KIND OF DESPERATE: Hello, I find... - Advanced Prostate...

Advanced Prostate Cancer

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KIND OF DESPERATE

tuta1960 profile image
16 Replies

Hello,

I find myself, us family, in a new and bad situation for my father.

Unfortunately, we find ourselves in a new and difficult period for us.

We have reached the stage of Xtandi, Docetaxel and now, Abiraterone does doesn.t cope. Introduced 3 months ago, abiraterone allowed the PSA to grow again by almost 50%. After discussing with the doctors, I understood that now, depending on what the CT scan shows, we will resort to radiotherapy and, if that is not possible, we will resort to cabazitaxel.

However, I understand that we are starting to struggle for survival. The situation is getting harder and harder.

The doctor suggested that we do a genetic test to see if the disease has undergone mutations. If it is confirmed, we could access immunotherapy. We have come to hope that mutations will be found.

I know that we are in a difficult phase and we are very scared because we do not know how much and what we can do. I am starting to think more and more about methylene blue and other combinations.

Please help me, if you have been through this, please help me with advice, with an opinion. Maybe we are not close to the end. My father is young, he is 64 years old and has been fighting this miserable disease for 3 years.

What surprises us is that he is fine. He has no pain, he is not losing weight, he is ok. His muscle tone has decreased but we know that this is because of the treatment. Otherwise, he takes walks, does light exercises, drives, picks up my child from school..

We are not well, emotions are overwhelming us, we hope in God and doctors.

Thank you and I wish you health, it is all we need!

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tuta1960 profile image
tuta1960
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16 Replies
speranza10 profile image
speranza10

It's not time to despair yet, your father still has some good bullets to throw at the beast. Cabazitaxel is a good option, some patients have done very well with it. Then if it is available in your country also pluvicto. If the genetic test results are brca+ you could also try olaparib (lynparza) Good luck I wish you the best.

tuta1960 profile image
tuta1960 in reply tosperanza10

Thank you! He had before the brca 1+2 tests and they showed up to be ok, negative. It.s about another test, one that might found out about a mutation. We.ve seened now the scans, there are 2 mets, growing and active mets, we are still waiting for the dr to tell us what.s next

I.m glad the disease didn.t extand to the liver, lungs... i feel that we still have a chance. Maybe God will help us further and it might stop for a piece of time. We need it

Thank you for your kindness!

Tall_Allen profile image
Tall_Allen

Are Xofigo or Pluvicto available in Romania?

tuta1960 profile image
tuta1960 in reply toTall_Allen

Unfortunattely, noThe dr said he.s goin to do a special genetic test, other than brca1 and 2, he made these an were ok, for seeking for mutations. And, if there are some, we will do some immunotherapy.

I have just received his result for the head to toe computer tomograf. There are 2 mets, we.ve seen them Last time în progression, that are still rising

I guess, these are the ones to make psa rise. I guess he will take some radio sesiune and, maybe, we will go further with abiraterone.

I.m not sure.

But, please, dear Tall_Allen, tell me, are we going down? Are there very few chances for us? Must we aspect the worst?

Thank u for your replica

Thank God I can talk to you, all

Tall_Allen profile image
Tall_Allen in reply totuta1960

In the following trial, they combined chemo with Xtandi in patients who had already failed Xtandi, and the Xtandi worked again.

prostatecancer.news/2022/10...

tuta1960 profile image
tuta1960 in reply toTall_Allen

Thank you! Our dr told us we might come back to xtandi but not now and she seemed upset. I am sure she also hoped for a long lasting abiraterone response. She said that we might be in a crossed resistence stage now.She said we will attend cobazitaxel bu O feld she was upset.

Thank you Tall_ Allen! You are kind !

Tall_Allen profile image
Tall_Allen in reply totuta1960

Please send her the link.

CoastalTex profile image
CoastalTex in reply toTall_Allen

From the PRESIDE trial, it looks like the best outcomes were for patients that continued Xtandi while also being treated with docetaxel. Is that the way you read it? My primary MO told me I would stop taking Xtandi while being treated with docetaxel. It sounds like these trial findings would disagree with my MO and that perhaps I should stay on Xtandi during my upcoming docetaxel infusions.

Tall_Allen profile image
Tall_Allen in reply toCoastalTex

I recommended combining Xofigo and Docetaxel for you.

NecessarilySo profile image
NecessarilySo

I'm not a doctor and I know my ideas don't click with everyone, but I want to tell you a bit about my own story, with the hopes that it might help your father. I learned I had PC in 2008 and I didn't know I had stage 4, APC until 2012. I learned back then that lycopene helped relieve my metastases pain, and along with ADT, Lupron, it seemed to kill the metastases cancer cells. But the mets seemed to continue to show up and I found that heat, 106 degrees F, kills all cancer cells. So I managed to eliminate my metastases, actually about 20 of them, using heat and lycopene. Then I found that magnets also seem to kill my mets. So now I am essentially metastasis free. I don't know if these will help your father or not. All I can say is that you might try them. They are free and easy. In the meantime, just follow the drug advice of your doctor and perhaps some from this site. Best wishes.

tuta1960 profile image
tuta1960 in reply toNecessarilySo

Such a kind answer, but, please, tell.me, how can we get to that kknd of heat? Îs there any process to take? I will surelly look for your admise. Thank you!

NecessarilySo profile image
NecessarilySo in reply totuta1960

Best way I found was to take a 2.5 pound weight from steel barbell set, boil it in water, then let it cool to 150 degrees, then wrap in a kitchen towel and put directly on the metastasis. Remove it when it is too uncomfortably hot, but then replace it, trying to let the heat soak into the metastasis for several minutes, at least. That is for lymph nodes which are near the surface of the skin. As for deeper mets, I have not had, or organ mets, I have not had, so I would just guess that heating pad or possibly sauna might work for those. I also used hot hot showers, 110 degrees, for a count to 25, for skull metastases and neck lymph nodes. You have to use your imagination, but also you need to be careful not to scald. It is best to use a temperature measuring device to try to achieve 110 degrees minimum, for a short time, half a minute, minimum. Hot bath might work for pelvic area.

garyjp9 profile image
garyjp9 in reply toNecessarilySo

Where did you come across the heat and magnet treatments?

NecessarilySo profile image
NecessarilySo in reply togaryjp9

Generally I just Googled them. Hyperthermia has been used for cancer for a long time. Magnets also. One article said that 106 degrees F was discovered to kill all cancer cells back in the 1920's. A magnetism article said that a man lowered his PSA by sleeping on a magnetic mattress. I tried them both and they worked. Doctors seem skeptical and afraid. Studies are avoided, imo.

garyjp9 profile image
garyjp9 in reply toNecessarilySo

Thanks

CAMPSOUPS profile image
CAMPSOUPS in reply totuta1960

Hi tuta,

I saw "desperate" in your post title and I practically prayed that no one would throw the type of information you were thrown by Necessarily. His diagnosis, extent of cancer, actual medical treatments, and history of his responses, and condition he is currently in are all different from you father.

You efforts, time, energy are much better spent in interest of medical science.

I hope the very best for you and your father. Your special to be involved in his care. Not everyone automatically cares for their parents.

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