My dad has advanced cancer: Hello... - Advanced Prostate...

Advanced Prostate Cancer
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My dad has advanced cancer

azulmsalas
azulmsalas

Hello everyone! My name is Azul and I am from Argentina. My English is very bad and I am using the Google translator. Hope it's understandable...!

My dad (59 years old) was diagnosed with prostate cancer in February 2020. In Dec. 19 his PSA result was 100 although that number is not exact because when the analysis was done the laboratory "cut" at 100. As far as he could having been 101 or 5000. In January ´20 the biopsy showed a Gleason 4 + 4 (8), stage D2 and the PET Colina illuminated the prostate, bladder and inguinal glands and pelvis. It started with the hormonal block in February: monthly Goserelin injections and daily Bicalutamide. In March, its psa fell to 10.17 and in May to 2.10. Against this background, we have thousands of opinions. Urologists tell us that evolution is favorable and that it continue like this. Oncologists no, that the psa should have dropped to 0 and that it is at 2 means that "the blockade is not working and the cancer already shows that it is resistant to castration". A group of oncologists propose to start chemotherapy with Docetaxel and others Abiratirone. One group proposes to attack from the entrance and another to wait and "not burn stages". Urologists tell us that they are the ones who handle cancers and oncologists that urologists don't know anything about cancer! It is very frustrating to be in the middle! None proposed radiotherapy or other treatments that I was reading in the forum that I do not know if they would apply to this case but perhaps they are options ... I do not know ... it is all so new ..!

I was reading the forum a lot and I found very courageous testimonies from people who are in treatment for many years and that gives great encouragement!

In Buenos Aires, medicine is good and we have access to all medications free of charge, but I ask if there is any place in the world that is recommended to have a second opinion or a treatment that is not available here.

I hope it was understood.

Greetings to all from these distant lands ..!

Azul

36 Replies
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HiddenThis reply has been deleted
azulmsalas
azulmsalas
in reply to Hidden

Yes ... The oncologist who in March demanded that my dad start Docetaxel now tells us that "luckily they didn't" because the psa was going down well ....

Whimpy-p
Whimpy-p
in reply to azulmsalas

Doctors are ( practicing Medicine ) on us all. 🤙🏽

Bienvinidos Azul! I am sorry about your father . My father had this also . ! Google works well! Others here will answer your tech questions . I appreciate you helping you father . My Urologist told me that I’d do one treatment, but then I got my prostate cancer specialist involved and he choose another route , that turned out the best for me . Urologist like surgery , if possible ? I am your fathers age. I’d be proud of a child like you . Very nice to see the love .. Be well Azul! Paz a Argentina ✌️

His type of prostate cancer is called "newly diagnosed, metastatic, and hormone sensitive." He has many bone and lymph node metastases. He had a good response to goserelin, which is prognostic that it can be controlled for a long time. He will take goserelin (or orchiectomy) permanently. Adding docetaxel would be a good next step. After 6 infusions, 3 weeks apart, he will be able to move onto the next step - a more powerful hormone therapy (abiraterone, enzalutamide, or apalutamide). If he does abiraterone before docetaxel, it may be 3 years before he can try docetaxel. In general, using medicines earlier has a greater effect in extending life and improving quality of life than waiting to use them later. Also, side effects are fewer if used earlier. So it is very much preferred to use as many as soon as possible to get the most benefit from them.

He needs a urologic oncologist, not a urologist. The urologist may be useful only if he has urinary difficulties. Radiation of the prostate in cases like his has no survival benefit, but it may prevent urinary difficulties later on. There is no rush to do this, but you can discuss it later with his oncologist.

My dad started with orcidectomy and zytiga ( psa 292. Gleason 9. Multiple Mets) then are you saying that he cannot take doxelataxel for the next 2/3 years?

Some men take Zytiga and docetaxel at the same time, but it is experimental.

jfoesq
jfoesq
in reply to Tall_Allen

Tall_Allen

I have been on Lupron for 8 yrs and Zytiga for a majority of those 8 yrs, and had 3 vacations during that period. I am still responding well. But, my question is - what will follow these medicines , if, as you indicated, one has to wait a few yrs following Zytiga before starting Docetaxel?

Thank you

Tall_Allen
Tall_Allen
in reply to jfoesq

You can begin chemo after you stop Zytiga.

Thanks for your answer! All the oncologists I saw agree that the PSA of 100 was "very high", that the only option is Docetaxel and that its prognosis for life is no more than 3 years. Reading in the forum I find cases of PSA of 5000 and people with more than 10 years in treatment ... From there arises my mistrust in oncologists

No one has a crystal ball. They are just quoting group statistics, which don't predict for the individual. You have to take it one day at a time.

jfoesq
jfoesq
in reply to Tall_Allen

Thanks for you reply. And, thank you for all the info you provide here. I almost wish you were my MO.

TA gave you the best advise..

You said: "Oncologists no, that the psa should have dropped to 0 and that it is at 2 means that "the blockade is not working and the cancer already shows that it is resistant to castration"

I don't agree with this statement. Unless the PSA has reached it's lowest point (nadir) and risen again and is greater than 2, he can not be considered castrate resistant.

It looks to me like the "blockade" or androgen deprivation therapy is working well so far. His PSA could easily continue to go down and a long, slow decline actually has a better prognosis. Some men don't reach their lowest point for over a year.

I agree that adding 6 cycles of Docetaxel at this point is a good idea since it's been proven to add to overall survival time. I did it when I was first diagnosed and the side effects were quite tolerable as they are for most. If he does it now, he's done in 18 weeks and can do a second-line agent such as Xtandi or Zytiga later on when he becomes castrate resistant.

Read my posts about my brothers Glioblastoma(brain cancer). The medicine we are killing his huge tumor with is known to be sucessful with prostate cancer too. It only costs $.50 cents a day and you can buy it at the pet store. Read my posts, watch the Joe Tippens video on YouTube. There is no downside to trying this. The only side effect is 5% of people get diarrhea. Hope you research and try this. It's been a miracle for us.

I hope you can understand my english if you use the same translater program which tells your story to me well in english, after you wrote it in Spanish.

ADT with Goserilin and Cosadex may well work for a year or many years to keep Psa low, and when Psa goes up fast again, maybe docs stop the Casodex and start your dad on Zytiga or Xtandi and continue Goserilin and maybe Psa is suppressed for additional time.

But suppression times vary for different men. When the additional drugs added to ADT all fail to keep Psa low, it may be time for Docetaxel chemo. This does not always work.

I doubt you could get Lu177 used in theranostic treatment in Argentina, and you dad might have to travel to Germany to get it.

This could be impossible due to Covid 19 travel restrictions.

And it would be expensive.

To qualify to get Lu177, a PsMa Ga68 PET/CT scan is needed. And maybe an FDG PET scan as well. These are expensive scans.

Oncologists in Argentina should know all about options that are available in USA, Germany, and other places even if they are not available in Argentina. There would be more than one oncologist in Argentina who could give a second opinion.

Urologists are good at during surgery to bladder, prostate gland, and all the pipes below the waist. But I found they did not always know when new forms of radiation such as Lu177 became possible and available. Urologists cannot always remove a prostate gland because there may be too much cancer wrapped around the prostate gland, and this happened to me in 2009 at time of diagnosis of Gleason 9 at age 62, Psa only 6.0, so I had X-ray EBRT plus ADT as first treatment, and I have survived OK for over 10 years but I needed several types of drugs in addition to ADT injections. Lu177 gave me a good year of Pca reduction but I need more of it now because Psa is rising again.

I am not a doctor, but I have read a large number of stories from men about their Pca.

I live in Australia and had the common generic ADT drugs. ADT worked for 6 years before Cosadex was added, I got 6 months more, then got 8 months more after Cosadex was stopped and I had Arbiraterone.

The survival rates for more than 10 years with Pca begin to get less as years go by.

Some men live for 2 years after diagnosis and some live 20 years.

Patrick Turner.

Hello! Thank you for sharing! I’m perhaps stupid (well, sometimes I know I am) but I didn’t understand this sentance ”The survival rates for more than 10 years with Pca begin to get less as years go by.”

Is it getting more and more positive as years go by..? Better odds? Or opposite?

We all have an unknown number of years to live after we are diagnosed with Pca.

Most of us are between 55 and 65, so the number of years is always going to be less than when we were 20, even without taking Pca into account. None of us live forever.

I have lived 10.5 years since diagnosis and I have no clue how many more years I'll get. but if treatments I am getting keep Pca down, and under control, maybe I get 5 years from now, but unless I get a miracle which I don't believe in, I think 5 years is being wishful, and overly optimistic. Some new treatments may arrive in time to make my survival reach out longer.

Or I could be run over by a bus.

Or when I ride around our Lake Burley Griffin, a whale might leap out and devour me as I cycle past close the water.

Or if I cycle around up near Parliament House I might get hit by large turds from the many flying pigs circling around overhead. These are in fact the political responses to C19 virus.

I could be electrocuted in my shed from working on vacuum tube gear.

But once upon a time at 23, I was told I was "The Man they could not root, shoot, or electrocute" and I didn't mind that description.

Now at 73 I happen to be Pin Up Boyo at local Canberra Hospital because I'm the healthiest stage 4 cancer patient they have. I'd rather have a different claim to fame, but as Ned Kelly, our most famous and celebrated bushranger ( outlaw ) said in the day he was hanged, "Such is life".

I have a pile to read about things I gotta do prior to getting more Lu177 on 24 July next, Keep well, and do not go insane.

Patrick Turner.

I recommend you get the Prostate Cancer Foundation's Patient Guide for guidance

Go to - pcf.org/guide/prostate-canc...

Hola Azul. Soy medico, argentino, radicado en New York. Tengo cancer de prostata avanzado desde hace 8 anos. Me atiendo en el Hospital Memorial Sloan Katherine. Cuando voy a Buenos Aires consulto con un medico muy recomendable. Se llama Martin Greco. El consultorio esta en la calle Coronel Diaz 2760 PB A, y el telefono es 4802-1665/4240. Podes mencionar mi nombre. Sabe mucho, buen medico. Atiende a otros amigos mios alla. Buena suerte

Hola Pablo!! Gracias por tu respuesta. Me voy a poner en contacto con Martin.

Vi que el Memorial Sloan Katherine tiene un servicio de segunda opinión remota. Quizás sea una buena opción. No se...estoy tan mareada con toda esta situación!

Te mando un beso y gracias nuevamente

Azul

Te entiendo. Es dificil. Consulta con Martin y si te gusta quedate con esa opinion y seguila sin mirar atras. Lo de la consulta en el Memorial tal vez sea una buena idea, no se como funciona. Como minimo querran reveer la biopsia. Martin esta muy al tanto de lo que se hace en todo el mundo. I am sorry for those that don't speak/read spanish. But speaking someone's own language is always comforting. And if curious, Google translate the other way around!

Beautiful to read your Spanish and so happy you are able to offer this connection for consultation to her. Thank you for all you do here and in your work. Paul aka Pablo tambien tokaido.

Si, en los próximos días me pongo en contacto con él. Ahora en Caba estamos, nuevamente, en cuarentena estricta...

Un abrazo argentino a la distancia!

¡Hola Azul! Lamento que tu padre esté pasando por esto, el mío también lo descubrió a los 50 años. Encontrarás mucha gente agradable, apoyo y esperanza aquí.

Soy tu vecina pero mi español es muy malo, necesito estudiar. Abrazos brasileños, espero que encuentres la mejor solución 💚🙏🏼

Olá! Si, estoy muy contenta de haber encontrado este grupo.

Obrigado vizinho! (mi portuñol es malo!)

HiddenThis reply has been deleted
azulmsalas
azulmsalas
in reply to Hidden

Thank you! I'll do that

El fenbendazol no está en la lista de medicamentos aprobados para el cáncer de próstata en los EE. UU.

translate.google.com/transl...

Un medicamento relacionado La niclosamida solo se encuentra en una etapa temprana de ensayo clínico en combinación con otros medicamentos avanzados para el cáncer de próstata.

translate.google.com/transl...

Hola Azul! Te deseo que encuentres respuesta a todos tus interrogantes y que tu papá salga adelante. Este es un foro fantástico, hay mucha información, apoyo y también cariño. Es donde uno puede refugiarse ante la angustia, pues siempre hay una respuesta. También soy de Argentina. Un abrazo grande y muchas fuerzas para vos y tu papá.

Gracias! Si, es cierto. Me dio muchas mas tranquilidad frente al panorama desolador que me dieron los oncologos. De que ciudad sos?

Rilu
Rilu
in reply to azulmsalas

Hola Azul!!! Yo soy española. No desesperes. A mi esposo le dieron entre 11 meses y 3 años. Los 3 años ya han pasado y está estupendo, guapisimo!! 🥰🥰🥰🥰 Su psa ahora subiendo de nuevo pero vamos navegando, van saliendo continuamente nuevos tratamientos. Este es muy buen foro. Tambien te recomiendo el de facebook"prostate cancer lastest research". Toma nota e investiga sin desesperarte, siendo consciente de lo que hay pero no dejando que nadie, ni ningun doctor, te desanime. Sólo son estadísticas 🤞. Muchos ánimos!! Aquí nos tienes!!!

azulmsalas
azulmsalas
in reply to Rilu

Gracias! Es cierto lo que decís. La clave está en no desesperarse! Te mando un beso y me alegra mucho que tu esposo rompa el pronostico!

Saludos desde Venezuela, Azul! Siempre es reconfortante tener la oportunidad de leer y escribir sobre estos temas en español jaja..

A todas y todos los de habla castellana, les propongo hacer un grupo de WhatsApp o algo similar, para compartir opiniones, tratamientos e incluso emociones. Estar en este proceso no es sencillo y en lo particular me ha venido muy bien hablar sobre el caso de mi papá con muchas personas de este foro y otros.

Tu papá ha tenido una maravillosa respuesta al tratamiento, así que seguramente tiene mucho tiempo por delante.

Un abrazo para ti y lo mejor para ustedes!

Si, claro! Es muy buena idea. Creo que es muy importante el apoyo mutuo en estas situaciones!

Greeting Mr. Blue, from red and white..... You're indeed a great son for your dad.... I would normally use Google translator but my translator doesn't speak Spanish.....Adios...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 06/29/2020 7:49 PM DST

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