Logbook – Km 42.195

Diagnosis tests

Today I’d like to start by describing each one of the different diagnosis tests that very Ewing’s sarcoma patient must go through. Let’s get started!

Bone scintigraphy

You must fast at least six hours before the test. A couple of hours before starting, you are injected a contrast agent that turns you into a radioactive man for a while. After two hours where you can go wherever you want, you lie down on a stretcher. There’s no need to remove your clothes or shoes. A 1-sqm pad starts approaching your face and then you ask yourself: where will it reach? It stops about 1 or 2 cm from your nose, so you’re unable to focus your eyes on the pad. Afterward, this pad scans your body slowly, from head to toes. After 15 minutes you’re done. The contrast agent accumulates in cancer affected bones, and this is shown in the images.

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MRI – Magnetic resonance imaging

In order to make this test, you must get undressed and wear a paper gown. As you’re going to be exposed to strong magnetic fields it is very important to remove any ring, piece of jewelry, piercing, watch, etc. I was also told to fast a minimum of 3 hours before the test. You lie down on a stretcher, and get a shot for installing the catheter you’ll be administered the contrast agent through. You also get headphones. In Switzerland, there was some elevator music being played, but here, in Spain, they only work as noise reducers, who actually don’t work properly. Then they press ▶ and the cheap-and-load electronic music CD starts being played: track after track. It reminds me one of these old-school modems all of us has had someday at home, yet a little bit hoarse. I like to think this way 🙂 the test takes around 45 minutes and the noise, that sometimes is so loud that doesn’t let you think, takes a break every three minutes, approximately. This is the reason why I compare it with a CD. When the symphony starts again, it has a new melody. I guess that’s because it’s making a different measurement. One should take with fun; otherwise, you can get crazy in that tunnel. I close my eyes and think that there’s less and less left to finish that torture, unless there is a bonus track, ‘lol. The patient’s satisfaction degree depends on the condition of suffering from claustrophobia and of the region to be explored. As my feet were facing the machine, my whole body didn’t enter the tunnel –they focused on the pelvic region- it was a much less stifling experience.

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Echocardiogram

This one is, without any doubts, the easiest and the less invasive test of all. This test is necessary to evaluate if the chemotherapy has damaged your heart or not. A nurse puts you some electrodes on the back and then the doctor tells you to lie by the opposite side to the screen. Then, as if you were a pregnant woman, the cardiologist smears your chest with the gel that helps ultrasounds to go through your skin, and then sweeps it with the emitter and receiver head. To be honest, I totally disliked when he pressed it to the ribs and moved it side to side. This reminds me when, in karate combats (kyokushin kumite), you got distracted for a tenth of a second, left a small gap in your guard, and got a sita tsuki (a kind of punch) as a gift right on the ribs. In such a situation, it doesn’t matter whether you are relaxed or not, if you are thin it’s gonna hurt you and you’ll become furious. It takes about 10 minutes.

CT-scan

A computer tomography scan is a quite quick and easy test. If it were radiation-free (x-rays), I’d put it first on the list of the least traumatic tests. One must fast six hours, at least. No need to remove metallic pieces, contrary to the MRI, but one must free the region to be irradiated from objects that could interfere with the image, such as buttons. You lie down on a stretcher and get a catheter installed normally on the left arm because the pump lies on that side. Then you should put your arms straight right on your head, and when a robot voice tells you to breathe and hold air in the lungs, you just obey. Suddenly, the stretcher slides through the arch, back and forth. Then you are warned that they’re gonna pass the iodine-based contrast agent through your catheter. All of a sudden, heat invades your body. You feel that everything inside you burns: head, chest, feet, and genitals. Fire!!! A friend of mine warned me that she even puked due to the heat. Fortunately, this feeling only lasts a couple of minutes.

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PET-CT scan

It is a very similar test to the previous one, but with some significant differences. For instance, in this test the contrast agent isn’t iodine-based, so you don’t feel the heat inside your body. The FDG (fludeoxyglucose) is a glucose (sugar), the kind of thing that tumor cells love, which are the ones having the highest metabolic activity (high consumption of sugars for cellular division). The PET-CT scan uses positrons apart from X-rays to take pictures of your whole body: from head to toes. It’s the Queen of diagnosis systems and I’m very proud that my wife is both nurse and technician of PET-CT systems. They give you the contrast agent at least one hour before the test, and they let you relax on an isolated armchair since from that moment on you become radioactive. It’s important to pee before the test because urine shines in the images and causes interferences.

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Below, you can see my shiny bald head in the room where I got the radioactive contrast agent. This pic is amazing, hahahaha! I’m only missing the straitjacket, ‘lol.

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My own marathon result

Thursday May 18, day 181, was a key day. And I don’t say this because it was six months and a day that I was diagnosed the illness, I say this because my doctor was going to give me the results of the diagnosis tests that I was made during the previous two weeks. I can’t deny that I was nervous. I woke up around 5 a.m. and couldn’t sleep again. The blood test was at 7:24 a.m., then back home, having breakfast, resting a little bit and back again to the hospital. There, my mom, Nathália and I met Carla, Nathália’s mom, and all together headed to the waiting room. In the doctor’s visit with the surgeon-traumatologist -yes, the same one that told me to do the cyclist while laying on the bed-, he remained open-mouthed when he saw me sitting on the chair without any orthopedic cushion or any pain. He programmed a new visit for November and went back to the waiting room because, apart from receiving diagnosis and treatment, you must WAIT a lot at ICO. The doctor’s visit day you can’t make plans, cause you know when you enter the hospital, but not when you’ll leave it… Anyway, after ca. 40 minutes delay, I was called in and doctor García del Muro welcomed us in his office. The news couldn’t be better: the mets at lungs couldn’t be seen at the images, and the soft parts of the primary tumor had reduced in size almost totally. Only a little spot of activity could be seen on the bone, but Mr. Ewing’s days are numbered. Apart from that, they couldn’t see any damage to the heart muscle. That was something I was scared of, because of the doxorubicin. Some tears dropped from my mom’s face, but I decided to keep them inside for some months.
To be honest, I already expected this piece of news. Because of what Dr. Martin told me in his last visit, and because it was my wife the one who made me the PET-CT scan the previous week. There’s nothing like first-hand news!

When you look for the word happiness in the dictionary, this image could certainly pop up:

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After the PET-CT scan, I was waiting outside of the room for them to tell me something when a nurse came to me and sent me to the lockers. Suddenly, Nathália broke into the lockers, tears in her eyes: the radiologist had just interpreted the images. It was another of these magical moments that we’ll never forget. And that moment culminated with a warm hug until the door opened and Nacho took a picture of us. What a joy! 🙂
A couple of images worth a thousand words:

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The image on top corresponds to a plane of my pelvis and was taken on November 2016. The image below this one corresponds approximately to the same plane, but on May 2017. The bladder looks very shiny in this last image because I forgot to visit the WC before the test :S The shine on the upper image means a high tumoral activity in the ischium, that spreads to the soft parts. In the lower image, it has almost disappeared. Apart from the weight gain -my slice perimeter has increased- this picture shows how I feel today: yes!!! I’m not gonna hide it: I’m a POSITIVO man!

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Treatment changes

In my last post I told you that I’d have a chemotherapy break, but in this last visit I was revealed that, since the outcome was so good, I’d have simultaneous chemo and radiotherapy. So now I can already forget about this pause, for the sake of total healing.
I’ll have 29 radiotherapy sessions of about 10 minutes and the consolidation chemotherapy will consist of:

  • 1 VAI cycle (Vincristine, actinomycin D, and ifosfamide).
  • 7 VAC (Vincristine, actinomycin D, and cyclophosphamide).

Each cycle will last 3 weeks and, during the first two, as they’ll overlap with radiotherapy, actinomycin D will be removed. The secondary effects of the two new drugs are:

  • Actinomycin D: it can cause liver problems, rash and/or skin reddening.
  • Cyclophosphamide: it can irritate the bladder coating, which may cause bleeding.

The main of the advantages is that instead of being hospitalized for 3 days per cycle, I will stay on an ambulatory basis during 2 days, so I’ll be able to sleep at home. And I’ll be left the port-a-cath needle on so that I could have intravenous Mesna, yeeees!

Besides that, the blood test on Thursday, May 18, showed that I was at 900 neutrophiles/uL and the following Monday at 960, so until next week I won’t be able to start…

Besides that, I was proposed to take part in a clinical trial where one gets 9 4-week cycles zoledronic acid during VAC chemotherapy and I accepted. I’ll make everything in my hands to improve the treatment of future Ewing’s sarcoma patients 🙂

In future posts, I’ll explain how the radiotherapy + chemotherapy combo is going.

Acknowledgements

Mark, an Irish colleague from my times at ICFO (the Institute of Photonics Sciences), a good friend that now lives in Buenos Aires, made his promise true and donated his blood. And he made it in grand style: posting a picture mosaic on FB! Thanks, Mark! You’re worth your weight in gold!

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Thanks also to Mad Juan for his beloved trophy, and Emilio and Román for the obi, and Mike and Míriam for the wine, and to my EPFL colleagues, that approximately one and a half months started their participation at the Tour du canton, a race every Wednesday at different spots of Neuchâtel canton. Not only they have signed in, they’ve made a team called “¡Vamos Dani!”, in the same style as ¡Vamos Rafa! – they know that I’m a fierce fan of Rafa Nadal. Last Wednesday, May 24, day 187, they ran the last race. Next week I’ll make a post exclusively for them because they deserve it! And thanks to my family, to all of you who think of me, pray for me and send me your positive vibes. This is working and now it’s proved! I love you!

Images source: National Cancer Institute

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3 thoughts on “Logbook – Km 42.195

  1. Wonderful news! I am really pleased for you.
    Your story has a lot in common with my 10yr old daughter’s. She is having chemo (IE and VDC) and is also half way through 6-weeks of radiotherapy. She is very tired but doing well, and I’m pleased to say that her tumours are shrinking too.
    Best of luck, I like reading your news.

    Like

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