My experiences after the first chemo

[(WARNING)] this blog tells my actual experience with chemo and related allergic reactions, and may be experienced as shocking. 

Bad side effects

After returning back to normal life, my body didn’t feel right and my nausea didn’t go away. It started getting worse until I also started loosing appetite and loosing weight. After 10 days my hair started falling out, except for my white ones. I suddenly was nearly bald…

These side effects were all pretty normal, just a bit annoying as I had prepared myself mentally. The bit I couldn’t understand why I felt so weak and why my weight kept falling. We contacted my doctor, who prescribed stomach relaxant and steroids to reduce the side effects.

They helped and I could join for breakfast again, even going out to a coffeeshop and have a first latte in 2 weeks. Ah it tasted so good. The accompanying orange juice was the killer of the fun as I felt my stomach complaining.

That breakfast was the last normal thing I ate from then on. My body went into lockdown. I mean multiple organs started to be affected by my body’s rejection of Yervoy, the new type of immunotherapy given to me on 22Oct.

The total rejection was a surprise of my doctor. I was the first. When looking in the reference book, I had now developed all possible side effects in the list, and was rapidly loosing all muscle strength till I couldn’t get up anymore in bed.

Halfway point

The last 6 days were like an experience with a slow ticking clock. The Ipi/Nivo infusion was doing its job in killing melanoma cells but at the same time caused bad nausea, intestine trouble and jolting backaches. Everyday was a different combination, with radiation headaches coming and going. It seemed it would never end. 

Today I am going for the fifth radiation, and my body feels slightly better. Halfway point! Anything positive to hang on to…

Taking part of daily life by visiting the hospital somehow grounds me in reality; sitting in crowded trains, running to catch a bus which closes its doors in front of my nose... Life continues, peoples lives continue around me. So much news appears to me completely meaningless when I see the suffering in the eyes and posture of patients and caregivers. Everyone is bravely carrying their own hidden cross.

What is this type of cancer difficult to handle, both mentally and physically. It’s sleeping for months and catches me off-guard when it appears again on scans. I somehow came to terms that this is a companion for the rest of my living days. The amazing immunotherapy developments to inactivate the melanoma cellular attack mechanism is saving me time and again. 

But still… it requires a special mindset, patience, while letting Peace of God overcome my fear for the unknown. It provides for a safe haven, where I am blessed with hope. This hope is the shelter for the storm I am in.

Prayers from all of you have helped so much, and I want to thank you for that. Without you, my loved ones, it would be impossible to get through this with a stable and strong mind. I feel strong because of your continued support. 

Today is the birthday of my daughter, and I feel ok enough to join the diner to celebrate. Next week my son will start work after he halted his master studies. Startup engineer for ASML, covering all semicon factories in Japan. A bright future lies ahead for both of them, and I feel so blessed to be part of it…

A burst of blue light

The first shot of 10 minutes radiation was over before I noticed. After my head was pinned down by a mask. I had to control my breathing and urges to break free. A CT-scan had to be made again to position my head. The explanation was complex and I couldn’t follow it, so while I thought the scan was still whirring away, a blue light appeared a few times.

That was it. It left me feeling light headed and while leaning over to tie my shoelaces, I felt disoriented. Talking to the radiologist didn’t help much as he told me I would loose all my hair. Cheering me up would have helped a bit. Anyway, I had infusions on my mind and went on to find the office of my trusted dr Namikawa.

It was not his outpatient day, so he met me rather unexpectedly. I had expected his nurse to tell me the results of the blood test. The blood results were very good, even my anemia had disappeared with consistently taking ion supplements. Body was strong from walking, yoga and (small) weight lifting. Except from my facial palsy I felt like nothing was wrong with me.

The infusions would take 3 hours! It sounded a piece of cake, but after I had slept through the first 4 bottles, and still had 3 full ones to go I felt rather lost. The apps from my support team in Holland kept my spirits high, even though I couldn’t reply much with the IV holding my right arm down. I did have plenty of time to think about life in all it’s beauty, and how important strong, loving bonds are.

While waiting, and waiting, I felt nausea coming up and was not ready to go home. I tried to eat something and only the trusted apple juice helped keeping it down. After a short nap, I finished some more, and asked my daughter to pick me up from the station. With that motivating thought, I hopped on the bus and changed to the rapid train at Tokyo station.

Walking home in the rain, sharing an umbrella with my daughter, made me forget everything and soon I enjoyed the Japanese bath and a warm comfy bed. The side effects of Yervoy can be pretty bad, but for me the next day wasn’t too bad. Actually I woke up with the feeling nothing had happened the day before. That’s the thought I held onto, and it went pretty smooth.

Only 9 more bursts of blue light to go, and with a bit of luck the nausea won’t not be too bad…

A new chapter

My hope that the good progress made in the April scan would continue has been dashed. 

The follow up scan in July was all clear, and it felt like a new life had started. The decision to stop Opdivo was made and after 6 months of infusions I was free from regular hospital visits. What a relief that was in the heat of the summer.

The scan made in October showed that a bunch of tumors had reappeared in the fluid inside the ventricles of the brain. This fluid, also known as cerebrospinal fluid (CSF), flows through the ventricles, around the brain (meninges) down into the spine. 

As I explained in previous blog posts, the tumors in the ventricles were removed by pinpoint precision using the cyber-knife. This time this method is not an option due to the size and multitude of tumors. The only remaining treatment is full-brain radiation, combined with immunotherapy to prevent possible growth of spreading melanoma cells in the rest of the body.

Sounds like a good plan right? It does to me, were it not that this the last possible treatment. If the melanoma cells don’t react to this… This thought haunts me at night... Peace of mind comes soon after as I trust in God to guide me and make it work as he did so many times before. Let’s pray for that.

The treatment goes as follows: 

• Starting tomorrow noontime I will get a daily dose of radiation of 10 minutes, for 10 days. Friday 5th November is the last day.
• Tomorrow I will also get an cocktail infusion of Yervoy/Opdivo, lasting 2 hours. It is stronger than Opdivo alone, and is followed by a second infusion on November 15th. Ipilimumab and Nivolumab. Beautiful medicine names… patients call it Ipi-Nivo for short. 

Side effects are probably mild for me, including stomach upset, nausea, loss of hair, and tiredness. I plan to work in the morning to keep my mind occupied, and visit the hospital in the afternoon. Previously I stayed in a hotel nearby but that didn’t exactly cheer me up, so I will travel up and down this time (approx an hour from our house) 

The next scan is planned in January, so we’ll have to sit tight till then. Christmas will be a time to reflect on the gift of life. Wish me luck, and let’s pray together for easy side effects and good results! 

The last treatment

 I had a chat with dr Igaki, my radiologist for the cyberknife treatment. Muscle pain, nausea, and questions about having a haircut were all answered. Got some medicine to keep the nausea at bay, and some reassurances all side effect would disappear in a few days. He chatted in English, and made me feel very comfortable. I now eat 5-6 times a day, as my wife said, it’s the same remedy for morning sickness.

I will have to come back every three months for MRI, and every month for Opdivo infusion. They expect the tumors to be gone in 6 months so let’s hope for the best! Life will continue as before, with a positive mindset and living day by day. No long term planning anymore, as this melanoma will stay with me forever. It just sleeps.

30 minute radiation, lying still while listening to the piano play. The robotic arm makes funny sounds while repositioning itself to beam another precision shot. It sounds reassuring, my eyes closed, having trust in Japanese technology and the beautiful mind of my radiologist.I am in good hands.

Cyber knife after restarting Opdivo

 On Monday we went to see my oncologist to discuss the findings of the MRI. He had made an appointment for us with a radiologist to discuss the path forward with radiation. Like a lamb ready to be slaughtered I followed my wife to go and listen to the dreaded side effects. 

I listened and watched the screen. The friendly radiologist used his best English, and when it became difficult he switched to Japanese. The location and exact size of the tumors (the big one is 13mm) would require 5-7 treatments, and we should start as early as possible. The big one was next to the brain stem, and if it grew further it would start to affect my motion. (Throat, tongue etc.)

We agreed to start on 25 Jan, even though is would coincide with my daughter’s High-school entry exams. When we asked if we could start a week later, he became evasive and looked at the dates of the scans. The tumors had grown from nothing to this size in only a few months.

We went for fitting of the mask to position and keep my head still during treatments. I had done this also for Proton beaming, so I breathed consciously and opened my mouth as it was all covered with thermally hardening warm plastic. The claustrophobic moment passed, and a CT-scan was taken to mark both head and the mask to achieve 100% precision with the ‘knife’.

The nurse whispered sweet English words in my ear to relax me, which was so sweet. I thanked her when we left to meet up with my oncologist to decide when to restart with Opdivo. He had confirmed the year before that restarting had proven to be effective, so I wasn’t too concerned. 

To keep the story short, I restarted with monthly Opdivo infusions on 22 Jan. What we learned from my first clean-up surgery and Proton beaming treatment, is that melanoma is very aggressive and spreads immediately through the blood stream when being treated. Preventive Opdivo will prepare the immune systems for that and kill the melanoma cells before they can do harm elsewhere in the body.

The infusion always leaves me groggy due to the preceding 50ml anti-allergy infusion. After the bus and train ride home, I went to sleep early as my body showed signs of fever and other side effects like racing heart beat and lack of appetite. 

A rough night followed with short waves of sleep and I hit my head looking for something in the kitchen. The unforgiving kitchen cabinet door left a bleeding mark on my head. Why now I thought.... I imagined vividly that the cyber knife will be positioned exactly over that red marked spot.

Now that I am writing this, I had a nice coffee and will go for a walk soon. As always a new day has come, new treatments and new energy is flowing through my body! Thank you all for the great support and love. It really helps me through these difficult times...

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!

Options for treating Melanoma with medicines

1) General Chemotherapy (Interferon and the like)
Interferon is used in stage III, not in stage IV.
It is said to extend life, but is 'brutal' because of side effects.

2) Immune Therapy (for specific cancers, as highlighted on each website)
Objective is to make white blood cells recognise the cancer and fight it naturally.
The drugs remove signals that stop white blood cells to do its natural job.
Drugs are available now but are not covered by insurance:

• Merck/KEYTRUDA (Pembrolizumab): FDA approval 5-Aug-2016, 2,250US$/vial (see prices)
• Bristol-Myers Squibb/OPDIVO (Nivolumab):  FDA approval 17-May-2016, Japan Govt. approval 17-Jan-2017!!!!,  2,400US$/vial (see prices), Latest news***
• Bristol-Myers Squibb/YERVOY (Lpilimumab): FDA approval 25-Mar-2011, 7,000US$/vial (see prices)

Warning: The sites of each drug provide alarming warnings for side effects due to white blood cells attacking healthy organs. Quite disturbing and a cold shower for growing hope....
However, according to my oncologist, the side effects are mostly mild and are caused by over-active white blood cells, which may cause hormonal changes. These side effects can be treated with medications.
My oncologist also mentioned that there are 'exciting' cases known where treatment was stopped due to cost, but the white blood cells continued to recognise the cancer and continued fighting. It was as if the body just needed the trigger given by the first dosages.

3) Medicines for known Melanoma gene mutations
Over 75% of melanoma patients have a mutation in one of three areas: BRAF, NRAS, or c-Kit. Shutting down the activity of those mutations may mean killing the tumor cells.
The fact is, we have drugs that block c-Kit (drug: Gleevac), and a BRAF blockade has just been submitted for FDA approval.

4) Research on new Melanoma mutations
A study in Harvard Stem Cell Institute is making progress in mapping all gene mutations.
Their research is very exciting:
"Stem cell researchers at Children’s Hospital Boston (CHB) have taken two important steps toward the development of a new way of treating melanoma, the most virulent form of skin cancer.

In two letters featured on the cover of the March 24 edition of the journal Nature, the researchers, led by HSCI Executive Committee chair Leonard Zon, MD, report isolating a gene that hastens the growth of melanoma tumors, and using an already approved drug, in combination with a drug now working its way through the federal Food and Drug Administration (FDA) approval process, to uncover new potential therapeutic targets in melanoma. Zon is also a professor in Harvard University’s Department of Stem Cell and Regenerative Biology and heads CHB’s stem cell program.

Zon said his group is now waiting for FDA approval of a drug that blocks the function of the gene BRAF, which has long been known as a melanoma promoter. “We’re planning on starting clinical trials at Massachusetts General Hospital and Dana-Farber Cancer Institute within six months of that approval,” he said.

The path toward the new findings began in 2005 with the development in Zon’s lab of a zebrafish model of human melanoma, Zon said. It was further accelerated, said Richard White, PhD, lead author of the paper and a postdoctoral fellow in Zon’s lab, by researchers’ use of novel genetic and chemical approaches — including drugs already approved for other purposes — that are uniquely available in the zebrafish system.

In the White letter, the researchers report that early in melanoma development, the BRAF gene causes the cells to become more “progenitor”-like, resembling a type of embryonic cell called neural crest stem cells.

“We asked what happens in the early stages of melanoma to the cells that acquire BRAF mutation,” White said. “We figured out that one of the things BRAF does is cause the animal to have too many embryonic-like neural crest cells. So we developed a chemical screen to find molecules that would suppress neural crest cells.”

The researchers screened a library of 2,000 chemicals in zebrafish embryos to find ones that eliminated these neural crest cells. “We look for drugs that are used for something else, and ask whether they can then be used” for the disease being studied, White said. The advantage of this strategy is that if a compound that is already FDA approved is found to be effective in initial studies it can be moved directly to human trials. In this case, the chemical, called lefunomide, was previously approved for treating rheumatoid arthritis.

By combining lefunomide with a drug awaiting FDA approval that blocks the BRAF gene, researchers magnify the effect of two drugs that, administered alone, have a smaller effect. Together, said White, the drugs completely knocked out melanoma in several human cell tests, and reduced tumor size in melanoma cells transplanted into mice as well."

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