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That was not in the plan.

User
Posted 02 May 2023 at 20:51
That's the thing, isn't it? Is starting HT giving up or is starting HT giving yourself the best chance of being here in many years' time? TopGun started HT when it was clear that systemic treatment was needed, he used IHT successfully and lived another 14 years. Barry has travelled overseas and mixed his hospital usage in the UK to get the best focal treatments he can at each stage. We have others who have been incurable for 15 / 18 and now touching 20 years - different approaches but almost all have reached a point where they accepted HT was needed to stop the bloody thing in its tracks. I don't think anyone has lived 20 years by just hoping for the best. Good use of IHT may be tolerable? I am certain that you will come up with a plan that is acceptable to you and the medical team x

Potential knee replacement on the cards?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 02 May 2023 at 21:25

Thanks Lyn, certainly food for thought. 


I don't think the knee is ready for replacement just yet.


Thanks Chris 


 

User
Posted 03 May 2023 at 10:16
If you have the option of local treatment (surgery, RT, etc) perhaps consider that with hormone therapy for 18 months too IE one last go at a long lasting remission.

Just conscious your cancer hasn't had a sniff of HT to date and combined with another focal treatment (Which has been shown to activate the bodies own immune response) may be enough to get you to 90??
User
Posted 04 May 2023 at 21:02

Another meeting with the oncologist today, following the MDT meeting the suggestion is treat the new tumor with SABR treatment, leave the previously treated tumor alone for the moment, 1, because it is going to be extremely difficult to treat. 2, because they don't normally redo a PSMA scan so soon after treatment and they want to see what happens to it.


Six months of bicalutamide tablets. Can't say I am happy about that, but he used a phase someone else used, if you were my relative that is what I would recommend. 


The treatment will now be done locally, the oh is disappointed, she had almost booked the caravan site and two weeks holiday.


Franci, the body is worn out now , I don't think it would last another 19 years.


Thanks Chris 


 

User
Posted 05 May 2023 at 06:05
Sounds like a plan Chris.. Get your knee done while you are at it, my hip replacement has been life changing.
User
Posted 05 May 2023 at 19:05

It’s good there is a plan now Chris but I’m with you on not being excited about 6 months of bicalutamide and that this is difficult to deal with. Sending best wishes to you and yours. 

Ido4

User
Posted 05 May 2023 at 21:12

Hi Chris,


I wish you the very best of luck with your treatment.  Sorry that the holiday plans have ben disrupted.


Take good care of yourself.


JedSee.

User
Posted 25 May 2023 at 21:32

Guys , what is the long term benefit of being on bicalutamide for six months. If the SABR treatment works on the tumor what is the point of the bicalutamide. If we can't retreat the tumor treated last year surely the cancer will start to grow after the bicalutamide stops working. My oncologist doesn't seem to want to engage in conversations about treatments. I have told him through his secretary that I wish to decline the option of bicalutamide and I will start my SABR treatment in ten days time.


The oncologist will not do another PSA test before treatment. I spoke to my GP this morning and after a long discussion he agreed to give me a Blood test form. I finished up having to use the mental well being card  Yet again I had to correct him that a PSA of 3.6 was not low for a man without a prostate, he did say , sorry I thought you had just has RT, not sure I would say 3.6 was that low after RT.


Are we entitled to have PSA tests even if we are not having active treatment for example being between treatments. Bearing in mind my PSA is rising faster than it ever has ,I just like to know where I am going.Talking to the GP this morning he said man boobs , fatigue and possible kidney damage were all very rare and reversible once the bicalutamide stopped.Any thoughts.


 


Thanks Chris 


 


 


 


 

Edited by member 25 May 2023 at 21:33  | Reason: Typo

User
Posted 26 May 2023 at 06:59
Chris they put you on it prior to treatment to calm the cancer down and contain it at the size they have seen to make targeting better. You stay on it after as the treatment will annoy it and you may get flare. So it’s to to keep T away from an already angry tumour. I was fine on Bical for 11 months. No moobs or soreness although many men report it. Fatigue for a couple of weeks. Best wishes
User
Posted 26 May 2023 at 21:06

Chris. I didn't find the six months Bical too bad. The gynecomastia was the only side effect of consequence. I wish I had been put on Tamoxifen from the start. Three months after finishing the bical the moobs are still here but the tenderness has thankfully gone. Most body hair disappeared and that has not yet put in a reappearance. Six months passes fairly quickly in the wider scheme of things. I wish you good luck with the SABR. Chris

User
Posted 26 May 2023 at 22:13

Thanks guys,


Chris J, from your avatars you look quite fit and slim , the theory is guys with a big belly grow man boobs.I have a big belly.


Chris B onco has said tamoxifen does more harm than the benefit it provides ,got a point blank no chance.Do you have a large belly.


I have been to an in-laws funeral today 55 year old woman who has been fighting motor neurone disease for 7 years,then got blood cancer,she finished up not being able to eat or talk and suffered for the last two years. Certainly focuses the mind and brings things into perspective.


Thanks Chris 

Edited by member 26 May 2023 at 22:42  | Reason: Not specified

User
Posted 26 May 2023 at 22:45

Hello Chris, the onco's reaction regarding Tamoxifen is disappointing. Tamoxifen does increase risk of DVT, so not normally allowed if you've had a DVT before or at high risk, or coronary artery disease. It does cause non-alcoholic fatty liver disease in about 20% of the women who take it for 5 years to reduce risk of breast cancer recurrence, but that's at 20mg/day, which is a higher dose than is needed to prevent gynecomastia/mastodynia while on anti-androgens (such as Bicalutamide), and liver problems are easily checked with a liver function test in any case, so that issue can be picked up before it becomes a problem.


Moobs is usually more associated with increased breast fat tissue, which is different from gynecomastia (which is breast gland growth). The hormone therapy injections are more likely to cause increased breast fat tissue. It's less likely to happen with anti-androgens, but does happen sometimes. Tamoxifen won't do anything to prevent increased breast fat tissue.

User
Posted 26 May 2023 at 22:58

My understanding, based on members here over many years, is the opposite of Andy’s- breast growth is more common on bicalutimide than on hormone injections and is not always reversible. John got moobs on only 6 months of bical and they have stayed put. Very painful when the breast buds started growing and remained sensitive for quite a few months after he stopped the tablets. Fortunately, he had decent pecs so the moobs are not noticeable enough to upset him.


I don’t know why so many doctors and consultants play down the side effects of HT. 


Our NHS trust will not provide tamoxifen or RT to the breast buds. 

Edited by member 26 May 2023 at 23:01  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 May 2023 at 00:31

It's important to understand the two types of breast growth:


Gynecomastia (breast gland growth), often with mastodynia (painful nipple sensitivity). This is caused by the ratio of Testosterone to Estrogens changing. Bicalutamide pushes up Testosterone level but prevents androgen receptors from being able to see/use it, so breast gland tissue thinks there's little/no Testosterone. On the other hand, Estrogens in men are manufactured from Testosterone, and the higher level of Testosterone causes a higher level of Estrogens. So breast glands see very little Testosterone and more Estrogens, which is their signal to grow. Tamoxifen is a selective anti-estrogen, and blocks some of the body's estrogen receptors, notably in breast tissue. (It does not block estrogen receptors in bone, so doesn't contribute to osteoporosis.)


The other type is breast fat growth (sometimes called pseudogynecomastia). This is caused by the loss of Testosterone, and the body laying down fat in a more female form. Breast fat growth does not cause mastodynia. Tamoxifen has no effect on breast fat.


Both types of hormone therapy can cause both types of breast growth. Bicalutamide is particularly well known for causing gynecomastia and mastodynia, typically from around 2 months on the medication (so it's not a problem for the 28 day anti-flare dose). You can feel your breasts to detect if there's any breast gland tissue there (firmer), or just breast fat.

User
Posted 27 May 2023 at 06:24

Chris Bicalutimide is clinically proven to reduce prostate cancer specific death and distant metastasis in recurrent PC:


https://www.cancer.gov/news-events/cancer-currents-blog/2017/androgen-deprivation-therapy-prostate#:~:text=The%20overall%20survival%20rate%20among,group%E2%80%94a%20statistically%20significant%20difference.


The study doesn't explain how it works but is conclusive that it does (50% less PC Death at 12 years).


It also confirmed breast growth in 70% of cases - your GP sounds like he needs to read more.This is easily stopped with blast of radiation to the nips.


Interesting you mentioned your belly, being brutal here but getting rid of that is probably the best single thing you could do to improve QOL and PC outcomes.


 


 

Edited by member 27 May 2023 at 06:25  | Reason: Not specified

User
Posted 27 May 2023 at 08:16

Andy,Lyn,Franci,


Thanks for the valuable information, I am now leaning towards taking the bicalutamide. It is on order and providing I don't change my mind again I will start taking it on the same day as the SABR starts next Wednesday.


Interesting comments about the GP, our practice seems a little lacking on PCa knowledge.


Shifting the gut would be ideal but the aches and pains make it difficult for me to get motivated. My diet is probably not great but I have cut down on the sweet stuff. I am still working on my daughter's house but after a six hour stint I am totally knackered and usually in pain. I do see the physio on Wednesday to see about some of the issues. 


Thanks again Chris

Edited by member 27 May 2023 at 09:56  | Reason: Not specified

User
Posted 27 May 2023 at 20:54
Tumeric helps me I am sure, just not as much as the hip replacement did!

I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.
User
Posted 27 May 2023 at 20:55
Tumeric helps me I am sure, just not as much as the hip replacement did!

I may go on about this but a combo of no breakfast (16/8 fasting) and avoiding bread and potatoes has worked wonders for me. More than 2 inches off my waist and 10kgs lighter. 2 years later it's still off and I have lost the sweet cravings.
User
Posted 27 May 2023 at 21:58

Franci,thanks for the info. I suffer from a low blood sugar problem and if I don't have breakfast when it gets to  around 11.00am I cannot function. I am supposedly borderline diabetic, but not fully there yet.


Thanks Chris 


 

User
Posted 27 May 2023 at 23:50

Tumeric, apple cider vinegar, ginger and manuka honey help with joint pain. 
I’ve noticed some improvement, over the las5 few moths. I also use my rowing machine and do some weights, I have some significant arthritis in hips  and back, this really helps. 


Hope this helps lads.


Leila 

 
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