Bashful, Doc, Dopey, Happy, Sleepy, Sneezy - the 6 platelets and with Grumpy Hairy Mel we have seven!

Well this week I was supposed to start Chemo 7, however as I suspected my platelet count was low.  The count was actually 6 - so I've named them after the dwarves, with Hairy Mel taking on the role of Grumpy because he'd like to get on with the chemo!

To start the chemo I need to have a platelet count of 100, so I was only 94 short. Below are my counts from Monday and the 'normal ranges' (I'm often below these but it gives you an indication of what is happening in my body).
16/4/12
Haemoglobin         83    Low          (135 - 175)
White Cell count     2.00Low          (3.5 - 10.0)
Neutrophils             1.39Low          (1.5 - 6.5  -  less than 1.0 indicates neutropenia)
Platelets                  6     Low          (150 - 400  -  100 required to start chemo.)

Following my consult with Tony, I received 2 units of blood and 2 units of platelets on Tuesday,  about 7 hours of sitting in the big green chair in day oncology.  I saw Tony again today & platelets are up to mid 50's - promising.  However haemoglobin is still low so back into day oncology tomorrow for 2 units of blood (about 4 hours). 

Chemo is delayed by two weeks with round 7 starting on Tuesday 1st May.  Tony is going on holiday and you know what, I can't really blame him!!

I'll update when something happens.
Have fun out there everyone.

Grumpy (platelet)

Chemo 6 - apologies for the delays in updating

Hi folks,It's been just over a month since my last update & that was pretty brief! I've noticed a few of you asking whether I'm still out here & surviving - well the short answer is yes.  Originally Hayley was going to write this update to give some variation and her own personal style, however Uni. assignments and a workplace that thinks she is always available has meant this is not going to happen.

At last update I was at home on day 6 of Chemo 5, today is day 19 of Chemo 6 each round being 21 days.  Well that Chemo 5, an A cycle, went pretty well with us being able to find time for a few days away during my "Up" time and to celebrate Kyles 16th birthday. We went north to the "Sunshine coast" to watch Kyle in the triathlon Australian Youth Championships where he came 8th. He performed really well and was happy with how the race had gone.  On the first day it hammered down with rain (liquid sunshine?),  making watching the event damp! In the afternoon we ended staying in our apartment watching the rain & reading / web surfing / tv watching.  Strangely this was good because it was somewhere different & there were no chores etc to complete.
Below is a picture of the weather & lake from our balcony and of Kyle in the event.  In Mooloolaba there was localised flooding with kids having to be evacuated from their day centre & water rushing through peoples garages and homes!!

We spent the rest of the time away watching the various triathlons in Mooloolaba - the World Cup races and the olympic distance Mooloolaba triathlon - where club members competed for themselves - similar to the marathon type events we see worldwide but in triathlon.

After this it was back to hospital for Chemo 6, B cycle - the not so friendly cycle.  I started this round on 27th March.  As usual I get loaded with fluids & the chemo cycle.  Hospital food whilst ok, becomes unpalatable during the treatment, with, at one stage, even the mention of food making you vomit.  I tend to get to day 4/5 and choose to not eat for a couple of days, being just capable of eating a weet(a)bix breakfast  (luckily I have sufficient energy stores (fat) in my body to be able to do this).  In fact day 4 is a complete waste of time, I doze, lie on the bed, don't read, don't watch TV, don't do anything - apart from have to pee every 45 minutes to 1 hour!!  Liz did say "you looked worse than you think you did" - so obviously I felt 'ok', but was actually pretty rough. 

To sum up the hospital phase of Chemo 6/B, I don't think it hit me as badly as the previous B cycles, I had two down days and then felt good!  The Doc. chose to keep me in over the weekend, due to a raised temperature and potential of infection - days 5 & 6.  I did however get to escape on the Sunday afternoon for a few hours, where I met my cousin Julia who was up from Ballarat in Victoria and later friends Dawn, Ben & Harry who were over from Perth (for Ben who was competing in the Surf Lifesaving Nationals - known as "the Aussies").

  A couple of piccies with Julia at the "City beach" - I thoroughly enjoyed that afternoon, the company & escape to a warm Brissie afternoon away from hospital aircon, was great. You'll note I still have my red hospital admission band on my right wrist!  The following day I was weighed in hospital, I'd lost a kilo in a day.  However I kept telling the nurses that I'd eaten fish n chips, strawberries, cream and ice cream, plus chocolate AND lost weight - they didn't talk to me for a while!!!

I had to be back into hospital that evening (Sunday) and was released the following evening after receiving blood and platelets - to support my system.  The following Saturday (Easter Saturday) I was back in for a few hours for routine blood tests and some further platelets.  After this I kept myself to myself til the Tuesday after Easter because I was neutropenic and didn't have a white cell to my name!  However all that changed on late Tuesday afternoon with the arrival of Pat, Sarah, Abbie,  Lochie and Hope. They visited for a couple of days keeping us entertained and made good use of the pool (some even in their pyjamas).

Since then I've been out a bit but taking it easy, the B cycle does mean that my blood counts really drop hence being cautious and avoiding infection risk (check out the red line on the chart in an earlier post).  Today Saturday 14th April - day 19, I'm due to see Tony the oncologist on Tuesday and start chemo 7, same day.  I'm not sure whether my platelets will be high enough however.  I say this because (you learn!) the chemo makes me itchy - I presume associated with the rash - as I scratch my itch  (!!) I get bruises, this is an indication of a low platelet count and Tony will require my platelet count to be around 100 to start chemo.  (My count on Easter Saturday was around 30, so if it dipped further after then, it has further to recover!)

A quick update on the Mellon family - just to prove that life goes on!  Liz, Hayley and Kyle have been on Easter school break, so they start back on Monday, it will be business as usual from then on!  Kathryn is still at Uni. in the USA, she recently broke the school pool record for the 1650 yard freestyle event, plus other positive achievements  - so she is happy. 

I start round 7 potentially on Tuesday so can definitely see light at the end of the tunnel. I'm 3/4 of the way through now with just one of each cycle to go - yippee.  Of course after that I'm expecting testing and hopefully the R word (remission) - fingers crossed on that one please, prayers, thoughts / anything will be welcome!! This will be from late May so we will have to see how we go!

To all reading this, keep well, thanks for thinking of us all, apologies again for the tardiness in updating, I'll let you know how I get on during round 7 - promise!

Alan, Liz, Kathryn, Hayley & Kyle

Posting Comments - a lesson from a teenager (ex)

Dear all,
a few people have had fun adding comments to the blog, so here is a small tutorial.

Having chosen a particular post to comment on - click on the green 'comments' link at the foot of the post.  You may find the comments already displayed, in which case just move down to the comment box at the foot of the comment section.  Type in your comment.  At this point I recommend taking a copy of the text you type - there is nothing more frustrating than losing that fantastic witicism to the vagaries of software! 
Below the comment box is a small box labelled "Comment as" with a drop down arrow. Click on the drop down arrow which provides options. Now if you have a Google / AIM or listed account you can select those options. If you use this I recommend that you have logged in prior to writing your comment!!  If you don't have such an account you can select "Anonymous" or "Name / URL" - put in a name that I'll recognise so that I don't delete your comment.  I tested with Name/URL (no URL required) and got a comment to review in my e-mail with that name listed - so it appears to work.

I hope this helps those who would like to leave their personal messages.  Still have problems - email me & I'll post for you.

Update
I'm at home on day 6 of Chemo 5, so blood counts are dropping & I have to be a good boy and avoid infection for a few days.  I have a short chemo session on Friday with blood tests and at this point we will see how I'm responding with respect to Neutropenia & blood counts for platelets etc.  I'll let you know more when I know more!!  11:48pm - time for bed - nite nite all.

Chemo 5 of 8 has commenced and an update on Stem cell harvests

Hi Guys n Gals,
I'm back in Greenslopes this time with a city view, room 22, they must have felt sorry for me!! I came in yesterday 6th, having been absent (awol possibly) since Sunday 26th when the harvests completed.
So updating from Hayleys post from a few weeks ago.  Firstly we had to create an escape plan also known as epacse nalp, I was getting seriously stir crazy - some of you may have seen this on facebook.

Hayleys blog expected the harvest to be on or around Monday 20th Feb, no such luck, by the following Friday I was able to go home but the thought was that we had missed the stem cell harvest window of opportunity. Here is a picture of my blood counts - when you see neutrophils at zero, this is the Neutropenic isolation stage.  (You can tell I was stir crazy!) The next day they shot up & I could escape.

Once I was home the next day I got the call "your stem cells are ready to be harvested" - so back to hospital on the Saturday after Fridays release!  Stem cells are "immature" cells which become white cells, red cells or platelets as your body requires.  Harvesting entails tricking your bone marrow to release stem cells into the blood stream, taking your blood through a machine which separates the blood by the density of its components, then spinning off the stem cell components.  Each harvest for me takes about 6 hours if all goes well, 6 hours where you are unable to move the arm where they take off the blood or get out of the bed/chair!!  In that time they effectively run your whole blood volume through the machine 3 times.
The aim of the harvest was to obtain 10 milli thingies per milli wotsits per kg of weight - just remember 10!  With the stem cell count Willi (Wilhemina) the nurse, reckoned that a count of 19 would give us 1.9 - so that was the target for Saturday, the result of which we received on Sunday at 3.1 - so I was a very good boy - however - after the Saturday harvest I was scheduled for a routine platelet transfusion, my fourth. You can guess that after the 20 minute transfusion I reacted, pulse around 140bpm, shakes, very itchy rash - bugger!! Anyway they stabilised me & set me up for another night in hospital for monitoring.
Next morning Willi turned up expecting to see me stroll up at 8:30 & there I was in the bed - she was confused!!  My stem cell count on Sunday was around 55, so that would deliver say 5.5, totalling 8.6 potentially, remember we needed 10.  Back on the machine for 6 hours, this time with a really nice hot air blanket (not powered by me!) - this was ideal for an immobile state and with Hospital cool air con!!  Here I am under the blanket with the machine to my left.  Below are the harvested stem cells.

Finally I escaped the hospital Sunday afternoon.  Monday I got the call that we totalled 9.5 (well done Alan) and no need for a further harvest.  To put the 10 requirement into perspective, they use the following amounts for stem cell transplants - USA 2.0, Europe 2.5, private Doctors in Aus. 5.0 - so we have plenty for a number of transplants if required.  The stem cells have been further analysed and separated off in a specialist lab and are now frozen awaiting any future requirement for transplant.

Following the harvesting I've had just over a week of recovery (I was very tired Monday/ Tuesday post harvest) where I have been able to do a few things - drinkies (non-alcoholic for me) with work colleagues Wednesday, watched some climbing / socialising Friday evening, went with Kyle and Liz to the Redcliffe triathlon on Sunday - so some fresh air there. I even went to work for a few hours Monday - ostensibly for lunch but that fell over, and I attended the Management meeting Tuesday - for brain stimulation prior to coming in for the Chemo - I'm not sure which is the lesser of two evils!!

I'm in now for chemo round 5, the A cycle which is the gentler of the two, hopefully I will be out on Friday, possibly Saturday - we will see!  Counts will drop with the low expected a week on Friday 16th, however hopefully we could manage this with me being at home, it all depends on my blood counts!!

I hope this has filled you in with Hairy Mels goings on.  I'll give another brief(er) update probably around the time of my next blood count low - so end of next week ish!!

Keep well, keep reading, thanks for any comments, and remember if you have a persistent ailment - see your Doctor!!

Groundhog day

G'day, G'day!
I have been a bit slack lately with my witty and hilarious blog posts (...) so thought it was about time I hit the keyboard to bring you all up to speed. I was all phsyced up to write to you all an awesome piece on the mysterious Kidney stone ordeal, which might i add, the drama was seriously down played by Dad on the blog, but his screams are still ringing in my ears.. heh heh heh! He will do anything to stop me from eating my delicious yellow thai curry, 6 hours in A&E is obviously proof!

Chemo 4 started on Tuesday 7th Feb with a session in Day Oncology and then straight up to the ward to be pumped with Cycle B drugs.
I'm sure you can remember cycle B from last time - exhausting, nausea and the big rash. This time it didn't fail to deliver yet again. Bed bound for a few days, suitcases under his eyes, vomitting and diarrhoea (yum) and the infamous rash, all making an appearence. The punishment for all of these symptoms? ISOLATION! Much to Dads dismay (and boy oh boy did he let the nurses know!) he spent the hours climbing up the walls, getting very frustrating for not being able to even leave his room. After completing his sentence of 48 hours in isolation after the symptoms has passed Dad could be heard from our house 15 minutes away negotiating with the nurses, time to go and sit in the sun!
Geoff, dads new friend, who is also suffering with the same type of Lymphoma who was in isolation at the same time as dad for the same condition, was let out of isolation after only 24 hours. Dad is still making reference to that one, days later...

Then Wednesday 15th hit and the neutropenia kicked in, the white blood cells dropped off the charts and it was back to lock down for dad. He is allowed out of his room this time, but he has to wear a mask. As he is feeling well and normal, he has been inventing new cheeky ways to pass the time. If you happen to be up on ward 31 anytime soon you will most probably notice a bald man with a series of different pictures drawn onto his face masks! (Avoid him at all costs! kidding!)

So now we sit and wait until Monday, which will be almost 2 weeks straight in hospital! Monday will see the stem cells hopefully being harvested to be frozen for future use. Once enough stem cells have been harvested he will be free to come home! The big key to harvesting enough stem cells is to avoid infection, which is why he has been kept in hospital for these couple of weeks. A small price to pay if the stem cells can be harvested correctly!

Hope this has filled you in a little bit!
Love to you all,
Hayley :)

Chemo 4 delayed...

Hi again, just to let you know that my planned chemo has been delayed by a week. My blood counts were all good apart from my platelets which were in the mid 70's but had to be above 100.  So I'm on hold for a week going back in next Tuesday.

Silver lining = I had previously bought a ticket to see Roger Waters performing the Wall, I had to sell this ticket. However I have just bought an equivalent ticket and saved $50!!! Yippee!! Prog rock here I come tomorrow!!

Also I can go up to Caloundra at the weekend to watch Kyle compete in his triathlon. So a positive there! Of course later in the the cycle sequence this week trips me up so I'll have to cope with that as it happens.

Check back in a week or so..
Alan

Big respect to all the Mummy's out there

Hi peeps,
Why the blog title you are asking??
Well we had quite an exciting day on Friday - NOT!! The day was going well, I'd cleared a number of chores and chose to take Hayley out for lunch before finally dropping the insurance paperwork for our December holiday off at the post office. Then I walked home.....and I started to get discomfort in my lower back - around the kidneys. Oh well not an issue, however as I got closer to home, the pain levels increased and of course every ache and pain is referenced to the Lymphoma and Chemo.

Well to cut to the chase, I got Hayley to take me to the emergency department - her stress levels were high, it was pouring with rain, heavy traffic and a Dad sitting in the passenger seat in significant amounts of pain and making sure poor old Hayley knew that!!! As it panned out the ED quickly gave me some morphine, did all their tests (would you believe, BP, temp & pulse were normal!) and sent me for yet another CT scan. Well by the end of the CT I'm afraid my language was extremely poor, pain was rated 11/10 and PLEASE CAN I HAVE MORE MORPHINE!!

So what was happening to poor old Hairy - it appears that I had a kidney stone - is that it you ask? Well with the amount of pain, and discomfort that came on on Friday, my respect for all those Mummy's has increased big time.   I only had to cope with pain for a few hours and they do say a kidney stone is as bad as delivering babies!!! I was lucky that the meds I was given plus a bit of luck passing the stone meant that this episode was pretty short lived, thankfully.   The hospital kept me in over night for observation and it appears that the kidney stone is probably related to my body trying to dispose of the Chemo & Lymphoma - so I am potentially at higher risk of these types of issues.

So apologies to the family for giving them quite a fright - it was nice that Hayley stood and held my hand, however I think it was her that needed the hand holding.   I recommend that whoever you are that you avoid kidney stones - pain like you would not believe!!!

I'm due to start chemo 4 on Tuesday, which will be a B type chemo, and you may recall I had big reactions when I had the first B chemo with the rash, issues with body temperature control and so on.  So it will be interesting to see how I react during this session.  We will have to wait and see.

Prior to the kidney stone episode, during the week Tony sent me for another bone marrow biopsy.  We had discussed the case for potentially taking bone marrow earlier rather than later for use in a stem cell transplant.  The situation is similar in both cases of early or late harvesting, early harvesting requires the bone marrow to obviously be 'clean', late harvesting may be more difficult to achieve due to the impact of all the chemo sessions.  Anyway the biopsy will give Tony a heads up as to where we stand at the moment.  My head is saying that we may be a bit early yet.

I'll let you know how I get on with Chemo 4 this coming week.  Behave all of you!!

Alan