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

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.