort in Pennsylvania, close to some skiing. This was booked using our Interval international points and was not capable of cancellation.  Now I hate waste and so when I could not find cousins etc that could use the booking, I approached a small charity close to the resort - www.aimeesarmy.com
Annette runs this charity to support families of children with various childhood cancers.  Aimee is Annettes daughter who unfortunately passed away a few years ago from an incurable tumour.

Annette has put me in touch with a family who as it happens was looking to book some time at the very same resort.   The family in question have a 3 year old boy who is battling grade lll anaplastic ependymoma (brain cancer). Also, His Birthday is December 21st!!!

So Liz and I are very happy to be able to transfer this booking to someone else to utilise and for it to be such a worthy cause and with such perfect timing with it being his birthday.
It's gratifying when a little bit of googling and a few e-mails can just bring a smile and a charming comment of
"Wow!! I am so floored, unimaginably grateful, and beyond excited for the last min for this opportunity"

For those of the praying persuasion - please keep Zachary from Pennsylvania in your prayers.

Alan

The end of week one

Well folks, week one is complete, I am home and I am surprisingly well.
The treatment last week was disrupting in a number of ways, firstly there was the Chemo being injected into my veins. Ok, a necessary evil, I can live with that (I need to live with that!). 
The big doses of steroids threw out my sleep patterns, so that at one point I'd had 7 hours sleep in 48 - reminds me of my youth! 
The two plus litres of IV at a time plus all the water required, resulted in trips to the bathroom at 45 minute intervals & a buzz to the nurse who had to gown up and test it for alkalinity and blood (no wonder I couldn't sleep).
Of course the medications bung you up so you have to have other medication to reverse that, with their own side effects, but clearing the Chemo out of the system was paramount.

So by Sunday, day 5, whilst I was tired, I did not feel particularly unwell - similar to the first week after a flu bout - run down, lethargic (no comments!!). On Monday, Tony the oncologist said I looked "well" and "young and fit" (leaving Liz choking on her coffee! - she thought I looked rough!) so I could go home Tuesday - and here I am.

What happens next?
The next stage is that my blood count (white platelets and neutrophils) and so forth will drop. I will become "Neutropenic".  This is where my body will be at risk because it will not be able to fight off infections.  It is expected that my count will hit bottom on about day 10 (this Friday), however I did receive a small injection costing about $1,000 which hopefully will accelerate the pick up of those counts and get us striding forward again.  So for the rest of this week I am keeping to myself, avoiding as much contact as is possible to minimise risk of infection. 

I can honestly say that I am lucky in having only had minimal reactions to the rejime (so far!), when in hospital there are numerous less fortunate patients who will, I am sure, be struggling to hold everything together.  I'm grateful for that small mercy.

Next week I have blood tests and an out patient visit with Tony, then it is recovery until round 2 commences on 21st December - perfectly timed for Christmas you note!!

I'll write a bit more about the later phases in a week or so.

The drug regime

So what's the drug regime like??
A word of warning coming from experience. The web is a wonderful place, however sometimes it is wrong or out of date. We, as you can imagine, have been reading up on my illness and have encountered these issues a number of times. I'm writing this blog with enough information and interest to keep you informed. I talk to the oncologist every day, he's been doing this for more than 15 years and from that I make a precis for you guys. If you do research this stuff, please only use it for your own use.

Well bearing in mind I'm someone who hates the 1 daily tablet I take for cholesterol - all of 10mg, and one who thinks twice about the Nurofen tablet once every 3 months, here is a days input.

Injections and infusions go in via my double portacath - which in themselves have two entry points, so I am wired for sound!
Tablets            to keep my ph levels alkaline                        2 tabs every 4 hours + bonuses!
Tablets            Steroids (for London 2012 100m sprint?)    10 tabs / day all together
Infusion          drug to protect lining of the bladder             18 hour slow infusion daily
Injection         drug to stop nausea (hopefully)                     about 25ml
Tablets            antibiotic to keep bugs at bay                       1 or 2 a day
Tablets            anti-fungal to keep other bugs at bay           1 or 2 a day
Drink              stuff for regularity!                                        125ml a day

On top of that is the chemo!
Hyper-CVAD is named after the initials of the chemotherapy drugs used or their trade name
Hyper means that more than one treatment (or dose) of the same drug is given in a day
The treatment is usually given over five days with generally one infused drug each day but two or more doses.
Day one (two and three) was Cyclophosphamide (a colourless fluid) given as an infusion over three hours.
to follow are (today is day 4 of 5)
Vincristine (a colourless fluid) and doxorubicin (a red fluid) are given as infusions.
Dexamethasone (a steroid) is given as tablets - this is the steroid above given daily at the moment
Methotrexate (a yellow fluid) is given as an infusion over 24 hours.
Cytarabine (a colourless fluid) is given as an infusion that lasts two hours.

So no adverse reactions to date. Still my same old self, just permanently attached to Baxter!!
Hairloss expected in about 3 weeks for all of the follicly challenged who are jealous of my luscious lowlighted locks!!

Hairy Mel (a misnomer if ever I heard one!)

Shake rattle & pill

I've modified the blog to include the Lymphoma green, I hope you like it. (You can see I have time on my hands!!)

Well day one is over - all 26.75 hours - chemo finished at 2:45am today!!  Thanks to H & K for their prior post - most entertaining and informative.

I thought I'd write a little about the first day that has been...
Hospital starts are early (for me) - 5:15 for obs (pulse, BP, temp, wallet) 5:30 Weight
Between then and 7:45, I was able to doze and only get woken for drug intake on two occasions.
Strangely at 7:40 I did think to myself  "I should be driving to work now....." None of that for a while.
Tony the doctor visits any time after 7:30, and we have chats about wetsuits, wetsuit glue (you can't get the old black glue easily anymore) oh and about me and the treatments.
After that the nurses plug me in, make me drink lots, test my wee, and do regular obs during the day. Within reason I can go for a stroll around the building, but I am attached to Baxter, who has a 5 wheel trolley which does not travel well over the raised bumps near crossings and some surfaces at all.  After that it's day time tv with adverts for buy now funeral plans! and repeats, I have some DVD's, books and keeping you guys informed.

Here is Dan testing my wee - note he really does have to wear the Daffy duck suit!! 

I reckon he's been watching too many Bear Grylls shows.

Alan



(Ok before the flood of comments - it's not really wee, because that would not be safety conscious - fun piccie though, thanks for the idea Dan)

Seconds out, Round one!

Ladies and Gentleman if you can please take your seats, the
least-anticipated fight of the year has just begun. In the red corner we have
Larry the lumpy lymphoma. In the lime-green corner we have Baxter & Alan –
the tag team. The crowd goes wild when they see Baxter & Alan, its obvious
who the favourites are in this battle! Ding ding ding!! The battle has begun. There
is not much movement from Larry; he’s already delivered one big fat blow to the
head in the last battle. Now he’s out of moves, but the tag team has stepped up
to the machine. Baxter is feeding into Alan trying to get Larry to forfeit his
fight against him. Only time will tell to see who will come out on top.

Did you catch all of that? I would assume a bit of explaining is in
order, unless you’ve visited Greenslopes in the last 24 hours! First off, why
lime green? In Australia the lime green ribbon is the colour for Lymphoma, naturally the colour suits us well.
Secondly, we’d like to introduce to you Baxter. We haven’t quite worked
out if Baxter is our friend or not. Baxter is the machine feeding the chemo
into Dads body – friend or foe? In the near future we think foe, but at the end
of the day, he is just trying to be our friend! :)

Baxter

FINALLY FOR SOME NEWS! Thank you for following the blog thus far, the
update you have been waiting for has finally arrived. There are two main grades
of Lymphoma – high grade and low grade. Due to true Mellon form – we don’t
follow the crowd, so naturally, Dad has middle grade Lymphoma. With the low
grade cancer the chemo treatment would have been more of a social time for Dad,
coming into hospital for the day, getting the chemo and being discharged at
night.
Unfortunately with the mid range the chemo is slightly more vigorous,
meaning that the chemo will be being fed in over a number of days. The repercussion
of the chemo is that dad’s immune system will be almost abolished. So for at
least the next couple of weeks 31-14 will be his new home. He will be closely monitored
to ensure that he will not be picking up any diseases or infections etc.

Delightful Donna in her Daffy Duck outfit with the first Chemo and Lei Lei to her right.

The hardest part of it all of course is that if Dad is to come home our
house will have to be spotless – the hardest challenge we have faced yet! (Just
kidding Mum) Thanks for all your support so far, I’m sure you will be hearing
from us soon!
Hayley & Kyle :)

Freeze frame.........

Well it's been a little while since I've written. My chum Hayley has done an excellent job of keeping you all up to date. 

It's Sunday here in Bris Vegas, breakfast is cooking. The update is really about  the last few days and the goings on.  I had the 4th biopsy on Wednesday evening, which has been the largest, being the removal of a lymph node in surgery.  I was fortunate in that once Dr Tony Blackwell, my oncologist, found that the earlier biopsy would not give him the results he needed, he immediately arranged for me to undergo the surgery. This was with Dr O'Connor, a respected surgeon, before he disappeared for a couple of weeks.

That night I slept well with no pain at all, thankfully, apart from the discomfort from the double 'port-a-cath' in my left shoulder.  After that night in hospital I was discharged into Hayleys care!  So what next?  Tony expects to have the biopsy results on Monday, but has asked to see me on Tuesday.  It is likely that I will then undergo chemo shortly after that. 

Liz and I are avidly reading lots of literature all about managing this illness,  and beneficial compementary actions that we can adopt.  We'll let you know more once we know more!!

Your support and well wishes have been fantastic - thanks.

Techy tale - to post a comment you must be registered with google.UPDATE settings changed anyone can post -  I have registered my non google (aol) email as a google account, so I don't need another email address. When you post successfully it tells you so.  I'm moderating comments each day - so if you see nothing, it may have gone wrong!  Commenting is really strange because it keeps telling me I can't comment on my own blog - stick with it, and if all else fails e-mail me.  I'll try and chat to a blogger friend and find out more on this irritating subject!!

Alan

Its photo time!

Just incase up until now you haven't been 100% convinced we are telling the truth (although that would be quite a sick, horrid joke) here is some photo evidence!

Just an update - the doctors still haven't been able to completely diagnose dads entire condition, the biopsy that we were waiting on for results, unfortunately did not deliver what the doctor needed. As I type this Dad is in surgery (or nearly anyway) having a lymphnode removed for more extensive testing, before he can come home tomorrow. HOORAY!

Only to go back in on Monday for the first day of chemo. waah.

Enjoy the photos - gotta have a bit of a giggle when you can :P just kidding Dad!

Dad looking sexy with his two new tubes put in yesterday - these are where the drugs, chemo and everything else they are pumping in his body will enter.

Note - flaunting his fake tan gone wrong! Obviously needs a lesson from me... :P

All taped up across the chest and the arm so he can have a shower! Hopefully get rid of some of that pink!

While the cats away, the mice will play... Hopefully this isn't a sight we will be seeing any time soon!

Keep you updated soon!

Hayley :) xxx

Checking in at Greenslopes!

As many of you know, a sense of direction has never been one of my mother’s strong points. So when dad text the two of us with just the simple words “I’m in 23-6” the dreaded thought of trying to navigate our way through the hospital overcame me. None-the-less we managed to traipse through long corridors and up and down elevators before arriving at ward 23; bed 6.

At first I was sure that our lack of directional skills had landed us in the wrong place. We weren’t in the oncology ward and the patients I could see in the room, looked rather… well old to tell the truth. But there he was, hanging out on bed 6, headphones in and eyes fixed to the TV screen. I was a little shocked to see his chest stained pink with two tubes poking out and another on his hand. Then again the past two weeks have been filled with a lot of shock, so the feeling passed as soon as he opened his mouth and started blabbing away like his normal self.

Over the next hour of chatting we discovered, well nothing. Dad seemed to have no real idea what was going on & apparently neither did his surgeon when they debated exactly what line they were putting into his body before the morning op. Tomorrow Dad’s oncologist will check up on him in the morning and hopefully shed some much needed light on exactly how long until he can come home, what type of lymphoma he has and what the treatment will be.

Hopefully there will also be a spare bed on the oncology ward for him so he can move out of what mum and I have renamed the “dementia ward” after hearing one of dads roomies ask what day it was three times in a short space! We also got a bit of a laugh when I played dead in the bed while dad went to pee in a jar.

After a couple of hours of causing mayhem we finally decided it was time to find our way out of the maze. Day one – over! Time for some sleep so we can wake up and do it all over again tomorrow!

Loveeee!

Hayley :) xx

Road to success?

Well I've been sitting here at the computer, chatting to Kathryn on Skype in the USA. Then I looked at November on the calendar. So far November has not been too good, 8th was the date of diagnosis! So this is what the calendar said..... (I hope it is prophetic)

Testing Testing Testing

So last week was all about establishing exactly which Lymphoma I have.  At the moment I still don't have this information, however my oncologist should now have this and it will drive his plan for my treatment in the coming weeks and months.

I was admitted to hospital on Tuesday evening to be ready for a bone marrow biopsy on the Wednesday morning. Well, those who have spent a night in hospital will know the disturbances you get, however the nil by mouth thing and the very dry atmosphere was dreadful. By the time of the biopsy my mouth was as dry as a scottish bar after hogmanay!!  The biopsy was interesting, as the anaesthetist pushed the sleep juice into my arm the nice lady doctor started pulling down my underwear!! Well would you believe it, next thing I knew I woke in a different room 10 minutes later!

The following day after an echocardiogram to check out my heart (to make sure I was up to the chemo to come - this was the hour of chest rubbing!) I was discharged to return the following day for a PET scan.

A PET scan is like a colour CT scan, you must starve prior, then are injected with a sugar solution containing a radioactive material.  The scan gives multiple images of your body. Areas where the particular injected 'radiopharmaceutical' accumulates (for example, fast-growing cancer cells) appear ‘brighter’ than normal tissues on the images.  The worst part of this was that you must lie with your arms above your head for 10 minutes!  Now I'd done a CT scan no problem, however this time my arms ached almost immediately and I really had to focus to keep still and deliver the required images. Anyway what is 10 minutes in a lifetime!!  After the scan my upper arms were pumped like Arnies - very interesting!

Final test was another biopsy to gather more details for the Oncologist (I learnt this term from 'House'!).  Thankfully they chose to biopsy my groin (1 hour recovery) rather than my chest (4-5 hour recovery) although the next thing I knew was a $700 charge!! Something else to sort next week.

At this point you should understand that it is not cheap being ill!!

Well next week I'm into hospital to start the journey proper and will get the update on which Lymphoma I actually have.  This will set the tone for the next few weeks. So call in next week for an update.

Moving on - the first week

Well would you believe it! it is only just over a week since I was told "it's lymphoma, can you come into the hospital today"
You would not believe how much has happened in that time both physically and mentally.

My first hurdle was of course having to tell my immediate family - Liz briefly thought I was joking - which surprised me because I kid about many things but I do think I know when to draw the line!

Hayley 18, our youngest daughter, misunderstood what her Mum told her (I was in hospital at the time) and when told again obviously got upset.  Kyle 15, well he set out to chat with a friend - he chose well, his triathlon coach Jamie who gave him some great advice which was later echoed by Warwick the club senior coach. Thanks to Jamie and Warwick. 

Then it was touching base with Kathryn 20. She is currently at Uni. 30mins south of Pittsburgh with a busy school / training / social life!  We got to skype with her at the weekend. Being a super hero - I got Liz to tell her.  To be honest this was the best thing I could have done. The only time I have been emotional over this illness was when thinking of her being such a long way from home. In an email to work colleagues I said that "I wish my arms were 15,000 miles long to reach out to her".  Liz did a brilliant job - calmly telling her everything that we knew, that I am physiscally well (!) and etc.  Liz struggled but did not shed a tear - well done Liz as usual you're my hero.  Once the dirty deed was done I joined the conversation and we agreed certain things most importantly that Ruggles (Kathryns teddy bear) would cuddle her each day on my behalf.

So last week was busy, two nights in hospital undergoing tests, Liz's birthday on Thursday, my sister Pat came up from Iluka, about 3 hours away, to make sure I wasn't fibbing to her about the state of my health.  I'll write some more about the tests later.......

This was the photo that the four of us had framed up for Liz's birthday last week.

The start of a journey....

Hi friends and family, thanks for following the link to my new blog.

Is starts a bit like an alcoholics anonymous session
"Hi I'm <insert name> and I'm an alcoholic"
Well I'm not (an alcoholic) but my line is
"Hi I'm Alan Mellon and I have been diagnosed with Lymphoma"

Slight pause for you to gather your breath..........

Yep - I'm afraid so - early days at the moment, lots of testing and lots of questions.
So the actual type of Lymphoma is awaiting discovery and with it the type of treatment I require.
I'll know better about this in the week commencing 21st November.

Over the last few weeks I have been scanned, prodded, poked, had an attractive young lady rub my chest for an hour and have seen the inside of a hospital for myself for the first time in my life.  Ho hum..

If you know me and would like to leave remarks - feel free (I've turned moderation on for now - so be patient), I know most people will be wishing me well in my journey so thanks for that.

I'll update this a little bit more over the weekend and I've invited some Ghost writers to help me for when I'm undergoing treatment and not necessarily feeling 'up to it'

Catch you later - Alan