Hi everyone, I've been a lurker here for quite a while so I figured it was time to share my father's journey into this horrible disease.
Dad is 65y old and was diagnosed in April 2017 with Gleason 9, a PSA 95 and regional lymph nodes involved.
First Bone Scintigraphy in May 2017 showed no mets at the bones.
His urologist insisted on surgery anyway and claimed we were at the absolute limits for it and that without it dad would've had 6 months left at the very most, after that ADT was a must to control the monster.
Dad's PSA before surgery was up to 138, he had it in June 2017 and everything went very well (non robotic one because a bit complicated according to the urologist).
The pathological report stated it was actually a Gleason 7 and not a 9 like the biopsy said, positive margins but microscopic, stage T3b.
Then two months after we had the devastating news, it was August 2017 and dad's PSA climbed to 300+, both him and the urologist couldn't believe the cancer had escaped the prostate and spread so quickly so at that point Lupron and Casodex were a must and so was finding both an oncologist and a radiotherapist.
Dad's PSA dropped to 14 in September 2017, so the Lupron and Casodex did their job extremely well and in a very short time period too.
Pet scan in October 2017 showed several lymph nodes (I think 4 or 5) over his body affected and enlarged.
So he was actually stage 4 sadly and the surgery failed, but still up to today, both the urologist and even his oncologists (he has 2 that work together in the same room) insist that it did in fact help to remove the prostate and a lot.
It was like attacking the main base of an army and preventing the soldiers from using supplies and fuel.
Dad's oncologists wanted to combine the ADT with 6 sessions of chemo with Docetaxel to make the treatment even more effective, all of that that lowered his PSA to 5.75 in January 2018.
To my big surprise he actually tolerated the chemo very well and didn't lose weight or anything, the side effects were just minor annoyances.
Then both ADT and chemo stopped working after 6 months.
We went again for a PET Scan at the end of March 2018, that actually despite the PSA increase to 7.58 showed a huge improvement, the disappearance of every lymph node except one that actually shrunk in size by 50%, there was also a suspicious bone lesion but his radiotherapist was 100% sure it's a hernia and not cancer.
So here we are in May 2018, Casodex and Docetaxel failed both after 6 months but the oncologists say we still have various possibilities so they put my father on Abiraterone 20 days ago, hopefully this will last.
He still takes Lupron injections every 3 months and cortison.
Last PSA before taking Abiraterone was up to 15.5 and that was 20 days ago, now we are waiting to see if this treatment is effective and keeps this monster at bay.
The oncologist thinks dad is still hormone naive in some way so wants to try every sort of treatment and some sort of radiotherapy in vein too (never heard of that).
Our options for the future are Xtandi, Jevtana, Immunoterapy with Provenge, this radiotherapy in vein and a few other experimental drugs.
My father is perfectly healthy for his age and doesn't have any other medical conditions, also eats very well (mostly vegetables and avoids red meat, dairy and sugar) and has a quite optimistic mindset.
The other good news is that here in Italy everything is covered by the government so we don't have to pay for the treatments. Abiraterone costs as much as 6000 euros without insurance.
Sorry for the long post and thanks for reading.
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Dalph87
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I love your long post. 🌷 You’ll get a lot of help and support here. There seems to be a lot of us daughters here in this same boat. I had a little meltdown the other night, so all the prayers propped me up to get through another day. I’ll pray for you and your Dad. And everyone else tonight.
Thank you so much dadeb and you are completely right about this place, it's a wonderful community. I read some of your posts, please don't be so hard on yourself.
You are a wonderful daughter for doing what you have been doing all this while and I'm sure your father is very proud of you, I hope things will get better for the both of you.
That being said, he's an amazing fighter for being able to kick that despicable thing in the butt for so long.
You and your father will be in my thoughts and prayers. Sending positive vibes to both.
I don’t know how I missed this. Thanks for your reply and for the positive vibes. Backatcha. Glad you’re posting here. It’s enlightening to see what happens in Italy with Pca. I have a brother close by but pretty much a no-show. Hope you’re getting support from your siblings.
No need for apology ! I am glad to add your precious dad to a list of wonderful men (and caretakers/partners/spouses) who I hold close in my heart. You will find this forum to be ever so supportive and informative ! Sorry about the circumstances that brought you here. There IS hope !
Thank you for the informative Post. That possible future treatment option involving a radiotherapy infusion into a vein may be Xofigo ( (radium-223 dichloride). Hopefully, the consideration of its use may be far in the future.
Here's a recent Italian/European caution concerning its usage at the same time as Zytiga.
This link to Clinical Trials for Prostate Cancer in Italy might also prove helpful in finding the best treatment locations, doctors, new drugs in development for prostate cancer, etc.
I should be the one thanking you ctarleton for your precious posts, so thank you very much for that! I will be sure to inform dad's oncologists about it but I thought that Xofigo was effective only on the bones? I'm not sure if dad can have it since he doesn't seem to have any bone mets thankfully, only one lymph node currently.
I did tell the oncologist something similar but he said that the histologic exam is more accurate than the biopsy since they examined the whole thing and not just a piece of it.
The histologic exam states the following: Prostatic Adenocarcinoma Acinar of grade 7 (4+3) Gleason combined. Perineum infiltration present, both seminal vescicles involved, positive margins. Pathological Stage: T3b.
I did consider Lu-177 and will mention the gene mutation mapping as well, thanks a lot for the precious info.
Lu177 seems to be available here in Italy under the name Luthatera, will ask the oncologist about it. Today we are also getting his first PSA results to see how is Zytiga working after 16 days of use.
My brother who is a pathologist in the US cautioned me about taking the PSA too soon, i.e less than three months, after the start of Abi. It seems that if it is effective and kills the malignant cells the wretched buggers, pardon my Italian, spill a lot of PSA into the blood stream, and cause a false temporary rise. I am sure your Onc knows best. Never mind, I hope it comes down. Both you and your dad need a good break. Please give dad a many hand shake from me in India!!
You are right regarding taking the PSA test too soon on Zytiga but the oncologist said that the best way to know is to use it anyway for at least 3 months (even if the PSA will bounce up and down which might happen). Only time will tell at this point, we will 100% know at the end of August.
I have two grown daughters and it was hard telling them I had stage IV PCa that had become recurrent because I didn't want to burden them. I did tell them though because families share the truth, both good and bad.... whether son or daughter. They support each other and allow others to help when and if they can.
I don't know your dad but i am sure that he is very happy to have you around to be with him through these trialing times. Your love for him is clear. Try to enjoy the moments you have together. We often get too wrapped up in the treatments, diagnosis, prognosis, next best test, etc. and we miss the time we spend together.
Your dad will likely be around for a long while to come, so enjoy that time. Have fun, do things together and have fun being active while he has that energy. Don't forget to live your life too. You need those breaks.
Dad's PSA dropped from 15.5 to just 3 in only 2 weeks of treatment with Zytiga, oncologists are both happy and claim it would take up to 3 months for this drug to show its real effectiveness but the results are already very encouraging and the outlook is positive.
Blood test is excellent too, the drug is well tolerated with only minimal side effects (diarrhea mostly) and everything seems to be 100% under control.
Hope to have a long response from this one but we are all positive.
Next appointment is June 20th for next PSA check (which will hopefully be 0) and discussion about lu177 for the future.
Great to hear this news. l had 2 good years before Zytiga quit working. l look back and cherish those years. I wish I had known then just how precious they were. You've been given a gift.
I am in the high Gleason prostate cancer battle as well, 17 years into it. Smart doctors and new meds will extend life a long time.
Many doctors told me that anything good for the heart is good for fighting cancer. Anything you do for healthy heart will give you another edge on the fight, diet, mild exercise, cholesterol control, no smoking.
Always be proactive to keep in mind future treatments so things will not run amuck too long after a failure of a current therapy.
When Zytiga fails, search for trials combining drugs, such as XTANDI (if available there) with immune therapy. Combined is always many time more effective than mono-therapy. Somebody mentioned Radium 223 and another drug lu177. Perhaps there is a combined therapy trial with one of those drugs when he reaches the point where bones are involved.
Another doctor told me that if radiation is considered for future for painful spots that pop up, consider surgery if possible before resorting to radiation. Find a surgical oncologist. Those people are hard to find and have 3 month lead times for an appointment. There are very few of them where I live in Northern California. I dont know if there are any where you live. Unfortunately, I used too much radiation on my spots and now my combined side effects from radiation makes it almost impossible to do any more radiation. I just added another doctor to my team at Stanford who does non-radiation method "focused ultrasound", so I am prepared for new spots.
As a fellow warrior, I hope my experience helps enlighten your journey.
Yes, we have a plan of combined therapies for the future and Lu177 seems to be more appropriate for him since he has lymph nodes and no bone mets. It is available here under the name of Lutathera, he will go for a genetic mutation map soon (it's called PET PSMA here) so we will know what targeted drugs to use.
We have a few surgical oncologists here but I will have to look into it more in depth and find someone that deals with this disease.
Thanks a lot for your helpful post and good bless you, keep on fighting the beast for more years.
I am so impressed, and glad for your dad that you are giving so much care for him. I unfortunately have no daughters. I write this post only to caution you not to expect a miracle. My Abiraterone only lowered my PSA from 11,8 to 4,6 after three months. A mere declivity, and not an Italian alpine precipice. Some on this site have reported a dive from 100s to 0,0XX. My Onc thought it was still good, as it reversed the increasing tendency and actually brought it down. So I am with Miss Abi again. I must see the Onc again with a PSA on 23rd June. Your dad has youth on his side (Today approaching 78, I think anything under 70 is mere youth!)
I don't expect miracles of course and I know his situation is advanced but I wouldn't even say critical at the same time, after more than one year of diagnosis and surgery he doesn't have any bone mets yet and pretty much all his 5 lymph nodes shrunk.
Even if he can get anything between 3 months to 1 year of benefit with Zytiga (and the oncologist says he probably can) that's all a plus and a bit of peace of mind for the both of us.
People are different and react differently to different drugs, what might work for you might not work for someone else, the only way to know is to try.
We already have options for the future, we are prepared.
Xtandi, Lu177, Jevtana, Xofigo, Xgeva and radiotherapy (if bones will be affected), Immunoterapy with Provenge, clinical trials and Proxalutamide (if it will be available soon), doctor also wants to try Docetaxel again to reverse the effects of Zytiga and Xtandi when they will both stop working, It also helps that his health his excellent and he is not that old, the oncologist says this helps a lot. So hopefully he can get a few more years from all of this.
I do apologise Dalph 87! It is usually the girls that are so care giving to the father. I just presumed you must be a daughter. My son is somewhat neutral about my Bear Pit fight. Please don't get me wrong!! It is just that I, with no daughters guess a girl would be more involved. In a way it is good. i do not want to cause any great distress to the family when I succumb to this perisher!
to: Dalph87 Saúdos paisano. You are the poster boy for caring sons. You're Dad is fortunate to have such a caring son. Hopefully with your love he will around for many many years.
I know you were born in 1987 but I have dandruff older than you. Ciao.
I can't really say saludos Paisano to you Dalph 87 , because I am not American. But in our fight against the Beast, are there frontiers? I share j-o-h-n 's salutation. I don't have dandruff, but many other pesky nuisances older than a mere 30. I admire you m'Lad.
Latest PSA test done yesterday and it's 2.75, slightly down from 3 while still on Zytiga.
So far the condition is stable, Oncologist said things are looking up and blood test is good too. Dad had some swelling on his right knee and we all thought it was a side effect of the drug, but later turned out to be an unrelated small injury he had in the kitchen and the swelling had already reduced.
Next Step: PET PSMA and Lu177.
Thanks to everyone for reading, keep on fighting and best wishes to everyone!
Still very good fortunately, blood test absolutely perfect, PSA very low (keeps going down), almost reaching the 6th month on Zytiga and Prednisone, alongside the usual Lupron shot every 3 months.
The cancer never reached the bones, it was in a few lymph nodes only.
Current side effects: easy fatigue, hot flashes, slight weight gain.
Other than that, my father looks completely fine and is very active.
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