Length of Zoladex treatment after EBRT: 36 or 18 months?
Posted , 5 users are following.
I was diagnosed just over a year ago with PC (likely T3aNOMx, Gleason 8)), started on Zoladex 3-monthy implants in Feb 2017 and completed a standard course of EBRT last autumn ((37 X 2 Gy). The zoladex is scheduled to last for 36 months in total,
The side-effects of the Zoladex seem to me to be cumulative: I am increasingly tired, less muscle strength despite regular exercise, hot flushes, bouts of depression, increased waistline, and total loss of libido. I am wondering whether to ask my oncologist if it would be OK to stop this hormone therapy after 18 months, instead of going the full 36 months. in support of this, I came across a summary of a Stage III trial carried out in Quebec comparing 36 months vs 18 months, with 630 patients with high risk PC, divided into two randomised groups. It seems to show no significant difference in outcomes:
I wonder if anyone has any views on this? I would so much like to be able to stop the hormone therapy and try to get my body back to something like normal.
Anthony
0 likes, 8 replies
jastf anthony37993
Posted
My experience was very similar to yours. I more or less said no further hormone treatment because like you I was having a really bad time. I discontinued 6 months after RT when my second PSA was 0.1. Nine months later I still have hot flushes occasionally at night..usually after exertion in day. Other side effects steadily lessening..especially glad the induced depression is going. I read as many trial reports as I could find and there is only a small percentage increase in recurrence risk over 5 and 10 years and I was not prepared to suffer any more. It is your body not your oncologist's; talk it through ...yes. Continue to suffer..up to you. Many do not suffer the same side effects and think we are over reacting. All the best and wish you patience with recovery.
anthony37993 jastf
Posted
Thanks for this good advice, jastf, and I'm glad to hear that your side effects from zoladex are gradually diminishing. You have given me some good arguments to use when I next see my oncologist
Best wishes for your recovery.
glamour anthony37993
Posted
My experience may well help you. I was diagnosed in Dec 2004 [PSA 11.0 Gleason 9] I was put on Zoladex in Jan 2005 until Aug 2005. From mid April 2005 to mid June 2005 I had 40 shots of radiation. My PSA was 0.2 when i came off Zoladex in Aug 2005. My PSA remained low until late 2013 when it began to rise to 13.0. I was again put on Zoladex for 6 months. PSA then down to <0.1. My PSA gradually increased until Oct 2017 when again I had to return to Zoladex. As of today my PSA is 0.2 and I expect to come off Zoladex for 2-3 years.
?My oncologist does not believe that long periods of Zoladex inplants gets the best results as your system gets used to it. Short bursts of 6-8 months he prefers as results have had long term success for me and other patients. I am now 77 years old and have lived with prostate cancer for almost 14 years. Can't help with the Zoladex symptoms. Originally when I asked would the treatment ruin my sex life, my oncologist said, I can save your life or I can save your sex life. If I don't save your life you wont have a sex life anyway.
Cheers
G
anthony37993 glamour
Posted
Thanks for your reply, Glamour: you've helped me decide to argue the case for intermittent - rather than continuous - zoladex treatment the next time I see my oncologist. Interesting to learn, too, that there are clearly differences in opinion amongst oncologists about optimal treatment protocols.
Good to know that you've survived OK for 14 years after initial diagnosis, even if those years have been celibate ;-(
Best wishes
glamour anthony37993
Posted
Celibacy did not arise for about 8 years after diagnosis so my wife and i were in our 70's before things started to go south. So we did okay.
G
barney34567 anthony37993
Posted
A few things comes to mind.
1. Yes you're spot on writing that HT is cumulative in is side effects. I know this from experience :-)
2. I had hot flushes often from DEGARELIX (known in Australia by its brand name "Firmagon"
which
is a monthly injection. I asked for an alternative and swapped to Zolodex 10.8 every 3 months and suffer
less side effects
3. While you're told that HT will go on for 3 yrs, it's often the case that the therapy is re-evalauted over time depending on a patient's progress.
4. Have you had a PSMA PET CT scan to look for the PCa possibly spreading?
5. Are you on any other meds?
anthony37993 barney34567
Posted
Hello Barney - thanks for your comments. To answer your questions:
- the only other PC-related med I'm on is tamsulosin, which is supposed to reduce the number of times I have to get up each night to pee (but it doesn't seem to make any difference on that score, although it does relax the bladder muscles and make peeing easier)
- I had a bone scan 12 months ago as part of the initial diagnosis, pre-treatment: fortunately, it was negative. But when I asked my oncologist 2 months ago, post-EBRT, if I could have a PET scan to check whether the cancer had spread (ie in my mind, to check whether the EBRT + zoladex had had any effect other than lowering my PSA to nearly zero), he said, and I quote verbatim " ...don't let's go looking for trouble" ! I found this rather alarming, and I shall ask once again for a PET scan next time I see him.
As a matter of interest, is it the norm in Australia to do a PET scan post-treatment to check on whether the treatment has been effective in arresting the spread of the PCa cells? (I'm in the UK, and I have to say that the treatment I've had so far, completely free, from the NHS - my GP, and local hospital urology dept and and Macmillan cancer clinic - has been brilliant, thorough, and timely. I just don't understand why follow-up scans are not done routinely, especially as a low PSA reading does not necessarily mean that the tumour has been zapped.
Cheers
PS Given the testosterone-related topic of this forum, and you being in Australia, I can't resist asking whether you're suffering from the current epidemic of 'ball tampering' amongst your cricketing countrymen ;-)
barney34567 anthony37993
Posted
As to the cricket, I am amazed that such an incident is the lead story in our news every hour on the hour for 4 days now. One would think the country had nothing else to worry about. Frankly I think such cheating is a secondary story. Th primary story is to ask: what are our cricketers doing playing against any country whose government is encouraging attacks on white farmers. Killed in the name of "land redistribution".
Now to serious matters. Scans as a follow up to treatments are common in Australia but WHAT scan one undergoes varies. I have the finest scan that can pick up tumors, that is the PSMA PET CT and have it twice a year. It is not covered by our socialist medical system (Medicare) or by our private health system funds because BOTH organisations deem this as "experimental", which it is not.
Prostate Specific Membrane Antigen Positron Emission Tomography Computd Tomography (PSMA PET CT) scan to rule out any metastasis which shows the success of surgery or RT. This scan is used to rule out metastasis and differs from bone density scans that look at bone erosion.
In your shoes I would get a PSMA scan and then discuss possibly joining clinical trials or taking new or some say, experimental meds.