Intermittent chemotherapy and hormone therapy before cancer becomes hormone resistant

User

Posted 12 Sep 2015 at 12:04

Hello. My name is Lonny. I am American and French and have retired in France. I joined this site to respond to a post by Nevyn in July regarding early chemo use. From the post it seems that in England, one is not paid for the early use of chemo in metastasized prostate cancer. I had the same problem in France. I was diagnosed with prostate cancer in 2009. Had a prostectamy and radiation therapy. The cancer came back and went in the lymph nodes. My urologist in France wanted to wait until the PSA levels rose more until he started me on Hormone therapy. I did not like this approach and contacted Dr. Kwon at the Mayo Clinic in Rochester Minn. I took a Choline 11 PET scan which showed exactly where the cancer was (this was in the Fall of 2013). Dr Kwon then started me on a treatment of chemo (Taxotere) for three sessions every three weeks followed by one month of hormone therapy. I then had another three sessions of chemo followed by one month of hormone therapy. At the end of this (April 2014) my PSA was undetectable and the PET scan could not find any cancer. I then took one year of Xtanda and hormone therapy. In June 2015,my last PSA, my cancer was still undetectable. I am now just taking hormone therapy with the idea of stopping this next Spring if all goes well. I hope this post helps so eone, and particularly Nevyn. Lonny

User

Posted 12 Sep 2015 at 14:38

Hi lonny

Very interesting post. Could you share more detail about your own dx ie PSA and staging prior to your RP. What your post RP results were. At what point did you have RT. What were your post RT results.

Thanks

Bri

User

Posted 12 Sep 2015 at 17:44

Hi Bri. I had my radical prostatectemy in April 2009. My PSA was 7.67 in Dec 2008. My last PSA before that was 2.45 in May 2007. At the time of the operation, my Gleason score was 3 plus 4, and I had pT3b disease. Just after the operation on July 1 my PSA was .05. In the late summer of 2009 I underwent radio therapy. In March of 2010 the PSA was .08. It stayed somewhat stable for about one and one half years and then started doubling. When I started my treatment at the Mayo Clinic it was everywhere in my chest, stomach, lymph nodes. My PSA was 2.3. I hope this helps you. Lonny

User

Posted 12 Sep 2015 at 22:33

Hi Lonny,

Thank you for joining us and detailing your diagnosis and treatment.

I find it interesting that you were treated under the auspices of Dr K of the Mayo Clinic. One of our forum members posted this link to the video of a lecture by Dr K and I like the reasoning of Dr K. I presently have a 'glowing' iliac node, (the prostate having been treated by RT and HIFU). The treatment now suggested is HT, the side effects of which I have experienced back in 2008 when I had my RT and which I now hope to avoid if possible. However, I like the more aggressive approach of Dr K and presently have an appointment shortly with another hospital to discuss how the node can be treated but with little or no HT. https://www.youtube.com/watch?v=NkqizmvqJPo

I am editing the name of the Doctor as it is a forum rule that we should not name consultants directly but the Doctor is named in the video as giving the lecture which makes the rule nonsensical!

Edited by member 13 Sep 2015 at 10:13 | Reason: Not specified

Barry

User

Posted 12 Sep 2015 at 23:15

Thanks Barry for sharing this video with me. Dr. Kwon is an amazing person. Lonny

User

Posted 17 Nov 2015 at 09:17

For those of you who have metastasized prostate cancer, I thought you might be interested in knowing that the intermittent chemotherapy and hormone therapy given to me. by Dr. K at the Mayo Clinic in Rochester Minn has recently become the protocol in France where I live. I have now had no detectable cancer for 19 months. Keep those advances coming. Lonny

User

Posted 17 Nov 2015 at 17:53

Well done Lonny and apologies for not replying to your previous reply to my query. I lost sight of this thread

All the best

Bri

User

Posted 17 Nov 2015 at 18:52

Hi lonny

This sounds a very interesting treatment regime, and its lovely to see how effective it's been for you. Maybe all our men folk with metastases should move to France!! ;-)).

Let's hope it maybe a treatment option that could be used in england.

Lesley

User

Posted 18 Nov 2015 at 05:20

Hi Lonny, apologies for not spotting this earlier.

I'm still fairly new and not as well versed as others here, but that sounds very interesting to me too. I shall see what my oncologist has to say on my next visit! Having said that, I don't expect my treatment to change any time soon, certainly not under the NHS, it takes a while for the supertanker to change course here in the UK and not while I'm still hormone responsive.

As I understand it, the decision on funding 'early chemo' is currently under review by NICE following the US CHAARTED publication and preliminary STAMPEDE results here in the UK.

I had seen reports that Birmingham was funding chemo and had it confirmed by the Department of Health, but that turns out not to be the case. I got my MP involved and he's rattled a few cages, any decision will be too late for me now, but hopefully it will help others in the future...

As you may have seen on my thread, I had a critical illness policy pay out and I was able to self-fund the chemo. I've just had the 2nd cycle and my PSA is down to 1.4 (was 40 initially) so dropping nicely.

Many thanks for the info.

Nevyn

User

Posted 18 Nov 2015 at 08:29

Hi Nevyn. I don't know if you received the note I just sent you so I will try again. I am glad you have seen my comments. I take it you are just having chemo and not the mix of chemo and hormone therapy that was given to me by Dr K and is now protocol in France. Maybe the fact that France has accepted the treatment as a protocol will help your case. Also, I hope you realize that the PSA test is not always reliable for metastasized cancer (see the u tube lecture by Dr K sent to me. I also have read articles on this) and other tests like a PET scan are needed. Keep up the fight, both against the cancer and against those who refuse to admit the need for utilizing the Dr. K treatment . Lonny

User

Posted 18 Nov 2015 at 09:21

Hi Lonny,

No, I'm having hormone therapy as well, that's been continuous since early March.

That this is now protocol in France hopefully adds weight to the lobbying done by UK oncologists. I think oncologists here would like to be giving both but under the NHS they are constrained by NICE (National Institute for Health and Care Excellence) which decides what treatments get funding. I believe they can prescribe any licensed drug privately.

I will watch that video shortly, thanks, and discuss with my onco when I next see him.

I'm not beaten yet!

Nevyn

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