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Posted , 5 users are following.
Hello
I am 65 in May, in July last year I was diagnosed advanced prostate cancer with a PSA of 893 a Gleason score of 9 and stage 4, it is metastistic in my left shoulder and right pelvis, I was put on the Stampede trial after looking at my options. This included hormone three monthly injections of Prostap 3, 6 three weekly doses of chemotherapy ( doxcetaxel ) and now in the middle of twenty sessions of radiotherapy.
Its been a bit of a haul so far quality of life is not the best, as I had with the chemotherapy plenty of side effects, the only ones I missed were urinating blood.
just had another cortesone injection in my shoulder help me move it more easily and mask the pain, back is another thing, but until the radiotherapy finishes I am putting up with that.
I am always looking for people who have had a simuler profile to me and how they changed what they looked for as in medication or new trials.
I changed my diet compleatly, now on radiotherapy I had to change again as fibre is a no no, again if any has gone through this any suggestions?
thanks for any advice.
0 likes, 9 replies
dbcriss joeven
Posted
Hello Joeven,
I've no insight to offer but was curious why no fiber?
joeven dbcriss
Posted
Because fibre effects the stomach and causes things like diahorrea, the radiotherapy saps your energy and also gives you stomach problems,so you need to replace it with carbs to keep the fine balance.
hope that explains
barney34567 joeven
Posted
When you were offered radiation, were you given the choice of less sessions but in higher doses than twenty sessions on, I assume, less than very high doses?
joeven barney34567
Posted
Because of my very high PSA and Gleason and being T4 I was offered a choice of two trials and I choose Stampede of which radiotherapy was the last part.
If you read about the progression of radiotherapy studies were done about how many sessions to have, it seems it did not matter if the sessions were shortened and the radiotherapy was strengthened so my perticuler session is twenty days with weekends off.
hope that explains.
barney34567 joeven
Posted
How do we know that your participation on the trial was worthwhile?
Was a scan performed pre trial to be compared to a scan post trial?
Was the PSA measured pre trial and will it be compared to the PSA post trial?
joeven barney34567
Posted
Hi Barney
I know I was in the main group not the placebo, there was a scan plus other tests done before I started the trial and my PSA is monitored throughout the trial and after as well as anyone who is on the trial is constantly monitored every three months.
As regards knowing if it's been worthwhile, well my quality while everything has been thrown at me has not been great, Iam hoping once the trial finishes , some attention might be turned to my pelvis and rib, as while on the trial they are reluctant to interfere with the planning and stages of the Stampede trial.
barney34567 joeven
Posted
Best wishes for the balance of the trial.
And for the radiation that will follow.
sallyyyy joeven
Posted
Hello
My husband was diagnosed in October with a very high PSA in the thousands and widespread mets.
Unfortunately his diagnosis was too late to join stampede and so hasn't had radiotherapy but he is having ht and has had early chemo. Have you joined the Prostate Cancer U.K. Online community. There is an 'advanced' Pca board there.
All the best for your treatment.
joeven sallyyyy
Posted
I am a member of a number of forums and yes I am a member of that community.
Not good news about your husband, that sounds pretty severe, but I have heard of others with a high PSA who are still doing ok, here are medications out there for bone mets that give relief from pain for around 8/10 months maybe longer, have you looked into this ?
Hope things pick up for you and your husband.
Take care