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.

Saturday, July 13, 2019

History update

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.
May’19 : PET/CT scan shows that all activity in the body has cleared except for a spot in the maxillary sinus.
Jul'19 : CT scan shows all is clear. The doc said we should wait for the detailed report.

Friday, July 12, 2019

Clean as a whistle

The scan last Thursday was clean. Dr Namikawa couldn't find anything. We just smiled at each other, feeling happy about it and just tired of the 2.5 year fight. Actually I already felt clean after the last scan except for the nose, but now it was confirmed. Just wait for the detailed report (as always).

Now what? I started visiting an orthopaedic clinic where I get treatment to loosen up my shoulders and reduce the nerve related nagging pain. 20 minutes everyday, a short walk from work, lying on a water bed with jets massaging my back and shoulders. So cool and amazing. Japanese really know how to relax using technology.

The 4 nurses walk around setting up machines, helping the mostly elder crowd sit and get up. Omotenashi in action. Care for the customer, making them feel comfortable. which in itself is a radiating healing power.

Now my mindset has changed into being happy to have some pain to get rid of in the most elegant and soothing way possible. That is how I will get used to normal life. Just enjoying the ride back to a fulfilling lifestyle, full with activities and discoveries.

I am ready for my silver years, rewired and refired! I am now sorting out what I really like to do and with whom I love to work. That will guide me to enjoy my working hours. Its a great feeling to be able to plan my life and go on holidays again!

Thursday, June 20, 2019

Pain, pain....

I now have 2 months of severe pain in upper arm muscle and shoulder joints. The nights are the worst. I don’t know how to sleep. Turning and twisting unexpectedly sends jolts of pain. 
It’s written as being a side effect on Opdivo websites, confirmed by my oncologist.

As do other patients undergoing the same treatment as me, I am taking hot baths, visiting my chiropractor/physio to correct my posture, stretching, yoga, take walks, go cycling, go for massages. I do anything that keeps me moving. 

I stopped pain killers and pads as it’s just not helping enough. I stay active❤️ and hope it doesn’t spread and above all that it’s not permanent. ­čÖĆ sigh....

Sunday, June 02, 2019

Arthritis and muscle pain

Arthritis .... I have heard about it, my mom had it in her fingers, my sis is getting it in her fingers too. Now I suddenly have it in my shoulders. I can’t put on a jacket without jerking pain. Sleeping on my shoulder is history as I simply can’t fall asleep. Jolts of pain in my upper arms, like knives....

I read the message boards and find many patients with the same side effects. Opdivo, while killing metastasized Melanoma everywhere in the body, it can infect all joints and muscles. My wife said that more of my hair is turning white. I wonder what will happen next. My intestines play up after every infusion, but I now have the medicines to control the worst.

Headaches come and go, my strength is waning and I felt sad to go home early on the sports day of my daughter. I need to estimate how much energy I need to get home and leave in time. I found myself sitting on the station platform, eating and drinking as I simply could not continue in the afternoon heat.

This afternoon I went cycling for an hour, and it felt wonderful. I am tired now and hope sleep will come. These days I take a painkiller before I go to bed, just to get some rest. My daughter suggested I should try to sleep sitting up. Love continues to pull me through! ❤️

Monday, May 27, 2019

The End-Game has begun!

All metastasis appear to have vanished because of immunotherapy. What a treatment.... 44 infusions, every 2 weeks.... All that is left is an activity on the PET scan (taken on 10 May 2019), exactly in the location where it was diagnosed in Jan’17.

The analogy of the recent Avenger movie appears to be apt. I need to focus all that I have in me on cleaning that last (and first) Melanoma fortress. My immune system doesn’t need to do battle on many fronts anymore, no, only on the last remaining one.

The maxillary sinus was the target of Proton beaming in April 2017. My radiologist said at the time that all known activity had been burned away, and that there would, or could, not be a second attempt.  My dermatology oncologist decided to continue Opdivo infusions until the next scan shows how the tumor responds.

I have read about a possible new treatment, which is undergoing clinical trial, and that is to inject a virus into the Melanoma tumor and fight it from within. I am not sure if this is available in Japan. If the tumor in the sinus is not responding to the current treatment, my oncologist will recommend the next course of action.

I completely trust the team who is treating me. I will now pray­čÖĆ and put myself in His hands. I will mentally focus all the power of my trained immune system on the tumor in my sinus. The End-Game has begun! ­čĺ¬

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!