Purpose of this blog

My name is Cor and this is my story dealing with mucosal melanoma (MM) in my nose which was diagnosed on 10 Jan 2017. I am married and have 2 kids, aged 22 and 12. I write and update this blog to reach out to all my loved ones far away with updates and my state of mind and also to share information with other patients. Summary of what happened so far:
6 Jan'17 : surgery in Singapore to remove a polyp, Melanoma is discovered
16 Feb'17 : maxilliary sinus and nose surgery in Singapore to remove Melanoma from nose and left sinuses
1-19 Apr'17 : proton beam radiation (5 sessions) in Kashiwa Cancer Center Tokyo
1 May'17 : starting work again (part-time)
25 May'17 : MRI scan finds possible metastasis in the spine
1 July’17 : Move permanently to Tokyo for treatment.
7 Aug'17 : MRI/PET scan, cancer in sinus and nose is gone! Melanoma has metastasized in the spine and other bones
9 Aug'17 : Melanoma specialist in Tsukiji Cancer Center proposes treatment for bone metastasis: one-shot strontium drip, followed by check-up after 3 months and then decide on Opdivo. Admission tests: blood, X-ray, CT-scan, ECG test.
14 Aug'17 : Strontium IV is not suitable for me as I have no pain. Also because the short/long term side effects are bad for the bone marrow.
21 Aug'17 : Start 3 months immunotherapy. 6 infusions of Nivolumab (Opdivo)
30 Oct'17 : CT scan, priliminary diagnosis of treatment effect, continue with Opdivo as there are many grey spots (tumours).
1 Nov'17 : Decided to start a new life. Erasing the past in my mind and focus on living life as it should be lived: once. Enjoy the small things.
13 Nov'17 : CT-scan shows all tumours have reduced in size: brain, liver, left kidney, spleen, spine, etc. Start 2nd set of 6 infusions.
25 Jan'18 : CT scan shows shrinking tumours, ongoing repair in bones and a new swollen lymph node. Start 3rd set of 6 infusions.
1 Feb'18 : Start working full-time. Energy is restored.
5 Apr'18 : The detailed report of the CT-scan is not in yet but the oncologist said it looks good.
10 Apr'18 : My radiologist is very positive that primary site is clean. Metastasis is also shrinking continuously, so he is convinced I will make it.
19 Apr’18 : Detailed CT-scan report, infusion no18. Continue infusions for another 1.5 year (probably).
11 Jul’18 : CT-scan looks great. My radiologist is so happy to see us and says a miracle has happened.
18 Oct'18 : Blood is normal. CT-scan shows continuous shrinking of tumors, infusion no30. Keep on going!
Jan'19 : Blood is normal. CT-scan shows continuous shrinking of tumors.
Apr’19 : Blood is normal. CT-scan showing same continued progress. Some spots in the lung will need confirmed in the next scan.

Saturday, May 11, 2019

Bones and lungs are clear!

Today was a stressful day as I went for a PET scan and had to wait hours for the results. The few hours seemed to take so long! Finally we met dr Namikawa and he smiled relieved and showed us the images of the lungs and bones. Almost clear!

All the activity in the bones could no longer be observed in the PET image. The spots in the lungs were not active on the PET image and had shrunk visibly on the CT image. That means it was a normal infection. 

We will have to wait for the detail PET/CT analysis report in 2.5 weeks. The doctor decided to continue with the Opdivo treatment and see the result of the next scan in July'19. We also agreed to sign-up for a clinical trial of a new drug as a back-up in case the CT scan in July is bad.

Great! The bones are clear, and I have options for treatment. I feel so relieved and prayed to my Father to thank Him.

Friday, May 10, 2019

Making sure

Yesterday I went to hospital to meet my oncologist and get my regular Opdivo infusion. It’s already #43, and it’s comforting to feel that my immune system keeps getting the support it needs to fight Melanoma. The Melanoma Facebook group family keeps loosing members who I shared fear and hope with.

This is a difficult sickness to fight, that is clear, but hope is growing as there are also cases of up to 7 years survival. I am now in the ‘2 year survival team’, and can be of help to many newly diagnosed patients. This family feeling helps so much, because what is shared is latest information and first hand experience.

My oncologist decided to take a PET scan and I opted to get it done ASAP, meaning today. The scan will be clear if the spots in my lung were a normal infection. It will also provide information on why the pain in my shoulders is not going away. Let’s see.

I started fasting 4 hrs before the contrast fluid will be injected at noon. The scan will be taken 90min after the injection, so that the cancer cells will have had ample time to munch on the sugar, and as a result will light up on the scan.

I will meet with my oncologist after that to discuss the result, and he informed us yesterday on the options available if it appears to be metastasis in the lungs: switch drug to YERVOY by end May, join a clinical trial with a new drug, or increase frequency/dose of OPDIVO.

I am grateful to live nearby the hospital with the best specialists and the most advanced treatments. Early diagnosis increases survival rate drastically. Pray for good results today!

Thursday, April 25, 2019

Good news!

Today we visited Dr Zenda, who is my radiologist. He has a very different character than dr Namikawa, who is more reserved, and usually gives us a lot of information from different angles until we deeply understand. The same is the case this time, and he gave us a clear picture of where we stand.

Dr Zenda’s answer: the nose and sinus area is under control. Aspiration pneumonitis is a candidate for the spots in the right lung. These usually fade after 1-2 weeks. Another CT scan is required after 3 months to confirm the real origin of the spots. The chance is 50/50 that it’s a new tumor. Problems after proton beaming occur usually within 6 months. Stable treatment is assumed after 1-2 yrs like in my case.

So my confidence is restored, and serene calmness has returned. I am aware that such events increase my self confidence, as the next time I will remember and will be less worried. Trust and hope are intertwined, and lead to confidence that all will be fine in the end.

Time for a beer and a holiday!

New findings in the lung

After 16 months of stable progress, I was somehow made to believe that I was recovering well. It’s not easy to receive a report that new metastasis have been found in the lung. I was completely taken by surprise and it took several hours to completely sink in.

My mind still can’t come to terms with the impact this news has on me, my life, my work, my happiness, and so on. There is something growing in my lung, and when it continues, I will have to breathe pure oxygen soon.

I want to ignore it, but I am tired. Tired from fighting, always being flexible, resilient and ready for bad news. I don’t want to be a burden to my family and friends anymore. It’s must be very hard to continue hearing such news from me. How can I make it easier on you all?

There is only hope in healing and trust in our Lord. If medication is not longer working, then there is no hope of recovery. The only way to deal with cancer is then to accept, and make the best of what is possible every day. It’s what I have decided to do, and not allow depressing thoughts get a grip and dim my happiness. Enjoy the small moments, everyday!

Saturday, February 02, 2019

Background noise

It’s been a remarkable start of the year. My sister and niece visited, bringing coffe, candy and love. Their week-long presence was great yet exhausting. I pushed myself beyond what I could do before. The empty feeling after their departure was filled with smiles from my wife and daughter, enjoying the candy and lots of fond memories.

Somehow I had gotten over an invisible barrier which can be described as habitual rest. This habit had become a trusted ally in battling unexpected side effects, which I could thus handle at any time. Having my sis and niece around me most of the time changed a narrow recovery focus to enjoying doing stuff together. This sudden widening of my spectrum of activities, made me realize I could actually handle it. My body had recovered more than I had thought.

Now it’s 2-3 weeks later, and I am having a tough time with headaches, pain in joints and muscles. Under normal circumstances these are merely annoying as a kind of background noise. This week I missed 2.5 working days because of combined attacks of heavy head, surging heartbeat, gastritis, and stupid stress from work. The background noise has caused other side effects to stack up.

My capacity to think coolly was affected by all this. Every new event was stacked on top of everything else, which normally would not happen. In short: I need to find a way to reduce the background noise caused by pain. When I recall my comparison of cancer to other chronic illnesses, pain management is a very important part of treatment. Negating this can cause depression.

I will need to stay more active, but how to do that when energy levels and winter temperatures are natural demotivators? Will power is again the key success factor. It needs to be fed with simple motivation. A useful exercise for my mind the coming weeks at home and at work. Some initiatives I am working on could be a source of passion if I change my mindset. Let’s give it a go!

Sunday, January 06, 2019

Wisdom of a teenager

I am now 16mths on intensive and aggressive treatment which has reversed the damage of metastasis.   On NewYears morning, I was hit by the fact that the year ahead would be completely filled with hospital visits, infusions, side effects and regular scans. Another year of survival existence was a depressing thought.

I discussed this with my daughter over breakfast and she answered she had not enough wisdom, as she was not old enough. I didn’t agree with that, and said she had lots of experience living in Singapore, India and Japan, and that I would very much like to hear the wisdom of a 13 year old.

So she thought a bit and answered: survival is like bland tea. You need to add sugar and milk to make it tasty. So why don’t you live life a little by spicing it up and overcoming your fears? I wrote our conversation down, for her to keep, and to appreciate her support to me, and being my motivation to become healthy again.

That loving and wise advice is pulling me out of a bout of depression. Action is the only thing I believe in, so I started my 10,000 step walks again, visited my in-laws to help pruning the garden and had a movie night with my daughter. I feel exhausted, but more alive than in a long time. Thank you Marika!

Thursday, December 27, 2018

2019

It’s the season of singing carols, watching movies, eating good food, visiting family and above all thank Him for everything we received. It’s amazing how easy it is to forget that last important bit. 2 years ago I couldn’t travel due to the infections, and was home alone while Yuka and the kids were in Thailand.

2 years later it’s all back to normal, although flying is still not a good idea. Work is at 60% and life about the same. My wish for the coming year is to reach 100% life again, with hiking, meeting people and hobbies.

Work will be different, as it’s the last year full-time under the labor laws of Japan. May 2020 I will take a step back and pass the baton to the next generation. I will go on contract and do projects. Since that is what I already do, there will not be much change.

My New Years resolutions (新年の抱負 Shin'nen no hōfu) are in line with the above, and I will put in my best effort to make it happen! No alcohol, no stress and lots of exercise. Let’s pray our wishes are heard, and let’s hope they will come true. All the best in 2019!