Does anyone have Pattern Tertiary 5 PC?
What have been your experiences with it?
My 50 year old son was recently diagnosed with 4+3=7 tertiary pattern 5. From what I’ve read it’s more difficult than just 4+3 = 7.
I would appreciate any feedback you can give me as he’s only about seven months into this. He’s had a robotic prostatectomy, and he’s presently taking Lupron, Zytiga and prednisone, and Monday will be his last day of 6 weeks of IMRT.
Thank you very much for any input you can give me.
It looks like you are on the right path. I am not a doctor, but I am an 18 year survivor of Prostate Cancer, and an Advocate for a Cancer hospital.
I have been on Lupron, and Predinose, (can't remember if I had Zytiga).
Lupron has been replaced with Orgovyx. Check out the description of Orgovyx. It is said to have less severe side effects than Lupron. you may
feel "hot flashes", have flushing of cheeks, and other side effects.
Testosterone levels, and PSA levels should go down 6 to 8 weeks after starting on the Lupron, or Orgovyx. My PSA got down to 0.008.
My son (not me) is 50 and he was diagnosed with the PC just before his 50th birthday August 2022. He had a robotic RP October 24 and in two months he took his first PSA test and it had climbed from 4 to 20!
A PSMA pet scan showed that he had small amounts of cancer in two pelvic areas. They gave him a Firmagon injection, but he had a very painful reaction so they switched him to Lupron injection every 3 months and they also put him on Zytiga and prednisone and then he started six weeks of IMRT radiation, and just finished that this morning.
We now have to wait three months to have his first follow up PSA test done. I am hoping that the radiation killed the very small amounts of PC that had escaped to the pelvic area but he is still going to have to take the Lupron every three months and the Zytiga and prednisone daily.
Thank you for telling me about the Orgovyx and I will read up on it and tell him about it.
Has the Tertiary 5 caused you a lot of problems during the time that you’ve had PC?
More specifically what part of the problems in your treatment program has the tertiary 5 caused?
I am trying to figure out just what lies ahead for him and how much of a problem this tertiary 5 is going to be and all that’s online are technical studies like NIH etc. etc! Not much written by laymen who have had to personally deal with it
Congratulations on being an 18 year survivor of this terrible disease and an Advocate. That ‘s a true accomplishment because 18 years ago the treatments were not anywhere near as good as today.
Thank you very much for writing back, and for any more input or insight you can give me on tertiary 5. I really appreciate it.
Tertiary 5 is a relatively new term, it simply means that there is a third type of cancer configuration that is over 5% of the total.
In 2004, when I was diagnosed, the median LIFETIME of survival was 30 MONTHS. Much has changed, even my Doctor does not know WHY I am still alive. She wants to do an autopsy, if and when I die.
She will not find the answer in the tissues of my body; she will have to look into my Heart...for faith in God. Believe in THE Healer.
Monitor PSA frequently, Pray, and live life.
Veteran Survivor
Thank you explaining tertiary 5 and for the wise words and advice.
I just have one other question.
I looked up Orgovyx and it’s a brand new drug approved 2021 with no generic and it’s about $2600 for a 30 day supply! I don’t think generics come out for about 20 years after a drug is released. I don’t know who could afford that much per month, or if insurance companies would pay for it as they would like you in most cases to choose generics. 🤷🏻♀️
So how are PC patients changing to Orgovyx unless they’re very rich or maybe in a trial?! It just doesn’t seem feasible unless doctors have a way to obtain it from the Pharmaceutical Company for an affordable price for the patient?
Thank you again. I appreciate your help.
PS The reason I am so anxious to find as much as I can about Tertiary 5 is that it’s linked with a higher rate of biochemical reoccurrence and therefore more dangerous and I think more difficult to successfully treat.
I am 75 years old, have been on Medicare for 10 years with Blue Cross as secondary insurance. I worked for a major manufacturer, and they wanted to take away retirees Medical insurance. I had 30 years credited service, so I retired, and the company continues to pay for my insurance.
Sometimes, Makers of drugs will respond to "I can't afford it" and give you a break. I have not had to, but Karmanos is doing a research study on the financial burden of Cancer. Check with your Doctor, Hospital and the Hospital's Social Worker.
Perhaps, I can check with the researcher to see what suggestions she has.
So you know the price of Lupron? Check to see if there is a Clinical Trial
that your son can get into. Is your son able to work? If not is there a Disabilty program (work, insurance or Medicare) that your son can qualify for? Perhaps do some on-line research for aid with Medical costs.
Veteran Survivor
It’s great that your prescription benefits were kept but terrible your RX benefits were threatened if you didn’t retire early.
As far as I know my son’s medical covers his Lupron. To date he has very good company coverage. I belong to a number of support groups and many patients are either on Lupron or Firmagon. My son experienced a painful reaction to Firmagon so he can’t take that injection. He tolerates Lupron well and is also taking Zytiga and prednisone and just finished 6 weeks of radiation on Monday. Now we have to wait three months for his first PSA. As far as I know his doctors haven’t yet mentioned Orgovyx, but I thank you for the information and if we get into a financial bind over it it’s great to have you to contact. We had thought my son’s robotic surgery would be a once and done. His initial numbers were 3+3 = 6 and 3+4 = 7, but when he went for his two month PSA post robotic surgery check up his score went from 4 to 20! Not 2 but 20! They then performed a PSMA pet scan, which is the only scan that showed that he had some spread to the pelvic lymph nodes and that’s why he had the radiation as he is class 3 high-risk with th tertiary 5 pattern. His medical team hit it hard with all the medicines and radiation. So now it’s just waiting and there seems to be a lot of waiting in PC. Eventually they will be using PSMA pet scan to determine treatment but we missed that boat because it wasn’t performed till after his Gleason score went up to 20 post surgery. He went to four doctors and they all recommended surgery. I don’t think he would’ve been a candidate for surgery had we known what we know now. I am hoping they got it all with the radiation but it’s a sneaky mean disease as we all know.
Thank you for all your help and I will keep your advice in mind on Orgovyx for the future. I appreciate it. My son was diagnosed last August just before his 50th birthday so this has really been a blitz introduction to everything you wish you didn’t have to know about PC.
Thanks again.
Cactus297
Ask your doctor if there is a more affordable, AND effective drug appropriate for your son.
Veteran Survivor
Thanks I forgot to mention that he’s only been on Lupron and Zytiga since December so there hasn’t been enough time to know if it’s working or not. His PSA will be checked in three months because the radiation (IMRT) ended on Monday. (I think they stop working if you become hormone resistant?) Maybe Orgovyx doesn’t stop working like the older ADT’s?
Still working on my knowledge of how long these meds work and what are the alternatives if they do stop working. I am hoping that this treatment that he’s receiving will get rid of the PC….it’s feasible.
There is one more possible step after radiation and that is chemo. They are using Taxotere as the following step to cure the cancer when applicable . I don’t know if he’ll need it or be a candidate for it at the end of the three months though. Will have to wait and see.
Thanks again.
Get chemotherapy Taxotere as soon as possible it was only 90 dollars in Australia and find an experienced nurse to inject Firmagon. After stopping firmagon his testosterone will renounce back to normal when he healsb from cancer. Firmagon is even better than orgovix. They just don't know how to inject it.
I don’t think he will go back to Firmagon because the experience was so painful. His present doctor won’t do Taxotere unless he sees spread. But my son is changing to the Mayo Clinic soon because of his job so I will run it by him for when he sees his doctor there. I agree with you that I think the Firmagon wasn’t injected properly. He’s also had 6 weeks of IMRT radiation and his PSA dropped to .07. He will be having a follow up PSA test soon and we’re hoping it will stay low. Thanks for the advice.
I am really happy with firmagon myself but my first MO thought it is too new and therefore not enough experience with it.
You know doctors historically always prefer to prescribe old and proven drugs instead of experimenting with patients with new drugs. Firmagon is not very new by now but still it is not around for more than 30 years.
They told my son he had a bad reaction to the Firmagon because his injection pain was worse than the surgery pain but the person who injected may not have had the technique down. So they switched my son to Lupron and so far he’s doing well tolerating it. Due to a job change he’s going to changing over to the Mayo soon so it will be interesting to see how they treat the PC.
Firmagon is superior in every respect except in years of experience.
Find an experienced nurse and injection pain will be negligible.
I myself didn't care about pain, only about the effect.
How is your son doing?
Veteran Survivor
He went for his 3 month check up and his PSA had remained the same <0.10 and he said all the other results were okay ( no specifics given) so he’s still on generic Zytiga, prednisone and Lupron. He told me he has plans to work with a trainer and he’s still doing some hiking. He’s also going to see a nutritionist about his diet. He’s been very busy the past couple of weeks so he’s been very tired and it’s hard to know what is the medicine and what is just working real hard. Otherwise, he seems to be OK. Thanks for asking!
How are you doing?
