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)