Traveling pain

I kept a record for a week on pain patterns. On Sunday I raised the alarm that the painkiller wasn’t working. Pain reduced because of steroids. Today my wife visited my doctor and I was supposed to join her were it not for accidents on the stairs due to nerve pain. The doctor said that the pain was not due to cancer as it travelled up and down.

He had checked Yervoy records and there were rare cases where it had affected the nerves. He prepared a prescription for medicines to calm the nerve system, repair it, and suppress the related shooting and constant pain. I just took the pill after diner and b12 vitamin, which helps repair nerve cells. I will wait a few more hours until I can’t feel any of the pain which has ‘befriended’ me the last week.

Wish me the good fortune that the analyzing conversation between 2 angels (my wife and doctor) resulted in a clear image on which basis dr Namikawa could prescribe the right medicines. My ordeal of hopeless and endless nights in search of sleep has surely come to an end. 

Such a strong belief and conviction has helped me so may times in the lsat years. My prayers also were very specific this time. Where I usually pray for others in need, I have learned to ask for help by directly asking Jezus. That request, I believe, has giving me the power to joke to myself how many positions I tried in a night to find rest and remove the agony.

Now it’s just a matter of time and constant posture reminders. Hope has returned, not wishing for a quick recovery, but for steady irreversible healing. The light of angels protects me from gloomy thoughts and keeps me away from depression. I feel truly blessed!

Positive results after chemo

A will of Steel is born. That’s how my steel will was born and shaped during the 60 infusions over the past 3 years…. There is no escape from cancer, you have to learn how to trust your body, rely on your hope, and live another day to enjoy the choices your kids make and have learned to make because you showed them through your lifestyle, your examples, your meager fatherly advice, followed by sound motherly advice, hitting all the right buttons, making you smile, why. You can’t says things so clear and to the point, suitable just to execute into success… hey, that’s being a dad. Did things right. Mothers say the right things, to the kids at least :-)

My relationship with my wife and children is changing. Because I know I have to change into a person, who is always grateful for having been supported so well, so careful, so heartwarming. My son stands up to take his place in the family, to represent me when I am not able, to support my wife mentally and with the chores. Now my daughter starts doing to same with such a quiet brother doing the things he has decided to be his contribution to our team.

A new mindset. That mindset started in January 2017, upon hearing the diagnose that I had a very rate type of cancer. We decided to get on with life, confuse our appointments, not pretend nothing was wrong, but continue with normal,life. Prevent it from becoming a trauma, in the same manner as we had dealt with the aftermath of the Tsunami on the beach of Koh Lanta in 2004: stay and help with the clean-up, while seeing the waters reside, run back into the ocean, fishing dead fish from small ponds, clearing the mud from our chalet, where the rising water had just covered the floor. The designer must have had instructions from Heaven to pick the exact right stilt height to keep us safe, until we decided to evacuate to the hills.

That’s how circles come round, and good decisions can become a life skill for your children. The day of the Tsunami made us realize that having one son was not enough. We decided then and there to have a second baby… Marika was born 10 months later on 25 October 2015…

Coming to terms with anger, acceptance:

• My radiologist is a great technician, but emotionally has to stay completely detached from his patients feelings. This view about him has endeared me to the tough job of making radiation decisions, irrespective of what the patient will have to endure. The same is the case for the dermatologist, chemo oncologist, and other treating oncologists. Cancer is lethal until its under control…
• Coming to terms with the role everyone plays, also makes you control your anger why this has to happen to you, that nausea is not a result of one of the treating doctors not willing to alleviate it with medicines. 
• They will!, once the cancer cells have been hit hard enough and are dying. That is the point where side effects can start to be treated with the available medicines. 
• The period before that point it’s sure chemo has done it’s job, one has choice than to endure it, with ones extended life as a reward. It may not feel worth it, during the deepest phase of darkness and mystery, but it will in the end when relief sets in.

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. 

Status of the metastasis

Every scan there is an update on the progress of recovery. Its quite hard to understand the overall picture, so I summarised it as follows:

Suddenly overcome with anxiety

My wife was in Singapore arranging the return of our cat, and getting a certificate for tea ceremony teacher. So I celebrated my 58th birthday with my daughter in a special way. Together we went for all-you-can-eat buffet and chatted all the time. It was wonderful. I feel so happy about being a father.

Before the diner, I had a difficult time with neck, throat, nose and sinus inflammations due to the sudden coldness. Many worries and concerns surfaced which are usually kept under control by my spirit and joy of life. Feeling really sick caused me to go home from work. Once I had slept I felt a little better and sat on the terrace amidst my plants and flowers.

Probably because I was alone, I couldn't stop feeling gloomier and gloomier, and finally had to tell myself to accept that it was not just a cold. The awareness that something was eating away in my bones and destroying my organs became overwhelming. That the medicines were fighting it and that the scan results are positive didn't help at all.


So I wrote a poem 'Darkness', and got so confused with what I wanted to say. It didn't make sense at all. My brain was completely blurred, 'chemobrain' as they call it. Everything was disconnected: body, mind and spirit.... I became scared. My daughter of 12 could loose her father so easily. My wife and son would manage I am sure, but not my daughter....

That is when my daughter returned home from school and we went for diner.......

Scan result

Today I went for a CT scan, blood test and infusion no17.
Doc Namikawa said the scan and blood test look good. Yeah!
I feel like a mountain; strong, unshakable and reaching for the sky.

Life is good. My work is not draining my energy anymore and I can reach 6pm now, after a long day of meetings with complex strategic discussions.

My skin is changing though. Pigment disappears and I am getting distinguished grey hair.
It’s about time at my age. :-)

NLR indicator

The neutrophil-to-lymphocyte ratio (NLR) is an independent factor for overall survival (OS) in patients with metastatic melanoma, whether they receive targeted therapy or immunotherapy. In a retrospective analysis performed in patients treated at a single institution, Overall survival was markedly improved in patients with an NLR <5 at a median of 14.8 months compared with those who had an NLR >5, in whom the median OS was 5 months, according to research presented by Elizabeth Blackley, MD, at the 2017 ESMO Congress.

My NLR was 3.4 when my treatment started and is now 2.2. 

As there is nothing written about results of immunotherapy for Mucosal Melanoma with metastasis in the bones (stage IV-C) patients like me, this is one of the first really tangible positive indicators. Yes!

Reference article.

Delayed lab test

The lab test results to identify mutations are delayed until after Chinese New Year.
The visit to the oncologist is rescheduled to 1-Feb.
Another week of waiting for important information .....
Keep up the spirit!

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."

posted related question

Why fast during Chemo?

How Does Fasting in Conjunction with Chemotherapy Protect Healthy Cells and Destroy Cancer Cells?

Chemotherapy destroys healthy cells along with cancer cells. Side effects are caused by the destruction of these healthy cells.For example, neuropathy results when healthy nerve cells are destroyed causing the sheath of the protective covering to degenerate. This results in feelings of numbness,tingling,pain, and often affects coordination and balance. This is a significant problem for many cancer patients undergoing chemotherapy.

Fasting appears to naturally slow the growth of healthy cells by causing the body to send instructions to cells to slow down and consume less energy. In effect, normal cells in the body go into "maintenance mode", much like an animal in hibernation. Cancerous cells typically ignore instructions from the body (which is why they are cancerous), and therefore are not affected by fasting. Thus, fasting during chemotherapy reduces the absorption of harmful drugs by the healthy cells by slowing down their growth, while the cancer cells continue to grow unabated. This has the obvious effect of reducing the negative side-effects without impacting the effectiveness of the treatment. If the healthy cells are protected higher and more frequent doses of chemotherapy can be given to patients resulting in a more effective treatment for some patients.Thus, advanced or more aggressive cancers may be safely treated without increasing the risk of side-effects of the chemotherapy.

How to Fast During Chemotherapy

If the oncologist agrees, the patient can fast for 3 days before and 1 day after chemo. Depending on what type of chemo is being administered and at what intervals this could change.

Patients should avoid re-feeding (resuming their regular diet) until the chemotherapy is below toxic blood levels (usually 24-48 hours after administration). Although we have rarely seen negative side effects caused by fasting (high liver toxicity markers in 1 patient fasting and receiving a chemo cocktail) there are some potential risks so keep that in mind.

For example, an early re-feeding immediately after the chemo could cause liver damage, because of the combination of hepatotoxic drugs with the proliferation of the liver caused by fasting. For this reason is important to have a minimum of 24 hours after the chemotherapy is administered.

Also, several patients have fainted while taking hot showers after several days of fasting probably because of the major reduction in blood pressure and glucose levels after day 1 of fasting.

The patient should not drive or operate machinery or should be accompanied by someone during the fasting period. Most people can drive while they are fasting but for a few this could be a problem so unless you know fasting does not affet your ability to drive, don’t drive.

Starting 24 hours after the chemotherapy, the patient should only eat rice, pasta or a similar source of carbohydrates + soups + fruit juices for a period of 24 hours.
Then, a normal diet can be resumed, paying particular attention to nourishment (vitamins, minerals, proteins, essential fats).

The patient should also try to return to within 2-3% of their body weight before doing another fasting cycle.
Obese patients should consult their doctors on whether some of the weight loss caused by fasting is advisable and whether they should try to remain at the lower body weight.
Diabetic patients should not undergo fasting unless this is approved by their diabetologist.
Subjects on hypertension medication should also talk to their doctor about the blood pressure drop caused by fasting and the risk of combining fasting with medications.

Until clinical trials are completed fasting will remain an experimental procedure and should only be considered with the approval of the oncologist and when other viable options are not available or are known to be ineffective.

Between fasting cycles, a low sugar accompanied by a mostly plant based 0.8 grams/kg of body weight/day protein intake diet (approximately 10% calories from proteins) is recommended but a registered dietician should be consulted to avoid malnourishment and unwanted weight loss.

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Chemobrain

One of the most distressing problems cancer patients may face, both during and after treatment, is “chemobrain,” or “chemofog” — the inability to focus, concentrate, remember, or simply think as well as they did before their cancer diagnosis.
Chemobrain is often at its worst for the first few years after a cancer diagnosis, but it can persist for 5, 10, or even more than 20 years after treatment.
There have been some estimates that it occurs in up to 50 percent of breast cancer patients, but I suspect it is much higher than that.

No Single Cause…
It has been extremely difficult to pinpoint the exact cause of chemobrain. Chemotherapy, lack of estrogen, chemical changes within the body caused by the cancer or the treatment, distress, anxiety, insomnia, and inactivity have all been implicated, but to date, no one of these can be singled out as the common denominator or sole cause of chemobrain.
Most likely there are multiple causes in any one person.

…and No Perfect Fix
There is also no known way of effectively treating chemobrain. Interventions such as medications, relaxation techniques, brain training or brain exercises, as well as physical activity have all been tried. To date, none of the medications have made a definitive change, nor have relaxation techniques.

There is some evidence that women who do regular, moderate exercise starting from the time of diagnosis may do better. Similarly, cognitive training techniques, such as word puzzles and games, may be of some benefit.

However, because there is no established treatment for chemobrain, doctors and other providers may feel uncomfortable bringing it up with their patients. We medical professionals generally like to have an answer for things, which is why many of our most challenging discussions and interactions occur when there is not a clear path or recommendation.

I think what is clear is that patients want to hear that what they are experiencing is real, and they want their providers and support system (boss, coworkers, family, and friends) to acknowledge their experience. This is part of normalizing the not-so-normal, or validating the cancer patient’s experience.

What You Can Do to Help Yourself
With no perfect answer for chemobrain, the following suggestions may help you to function better in spite of it, if it’s happening to you:

• Accept that you will have anxiety at the time of diagnosis and for some for months to years after you finish treatment, even if you are doing well and are cancer-free. This is very common and may affect your concentration. 
• Try to sleep as much as possible. This will not only help you tolerate your treatments, but it may also help with your clarity of thinking and organizing. Consider an evaluation in a sleep clinic, if necessary. 
• You may notice you are better at tasks you’ve done for a long time, but struggle with new tasks. Try to prepare for your days to limit surprises — such as multiple, unfamiliar activities. 
• Limit multitasking. You may have to rethink how you multitasked in the past. Be present in one task, and limit distractions such as email and texts, because the minute you divide your attention, you may need to start again from scratch — and everything will take longer. To keep track of everything you need to do, write things down. Use those Post-its. 
• Try doing crossword puzzles, Sudoku, or other games while you’re waiting for appointments or have some down time. Choose activities you enjoy at a difficulty level that is challenging, but not frustrating. 
• Start doing some regular, moderate activity daily. Start slow, and build up in doable doses. 
• Consider participating in a clinical trial if one is available to you that may give better insight into the causes of chemobrain and that may identify potential treatments. 

None of these will make chemobrain stay away completely, but they may help, and they can certainly help you better tolerate your therapies.

Also remember that symptoms of chemobrain are real. It is absolutely okay to be distressed and upset about them. You are not being weak and whiny simply because you are not totally content with being alive and cancer-free.

You also do not need to keep these feelings to yourself, as letting those around you know how you feel may help them better support you.
source

pre-Chemo prayer

10 things to know about Chemotherapy

1. Avoid raw fish and vegetables. Chemotherapy can decrease your body's ability to fight even everyday bacteria, so avoid raw fish, uncooked vegetables, fruits without a peel. soft cheeses, and undercooked meat or eggs. Cooked vegetables are fine.

2. Be aware of the side effects of steroids. Steroids (usually used to prevent a reaction to the chemotherapy) can make you feel crazy. It took two cycles for me to discover that withdrawal from the steroids was causing me to feel extreme irritability and suicidal depression, sometimes simultaneously. If you feel any crazy emotions, discuss them with your doctor. My doctor lowered my dosage, which reduced some of the withdrawal symptoms.

3.Use a safe mouthwash. I used Biotene mouthwash many times a day and brushed and flossed regularly. Biotene is specially formulated to reduce "dry mouth". It is important to minimize any bacteria in the mouth to avoid mouth sores, which can be extremely painful and difficult to heal during chemo.

4. Consider fasting. Side effects result when chemotherapy kills healthy cells along with the cancer cells. After my first session, I found a study indicating that fasting before, during, and after chemotherapy can reduce the effects of chemo on healthy cells, without reducing it's effectiveness against cancer cells. The basic idea is that healthy, normal cells listen to your body's instructions to slow down growth due to the fasting, but cancer cells continue growing normally. Even now the results of the study are not yet released, but research is still being conducted at the Mayo Clinic. My doctor advised against fasting, mainly because studies had not been completed, but I did it anyway. I feel like fasting was one of the main reasons I got through my treatment without any serious side effects (other than hair loss). Some more research is discussed here: Benefits of Fasting During Chemotherapy.

5. Avoid public places. Avoid public places as much as possible, especially doctors' offices and places with large crowds. When I did go out in public I brought Purell along as my new best friend. This happened in the middle of one of the worst winters I could recall, and during the cold and flu season. I took this very seriously and stayed home a lot - yes, at times it got extremely boring. The biggest challenge was not getting near the kids when they were sick. Fortunately my husband was able to work at home any time the children needed to be taken care of.

6. Compensate for nutritional deficiencies. Find out what nutritional deficiencies can result from your type of chemotherapy, and research what foods can be used to compensate. For example, my type of chemotherapy resulted in the loss of magnesium so I ate spinach, beans, and nuts to compensate. I also was terrified of neuropathy because a high percentage of people got this on a tempoary or permanent basis. I ate foods rich in Vitamin B and protein such as beans, chicken, and whole grain bread to compensate. I heard nurses giving people bags of magnesium at the end of treatment if their blood tests showed they were depleted, but I always tested fine in my magnesium levels. I never once heard a doctor or a nurse advising the patients to supplement their diet, which I never understood. Why not at least inform people of food choices that might be beneficial and let them decide?

7. Accept help. Don't hesitate to accept help when friends offer, but make sure it is help that will be beneficial for you. I turned down some offers that would have been more of an effort for me than a benefit. This isn't the time to worry about offending people or following society's rules. This is a time to focus on your health and safety, so you can ultimately be there for those that you care about.

8. Exercise! Try to exercise to minimize fatigue. Exercise can be a walk with a friend or yoga at home. Before chemotherapy I was able to bench press more than my body weight and do more pull ups than many guys (not to brag!) but after my surgery and during treatment I could barely do any extercise, and could only work out for 20 minutes. It is important to lower your expectations and accept that some exercise is better than none, rather than having unrealistic goals.

9. Use a cold cap. Consider using Cold Caps to avoid hair loss. They work on a similar philosophy to fasting, basically by slowing down the growth of hair follicles to they don't absorb the chemicals during treatment. They were still very new, and not approved by my doctor at the time I went through treatment. Furthermore, I didn't hear about them until after my first session, so it would have been too late for me to save my hair. But recently I have noticed brochures in the doctors' offices.

10. Buy only one wig. Take a friend or spouse with you when shopping for a wig and buy it before you lose your hair. Buy only one wig so you have time to see if you will use it at all. Don't be manipulated by people who want to make money knowing you are in shock and vulnerable.



I have a law degree, not a medical degree - so always check with your doctor before making any medical decisions (but don't blindly trust your doctor either). Always remember that the doctors, friends, and support system you select to help you through chemotherapy are your team: you are the team leader so ultimately any decisions are yours to make. If you or someone you love is going through chemotherapy my heart goes out to you and I hope this helps. Cheers to good health!!
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Fear for Chemo

When I realised that my resistance against chemo comes from a very old fear, I read up about what fear in its essence is. In short it's the reaction of the mind to get control over something that creates/initiates the fear.

So I started to dig deeper and study everything scary about chemotherapy:

1. The moment of hearing the news that chemotherapy is a must.
2. Not knowing what is the effect of chemo on the healthy tissue.
3. Not knowing how the effectiveness is measured. When do we know it works?
4. Not knowing what the side effects are and how can the inconvenience can be reduced.

After describing the root of my fear, and getting ready with questions for the doctor, it becomes tangible and the fear itself reduces:

• It's a treatment method which is not optional. 
• Get mentally ready for hearing the news from the doctors mouth.
• I have to live with the idea.
• Accept it and leave it in His hands.

The effect of the study, and uploading relevant content to this blog is that I am no longer scared of Chemo. 

"A medicine only works when we believe it works."

Bring it on! I believe.

"The efficient physician is the man who successfully amuses his patients while nature perfects a cure."

- Voltaire -