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Daddy recently diagnosed APC

Kay23
Posts: 8
Joined: May 2013

Hi everyone, I have spent a few hours on these threads and have found some encouragment and hope here,  thank you all very much.

Never thought I would be saying this but sadly my daddy has been Dx with APC (advanced prostate cancer)  We have only just found it has spread outside the prostate, one can imagine,  we are all sscrambling for information and hope that we are approaching this the right way - if there is a right way   We are absolutely besides ourselves.  I myself have only just had the courage to read all about my daddy's cndition so at present have little information.  What I do know is that my daddy's Gleason count was 8,2 in Feb,  it is now down to 0.04  he is currently on HT treatment - sadly the monster has travelled to his bones.  I am really not very familiar with all the terms and am taking it upon myself to find as much info as I can and I am looking for hope.

I live in Europe my daddy in Africa - so its really really hard on us all.

My daddy is 73years old,  usually very fit and healthy

Gleason count was 8,2 down to 0.04 30 May 2013

He is on Lucrin and Casodex  

Bone scan Monday

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Kay

I am sorry for the news about your dad. Hopefully he gets a grip on the matter and manages to control any progress of the disease.

Your terminology is in fact erroneous. I think that you were referring to the PSA results that were down from 8.2 ng/ml in February to 0.04 in May. The decrease indicates that the hormonal treatment is doing well. The drop is significant and the cancer is responding to the drugs.

Can you share more info about the symptoms/results of any other test that have diagnosed your dad’s case as Advanced?

How did he found out about prostate cancer?

How many cores were taken in the biopsy? How many were with cancer?

What is the Gleason score?

Did the doctor give him a clinical stage?

What about image studies (CT, MRI, Bone scintigraphy, etc.)?

Can you share details of the HT protocol recommended by his doctor?

Here is a book that may be of interest to your dad as reference to HT treatments. You can get copies at Amazon site and deliver to your dad directly;

 “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers; which informs on diagnosis and treatments for advanced cases.

Here is a “compendium on Prostate cancer and care”;

http://prostate-cancer.org/decision-aide/where-to-start/prostate-basics/

We are not doctors but many survivors in this forum like to share their views and experiences which will be helpful for you to understand the facts and the status of your father. I recommend you to read and do research in the net about his treatment and the side effects.

Wishing your dad luck in his journey.

VGama

To Young to Die
Posts: 2
Joined: May 2013

I have hormone resistant prostate cancer, the docs are now suggesting Zytiga.....Ive heard there is another drug besides prednizone that it can be taken with that doesnt hurt the immune system the way prednisone does........Im brand new to this network and still finding my way around so any help you can offer would be appreciated.....

thanks so much

TYTD

Kay23
Posts: 8
Joined: May 2013

WELCOME to the forum - in my thoughts and prayers

Samsungtech1
Posts: 350
Joined: Jan 2011

TYTD,

Ralph has been taking Zytiga for about a year now.  Shoot him a message and ask him. Seems like it works.

Good luck,

Mile

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

TooYoungToDie

I have posted my response to you in the following link;

http://csn.cancer.org/node/253675#comment-1375670

I repeat that you should only substitute prednisone with a drug prescribed by your care giver.

Best wishes.

VG

Kay23
Posts: 8
Joined: May 2013

Hi VGama

 

Thank you for the information,  with regards to the information needed I will get this as soon as possible.  I got this information from my sister and have only asked about PSA and Gleason as they "seemed the most important" - thank you for the link - will be checking this out.  My sister has purchased my dad a book on APC and he has just has the courage to start reading it.

 

Will send info

Thanks again

Kay23
Posts: 8
Joined: May 2013

Hello,  here is the information requested,  I hope it suffices,  if there is anything else you need please let me know

As you can imagine,  we are in an absolte state and in a way am scared to know what all these figures mean, however I realise being educated on this is paramount,  I really appreciate your advice.

Thank you

 

 4/3/2011 psa 4.65
22/3/2012 psa 5.83

26/11/2012 psa 8.71
Went to see dr bell had a digital retal exam plus sonor bladder and kidney s ok.
Biopsy done on 30/11/2012.
1. 3 cores of prostate tissue 15mm in length
2. 6 cores of prostate tissue 18mm in length
3. 3 cores of prostate tissue 12mm in length
4. 4 cores of prostate tisdue 20mm in length.
Results . Gleason grade 4 major 4 minor and histological score of 8. Perineursl infitrstion noted.
Aggressive cancer. All had tumors.

Bone scan and ct scan done on 6th December.
Localized to prostate but ther are spec on the hip spine and shoulder. Metastases of the bones.
6th December hormone therapy started. Lucrin and casodex for 3 months.
6/2/2013 psa 0.19
1/3/2013 psa 0.10
9/5/2013 psa 0.07.
Blood test were done in january for
Iron anaemia
Vit d none

Sugar ok.
Dadz is on iron. Multi vit. Vit d and flomax snf valdoxane for depression.
Another bone scan is booked for tomorrow.
Dadz is interested in bracitherapy or IRMT. Both have bad side effects.

END

VascodaGama's picture
VascodaGama
Posts: 1533
Joined: Nov 2010

Kay

From the info you shared here I see the “baddy” in the metastases at spine and shoulder. Probably his clinical stage is T3NxM1b. The Gleason pattern 4 is also not good but the cancer is responding well to the hormonal treatment.
In any case; these diagnoses should be confirmed in the next bone scan. The worry is if we can consider false negative results from those scans. If the procedure is done at antiquated facilities/equipments.
I also would recommend him to get a MRI done in a Tesla 3 machine. (Get him into Europe if he cannot find a T3-MRI in Africa)

Does your dad trust the doctors and the hospital where he is consulting?
What about second opinions on the recommendations?

So far the procedures he has followed by his doctor are correct in my view. The only problem would be if his doctor got the proper tools to deliver the best treatment.

 

Unfortunately all treatments for prostate cancer have risks and cause side effects. It is the duty of the patient (and the family) to decide on a preference that is acceptable. Older patients sometimes are recommended palliative therapies so that they avoid the risks of radicals (surgery and radiation) with regards to the Quality of Life. 75 years old is usually the limit for radicals as recommended by NCCN guidelines. Your dad is a younger 73 full of energy and healthy. As you commented he feels OK and is ready for the challenge.

Brackytherapy is a treatment for localized diagnosis. This will care for the prostate gland alone. IMRT is wider and it includes the gland and close peripherals. Metastases at the spine and shoulder should also be included which turns the localized therapy inconclusive.
M1b cases (confirmed far metastases) are usually not treated with radicals. Doctors prefer to use focal radiation to the spots they find reserving other areas in bone for later attack to treat pain (typical of cancer symptom in bone). The reason is that radiation should not be directional to the same areas twice because it may cause fistulas.
Radiation is only applied to pre-defined targets with intent at cure. Full dosage and proper isodoseplanning is required. In a case like your father (M1b) Bracky would be considered debulking only (eliminate the biggest portion of cancer in the gland but not the whole).

Surely this way of treating is also feasible. It extends life but at a cost of quality living. In such cases the radiologist should take into consideration QoL when deciding on the field to radiate. “Zipping” the most out without much destruction and no cure in the scope.

This is why proper image studies are important in the decision process. I recommend your dad to try getting the best scan he can afford.

 

Advanced prostate cancer patients are usually recommended to hormonal and chemo therapies. These do not provide cure but it can pin down the cancer for long periods of time (years). One starts with a first-line HT (your dad’s case) with leuprolide acetate (Lucrin, Lupron, Eligard, etc) RHLH agonists plus antiandrogens (Casodex, Cyproterone, etc) and then moves to a second line HT when the drugs become ineffective. Before chemo there are still immunological treatments which overall extends the life of a patient considerably. Many reach the 15 year mark.

I think that your dad is taking Flomax and Valdoxane to counter the effects from hypogonadism. HT is not free of symptoms either, but they may be more amiable than problems of incontinence, bowel colitis or fistulas.

Your dad will need a series of other tests to control the progress of his case. Testosterone is very important in HT and so it is a dexa scan to look for osteopenia/osteoporosis (induced by HT and cancer). He may need taking a bisphosphonate. ECG for heart health should also make part of the routine as well as any other image study. The lipids need to be checked to look for diabetes and to verify for interaction of the medications. Care with Anemia.

Being active and changes in diet and in the way we do things may become required to counter the effects too. Here is a booklet for your reference;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

I like to see you so involved in his care. You are wonderful and he his very fortunate for having such daugthers.

Best wishes in his journey.

VGama  Wink

 

Kay23
Posts: 8
Joined: May 2013

Hello,

Thanks again for your response,  I am going to forward this information onto my sister and dad.

Dad will be having his bone scan tomorrow - we are all holding thumbs.

If you dont mind I would like to send the results to you - your recommendation and advice is most welcome.  I scanned down your article quickly to find the words "years" I found it and that will give us encouragement especially knowing that my dad id a REAL fighter and will fight the monster.  My older sister is "mother hen" so she will ensure that every step is followed in terms of vitamins - diet etc etc,  - we have a strong support group and I personnally have found some support and encouragment on this site as I am on the other side of the world.

Thank you for your kind words.  We are three girls one boy - all love our dad to pieces so we will certainly be following any advice.

I will forward more information to you once I have it.

I cant say thank you enough

Kay

 

Kay23
Posts: 8
Joined: May 2013

Hello again,

 

Forgot to mention - 2nd opinion same result

He is a patient at Flora Clinic in SA a Dr George Bell

UPDATË:

My dad went for his bone scan today,  the "baddy's" havent moved in hip - spine and shoulder, small urological op in July - New PSA tests in September

Cool future's looking a little brighter

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