The first Opdivo session

The early rise to get to hospital by 8:30 was easy. My son accompanied me and we had to reschedule trains due to an accident. We were still on time though with remote route planning of my wife, expienced in typical Tokyo life.

The blood test required 10 samples, everything is being monitored. Waiting for my doctor to get the test results took more than an hour, and basically there were no serious issues except that my red blood cell count is low so I need to support that with my diet. Dr Namikawa asked if I had no pain, and I re-assured him that I had none. He looked so surprised. I asked him about side effects like itch and he said that would possibly start much later (weeks). He kindly gave me his e-mail in case I had any concerns with side effects. I promised him not to mail unnecessarily.

The nurse running me through the procedures, gave me a contact number of the Opdivo support team in the ward which I could call anytime. So with the e-mail of my doctor (in English) and this Opdivo help-line (in Japanese) I feel confident of getting my questions answered in order to manage my worries and fears.

The Opdivo treatment will have to be taken twice a month, for 3 months and takes 1.5 hours. Sitting in a reclining chair in the outpatient oncology ward, the needle was smoothly but painfully inserted in a thick vein in the wrist, and I went through 4 liquids: anti-allergy, water, Opdivo, water. The bottle of Opdivo took and hour to empty. The nurse explained me in a flood of Japanese to come earlier for the next treatement, to time the test and treatment more efficiently. The nurse removed my needle, asking me how I felt and I realized that the nap during the treatment had given me a neck ache from the bad position. I reminded myself to bring a better neck rest next time.

We walked in the heat of the day to take the bus back to Tokyo station, and got a seat in the train home. I felt great, except a little weak with a nagging neck ache for which I will visit a masseur tomorrow. After getting home I slept and enjoyed the Japanese bath, always on standby. Another joy in everyday life here.

And so, after surgery and radiation, my next or last battle has started with Opdivo treatment as the high-tech chemo artillery. I am confident this will work, and send Melanoma back into hiding. I still have the hope that I will be fully cured even though it is so aggressive. Living everyday life with Melanoma is also critical to accept as a worst case scenario, and makes the battle easier somehow. As I read somewhere: 'It cannot be cured, but it is treatable!' So be it.

As my sisters keep reminding me: Enjoy the small things in life to motivate yourself, to stay positive in mind, in order to fire-up the spirit to continue fighting! Overcoming strife is then no longer an option, it is inevitable!

Opdivo, starting tomorrow

Nivolumab (Opdivo) is the immunothrapy of choice for metastized melanoma (in the bones). When reading through the few cases on-line, there is not much enlightening information. Most reports are: no cure, but pain and bone deterioration is treatable. It all depends on how early the detection was.

I was diagnosed with metastasis in the spine almost immediately after radiation therapy was completed, but in a matter of months it has spread already to spine, ribs, hips, upper arms, upper legs.

So what to think? How to give this battle a stage in my mind? What to expect? What are the first recovery symptoms to look out for that Nivolumab catches on? What are the symptoms that it doesn't?

There are no definite answers as every patient reacts differently to Nivolumab. All articles and blogs on melanoma sites are quite old. Many have bursts of activity followed by the dreaded 1 or 2 years of silence which can mean anything. The patient support site of Opdivo are mostly lists of possible side effects and tables to keep track of them duing my own therapy.

Have trust in medical technology, trust in God, pray and live a healthy lifestyle. Drink a lot, regular exercise and yoga, steam a lot to keep the area of surgery in nose and sinuses moist and rest. Also I have the advantage that my boss took over my most critical tasks. There is work to do, but delays are acceptable so no stress, and it's ok to rest enough.