Diagnosis accuracy & Tentative treatment strategy

During discussions with the radio oncologist it was found that many suspicious active areas were a result of post-op inflammation. As a control engineer my gut feel says that it would be prudent to take a step back and asses possible errors in measurement during the diagnosis of the tumor:

• All three specialists have no experience with mucosal melanoma
• The imaging technology has a certain degree of error. PET scan and CT scan images are overlayed/superimposed to show the areas of increased injected sugar metabolism activity. 
• Inflammation and tumor show up on the scans with the same brightness level

Basing any decision on the scan taken 1.5 weeks after the operation needs to be considered carefully and we should not jump into hasty action. We have time as the tumor is still contained. My wife and son, who studies physics, agree with this approach and findings. It's important to get agreement on this as a family since all next actions will be based on this.

As a result, I feel it's better to give the body time to recover fully and do another scan when the interval is safe (from radiation viewpoint). Also an MRI (map the soft tissues) should be considered as that was what the radio oncologist recommended as basis of radiation treatment.

My wife, who fortunately is Japanese, is checking with the hospital in Japan to obtain their diagnosis and recommended treatment.
I will now ask for a second opinion from the 2 experienced melanoma doctors in the US, whose names were provided by the chemo oncologist. This may take time which is another good reason to wait with treatment.

Tentative plan: (to be discussed with the chemo oncologist coming Wednesday)
Make an updated diagnosis comparing a new scan with the current one, and use that as a basis to decide treatment:

• Wait for 2-3 weeks to let the body recover fully, and get a second treatment opinion from the hospital in Japan and 2 doctors in the US.
• PET/CT scan to decide on the preferred treatment strategy
• Decide the type of drugs for chemo treatment based on the lab results: Specific mutation drug (if found in the lab test) or the new Immunotherapy drug Nivolumab
• Drug treatments (4 weeks). This depends on diagnosis and advice by hospital in Japan. If they advise to start treatment early then we skip the drug treatment.
• Proton treatment in Japan (about  4 weeks)
• PET/CT scan and check progress. Decide if drug treatment is required or not.
• Drug treatments (4 weeks)
• PET/CT scan and check progress.
• Let white blood cells take over the fight ( 4 weeks)
• PET/CT scan and check progress
• cont. until recovered.

Back/up plan:

• Restart Nivolumab
• Second proton treatment
• Invasive Surgery, high risk as it's near the eye and brain.
• !no electron radiation due to side effects.!

During treatment:
Watch peculiar new pains, numbness, double vision.
    - Then first MRI to map all soft tissues.
    - Decide on surgery in sinuses and nose.

Notes: 

• Some patients in Japan who opt for proton beam treatment after being diagnosed with Melanoma decide not to take any drugs before or beside the treatment.
• Some patients start treatment 1 month after being diagnosed. In those cases there was no operation preceding the PET-scan.
• Proton treatment has been practiced in Japan for 14 years with very good results.

Radio oncologist meeting Result

We met with a very kind and factual radio oncologist, who explained the meaning of the colors in the PET/CT scan. Whenever he was in doubt, he referred to the Nov'16 CT scan on my head. He asked if I had double vision, or numbness which I didn't have.
He pointed out that the tumor had not entered the orbit of the eye. This was a great relief. The tumor was contained in the sinuses.

He compared the left and right side, and found that certain yellow areas of high metabolism activity were not tumor, but post-op inflammation. Also when I explained that my nose had been broken during the operation to make space for breathing, he could eradicate more yellow areas of activity.

He explained the options of treatment (not in sequence of preference):

1. Surgery with 'mop-up' radiation
2. Radiation using protons/heavy carbon irons in Japan, Austria & Germany
3. X-ray treatment in Spore. (Make mask, CT-scan + MRI scan.) 6-7 weeks of treatment. 

X-ray side effects:
    1. Temporary irritation of eye.
    2. Temporary tanning of skin.
    3. Temporary nose block.
    4. Permanent loss of saliva glands on the left side.😳
    5. Painful ulcerations on mouth pallet after 3-4 wks. (Use cream and pain spray).😳
    6. Temporary hair loss in the neck.
    7. Temporary blocked ear because it may receive some radiation.

Proton beam treatment locations:

• Japan, Chiba: Best technology. Not approved by FDA. He recommended this treatment as it was proven effective for melanoma. (Same treatment at a different hospital)
• Austria, Heidelberg: has more experience with melanoma.

Advice and next action:
His final advice was to start treatment before it goes into the orbit of the eye.
He would discuss the results with my chemo oncologist.

Corrective action plan

Food and diet Action: (discussion with Wai Chin)
- Chew food well, take time to eat.
- Take B-complex supplement morning and afternoon
- Eat more citrus fruits
- Add plant based protein to the diet: beans, soya milk

Other actions:
- Measure temperature, should be above 36.5 (now is 36.0)
- Do the O-ring test to find out which foods are good for me.

Change in Attitude action:
- Think positive at work, stop negative cycles in thinking
- Follow the heart more than the brain: more passion, less control
- Don’t try so hard to be the perfect mentor and father, relax and let it run its course
- Open up for help more
- Never loose my temper anymore (count to 10)

Health status, Bioresonance therapy

—————————————————————————————————————
Note: This test is for reference only and not a diagnostic conclusion.
https://en.m.wikipedia.org/wiki/Bioresonance_therapy
WebMD: "There is no reliable scientific evidence that bioresonance is an accurate indicator of medical conditions or disease or an effective treatment for any condition."
—————————————————————————————————————
Probably hidden problems.
* Trace elements:
        * Vitamin B6, normal range: very low
    * Advice:
        * Supplement corresponding lacking trace elements.
Problems of sub-health trends, by body system.
* Cardiovascular and cerebrovascular:
        * Vascular elasticity & Stroke Volume: low
        * Left Ventricular Ejection Impedance: high
    * Advice:
        * Balance work and rest, stabilize emotions.
        * Eat more foods for adjusting blood fat such as black fungus, mushrooms, vegetables and fruits.
        * Eat less food with high cholesterol, high salinity and high-fat foods.
* Gastrointestinal functions: slightly low
    * Advice:
        * Eat more non-stimulating and digestible foods and vegetables on time,
        * Chew the food thoroughly. Relax in eating. Eat less but have more meals
        * Keep happy mood, pay attention to rest, and do not eat cold food.
* Liver function: Bile Secretion function: low
    * Advice:
        * Eat more foods rich in vitamin B, C and E such as black fungus, mushrooms.
        * Eat less fried foods
        * Quit smoking, drinking and spicy foods
* Bone mineral density:
        * Amount of calcium loss, Degree of Osteoporosis: High
        * None Mineral density: Low
    * Advice:
        * Have a reasonable diet,
        * Pay more attention to exercise. Increase outdoor sports (walking, jogging etc)
        * Supplement adequate calcium
* Rheumatoid bone disease: Osteoporosis: High
    * Advice:
        * Eat less bean food and soy products
        * Donot eat stimulating foods, dont smoke and no alcohol
* Trace elements:
        * Calcium, Iron, Vitamin A, Vitamin B3: Low
    * Advice:
        * Supplement corresponding lacking trace elements.
* Skin:
        * Collagen: very low, Grease: very high, Moisture: low, Elasticity: low
    * Advice:
        * Eat more vegetables and fruits rich in Vitamin C
        * Less food with strong sensitivity towards light (Caraway, red turnip, celery etc)
        * Avoid expose yourself  to direct sunlight too much, prevent harm from UV
* Endocrine System, Thymus gland secretion index: low
    * Advice:
        * Recommend eating more high protein and vitamin B and C rich foods (yam, soya milk)
        * Lead a regular life, soothe emotions, practice yoga
* Immune system: Thymus index: Low
    * Advice:
        * Psychological adjustment, optimistic attitude
        * Spend more time with friends and colleagues
        * Participate in meaningful activities to keep body in a strong state.

New daily rhythm

Early morning:

• Wake up between 5-7am, blow my nose and flush it with saline solution
• Take a tablespoon of cold pressed sunflower oil and swish it in my mouth while smiling, meditating, preparing yoga mat, soothing music and prepare first mug of green tea.
• Spit out the oil mixed with saliva, imagine all toxins left the body with it
• Take a huge slice of japanese pink ginger (sushi)  and chew it as long as i can. The taste buds on the sides of my tongue scream but i get a deep, satisfying sense of cleansing.
• Do yoga while smiling, followed by light excersize for 1 hour. Feel exhausted and rejuvenated.
• Have a second mug of green tea while recovering, meditate and chew patiently on celery, carrot, bell peppers and cucumber.

Breakfast:

• Take with breakfast: vitamin B-complex, 2 sunflower oil tablets, anti-hystamines.
• Breakfast is a glass of fresh apple-carrot juice and miso soup with lots of tofu and boiled cabbage. Drink water and a mug of earlgrey tea with milk.

Morning:

• Cherish my only cup of caffe latte with cinamon powder.
• Snack on veggie sticks.
• Steam trough nose with tea tree oil for 15-30 minutes. Smile while doing it.
• Go to office, meet with people, have teleconferences, mimize travel, delegate clearly, let it be and depend on quality staff, let them grow by being a calm and positive radiating role-model, minimize e-mail reading. 
• Think positively on any info coming in, any opinion has good intent. Stop thinking suspicious thoughts. 
• Let others worry about their own hidden agendas and delegate the task to themselves to check if they make progress on it. Make fun of them in your mind observing their tricks as they don't bother or touch you anymore. Laugh and shrug it off.
• Stop trying to control progress in everything. Let it go and check on it once a week with the person you assigned to it.
• Walk home, enjoy the sweat, smile at people around you, enjoy nature, be happy to live.
• Cleanse the nose before lunch with saline fluid.

Lunch:

• Lunch is a bowl of yoghurt with chai seeds, honey, cinnamon and cereals, and a bowl of cut apple, chinese pear and grapes. A mug of green tea goes with it.

Afternoon:

• Take a nap.
• Work from home. 
• Cleanse nose around 4pm and take a warm bath with 4 drops of tea tree oil. Relax in the bath, not too hot, smile and breathe in the damp and oil through the nose.
• Spend time with my wife and children, joke and hug.
• Stop trying to be the perfect father and spend that time and energy being with my family. 
• Swim as many laps as possible, feel exhausted. Rest at poolside in the shade. Enjoy the warmth of the sun.

Diner:

• Diner is the same as the rest of the family. Lots of green leafy veggies, broccoli, soups, sea food, no processed meat. More fruits for desert: citrus, apple, pineapple, pomello, grapes.

Evening:

• One more time cleanse the nose (after diner) at least an hour before sleeping so the throst can re-establish mucus balance to prevent dry throat while trying to fall asleep.
• Watch a movie together or talk about positive changes and how to remove stress in life.
• More green tea.
• Before going to bed a detox glass of virgin oil, a lime, honey and hot water. It makes the bowels move smoothly and removes any toxins with it.

When waking up at night:

• Drink a cup of barley tea
• Sit in lotus pose, feel vibration through the body with 'oohm' and smile while breathing through the nose.
• Put on warming eye mask.
• Lie down, breathe in through nose (4sec), hold breath (7sec), breathe out through mouth (8sec).

Weekly/monthly:

• Every week take an oxygen treatment session (Hydrogen-per-Oxyde (H2O2) or Ozone (O3))
• Every two weeks check if anything is lacking in the diet due chemo side effects, changing energy levels, boredom with same diet.
• Review if you really let go of controlling everything. Write down which pattern you still fall back into. Try harder and smile at your silly mistakes. Never get angry with yourself. Any progress is good progress.
• Eat a cookie or favorite candies once in a while. Dont be too strict or hard on yourself.
• Talk with beloved family by whatsapp/skype and exchange views on progress.
• Plan a diner or coffee with good friends, have a glass of white wine, laugh a lot, crack silly bad jokes and enjoy conversation.

PET/CT scan result

We had an appointment at 15:15 on 17 January with my surgeon to discuss the results of the PET-scan. The wait for the PET-scan was several days but it gave me time to study and think through the options.

The period between the scan until this appointment was dreadful. The nights were broken, thoughts and worst case scenarios running through my mind. Everytime I had the fortune to recover my peace of mind and that my positive attitude took over and made me go back to sleep. Discussing with friends and family provided lots of support.

When the time came, we walked to the clinic, only to find there was a long que waiting. The 30 additional minutes in the waiting room were long. I started reading the Bible....
The specialist said it hadn't spread to lymphe nodes but there was a possible metastatis in the pelvic bone. He then started cleaning my nose and removed tissue for mutation testing. No other findings so I was very relieved. Nothing in lungs, liver, etc. it would be treatable with medicins and as a backup plan through radiation. Great!👍

Clinical Impression:

• Abnormal FDG uptake is seen in soft tissue extending from the anterior aspect of the left ethmoid sinus to nasal cavity and anteromedial aspect of the left maxilla. This is suspicious for the known malignancy.
• Nonspecific mildly FGD avid opacification is noted in the rest of the maxillary sinus, part of the right maxillary sinus and the posterior aspect of the left sphenoid sinus, more in keeping with postprocedural changes or mild inflammation.
• Mild focal abnormal FDG uptake is seen in the left iliac bone. This is suspicious for metastasis.

Briefing with oncologist:

• TNM staging: stage 1 as it is not in the lymph nodes but stage 4 as it has possibly metastasized.
• AJCC staging: Melanoma Stage IV Oligometastatic as it has possibly metastasized in a single second location.

When discussing, the oncologist stated that if the second location is a false alarm, and just a infection etc, then the tumor is contained near the nose.
This the way I am going to deal with it in my mind.😀
No statement nor discussion about life expectancy. We didn't ask either as I am not interested in vague statements which keep on coming back in the dark of the night. It also depends on the mutation and use/effectiveness of new immunotherapy drugs.

Possible Metastasis in the pelvic bone:

• The finding in the pelvic bone is not confirmed cancer. A biopsy is required, but the oncologist suggested to better leave it for now and focus on the main tumor. 
• There are various treatments possible for it later. For instance, when doing the biopsy we will kill it with local radiation.

Melanoma treatment:

• Natural healing. The oncologist agreed that everything helps: Good nutrition, yoga, excersize, keeping the spirits high and don't sit in a corner. Going back to work is a great idea and he encourages it.
• Chemo using Interferon. The oncologist explained that during his studies this was all that was available. Nowadays there are specific drugs to treat Melanoma and Interferon is not used. However, as he is not a Melanoma specialist, the oncologist suggests that I to write to specialist treatment centers in the US AND Australia to find out more about specifics treatments. The oncologist will provide the contacts.
• The specific mutation of the melanoma needs to be identified. There is a lab test possible in Singapore for known mutations and in Harvard for mapping all mutations in the sample. The oncologist will initiate the lab test now for known mutations. I need to decide if you want to send another sample to Harvard. (cost is approx 8,000US$)
• New immunotherapy drugs are available. These are expensive and you can check with your insurance about it. These can start anytime, need to be ordered, and side effects can be managed with medicins. As these are new drugs, effectiveness depends on the type of cancer. There is little known about the treated cases.

Next action:

• The (chemo) oncologist suggested to meet with the (radio) oncologist to discuss the options of radio treatment. An appointment was made and I will write separately about that briefing.
• The surgeon and both oncologists work as a team and will meet afterwards to discuss how to treat me in the best way after lab reports are in. 

All three specialists are Christians and have been working together like this for the last 20 years and saved many patients together. This teamwork is very inspiring and commendable.👍

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

Today

On top the winds blow,
whipping up restless waves.
Their searching crests,
itching to crash 'n thunder.

The deep blue ocean,
blissfully unmoved
Listening to the wind,
as it comes and goes.

It's how today will be,
when the storm peaks.
Deep down so calm,
confident it will pass.

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.

source

Treatment questions for 1st Oncologist visit

Treatment Question:
- What are the options of treatment?
- Any new unproven treatments?
- Any side effects? How to prevent/ease the effects?
- How do we know the treatment is effective?
- How we measure progress?

Chemotherapy questions:
- Which nutritional deficiencies can result from my treatment?
- Does Cold Cap work to reduce hairloss?
- Does fasting it minimise damage to healthy cells? 3d before and 1d after? (T regulatory cells.)
- Which anti nausea drugs can I get?
- What is neuropathy and how to prevent it?

Radiotherapy questions:
- Is my treatment aim to cure, prevent recurrence or to relieve symptoms (palliative)?
- (Two types of issues from the book)
- Which medication can i get to minimise damage to healthy cells?
    - Salivary glands: Amifostine
    - Nausea: ?

Radiotherapy

Types of radiotherapy:
- IMRT: (Intensity modulated radiation therapy) different intensity in areas of tumor.
- IGRT: (image guided radiation therapy) repeated PET identify changes in tumor sixe and location.
- Tomotherapy: combined imaging and beam radiation.
- SBRT: (Stereostactic radiosurgery) delivers a high dose very accuratly.
- Brachytherapy: Internal radiation therapy
    - Interstitial: radiation source is placed inside the tumor (prostate)
    - intracavity: surgically placed in a cavity
    - Episcleral: attached (melanoma in the eye)
Isotopes are sealed in pellets (seeds). They are placed in patients using needles/catheters. They decays in few weeks. They can be placed temporary or permanent.
- Systemic radiation therapy: swallow/inject radioactive substance. Delivered to the tumor for specific tumors. New treatments under trial. Body fluids emit low level of radiation. Limit contact with children below 18.

Type of particles:
- Photons: delivers small packets all along their path.
- Protons: deliver energy at the end of their path. (Bragg peak)
- Electrons: irradiate superficial tumors (skin cancer) Cannot travel far through tissue.

Timing of Side effects:
- Early (acute) during treatment: temporary like skin irritation, hair loss, urinary problems, salivary glands damage (can be permanent) Amifostine van help protect salivary glands.
- Late (chronic) effects months or years after treatment

Type of Side effects:
- Fatigue: common side effect.
- Nausea: common for abdomen or brain treatment. Medication are available to prevent/treat.
- Fibrosis: scar tissue
- Damage to bowels, bleeding
- Memory loss
- Infertility
- Second cancer caused by radiation exposure

source

10 ways to reduce stress

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 -