Digarelix not working

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Hi all,

I have been posting about my husband who was due to start Enzalutamide alongside his digarelix injections. He had a starting PSA of 1356 and after 3 months on digarelix his PSA has risen to 1500, they are now saying he could be in the 2% of other cell cancer! He is 73 was diagnosed in April with mets to bones and lymph nodes around prostate area. 

It seems we are back to the drawing board and he will now have a biopsy, they also said other rarer prostate cancer cells do not usually cause such a big increase in PSA so they are a bit confused which has unsettled us even more! 

Anyone had similar problems please and does anyone know what the new treatment path could be? 

Thank you in advance 

  • Hello  .

    You have set me puzzling as to what is going on. The Degarelix is normally very effective at reducing testosterone and then PSA. It could have been possible to have had one injection failure, but not 3, and I presume your husbands testosterone shows that he is at castrate level, preferably below 0.7 on the scale used in the UK. The biopsy will try and pin down the exact type of rare prostate cancer your husband has as well as whether it exists on its own or in combination with a more common type. Once they have this information they will be able to know what the best treatment plan is but I would think it would be with a systemic treatment like chemotherapy, and maybe with combined drugs to hit it hard. HT is usually continued either with the Degarelix or they may decide to try something like Prostap as it works in a different way, and they may still add in the Enzalutamide. Radiotherapy could also be offered either concurrently or sequentially. Please remember I am not an expert. Most prostate cancers are hormone sensitive but your husband's type does not appear to be responding as expected which implies that a large element of it is hormone resistant - this is something which is seen developing the longer the patient is kept on HT so they are developing ways to treat it. Immunotherapy may also be a possibility so check that the biopsy sample is also going to be gene tested. If he does have one of the rare types he might be invited to become part of a trial to test other forms of treatment.

    Please keep us informed of what is happening and I hope he has the biopsy soon.

  • Thank you for your reply. Yes his testosterone is 0.4 so it's working for that it's the PSA that is going up. Very strange, he swerved the biopsy to begin with as all the scans etc showed advanced prostate cancer. He had 2 injections on the day of diagnosis, one in May and one in June and the blood results in May showed a slight increase and blood result from 1st July showed a bigger increase! The consultant was also confused which has worried me! 

    Thank you 

  • Hi Enya52.

    I'm very sorry to hear that your husbands PSA is going up but it is strange that his testosterone is still low but like Alwayshope has already said that we aren't professionals.

    Sorry to hear that the consultant is also confused which is also very strange indeed.

    I do hope that you're husband's medical team manage to get things sorted very very soon???

    I have got my next PSA check on Monday so I do hope that it has  also stopped rising fingers and toes crossed!!!!

    "Never mind what will be will be "

    Prostate Worrier.

  • Hi all,

    A question:: if one hormone therapy (digarelix) first and only treatment since diagnosis in April,  isn't lowering the psa level does that mean that no hormone treatment will and chemo will definitely be needed? Or are there other treatments that might lower it? Chemo was his very last resort and as he was diagnosed in April it seems we have jumped so far down the line already if chemo is the only way forward? Thank you all 

  • Hi  .

    It is possible that a different hormone therapy can reduce the PSA but it is too early to speculate what the experts are going to recommend. My husband was also adamant that he would only have chemotherapy as a last resort but in reality he said it was not as bad as feared and, if necessary, he would do it again. If your husband has a rare variant then the experts will have a plan.