Internittent hormone therapy

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User

Posted 07 May 2018 at 14:07

Has anyone had experience with intermittent hormone therapy.

I have now been on Triptorelin for 3 years now, with usual side effects, loss of libido, hot flushes, fatigue and more frequent urination. I was diagnosed with advanced prostate cancer and it had spread outside the prostate area and to bone. After a follow up bone scan last August there are no signs of the cancer on the bones.

I am reasonably fit despite treatment and exercise daily and run 3 or 4 days a week. Some time ago i started getting dizzy feeling and short of breath and tired in my legs. This would happen ocassionally and not in a regular manner and some not as bad as others. Anyway after an ecg i seemed to have a heart rhythm problem. So further checks followed including treadmill with ecg which confirmed the initial ecg. I have now had a heart scan and angiagram which are all good. My blood pressure and pulse and cholesterol are also good. I do have a low resting pulse in mid 50's

Hormone therapy can cause cardio problems and i believe it may be due to low testosterone which can cause heart rhythm and conductivity issues.

My psa has been stable throughout at about 1. I don't want more complications and am considering stopping my hormone treatment for a while to see if that causes heart issues to go away. I am fed up with the other symptoms from adt anyway so would like a break. I am not afraid of cancer and have never been affected by the cancer itself, just the treatment. I would be interested to see what this topic brings. Thanks in advance for any comment.

User

Posted 07 May 2018 at 21:50

The two big champions of IHT are George_H and Si_ness - you could also look up Topgun who made IHT a specialism while he was still here!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 May 2018 at 00:43

Some me do quite well in having a hormone holiday but because this has been a regime that has not been tried for very many years, whether this is as effective as not having a break needs to be more thoroughly researched. The idea of a break and for a time at least a reduction in side effects is attractive but may work better for some than others. It's always a good idea to obtain the views of and work with your consultant on this.

Barry

User

Posted 08 May 2018 at 09:05

hi,i stopped ht on july 4th 2016 after 2yrs 4mths was supposed to be on for 3yrs ,but onco said to stop because of side effects,at my last 6 monthly checkup my psa was 0.05 in dec, testesterone nil.coming up to my next checkup 18th june.

User

Posted 08 May 2018 at 16:58

Hello
I too am very interested in IHT.
I've been on Prostap and Enzalutamide for 3yrs 4months.
I started with a psa 199 (235 by the time HT started) and has been around .05 for the last 38 months.
I like you am fed up with the side effects.
I too have an irregular heartbeat (plus 2 stents)
Every time I see my onco (now every 6 months) I ponder about going onto IHT
She says there's no proof and no coming back onto the Enzalutamide

Trouble is :-
there doesn't seem to be any proof it's better.
Why try to fix something if it's not broken.
The grass is always greener..... if you can do most things with the HT then why change.

I've recently restarted my running. I'm still a long way from where I was but I'm up to 4 miles and dead chuffed.

I'm not sure if this helps but I hope so.
Keep in touch

Paul

User

Posted 08 May 2018 at 21:43

Thanks for your helpful replies. I am still unsure as in many ways my quality of life is a lot better than many with peostate cancer. I think one of my problems is the lack of support here in Scotland. I see a urology specialist every six months and all they are interested in is that my psa is still low and stable. I asked to see an oncologist but was told as i am on hormone therapy thst is not possible. Though my gp has told me he will put that through if necessary.

There used to be a prostate cancer specialist nurse with her own clinic and i could ring or email anytime. She unfortunately left and was not replaced and the prostate clinic has been put into the urology clinic. More cuts i suppose. I get great help from this site and Maggie's and can also speak to our local Macmillan nurse so have support. Unfortunately they don't have axsay in treatment!

I am still going to try and make up my mind one way or another. I know on man who has had several spells of intermittent therapy over eleven years. Sadly the last year or so has finally caught up with him and the cancer is now very active again. There doesn't seem to be any pattern to any of this and we are all different. We have to make up our own minds. My mext jab in July and and if i have that then another 3 months to think about it if my mind is still not made up. I will keep you posted.

User

Posted 08 May 2018 at 21:51

Not sure if it is different in Scotland but I think you should push for a meeting with the oncologist - if not yours then a second opinion from another one. It is unimaginable to me that someone with incurable cancer is not allowed to see the oncologist!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Dec 2018 at 16:12

Only just found this so I'll jump in as I'm currently on a 'holiday'.

Initially told to be on Prostap for 3 years but like those above, the side effects became too much. Silly comments such as those above about why would you change, the grass is greener, there's no evidence etc are a clear indicator of not understanding the situation for many men. This isn't just about the inconvenience of some hot flushes. Having serious suicidal thoughts and being told by the doc you are clinically depressed is not to be taken lightly.

So, like the OP the first doc I saw suggested a holiday after 2 years. I asked if this would interfere or become a problem with my long term outlook. He categorically said no. He also referred me to another doc, a consultant, a month later to ask the same question. She said there is no difference in outcomes between intermittent and permanent. She based this on the latest figures at the time - this was July 2017. So my last (for now) Prostap was October 2017. Both docs warned me that the side effects can take up to 12 months to subside and in some cases may be permanent.

It took around 6 months for any changes to be felt and that coincided with a PSA rise from 0.01 to 0.05 after 3 months. Another 3 months on and while still 0.05 no hot flushes, much better sleep patterns and best of all, no suicidal thoughts causing dark days and upsetting my wife with bad thoughts. Libido was returning and around 7-8 months after the last injection, ED had disappeared. However, this was a mixed blessing as the orgasm sensation was quite different and of course, dry. No one ever told me that due to inactivity I would lose 2 inches in length which has never recovered. These improvements have mirrored exactly the PSA rising steadily and went to 0.4 after 3 more months then to 0.8 at the last test.

These figures are considered normal by the doc so remaining on 3 monthly PSA tests. Once it reaches 2.0 will they put me back on a treatment.

So, the question is: would I stay on permanent or opt for intermittent HT? Its a no brainer for me - intermittent.

Hope the OP comes back and tells us what he decided in the end.

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