Fight, fight, fight - struggle, struggle, struggle.  Day in and day out something will crop up to make my life difficult.  I believed my cancer is now under control.  But to reach this stage I have to go through a string of treatment, injections, medication and change of medication.  My cancer will not kill me yet but the side effects will, or at least will cripple me 😄.  

   

I have been taking abiraterone for about 5 months after trying out Xtandi (enzalutamide) for about a year.  Abiraterone seem to be able to suppress my testosterone more effectively thus bringing down my PSA reading.  This is good news, BUT, the side effects are many.  The side effects of abiraterone, steroid plus low testosterone count really caused havoc to my daily life.  

Insomnia: Sleepless night is very common now.  

Diarrhea/constipation: Every few days I'll get diarrhea and then followed by constipation.

Blurry eyes: My eyes will blur after taking abiraterone and this can last half a day or the whole day.

Mood swing: I have mentioned about this earlier.  Yes this is horrible 😞

Body pain: I sometimes feel like 90 years old or older.  I can't stand, sit or walk for long - a few minutes and I'm exhausted.  I need to take my pain killer every day.

There are many other side effects which I have to deal with my own way.  I am writing all these "nonsense" just to ease my pressure, better than talking to family members who are very supportive. I don't want them to worry too much.

Yes!!

 Yes! Another good result.  My latest blood test done on 31st Oct. showed my PSA dropped to 14 ng/ml.  September's result was 20.66 which was a huge drop from 180, test done in August.  The combination of abiraterone and dexamethasone really works for me.  

This drug is very strong in suppressing testosterone.  Thus, side effects are many and expected.  Well it's either my survival or the cancer spreading.

Good result!

 Very good.  My latest PSA result for September dropped to 20.6 ng/ml from a high of 180 in August.  I was worried that it might go up further.  What a relief.

This could be due to many factors, such as, taking the full dosage of abiraterone, changing prednisone (steroid) to dexamethasone and keeping a strict diet with limited consumption of sugar.  Which ever one is the reason for this good result doesn't matter as I find it is worth all the pain and anxiety in the earlier months.  However the stronger pain killer, tarjin, really help me to overcome my bone pain.

Despair

 

 As I've mentioned before my mood swing can be bad at times.  Sometimes when I hit rock bottom everything seem hopeless.  I really hate all the medication I have to take to keep me going.  My mental state has been taxed beyond the limit and the worst part is I cannot open up to anybody as it can cause anxiety and worry to people near me.  I don't know how much more I can take.

Hang in there

 Yes, hang on and hang in there, don't give up.  My PSA, instead of free fall it is on the way up high.  The latest result - 180.  Requested my oncologist to change the steroid which I am taking with abiraterone, prednisone.  The new steroid I am now taking is dexamethasone.  I have been looking for answers on why my PSA is on the way up while I am on abiraterone+prednisone and this is what I've found: https://pubmed.ncbi.nlm.nih.gov/30099821/ (the change of steroid might help to stabilize the PSA)  

I do not know how's the reaction of others taking the full course (4 tablets) of abiraterone but I could not take it as my body ache is very bad.  My spine, ribs and pelvic bones hurt so much you become miserable the whole day.  To manage the pain I took oxynorm (oxycodone 5mg) morning and night but could not help much.  The oncologist then changed to targin (oxycodone 10mg) which seems to help a lot.  

Why me, why me, why me.

My 5th year of cancer

 

 The past few years I felt more energetic, more active and more positive.  Especially last year I really feel good as all my test result and CT scan came back with good news.  But this year is different.  My PSA keep going up and now my fingers are numbed and have no strength - sarcopenia (I think).  My spinal cord and ribs ache so much I could not sleep, swim and do my usual morning exercise.  Feels like I am going downhill.

 

Abiraterone Acetate

 After a year on enzalutamide (Xtandi) I cannot control my PSA which keeps going up to more than 100 points.  I cannot take the full course which should be 4 tablets a day as even when I tried to take 3 tablets a day I suffered extreme body ache.  Now I changed to abiraterone plus prednisone (steroid).  

I started with 3 tablets on my 1st bottle.  Now I am on to my 2nd bottle and I am going full course, that is, 4 tablets a day.  I will be having my blood test early next month and I hope to see better result.

In order to save costs I am taking generic product and purchased online.  This way I saved 50% of the cost.

 Our Malay language can be quite colourful.  If you do not suffer any injury you would not know what pain is like.  So far I have used up a huge sum of our savings to keep me going and I am lucky to manage to keep my cancer under control.  I do not complain or whine about the pain I have to endure or the mental torture that's going inside me.  I look as normal as possible in front of relatives and friends/neighbors, so much so people thought I have recovered.  Everybody said I look good! Yes everybody looks good but you would not know what's "boiling" inside them.

Don't quit

 This is my experience.  Life with cancer is not a bed of roses but a bag full of pain and misery.  Every treatment/medication has side effects.  Some slight and manageable but some can be extreme and unimaginable to ordinary people (non-cancer).  I always tell myself that nothing can scare me now after my tolerance level has been tested to the full limit.  

Fear.  This is something all cancer patients have to face.  Fear of the unknown.  Fear of your cancer spreading and fear of damage to other parts of your body.  Every now and then fear will make you worry to death.  

But I do not give up.  Tomorrow will be a better day (sometimes I am not that sure).

Chemotherapy

 I had my chemo in 2019.  Six months of torture for me.  Every three weeks one cycle and double the dosage.  After each chemo I needed 10 days to recover from the terrible side effect.  

After each chemo it is not possible to have much sleep for 3 nights.  Diarrhea and vomiting plus a range of other side effects really drain all my energy.  My worst nightmare.  After finishing my 5th chemo I was a total wreck and I almost could not make it to my 6th.  The oncologist had to cancel further chemo after my 6th  as I was more like a zombie then a patient.  Life without cancer - a wonderful life!

OMG

 Last week had my usual check up.  My PSA is up again.  It seem to be going up the last few months.  Although I am on enzalutamide (Xtandi) I did not take the prescribed dosage as I could not stand the extreme painful side effect.  The oncologist decided to change to abiraterone acetate for one month to see the effect.  Also change is my eligard injection which was changed to lucrin (these are androgen deprivation therapy medication).

These medications are very expensive in Malaysia as they are imported from USA.  I am devastated by my high medical costs just to stay alive.  

Life is not fair

 

My long journey with cancer

Oh how time flies.  I am now at the end of my 4th year struggle with cancer.  I am still under active treatment, which means I still have to go to the hospital every 3 months for medical check, blood test and injection (ADT - androgen deprivation therapy).  This injection is in addition to the medication  I'm taking, Xtandi.

          There seems to be no end in sight.  It is like a life long journey and the longer it drags it's getting            more  tiring.  Anyway the consolation is that the 2 tumors, one at my pelvic bones and the other             between my shoulder blades, had almost disappear after my radiotherapy and 6 months of chemo.            Now I do not have to take my painkiller (oxycodone) 3 times a day, just once a day.

        I am now like a handicap person due to all the medication, injection and chemo and also due to             my already badly damaged bones.  I'm also not spared the anxiety and panic attack and I really              hate    the mood swing.  Well I am very fortunate to have a very supportive family which makes life         easier.