My journey so far after being diagnosed in October 2017. What should I do next?

[Haniff]

Hi All,

My name is Haniff. I am 58 years old now and I was diagnosed with stage 4 advanced prostate cancer in October 2017, which had metastasized to my lymph nodes with a PSA count of 192 . I was given casodex when admitted to hospital and a biopsy was done by my urologist, who is still seeing me every three months. The good doctors over at National Cancer Centre, Singapore, where I reside suggested I do 6 rounds of Chemotherapy.

I completed the six rounds of chemo starting in January 2018 which ended on April 17, 2018. At the same time of my chemo treatment, I was on hormone jabs Luprin given at three months interval. After my chemo, I have been on the same Luprin inoculations since, given at 3 month intervals till to date. My PSA has dropped to 1.93 at the last count on 6 July 2018.

What should I do next? My urologist says to stay on the hormone jabs and monitor the situation. Personally, I feel that I should be doing more or am I just anxious and worried that I don't seem to be doing anything else. On my part, I exercise quite regularly, take supplements and calcium tablets and do vegetable and fruit juicing. I have lost quite a lot of weight (from 83 kg to 75 kg now) and feel much lighter and better. I am still working as a civil servant and hope to retire soon.

I will appreciate any advice or suggestions to help me in my next course of action.

A Big Thank you to all in advance

Haniff

[RyderLake2]

Hello Haniff,

Your urologist is giving you good information. Stay on the Lupron injections until they start losing their effectiveness. Monitor your PSA regularly, it might even go down further than 1.93! The fact that your PSA has dropped from 192 to 1.93 in eight months indicates that you are responding well to androgen deprivation. When your PSA starts to rise you are "castrate resistant" (unfortunate term) and you will be given the choice of two second tier drugs. You will be offered either Xtandi (enzalutamide) or Zytiga (abiraterone acetate) with prednisone. You continue with the Lupron injections. I would switch to a medical oncologist at this point. Good luck! I have been to Singapore. Beautiful city!

[Haniff in reply to RyderLake2]

Hello Brother,

Thanks for the positive information and brotherly support. Yes, Singapore is a wonderful place but...it can be quite expensive to live here...haha...but its very clean and green. Do drop me a note and give me a call if you happen to come by again.

Take care and my very best to you

Haniff

[Schwah]

You may want to go on Zytega now . Recent studies have shown that Zytega with lupron early on is very effective and increased survival by 40%. Its very expensive though so that may be an issue.

Schwah

[Haniff in reply to Schwah]

Hi Brother,

Thanks for the advice and love. I will check on your suggestion with my urologist on my next visit in September.

Will heed your advice and take care My very best to you.

Haniff

[Tall_Allen]

Zytiga can be prescribed (at least in the US) while you are still hormone sensitive. if all the cancer was in your pelvic lymph nodes, you can have whole pelvic radiation.

[Haniff in reply to Tall_Allen]

Hi Brother,

Thanks for the love and support. Appreciate it

The lymph nodes affected are multiple pulmonary nodules and several enlarged aortocaval lymph nodes. And brother(or any other brothers on this forum) if you could help me to decipher this bit of information that I received on my report, will definitely help me understand what I have with clarity, and it may help all in this forum too. I have been getting conflicting info actually:

I was diagnosed as cT3N1M1a possible M1b with a Gleason of 4+3, PSA 192 on 9 October 2017. At that time of crisis and diagnosis, My wife and I did ask the very good doctors to explain, which they did but I must be very honest, at that moment, nothing went through our heads...we were quite in a state of shock and very numb. But now after completing my 6 cycles of palliative Chemo (Taxotere), I am a bit calmer and more apprehensive to my situation.

As to why the sudden asking for information, I read with lots of hope just this morning of 2nd August 2018, on how Lance Armstrong beat the odds with his fatal diagnosis of testicular cancer and his brain lesions, and all at once I want to do the same for myself.

I thank you and all in advance for all help and support

Haniff

[Tall_Allen in reply to Haniff]

I always take notes when I meet with doctors-- it's like "cancer blah blah blah,"

I can translate the medicalese:

cT3 means the cancer seemed to be leaving the prostate

N1 means they saw cancer in the pelvic lymph nodes

M1a means they saw cancer in non-pelvic LNs (as you pointed out)

"possible M1b" means they saw cancer in some bones (probably with a bone scan) but it was borderline so they couldn't be sure

Zytiga would be a good next step. Most of the new drugs require a diagnosis of castration resistance, but Taxotere and Zytiga do not (just an M1 diagnosis)

[Haniff in reply to Tall_Allen]

Hi Allen,

Thank you. Now it all makes sense

Appreciate it. Take care and God Bless

Haniff

[sdnb in reply to Haniff]

I'm interested in why you referred to Taxotere as "palliative chemo"?

Did your doctors refer to it that way, or was this how you felt it should be considered?

Thanks for your honest answers.

"Been there . . . done that."

[Haniff in reply to sdnb]

Hi sdnb,

That was how it was written on my medical report. Actually come to think of it, I was also quite disturb by that term especially after I checked out the meaning of "palliative". On my next visit in September I will check with my doctor. Unless any other brother wants to jump in here and give us an idea why my medical report referred to it as "palliative chemo". Good question sdnb!

Take care and my very best to you.

Haniff

[sdnb in reply to Haniff]

Thanks, Haniff. Yes, the term is a bit concerning, especially if nothing previously had been mentioned. I just had never heard it phrased in those terms. I will be anxious to learn about that after your September appointment. Your reply was very much appreciated. God bless!

[Mormon1 in reply to sdnb]

I hate that word!

[sdnb in reply to Mormon1]

??? What word? "Palliative"? Yes, that's not a word anyone would care to hear, I agree. We had not ever heard it, especially in terms with "chemo", as in "palliative chemo"? That makes one wonder why the word "palliative" is not used in front of any other treatment, i.e. "palliative ADT", "palliative Zytiga", etc. Odd, isn't it? 'Glad you brought that term to my attention. It will be added to our list of questions for the next visit with the oncologist. Thanks!

[ctarleton]

Besides the possible future medical treatments, you might also find some continuing comfort and benefits in a local Prostate Cancer Support Group. For example:

singaporecancersociety.org....

Charles

[Haniff in reply to ctarleton]

Hi Charles,

Thank you brother. Appreciate your advice and support Will definitely check out the support group recommended.

Haniff

[MelaniePaul]

Hi Haniff.

I think that when your doctor suggests to keep you on the three-monthly injections and otherwise monitor the situation after your PSA has dropped so ssignificantly, he seem to be following the new protokol which says that early Chemo and then hormone treatment. So perhaps it is a good idea to wait for a while. However, I think appointments only every three months is a bit too little. Maybe could you discuss with him every two months? And maybe could you ask him to perform scans from time to time to determine whether the cancer is spreading?

Good luck

Mel.

[Haniff in reply to MelaniePaul]

Hi Mel,

Good advice and will check with him if he could meet me within two months as suggested. Actually on my visit to him on July 6, 2018, he even suggested that I could take the Lucrin jab every 6 months with the dosage increased to cover 6 monthly interval. But I played it safe by asking to remain on the 3 monthly intervals instead. As for scans he explained that it will be better to do so at a later date as I did mine quite recently in October 2017. He feels that I am coping well and my PSA is on a healthy decline.

Take care and my very best to you.

Haniff

[Cheahsc1955]

Hi Haniff,

You may wish to consider the natural way to manage prostate cancer.

Check out yapsdiet.com

[Haniff in reply to Cheahsc1955]

Hi Cheah,

I read the story on Yap. God bless. Thanks, appreciate your help brother.

Take care and my very best to you.

Haniff

[j-o-h-n]

to echo RyderLake2:

Switch to or get a Pca Oncologist on your team.

Good Luck and Good Health.

j-o-h-n Saturday 08/04/2018 2:10 AM EDT

[Haniff in reply to j-o-h-n]

Hi j-o-h-n,

Thanks for the support and advice

Take care and my very best to you.

Haniff

[Mormon1]

Stay positive. Pray. Investigate Zytica. I am in your shoes and have been on both monthy Lupron and dail Zytiga since Feb 2018. My last psa was ,04. Your psa is great; especially being on just Luprin. Good luck.

[Haniff in reply to Mormon1]

Hi Mormon,

Thank you for the great support and advice

Take care and my very best to you.

Haniff

[Hidden]

If you have the means to see a prostate cancer specialist then you should do so.. They have higher knowledge than urologist in most cases..Your plan so far is working.. that’s great.. one year in its all a blur. I’m 3 yrs in and my head still spins at the irony of “T “ once being our driving force now will kill us.. we need to stay healthy long enough to benifit from new treatments and drugs coming thru the pipeline in the future. Must be many different types of healers where you’re at . I d look into anything natural where you’re at to build up your immunity.. I think we need to heal mind body and soul in order to be able to accept , and endure ,and still enjoy life and it’s beauty.. let’s work at keeping our friend at bay for as long as possible. A strong reason or hopefully many strong reasons to live will help that effort. Keep in touch ... All questions can be answered by decades of experience.. We can all relate to you we all are in the same boat with APC.. Until one steps into this arena with a tenacious opponent like APC thriving And gobbling up our manhood and strenght in an attempt to kill us the Normal healthy guy could never imagine how it feels ..But I can. Good to talk it out . Especially if you have a lot of questions.. Stay active ! I Wish you a speedy recovery with the best possible outcome for you. Scott 🛶

[Haniff in reply to Hidden]

Thank you Lulu700. Really appreciate your support and advice.

Take care and my best regards.

Haniff

[charlesmeyers1964]

lupron/eliguard shots for me im are painful. remember they reduce your testosterone tha's all nothing to do with the psa. also after time it reduces bone mass in ones body. when mine was done to 3 i quit for 8 months now back up i will go back on time again. i did all the pills and then onto zytiga until i couldn't get it anymore. now went on a new tx called PROVENGE but again yours is manageable.

[Haniff in reply to charlesmeyers1964]

Hi Charles,

Spoke to my urologist and was advised to stay on the Lucrin shots as my Psa seems to be quite stable. Thank you for your advice and support.

My very best to you.

Haniff

[charlesmeyers1964]

down

[johnscats]

Hi have u heard of need oil it supposed to be very good against prostate cancer I think it is an Asian cure worth go ogling it as I believe it is quite freely available where u live best of luck j

[Haniff in reply to johnscats]

Hi john,

No actually. But thanks for the advice and support.

My very best to you.

Haniff

[adipras]

Hi how r u?

Im indonesian but i go to SGH with prof. Henry Ho

Last treatment he gave is radiotheraphy. Next is chemo. But im still avoiding this

[Haniff in reply to adipras]

Hi Adipras

I am feeling great except for a little flu at the moment. Since I last posted, my PSA has gone up to 5.38 on Dec 20, 2019.

Met with my oncologist at NCC Singapore on January 6 and was told that they will want me to go on Zytiga soon. So they asked me to wait and see the next count due in March 2020 and after some scans will put on that course.

As for me ever since Dec, I have totally been on plant based diet and have avoided all sugar, diary except low fat cheese and no meat and poultry. Been walking every week day around 3-4 km as a form of exercise. As of January 1, I am retired after 37 years of civil service work.

Thanks for asking after me, take care.

Haniff

[adipras in reply to Haniff]

Wow, its same with me. Im doing vegetarian too. No rice no sugar. Maybe you share your diet menu here. If you dont mind. Thanks

[Bodysculpture]

Haniff

How about Radiotherapy

Wouldn't you be eligible ?

[Haniff in reply to Bodysculpture]

Hi Bodysculpture

My oncologist does not recommend it and feels that if all fails in later part of journey, may want to re challenge Chemo 🥴

❤️

Haniff

[Bodysculpture in reply to Haniff]

Really rooting for you my brother Haniff

We are in this together

You matter to me remember that

Listen to your oncologist he is qualified in this field

I am not

I do want the very best for you

You are in this for the long haul my oncologist believes at the speed in which new findings are bringing about some remarkable things it wint be long before we die with cancer not from it

I believe Haniff we may be just maybe in time for this discovery

If we are not think of the millions who will go on to live

Its not about me it's about us

I pray every day for those studying daily to keep us alive

I pray for insight wisdom and and guidance

We must give them credit we have come a long long way

[Haniff in reply to Bodysculpture]

That’s the best piece of advice Bodysculpture and the most soothing words. Especially, when you said we are here for the long haul and your best prayers for those who are finding a cure for all of us, God Bless Brother, God Bless.

You take good care ❤️

Haniff