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Is Chemo the only answer?

User
Posted 17 Feb 2024 at 17:36

Hubby has castrate resistant PCa and had robotic surgery five years ago. Once they found the cancer had spread to his hip and the Prostrap injections were not keeping the PSA down they treated him with Enzalutamide (4 per day) and Bone strengthening infusions every 6 weeks. That combination worked very well for 3 years but now the PSA has risen from 0.3 to 2 and they say the next step is limited to chemo & no other treatment available. I’ve asked about Luteum 177 but didn’t get a good response as it’s not available on NHS, the response to my next question about Medicinal Marijuana was even more of a brush off. They don’t want to consider anything other than chemo and as we all know this destroys healthy cells & the immune system so not too keen on that option. Does anyone have any stories or suggestions that could help please? Thanks in advance. Heather

User
Posted 19 Feb 2024 at 13:37

I had 6 rounds of Docetaxel back in 2019.  As others have said above, it certainly isn't as bad as some chemotherapy drugs, and there are some 'hacks' that make it easier to tolerate.  

The hacks I found really effective were:

-- take a vitamin B supplement that has high doses of B6, B12 etc throughout the treatment.  This helps to prevent nerve damage and peripheral neuropathy (tingling, numbness and loss of feeling in hands and feet)

-- suck ice cubes or frozen fruit cubes during the chemo infusion, helps to prevent loss of taste buds and lessens 'metallic mouth'

-- when self-injecting the GCSF before each infusion, take the antihistamine loratadine.  I had terrible bone pain from the GCSF injections, because they basically send white blood cell production in your bone marrow into overdrive.  The loratadine took away the pain completely.     

I know just the word 'chemotherapy' sounds scary and conjures up all sorts of nasty images.  But Docetaxel really isn't that bad.  After the first cycle, it's entirely predictable:   you feel great for 3 days because of the high dose of steroids, then you'll crash off the steroids and feel like you've got 'flu for 4 to 5 days, then you'll recover and have 10 to 12 days of feeling fine, then it's time for the next infusion.  But with the hacks I've mentioned, and keeping active, it's totally manageable.  

 

User
Posted 19 Feb 2024 at 08:30

Hi 

I'm going to receive my 3rd cycle of docetaxel this week, experience of 1st two cycles are in a nutshell "I'm coping with it well" 1st week after injection I'm tired,slight nausea, headache,bone ache and taste in mouth,next 2 weeks QOL is pretty good,you do get sent home with a cocktail of drugs... steroids,anti sickness tablets,self inject yourself for 5 days to help your white blood cells.

Hope this helps regards Phil 

User
Posted 19 Feb 2024 at 13:42

Originally Posted by: Online Community Member

1st week after injection I'm tired,slight nausea, headache,bone ache and taste in mouth,

Hi Phil - when you start doing the self-injections, get some loratadine antihistamine tablets and take one every day that you're injecting, it really does take the bone aches/pains away completely.  Note that it must be loratadine, no other antihistamine works.  You can get it at Sainsburys or Tesco dirt cheap.

I had awful bone pain from the GCSF injections, my wife found that loratadine can help and it certainly worked for me.

cheers,  Craig

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User
Posted 17 Feb 2024 at 21:31
Chemo will be docetaxel which is better tolerated than many chemotherapies - it certainly isn't like the pictures you will have in your head of 'people on chemo'. My father-in-law had docetaxel at the age of 79 and the biggest issue he had was not being allowed to go to the pub between days 5-8 of each cycle in case he picked up an infection! He also had the horrible metallic taste in his mouth but sucking pineapple chunks seemed to reduce that problem a bit. We have members on here who continued to work full time throughout docetaxel treatment although it is more common for men on chemo to have already retired or to be off sick at this stage.

I suppose the decision you have to make is between chemo and palliative care - untreated advancing cancer cells also destroy healthy cells and the immune system struggles to cope.

There is also Radium 223 but this doesn't really treat the cancer systemically, it reduces the side effects of bone mets - so if he isn't in a lot of pain from the met in his hip, R223 can be counter-productive as for some men the bone pain gets much worse on R223 rather than better.

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

User
Posted 17 Feb 2024 at 21:39

Thanks for that info. It’s certainly put my mind at ease a little regarding the chemo option.

User
Posted 17 Feb 2024 at 21:45
Honestly, it may not be anything like as bad as you fear. Also keep in mind that they will be planning 6 or 10 cycles - if it turns out to be horrendous and he stops after 3 cycles, it will still have had some effect on the cancer šŸ‘ No one would make him keep on having it if he was badly affected.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Feb 2024 at 22:07
Iā€™d love to hear of some alternative protocols or private treatment that is available extra to the NHS if anyone has any info Iā€™d be very grateful to hear it. šŸ™šŸ»
User
Posted 19 Feb 2024 at 08:30

Hi 

I'm going to receive my 3rd cycle of docetaxel this week, experience of 1st two cycles are in a nutshell "I'm coping with it well" 1st week after injection I'm tired,slight nausea, headache,bone ache and taste in mouth,next 2 weeks QOL is pretty good,you do get sent home with a cocktail of drugs... steroids,anti sickness tablets,self inject yourself for 5 days to help your white blood cells.

Hope this helps regards Phil 

User
Posted 19 Feb 2024 at 13:37

I had 6 rounds of Docetaxel back in 2019.  As others have said above, it certainly isn't as bad as some chemotherapy drugs, and there are some 'hacks' that make it easier to tolerate.  

The hacks I found really effective were:

-- take a vitamin B supplement that has high doses of B6, B12 etc throughout the treatment.  This helps to prevent nerve damage and peripheral neuropathy (tingling, numbness and loss of feeling in hands and feet)

-- suck ice cubes or frozen fruit cubes during the chemo infusion, helps to prevent loss of taste buds and lessens 'metallic mouth'

-- when self-injecting the GCSF before each infusion, take the antihistamine loratadine.  I had terrible bone pain from the GCSF injections, because they basically send white blood cell production in your bone marrow into overdrive.  The loratadine took away the pain completely.     

I know just the word 'chemotherapy' sounds scary and conjures up all sorts of nasty images.  But Docetaxel really isn't that bad.  After the first cycle, it's entirely predictable:   you feel great for 3 days because of the high dose of steroids, then you'll crash off the steroids and feel like you've got 'flu for 4 to 5 days, then you'll recover and have 10 to 12 days of feeling fine, then it's time for the next infusion.  But with the hacks I've mentioned, and keeping active, it's totally manageable.  

 

User
Posted 19 Feb 2024 at 13:42

Originally Posted by: Online Community Member

1st week after injection I'm tired,slight nausea, headache,bone ache and taste in mouth,

Hi Phil - when you start doing the self-injections, get some loratadine antihistamine tablets and take one every day that you're injecting, it really does take the bone aches/pains away completely.  Note that it must be loratadine, no other antihistamine works.  You can get it at Sainsburys or Tesco dirt cheap.

I had awful bone pain from the GCSF injections, my wife found that loratadine can help and it certainly worked for me.

cheers,  Craig

User
Posted 20 Feb 2024 at 08:05

Hi Craig

I'll look out for it

Cheers phil

 
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