The day after the second Opdivo infusion

Yesterday was a very predictable day. Enough time for power naps during the long train ride, long waits and a long infusion. I had a comforting talk with my oncologist in a mix of english and Japanese as I had come alone. ALP levels are very high, but red blood cell levels are coming up again. I explained him about the increase in pain in the ribs and about the rashes on back, stomach, chest and arms.

According to cancer.org, pain in the affected bones is the worst at night when you don't move, and less when moving around. For me it is the opposite, so I am not so worried. And for the skin, there is no itch as long as I don't accidentally scratch it so I asked for a prescription for some cream. The itchy eyes are probably caused by the rash on the eye lids so he prescribed eyedrops to keep the eyes moist.

This morning I woke at 5am with pain in the ribs, and eyes refusing to focus. The head was very heavy and the neck stiff. Nothing really serious but its easy to link everything to cancer or side effects of Opdivo. I wrote my bro's and sissies that I refused to follow that mental path, and decided that various normal root causes could also be the origin of pain, like lack of exercise, normal infections and dry air. So the Japanese bath is the treatment of choice, soothing the stiff muscles and red skin. I apply vaseline on a super itchy sore on my back.

And so the 2 weeks after my second treatment commences with positive mindset. When I have the energy, I read metastasis stories on the FB site of Mucosal Melanoma Warriors which helps me prevent sticking my head in the sand and face the reality of this disease. Giving support to others makes me feel good and sharing my experience surely helps others based on the feedback. The story of the 2 terminally ill men in the hospital comes to mind. Wishing everyone a great day!

The 1st week

The first week started with fevers and tiredness. The heavy head was probably still radiation related, but possibly not. After a few days it all settled and I could slowly buildup my stamina by walks, yoga etc. it took about a week to regain my health.

I joined the melanoma warriors fb group to get into touch with patients and care givers in the same situation as me.

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.

Radiation effects

The last proton beaming treatment was on 13 April. The radiation had its immediate effects on the skin which took 6 weeks to heal. Now the internal hardness is gone in nose and sinus but the heavy head sensation is getting worse. It's not a stiff neck I thought at first.
The first pain attack happened during a business trip 2 weeks ago, and I recovered after a long antibiotics treatment. Now the pain attacks are back, and the only way is to take painkillers.

• Swelling behind eyes and painful drainage in left eyebrow. 
• When leaning over or coming up fast there is a lack of blood in the head and I am dizzy for 10 seconds. 
• Waking up at 3am with sharp pain behind the eye. 

I do yoga 3-4 times a week to keep neck and back flexible an maintain core strength, but still can't do any position with head below the heart.
It's bearable but it will be difficult to identify after starting Opdivo, if this or other pain is a result of radiation or new immunotherapy. I just need to take enough rest and let the body get used to the new medicin to minimize side effects.

Strontium-89 therapy, Opdivo

Today I am in Tsukiji NCC for pre-check-up for the strontium-89 therapy. I received an injection with Strontium to see where it is absorbed.
Next I had skeleton scintigraphy, using a CT Scanner, which is a special type of nuclear medical procedure that uses small amounts of radioactive material to diagnose and assess the severity of a variety of diseases, including cancer.
3 months after this therapy, Tumor to non-Tumor ratios (T/NT) are calculated, as well as changes in B-AKP compared. This therapy is not a cure, but it reduces the damage of bone cancer. Afterwards immunotherapy is required to trigger natural immunity to further eradicate the cancer.

Based on a research article (2004) on effect of strontium-89 therapy, bone lesions (damage) decreased by approx 50%. However, the doctor explained that this treatment is primarily to reduce pain, not for tumor treatment. He also explained that the side effects could be very severe and long lasting: loss of white and red blood cells. Those are the cells I need most when kickstarting my immune system!

So it was decided by Namikawa-sensei to start with Nevolumab (Opdivo). So next week Monday 21 Aug I will get the first injection, and will go home afterwards. MmI don't want to stay in hospital as the side effects are not severe. Better stay at home and relax, walk a bit outside, instead of tethered to a bed, and listen to other people who have cancer and try to be quiet.

This time it's for real, no other treatment options anymore. Just get on with life, stay in shape and enjoy daily activities. I will let the body fight if after 3 months results are not as expected.

Coming to terms with cancer

Learning to live with cancer and describing the feelings I have, is how I come to terms with cancer. The shock of the realisation that life will soon come to an end has to be dealt with, one way or another. Without emotions how can I give it a place in my life?

I cannot always switch off my emotions. They have a purpose, they are a tool to handle a situation which cannot be comprehended the moment it occurs. As is the case with any human (I guess), I need time to find reason, to find purpose, to give it a place in context of all other learnings in the past and insights or information freshly obtained.

Emotions can disrupt the balance of life of loved ones around me when dealing with the same realisation that life of a loved one (me that is) may suddenly come to an end. It is therefore important to shield loved ones from excessive emotional outbursts and handle that within oneself. This is not an easy task and I prefer to do this through calm thinking in solitude.

Finding the meaning of the effect that cancer has, in all aspects of life, is key to permanent recovery. Balance must be restored and retained between mind, spirit and body. It's important to create benchmarks for stamina before and after key treatments. Every time a treatment is coming to a stable stage, it's important to measure the gap with the state before the treatment.

Cancer attacks the body. My mind is subject to imbalances due to medication, radiation or other chemical reactions like diet. My spirit can remain healthy, but it requires great and continuous mental effort. As long as my spirit is healthy, positive and strong, it provides the motivation to close this gap in stamina and provide this as the short term target for the mind and body. Such goals are important to restore my health completely.

There are many moments that my spirit feels weak. Its important to gain access to, or create sources of motivation. Motivation comes from love. It's that simple. I don't lock others out and continue to communicate, smile and try to stay positive. It's hard at times, I know, but it helps all around me to feel they can help me in their own way. Help or support to my loved ones is a great indirect way of helping me. My son needs a listening ear, or just a warm meal. My wife needs words of encouragement.

To reduce stress of work or livelihood this includes talking to superiors, and Human resource managers. To reduce stress at work, decide who to inform and who not. There is no need to inform all. To learn how you think, and how you deal with situations, write it down in a blog. It provides a record to review later. To reduce stress of loved ones, use the blog to update them. They can also use it as a reference when in doubt.