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

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

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 :)

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.