Adcetris Days 11 & 12, Cycle 1

I'm still plagued with back-ache. It radiates into my left flank at the base of my rib cage and aches like mad. I went to the osteopath again yesterday and I have to admit the original back pain is a lot better but the flank pain is just as bad. Originally I thought it was referred pain but now I'm guessing it's where the actual muscle is and it's probably torn.

My cough is virtually gone completely as has my itch. I also no longer sweat heaps either, which I always thought was caused by the prednisone. So on the face of it all my B-symptoms have disappeared within the space of a week
I still feel a bit fuzzy and dull with the occasional stomach ache, although a lot more mild and that's all due to the Adcetris itself.

However I am very well overall. My daughter Ashleigh and her partner Michael return to Brisbane today. I'll drop them at the airport as soon as I finish this blog. In the two weeks she has been here she has seen me go from a fragile, coughing and fatigued state, back to an almost normal person.
We just got back from having an ice-cream and a walk along the pier/wharf at Days Bay. It's a fantastic Wellington day, no wind and hardly a cloud in the sky. It's so fantastic to go from being so sick to so well in such a short period of time and to get out and enjoy the time we have together.

Last night the four of us went out to our favorite Asian restaurant for dinner. We ordered nearly every entree on the menu, it was quite a banquet. We then came home and Sarah and I had a long soak in the spa pool, (it did my back the world of good). Ashleigh and Michael decided to stay dry. (Probably deciding it's not cool to be in the spa pool with the "Olds").  However it was so good to catch up with Ashleigh these last couple of weeks and spend some quality time together.

Oh and I'm gaining weight finally !! I've put on about 1kg in the last week!  Awesome!
Hodgkins is known for reducing weight. It looks like the handbrake has come off and I'm away.

Till tomorrow... Ron

Michael, Ashleigh & Dad

Ron & Sarah

Adcetris Day-10, Cycle 1

Another day whereby it's almost impossible to drag myself out of bed.
Mornings are just a total write-off. It's 2pm now and I'm feeling barely human. My back aches, my stomach aches and I feel dull, as does my head which is containing a mild headache. I've also had to run to the toilet three times in the last four hours. Other than that I'm in great shape! :)

My blood counts are the best I've seen them in quite some time, almost normal except the platelets at 89, but that's the highest count I've had in three years! Hemoglobin is 110, still a little anemic but it's all my own blood, I made it myself without the aid of a transfusion :)

I've not coughed at all today, and my itch is probably more habit than anything. It's probably 10% of what it was at it's worse. I no longer feel like a mad-man in a straight jacket full of fleas.

I'm not doing any work today, other than Internet sales that must go out. I may not work tomorrow either.
I think my body needs to recover. Some couch time will do me good.

Tomorrow I shall see the Osteo again and get my back manipulated. I also need to book in with my GP and get the "thing" on my elbow dealt to. My GP wants to cut the scar tissue away and re-stitch it. This time he will use normal non-dissolving stitches and we shall leave it alone until it appears completely healed. Last time when it was biopsied in hospital they used dissolving stitches and they didn't hold up. This caused the wound to "heal" in an open state and the skin never knitted, just built up scar tissue.

Sorry for yuk pic, but it's best that I document these things.
I've had it for over a year now. It just appeared as a small hole. I thought it was a pimple at the time. In hindsight it was probably related to the Nocardia infection. Combine that with high dose steroids, a suppressed immune system and it's no wonder it wouldn't heal properly.

I think cutting most of the tissue out and then leaving the stitches in for as long as possible should do the trick. Now's the time to do it, with a good immune system and high platelet count.  Let's see what it's like in a few weeks time.

..Till tomorrow

Adcetris Day-9, Cycle 1

I spoke too soon!
Last night I developed a stomach ache that invaded my night's sleep and got me up a couple of times with diarrhea. When I woke this morning I was back to feeling like that truck had not only hit me but had backed up and had a second crack at me. Everything hurt and I felt very ill. I spent nearly all morning curled up on the day bed in my office. Not good.

By midday I felt slightly better and dragged my sorry butt into the workshop to finish the Honda S2000 suspension job. Luckily I've had the help of young upcoming racer, Danny Picard to help me. Total Performance and Flextech have sponsored him this year and he offered to help me out with the more physical work this week in return. I don't think my back would handle even lifting a wheel off a car at the moment.

I popped in and got a blood test today too. If I'm neutropenic that might explain the stomach ache, and would be a bad thing. Although I'm not running a fever. I'll phone the Blood & Cancer Centre tomorrow and check the results. If there's anything bad I can then get it sorted.. blood transfusion or growth stimulating factors.. whatever. Hopefully it's just the chemo having killed off all the good bacteria in my stomach and it's complaining.

Following yesterday's post I received an email from my niece Natasha. She informed me that whenever she took tramadol she itched like mad. So that explained the sudden return of the itch the previous night. Now that it's out of my system I'm not itchy and today I have only coughed once.
So I'm very happy with the results of the chemo so far.
Thanks Tash, I think I'll stay off the tramadol.

...Ron

Adcetris Day-8, Cycle 1

Today I woke feeling almost normal.
The flu like symptoms have resolved as have most of my aches. The stomach ache was probably the worst of it. I am feeling a little "wired" but that's not unusual for me anyway, It's a mix of the prednisone and Hodgkins.

My cough is still really good, It's no longer a dry choking asthmatic cough. Now I just feel the need to cough to clear my chest of phlegm and when I do it's thick and sticky, but once cleared I'm fine.

The visit to GP yesterday was very productive. He agreed that I'd probably torn a muscle in my back and that only time would heal it. I managed to coax him into prescribing me some Tramadol for pain relief. I took some last night and it worked well on reducing my back ache but then I started itching again really badly after having not itched all day. Hopefully it's a side effect of the tramadol, I really hate that itch and after two years of it I just want it gone!

The doctor also gave me some exercises to do to strengthen my left foot which appears to have a torn tendon in it. It's been holding me back from exercising for several months now. It was very weak to start with and I never really regained any real strength in it after leaving hospital last year, then I snapped it a couple of months ago stepping off the water-pump box onto the adjacent bank in the garden.

I'm actually working in my workshop today. I have a Honda S2000 Convertible in for some race suspension.
The customer supplied his own parts and as expected they don't fit properly and I need to make up some brake fittings and change over the springs. Someone has robbed the correct coil springs out of the boxes and put back ones that won't work on his car. Still it's not exactly hard work and I enjoy getting the results at the end of the job.

So, assuming I'm still feeling better tomorrow, it looks like it takes a week to get over the worst of the chemo short term effects. Mind you the first few days I was fine. This is one of the reasons I'm logging all this, so I know what to expect in the following cycles.

Bring on tomorrow!

Adcetris Day-7, Cycle 1

My Back ache is the centre of my world right now, It's a gnawing dull ache that makes me feel ill it's so bad. It got me out of bed way too early, I'd have liked to have stayed there all morning but I couldn't find any position laying down that relieved the pain, so I got up.

I've phoned my GP and booked to see him this afternoon. I have a list of about eight things to discuss with him. Ranging from the back pain, to my ankle injury that's preventing me from exercising, and a couple of weird ones in between, like the "thing" on my elbow that won't heal.  (I call it a "thing" because it's not a sore, it's not an ulcer... it's just this 4mm hole that won't heal over).

I had another look at the list of Adcetris side effects last night. I think I can tick quite a few of them.
I think it's weird that I'm still feeling like crap seven days out. With previous chemo I'm usually feeling better by about now.

Here's the list of common side effects, I've highlighted the ones I currently have in green and the ones I don't in Red. (My itch is greatly reduced compared to what it has been)

Back pain, constipation, cough, diarrhea, dizziness, dry skin, hair loss, Itch, headache, joint pain, loss of appetite, mild muscle pain or spasms, mild sore throat or mouth pain, mild weight loss, night sweats, nausea, stomach pain, tiredness, trouble sleeping, vomiting.

Now one really odd thing is that my cough is almost completely gone. To be fair though I haven't exerted myself today and that will almost always provoke a cough. However to get this far into the day without a single cough is unheard of in the last couple of years.

I don't want to jinx myself but this does look promising for an eventual reduction in prednisone and it also may show that my lung damage has not left me with a permanent cough. My quality of life will be much improved if and when I can beat this Lymphoma. Of course what it does mean is that a lot of what is showing in my lungs on the chest x-rays and CT is in fact lymphoma. This was always a bit of an unknown area, even the CT radiographer had no idea. The fact that I can have such an improvement in just seven days is promising.

I'll update once I've seen the GP this afternoon.  ...oooh  just noticed my pain killers have kicked in.. almost no back pain!  :)

Adcetris Day-6, Cycle 1

Starting every day with incredible back-ache, stomach ache and a headache is not my idea of fun!
The thing that makes it bearable is the knowledge that the drug appears to we working.
Way too early I know, but when you've had a horrible choking cough for over a year and all of a sudden it's a tenth of what it was, you have to assume it's the Adcetris you took six days ago.

My itch is also milder, possibly due to my body no longer trying to fight the lymphoma with histamines or whatever the mechanism is that makes some Hodgkins Lymphoma sufferers itch. No one seems to have a definitive answer as to why. Anyway, it's greatly reduced and I'm very happy about that.

It's almost 1pm now and I'm only just becoming a functioning person again. I lay in bed this morning groaning about my back pain and unable to find a sweet spot that allowed me any degree of comfort. I was in so much pain (if pain is the right word for a severe dull ache?) that I couldn't even concentrate on watching TV.  I've refilled the spa pool overnight and heated it to 38C, I'll get in later in the day once I stop feeling like I do right now. It's a small window of opportunity as I know by about 7pm I'll be in agony again. (OK maybe not agony but bloody uncomfortable!)

Thing is, I can't say for sure that this has anything to do with the chemo. Muscle pain is one documented side effect, so I guess tearing a muscle in my back, which is what I and my Osteopath believe, was never going to be a painless affair. I think I'll let my GP have a look next week too just in case I've done something more serious like crack a vertebrae or something (brittle prednisone affected bones and all)

I recently got some feed back from a reader who said her Doctor recommended she read my blog. Gosh, where would you start?  I write this blog for several reasons, one to document my journey so I can lay out a timeline rather than rely on my crappy chemo brain to remember. Then there's the need to keep friends and family informed and another possibly more important is to document my journey so that others with the same or similar illness can get some idea of what to expect.

What I do hope that everyone gets from my blog is the message that having cancer is not always the end of the world, it's a bit of an annoyance that's for sure! but it's also a great motivator. You no longer take anything for granted. I'm convinced it's made me a better person by helping me focus on what and who is important in my life. Then there's the challenges it's thrown at me, all of which I have met.
Everything from shipping my own stem cells around the globe, learning about all aspects of my treatment and to a certain extent just staying alive! ..Something I'm getting quite good at it would appear as I enter the seventh year of battle. I appreciate that many never get the chance to fight the good fight.

However it would be fair to say to that the last seven years have been some of the best I've had and the bad times never seem so bad looking back.

...I'm waffling, ..Till tomorrow, Cheers!