HT without Chemo

Hi Ally2 , welcome to our club.  Chemo will attempt to kill off the PCa whereas HT will suppress it, so not really dealing with comparable things.  Quality of life is generally important but to most of us, length of life seems to be very important.  What is the 6 month chemo you are being offered and how would you tolerate it seem key.  I had Docetaxel which I didn’t tolerate well but others have had no problems with 6 x 3 weekly sessions.  If you can tell us more about the drug, hopefully you will get some others joining in.  David

Hello Ally2 

A warm welcome to our little part of the Macmillan Online Community, although I am so sorry to find you here.

You pose an interesting question and remembering none of us are medically qualified and this is only a peer to peer support forum my initial thoughts are:

* The Decapaeptyl injections will reduce your testosterone and deprive the cancer cells of their "food" and will stop growing - hence the reduced PSA.

* The addition of one of the second generation of androgen receptor blockers will help pain control and should extend life expectancy by continuing to suppress the cancer.

* Has your team considered Radiotherapy?

* You are 74 and it sounds like you have a very good quality of life - chemotherapy would mess with this (I am not saying Hormone Therapy won't but not to the same extent).

* I am a great believer that no one can forecast "life expectancy" - if you have a positive attitude and are willing to forego Chemotherapy (which should kill off the cancer) then it's your choice - and that's a personal choice.

I do hope my thoughts help you with your choice of treatment.

Best wishes - Brian.

Hello Ally2 and welcome from a wife whose husband also has advanced metastatic prostate cancer spread to lymph nodes and viscera, but not the bones. Can I add in some more thoughts but these are personal based on our experience with dealing with an aggressive high risk prostate cancer.

You say that you have several lymph nodes plus a spinal met. Are the lymph nodes confined to the pelvic area or are they more widespread? This is what has been seen but there are probably more which are circulating and not picked up unless you had a PSMA PET scan.

Hormone therapies suppress the cancer but after a while the cancer learns to get its food another way and so become resistant, and usually more difficult to treat. No one can predict how long the HT will work before resistance occurs. You have several high risk markers which put you into the very high risk category indicating more aggressive primary treatment would help with time to recurrence and overall survival.

Chemotherapy and radiotherapy are treatments which can kill the cancer. There are other options such as Lutetium 177 which grabs hold of the cancer cells but at the moment this is not widely available. Immunotherapy is limited depending on gene markers.

The current thinking on treatment, based on Phase III trials, is that Triplet Therapy offers the optimal route for putting your type of cancer to bed for the longest time. This consists of the hormone injection, an antiandrogen such as Enzalutamide or Darolutamide, plus 6 cycles of Docetaxel administered every 3 weeks. The criteria for this is that it is optimal when the Docetxel and second generation antiandrogens are started within 12 weeks of having the first hormone injection.

A course of whole pelvic radiotherapy, preferably with a boost to the cancer spots would deal with the 'mothership'.

At the moment the Decapeptyl is bringing the PSA down nicely. The aim would be to get it down to 0.1 or less within 6 months as this can be used as a predictor of likely recurrence.

The spinal mets could be receptive to a targeted radiotherapy called SBRT.

Chemotherapy can have bad side effects but some men have very few. We were talking to our oncologist who said that one of his patients decided that they would use the good days during each cycle to visit a different island and they managed it. We personally planned doing things for about 10 days during each cycle but it did take some determination.

Treatment decisions are a personal choice and something you need to discuss with your family. How would they feel about visiting you rather than you visiting them during treatment.

I wish you well with your deliberations and please keep asking questions.

Hello Brian & Alwayshope,

I thank you both for your input.

I can't be too specific about what chemo options may be offered to me as my appointment with Oncology isn't until 22 January, but the Urologist who put me on Decapeptyl told me that they would be offering me Triplet therapy which would involve Chemo. 

I know that Chemo is supposed to help extend  life expectancy but at the cost of 6 months great inconvenience I am so mixed up about whether or not it will be worthwhile. 

My family all do live overseas & I am always happy to be able to spend time with them, they are young & busy with heavy workloads so are largely unable to visit me here.

You mention 6 cycles of Docetaxyl administered every 3 weeks, does this give extensive periods of time away from treatment between cycles? Periods of time which could be long enough for travel abroad? 

Thanks once again for your valued input, the more info I can get the better.

I look forward to hearing from you again

Ally2

Hello again Ally.

The way the chemotherapy works is that you will need to have a blood test a couple of days before each infusion which you will have on day 1. The easiest way I can describe things is to give you a timeline based on my husbands experience.

Day - 2. Blood test to get a baseline of reds, whites, liver, kidney....

Day 1. Infusion at hospital which can take between 2 and 4 hours.

Day 2. All fine.

Days 3 to 5. Feeling grotty and limited to what he could do.

Day 6 to 8. Things improved.

Days 9 - Day 21. Back to normal but just a bit more tired.

Day 20. Blood test to check that everything is ok.

Day 22. Infusion at hospital.

And so the cycle is repeated. We found that each cycle followed a similar course which meant we could plan activities around the treatment days and good days. As no one knows how you are going to react to the chemo it is best not to plan anything after the first infusion and if your experience is not too good after it then there are things which you can take to make the next cycle better. The tiredness did build up the more cycles my husband had. The chemotherapy does affect the immune system so you would have to be more careful around people with bugs and  generally we adopted COVID like precautions. 

The other thing to stress is that there is this 12 week optimal window between starting the Decapeptyl and starting the chemotherapy, plus it is important to start the chemotherapy and the second generation antiandrogen tablets at the same time - you should not start the tablets before the chemotherapy. This information is pretty new and is the result of trials which indicate a better long term outcome in respect of time to recurrence.

There are also tricks which can help with things like hair loss such as a cold cap. Sucking ice cubes during the infusion can help reduce changes to taste sensation. Chemotherapy is not pleasant but my husbands comment at the end of it was that it was not as bad as he thought it was going to be.

This was just.my husbands experience but I hope others will be along with theirs, particularly those on Triplet Therapy. 

Hello Ally2 

I can't add much to the cracking post above from Alwayshope (she's spot on with that post!) but I can give you two links to blogs written in the last couple of months by 2 Community Members, one going through Chemotherapy and One on Triplet Therapy-

community.macmillan.org.uk/.../prostate-cancer-recurrence-triple-therapy

 Grant’s prostrate cancer Chemo blog 

I do hope reading these help (or not).

Best wishes - Brian.

Hello Ally2,

I'm sorry to see you've found it necessary to be here. I'm the author of one of the blogs Millibob referred to, have finished chemo and am now on my remaining two elements of triple treatment for the long term - Prostap and Darolutamide.

Has your consultant offered you different options for treatment? Perhaps Decapatyl + Apalutamide or Enzalutamide without Chemo or Triple including the chemo? If so, he/she should be able to give you an indication of how long these treatments might work for you (not life expectancy because if they do stop working other treatments remain available). My consultant did, although our circumstances are different so I won't go into detail other than to say that Triple has been shown to be more effective which was attractive to me.

One major concern for my wife and I was overseas travel which we were taking maximum advantage of since retiring (I'm 68 and stopped work 5 years ago). I decided to go for Triple on the basis of sacrificing 6 months or so in return for the improved chance of further problem free health and travel for several years afterwards. This was a personal choice made by the two of us.

There may be two practical issues to consider:

- if you need travel insurance you are likely to find it very difficult, if not impossible, to get any cover whilst undergoing chemo. The good news is that cover should become available again when chemo is finished - I'm about to go away for a month in early January.

- with 3 week cycles, blood tests and consultant meetings there's not much time to fit in travel and as cycles progress you will probably not feel up to it. Alwayshope has outlined all of the issues in her earlier post.

Not an easy position to be in I'm afraid and it's a difficult decision to make. 

I hope whatever you decide works well for you.

All the best, Derek.

Hi Alwayshope, Millipore & Excavator.

Thank you all so much for your help.

Thanks to you I am starting to feel a little more confident about my future choices & in particular which questions I should ask when I do finally meet with the  Oncology consultants ( 33 January next).

I feel very torn between the choice of Triplet therapy or declining the chemo & opting for my existing Decapetyl + Apalutamide.

If anyone has any input regarding this very difficult choice I'd love to hear from them. 

Has anyone just stayed on  Decapeptyl ? If so how long did it work for and how are you doing going forward?  I ask because I have had my first 6 monthly Decapeptyl injection ( 13 November), & it's been great, practically no side effects & all of my urinal & bone pain symptoms have practically disappeared. Wish I could just stay on that but how long will it last?

Looking forward to all your help & ideas

Ally2

Hello Ally2 

It's a hard choice and not only do you need to consider your medical conditions, it's a question of quality of life too.  Don't forget the younger you are the easier it is to combat medical interventions and treatment side effects.

Personal experience - I had an initial PSA of 182 - the original thoughts were the cancer had gone "walkabout" urology spotted a "shadow" on my pelvis and it was though I would be on treatment for life.

11 months later when I arrive under oncology (click on my user name or avatar to find out why there was a delay) they decide to treat with a view to me being on a "Curative Pathway". 3 years HT and RT.

So 3 years down the line on Decapeptyl  only and Radiotherapy thrown in for good measure I have a PSA of 0.29 - Am I cured? I don't know - I should be, but I have avoided Chemotherapy and the last 3 years have been amazing, I have flown to Turkey 3 or 4 times a year and have had other holidays too.

So the above isn't medical advice and isn't Macmillan guidelines - it's just the "thoughts of Brian" I hope it helps. Happy to answer any questions.

Best wishes - Brian.

Hi Ally

I think everyone wishes they had a crystal ball for how long their treatment works but the only certainty is that it is not forever. The only other generalisation is that for high risk patients the cancer seems to be more receptive to treatment and giving better outcomes if it is hit hard at the beginning when first challenged with a combination of HT and something designed to kill the cancer like radiotherapy or chemotherapy. I have found a comparison which gives you an idea of the range of effectiveness for ADT and different second generation antiandrogens.

https://www.onclive.com/view/apalutamide-demonstrates-robust-real-world-effectiveness-in-mcspc

I have also attached the article on Triplet Therapy if you want to plough through it.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10136811/

I hope this helps.