End of the 2nd cycle

On Friday I had the last of my chemo for a while.
I don't know that it's done a heck of a lot for me other than help with my blood production and counts.
It will take about another week before I see the counts start to rise again, having been knocked back by the current dose, but hopefully I will have some really good numbers after a few weeks of no chemo.

Right now I'm physically unable to do much at all. I keep making the mistake of standing up and walking to some part of the house for some item or such and then almost passing out as my blood pressure drops, my heart starts racing and I become breathless. It's really not nice.

On Friday at the blood and cancer day ward it was decided that I needed two units of whole blood, this was based on a blood test that was two days old, so who knows what the real readings were like? Ultimately I was only given one unit because there was not enough time to complete two.
I have to get a blood test on Monday morning and then on Tuesday I'll get more blood. I'm betting the counts will be through the floor!

Last weekend was a real mixed bag as far as how I was feeling went. I'd had the first session of the current cycle of chemo on the Friday. I felt awful on the Saturday and decided that I would not race the next day at a hillclimb event as planned. Then on Sunday I woke early feeling really good.
So along with my brother Mark we headed off to the Wairarapa for a few hours motor-racing.

I didn't have any problems with driving the car, but walking around the pit paddock was a real effort.
The organisers were kind enough to let me run in any order I liked. That way I could get my practice and three timed runs all done as quickly as possible and get home to rest.

I used to hold the record for the event (Admiral road) until a few years back when I was pipped by just a fraction of a second by then NZ rally champion Richard Mason. I've always managed to cover the 900 metre course in the 36 second bracket. Last Sunday I was struggling to post a low 38 second time.
Ultimately I was beaten by Ryan Stevens when he managed a 37 second run. I was a little disappointed until I was reminded by both Mark and Sarah that I'm sick and in no way on form. Second place was a very good result considering my state of health.

I'm still waiting for the new drug to be imported. In fact I'm still waiting for someone to front up and take charge of getting it. Lots of talk from the doctors when I see them face to face, but it's always like ground-hog day when I see then again next time.  ..a little frustrating. I've decided it will be at least March before anything happens... we shall see.

My broken rib seems to be settling down. It no longer pops in and out as I move, cough or breath.
It's now totally painless and I can sleep on that side without feeling like there is a lump there.
It's amazing how the body can stil heal something that is broken and constantly moving.

A few people have asked me how I'm managing to cope income-wise now that I can't do any physical work. I'm lucky in that I have my wonderful wife Sarah to support me, and on the business side of things I've been able to grow the internet sales from behind my computer keyboard with very little physical effort. I've also developed some new skills in finding car parts on the internet and procuring them for my customers at prices below what is available locally. It's work I enjoy and as I'm just sitting behind my desk and not moving around too much I don't get fatigued and end up coughing all day long.


..Ron

Another Chemo day

I've been slowly improving as of late. I had to take the long view to realise it because most days I feel like crap.
However I can now see that there's been a big improvement over the last few weeks. It's one thing to say I feel like crap and have no energy because I get tired walking to the fridge. Then it's another to say I feel like crap because I got tired walking to the letter box and back. (My letter box is 150metres away up a steep gravel driveway).

Anyway yesterday I felt pretty good and today I feel even better. However I've just returned from the hospital, having had my vinorelbine palliative chemotherapy. So tomorrow and for the next two weeks I'm expecting to feel pretty "average" as my blood counts drop and then recover.

I'm still having low-grade fevers and sweats (although no true night sweats) and my skin itches like crazy. I still cough when exerting myself or when there's a change in room temperature.

Today I spoke with another of the haematology doctors and he lamented that it was a shame that Brentuximab (Adcetris) was not an option. I quickly told him that I thought it was and that I had the money to pay for it as soon as it was available internationally. He got quite excited by that and said he would follow it up immediately.
He did then mention that because it was a drug that was being imported privately that it would need to be administered in a private clinic such as the one he ran. Hey if it gets me treated and healthy I don't care who clips their ticket along the way.

Apparently M.D Anderson clinic in Texas charges US$40K just for pretreatment tests. Now that I would object to! So I won't be rushing off to the States any time soon for treatment.

Next hit of vinorelbine is Friday next week. After that? who knows? Hopefully there will be word on the Brentuximab.

Blood counts still climbing.

The haematology nurse just phoned to tell me the results of today's blood test. They show that my counts are still improving.

Platelets are up to 37 from 11 two weeks ago. (normal range 150-400)
Haemoglobin is 124 up from less than 100 (normal 130-175)
White cells are now 3.8 up from 0.63 (normal range 4-11)
Neutrophils are now 1.5 up from 0.1 (normal range 1.9-7.5)

My platelet count will never be back in the normal range, It's hovered down around 30-45 for years now.
It's a legacy of the stem cell transplant and poor marrow.

However the other counts are rocketing up in leaps and bounds percentage-wise.
The white cells and neutrophils mean I have a better first line defence against infection and the higher haemoglobin equates to more energy as more oxygen is able to be carried to the muscles.

I still have this really debilitating cough though, kinda hoped it would go with the chemo.
Perhaps it will when I finally get on the Adcetris. When ever that will be.

I guess I'll know more after my appointment next Friday.

..Ron

We have new blood!

Finally after more than 6 months of blood transfusions I have started producing my own blood faster than it gets used up. My blood counts today are higher than they have been in ages, and all done under their own steam.

Last Wednesday I went into the Blood & Cancer day ward and was given a unit of platelets and two units of whole blood.
I'd been making no new blood of my own due to both the Hodgkin's infiltration of my bone marrow and the myelosuppressive (suppresses bone marrow and therefore production of blood)  nature of the chemotherapy.
The plan was to give me a big enough top up to get me through till today, a period of seven days, so I could visit family in Christchurch.

The doctors did not want me to travel as my neutrophil count was almost zero, at 0.1 This left me with almost no protection from infection and at risk of neutropenic sepsis and fever.
They wrote me a covering letter to give to the doctors at Christchurch hospital outlining my illness's and stating that I was traveling against their advice. They were concerned I'd pick up a rogue bug on the airplane and have no defence against it.

Well personally I've never been one for shying away from doing something just because it might kill me. Heck if I didn't do anything for fear of dying, I might as well not get off the couch.
So as you can imagine I am very, very pleased to find out that not only was I not at great risk while visiting my sister and family, I was actually producing new blood cells as I sat on said couch and watched New Zealand win the rugby world cup! Awesome :)

I did of course take precautions while away. I wore a surgical mask on the plane and avoided possible sources of infection such as raw food and contact with pets.

I next have chemo on Friday 4th November so I will have a good chance to raise my blood counts further and build up a bit of a reserve before they are wiped out again. However I'm sure that they will then return even stronger again after that.

Cheers!   ...Ron

Haematomas and more of the same.

I was kind of hoping that this palliative chemo would make an instant improvement in my level of comfort. So far I feel exactly the same, perhaps it's way too soon and perhaps I expect too much based on previous experiences with higher strength regimes.

I had a session of vinorelbine last Friday and another today.
I am still suffering from the low grade fevers, constant itch and fatigue. Perhaps things will improve once this second dose does it's job.

My haemoglobin and platelets are low so they gave me two units of whole blood today as well, That should perk me up a little over the weekend.
Sarah and I are planning a few days away next week so I'll be given a little extra blood mid-week to see me through to the week after. There is no chemo next week.

Last Thursday was the day they inserted the PICC line. It didn't go well.
I should have noticed that my right bicep, where the line was fitted, was very tight and swollen.
I didn't really think about it until the blood started pouring down my arm as I drove away from the hospital.
The line had leaked where it goes into the vein, filling the surrounding tissue with blood (a haematoma) and then ultimately pushing it's way out through the point where the line enters the arm.

I should have taken a picture it was a huge mess!
I returned to the day ward just as the team were leaving for the day. I became the centre of attention for a while, the nurses fussing over me, changing the dressing, only to have it leak again. Then one of the doctors suggested I be given another unit of platelets to help stop the bleeding. I didn't get home till quite late.

Today was much the same time-wise. Arrived at 8:30am and departed at 3:30pm. It all makes for a very long and tiring day.

I'm hoping for a relaxed weekend.. fingers crossed.

..Ron