As I settle into the aftermath of the whirlwind of generosity expressed a few weeks ago, I still am at a loss to express my gratitude at both the number of people who donated and the amount that was given. It has facilitated the next step in my treatment, which has paradoxically left me feeling pretty miserable in amongst a real sense that other people, both those we know and don’t, are journeying with us and supporting us.
I always remembered my treatment from the first line therapy with oxaliplatin 5 years ago with disdain. It is a chemotherapy agent that takes sometime to recover from and I am still feeling the effects of it now one week on. On the day of the infusion, I actually felt really good. There was a sense that maybe this treatment wasn’t as bad as I remember it. On the second day I got hit with hiccups. A benign common occurrence can become a tormentor when you endure 8 hours of unrelenting hiccuping. You cannot sleep, your muscles and chest become sore, and you just exhaust yourself. Hiccups are largely a manifestation of nausea, and can result from irritation from the diaphragm as well. These hiccups won’t succumb to any remedy that I know of, and I have tried a lot, you just have to wait them out. When finally they relented, I was able to sleep.
My sleep was then interrupted by what seems to be the next of the side effects, this time from Avastin. Supposedly it can cause tumour pain, although I’m not entirely clear on the mechanism, and this was what would wake me at three in the morning. Fortunately it was able to be relieved with some potent pain relief, but the paroxysms did persist for a few days.
Finally, the biggest of the side effects I have had to battle with over the past week has been extreme fatigue. Its a sense where no matter how much sleep you get, you just don’t feel refreshed. This has been what has stopped me from getting back to work on Monday as I had planned, but hopefully tomorrow, two days later, I will be able to do so.
So all in all it has been a rough 7 days. I guess it was to be expected but that doesn’t make living through it any more pleasant. Fortunately I move on to the well phase now between cycles and resume normality as much as I can. I suspect the next few weeks of life will involve some significant decisions on my behalf with regards to work and planning exactly how Hannah and I want the next few months of our lives to play out.
Until next time…
I have officially finished my chemotherapy!!!!!
This means no more dreading the next dose, no more neurotoxicity, no more dry skin, no more nausea, no more extreme exhaustion etc. etc…. The list can go on.
What it also means, is that instead of preparing myself for the next toxic onslaught, I can finally focus on the recovery and getting better. Currently, I have very little stamina for much at all, a very low exercise tolerance, and still have numbness in the ends of my fingers from the oxaliplatin. The next 6 months will be focused on building back the exercise tolerance and fitness, a holiday in SE Asia for 2 months, and generally just getting myself back into working order. It has been alleged that it takes roughly 3 – 6 months to recover completely, so its not an automatic fix.
So, the next step in my plan for an amazing come back, will be the purchase of a road bike, with the aim of cycling the Taupo race in November. I’m gonna be like Lance Armstrong!!, except I still have the family jewels :-).
Its a huge relief to have all the chemo done, and now as far as treatment goes, its a watch and wait affair, and hope that the cancer doesn’t return. The litmus test will be whether or not I’m still alive in 5 years time (which is now more like 4 1/2). Lets start the countdown…..
I’ve been 3 days chemo free at the moment, and only another 3 days till the next round starts. Round 7 was a big improvement over round 6, mostly due to the fact that the oncologists decided to drop the oxaliplatin dose a little bit because of some of the side effects I was getting off it. There are a number of neuropathic side effects, but what the specialists were concerned with was the loss of sensation in the fingertips. This side effect can be potentially permanent, and so is considered a dose limiting side effect. They dropped the oxaliplatin from 270mg down to 210mg.
The net result of this dossage drop was that the side effects were not as bad, and didnt last quite as long as the previous round. So at this stage I can still say that round 6 was the worse, and round 7 was a definite improvement. I’m anticipating they will stick with the current dosage for the last round, meaning I might finish off not feeling quite as bad as I might have thought.
ONLY ONE MORE ROUND TO GO!!!!
From Reuters: This is the same medication (Capecitabine) that I’m on!!!.. and my fingerprints are slowly disappearing as well! Better not fly into the states anytime soon I guess.
“HONG KONG (Reuters) – A Singapore cancer patient was held for four hours by immigration officials in the United States when they could not detect his fingerprints — which had apparently disappeared because of a drug he was taking.
The incident, highlighted in the Annals of Oncology, was reported by the patient’s doctor, Tan Eng Huat, who advised cancer patients taking this drug to carry a doctor’s letter when traveling to the United States.
The drug, capecitabine, is commonly used to treat cancers in the head and neck, breast, stomach and colorectum.
One side-effect is chronic inflammation of the palms or soles of the feet and the skin can peel, bleed and develop ulcers or blisters — or what is known as hand-foot syndrome.
“This can give rise to eradication of fingerprints with time,” explained Tan, senior consultant in the medical oncology department at Singapore’s National Cancer Center.
The patient, a 62-year-old man, had head and neck cancer that had spread but responded well to chemotherapy. To prevent the cancer from recurring, he was put on capecitabine.
“In December 2008, after more than three years of capecitabine, he went to the United States to visit his relatives,” Tan wrote.
“He was detained at the airport customs for four hours because the immigration officers could not detect his fingerprints. He was allowed to enter after the custom officers were satisfied that he was not a security threat.”
Tan said the loss of fingerprints is not described in the packaging of the drug, although chronic inflammation of the palms and soles of feet is included.
“The topmost layer … is the layer that accounts for the fingerprint, that (losing that top layer) is all it takes (to lose a fingerprint),” Tan told Reuters.
“Theoretically, if you stop the drug, it will grow back but details are scanty. No one knows the frequency of this occurrence among patients taking this drug and nobody knows how long a person must be on this drug before the loss of fingerprints.”
Right now I’m just over a week into the 6th round. I’ve just turned around, and am no longer the dreary miserable soul I was about 4 days ago. This round has been tough, both with symptoms as well as the emotional and mental toll it has taken. It would be fair to say that on Monday and Tuesday this week, (days 4 and 5 post infusion) I was pretty miserable. Hannah can back me up on that one. I think this is largely from being utterly sick of feeling sick, as well as just the fact that feeling sick takes its toll mentally over time. I’m really really not looking forward to the next two rounds of chemo, its starting to really drag, and I CAN’T WAIT till its all over.
On a slightly different note, I’m currently down in the (not) sunny south, Hannah and I are in Dunedin for 10 days visiting her parents. Its freezing and rainy and a little snowy on occasion, but my cold symptoms are slowly subsiding, so I’m beginning to handle the temperature down here. There are lots of open fires in my life right now. Anyway, it means I’ll be a little slack at the blog for the next bit.
I’m 3 days into the 5th round of chemo. This particular round started off a lot worse than previous rounds. Since I no longer have a portacath, this was the second infusion into my left arm, and it was fairly painful. Thankfully, since i’m alternating arms, there should only be one more infusion into the left, and two more into the right by the time I finish. Furthermore, this time round, I had a lot more symptoms immediately after the infusion. I had really bad cramping, cold sensitivity and nausea. I have deliberatly hit the anti-emetics a lot harder this time, and it seems to have got on top of the nausea which is nice.
So once day 1 and 2 had passed by, I have steadily improved, and if anything, would say overall that this infusion isn’t too much different from the previous 2, apart from the rough start to it all.
Herbal teas seem to be the mainstay for fighting nausea, as well as keeping me re-hydrated, since anything cold causes my throat to cramp up. My sister just brought me up a huge delivery from this place in Wellington which definitely does the trick… I have just finished a very nice cup of Jasmine Dragon Pearls. 🙂
So I have finally finished round 4 of chemo, marking the half way point!!!.. Typically people get between 6 and 8 rounds of this stuff for this particular cancer, so, being younger, they tend to throw all they can at me meaning 8 rounds of it. Its nice to finally reach a milestone of sorts, even though the second half will inevitably be a lot harder than the first half due the cumulative nature of the toxicity. Round 4 was a reasonably good round for me, about as bad as round 3, which at the time seemed bad. But I think I had expectations for a much worse round 4, making it seem less bad.
Symptoms wise, I felt the fatigue ALOT worse this round, the first 5 days involved and awful lot of sleeping. Also, my cold sensitivity was much more prolonged, but about a few extra days. That part is not so fun either. Right now I am really appreciating the fact that I can drink a nice cold glass of water, its so refreshing!!! These little things in life you take for granted when you cant do them anymore!
Of course, this round was also interrupted with a surprise trip to Melbourne to see the Formula 1 Grand Prix, which was really good, and a nice distraction from the nausea and symptoms. It seems like the whole thing has gone quite fast, and it is a little depressing to know that I will have to relive it all 5 days time for the beginning of round 5.
Anyway, my blogging has been a little lack-lustre over the last week or so, so I will endeavour to pick up the pace a little bit.