any hope ?: Hi guys my darling dad at... - Advanced Prostate...

Advanced Prostate Cancer

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any hope ?

saeed_alexy profile image
62 Replies

Hi guys

my darling dad at age 67 founded by psa 51 n/mg we start to piopsi and bone scan

cancer was G 3+5 = G8 and bone scan was negative

after 2 mount we had appointment for pet/ct scan

result was awful several skeleton metastases several lymphoma and sadly lungs is involve

doctor start to hormone and when i crying and asking for survival time he said it depend and run away from answer

my dad has not special pain in body but he cough to much...

i had 6 mount to 30 and my little sister want to mirage can you answer my how much time we have with treatment to ...

also we live in Iran and my country is under sanction and most of the drugs have much price and rarely funded in drugstore

thanks you

with hope for real cure

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saeed_alexy
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NPfisherman profile image
NPfisherman

No one can know for sure how long anyone has....each case is different......If they start hormones, it should likely be Lupron and casodex, and if possible....Zytiga...He should exercise regularly--walking, and if possible, weight lifting for bone strength....it is hard to say what they will do since he is being treated in Iran and I am not familiar with the protocols there...you are a good daughter to come here looking for answers..

All the best,

Don Pescado

whatsinaname profile image
whatsinaname in reply toNPfisherman

Saeed Alexy is a male. Later in the thread, he says his doc told him to start testing his PSA from the age of 40.

in reply towhatsinaname

Scammers abound

Tall_Allen profile image
Tall_Allen

Docetaxel, used early, is a good thing to consider. It is available as a generic drug. You will have to see how well he responds to it.

GP24 profile image
GP24

The treatment will start with Bicalutamide/Casodex for two to three weeks followed by Lupron injections, this is hormone therapy. Then the doctor will recommend to add Chemo with Docetaxel.

It is difficult to say how long your dad will live from now. If a Chemo with Docetaxel is added, the average is five years, but your dad may live longer than the average.

saeed_alexy profile image
saeed_alexy in reply toGP24

thank you my friend

i afraid of lung metastases that can reduce the average survival rate

and i know my father has stressful summer and that was the cause and PSA raise for 6 month from 3 to 50

im going to reduce the stress and waiting for hormone trophy response and also miracle ...

Magnus1964 profile image
Magnus1964 in reply tosaeed_alexy

I had a PSA of 130, Zytiga + prednisone took it down to 8 quickly. A good ADT therapy followed be taxotere could give your Dad some time. Who knows how much, could be years.

saeed_alexy profile image
saeed_alexy in reply toMagnus1964

Thank you my friend

and when you understand you have cancer and what is the galsson number?

i really want to know and planning to make lovely better life for my father and i know its not possible to masseur the exact time but i read some where its about 1 year some article says its about 2.5 year and somebody said it can be 5 or more

but may be there is average rate or similar patient

Magnus1964 profile image
Magnus1964 in reply tosaeed_alexy

My Gleason score is 9 and I have survived for 27 years. However, everyone responds differently to treatments. There is a lot more out there for prostate cancer patients then when I was diagnosed.

If all of the cancer is in his soft tissues maybe Provenge is the way to go.

saeed_alexy profile image
saeed_alexy in reply toMagnus1964

i wish you live for extra 100 years

know im more hop full

Db999 profile image
Db999 in reply toMagnus1964

Wow . You’ve had PC 27 years!! Thats so inspiring

Tommyj2 profile image
Tommyj2 in reply toMagnus1964

Impressive ...you've certainly defied the odds. Are you still being treated?? What is your current protocol? Has it been changed numerous times or have you been" simply " _ lucky?

Magnus1964 profile image
Magnus1964 in reply toTommyj2

I am still being treated. I have gone through surgery, radiation, casodex, a dozen supplements, DCA, Zytiga + prednisone (drug trial), and right now I am on my second drug trial with Xtandi + a mystery drug from Eli Lilley. It has been my experience that Pca find a work-around to treatments be they conventional or alternative. When one fail you move on to next.

Daddyishealing profile image
Daddyishealing in reply tosaeed_alexy

Google stats are not updated as to recent drugs and drug treatments. Listen to patients not google and unles that search says your dads name and that he will live such snd such, its garbage, old stats.

GP24 profile image
GP24

The hormone therapy will reduce the PSA value a lot.

I know a patient who's lung metastases showed a remission after Chemo.

whatsinaname profile image
whatsinaname in reply toGP24

On the other hand, hormone therapy has done ZILCH for me, thus far.

Docetaxel was also an abject failure. Radiation therapy was a dismal failure.

Now, lets see what Lu-177 turns out to be. My first infusion is 3 days from now.

I am hopeful but not ecstatic.

Cheers !!

GP24 profile image
GP24 in reply towhatsinaname

I am sorry that these treatments did not work for you.

Most patients see a big reduction in their PSA value. Hormone therapy will stop the cancer to progress for these patients. This until the patient becomes resistant to this therapy. Chemo has shown in recent trials to extend survival when combined with hormone therapy for newly diagnosed patients with a lot of metastases.

whatsinaname profile image
whatsinaname in reply toGP24

I merely repeated what I have said before on this board about the ineffectiveness of the above treatments FOR ME. It might work for some or even a lot of prostate cancer patients. But, it certainly DID NOT work for me. Others, who are starting these treatments should be aware of this.

GP24 profile image
GP24 in reply towhatsinaname

I just wanted to avoid that saeed_alexy gets the impression hormone therapy is likely not to work. From what I know it is rare that it does not work, it may not work for a long time for some patients, but it usually will work well.

whatsinaname profile image
whatsinaname in reply toGP24

I am sorry, I disagree. IF, the hormone treatments do not work well for the first few months, they are hardly likely to work for a few years.

Besides, when one's PSA is soaring and one's mets are increasing in size and qty, why would one want to continue a FAILED therapy in the hope that they may some day work ?? :-)

Also, I believe in being completely honest with the patient.

GP24 profile image
GP24 in reply towhatsinaname

If I understand the orginal post by saeed_alexy correctly, his dad just got his first injection. So you can still expect that the hormone therapy does work for him.

"had 6 mount to 30 and my little sister want to mirage" = in six months I will be 30 years old and my sister plans her marriage.

whatsinaname profile image
whatsinaname in reply toGP24

What does his turning 30 or his sister wanting to get married, have anything to do with what I said ?? :-)

If his dad responds favorably to hormone therapy, I will be very happy for Saeed Alexy. I can see that he is very concerned. But, I have to state categorically that hormone therapy DOES NOT work for EVERYONE. For most, quite possibly, not for all.

Cheers !!!

Tommyj2 profile image
Tommyj2 in reply towhatsinaname

I'm really sorry that what has worked for so many has not worked for you.... There is little question that you are correct... one can NOT be assured of Tx success which is why I always prefer to couch matters in " odds " of success

leaving a little in reserve for the occasional " miracle " which ( while irrational on the face of it) is often what gets people through.... On balance it's probably better to keep ones thoughts on the possible even moreso than the probable to keep depression at bay... I often wish I could follow my own advice : )

whatsinaname profile image
whatsinaname in reply toTommyj2

Thank you, Tommyj2.

If one is "rational", then expecting "miracles" to happen is out of the question.

Also, "depression" usually happens only to those whose expectations are too high and are brought down to earth with a huge thud. Managing "expectations" is key to avoiding "depression", imho.

Excellent point you made, Tommyj2.

Cheers and all the very best.

monte1111 profile image
monte1111 in reply toGP24

Thanks. My lupron brain was going "huh?"

NPfisherman profile image
NPfisherman in reply towhatsinaname

Hope this works extremely well for you, brother...Good luck....

Fish

whatsinaname profile image
whatsinaname in reply toNPfisherman

Thank you, Fish.

As I said, I am hopeful but not ecstatic :-)

Cheers !!

Sxrxrnr1 profile image
Sxrxrnr1 in reply towhatsinaname

I am likely in an LU 177 trial soon. Hoping it works well very for you. Looking forward to seeing your progress reports. I too am failing a number of therapies.

Perhaps we need a category divided by therapy for these new therapies,,,immune, 2nd gen ar’s, Lu 177 etc.

whatsinaname profile image
whatsinaname in reply toSxrxrnr1

I will report back as to how Lu-177 went off for me. The infusion date is Tuesday the 23rd of April. I am keeping my fingers crossed :-)

Sxrxrnr profile image
Sxrxrnr in reply towhatsinaname

Where are you being given Lu 177? Are you enrolled in a trial? I was just proposed a slot in a trial?,,,,howeverrrrrr, only 2 out each 3 enrollees will receive Lu177,,,the rest get nothing but SOC,,,,which most volunteers are already failing or believe will soon be. Was told they are not signing up enough volunteer as rapidly as they would like!!!!

whatsinaname profile image
whatsinaname in reply toSxrxrnr

I am an Indian residing in Bombay, now called Mumbai. I am getting my Lu-177 treatment done at Jaslok Hospital, Bombay. I am paying for the treatment entirely out of pocket, which should be in the region of Rs 1 million or thereabouts or approx 14300 US$. The treatment involves an injection infusion every 60 days. A total of 3 injections. The raw material is being 100% imported from Germany.

Insurance does not cover Lu-177 as it is not yet considered SOC (standard of care) here in Bombay. In any case, I do not have insurance.

Cheers, Sxrxrnr !!!

Jbooml profile image
Jbooml in reply towhatsinaname

I’m betting on a good result Carlos....have you examined the veracity of the infusion they’re about to administer. It’s quite an exotic brew not to mention the expense where one would hope they deliver what’s promised....can you bring along a Geiger counter?

You and I have some things in common...ie no crushing pain from our Mets..but alas as I recall you have soft tissue involvement?

I was going to add that if your burden is mostly boney...before you take the Lulu have you thought about Ra223...what’s it called xagiva?

I think it’s good for non lytic bone Mets from my cursory understanding.

whatsinaname profile image
whatsinaname in reply toJbooml

Yes, I have a met in the left lung. Otherwise, the mets are mainly in the bones.

Thanks for your good wishes, Jeff. I am hoping for the best.

Cheers !!

Jbooml profile image
Jbooml in reply towhatsinaname

Somethings got to work.....and your PSMA Avidity must mean something.....still haven’t hit on the lottery.....but I’ve got a hot stock in the blood biopsy horserace that I’m hoping is good for a show...at least. Haven’t booked our tickets to Delhi yet....waiting for the 737 MAX aftermath to simmer down....it caused us havoc in scheduling flights to Vancouver to see my Medonc....gave up and started seeing a local woman for bloodraws etc.

We’re all Widshing you the very very best.

Jeff

whatsinaname profile image
whatsinaname in reply toJbooml

Thank you again for the good wishes, Jeff.

All the very best to you too.

in reply towhatsinaname

Mind if I ask where you are getting your treatment? Just wondering when one treatment doesn’t help if they are right on to the new one. Big hospital or local team?

whatsinaname profile image
whatsinaname in reply to

I am an Indian living in Bombay. I am getting ALL my cancer treatments done in Bombay. I believe that it is as effective as going abroad for treatment and definitely much cheaper and more convenient.

Yes, when one treatment fails, they (my local team) are usually able to suggest the next line of treatment right away. That is because we try to have a Plan B and Plan C waiting to be used.

Btw, my name is Carlos, fairly unusual name for an Indian, wouldn't you say ?? :-)

Cheers, carlo8686.

Carlos de Souza.

28th April, 2019

08.02 IST Bombay.

in reply towhatsinaname

That’s great Carlos. I’m sure you are better off in Bombay than the states. The reason I asked about the timing on treatments is there have been no conversations about future for me. I’m sure there will be one but I have not had one appointment since I was diagnosed that lasted more than 15 minutes. I hope they know what they are doing. The drugs are keeping the psa down and just finished 39 rounds of radiation. I’m at the wait and see point in my treatment. Never liked waiting on anything. Good luck with yours.

Mike

whatsinaname profile image
whatsinaname in reply to

So sorry to hear this, Mike. The next meeting with my MO is on Tuesday, 30th April and I am quite certain that it will last for at least 60 minutes. I pay just US$ 20/-

I have to discuss my genome mapping results from Foundation One with my MO along with how my infusion with Lu-177 went. I am sure she will be very excited to know that the Lu-177 infusion went off very well. We will chart out together the probable courses of action for the immediate future. And, if she comes up short somewhere (which is possible), I have another 2 MO's lined up whom I can consult with. No insurance involved. I pay for everything. Fortunately, this is India, where things are not a complete bloody rip-off.

I too dislike uncertainty, but one has to deal with it all the time.

All the very best, Mike.

ctarleton profile image
ctarleton

Other information:

cancer.gov/types/prostate/r...

translate.google.com/transl...

saeed_alexy profile image
saeed_alexy in reply toctarleton

thanks a lot my friend

Walkingwell profile image
Walkingwell

It's normal to ask survival time (I did!) but nobody knows the real answer. Everybody is different but your father can help his chances by exercise (as NPfisherman says), good diet, information, prayer or positivity and purpose, good support from family and friends. Doctors will help but he (and you) can help most.

elvismlv123 profile image
elvismlv123

No one can say how long any of us will live.

Prostate cancer is one the least cancers to worry about. Generally it is slow growing and one of the first places it goes to is the bones.

First he must be on hormone treatment with Lupron and casodex to drive down his PSA which means the lesions will go away. If not that there are drugs that will shrink metastasis in the body. At his age the cancer shows up and same with me. This age is like a standard and not concerning. He is a young man in the scheme of things. I dont like the coughing as it suggests other things going on but with the drugs it might go away.

Eat nutritious foods as much as possible with pomegranate,spinach and good water to help. Add Vitamin C , D3, Vitamin E and curcumin and others that you can find on the Internet. These all help.

One thing is dont relay to Dad any fear and show courage that it will be ok.

Fear is worst than the cancer. Many men dont find a cure and live many,many good years.

Some day they will but it can be unnecessary if you follow what survivors do. I am 15 years after DX and I am ok.

saeed_alexy profile image
saeed_alexy in reply toelvismlv123

thanks god you are ok we in technological world maybe they found cure in future

TommyTV profile image
TommyTV

Just to add to others..

My diagnosis was PSA at 571, multiple bone Mets. I’m still here and doing well nearly 8 years later. All of us asked the question “how long have I got?”. It’s unanswerable as new treatments come along and keep extending our lives. Don’t let cancer control you, you control the cancer. Put it into a cupboard in your mind, and bring it out from time to time at hospital visits, then put it away again. Stay positive. Exercise if he can, eat a healthy diet, no stress and live a happy life.

Godschild62 profile image
Godschild62

I am so sorry to hear about your father. He's blessed with a wonderful child who loves him dearly.

No one knows how much time the treatment will last. Many of these men are very blessed. My husband passed away almost 4 months ago after 21 months of multiple treatment plans. My husband's cancer also spread to his lungs only 4 months AFTER completing docetaxel. Each treatment on average "should" last for approximately 2 years before the cancer mutates and you need another treatment plan. Everyone is different-my husband exhausted 4 in 21 months.

I will pray for you and your family. Try and be strong- only God knows when our time here on earth is complete. There are many people who are living years later after the doctors predictions. One day, one moment at a time. Try to enjoy each day as hard as it might be right now. Worrying cannot change your situation and will rob you of your joy with the precious time you have with your dad. You can never get time back.

God bless you!

saeed_alexy profile image
saeed_alexy in reply toGodschild62

God bless you too my dear friend...

thank you so much for your hope

larry_dammit profile image
larry_dammit

Hate to hear the monster is fighting another brother. I was diagnosed with Stage 4 and Mets in spine,ribs and lymph, that was 33 months ago. When I pressed my doctor about survival he tried to dodge the question as well. After pressing him he said the norm was a 50-50 chance of 5 years. I’m still feeling good so who knows. Don’t give up hope. 🙏🙏

dadzone43 profile image
dadzone43

A'salaam aleicham. (Sorry I do not know the Farsi equivalent.) Yours is a sad story for so many reasons. Medical, social and political. There is always hope.

saeed_alexy profile image
saeed_alexy in reply todadzone43

a salaam aleicham too

thanks a lot my friend

we can just vote for some leader who do not want war between country

Iran and my historical city Isfahan are the most amazing place for tourists and our people never wants any body dead ...

im sorry for the world leader too

cost of treatment in Iran raise about 400% and it makes or hard days harder and harder

saeed_alexy profile image
saeed_alexy

thank you so much for your hope

keep going my friend

the doctor says to me to have Psa check for my self every 6 mount when i going over 40

leo2634 profile image
leo2634

Ask about Zytiga its now in a generic form so costs to you should be beneficial.

saeed_alexy profile image
saeed_alexy in reply toleo2634

i asked for it we can find it so hard and it cost about 7 time more than my salary in month

but i should keep going and use my friend help in Iran

dadzone43 profile image
dadzone43

the leaders do not suffer (here or in Iran) but the people do.

Stegosaurus37 profile image
Stegosaurus37

As has been said, no one knows how long any of us has. I have been "written off" by 2 different sets of oncologists and am still going on fairly strong. Besides what others have suggested, I have been taking ginseng to combat the cancer-related fatigue (fatigue is a common side effect of cancer therapies) and it's been working. Our thoughts and prayers are with you and your father.

monte1111 profile image
monte1111 in reply toStegosaurus37

I think I should look into that Wisconsin Ginseng. Weening off of prednisone after two years and really feeling it.

MichaelDD profile image
MichaelDD

Docetaxel if you have that available. Mentioned above it is a good option. I have lung metastasis. Currently I am on Zytiga. Docetaxel is in line for my next options when Zytiga is no longer working. Best to you and your family.

saeed_alexy profile image
saeed_alexy in reply toMichaelDD

god bless you Micheal

and what is your psa history?

and how much time you start treating?

monte1111 profile image
monte1111

Good morning sir. I have extensive bone mets and abdominal lymph node mets (resolved for now?). Still here after 2 years and doing just fine. Was given one and a half to two and a half years. Later changed to many years. The doctors usually don't know, especially at the beginning, and the new drugs are changing the statistics. The first thing we all did was google the statistics. We find out later that that is really not so helpful. Your doctor was being honest and truthful. He doesn't know. I think that with hormone treatment, if the lung mets shrink, then that is pretty much proof that is metastatic to the lungs. I have no knowledge on that subject and maybe others here can help you with that. I have two Iranian/American friends. Girls, sisters, very beautiful. We all hope, that someday, all the hateful people in the world, will just fade away.

Sunlight12 profile image
Sunlight12

I'm new to this journey (my Dad was diagnosed a couple months ago). Positivity is so important - try to keep your outlook happy so you can support your Dad. J_o_h_n on this forum told me on my first post to keep my Dad laughing, so I'm passing on that excellent advice to you. Fight as hard as you can, get rid of the stress as much as you can and try to do something each day that makes your Dad happy (and you too!).

My very best wishes to you, your Dad and your family!

In solidarity,

Sunlight

j-o-h-n profile image
j-o-h-n

English to Persian using Google translate:

Tall_Allen

posted:

Docetaxel, used early, is a good thing to consider. It is available as a generic drug. You will have to see how well he responds to it.

Docetaxel، مورد استفاده در اوایل، چیز خوبی است که باید در نظر بگیریم. این دارو به عنوان یک داروی عمومی در دسترس است. شما باید ببینید که چگونه به آن پاسخ می دهد

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/19/2019 6:32 PM DST

Daddyishealing profile image
Daddyishealing

Please read my bio because it answers that. Any hope..hell yeah!! I have talked to men on her 4, 6, 10,years post diagnosis. Noone knows how long but my dads psa was higher and well over 100 mets through bones. Lupron and exgeva and zytiga are helping him. No progression of cancer. Also he had spot in lung over a year before diagnosis and trratment. The field is advancing and more drugs will come out. Read my bio. I reacted exactly as you have when diagnosed. Yes there is hope.hugs.

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