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kmclark1
Posts: 12
Joined: Dec 2013

Familair story, and I am looking for your thoughts and or advice.

 

During my annual physical my PSA was 130.  THis was up from 3.2 two years ago.  I was refered to an uroloigist whom performed a targeted biopsy.   As a result my Gleason socre was 8.  The bone scan indicated mestastases in the back and hips.

I did not and still do not have any symptons.

i was immediately given a shot of Firmagen.  Nov 2013.

Following the inital disbelieve, I arranged visits for second opinions to Tufts Medical and Dana Farber in Boston.

Both onconlogists suggested looking at clinical trials and adding bicalumate to the Hormone Therapy.  During this process, we identified a Phase  III clinacal trial evaluating TAK-700 in the castrate sensitive phase.   I was accepted to the trial and am currently on a Lupron/bicalumate treatment regimine.  I have respond well according to all the physicians.  A bone density scan was normal and to date I am not having any side effects from the HT.

I am a 55 year old male, husband and father of  17 and 14 year old girls.  As the treatments have not really effected my quality of live I have not told my daughters and my 82 year old father what is happening.  My brothers are aware of the diagnosos.   I have spoken with a couple of close friends and my wife has been very supportive but is extremely stressed.

Fortunately we are finacially stable and have begun to do some finacial planning based on a 5 year, 10 year  and greater life expecantcy.

The next hurdle is the wieght loss and excercise.  

My PSA levels to date are below.

Questions

1 - Should I be more agressive in my treatments (the Dana Farber Dr. thought radiation might be an option)

2 - Is there a national expert I should see besides what is available in New England?

3 - Is the story I am geeting from my Dr's reasonable.  Not much else to do except wait and see how long I remain castrate sensitive?

Any comments are appreciated.  Not looking for sympathy as this is part of life, just some advice and maybe some sharing of your story to help be get a handle on what we face.

 

Thanks

 

Mike

 

PSA Levels

12/3/2013 53
12/26/2013 7.45
12/31/2013 6.39
1/20/2014 2.36
Beau2
Posts: 239
Joined: Sep 2010

Dr. Snuffy Myers is one of the best. Try googling his name ... he has on line videos that may help You.

All the best as you move forward .... Sorry you have to be here.

tarhoosier
Posts: 182
Joined: Aug 2006

At Healingwell.com, prostate cancer section, there is a member named Sonny3 who has just started trial S1216 and looks like yours.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I was in Florida and stopped in and met Sonny and his wife. Had a great day and we did keep our prostate talk to a mid level. He has just started the trial and he would be more than glad to talk with you. You can connect with him through heallingwell.com via email.

 

Lewvino

VascodaGama's picture
VascodaGama
Posts: 1543
Joined: Nov 2010

Mike

Welcome to the board.

Your positiveness in confronting the situation is a step forward for your success. Thought, as you have already realized the hormonal treatment (HT) alone will not help in getting rid of the bandit. The Gleason 8 is for high risk and you got confirmed metastases which status may render radicals obsolete if looking for cure.

Radiating the prostate plus the surrounding areas or surgery to dissect the gland plus some of close lymph nodes, can provide some relieve in cancer progression but it would be done with intent at debulking, with high risk for becoming incontinent and colitis, etc. These could jeopardy your present quality of life which seems good with no symptoms, as you describe above. Traditional HT also causes side effects that to some become nasty, but for whatever reason it may be, in some guys these effects are well accepted apart from working well in the control of the cancer. It seems that you are such a lucky example.

Unfortunately there is no proper medication to treat prostate cancer (PCa) that has metastasized. Doctors also tend in these cases to keep radiation as a late “weapon” to treat pain that usually occurs when the cancer attacks the bone. This is typical in advanced cases when patients had consumed all possibilities in the fight against the bandit.

The only known cure in metastasized cases, as recurrent post a radical, is the so called oligometastatic cancer. This is a term given to a fewer number of metastases in bone or lymph nodes that can be spot radiated with success. This is not applied in large spread cases.
In those, chemotherapy is usually recommended. However, there is a newer drug just approved by the FDA that kills cancer in bone, prolonging the period before chemo or even “killing” the bandit for good.
It is named Xofigo (Alpharadin) and it is radium 223. It is safe with a short half-life of 11 days and manages to attack (radiate) the cancer cells in bone using its osteoblast path phenomenom, when forming deteriorated bone.  Cool

Alpharadin is called the wonder drug for its high performance. I think that you could try getting detailed information about this wonder in the net and discuss the matter with your doctor to access any possibility in get it together with TAK-700 of your clinical trial.  Innocent

TAK 700 (trade name Orteronel) is a CYP17 Inhibitor therefore it is part of the hormonal weaponry. It works from within the cancer cells blocking their possibility in producing androgens. It is similar to Zytiga and this is administered with Alpharadin by medical oncologists such as the famous Dr. Myers. You may be interested in knowing more details about this doctor too.

For your reference here are some links for Alpharadin;
http://www.medscape.com/viewarticle/804184

http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&sqi=2&ved=0CCoQFjAA&url=http%3A%2F%2Fen.wikipedia.org%2Fwiki%2FRadium-223&ei=Fen8Us3uJcrH7AbChYG4DQ&usg=AFQjCNHlp7HtsILboz-LsKwLvC52IDFMtQ

A video of Dr. Myers discussing Xofigo combinations;
http://askdrmyers.wordpress.com/2014/01/28/xofigo-combinations/

A video about bone cast and blast;
http://www.youtube.com/watch?v=78RBpWSOl08

An Archive for bone mets:
http://advancedprostatecancer.net/?cat=1028

All treatments in prostate cancer cause effects that are better mitigated if one is physical fit and friendly with certain diets. Periodical tests are a must, particularly the testosterone when one is on hormonal manipulations. I recommend you to get a copy about nutrition from this link;
http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

A good book about HT (already old but still good) is “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

Best wishes in your journey.

VGama  Wink

hopeful and opt...
Posts: 1304
Joined: Apr 2009

The medical oncologist(s) that you are seeing may be very capable ( I am unable to give an opinion).......FYI...there are about 30 medical oncologist in the United States who specialize only in prostate cancer...As I understand, .Dr. Myer's who is in VA. does not accept medical coverages, only cash.

 

Diet, many of us at this site have made changes to our life styles.....exercise, reduce or eliminate sugar intake, and are vegetarians...no meat or dairy...there is a book "the china study" by T. Colin Campbell written about 30 years ago which that provides research to validate this choice( mainly based on comprehensive epidemiological research studies......there is also a DVD called FORKSoverKNIVES that you can obtain from Netflick or your library which is a quicker review.

There is also a current book out by Joel Furman..."Eat to Live" that talks about a plant based, whole food diet; the benefits to include that ability to loss weight.

Since family members are more like to contract prostate cancer than others, it is important for your brother and other male relatives to have an annual PSA and Digital Rectal exam, and eat heart healthy. Additionally  there was a study done about five years ago  at  Albert Einstein Medical Center in NYC that showed correlation between prostate cancer and breast cancer among Askenoski Jews, so the women in our families also need to be tested.

You and your wife may consider attending local face to face support groups in your area. Two national organizations that you may google are "Man to Man" and "US TOO" for local chapters in your area.

I wonder, as far as your children, how much they know or do not know about your condition?

kmclark1
Posts: 12
Joined: Dec 2013

Thanks everyone for the comments.  Having the ability to reach out to others and get thoughtful and useful feedback is extremely helpful.

 

My nex appointment is March 3 and I will let you know how it goes.   I did realize that I need to be keeping track of all my testing and am in the process of getting all the data and keeping track of it on spread sheets.  Unfortuantely the information does not get passed between the physicains as you wouold like.

 

The infomration regarding the drugs is great and will keep track of it all.

 

In regards to the kids, I have not mentioned anything at all as my quality of life isgreat.  I have ahard time believing I am acctually sick as the only side effect so far is the obvious one.  THanks again.

kmclark1
Posts: 12
Joined: Dec 2013

So good news today.  PSA on 3/3/2014 is 0.78 ng/dL.  Testostorne is 20 ng/dL.  Due second Lubron injection on 3/27/14.   Doctors very happy and Amazon delivered Snuffy Myers book yesterday.

 

VascodaGama's picture
VascodaGama
Posts: 1543
Joined: Nov 2010

Mike

Good news indeed. Congratulations. The results are indicative that your cancerous cells are of the type that responds well to hormonal manipulations.  SmileKiss

The decrease of PSA is consistent with the efficacy of Lupron in the short period of 1.5 months (2.36 to 0.78 ng/ml). The testosterone level of 20 indicates castration. I would think that these markers will still go further low. Can you share details of your final treatment protocol?

Are you on mono blockade with only Lupron, or have you added bicalutamide (Casodex) to the mix?

What about bone health. Have you done a DEXA scan to check for its density?

From the book of Myers you will read about the hormonal treatment administered intermittently which modality may provide longer periods before one becomes refractory. This protocol is my experience in HT using only one blockade (ADT1) with Eligrad agonist (same as Lupron)and it has been great. We are different but in my case the doctor has put me on On/Off periods with the drugs. I started HT in November of 2010 and stop taking drugs in May 2012. Since then I have been away from any drug (and their side effects), just watchfully regulating this “free vacation” period with the traditional 3-month periodical PSA and Testosterone tests. At the end of On-drugs period the PSA was <0.02 and T=<0.01. In December 2013, the last results were PSA=0.85 and T=465.

My doctor wants me to return to the On-drugs period when the PSA reaches 2.5 ng/ml. I do not know when such will occur but so far the first cycle of hormonal therapy has lasted 3.5 years and I am hopeful for an additional ten years on this treatment.

Each case depends on patient’s initial status. Famous oncologists like Myers prefer protocols that totally block the androgens pathways. They call it ADT3 (androgen deprivation therapy or total hormonal blockade) that includes castration with a LHRH agonist (such as Lupron) plus an antiandrogen (such as Casodex) plus a 5-alpha reductase Inhibitor (such as Avodart). The Agonist will prevent the testis from producing Testosterone (androgen that feeds PCa), antiandrogens will “stuck” the cells’ androgen-receptors (the mouth of cancer), and 5-ARI will stop manufacturing of Dihydrotestosterone (a ten-fold powerful androgen refined from testosterone).

The main purposes of oncologists is to keep the markers very low (PSA=<0.05 and T=<20). They try to maintain patients at these remission levels for at least one year before starting the vacation period. They will add other supplements to the above protocol when drugs do not manage to hold the bandit properly.  Foot in Mouth

I am not recommending you the above but this is just to inform you about the existing possibilities along your journey. Just try to educate yourself as much as you can and keep the positiveness you got on the matter. You may in fact tell your children about the cancer once you are confident with your success.  Cool

Best wishes for continuing improvements in the treatment.

VGama  Wink

kmclark1
Posts: 12
Joined: Dec 2013

VGama

 

Thanks for the reply.  

A little more detail on my story.

When my urlogist performed my biopsy (Dr. Stephen Scionti - excellent doctor with fantastic bedside manner) he performed a targeted biopsy on 11/15/2013.  The results came back quickly and my gleason score was 4+4=8.

He had also performed a bone scan which indicated the prostate cancer has spread.

A week later (my 55th birthday to be exact) I recieved my first Hormonal Injection (Firmagen).

Within the the next week I had appointments set up with two oncologists:

Dr Paul Mathew at Tufts Medical Center.

Dr Mark Pomerantz at Dan Farber.

 

Both confirmed my diagonsis and we discussed treatment options and a very frank discussion of what to expect.  Both recommended at a minimum that I start on bicalutamide.

Within a couple of days Dr. Mathew identified a clinical trail.

Phase III Randomized Trial Comparing Androgen Deprivation Therapy + Tak-700 with Androgen Deprivation Therapy + Biccalumtamide w/ New Diaganosed Metastatic Hormone Sensitive Prostate Cancer.

I investigated the trial.  The closest location was in NH about a 1hr and 30 min ride and the Doctor (Doug Weckstein) at NH Oconolgy and Dan Farber.

I agreed to proceed and then the ride began.   I hade to get a bunch of additional testing done to start the process.  Most importantly a bone densitiy scan (which was normal).

All said and done I was selectedfor the trial and randomly was picked for the standard therapy.

I recieved my first injection of Lupron right of Christmas and have been going to NH once a month for blood work.  I am due my next injection in three weeks.

I elected to stay in the trial as I may be able to help someone else later down the line.

I will have DEXA scan, CT pelvic/Chest every six months.

After my March visit I go to a three month schedule for testing and Dr's visit.

I am very pleased with the care to date, although I get the feeling that all the physicians are hoping that the Hormonal treatments last along time.  Dr. Mathew did an excellent job presenting the infomration to my wife and I.

After the intial shock, I have rested emotionally from being identified as a target of the bandit.

I am know begining to dive deep into the exising knwoledge base and try to realign my life style to assist in keeping him a bay.

The big thing I have to do is change my diet, and excercise.  Small steps at a time but it working.

I am very pleased to see that you are doing well and will use your example to help me through the dark periods.

I have another appointment with Dr. Mathew in a month and will discuss your protocol with him.

Now can you tell me if there in anything that tastes as good as beer?Smile

Here is to keeping the bandit at bay and thanks for sharing.

Mike

 

kmclark1
Posts: 12
Joined: Dec 2013

Link 

 

http://swog.org/Visitors/ViewProtocolDetails.asp?ProtocolID=2251

 

kmclark1
Posts: 12
Joined: Dec 2013

Recieved my second Luporn injection on 3/26/14.   My PSA was 0.76 down 0.02 in the last three weeks.  Sounds ok, but not having the dramatic drops is a little disheartening.  Any thouhgts?

VascodaGama's picture
VascodaGama
Posts: 1543
Joined: Nov 2010

Mike

I do not understand your post or your doubt. Please correct me if my thinking is not proper:

You said previously that on 3/3/2014 the PSA was 0.78 and the testosterone was 20 ng/dL. These results originated from your first Lupron shot (mono-therapy ADT1, therefore no Bicalutamide) administered on Christmas 2013, approximately 2.5 months into action. Later at the end of the first Lupron shot, in 3/26/2014, you got the results of PSA at 0.76.

The above follows a Firmagon shot (antagonist) administered on November 2013 when the PSA was higher than 53 ng/ml.

My question is; are you on TAK 700 (Orteronel) as described in the trial mentioned by you?

If the above is negative (not taking) then the drop is still consistent with the protocol. By experience, mono (leuprolide) or double blockades (plus bicalutamide) takes about 6 to 8 months to have a drop in PSA from level 1 to remission of 0.05. These low levels are thought to be attained after medications have clean the “floating” extra serum of the initial period. That would justify the quick action of Firmagon in causing the drop from high 53 to 1.
However, if you are already under the administration of Orteronel then the remission level may be expected to be reached sooner. Your next tests in three months will alleviate your stress.  Smile

In any case, you should discuss with your doctors about your concern. Typically in cases where remission becomes difficult to reach, the oncologists add extra medications to the protocol to force submission. The common is to move to ADT3 with added 5-ARI. Famous oncologists are known to add daily pills of Celebrex or even add Leukine. This is done when the bandit shows some resistance to the treatment.

Let us know about your next intervention and the discussions with the oncologist. I hope you are managing well with the side effects from hypogonadism. Fatigue was my worse initial effect. Sometimes I found myself into arguments for trivial things that shouldn’t be there at all. Later I realised that the medication was the cause and that I was the problem.  Innocent

Diet and a change in life style helped me to counter the side effects without the need for side treatments.

Best wishes in your journey.

VGama  Wink

 

kmclark1
Posts: 12
Joined: Dec 2013

VGama

 

Thanks for the reply.  I guess I felt a little overwhelmed when the test result came in, as I had previously seen huge drops in my PSA.  When it only dropped 0.02 I was surprised as I realize that 0.78 and 0.76 are statisically the same number.

To clarify - I initially recieved firmagon when first diagonosed.  When I applied for the trial I was moved to Lupron with bicalutamide.  As this is not a blind trial, I was informed that I would not be recieving TAK 700.  While I have to travel to NH instead of recieving treatment locally in MA, I decided to stay in the trial. 

So following what you are saying is that the firmagon led to the intial steep decline and now the dual blockade should result in remission levels in another 3 to 6 months.

While the oncologist admistering the trial is awesome, I am also seeing another Dr. in Boston after the trial appointments.  I will see him next week and will let you know how it goes.

In regards to side effects, fatigue is the one that bugs me the most.  2 to 3 times a week I find myself in bed around 8 pm.  Fotunately I am getting a good nights sleep and are ready to start the day between 5-6. 

The big thing now is to drop the extra weight and become active again.  I have started an excersice program around strength training, and have set myself a goal of running a 5k in three months.  So hopefully by the time I get my next treatment I will have moved forward physically also.

Thank you for your concern, and I hope you are well.

Mike

 

kmclark1
Posts: 12
Joined: Dec 2013

Recently had a CT and Bone scan.  The results are encouraging. 

 

"Bone scan looks improved. CT bone windows suggests healing response."

 

Going to the Doctors in another mont for next Lupron and an appointment to review results.

VascodaGama's picture
VascodaGama
Posts: 1543
Joined: Nov 2010

Mike

I am glad to know about your scan results. Let's hope for improvements of the PSA.

Enjoy.

VG

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