Serve to lead. This is a blog for Hope, Help & Health. Peer to peer cancer survivors, leaders and caregivers. No boundaries. This is not a blog for charity, but we engage in charity work. We try to provide palliative care to the best of our capabilities.
Wednesday, December 31, 2014
Happy New Year 2015
Hi all,
Happy New Year 2015 to you and your families. Good health and blessings for always.
From
Allen Lai
Wednesday, December 3, 2014
What is it to be in remission?
My PSA levels
Yesterday, I did my regular checkup in the Institute Kanser Negara, Putrajaya. The Oncologist was pleased with my PSA numbers for the past two years, albeit rising slowly after my last hormone treatment. My PSA readings had a trend of a high rise and a low rise intermittently. But the last PSA reading showed NO rise at all and remaining at 0.18 ng/ml. My PSA level is significantly too low to worry about for now.
The doctor told me that I am in remission, and do not worry about my cancer for now. Live the best lifestyle as possible for as long as possible. PSA levels are not designed for patients to analyse nor to worry about. The PSA readings are for your Oncologist to monitor your cancer. Let the doctor see the bigger picture as the PSA level is only one of the factor to consider. There may be other threats to the body like problems with other organs and having other diseases in the body.
That’s it. you are in remission. Live your life and do your thing until your PSA readings reflect something radical and that is compounded by some physical symptoms. Otherwise you are in remission.
I wish to share other views about remission in the link below:
Take care all,
I am off to celebrate. I am in remission.
Allen Lai
Monday, December 1, 2014
Ten good reasons for joining a support group
I am glad that I chanced upon a very good website explaining the values of joining a support group.
I extract their full text below :
Have you been circling the idea of joining a support group but haven’t made your mind up yet? Why would someone like you choose to join a support group? In other words, what’s in it for you?
Often referred to as Group, a Support Group is a circle of people who conduct meetings and talks cantered on specific issues. If you have one particular issue in life which you need to heal or recover from, then you have every reason to be part of a Group.
Specifically, here are ten good reasons why someone like you would choose to join a support group:
Join a group to avoid feeling alone and isolated.
In the face of a personal life challenge, it is feelings of isolation which can be your greatest enemy. In this case, it can be very reassuring to know that you are not alone. Your struggle is neither as different nor as unique as you first thought it to be. Difficult as it is to deal with life’s issues all on your own, you don’t have to. You can find relief in the presence of other people who share the same struggles. And the more you share your experience, the more you realize that your struggles have become lighter and bearable.
Be part of a group that reaches out to others.
In sharing your experiences, you likewise reach out with your thoughts and feelings. You choose to open up an area of your life – not to a typical bunch of ordinary strangers, but to those who similarly have special needs or are under extraordinary circumstances. These are the people who can relate to how it feels like to be in your shoes. Thus, you feel connected with these people and once again reconnected with the outside world.
Join a group to have a shoulder to lean on.
Although everybody needs answers and solutions to their problem, there are times when all you need is an ear to listen or a shoulder to lean on. After all: Who else to unburden and verbalize these to but someone who understands the problem first-hand? By leaning on one another for affirmation, you lend strong emotional support. The support is mutual of course because, one day, it might be your turn to be that crying shoulder and to be the stronger one.
Joining a group allows you to hear and be heard.
Just remember: When you are around a group, you are rubbing elbows with people who are prepared to listen. Much like you, they too are hungry for more information. They too may be nervous about sharing personal details. And yet all of you will benefit from hearing and being heard. So, as a first-timer or a newbie, you can’t go wrong with listening and tuning-in first. Once you get more attuned to the flow of the talk, you will know when to voice out your opinion as well as when to pause and listen.
Joining a group enables you to understand and be understood.
In a group which is open to talking about thoughts and feelings by turns, everybody gets the chance to contribute. In effect, you have a higher chance of understanding and being understood. When you are part of the right group, it is highly likely that other people understand exactly what you are going through. No longer are you unique and one-of-a-kind; rather, you are one with the group and you all have something in common. The only difference is that some may already have attained their goal ahead of you, while the rest of you are still striving to achieve it. Nonetheless, you can count on your fellow members to back up your progress.
Join a group because it helps you stay informed.
One of the most enriching aspects of a support group is that it empowers you with knowledge and information. It is either your group has the answer you need and can equip you with solutions, or it can lead you to the answer and give you directions. Your life will be a whole lot easier, simply because there are people willing to share their own coping skills and survival techniques.
Being part of a group makes you more accountable.
Participation in support groups makes you more accountable for your choices and actions. If you are on a program, for example, your progress will be monitored. Especially when the group is small in size and close in ties, do expect your absence to be noticed. Your peers will express concern when you don’t show up for a weekly meeting. They may even go out of their way to find out what other problem could be hampering your healing and recovery.
Join a group to keep you right on track.
With the goal of simplifying your life rather than complicating it, your group will surely try to keep you within the program. On one hand, sticking to the course set for you and your peers will help you manage the problem and maintain control. On the other hand, if you go it alone, the tendency would be for you to lose focus and be off-track.
Be part of a group and build more relationships.
Other than helping you rebuild your life, joining a group will help you build new and meaningful relationships. Setting aside the possibility of dating and matchmaking within this circle, in the meantime, the primary purpose is for you to associate with people who truly care, mean well, and look out for you. With closer ties and lasting friendships as an added bonus, this experience can be very rewarding!
Join a group because it is the right one for you.
Lastly, join a group because you genuinely believe that is it the right one for you! Being in the company of the right group will spell a big difference in your life. With its fair share of accomplishments and losses, along with joys and sorrows, a group that you can relate to will help you heal and recover faster. It will also improve your outlook and change your life for the better.
Visit Http://www.foundsupport.com here.
Friday, November 28, 2014
Stable PSA
Hi all,
Yes I have not posted for quite awhile, the main reason being I am changing my lifestyle from pure physicals to a bit more outdoor adventures for fun and also trying out a new approach. However my standing strategies to beat cancer remains unchanged. That is to maintain a healthy and strong body through exercises, fresh air, hydration and sunshine for vitamin D. I also pray without fail to God for his blessings.
My PSA had been rising slowly and steadily since I had stopped my Zoladex injections for a year now. My Nadir level was 0.01ng/ml when I was under hormone therapy. My PSA rose from 0.02 ng/ml in January 2013 to 0.18 ng/ml in November 2014. A steady rise of about an average of 0.01 ng/ml per month. It levelled off intermittently in May 2014 and plateaued off at 0.18 ng/ml for the last three months.
I am pleased with my strategies to beat cancer. However I should note that I began to take 1000 mg of Metformin every night since March 2014. This may be the cause for my PSA to plateau off. I shall continue to monitor the effects of Metformin in the coming reviews.
Take care all. I am off to celebrate.
Allen Lai
Wednesday, September 24, 2014
Gleason score - A pathologist's experience and explanation
Whilst we generally understand and accept the Gleason score given with our biopsy's. It's impact is quite subjective.
Yes we do not usually have the opportunity to share a discussion with a pathologist.
I thank 1Randy for sharing his discussion with a pathologist in Us TOO Prostrate Cancer support group meeting.
I reproduce 1Randy's post below for your attention
Hi guys. At our cancer support group meeting last week we had a Patholigest from Community Hospitals if California, Dr. Honda. He has done thousands and thousands of reports for over twenty years. He basically only does Prostate and Breast Cancer biopsys. He showed us how he rates the slides and explained the Gleason scoring in detail. Many bits of information I had never heard. Things we don't hear from our Drs. I thought if share some things. These are some bits if info.
Gleason 10: He said in all the years he had been doing biopsys he has never seen a 10 that hasn't spread to other organs.
Gleason 9: A 9 he said is slightly better than a 10. Most have spread and have a very high rate of reoccurance.
Gleason 8: Slightly better than 9. Sometimes it has spread and has a high rate of reoccurance.
Gleason 7: Thats mine. Better than an 8. Once in a while it can spread outside the capsule and has a good chance of reoccurance.
Gleason 6: This one was interesting. I told him some people say a six is not serious. He told us a 6 is the most common. It's still cancer if course. It can still spread. Not as serious if a guy had one core if twelve possitive with 5% or 10% involvement. 11/12 cores positive with 75% involvement is a totally different thing. That can break out.
Gleason 5 and under depends in many factors.
He said we all can't just go by the Gleason score. Family history is a huge factor. Tumor size also. How many samples are positive. Basically it's all serious unless you have very low numbers. As I've said before the Amarican Cancer Society had said Prostate cancer is the second biggest killer of men next to lung cancer. He was speaking only as a Patholigest. These are facts but he said some Drs sugar coat your scores so you don't worry do much. I'm sure prostate cancer isn't our biggest problem in that the biggest worry is if it had spread to other organs. I just wanted to share. Hope no takes offense. This was information we all can look at to help. He makes no determation about treatment, he said that is between a guy and his dr. All he does is look at slides. Good luck to us all! Randy.
Thank you Randy and Dr Honda. Visit Us TOO prostrate support group here:
http://www.inspire.com/groups/us-too-prostate-cancer/discussion/gleason-scoring/?ref=as&asat=199297090
Take care
Allen Lai
Saturday, September 20, 2014
Rise and Fall of PSA post radiotherapy and hormone therapy
My personal PSA movements
I have interesting news to share with
those who chose Radiotherapy combined with Hormone Therapy treatments.
I participate in US TOO Prostrate
Cancer Support Group - Inspire. Visit the group here http://www.inspire.com/groups/us-too-prostate-cancer/
During one dialog I had a reply from
Mr Richard Davis who had an interesting theory to share. That is our PSA will
rise after we finished out Hormone treatment, AND it will rise until a certain
point when it will possible plateau out or return back to zero level.
He showed me a sketch graph
illustrating the theory or Hypothesis developed by a prominent Oncologist /
Radiologist in MD Andersons Hospital.
I produced my own graph with EXCEL as
shown above with explanations to the theory.
X = Time line for 4 years, the normal
time for Radiation to continue to be effective is between 3 to 5 years or even
more years for some.
Y = PSA levels.
RED LINE is PSA decline due to
Radiation without additional treatment of ADT.
BLUE lines show PSA rise for those
people after stopping ADT at 12 months, 24 months and 36 months. I stopped
after 36 months.
I started off with PSA = 27 ng/ml
with my last ADT injection on 36 months. My PSA started to rise again after
stopping Zoladex.
My PSA level is now 0.18 ng/ml after
18 months from stopping Zoladex injections.
My PSA will be expected to rise until
it meets the RED PSA line created by Radiation treatment AND thence will start
to decline ALONG the Red line.
Please note PSA bumps are experienced
with mostly Brachytherapy. I did not get the bump after 12 - 24 months after my
radiation.
I hope this theory will hold true as
Mr Richard has assured me that he himself and others had experienced this trend
of PSA leveling out and then returning back to zero.
A paper will be presented on this
hypothesis hopefully soonest.
Take care all,
Allen Lai
Tracking my PSA
My PSA chart post primary treatments
I had my primary treatment for prostrate cancer in HUKM
(Hospital University Kebangsaan Malaysia) in January 2010. I had a dual
modality of external beam radiation and hormone treatments. My PSA at that time
was 27 ng /ml with a gleason score of 3+4. I had 32 sessions of radiation and
36 months of Zoladex, injected in my stomach every quarter.
My last Zoladex injection was administered in February 2013
with my PSA suppressed to 0.02 ng/ml throughout my treatment. My Nadir point is
0.02 ng/ml.
By May 2013 my PSA had started to rise slowly and steadily to
0.03 ng/ml, 0.09 ng/ml, and 0.12 ng/ml at every quarter, reaching 0.18 ng/ml in
August 2014. It recorded a steady rise of 0.01 ng/ml per month over 18 months.
The graph in blue (Series 1) above shows the reading values
and the graph in red ( Series 2) shows the amount of increase over 18 months.
Yes we see two doubling rise times, 4 consecutive rises, but with a fairly
slower velocity.
I was advised to be on active surveillance until my PSA
reaches Nadir point plus 2.0 ng/ml which is recognized as prostrate cancer
biochemical failure for radiotherapy/ hormone treatments. It would also be
difficult to scan for any cancer cells at this point of time.
I have since
requested my case to be referred to the IKN (Institute Kanser Negara) in
Putrajaya for further surveillance/treatments.
At IKN I was also placed in active surveillance. My next
appointment is scheduled on 02 December 2014.
I am still reading into the value and benefits of early
aggressive salvage treatments vis-a-vis aggressive active surveillance for
disease progression until we have a confirmation of a local or distant failure.
Tough choice.
Allen Lai
Saturday, July 26, 2014
Climbing Mount Kinabalu 13,435.7 feet
Me
I was crazy. Yes I was. I climbed Mount Kinabalu in Sabah again on 16 July 2014.
I had climbed the mountain in 1966 at the age of 22. I was
then very fit, dashing and of course Gungho. On coming down I had sworn that I
would never climb Mont Kinabalu again. Never ever. Now I am a month’s shy of 70
years old and I was crazy to climb again.
Mooting the idea
It was last year when Pak Peng, my wife’s brother from
Melbourne came home and had wished to visit Sabah and Sarawak. We had planned
to visit Kuching and the Mulu Caves in Sarawak and then visit Kota Kinabalu and
climb Mount Kinabalu. We did the Sarawak part but could not continue with the
Sabah leg, pledging to do it this year.
This is the Staircase to heaven said the Kinabalu National
Park tour guide. Sabah is the Land below the Wind. Cancer had promised me a
quick way to Heaven too, but I would not have it. I prefer to take the Kinabalu
route.
Between the summit of the Mount Kinabalu and I are
apprehension, excitement, altitude, weather, fear, and cancer. All challenges.
But I do know I had to do it to beat cancer. I had to overcome. When I started
running marathons, I had said that a single step in the run would kill off
100,000 prostrate cancer cells. Now for every step up Mount Kinabalu, it would
kill one million prostrate cancer cells. It was my personal challenge.
Preparations
My wife and I started to do walks in the neighborhood to
warm up. We then included walking up and down our staircase at home. We also did some climbing at the Batu Caves. And
finally we did some climbs and trekking in Berjaya Hill Resort in Bukit Tinggi.
Not much preparations, but enough.
I had to stop my training preparations when I sprained my core muscles
around my left waist. I was in pain with each step.
Thanks to our Exercise Support Group in UMMC I was
physically fit enough to try the climb despite my injury.
My Suunto Ambit 2 GPS watch is an excellent watch for
mountaineering, trekking and all types of out door activities. It is able to
monitor my progress and performance with its array of essential sensors during
my climb.
We had booked online for the 3 Days 2 Nights tour with Sabah
Best Tours, a local tours agent in Kota Kinabalu.
Day One
We flew Airsaia to KKIA arriving at 1015 hours. We were met
by our tour agent at the airport and was quickly whisked to the Kinabalu
National Park HQ and Resort at 6,122 feet in Kundasan. As it were, my wife
started to have stomachache and stomach cramps upon arrival. We had stopped in
KK to purchase some Chinese herbs and Brand essence of chicken. After two hours
ride in the tour van we arrived in Kundasan after a brief stop at a roadside
village cum vista. My wife’s stomach pains did not abate, so we stopped by the
local government clinic at Kundasan town. We were pleased that the service was
pleasantly efficient and effective. She got a jab, some Buscopan pills (Hyoscine
Butylbromide), and mineral salts.
We checked into the Park HQ and registered ourselves by 1700
hours. It was a pleasant evening with dinner served. We had twin rooms and
turned in early in preparation for Phase One climb.
Day Two
We woke up early and prepared for an early breakfast and to
collect our packed lunch. Unfortunately my wife Peggy was still with stomach cramps
and was totally exhausted from dehydration. She declined to join us for the
climb in tears. We made arrangements for her to remain in the park HQ and Peng
and I proceeded to our start point at the Timpohan gate, several kilometers
from the park HQ. There was another trail called Mesilau Trail, which was
supposedly more scenic but was longer by 2KM than the Timponhan Trail. Both
trails meet at the 4 KM summit trail.
After registration at the Timpohan Gate, we started off at
0900 hours. Our climb started fairly well. The summit track was well defined, wide,
and paved with stones and gravels. The trail was named Summit Trail and marked
every half KM and was adequately sign posted. Inclination was generally in 1:4
and 1:3 ratio. The more difficult places were prepared with wooden steps, rails
and plank-walks. It was 6 KM to Laban Rata at 10,730 feet, to which we had to
spend a night for an early final assault to the summit the next morning, to see
the spectacular sunrise over Sabah.
I had constant pain in my back and left side of my waist
with every step of the way. However my knees took the strain and pressure well
with my reliable Chopac knee guards.
We reached Laban Rata which had 76 beds and a cafeteria at
10,737.2 feet about 1530 hours, 6 hours of snail pace. I was literally treading
gingerly, enduring jolts of sharp pain with every mis-steps on the uneven
gravel/stones. I was happy and relieved when we reached Laban Rata. I had
thoughts that I wouldn’t have made it this far. Other groups using the Mesilau
trail came in after 1700 hours.
We had our dinner at 1730 hours at Laban Rata Cafeteria
before climbing up another 200 feet more to the Gunting Lagadan Hut which had
60 beds at 10,903.87 feet for the night. The two other 12 beds huts around Laban
Rata are the Waras Hut and the Panar Laban Hut.
Unfortunately Gunting Lagadan Hut did not have hot water, so
all of us mandi kerbau up there and did
what we could to freshen up. I also started to have diarrhea and had stomach cramps every 30-
40 minutes or so. I went to the toilet no less than 5 times that night. I took
a Buscopan pill, for stomach relief.
I am not sure of the real reasons for not breathing
normally. But I was sure it was not due to the acute altitude sickness (lack of
oxygen) common in high altitudes. It was more likely due to an allergy to
Buscopan or maybe even Hypothermia? My conditions was leading to panic attack,
which was scary. I felt choked and grasped for oxygen heavily in breathing. I
could not lie down. I felt slightly better by sitting up and leaning against
the room wall.
I called Peng and said I should descend immediately due to
my conditions. Peng said it was impossible as there was nobody to take us down
in the middle of the night. Our guide was not with us. I had to maintain
calmness and blow deeply into a plastic bag.
I prayed silently and pleaded for survival for the night.
Not now please. I huffed and
puffed rhythmically and deeply into the plastic bag. 1,2,3,4 inhale deep,
1,2,3,4 exhale long. I challenged to remain calm. I knew a panic attack would
be disastrous. I was starting to have bad thoughts.
Day Three
I survived the five hours “rest” before we descended to
Laban Rata cafeteria for our supper at 0200 hours.
Our final climb to the summit started from Leban Rata at
eerie 0230 hours. It was totally dark, cold and miserable. I was already feeling
weak and exhausted from the previous day’s climb and stomach cramps. I had not
slept a wink as I was having breathing difficulties.
GPS route for Day Three
Burning only 1053 ckal of energy coming down
At 0230 hours we joined the pack climbing in the dark, our
torchlight attached to our heads. After a short climb on wooden steps with
rails, we came to the cliff on the boulder surface. It was now climbing and
hanging for our dear lives onto the ropes provided. This was the toughest and
most dangerous part of the climb for me. I was already tired and weak, without
proper rest the previous night, and I had to pull my body weight up the steep
slopes on the surface of the mountain. I barely had enough strength left at
each pegging of the rope.
We reach the final check point Sayat Sayat at 12,034.5 feet,
our guide told us that we could not to proceed to the submit as we were cut off
for timing. We would not be able to come down in the permitted time, should we
proceed to the top as most of the climbers had gone ahead. Actually the last
final leg after Sayat Sayat is not difficult as the leg covered the plateau
shoulder of the mountain peak. And we had passed the most dangerous part.
We were short
of 400 meters to the summit at Low’s Peak. What a shame. So near yet so far.
However I did not feel defeated as I had done my best and had endured pain and
discomfort throughout the climb. We conceded to the guide and rested for 20
minutes before we started to descend back to Labah Rata. We were still able to
see the sunrise and amazing sights below, albeit at a lower altitude.
Amazing Sunrise
Coming down was more difficult as the Chopac was not as
effective on the knees and my toes were hitting the inside the shoes, causing
more pain. I literally had to hang onto my guide on the way down. No pain no
gain right?
Halfway on the way down, I had the shock of my life, my wife
was resting and sitting beside the summit trail at 3.5 KM at 8,865.8 feet, cheerfully
waiving to me. I must be in heaven when I saw her or was she in heaven? We had
left her sick in the Park HQ the previous day. Apparently she was feeling
better on the third day, she decided to climb the summit trail and to meet us
halfway. How she managed to convince the Park HQ and the Timpohon gatekeeper to
let her through was beyond me. Nobody climbs Mount Kinabalu without a guide. My
wife climbed 3.5 KM all on her own. It was a miracle in itself.
The three of us climbed steadily back to Timpohon Gate and
thence to the Park HQ, arriving around1600 hours. We were all presented with
certificates of achievement by the Kinabalu National Park HQ. We thanked our
guide and proceeded back to Kota Kinabalu that same evening. We then spent
several days more resting in Kota Kinabalu and visiting several of its
surrounding places of interest.
Summary
All in all it was a good climb and worth the effort. Yes it is tough going, but it will be a doable mission with a bit of preparation and training. I had
enjoyed the experience and had met many new friends on the trail. Everybody
called me Uncle as I was the oldest person on the trail. The view was
spectacular, scenic and awesome. It is truly the stairway to heaven. Believe
me.
I recommend all cancer survivors to try to climb Mount
Kinabalu or for that matter any Gunung or
Bukit. It is the litmus test for the positivity in us. Maybe I will be
crazy enough again to complete the 400 meters short of Low’s Peak.
Clap Clap Clap
I beat cancer.
Take care.
Allen Lai
Monday, June 30, 2014
10 Key Hormones
Our body will deteriorate with time as aging and stresses
get the better of us. Fortunately we are able to boost and maintain our body
with proper food, exercises and good lifestyle. Hormones play a major role in
our body. Know your hormone levels with your next medical / blood checkup.
There are 10 key hormones that need to be at optimal levels for
you to be healthy and strong. The perfect 10 diet (10 Key Hormones – The secret to feeling great and
loosing weight) by Dr Michael Aziz, MD is one of the better books on
this subject. He describes the ten hormones below:
SER
|
HORMONE
|
SOURCE
|
LEVELS
|
REMARKS
|
1
|
Insulin
|
Pancreas
|
5 IU
|
|
2
|
Glucagon
|
Pancreas
|
60 ml
|
|
3
|
Thyroid hormone
|
Thyroid
gland
|
181 ng/dL
|
|
4
|
Human growth hormone (HGH)
|
Pituitary
gland
|
< 10
ng/mL
|
|
5
|
Cortisol
|
Adrenal
gland
|
Morning
1180 ng/mL,
|
evening 45
ng/mL
|
6
|
Dehydroepiandrosterone (DHEA)
|
Adrenal
gland
|
400-500
mcg/d/L
|
|
7
|
Estrogen
|
Ovaries
|
<130pg/mL,
|
|
8
|
Progesterone
|
Ovaries
|
<
1.4ng/mL
|
|
9
|
Testosterone
|
Testes
|
241 – 827
ng/ML
|
|
10
|
Leptin
|
Fat cells
|
|
|
As we are more concerned with the level of testosterone, you
may want to know what increases and decreases testosterone.
Foods and factors that increases/ boost testosterone include
eggs, liver, butter, fish, poultry, sex and weight loss.
Foods and other factors that decrease testosterone
production include sugar, fat free food, margarine, excess alcohol, tobacco,
recreational drugs, lack of sex and obesity.
Take care and do boost your hormones to their optimal
levels.
Allen Lai
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