Tried everything else except chemo

[TONAR]

Hi,

I was diagnosed 3 years ago with a PSA Of 640 and many bony mets.  Two years of Zoladex and Bicalutamide brought things under control - PSA came down to 4.  Then PSA rose to 19 and I have been on Xtandi for 9 months.  It worked initially, but my recent PSA readings over 6-weekly intervals have been 4.5, 8.7, 17.0.

I have an appt with my Oncologist on Friday and I imagine he will now recommend Doxatacel.  Is there anything else I should be asking about BEFORE I embark on chemo?  Am I closing off options by choosing chemo?

Any advice gratefully received.

Cheers,

 

Tony

 

[Sisira]

 

Hello Tony

Sorry to hear about your case - advanced metastatic PCa with high PSA at the time of diagnosis. You have undergone the usual treatment protocols with ADT2 ( Zoladex and Bicalutamide ). You could have further added Avodart ( Dutasteride ) a 5Alpha Reductase Inhibitor to make your protocol more effective - ADT3 which will prevent DHT entering the cancer cells to support growth.

 

(Moderator  - It can be difficult in Australia to find medical oncologists who are willing to add Avodart to ADT)

 

Use of Xtandi indicates that the original ADT protocol has failed and  your disease has entered the mCRPC ( metastatic castration resistant prostate cancer ) meaning the cancer is not responding to hormone therapy any more. Have you tried Zytiga ( Arbirateron ). Usually Xtandi is given after Zytiga but there is no hard and fast rule.

 

(Moderator - In Australia the Pharmaceutical Benefits Scheme will only subsidise either Xtandi or Zytiga but not both)

 

In any case all these hormone therapy type of drugs are palliative treatments and we can only buy time until the cancer will hit us with the full force. Another important aspect that many of us fail to learn is the fact that PCa is heterogeneous. That means that there are different varieties of cell populations in the same PCa. Mainly the two types : hormone sensitive ( depends on hormone for growth ) and hormone insensitive/refractive ( for these cells hormone or hormone deprivation therapies are irrelevant ). Often such dangerous cells are at first in smaller number but in time to come become very aggressive/proliferate rapidly and also they are PSA negative ( do not produce the antigen ).

Chemotherapy is a sytemic ( wholebody ) treatment and also cytotoxic ( killing cells ) which is not a palliative treatment like ADT.

Side effects are known to be severe but can be tolerated by many depending on the age and the physical fitness of the individual. For PCa the usual chemo drug used is Docetaxel ( Taxotere ). For PCa chemotherapy given at the late stages of the cancer is less effective and the treatment is more synergic when given in combination with other drugs like Carboplatin.

At present more and more innovative oncologists prefer to give chemotherapy at a much earlier stage along with ADT ( Zoladex ) which is supposed to give significant survival benefits. ( Trials are in progress to publish the proof/findings )

Added to the ADT protocol there is a very new approach practiced by still a very handful of oncologists who go out of the box to treat advanced PCa, called BAT ( Bipolar Androgen Therapy ). That is to give a very high dose of Testosterone monthly whilst you are undergoing  ADT. This shock treatment is said to kill the castration resistant cancer cells.

 

(Moderator  - At present the use of BAT is generally limited to clinical trials in the USA. )

 

As you know some may not respond to this, for that matter to any treatment because PCa is a DNA/Genetic issue very specific with the individual.

Please make it a point to read and learn the side effects of chemotherapy in treating PCa in the internet.

Hope these information will help you to understand your own pathology and prepare better to seek the most suitable treatment approach to mange your case successfully.

It would have been better had you given your age, more details about your pathology including the Gleason Score etc. and what CT sans you have done to detect the metastases, bone or other types. Choline C11 PET/CT or Gallum 68 PSMA PET/CT Scan ?

 

Wish you good luck

 

Sisira

[TONAR]

Many thanks Sisira for your very informative response.

I am 68 - otherwise in good health and relatively pain free until a week ago.  I had a Gleason score of 9/10 three years ago.

I have CT scans plus nuclear bone scans.

I'm a bit confused why BAT would help with castrate resistant cancer.  If testosterone is not an issue, why would shock doses of it affect cancer cell growth.

However, I'll talk to my Oncologist about it and also about Lutetium PSMA therapy, of which I understand there are Australian clinical trials commencing soon.

Cheers,

Tony

[Guest MalcolmT]

Tony

I am in a similar situation to you. 70 years old. My PC was diagnosed in 2011 with a Gleeson score of 9.

The PC had spread to my bones and I started ADT. Lucrin (ongoing), Nilutimide replaced by XTANDI when my PSA rose and, XGEVA (ongoing ) to harden my bones.

All was going well until recently when I began to feel unwell. Tests showed that my PSA had doubled over a short period of time and that the PC had spread. My oncologist stated that chemo (Carbazitaxel) was the next step for me. Timing could not have been worse as my wife and I are about to travel overseas. 

Fortunately my oncologist believes that we should fit my treatment around my life and not the other way around. So I have received two chemo sessions and will resume chemo the day after we return home. This was a good decision as my PSA has fallen dramatically after the first session and I am feeling relatively well again. By the time we leave I am sure that I will be feeling much better and will enjoy our trip symptom free.

Regarding chemo - this is the first time that I have had it for PC however I have had it previously for Lymphoma which was diagnosed in 2013. The side effects are not great but I have found that they are manageable. For me, the decision to have chemo was an easy one to make.

On a lighter note three of my grandchildren were born in 2013, 2015 and 2017. I am looking forward to the reactions of the elder two when my hair and beard fall out.

I hope that this helps you in some small way.

Best wishes

Malcolm

[TONAR]

Thanks Malcolm, that's enormously helpful - and encouraging.

I'm not sure what the difference is between Carbazitaxel and Docetaxel (which seems to be the flavour of choice with my Onco.)

I guess hair loss is a given - is it?  Small price to pay I guess.

Cheers,

Tony

 

[Sisira]

Yes Tony, Bipolar Androgen Therapy ( BAT ) is a paradoxical treatment for castrate resistant PCa whereby 1000 - 2000ng/dL of Testosterone is injected while the ADT treatment has brought down the androgen to the castration level. Dr.Sam Denmeade, Prof.Oncology at Johns Hopkins Hospital, Baltimore ( USA ) is in the forefront of this research and practice of this unique treatment approach. There was an article on this subject posted here by the Administrator Jim some time ago.I don' know how to get at the past postings. You just try www.ancan.org/bat-presentation. Then select "here" for the presentation. Stop the presentation that begins and select the "Bipolar Androgen Therapy" appearing on on the right hand side by jimjimjimjim ( This presentation is very clear ).

Anyway most of the oncologists don't like to use drugs and treatment methods unless they have been subjected to the usual process of trials running for years and the approval of the medical bodies appointed by the governments. They follow one after the other in the same conventional sequence. Not innovative! Not strategic! Nothing outside the box ! A - B - C - D - E - F in that order ( "F" for failure! ) What to do? This is a tragedy . 

I also wish to give you little bit more information regarding Chemo Therapy you are about to receive that can help you.

Chemo drugs normally used to treat PCa are Docetaxel ( Taxotere ), Cabazitaxel ( Jevtana ) Mitoxantrone ( Novantrone ), Carboplatin ( Paraplatin ), Invariably the first choice is Docetaxel followed by Cabazitaxel.

Chemo drugs are toxic and attack cells that are dividing fast, which is why they work against cancer cells. But other cells in the body such as those in the bone marrow ( where new blood cells are made ), the lining of the mouth and intestines, and the hair follicles also divide fast. These cells can also be affected by chemo, which can lead to side effects. Severity of side effects depends on the dose of drugs given and the length of time they are taken. Thus the side effects may include :

 Hair loss, mouth sores, loss of appetite, nausea and vomiting, diarrhea, increased chance of infection ( from having too few white blood cells ), easy bruising or bleeding ( from having too few blood platelets ), fatigue ( from having too few red blood cells ) 

These drugs also can affect nails and cause peripheral neuropathy ( numbness of hands or feet, may be both. It may take long to heal whereas other side effects usually subside when the treatment is discontinued ).

Chemotherapy treatment is given in cycles. Chemotherapy drugs are anti-cancer drugs and when they enter the blood stream and go throughout the body, making the treatment potentially useful for cancer that has spread ( metastasized ) to distant organs.

They may slow the cancer's growth and also reduce symptoms. Still chemotherapy is very unlikely to cure prostate cancer.

This is the price we have to pay when oncologists go in the A - B - C - D - E - F order. We must have an early strategy to hit the cancer as hard as possible and destroy the cells at the earliest instance when the cancer burden/volume is at its lowest. This I think is the only life-saving approach for high risk prostate cancers of GS 8,9,and10 or high risk by any other pathological factors at diagnosis.

For your information, I was diagnosed in March 2015 at the age of 68 when my PSA was found to be at 7.9 at a routine blood check up with no urino-genital symptoms. A 12 core needle biopsy diagnosed GS 9 PCa. In April of the same year I underwent Radical Prostatectomy, My PCA was organ confined without any kind of spread. Yet since it was high risk type, immediately after surgery I underwent IMRT ( radiation - 36 sessions ) and then followed by ADT2 continuously for 2 years ( ending 30.4.2017 ). I wanted to hit my high grade cancer as hard as possible from the start not caring for the side effects and I want to continue this approach in managing my case. My PSA checked every 3 months during the whole period of treatment has remained at 0.008ng/ml. My dieting pattern is about the best for PCa and I do regular exercises and also pay lot of attention to maintain my general body health despite the PCa. I am living in Sri Lanka, a small country with very limited medical facilities. I have a very positive mind and handling my case with lot of confidence.

I have done lot of useful reading in text books as well as in the internet on the subject of PCa to understand my disease management well and also joined three very useful PCa Support Groups. If you wish you may contact me using my e-mail address too given below.

*********@gmail.com

 

(Moderator - To avoid spam, it is recomended not to display email addresses in posts.  Sisira may be contacted by other members at the email address that he has given in his member profile.  Alternatively ,  send a personal message)

 

Cheers

Sisira

 

 

[Sisira]

P.S. Tony, since of late I have herd about the Lutetium PSMA therapy that you have mentioned. I know this treatment is practiced at Peter Maccallum Cancer Centre in Melbourne but do not know about the success rates. This is properly knowen as Lutatium PSMA Radionuclide Therapy.Lutatium-177 molecules that act like tiny heat seeking missiles labeled to PSMA ( prostate specific membrane antigen ). They travel through the body and attach to cells producing PSMA ( only prostate cancer cells have membrane antigen ) Once attached, they are taken into the cells where they begin to unload their radiation. Radiation will definitely kill the cancer cells.

Gallium 68 PSMA used in PET/CT Scanning also has a similar action of attaching to the PSMA to light up the cancer cells for imaging but Lu-177 emits much stronger radiation causing the death of cancer cells. Radium 223 ( Xofigo ) is capable of selecting bone mets only and destroying them. However, yet we don't have data on long-term response and toxicity of LuPSMA Therapy.

It will be worth discussing this novel treatment as well with your Oncologist and I would appreciate if you could give us your  feed back on same.

 

(Moderator  -  LuPSMA Therapy is generally only available through clinical trials.  As Sisira points out, we don't have data on long-term response or toxicity on this therapy. The Peter MacCallum Cancer Centre in Melbourne is currently conducting  a clinical trial (recruitment for this trial has closed) with 30 participants. Peter Mac is planning a larger trial later this year.)

 

Sisira

[TONAR]

Thank you Sisira, you have been most helpful.

I will definitely discuss with my Oncologist today and let you know the outcome.

Best wishes,

Tony

[Paul Edwards]

My  medical oncologist said that the side effects of Docetaxel are not as bad as most men fear.

 

Having said that, the side effects of Docetaxel can vary from individual to individual.

 

I found that fatigue was the main side effect of chemo. Of course, loss of hair.

 

Most men talk of "tolerating " chemotherapy.  It affects your quality of life but you put up with it. You have your treatment & feel crappy for the first few days, you avoid places where you might catch an infection & gradually you get better until 3 weeks later it's time to do it all again.  And this keeps repeating every 3 weeks!

 

It is possible to get a severe allergic reaction to chemo, although this is very infrequent.  If you are going to suffer an allergic reaction, normally this will happen on the 1st or 2nd treatment. This is why a nurse sits with you for the first 20 minutes of the 1st and 2nd treatments just in case an allergic reaction occurs. 

 

In my case the 1st & 2nd treatments went smoothly.   However on my 3rd treatment I suffered an unexpected  severe reaction.  4 Nurses worked successfully to stabilize me. After they stabilised me, the chemotherapy was continued until completed

 

I'm aware of several members of the Advanced Prostate Cancer Support Group who have been hospitalized during the course of chemotherapy because of infection or low white blood cell counts.

 

Jim did a good post last year on Avoiding Infection during Chemotherapy.  I'd highly recommend having a look at that post.

 

I'm interested in the studies on fasting & chemotherapy.  After discussing this with my medical oncologist, I fasted with some of my later chemo treatments.  I have previously posted in these forums about the studies on fasting & chemo.

 

Peripheral Neuropathy is a potential side effect. At the 2016 PCRI Conference in Los Angeles Professor Mark Moyad recommended Alpha-lipoic acid (ALA) as a supplement which could reduce peripheral neuropathy. Many of the delegates who had had chemo told stories of their successful experience using ALA .

You can read more aboutthe science supporting  this in The Supplement Handbook by Mark Moyad.

[Sisira]

Hi Paul,

Glad to hear from you. I was about to inquire from Jim regarding your health condition because when I was in Melbourne during Christmas time I was unable to meet you as planned. You informed me of your unexpected and sudden illness being hospitalized 

for a spinal chord compression. Hope everything is under control now.

God bless you and my best wishes too!

Sisira

[Admin]

Hi All

Back from my perignations.

My 2c worth:

I am not a doctor, but:

• Taxotere (Docetaxel) is most often the first chemotherapy used.
• B.A.T. is quite experimental and there is no trial open in Australia at present.
• Lutetium-177 treatment has no trial open in Australia at present.
• Carboplatin and Etoposide trials in men with progressive metastatic castration-resistant prostate cancer (mCRPC) showed that this form of combination chemotherapy doesn't work well and is quite toxic. In a more recent trial 2 men who had an unusual type of prostate cancer that does not express nuclear pAkt on tests did respond to a Carboplatin combination.
• The advice on Taxotere (Docetaxel) treatment can be found here:

Jim

[Paul Edwards]

Thank you for your kind wishes, Sisira.