Hello from Sweden! My husband has pca with rp in 2011, followed by rt in2013

[tasmanien13]

My husband nowd has 2 enlargened lymphnodes and currently No treatment. Hej hade RP in 2011 and was G9 with ps 32. What to expect? Terrified wife

[LearnAll]

People with advanced Prostate cancer can live from 5 yrs to 15 years as there are a lot of different treatments available in modern times.

He needs to see a cancer specialist and design a treatment plan. Not treating it can be risky.

[tasmanien13 in reply to LearnAll]

Thank you! Do you think tjat survival is possible event with mets?

[Magnus1964]

He should be on some antigen deprivation therapy. There are plenty in use, casodex, zytiga, xtandi, Lupron, etc. When one fails move on the next. Your husband could get a lot of good quality life.

[tasmanien13 in reply to Magnus1964]

Thank you so much and please excuse My bad English.. so you think he van live for some more years? He also have a heart issue, but exercising daily. We have suite Young sons and he wants to be herr for Them. God bless you all in these bad times❤️

[Magnus1964 in reply to tasmanien13]

Everyone responds differently to these drugs. But if he can tolerate any side effects, yes he could live many more years.

I was diagnosed 27 years ago and still going strong.

[tasmanien13 in reply to Magnus1964]

🙏, thank you , Magnus, your answer means everything to me!

[LearnAll in reply to tasmanien13]

There are many many people like Magnus...who are living with metastatic prostate cancer for last 5 ,to 15 and even 20 years with proper treatment. There is lot of hope.

[tasmanien13 in reply to LearnAll]

Learn all, thank you for giving this hope to us ! I am so grateful that I found you. All THE best to you!

🙏

[Tall_Allen]

Did his salvage RT include those lymph nodes. He should be taking something to shut down his testosterone production plus abiraterone.

[tasmanien13 in reply to Tall_Allen]

Hello Ta! I DO not know THE size of THE radiation field, maybe he can those modes radiated now ?

[tasmanien13 in reply to Tall_Allen]

Hello, it seems that psa is rising slowly, although we have decide not to learn the numbers because of our fright extrapolating. My husband has a scint and a gammacamerascan ahead of him, but 2 enlargened lymph nodes that we know of. The nurse did not want to change the dates for earlier because of "doctors decision", she got irritated when i asked today.

So we have to wait for all this, but i do appreciate your messages here, ie that this can be treated for a long time ahead!! Thanks again and all the best to all of you!

[Doggedness in reply to Tall_Allen]

Although maybe not Abiraterone if he has heart issues?

[Tall_Allen in reply to Doggedness]

Why do you say that?

[timotur]

Would suggest starting Lupron if not already, and investigate options for radiation to the pelvis. Possibly get a PSMA-scan to check for bone mets first. Lot of options left.

[tasmanien13 in reply to timotur]

Thanks, we thought this was THE END...

[dadzone43]

NOT the end. There are many options and Sweden offers good medical care. You will know more after the bone scan/scinti-scan. Is a "medical oncologist" directing his care and helping you with decisions? I believe that most on this forum would agree that hormonal therapy is necessary. In English, called ADT, or androgen-deprivation therapy. These are drugs that lower male hormone (androgens) production in the body. Two important things: don't despair and keep fighting this beast.

[tasmanien13 in reply to dadzone43]

We areseeing a wellknown doctor here in Sweden, he is also oncologist. My fear is that it has gone to far, but wecould not get an earlier appointment. It is great Comfort to Read all your comments that this is Still possible to treat! You seem to know a lot and realise My worries! Thank you so much and all THE best !🙏

[dadzone43]

Yes, I realize your worries. I also have enormous respect for your trying to negotiate this forum when English is not your native tongue. I could never do that if the "tables were reversed." I had the joy of visiting Sverige in 1995 and have unforgetable memories of that trip and of the people I met. Excluding myself, this forum has a wide range of experience and of wisdom. Lycka till dig och din man.

[LearnAll in reply to dadzone43]

I also have a special relationship with Sweden. A friend of mine was Swedish. Fifteen years ago, she gave me a puppy (half boxer, half American Bull Dog)... He has grown old now but is still with me ...reminds me of my Swedish friend...who moved back to Sweden about 12 years ago . I have great regard for Swedish people due to my good experience with them.

[tasmanien13 in reply to dadzone43]

This is fantastic, to be able to "talk" to you and get so much kindness in return, I am Forever grateful. I so wish to invite you Good People to Sweden, but THE world is closed these days..all THE best to you and thank you for answering My cryptic writing!

[tasmanien13 in reply to dadzone43]

DO not exclude yourself from all THE wise men here, you är One of Them! Tack för hälsningen!

[j-o-h-n]

Hello Ms. Devil..... you found a great group for help and for kindness... Tell Mr. Devil that unless he is killed by a jealous husband he will be around for many many years. Pca is a slow growing disease and with all the new drugs being discovered he'll be shopping at IKEA and eating those meatballs for at least 20 more years.... So make sure you kiss and hug him every day so he can remember how wonderful you are.

Courtesy of Google Translate: Lycka till, bra hälsa och bra humor ...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 04/15/2020 6:38 PM DST (formerly Uncle Sam's birthday)

[tasmanien13 in reply to j-o-h-n]

John, your Reply means soo much. Thank you for comforting me and giving me hope in this battle. Maybe My husband get to live to see His future grandchildren.. your humour is invaluable. Keep Up this Good works! All THE best! I Will think of you every Times we est meatballs, suite often

[Patrick-Turner]

Hi tasmanien13,

2011 to now is 8 years, and you say without more treatment after RP, and most of us would be amazed that constant following treatment has not been done with say ADT, maybe added EBRT, IMRT, and Cosadex or Zytiga or Xtandi, to suppress growth of Pca.

I'd also suggest you need to get your husband to have a PsMa Ga68 PET/CT scan to more accurately know what his Pca status really is.

He may need to have Lu177 treatment, which is available near you in Europe.

The only certain result of ignoring Psa rise and not treating Pca is that Pca becomes so advanced that nothing can properly stop it killing a man. I had a Gleason 9 in 2009 at age 62, it was inoperable.

But because my oncologist was able to lead me to whatever was possible, and because he agreed to what I found was available, the two of us have managed to keep me alive with good QOL since 2009. But if I did not get Lu177 last year, I might be in palliative care now.

Patrick Turner.

[tasmanien13 in reply to Patrick-Turner]

Hello Patrick, this is so scaring... That is why i am so worried,now, that it is to late...

[tasmanien13 in reply to Patrick-Turner]

Hello, maybe My husband can get radiation to mets and adt therapy? Is that possible event efter salvage radiation in 2013? Scared wife

[Patrick-Turner in reply to tasmanien13]

There are a number of possibilities, but if Psa has gone high, and your husband has Pca symptoms with bone pains then I strongly suggest he start ADT immediately. As I said before, his cancer status needs to be understood, and the only reliable way to do that is to get the most sensitive scans available.

At research hospital Peter Mac in Melbourne Australia the research docs think that PsMa Ga PET + CT scan is best scan to get. Without the best scans and analysis by radiographer, doctors can only guess what cancer status is, and where the mets are, and docs can't put together a simple good treatment plan, and you will remain afraid and worried because you just don't know what is happening.

It is possible that using IMRT, EBRT ( X-ray beam radiation ) + ADT ( hormone therapy ) might be enough to reduce whatever mets your husband has, but there's always a good chance a PsMa scan will show so many mets that having IMRT or EBRT applied to all mets would be impossible because of side effects of so much radiation which affects the healthy tissues in the X-ray beams before hitting the met, and then continuing on out through the healthy tissues.

The best available radiation in many Pca patients is now done with LU177 that is targeted and this means a very tiny amount of radioactive lutetium, a rare earth metal, is deposited at all mets where its alpha or beta particles then work on the met because these particles only travel about 2mm max in body tissues.

The lutetium is made to gather in body mainly at met sites only. A harmless chemical added to the lutetium makes it become targeted radiation, and I found side side effects to be negligible when I had 4 infusions last year.

Now you may find any mention of nuclear medicine very scary, but I can assure you there just is not much to be sacred of, because the lutetium's radiation reduces by half in days, but enough of it gathers at all mets both big and small to kill the Pca in the met site. Its action is not perfect, and the the greater the amount of Pca a man has in many mets, the harder it is to kill all the Pca, but I had a good response.

You need to get your husbands doctor to order a PsMa scan, and this may show he will respond well to Lu177, and the Lu177 therapy is available at a few places in Germany. There are other possibilities to be considered, such as your husband's cancer having mutated to become endochrine, a form more difficult to treat.

These possibilities will explored and you should just what is wrong with your husband and how best it might be treated but having PsMa scan would be an essential first step, plus immediate start of ADT. Psa should rapidly decline. However, the PsMa scan gives best results when Psa is about 2 to 10.

Possibly all this is too much for you to comprehend, and I can only suggest you need the best you find the best oncologist available who fully understands all the available treatment options.

I have survived very well with Pca since diagnosis since 2009.

Patrick Turner.

[tasmanien13 in reply to Patrick-Turner]

Thank you so much for this extensive answer and i know nowwhat to ask for. Your statement about a Good living with pca is so comforting and hope this Will be possible for My husband to. He feels well, No pain but has a heart issue with stents and High bp, he is taking statins! PSA slowly rising .sorry about My phones autocorrecting....All THE best!🙏

[CalBear74]

Tasmanien13,

You have received very useful suggestions. I have learned over the past two years of posting here that you should listen very carefully to everything Tall Alan tells you.

I was diagnosed in 2012. I was a Gleason 8 with a PSA of 16. No surgery because of two metastases to my pelvic bone. No radiation because of the metastases. I was started on Lupron and have been on it ever since (ADT).

Mitt bästa råd är att lyssna på höga Alan.

[tasmanien13 in reply to CalBear74]

Thank you Calbear! I have received a lot of Good information, it is just My mind that is so full of despair. I just wish I had a Little bit hope in all this confusion

Your info about several years om successful treatment do make me feel better though. Thanks🙏

[tasmanien13 in reply to CalBear74]

So 8 years om ADT, DO you find it Hard to tolerate? All THE best?

[CalBear74]

The side effects of Lupron are mild. They were more difficult in the first three years to tolerate but now I don’t have any problems with the Lupron.

My best to you and your husband.

[tasmanien13 in reply to CalBear74]

CalBear, is Lupron first choise? So reassuring to hear that it can last for years. My anxiety is almost unbearable, ie I have to taket tranquilisers.. I want to support My husband, but it is Hard right now. Your support is invaluable, thank you and all THE best to you🙏💐

[CalBear74]

Yes, Lupron is my first choice. I know there are many other excellent second line ADT drugs that should work. Drug resistance could develop at any time but I am not fearful of that possibility.

Since 2012 there have been a large number of new drugs developed and there will be more in the near future. Practice mindfulness and your anxieties should subside. Ask Tall Allan about Mindfulness.

[tasmanien13 in reply to CalBear74]

Thank you again, I Will try