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Cam

43 with stage 4 prostate cancer

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Cam    2
Cam

Hi all, thought I'd share a brief summary of my story with no particular aim other than to find other people to talk to.  I noticed a slow stream in October/November last year and didn't think much of it but went to my GP late November.  Had an ultrasound and PSA test and I can still recall the GP calling me on December 8 as I was going through customs on a business trip, "your PSA is 8 which isn't good but there's no chance of it being cancer at your age"...... Saw the urologist on December 22 and he said something similar and "go and enjoy your Christmas break".  

 

MRI done mid Jan and urologist showed me a black mark on the prostate as I was lying on the table waiting for the biopsy, 'it'll be benign".  Jan 19 and my wife and I are anxiously waiting for the results and the urologist looked like a ghost and said, "I'm so sorry, it's severe cancer with a Gleason score of 9".  We had a horrible week thinking of imminent death waiting for PET scan results which ultimately came back with a local spread in one lymph node.  6 days later I had a 6 hour robot assisted radical prostatectomy and the urologist went hard removing 21 glands and the prostate on Feb 1.

 

PSA dropped to 1.4 then rose to 1.8.  PET scan late May showed lymph spread outside the local area and a "mark" on a rib so started hormone therapy and after 4 weeks PSA was 1.0.  Oncologists advice is now to wait for genetic testing and another PSA test early July.

 

I have three boys aged 9, 5 & 3, so life and the uncertainty of what's to come is almost unbearable at times.

 

That's my story. 

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Aussieflicker    1
Aussieflicker

Stay positive, my PSA is doubling every 3 months after RP in Jan 2016. Now up to 1. I have a small microtumor on spine - not visible on conventional CT. Having another CT in July, if still not vis, then ADT in Aug, if vis then chemo and adt.

 

Life goes on - keep smiling!

 

Jeremy

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alanbarlee    9
alanbarlee

G'day Cam,

To help you to map out a longer-term treatment strategy (and to give you some concrete reasons to remain positive and optimistic),  suggest that you begin discussing emerging new treatments with your oncologist.

These include Abiraterone (Zytiga), enzalutamide (Xtandi) and radium-223 (Xofigo) . None of these are yet on the PBS for pre-chemo use, but very recent research data is showing great promise for them, especially when used in combination and early in the evolutionary process of cell mutation.

Abiraterone is currently available on the PBS when chemo fails (or if your medonc judges that you would have trouble coping with chemo side effects). Enzalutamide is currently the same - except that a forthcoming Government Committee meeting may agree to extending its use to pre-chemo (which may lead to a similar request to follow for abiraterone).

Xofigo is a radiopharmaceutical, specific for bone metastases. This one has a couple more hoops to jump through with the Government - but there are moves afoot to make this important product available to qualifying patients.

Another important new treatment - 177lutetium-PSMA - has given remarkable results in Phase 2 trials, and a larger Phase 3 trial will be recruiting some time this year. This is definitely another one to look out for.

Beyond those, there is some excellent work emerging on immunotherapy, which has been so successful for melanoma, non-small cell lung cancer and bladder cancer. There are still a few things to learn in respect of prostate cancer, but there's a lot going on.

Best wishes - and stay focused on keeping fit, informed and happy!

Alan      

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Bruce Kynaston    1
Bruce Kynaston

Cam,

As a radiation oncologist, I used to tell my patients who were found to have incurable cancer not to hit the panic button until I told them as we had to see what could be done about the situation in the meantime.

Sadly, in your case, with a young family, it is serious because of that. 

The going may be rough at times with treatments, but at least you have the consultants that you need.

We of the Advanced PCa Group have some understanding of your situation, so join us when you can in the monthly telephone hook up.

We llisten and help folk like you, as fellow human beings.

Best wishes,

Bruce.

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Cam    2
Cam

I appreciate the replies and are certainly keen to keep up-to-date with latest developments.  I'm staying positive, keeping fit, and generally trying to get on with a normal life (albeit a very different "normal" life than 5 months ago!).  Not coping as well emotionally as I am physically, with a liberal dose of denial and disbelief, but that's probably a good thing as remaining alive to see the boys grow up is all I'm trying to focus on.

Thanks again.

Cam

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alanbarlee    9
alanbarlee

Hi again, Cam,

One more item to chat over with your medonc is combining chemo (docetaxel / Taxotere) with your ADT, rather than waiting for symptoms before starting chemo. There's really good data on this one, and it is becoming standard of care for early stage metastatic PCa.

Good luck again!

Alan

 

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Brian Lawrenson    1
Brian Lawrenson

Cam, Many of us are on this journey. I was where you are 15 years ago. I'm 76 now. I've had brachytheraphy and I've been on the ADT injection Zoladex from about 2008. I used to do 6 month on, six months off till it stopped working. This is a normal response.  After that in 2015 I've been on Enzalutamide which has kept the cancer under control. I've just started Lutetium 177 injection and had my first treatment four weeks ago. I'll have a second treatment in two weeks. The latter is expensive ($9,600) each because it is not on the PBS. Its available in Sydney (Macquarie Hospital),Melbourne and Perth. 

The Gleeson score is important. I was 9 too. That means it needs more aggressive treatment. I'd recommend you read some good books. One that has up to date info is An ABC of Prostate Cancer Today available on order from bookstore or Amazon.

My cancer has never effected my lifestyle but in early days it did take a while to counter the depression. Try meditation to counter and change your diet to slow down any cancer growth. No meat, dairy, sugars and cut back on carbs. More fresh veg and fruits.Limit alcohol. Good luck.

Brian.

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Paul Edwards    31
Paul Edwards

Brian you're not by any chance the brother of Alan Lawrenson, the self-proclaimed "best- selling author" of "The ABC of Prostate Cancer "?

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Chalkie    0
Chalkie

In Dec 2004 my PSA had risen to 5.6 from 3.8 two years prior and I was referred to a urologist and biopsy with Gleason 7 can't recall the combination but the outcome was the I would need surgery or some other treatment to get rid of the local prostate cancer.

In March I had a radical and all seemed well although the report was that the Pca was close to the margins!  In June 2005 on return to the Urologist PSA was 4.O  The urologist exclaimed "Surgery Failed!!"  "reading must be a mistake". New PSA test ordered and PSA was 5.O.   Subsequent PET scan (2nd to be done at Peter Mac CC) revealed tumours well away from bed of my prostate!  In a clinic with the experts I was told not to plan anything beyond 2 to 5 years!!  I had just turned 59 and ready to make the most of retirement.  The tumours were well apart and probably in lymph nodes.  Radiation?  not viable as area to be radiated would also involve other vital organs.  Surgery? No - would be just like weeding the garden.  Likely to be many microscopic tumours in between the visible tumours.  Chemo? no, that is just palliative.  Just wait an see and keep fit. 

After 2 months of anxiety and sadness I was able to get back to work and in September surprise surprise PSA was 3.7!!  Cancer not aggressive but indolent.  I hope your situation is similar.  

 

Now chemo may be a first line of treatment.  But in 12 years ago the Docetaxel (Taxotere) was new and outcomes were unknown - now in many cases it is offered as a first line of treatment.

My journey has been OK  - after 4 years PSA was up to 20 something and hormone deprivation was introduced *(Zolodex) and after 18 months PSA was down to close to 1 and then I was given a break and PSA gradually rose again and was up to 40+ before Zolodex was reintroduced.  The Zolodex is still helping but I am now regarded as being castrate resistant - as my PSA went up and further hormone blocking drugs have been introduced.  Earlier this year with a rising PSA, chemo has been introduced and after 6 infusions PSA is stabilising below 20 although not sure if it will rise or drop with more infusions.

Bone scans reveal many tumours - and a PSMA in 2015 indicated that there were too many tumours to treat with the more recently available stereo-tactic radiation.  Interestingly the tumours that were present in lymph nodes don't seem to be there now - there is not much to feed on in the nodes.  I would think that in your situation - should the tumours spread to bones that the "calipso" machine that provides stetreotactic radiation would be a treatment option.  

 

I have symptoms from the PCa but the treatments have taken away libido and some loss of zip.  But I am living a what i regaard a normal life - although the chemo is causing some fatigue but not enough to stop me playing (walking the 18)golf 3 times a week.

 

With the many treatment options that  are now offered your prospect would seem very good.  There was an encouraging report in the UK Daily Telegraph:  (https://digitaledition.telegraph.co.uk/editions/edition_DuXYg_2017-06-04/data/333143/index.html?share=1&WT.mc_id=tmgapp_inar_share&utm_source=tmgapp&utm_medium=inar&utm_content=share&utm_campaign=tmgapp_inar_share&Expires=1498950000&Signature=Qbq5MxKsfJ~cVy4IhgVwFoveEmXqO39H9PU1x6InM0mIIMCqfgtkvuphcHoiFDKUxc-G1oODaReZANsTl2xAYaXEOTa2PCh2L0ydDuCwEEQGbELjqjEyg-x1VabWrN2FMYnLbjMwrLSTdawqUi82a80ymgrhYtE-sHvCi2e2qxLhYpH4QNE1kl00ZRsdxsXqXYSe8S-13YNvtk-VLVcFw8N9cBjdO66g1wCYTUDrF~lou-WsGizUHztB5IoQJMj7TFmCU5yk-f7xLIgqFTU2hSPihndtLGpFkND1Hx05hgLBfjkwuc~jZwUrfKcxdWfbgcQ0mZwg5iG9qWpT68KNOQ__&Key-Pair-Id=APKAJLCEPDGCTPVKXNOA

 

Good Luck and keep fit - best thing about cancer is that I joined a gym and my cardio vascular fitness is better than it ever was and perhaps this is why i am lasting so well and managing the chemo a lot better than most.

 

Try to get referred to a hospital such as the Peter MacCallum Cancer Centre in Vic as treatments such as scans etc are free. Push your urologist to get you in

 

  

 

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Canook    0
Canook

Hi Cam,

I am also new to this forum and keen to learn from others.  

I had my prostate removed robotically 10 months ago and discovered that it was worse than the original biopsy indicated (T3b vs T2a) giving rise to a lot of anxiety.  Keep focusing on that family of yours...if they can't motivate you to fight your illness then nothing will.  Try to combat uncertainty with information and avoid isolating yourself...you are not alone!

I am curious to know what sort of genetic testing your oncologist has advised, where you went to for the test and when you will review the results?  I am considering a similar approach although my urologist has yet to provide a referral.

A lot is happening in the fields of radio-pharmacology and immunotherapy guided by new genetic screening so remain hopeful of "cures" rather than "treatments" in the foreseeable future.  The researchers need our support so makes sense to lobby, fundraise, protest, participate in studies, whatever until they find these for us.  In the meantime follow a strict diet, exercise regularly and try some form of cognitive behavioural/mindfulness training to settle your mind and deal better with the constant emotional conflict we all experience.  

When you have a family depending on you it can be hard to let go and focus on your own recovery but this is in everyone's best interests.  I've found local support through a number of Cancer Council programs and University study groups out here in Perth (I find that at age 52, I am the baby of the group but I bask in the wisdom and life experience of other cancer sufferers).

Best Rgds, Canook

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Brian Lawrenson    1
Brian Lawrenson

Cam and others hi, Paul asked whether the book I mentioned is written by my brother. It is but it is one of the most up-to-date books about cancer treatments available. Alan also speaks at a number of support groups. Canook mentioned that he is from Perth and it might be helpful for him to know that they do Lutetium 177 at the Theranostics Clinic of Dr Lenzo. I was looking at going to the Peter MacCallum Cancer Centre in Vic before Dr Lenzo opened the Sydney Clinic about 6 weeks ago. The PMC Centre has a good reputation. Good luck with your information collection.

Brian

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Cam    2
Cam

Hi all, I really value the replies I've seen so far with the sharing of your own experiences and the wealth of information. I'm stuck in Epworth hospital today looking into some lingering post op plumbing issues but will certainly be digesting each of your replies over the coming days.

Cam

 

 

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Charles (Chuck) Maack    8
Charles (Chuck) Maack

Important is if you are continuing the androgen deprivation therapy (ADT), and what are the medications being prescribed?  LHRH agonist either Lupron, Zoladex, Trelstar, Eligard (or alternative name)? Or GnRH antagonist Firmagon/degarelix?  An antiandrogen with bicalutamide, generic of Casodex, most often prescribed?  At least one of the agonists or the antagonist should be an ongoing treatment.  The antiandrogen should also be combined in this treatment.  From personal research, study, then long use of the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart, I always mention encouraging the Urologist or Medical Oncologist to include this medication in the ADT mix; each serve a different purpose. Men newly diagnosed with advanced, metastatic prostate cancer have been recommended to continue their ADT medications and add a series of docetaxel/Taxotere chemotherapy at the same time.  New "Latitude" and "Stampede" trials in the U.S. have just recently shown data that the medication abiraterone acetate/Zytiga should be in the mix early on and in the U.S. can be prescribed pre-chemo if metastasis known present, but this is a very expensive medication and one would hope that it is or will be on your PBS soon.  None of these therapies are likely to be curative, but statistics have shown they can extend one's life many months to many years.  I have been on ADT for 21 years with the foregoing ADT medications (no chemotherapy yet), recently finished 5 years 8 months of Zytiga/abiraterone effectiveness, and only a few weeks ago replaced Zytiga with Xtandi/enzalutamide with immediate response of PSA drop from 0.949ng/ml to 0.826ng/ml (significant at least to me).  Please feel free to visit my website www.theprostateadvocate.com and particularly the menu word "Observations" where I have either authored, compiled, or posted from medical friends over 200 papers regarding the issues we can experience once diagnosed with our insidious disease, Prostate Cancer.

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pauldhodson    0
pauldhodson

Thanks for your comments Chuck. I am having a lot of trouble convincing my medical oncologist here in Perth to add an anti androgen like casodex and. 5alpha reductase inhibitor like finasteride to my zoladex. She tells me that it's bs and that all the oncologist at the hospital agree. Can you point me to any research papers I can show them. I just think they're being lazy but it's my life at stake not theirs. Cheers Paul.

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pauldhodson    0
pauldhodson

Hi Cam, I'm much like yourself but my journey started last April at age 49. I was also told that I probably had BPH or an infection, but then after antibiotics did nothing I had a biopsy showing Gleason 10 as my highest and 11 of 12 cores 100% cancer. I was also told it was unlikely to  have spread, but then I got a bone scan showing a dozen skeletal mets. Suffice to say I was shocked and overwhelmed. I can say that the shock has worn off and I am fully focussed on doing what I can to stay alive for my two daughters ages 9 and 10. This morning I'm having chemo round 5 of 6 so I'm near the end of that thankfully. Did I read correctly that you are also from Perth? If so, let's hook up.

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alanbarlee    9
alanbarlee

Hi Paul,

Regarding 5-alpha reductase inhibitors (5-ARIs), I've been using the dual action dutasteride (which prevents reduction of testosterone T to the much more active DHT) rather than finasteride - a single-acting 5-ARI. This has been continuous over the past 12 years of ADT -  along with Zoladex (GNRH inhibitor that prevents tesicular testosterone synthesis), Cosudex (an anti-androgen PCa cell membrane blocker). My medonc was totally supportive of my proposal of intermittent ADT3 (started at a post RP and a post-watchful waiting PSA of 30). As Chuck mentioned, there is plenty of medical literature supporting this use, and the PCa specialists in the US routinely recommend it.

 

I replaced Cosudex with Zytiga more than 4 years ago, and after a short flare, my PSA dropped steadily from around 7 to its present level of 0.1, where it has been sitting quietly for the past 18 months.

 

(My primary treatment was open RP, with GS between 3+4 and 4+3 (i.e.50/50 of each cell type) with 25% LHS involvement and apparently negative margins and lymph nodes. Rising PSA and an eventual PET/CT scan located several LHS pelvic and lower abdominal active nodes, which have largely shut down under the (prechemo) regime above).   

 

Since dutasteride is only available on the PBS for benign prostate hyperplasia (enlargement), for most of the above period I sourced my 5ARI from either Cipla or Dr Reddys (both reputable Indian pharmaceutical manufacturers) via a trusted internet pharmacy. More recently I've been getting GSK's Avodart more conveniently and at lower cost (around $23/month) from my local pharmacy, with prescriptions from my GP.

 

I was elated to read some recent research that showed dutasteride to have a synergistic benefit with Zytiga: it causes A more favorable mix of Zytiga metabolites as it is absorbed into the body.

 

If you medonc is unaware of all this, I suggest you find one who keeps up-to-date, and who respects your input as an informed patient.

 

Good luck!

 

Alan

 

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Charles (Chuck) Maack    8
Charles (Chuck) Maack
19 hours ago, pauldhodson said:

Thanks for your comments Chuck. I am having a lot of trouble convincing my medical oncologist here in Perth to add an anti androgen like casodex and. 5alpha reductase inhibitor like finasteride to my zoladex. She tells me that it's bs and that all the oncologist at the hospital agree. Can you point me to any research papers I can show them. I just think they're being lazy but it's my life at stake not theirs. Cheers Paul.

 

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Charles (Chuck) Maack    8
Charles (Chuck) Maack

Certainly not "bs" - The Importance of 5Alpha Reductase Inhibitors: http://tinyurl.com/74bkzam

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Bruce Kynaston    1
Bruce Kynaston

Cam,

it has to be admitted that I have not read every word of posts, but has the matter of family history of PCa or Breast Ca been raised?

I ask, as it could be the reason why you have been diagnosed at your youngish age.

The BRACA 2 gene is the one that cam come down the male or female line, but cancer would have been more frequent in a family tree.

If so, ascertaining if you have such a gene becomes important as your children could have inherited same from you. Testing of them could be delayed until adulthood.

Bruce.

 

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pauldhodson    0
pauldhodson
On 6/7/2017 at 0:11 PM, alanbarlee said:

Hi Paul,

Regarding 5-alpha reductase inhibitors (5-ARIs), I've been using the dual action dutasteride (which prevents reduction of testosterone T to the much more active DHT) rather than finasteride - a single-acting 5-ARI. This has been continuous over the past 12 years of ADT -  along with Zoladex (GNRH inhibitor that prevents tesicular testosterone synthesis), Cosudex (an anti-androgen PCa cell membrane blocker). My medonc was totally supportive of my proposal of intermittent ADT3 (started at a post RP and a post-watchful waiting PSA of 30). As Chuck mentioned, there is plenty of medical literature supporting this use, and the PCa specialists in the US routinely recommend it.

 

I replaced Cosudex with Zytiga more than 4 years ago, and after a short flare, my PSA dropped steadily from around 7 to its present level of 0.1, where it has been sitting quietly for the past 18 months.

 

(My primary treatment was open RP, with GS between 3+4 and 4+3 (i.e.50/50 of each cell type) with 25% LHS involvement and apparently negative margins and lymph nodes. Rising PSA and an eventual PET/CT scan located several LHS pelvic and lower abdominal active nodes, which have largely shut down under the (prechemo) regime above).   

 

Since dutasteride is only available on the PBS for benign prostate hyperplasia (enlargement), for most of the above period I sourced my 5ARI from either Cipla or Dr Reddys (both reputable Indian pharmaceutical manufacturers) via a trusted internet pharmacy. More recently I've been getting GSK's Avodart more conveniently and at lower cost (around $23/month) from my local pharmacy, with prescriptions from my GP.

 

I was elated to read some recent research that showed dutasteride to have a synergistic benefit with Zytiga: it causes A more favorable mix of Zytiga metabolites as it is absorbed into the body.

 

If you medonc is unaware of all this, I suggest you find one who keeps up-to-date, and who respects your input as an informed patient.

 

Good luck!

 

Alan

 

 

 

Thanks for that Alan, I will look into the areas you have mentioned. I appreciate it.

 

 

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Maffy    0
Maffy

Hi Cam,

Thankful to read your post and to know others younger than me are also struggling with PC. I'm 47 and has a young family with 3 boys - 17yo, 12yo and 8yo and was diagnosed August 2016, thought to be a BPH and had TURP in October where they found cancer in my prostate and so had an open RP in November last year 2016. My PSA didn't really go up (highest was 2.6) which was why it was slow for my GP to give me a referral even though been having it for about 3 years. Now I'm told my Gleason was 9 pre-op. PSA after the the operation was .02 in Feb and now in May it rises to .1 and so I'm referred to an oncologist here in Sydney. I'm waiting to do another PSA scan but the Oncologist told me he is thinking it would be best to combine CT with ADT in my case given that my PSA didn't really rise pre-op but now it is rising once again. I'm now worried about what will happen, while still awaiting to do the PET scan. My way of coping is praying and trusting that all is under God's control and things will be good in due course. I'm also very thankful for the hopeful messages given to you in this forum, very very encouraging to see that life can be prolonged in our situation. I feel your pain of having a young family and facing the unknown in the current situation.

Till next time,

Maffy

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Brian Lawrenson    1
Brian Lawrenson

Hi, Maffy I sympathize with your situation. I was on ADT (Zoladex) for about 6 years before it became ineffective. Since then I have been on Xtandi (enzalutamide) for the past year. This has kept the returning PC under control. I was also Gleeson 9. I recently did a new treatment at Macquarie Imaging. Try Theranostics.com.au for info. The treatment is called Lutetium-177. They have just started in Sydney. My second treatment is on 30th June. it cost $9,600 but it might come on the PBS in the future. Watching your diet is really important. Absolutely no sugar, no red meat, no diary limit bread and carbohydrates. Lots of exercise and fresh fruits and vegetables.  Read some good books about PC.I also try to have fresh lemon juice daily as well as Pomegranate juice. Keeping the body alkaline helps. Knowledge is your best friend.

Cheers Brian

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Chalkie    0
Chalkie

Hi Cam 

Like others my PSA was 4 after a radial 12 years ago.  Now 12 years later I am castrate resistant and I am almost through the 7th infusion.  It has been a bumpy ride.  PSA has been as high as 44.  When they told me not to make any plans beyond 5 years in 2005. at age 58 depression/anxiety set in - meditation (mildfulness)and visits to the psychologist helped and my head was back to normal after 2 months.  If you want ask and I can arrange an upload of a guided session for you.   Last year when the homone blocking treatment had started  to fail anxiety set in and my GP put me on some mild serotonin uptake inhibitors and this put my head back to normal.  I am feeling OK and throughout the  12 years I have lived a normal life style and I put this down to the exercise regime I follow.  3 sessions in the gym per week - resistant training (weights etc) and cadio on a stationary bike (25 mins 260 cals) have helped a lot.  Exercise is Medicine.

 

They tell me when the chemo stops working or if it is getting down I will be intoduced to the next line of treatment that will be funded by the PBS as I have qualified because of chemo has run its race - but I now understand the chemo may be available to you.

 

The Zolodex if a very strong medication and can be effective for a number of years while the cells that don't respond to it start to take over chemo helps and aberaterone et. al. can treat some of the mutations and stop other organs producing testosterone and block receptors in the tumour that search for Testosterone.

 

I have found the chemo to be tolerable and fatigue minimal - taste buds and numb finger and feet - which will like the loss of hair eventually return when chemo is finished.  

 

My oncologist says after chemo many many years.  Lets hope he is right 

 

My GP fried says Prostate Cancer behaves how it behaves.

 

I used to believe that the next PSA result will be th most important but when I get the results I still say to my self the next one will be the important on.   But it never is but we have celebrated a few times

 

We are in a golden age of medical discoveries and Prostate Cancer is now regarded as a chronic disease.  Exercise, diet (Mediterranean) and medicine are all making the difference.

 

I wish you and your family well 

Chalkie  

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Cam    2
Cam

Hi Maffy & Chalkie (and everyone else who posted),

 

Thank you for taking the time to share your story.  The isolation I felt for the first few months has been tempered by reaching out to people who are also going through this.  As an update to my story, genetic test results were clear which is great news for my three boys.  Doesn't help explain how I managed to land this disease so early though.  

 

Cam

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Canook    0
Canook

Hi Cam,

 

Genetic testing can be very costly Cam.  

Which test did you have (US??) and how much did it cost if I may ask?

Latest published work from the Garvan Institute isolated over 4,000 defective genes in one PCa patient so not so sure a current standard 26 genome test panel really explains away the complex nature of the >200 known genetic varieties of cancer. 

Keep vigilant but not to excess!

 

Best Rgds,

 

Can-Do

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