wbc – Page 2 – Back in Shape

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 Aug 7, 2015 at 11:09am PDT

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!

C04D10: fun with the new side effect, and D11 preparations.

My new fun side effect goes by the name Polyneuropathy:

Polyneuropathy or symmetrical polyneuropathy (poly- + neuro- + -pathy) is damage or disease affecting peripheral nerves (peripheral neuropathy) in roughly the same areas on both sides of the body, featuring weakness, numbness, pins-and-needles, and burning pain.

What it comes down to in my case is numbness in my fingertips, more annoying than a real problem. For now, there is nothing to do, this is chemo side effect. Doctor’s advice for now is keeping our eyes open and if it’s getting worse (e.g. I become unable to type or use my phone), dosage will be reduced for the remaining rounds.

D11: tomorrow I’ll have a long day. Monday’s results showed anaemia again (C04D08 blood screen: Hb 6.1, Tr 105, Lk 2), so I’m getting blood. I’m doing my normal workouts, but have trouble doing stuff that requires brain, or more precisely: that requires my brain to require oxygen, I guess. I suspect this blogpost is ultra basic too, but I’ll go with the basics happily for now. Like “we watched Tropic Thunder yesterday” basic.

Okay, so here’s the schedule for tomorrow:

I start at the Dagbehandeling at 8:30 (ouch), to get myself cyborg’d up (okay, I’ll get a branula for the day), and to do the cross check for blood type (fun fact: they always have to do this before blood transfusion, even if your blood type is obviously known).
Then over to CT – this is exciting on its own merit (first time since the start of the treatment to actually see how much progress I’ve made), but I’ll only get results on Monday. CT starts at 10:00 (for thorax; and 10:07 for abdomen), no eating beforehand (boo).
After CT, I’ll get to eat something (yay), and then head back to Dagbehandeling, where 3 packs of blood will be waiting for me. Blood transfusion takes 4.5 hours plus tax.

So I’ll basically spend my day at the hospital tomorrow (not thrilled), and there is a chance I’ll have some bone pain starting too (G-CSF week, remember?), but on the other hand, will come back with new blood, and I suspect (from experience) I’ll be in high mode on Friday.

Oh, and: next week we are off to Leidschendam, for a mini holid(y)ay!

C04D01 status: some good news, and some more good news.

First off, C04D01 blood results, my feelings were right about me being in a good state: Hb (red blood cells) 7.4; Tr (platelets): 256; Lk (white blood cells): 5.5. The blood screen of a healthy person! Wbc probably something to do with the G-CSF I shot last Monday (but still good to know I can get it up to a normal value without too much pain), red blood cells and platelets increased on their own significantly during rest week. Yay!

Other piece of good news: I will only have 6 cycles, not 8. Not sure where this comes from (or rather: how could we misunderstand 6 for 8), but now it’s confirmed by two doctors, so I decided to believe it. Yay!

I’ll also have a CT sometime next week (tbc next Monday), to see (or rather: not see) my tumors.

This is how we roll in C04.

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.