Complete Remission.

It’s September 28, 2015, and I will remember this date. Got the results of the PET scan I had last Thursday, and the result is


So there is no cancer activity in my body, it’s gone from my lymphatic system, from the thorax, from the neck, it’s gone from my liver and my spine. Chemo worked it’s charm, and I don’t need radiation therapy.

Yes, we are happy! (Although I’ll admit we haven’t fully embraced it.)

My blood results are also good: Hb at 6.9 (meaning it’s gone up 1.3 units in a week, from 5.8, which is better than anticipated), Tr is 145 (up from 100), Lk is 3.5 (down from 4.1; but 4.1 was brought to us by GCSF). So while not up to normal levels just yet, it shows my body is generating stuff on its own, or to phrase it differently: my body is standing on its own legs again. (OK, to phrase it wrongly.) And, while we are at it (statistics, that is), my weight is around 88 kg by now, pretty much the target I’d say.

So what’s next?

Date of next checkup is end of November. And next steps are to deal with the remaining side effects. Apparently I have a bit of withdrawal from steroids (who doesn’t!), so my face is swollen, red and full of little pimples, oh and it itches like there’s no tomorrow (so does my back and my arms); my joints hurt (hips, legs, elbows, shoulder, lower back), and some veins are acting up because of the chemo I took in.

On the bright side: my neuropathy is almost gone, in fact, if it happens to stay like this (but it won’t), I wouldn’t even be very upset. I can feel it’s still there, but I have sensation in my fingertips and all.

So after all the fear and pain and everything, I now know it was worth it and I’m on the right path.

Oh, and I can finally delete the movies from my computer… the ones I kept in case I have to spend a long time at the hospital — the superstitious fucker that I am…

today was a good day

One more to go!

I have one more IV to go! Funny how I said I can do this cycle in whichever way, nausea, whatever, I don’t care anymore… In return on Monday I had nausea. So I decided this is not that funny and went back to discpline and decided I don’t want to do the cycle in whichever way, I want to do it my way… so the nausea went away by Tuesday. The control one has over one’s body eh?

Also, I hit the 87 kg mark. Granted, 3 of these 87 are water (prednisolon builds up the water supplies very quickly), but still, a “clean” 84 kg is not bad!

C05D06: side note on side effects.

Fell silent for a couple of days, but that doesn’t mean life ain’t happening. I started C05 in the meantime, blood results were mostly good on day 1: rbc and platelets perfect, wbc a bit low. Doc tells me this is normal, bone marrow is getting tired of this roller coaster of “don’t generate wbc now” – “no wbc at all now!” “wait for it” “NOW generate a shitload of ’em!”, so the usual amount of stimulation was only enough for a 3.9 wbc. It’s OK, but could be better.

Nothing much to report apart from this, so this will be a post on some side effects, because why not. And because I am by now convinced that chemotherapy is mostly about dealing with the little annoying side effects, and some big ones.

My fungus thing comes every cycle like clockwork: day 5-6 of the cycle, I can blindly start taking my Fluconazol, because if I look in my mouth in the mirror, I’ll surely see them — the fungi.

Anaemia: by now, apparently anaemia is a clockwork thing too (for these last remaining bits), comes in around day 4-5. Impacts my stamina somewhat, and my brain a lot. Workouts help with the stamina thing, I operate like sherpas do: can execute physical activity even with low blood oxygen. I could be a sherpa. “A scarce breed in NL,” Ian would add!

Just to be clear: the fact that I’m anaemic does not prevent me from doing sports. As a matter of fact, I got this toy yesterday:


elbow rest for the hassled vein kid #cycling #chemo

A photo posted by Gergo Lippai (@lipilee) on


Hair loss. The side effect most commonly associated with chemo. (Together with the extra water you retain because of Prednisolone, it results in that typical bald-n-chubby chemo patient look.) When you think of it, you usually think of hair on the patient’s head; well, that’s only part of it. Eyelashes (I have around 12 of them left, total), mustache and beard (not that I had too much in the first place, now there’s none), most of the hair on my legs (calf, to be precise; I look more and more like a pro cyclist), and, we need to talk about this as well: pubic hair. (By now, all of it.) Oh, and btw: apparently these last 2 cycles, the hair loss got stronger (I guess the amount of anti-hair stuff from the chemo adds up), for example my eyelashes really started falling out in the past 2 weeks.

Skin. Yes, chemo patients are not supposed to go out on the sun. Reason: we don’t tan, we burn. We need to use 50 factor sunblock if we do go out. Except when I did it, got burnt even with 50 factor. Or allergic, who knows. Nevertheless, I drove around 30 mins on the sun (well, in the car, that was on the sun) the other day, and got burned very badly. Swollen read intchy head badly. So I ended up just not going out on the sun at all. Direct effect of this is it gets boring inside during the day, and of course I only do workouts just before sunset.

Well, that’s it for today and on side effects.

Quick update on weight: I’m over 86 kg. Lot of it is muscle!

C03D16 quick update.

A very quick and dry update on c03: I stopped G-CSF after 3 days (as I felt some bone pain already), this resulted in 6.8/60/2 figures (Hb/Tr/Lk, respectively) on Monday’s blood test. First, this red blood count is the best I had since March (yay), second my platelets are down so I need to be careful with bruises as I found out hitting a box with my leg and getting a big black bruise (boo), third, wbc could be higher so I did another shot on c03d15 (yesterday). This should be OK: I didn’t have severe bone pain (and hopefully won’t get any either), and wbc should be up in the normals by tomorrow. (Judging from the feels, it might be there already.)


Got some funny allergic reaction, swollen eyelids for a change. Quite strong earlier, I can see fine now.

Weight status: 83.5 kg.

Out of the rabbit hole.

Bone pain. It’s not fun. I had it for around 3 days, of which 2 was truly horrible. (It got better first, just to attack with full power Monday evening.) You can’t really do anything with it (apart from futile attempts at “taking the edges off” with Paracetamol — which doesn’t really work here), and being a full body thing (at least for me: upper leg, pelvis, sternum, ribs, scapula, shoulders, and upper arms), it’s very hard to ignore… or to do anything while it’s on, for that matter. I am very proud of myself to actually get my shit together and still go for my daily 2 km. If you saw a guy walking around IJburg like this:


…well that was probably me.


The pain evaporated around 3-4 PM yesterday. It was truly very sudden, which made it very strange, like someone had turned a “pain switch”. Not that I’m complaining… With the pain witch off, the same someone turned on the fever switch, so now I have fever, we’ll see why today (I have a blood check appointment), and if it impacts anything.

I also slept through most of yesterday, so I guess “rest week” might really mean “rest”, as in “I don’t do anything but sleep”.

Weight status: 78.0 kg. This is the low end of my healthy weight range, and it will surely improve further, so: happy face!