C03D10 status – cycle 3 almost done (and some stats geekery.)

Can it be so, that I haven’t posted stuff for more than a cycle? Naughty hobby blogger!

First of all, an executive summary, to answer the most frequent questions on status of my treatment:

I am in the middle of cycle 3, out of 8 cycles — so 5 rounds left

I am generally fine: side effects are mild and manageable (apart from some not-so-mild), I’m doing daily workouts, and doing some work (not very much)

I am anemic (not enough red blood cells), but my body is getting used to it, and as a result…

…I continue doing my daily workouts (running/cycling/walking) — check on Endomondo (accessible only to Endo friends), Instagram, Facebook, or my related publicGoogle Photos Collection

There will be a big checkup with PET/MR, with lung and heart checks after cycle 4 (in about a month’s time); doctors will be able to comment on treatment progress then, but it is highly expected I’ll have to do the full 8 cycles to be on the safe side, regardless of the results

My spirit is high, and I am mostly in a good mood (as Juli can attest), and I receive tons (thanks!) of support from family/friends/colleagues

Wife and kids are doing great too: even with the side effects I am in much better condition compared to the 2 months of 40 degree fever back in Feb/Apr

OK then, on with the blog!

I have finished the IV part (or hospital part, call it whatever) of cycle #3 — GCSF part (you know: shooting yourself in the leg every day) is in progress. This time I’m doing 4 shots: Mon-Tue-Wed-Fri (so no Thu); hopefully this will help reduce (dare I say: avoid) the bone pain.

Still on the technical front, my blood results from the last couple of weeks are good surfing ground: from C02D08 onwards my red blood count was increasing steadily (besides WBC) all the way up to 6,5, thrombocytes to 331 (to pretty much normal values) — until this Monday when it dropped back to 5,3 and 142, respectively. WBC is down to 2,3. Not particularly good results, but from what I understand this fluctuation is normal after the IV part, and with the treatment in general: after all, chemo affects quickly generated cells, like blood cells (and hair, and skin, etc.) “Like the Assyrian empire”, to quote a classic… We’ll see how they go up again on my “rest week”.

More importantly, I decided to get a blood transfusion with the 5,3 rbc value, it is way too low, and for the days before the blood check I had felt some fatigue, a good sign of anemia — probably a good idea to get it over with so I have a good 2 weeks before the next round with a good energy level.

Even more importantly (and to move from medical jargon to to stats we all hold so dearly)), this didn’t stop me from doing my little workouts — typically 5+ km daily walks, or around 2 km runs, or, e.g., a 14km bike run on the day of the 5,3 rbc value. The panorama above the post is actually from that trip to Durgerdam. Absolutely lovely place with old wooden houses, boats (duh), and around 430 inhabitants. (Something I hadn’t noticed is on the left side you can see part of Juli’s bike and on the right side a part of Juli. Could just crop it to clean it up… but won’t.)

The key point is still: do something every day. If that doesn’t work out, then as frequently as possible. And despite the anemia, last week (22th Jun – 28th Jun) was a pretty solid week:

(This week may be somewhat better even, pending the GCSF effects. Also, I’m counting kilometres; at this stage I don’t care about calories you understand.)

In fact, last time I did this much was in November last year, a yet fully healthy month (well, supposedly.)

So to finish off on the good, sporty tone, and instead of a picture of a potato, here is us, wife and yours truly, on our bike trip:

C02D08, and more G-CSF (un)fun.

[I wrote this post on Sunday but wanted to wait for my WBC count before posting it. WBC is 20.6k as per this past Monday so basically on Saturday I made the jump from 1.9 to 20.6k, and so the post can be published now.]

Cycle 2 is quickly coming to an end, bringing overall progress to 25%. C02D08 (ie. Cycle 2, Day 8 — this is what I’ll use from on, advantage torrent users) passed fine, some side effects (this time: acid reflux) the next day.

But boy, I couldn’t get this G-CSF stuff in order, again. I just woke up afternoon of a 2-day long bone pain ride, 1 day of which I was basically unable to move. Worse than last time (MUCH worse), this time somehow it all concentrated on my pelvis and thighs, and at some point (around Saturday noon) I had to start taking semisynthetic opioid (druggie!) to somehow manage and not go insane. Last time I could do with Paracetamol and Ibuprofen combined, this time it was a double dose of long-effect Oxycodone, plus short-effect Oxycodone, plus Paracetamol. And it didn’t take away the pain, either, only reduced it. Results: screaming pain (yes), staying a full day in the bathroom (I couldn’t move any more after getting out the tub; luckily my loving wife brought me a mattress and blankets), losing 4 kilos in 1 day as I couldn’t eat or drink, and I also sweated a lot (interestingly: through my head only, I could feel sweat drops forming in 1-2 seconds and running down my head when I concentrated on breathing the pain out, relaxing muscles, etc.; if I had any strength, I’d have filmed it). So if last time was a rabbit hole, this was a rabbit fucking dungeon. Don’t try it at home.

But BUT BUT: as last time, the pain diminished by now, I slept half a day, I can move around fine (I have some numbness in both my legs – after all, I didn’t move them for a day), and next time we’ll be smarter.

(Side note on where I probably fucked up for next time: based on discussion with my main doctor, I should have stopped taking the subcutaneous injections right when the pain started. I didn’t stop, I called the hospital on Thrsday and went in for a blood check on Friday. Blood check result was not good (wbc 1.9, way below normal), so the doc on duty couldn’t tell me otherwise than to keep taking the injections, which I did — and that proved a mistake. The problem here I think is that Filgrastim, the GCSF injection affects wbc only indirectly: it only stimulates white blood cell generation (the TLA stands for: Granulocyte Stimulating Factor, there it is). So bone pain comes first, raised wbc comes second… and if you show a doctor a wbc level below normal, they will have no choice but to tell youto continue with the subcoutan injections.)

One more note: Juli has this worse than me. Very quickly, my brain shut Saturday out. I do know it was a rough day, and of course I went through it, but by now I can’t remember how the pain was. She had to see the whole thing though. Support persons are awesome.

Prednisolone fun.

A funny thing with Prednisolone is one of its side effect is shaking hands — this hits me pretty hard, to the extent that I have difficulty typing on a smartphone or use a touchpad in the morning…

…and pick up a Perdnisolone pill: it’s the smallest of all the pills I take.

We figured with Juli this is probably a bit of practical joke, courtesy of the pharmaceutical industry: they give you a pill that causes your hands to shake so small it’s close to impossible to pick up with shaking hands. It’s actually pretty funny, good one, pharmaceutical industry!

So that little obscure giggle you notice when your pharmacist hands you your box Prednisolone… now you know why.

Cycle 2, 2cycle, bicycle!

Cycle 2 has officially started (what started, I’m already past the IV injections of the first week!), and what better way to celebrate a new chemo cycle 2, than to…

…2cycle!

That’s right, I dusted the old Torpado (it’s not old, less than a year I’ve had it), blew half a can of WD-40 on the chain and the brakes (not the brake shoes, no), as the last time I used the bike was on a very rainy February day when I decided to dry myself and just toss the fiets in the locker room — result is the chain being basically a rusty piece of fixed metal, an art piece in the shape of a bicycle chain… but as we know:

If it moves, but it shouldn’t: Duct Tape.
If it doesn’t move, but it should: WD-40.

But where was I… oh yes, cycle^2, cycle 2, 2cycle, bicycle, that sort of thing. (By the time I came up with this title, I had to google “bicycle” just to see how to write it. I’m distracted easily, but that’s the Prednisolon and it’s lovely side effect, sleep deprivation. Anyway, where was I. Right.)

The above picture was actually taken on the 3rd day of chemo IVs. I came home, had a good hour of sleep, then went out for a 8.3 km Giro d’IJburg. On chemo day. I had some nausea, easily managed with my friend, Ondansetron — 1 pill, when the max is 3/day. Also, I’m getting the sleep problems again (it’s the ‘roids), but the worst part of this is actually being pissed off at 3:30am on why you can’t sleep — if you accept this, maybe read or do some stuff (blog, for example, and organise your photos), it’s not that bad. Other than that, and dare I say, cycle 2 so far has been better than cycle 1.

It seems the more fitness you do, the better you take these IVs. Side note: I also love my veins, as Juli can tell: they are in pretty good condition now (chemo supposedly will impair them significantly), and I believe (and see, actually) that doing even the walks, and in general keeping blood flow and circulation up helps them a great deal. It also helps the nurses who need to find the vein for the IV if the vein is nice and thick and hard. (Yes, we are talking about veins.) So I think keeping fit is probably the most important thing you can do for yourself if you are doing this kind of treatment.

Weather’s also treating me nice these past couple of days, I did these panoramas in beautiful early summer Amsterdam weather:

And this Tinyplanet (Google Photosphere/View will be added to Google Street View soon):

IJburg skies, IJburg bikes #tinyplanet #ijburg #amsterdam #cloud #cloudporn #sky #skyporn #cycling

A photo posted by Gergo Lippai (@lipilee) on Jun 4, 2015 at 9:28pm PDT

Bottom line: sports are good. Do sports, people.

(By the way, I’m using Endomondo. You can Friend me there, and see details of my rides.)

Oh, weight status: 79.6 kg. I didn’t make the 80 kg mark as planned by end of cycle 1, but I almost did. I practically did. If my phone is in my pocket, I did. Shit, even then it’s only 79.73 kg… Maybe my keys also?…

[And a distracted Gergo walks away contemplating on weight of small objects in pockets…]

Blood is in the air, and other stories of the rest week.

Okay so I went for a routine checkup on Wednesday, all is fine, WBC is up in the skies (my bone marrow got a pat on the head for “reacting so well to stimulation” — well that’s one way to put it), but turns out my anemia got slightly worse (meaning my red blood cell or RBC count went further down, meaning my blood’s oxygen transferring capabilities were lacking). This is funny though: I’ve had anemia since pretty much the beginning of the whole thing, yet, when my treatments started, I could restart my excercises (the walks), and did a lot of things, as I mentioned earlier. So if I am this active while anemic, what would I do with a normal RBC count? (Oh by the way, for the bone pain slash WBC stimulation issue, next time I only have to inject G-CSF 5 times instead of 6, so hopefully the bone pain will be lighter.)

Anyway, by now I too, was feeling my anemia: my heart was beating like a jungle drum (roko-tokotoko-koroko-tokotontonn), I had a headache… long story short, I went in for some bloooed on Friday. I got (I think) 0.6 l (3 packages) of compressed blood (I guess just the good stuff, ie. RBCs).

As a result, I am totally fine now: all the *BC counts are normal or (in case of WEBC) higher than necessary, we had a day trip to Muiderslot today (some photos here) and Márti’s (younger daughter) 3rd birthday party yesterday where I participated fully (yay!), and in general I feel energetic.

Then, this also happened this week:

I don’t mind, truly, and for multiple reasons: first, for the past couple of years I usually zeroed my hair for the summer anyway, it’s very convenient if you do sports (with sweating and all) and I think it simply looks cool. (Yes, I do think I look cool in the summer. Isn’t that cool?) Second, I think now I can ask people (friends, strangers, the leaders of the world) for small favors, like…

Category: Text

C03D10 status – cycle 3 almost done (and some stats geekery.)

C02D08, and more G-CSF (un)fun.

Prednisolone fun.

Cycle 2, 2cycle, bicycle!

Blood is in the air, and other stories of the rest week.

One million dollars.