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!
2 comments:
Hi, my mother was diagnosed with mucosal melanoma on October 2016 (rectal primary). I regularly google mucosal melanoma and that is how I found your blog. My mom did one dose of ipi/nivo, one dose of Keytruda, 2 cycles of Abraxane (a chemo), and is now on a clinical trial of IMCGP100. I'm part of a facebook group with many other mucosal melanoma patients, including those with nasal primaries. I don't know if you will find it useful, but many people there are concurrently going through treatment as well. For me, it was also helpful to find others. https://www.facebook.com/groups/906485416088740/
This is a tough and aggressive disease, but I'm glad to hear that you have up-to-date treatment options in Japan. Good luck fighting this disease!
Hi C.D. Its tough at times but my spirit stays strong. So far the body reacting to the treatment with fever and headaches and we all hope for the best. I applied to the FB group and pray for your mom. Sharing makes the weight bearable. Love
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