MSI test

[spw1]

Hello all, Further to my post about genetic results, the MSI test came back with a low result. Three out of 13 unstable markers. The unstable ones are BAT 25, NR21 and ABI20B. It has a proviso that chemoradiated tumour may not give accurate result. What does this mean? I am sending it to Prof De Bono but does this rule out them offering pembrolizumab?

[Tall_Allen]

MSI-hi is very rare - about 3% of PCa cases. You have a result you don't like, and you seem desperate to turn a cow's ear into a silk purse. You are better off devoting your energies to more likely treatments.

[spw1 in reply to Tall_Allen]

I am not sure I understand your comment. I am desperate, yes, to keep my husband living and as well as I can. I WILL look into every possibility. We have nothing on offer where we live and he is under hospice care, declining every week in his physical abilities, facing the decline bravely and with dignity. Several weeks ago we sent a sample of his biopsies and the results have come back. I owe it to him to look at anything and everything and this is a forum where I should be able to ask questions if I do not understand what we have. I know that MSI high is rare but it is my duty to check what his results mean in case someone has anything useful before we just give up on him. If you do not have anything constructive to say, you simply do not need to reply. I have a husband with a cancer I do not like - and we have not had a result on a test that we like for months. We have consultants who are happy to pass him on hurriedly to hospice because they do not know what to do and when they had a chance they would not add Carboplatin to Cabazitaxel. We have had famous trial doctors keep him hanging on for months with offer of this or that investigation until he became disabled. It would be nice to have met one doctor who says, 'you maybe a difficult case and I do not know why nothing is working but let me leave no stone unturned.' Instead we face a system where even getting a scan is difficult and we have to fly an ill man across the seas to get one of those. Have a good weekend

[Seasid in reply to spw1]

You could update his profile so people could understand his situation and say something appropriate.

I would recommend you to consider contacting Tanya Dorff from City of Hope in California. She has a track record trying to help people.

One out of options Australian 4 years ago received an Email with her recommendation of Clinical Trials running in Australia appropriate for his situation.

If your profile is not updated it is difficult if not impossible to recommend anything to you.

The really best would be to you to contact privately a medical Oncologist who understands your situation and who could do recommendations about availability of options to you.

You said that your husband is in hospice care now. I USA according to my information they stop any life expanding treatments once you are in a hospice care.

As you know the inclusion/ exclusion critaria are designed to eliminate not mobile people from the clinical trials.

I am still mobile but my MO looks at me when I am walking into his office in order to eliminate me from any clinical trial or PBS treatment if I am not mobile enough.

I am saving money to pay for my medication if I am not eligible for a government PBS one.

Ones you are In a hospice care it is even questionable if they will give you blood transfusion anymore. I really don't know the legal situation in UK. You can consult your legal services about this information. In a hospice the goal is to make you comfortable and not to extend your life.

Find out more about your legal situation and update your profile.

I wish you luck. The same happened to my ex wife father in Zagreb, Croatia. I believe the doctors just ignored her once his father was in a hospice. They (the doctors) didn't make clear to her the legal system.

[NIKKIWOOD in reply to spw1]

I am very sorry you are not getting the answers you want in the UK; but I am here to defend Tall_Allen, one of the most valuable and knowledgeable participants we have in this little forum. In fact I've had one MO that I don't think knows as much about prostate cancer as he does. That said, I wish you and your husband the very best in dealing with this horrible situation.

[Hidden in reply to spw1]

Hi spw1. I do not have any answers to your questions. I am sitting beside my husband who has aggressive varient matastic prostate cancer in hospital. He had carboplatin and etoposide chemo yesterday. Today and tomorrow he has etoposide only. I do not know where we go with all of this. However you must keep asking questions, even if you do not like the answers. You must not give up fighting for your husband, which I know you won’t. Stay strong, be brave and keep fighting. Ginny x

[j-o-h-n]

To spw1,

You're a wonderful wife and caregiver............ and Tall_Allen is a great resource for many many members..... Friendly Fist bump between you two 🤜🤛

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 02/26/2023 11:08 PM EST