DCMIT's Story

[dcmit]

 

 

Introduction

I live in metro Washington DC, USA. I was diagnosed with Lymphoma stage four November 2011. Due to low metabolic activity entered Watchful Waiting on Oncologist recommendation. Routine PSA test in Oct 2014 had a result of 20. General Practitioner recommended retesting. Results three weeks later was PSA now 40. 

 

Month and year of diagnosis

21 November 2014

 

Age at diagnosis

70

 

PSA at diagnosis

63

 

Gleason score at diagnosis

Never determined

 

Biopsy

No Biopsy performed 

 

Bone scan result at diagnosis

Metastases in pelvis and lower spine L3, L4, S1, and S2

 

Lymph nodes at diagnosis

CT scan shows several lymph nodes positive

 

Capsular penetration (growth through prostate wall)

No visible capsular penetration reported but PET scan show active with low metabolic activity in pelvis and lower spin. Also X-RAy show prostate had broken a small pelvic bone in the left hip.

 

Highest PSA before treatment

90+

Initial treatment - hormone therapy

Hormone therapy Lupron shot now every 3 month. Infusion of Zometa for bone marrow now every 28 days. Six month Gazyva infusions to now treat Lymphoma. At six months added daily pill of 50 mg. Casodex. At ten months I add a daily pill of 10 mg. Atorvastatin.

 

Initial treatment - other

As previously mentioned above. Infusion of Zometa for bone marrow now every 28 days. Six month Gazyva infusions to now treat Lymphoma. 

 

Lowest PSA after initial treatment

72 in January 2015

 

Testosterone after treatment

Do Not know. No measurements performed

 

Other scan result at recurrence

PET and CT scans at 6 months after initial treatment showed no new lesions, 2 liaisons with increased metabolic activity, and the remaining lesions with decreased metabolic activity or healing. 

 

Current treatment status

Continuing ADT treatment as described above with monitoring PSA every three months.

 

Last few PSA scores with dates

May 2016 PSA 24. August 2016 PSA 21. Next PSA 2 Decmber 2016. 

 

Finally

My ADT is allowing me to maintain a high quality of life that I wish to maintain. My Oncologists seems to be expecting me to fail my current ADT and have to move on to other treatments that have more side effects and lower the quality of life. This was quite apparent in our August meeting. He has said as long as the PSA is falling the current ADT will remain as the treatment. 

I am trying to ascertain what the long term effects of my current ADT including the taking of a daily Statin is having on me. I notice I fatigue more now. Blood pressure has risen to 130 over 84 from two years ago of 110 over 70 while the dosage of Losatan HCTZ gone from 50 - 12.5 mg. to 100 - 12.5 mg. I have lost some upper body strength as I now can press over head 140 pounds vice 150 pounds two years ago.

My diet now has a lot less sugar and more vegetables and fruits. I take some supplement that are supposed to have anticancer properties. On the orders of my Chronologist I take a daily vitamin pill with iron and a calcium supplement with vitamin D and K. 

 

Updated

2 November 2016

 

Updated 2 December 2016

 

Received the news that my PSA  value (taken 1 December 2016) is 35.73 up from Augusts 2016 value of 21.  I am still asymptomatic from Advanced Prostate Cancer, but I at the end of two years on ADT2  I have the following symptoms or problems from the ADT treatment increasing hot flushes, increased fatigue, loss of upper body strength, ED, and some increase in breast material.  Seeing my oncologist on 5 December 2016. Should my increase in PSA lead to changes my treatment.  What can I do about the side effects of the ADT?

 

[alanbarlee]

G'day 'dcmit',

 

Welcome to the fraternity here in Oz. So sorry that you seem to be coping with more than most guys approaching their mid-70s: however, your blood pressure is looking good, and most of us wouldn't be lifting 140 lb an inch off the floor, much less doing so overhead!

 

Your oncologist seems to be giving you high quality care - and your exercise, diet and statin use are all positives. You probably know that there are more great options available to you if (when) your PSA stops responding to ADT - abiraterone, enzalutamide, docetaxel and cabazitaxel are all well proven for the majority of men with Stage 4 disease. Beyond those is the very promising 177-lutetium-PSMA treatment, which is getting great clinical trial results here and elsewhere - and coming up are some new and promising results with immunotherapy.

 

You'll have plenty to chat about with your oncologist - and probably for many years yet!

 

Good luck - and please stay in touch.

 

Cheers,

Alan 

[Sisira]

Hello "dcmit",

You have described your PCa case very clearly with  all the key information you have up to the present time, which I appreciate very much.

It is quite unfortunate that at the time of diagnosis itself you had advanced metastatic PCa with identified bone and lymph node metastases. Yet you are not mCRPC because still your cancer is responding to the hormone therapy. As your oncologist foresees, when this responding stops ( only the time can prove ) your cancer will go to the stage of  'metastatic castration resistant prostate cancer' ( mCRPC ). I would like to give below some medical facts for you to understand better your present treatment protocol and the choices for future treatment protocols as well so that you can discuss them with your oncologist as a well informed cancer patient. I believe it will build up your confidence level as well.

 

Although you have not determined your Gleason Score by a needle biopsy or surgery this is a very important pathological risk factor mainly to understand how aggressive your PCa and in making treatment decisions. However, in your specific circumstances it has become less significant because the cancer has reached an advanced metastatic stage even before it could be known. This is the situation for all the cases which do not undergo needle biopsies or surgical biopsies. Sometimes biopsies can also give false negative results. On the basis of Gleason Score : Gleason 6 is low risk, Gleason 7 is medium risk and Gleason 8,9,and10 are high risk ( Most aggressive and spreading fast ).

 

There are various types of treatment available for PCa : Surgery, Radiation, Hormone Therapy, HIFU, CRAYO Therapy and there will be more to come with advanced bio technologies. The most important question one must ask regarding any of these treatments is can this treatment kill my cancer cells or just suppress their growth and progression ( spread ) only for a limited period of time?The treatments that lead to killing the cancer cells are called "curative" because a cure is possible only if you can kill and destroy the cancer cells and the treatments that can only suppress the growth of cancer are called "palliative". Therefore all kinds of hormone therapies are palliative.

 

Another very important fact about the nature of PCa is the cancer is not homogeneous ( consisting of similar cells ). Only some cells are hormone sensitive ( Depend on hormones for their growth and survival ). There are other nasty cells which are hormone insensitive ( They don't need hormone for their growth ). They have other strange ways of surviving and grow slowly and silently and become a real monster unless they are killed early enough.

 

Now with these two knowledge aspects you can better understand your present treatment regimen and also the future treatments you may receive when the initial hormone therapy fails.

 

Presently you are on ADT2. Androgen Deprivation Therapy with Lupron. Lupron will suppress the production of testosterone by the testicles and make the cancer cells starve for their food. This will suppress their growth and progression. Some cells also may undergo apoptosis ( cell death ) but many will remain dormant only. PSA will go down. Sooner or later ADT will become ineffective and the cancer cells begin to proliferate again. When the first line hormone  fails you can go for second line hormone therapy but you should not forget the fact that the nasty hormone insensitive cells from the very beginning were working out their own plans without giving a damn to any of the hormone treatments that we use to buy time because no one was able to destroy them. Casodex is also a part of ADT being an androgen inhibitor. It will block the androgen receptor binding in the cancer cells. There is little amount of androgen synthesized by the adrenal gland and in advanced stages of cancer, cancer cells become chemical factories; they start making their testosterone from cholesterol in the blood and start using other growth factors as well. That is why it is very difficult to control the cancer at advanced metastatic stage. But you can delay their final and devastating blow by using various treatments strategically by using stronger new drugs.

 

So what are the ways to kill the cancer cells including the most nasty type - hormone insensitive? You are most fortunate and it will be much easier and can even cure the PCa if you are diagnosed early enough. Radical Prostatectomy ( surgery/RP ), Radiation, use of antimetabolites/cytotoxic drugs ( chemo drugs ) can kill cancer cells depending on your pathological status.

These aggressive treatments are associated with significant side effects but they can be manged with proper understanding and planning. Our prime objective is to overpower the cancer and live because once you are diagnosed,  it is a grave threat to our life.

 

When you are under ADT over a long period of time you will be subjected to some significant side effects because lack of male hormone to the body obviously  affect the vital metabolic functions. Some of the most important ones are : bone health ( bone mineral density ), cardio vascular functions, blood sugar levels, liver functions, erectile disfunction ( ED )/libido, loss of muscle mass, body energy levels etc.

You are taking Zometa to maintain your bone health. This is a bisphosphonate which may some times cause ONJ ( osteonecrosis of the jaw ) and you may face trouble if you do any dental work during the period of its use.

You have to take statins and check your blood cholesterol levels to prevent cardiovascular issues. Take necessary medicine to keep the blood pressure under control. As you go on adding more drugs to your treatment protocols your having done the following tests will be really useful :

 

- Lipid profile ( every three months )

- Blood sugar tests ( FBS and HBA1c ) every three months

- Liver profile ( every 3 months )

- Scr. & GFR ( every 3 months ) for kidney functions

- Vitamin D3 ( colecalciferol ) - every 3 months ( maintain between 60 and 80nml/L )

- Ionized Calcium ( every 3 months )

- Testosterone : T ( to ensure Lupron is working well )  < 20 ( before treatment 400 - 800 )

- Dihydro-testosterone ( DHT )   < 5  ( DHT is 10 times stronger than T in fueling PCa growth 

- DEXA scan - to check the bone mineral density ( half yearly or once a year )

- PSA ( the most important blood marker you always do check to determine your prognosis )

 

[Edit - In Australia it may not be possible to have some tests as frequently as Sisira suggests.  This is because of restrictions under Medicare.  For example, there are restrictions on the frequency of Vitamin D3 and DEXA testing.]

 

Gallium 68 PSMA PET/CT Scan is the most powerful in identifying even very small metastases in any part of your body and your present PSA level is enough to qualify you for this scan. ( starts from PSA > 1.0ng/ml ). Similarly C11 Choline PET/CT Scan ( available only at Mayo Clinic ).

 

The following drugs are also used in treating metastatic castration resistant advanced PCa. ( When your present ADT fails )

 

- Abirateron ( Zytiga ) : Unlike Lupron, Zytiga strongly inhibits the production of androgen not only by the testicles but also by the     adrenal gland and the tumor tissues as well.

- Enzalutamide ( Xtandi ) : Action is similar to Casodex but it is a much more powerful androgen receptor antogonist which shuts      down the androgen receptors of the cancer cells.

These two treatments come under second line hormone therapy.

 

Some innovative oncologists combine with these treatments, high doses of Metformin ( given for diabetics ) because at castration resistant stages cancer cells use insulin like growth factors ( IGF ) for their survival. And also statins to lower the serum cholesterol levels since the cancer cells also may start to synthesize hormone themselves from the cholesterol in the blood. 

Various steroids are also used in combination.

 

- Docetaxel ( chemo therapy ) : using antimetabolites/cytotoxic drugs to kill cancer cells

 

- Radium 223 ( Xofigo ) - Strong whole body treatment for bone metastases by using a radio active substance ( highly targeted 

                                        treatment )

- Provenge : Sipuleucel -T : Drug to use the immunity system of the body to kill PCa cells.

 

[Edit - Radium 223 is not available under Medicare in Australia.  Provenge : Sipuleucel -T is not available in Australia.]

 

There is no way and also it is not proper to make appropriate treatment decisions without discussing with your oncologist. It is also an important thing for your oncologist to be one who is specializing in the treatment of prostate cancer and also quite knowledgeable on new drugs and innovative/advanced treatment strategies.

 

Eat healthy food with plenty of vegetables excluding red meat and dairy products.

Do regular exercises ( walking briskly/daily/1 hour - minimum ) - Best to overcome fatigue and cardiovascular problems.

 

Always maintain a positive mental attitude. Be brave, Never say die. Fortune favours the brave!

 

PCa is a DNA and genetic issue. It is like your thumb print. You can't match it exactly with anybody else's. So no statistics or even your doctor can predict accurately how long you can live. If you begin to count, how many people known to you have passed before they reached 72. That means even today you are a winner and it should continue for many more years to come.

 

I am not a medical doctor. I was diagnosed for advanced localized PCa by a 12 core needle biopsy in February 2015 at the age of 68. Underwent Radical Protatectomy in March 2015. Pathlogy : T2c No Mx , Gleson 9 and positive surgical margins. PSA before surgery - 7.9ng/ml and 3 weeks after - 0.07ng/ml. Immediately followed with Radiation ( IG-IMRT 36 sessions - 76Gy ) coupled with ADT2 ( Zoladez + Calutide - like Lupron and Casodex ). This initial treatment is going for 2 years and will be completed in March 2015. Since starting treatment my PSA is remaining at 0.00ng/ml.

 

For me "knowledge is power" and it is as important as any medicine or even much more in scope and application. 

Besides my own battle it is a great privilege for me to help others who have joined the same journey, with my knowledge and experience. Most humbly I should say I am still in the early stages of my learning curve so far as PCa is concerned. 

 

I wish you good luck and all the confidence to mange your case successfully.

May peace and happiness be with you at all times!

 

Sisira

 

 

 

 

 

 

 

                               

 

 

 

 

[dcmit]

To Alanbarlee and Sisira,

 

  Thanks for your support, information, advice, tests to get my Oncologist to perform, and expectations from current ADT and future therapies beyond ADT.   Most of the US Medical data available readily to me seems to indicate death in about four years after a the diagnosis becomes Metastatic Castration-Resistant Prostate Cancer (mCRPC) (I have also found the Prostate Cancer Groups in the Meto DC area are not for those who have advanced to metastatic prostate cancer or to mCRPC).  I have also begun to explore the posts available to members.

 

Sincerely,

 

dcmit

[alanbarlee]

Just a quick point on your 'four years left' forecast - I've had castrate resistant metastatic PCa so far for 5 1/2 years (13 years since RP), and I'm still going strong with Zoladex, Zytiga, prednisone and dutasteride (PSA 0.1 and stable for 12 months) - so, given your untapped treatment options you've most likely got many good years ahead yet!

Best wishes - and stay positive,

Alan

 

 

[Sisira]

Just see what Alan says! This life expectancy of 2 to 5 years is an old paradigm based on standard thought and decades old statistics. Now lot of new drugs and combined treatment strategies have come to manage the disease even at mCRPC level without much problem.

But you need an innovative and highly skilled oncologist. All are not the same because they have the same professional qualifications.

I just studied a case yesterday, mCRPC at the time of diagnosis who has been treated aggressively by an excellent doctor and he has reached the 12 year mark since diagnosis. His PSA as of today remains undetectable!

 

Yet another shocking case : Man diagnosed at the age of 72 with mCRPC  Stage iv with PSA 7000ng/ml in July 2008, treated with ADT protocols, PSA after some time, nosedived to 16.0ng/ml; treatment halted for 6 months to attend to his cardiac issues ( heart attack ). PSA had gone up to 15,000ng/ml when treatment resumed; now come down to 400ng/ml.He is still surviving with satisfactory health and also active at the age of 80. Can you imagine!

That is why no body can predict accurately how long one will survive with the PCa.

 

I am a member of three very active prostate cancer support groups, two US-based and this one Australian based and I interact with the members on a daily basis via e-mail. All three are excellent and one can benefit immensely although the approach adopted by the site administrations are slightly different.

 

If you wish you may join them too being in USA. Regarding your specific case, in one group I have found many who have been diagnosed with mCRPC and receiving treatment from very good doctors and managing their disease quite well. There are also members who have excellent knowledge coupled with experience who are ready to answer any of your questions. This site is at     www.healthunlocked.com  . You can post your case with a brief but complete history of your case and seek help. Definitely you will receive some good replies.

 

I have also posted my PCa story at www.yananow.org founded by the legendary late Terry Herbert and I keep on updating my case every three months there, along with  the stories of many others. These stories alive with regular updating are really informative. All have given their e-mail addresses and we easily communicate with each other.

 

Having said about other PCa support groups I am reminded of an old song which I liked very much during my school days ( Last line only )...."I like you dear, but I love Montego Bay" 

I love www.JimJimJimJim.com

 

Cheers,

Sisira

 

 

 

I love www.JimJimJimJim.com !

...

 

[dcmit]

To alanbarlee and Sisira,

 

   Most men in the United States have not found the support I have in web sites like this one.  Most men I know and or have met in the US with Advanced PC seem to be going it alone.  This may be because the Prostate Cancer Groups I know in the metro DC area are not for Advanced PC, but for the newly diagnosed seeking advice on which prostate removal technique is best, how to deal with the after effects of their prostrate treatment, or those past prostate removal whose PSA has started to rise and fear it is metastatic and are looking at their treatment options.

 

Sincerely,

 

dcmit

[Sisira]

Dear DCMIT,

 

I respect your feeling of trust and secured belongingness here with this website and Australia should be proud of your praise.

But all the same I wonder how you can miss John Hopkins Hospital, Mayo Clinic, Memorial Sloan Kettering Cancer Institute...so to speak of a few with their state of the art involvement in treating prostate cancer and both world best doctors and the patients who receive their treatments, associated with them. I have no idea where this metro DC area is. I am from a very small Asian country - Sri Lanka where I cannot even find a single Oncologist who is specializing in treating prostate cancer. I don't take it as an insurmountable impediment in my battle.

Just try the the two website addresses I have given you. I have learned a great deal from them and also from the updated research information/advice provided by this site very frequently, mainly related to advanced prostate cancer, which I appreciate very much. 

 

Shall we try and see?

 

Hoping for a useful outcome for you with this input,

 

Sisira