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Massive Weight Gain

User
Posted 13 Jun 2022 at 18:11

Good evening all, well it is here in the UK. I was diagnosed in April 2009 and was treated immediately by the hospital oncology team. I was prescribed a daily tablet way back then (can't recall name) which continued until about 10 months ago. I have also been having a Prostat hormone injection every 3 months since diagnosis. I had 8 weeks of radio therapy back in 2009. My PSA went from 82 to 0.1 in 2009 and remained that way until about 10 months ago. Then the reading raised over a 10 month period to 1.8. It was then decided to change my daily medication to Dexamethasone 500 microgram.

Wow since then my weight has massively increased, gaining a stone in that short 10 month period. My diet or exercise have not changed during that time. I average 13000 steps a day over a week, playing golf 6 days a week. My stomach has ballooned and I have man boobs. 

I have been told this is all because of the monthly hormone injection and the daily tablets, which are steroids. 

Anyone out there have any suggestions or advice. Bearing in mind I am 62. Kind regards 6

User
Posted 13 Jun 2022 at 22:36

Yes, hormones and steroids have every chance of causing this. One of our members Andy62 https://community.prostatecanceruk.org/default.aspx?g=profile&u=37293

Is the best person to give you advice on living with HT. I hope he will pick up on this thread.

Dave

User
Posted 14 Jun 2022 at 17:43

Thanks Mark. Sorry, hope you didn’t feel under pressure to update 🤦🏻‍♀️😂

My husband was upgraded to Gleason 9 post op which did worry me a little, I would like to think that he will still be here in 13 years and your update really does give us that hope…..so thanks.

Ive been trying to look at how to lose weight on the medication you’re on. One thing I’ve seen is that it could cause water retention so drinking lots of water is a good idea. Definitely ask the nurses about tamoxifen for  breast growth too (although our local hospital urology nurse had never heard of it being used for men). Sorry I can’t be of further help…I’m sure someone will have some more info for you soon.

 

User
Posted 14 Jun 2022 at 17:50

Hiya Elaine, no not under any pressure at all. Will update again once I get my blood test results in a couple of weeks. With regards to water retention, yes my feet are swollen. Thank you for the tip of drinking plenty of water. 

Mark 

User
Posted 14 Jun 2022 at 23:51
After all these years on HT, it is far too late for tamoxifen.

Good to see that you are still kicking around Mark. You should get the ankles checked - it may be lymphodema or could be a sign of heart problems.

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

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User
Posted 13 Jun 2022 at 22:36

Yes, hormones and steroids have every chance of causing this. One of our members Andy62 https://community.prostatecanceruk.org/default.aspx?g=profile&u=37293

Is the best person to give you advice on living with HT. I hope he will pick up on this thread.

Dave

User
Posted 14 Jun 2022 at 00:54

Hi Mark, 

Sorry to hear about your unwanted weight gain. I can’t really offer any advice but hopefully Andy will get back to you. I have heard about a drug called tamoxifen, and believe this can help with breast growth…not sure if you’ve come across it before?

I just wanted to say how great it is that 13 years from being diagnosed at such a young age, things seem to have gone well over the years. I just wondered whether you would be able to add any details to your profile about your diagnosis back then. So many men get diagnosed young with high PSA and are so worried there will be no future for them….it can give so much hope to see you are posting 13 years on…and long may it continue.

No problem at all if you would prefer not to. 

Hope you can get some good suggestions.

Wishing you well

Elaine

 

User
Posted 14 Jun 2022 at 05:01

Thanks for replying to my post, really appreciate it. 

Mark 

User
Posted 14 Jun 2022 at 06:50

I agree with Elaine. I'm assuming because HT was continuous since 2009 that it was advanced when diagnosed, if so then 13 years and counting is quite impressive.

Dave

User
Posted 14 Jun 2022 at 07:07

Thank you for responding. Yes I will add more details about my initial diagnosis. Only opened account late yesterday, so I guess I rushed it. 

Mark 

User
Posted 14 Jun 2022 at 17:27

Hi, I have expanded my profile from initial diagnosis to date.

Mark 

User
Posted 14 Jun 2022 at 17:30

Hi, no it was not aggressive as it was caught early, just a very high gleason score of 9. Perhaps that's why was on tablets immediately. 

Mark 

Edited by member 14 Jun 2022 at 17:32  | Reason: Not specified

User
Posted 14 Jun 2022 at 17:43

Thanks Mark. Sorry, hope you didn’t feel under pressure to update 🤦🏻‍♀️😂

My husband was upgraded to Gleason 9 post op which did worry me a little, I would like to think that he will still be here in 13 years and your update really does give us that hope…..so thanks.

Ive been trying to look at how to lose weight on the medication you’re on. One thing I’ve seen is that it could cause water retention so drinking lots of water is a good idea. Definitely ask the nurses about tamoxifen for  breast growth too (although our local hospital urology nurse had never heard of it being used for men). Sorry I can’t be of further help…I’m sure someone will have some more info for you soon.

 

User
Posted 14 Jun 2022 at 17:50

Hiya Elaine, no not under any pressure at all. Will update again once I get my blood test results in a couple of weeks. With regards to water retention, yes my feet are swollen. Thank you for the tip of drinking plenty of water. 

Mark 

User
Posted 14 Jun 2022 at 19:18
My HT was 47 months starting Sep 2004. From being very fit to putting nearly a stone on pretty quickly was not welcome. But that's as far as gain went. When I went for RT onco said breast growth was fat. Not so sure about that as still some growth even now but a small price to pay for surviving.

Good luck

Ray

User
Posted 14 Jun 2022 at 19:33

You are right Ray, a small price to pay to still be around. I have been told its fat too. 

Take care. 

Mark 

User
Posted 14 Jun 2022 at 23:51
After all these years on HT, it is far too late for tamoxifen.

Good to see that you are still kicking around Mark. You should get the ankles checked - it may be lymphodema or could be a sign of heart problems.

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

User
Posted 15 Jun 2022 at 10:15

Originally Posted by: Online Community Member
After all these years on HT, it is far too late for tamoxifen.
 

Hi Lyn, if the breast growth has only started recently and since the change of medication, would that still rule out tamoxifen being effective? Is it just the fact that you’ve had HT for a long period that it won’t help regardless of when the change happened? 

Thanks

User
Posted 15 Jun 2022 at 10:55

Tamoxifen only works against breast bud/gland growth and any pain/sensitivity too, called Gynecomastia and Mastodynia.

It will stop further growth and pain, and over time will reverse recent growth back to 1 year ago max, but most effectively anything in the previous month or so. Growth older than a year will have significant ligament support which Tamoxofen won't have any impact on. It has around a 70% success rate, so it doesn't work for everyone, although it might be the dose is inadequate in some cases (many find the NICE guideline dose is too small).

Tamoxifen will have no impact on breast fat growth (moobs), sometimes called Psudogynecomastia, and not painful/ultra sensitive.

You will be able to feel if there is breast gland growth or not (or a breast clinic with ultrasound can tell). Gynecomastia is most common in the case of taking only bicalutamide for longer than 2 months, but it can happen on hormone injections too. As we've discussed here, it can also happen for a few months after you get your testosterone back after finishing hormone therapy injections (that might be a year or more after the last injection runs out).

Tamoxifen would be contraindicated in the case of any history or high risk of DVT, and heart conditions. It has a risk of side effects of it's own, including liver toxicity and hair loss, although less likely at the lower doses used for Gynecomastia. If you're on it, probably a good idea to ask for full blood counts and liver function test after 3 months or so, to make sure your liver is coping OK.

20mg Tamoxifen tablets are very cheap, so not a significant cost issue for the NHS (other sizes are much more expensive).

User
Posted 15 Jun 2022 at 12:55

Thank you for the further explanation Andy. Luckily rob hasn’t had too much growth on the HT and fingers crossed he won’t go back on it 🤞🏼interesting what you said about T returning so will keep an eye on that.

 
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