Results of my dads biopsy and genetic testing have come back. Biopsy taken from posterior lymph confirmed cancer, metastasized to 5 lymphs retroperitoneal and 2 early bone mets. INVATAE genetic testing showed no mutations but biopsy of lymph tissue is being sent to FOUNDATION ONE. We will be discussing treatment plan with MedOnc tomorrow. His recommendation thus far is: Casodex one week for T-flare, then Lupron and 6 cycles of Docetaxel. I would love to hear what everyone thinks about this plan.........What additional questions should I be prepared to ask about this protocol? The doctor appears to be open minded and is willing to confer with an Oncologist named Paul Monk from THE JAMES at Ohio State University. I'm so grateful to be able to discuss this in advance with all of you.
I had wondered about the same thing. My dad is fearful of the chemo side effects. Many have had success with the Lupron/Zytiga combo. Some are suggesting that chemo be used early on, so that may be the doctor's reasoning........It's all very confusing. I will ask about the Zytiga. Thanks for your input
Lupron,Zytiga was given to me as First line of treatments my PSA has been undetectable after one month. I am on a form of Lupron called Eligard which is a six month injection very little side effects and tolerable. Best of luck and never give up never surrender. Leo
My husband, Stage 4, Gleason 9 with mets has been on daily Zytiga, prednisone and Eligard injections every 3 months. He also had 28 treatments of IMRT radiation. His PSA is undetectable right now. He was diagnosed in November. He’s responded very favorably to everything at this point. His oncologist didn’t want to start him on docetaxel because he said his mets are lower volume; 2 ribs, scapula, lymph nodes and seminal vesicles. He said if it was in the organs, that would be different. So, hopefully, he’ll continue to be castration sensitive to this treatment regimen, at least for a good while.
I have had 13 treatments with Lupron, Docetaxel, Neulastga and Predizone. The side effects are manageable. I would ask about other options that are available.
One thing we found out is that the Chemo can cause you a higher risk of getting blood clots which I ended of getting, which landed me in the hospital over night with Pulmonary embolism, I now take a blood thinner to manage this problem, the drug I take for this is Eliquis. Originally the doctors at the hospital put me on a shot every day for this which worked, by my doctor switched me over to Eliquis which also works for Chemo patients.
We are also careful to stay away from the big crowds because of the chance of catching a bug from someone that is sick.
For the Chemo I plan into my schedule a little down time especially after about the 2nd or 3rd day after the treatment because of the fatigue. I am on a Chemo holiday right now for 3 weeks, because I was getting toxic from the Docetaxel. I expect that I will go back on the Chemo in the next few weeks.
One of the findings of the STAMPEDE study was that the degree of side effects were similar with Zytiga or Docetaxel (only different in side effects). I think with his large number of distant mets, docetaxel is a good choice. I think Zytiga would be a good choice too- he can move to Zytiga afterwards.
I was waiting for you to weigh in. I value your opinion and appreciate how you make things very understandable. We just want to make the right choice. Do you think that by not introducing Zytiga initially, one can "buy" more time with ADT........that is.......keeping him more hormonally sensitive?
I think they are both good choices. There is some selective pressure from the combined hormonals, but killing off more cancer cells obviously outweighs that. The issue is more Zytiga resistance than castration resistance. Docetaxel may sometimes reverse Zytiga resistance. My thinking would be... Docetaxel therapy is usually 18 weeks, whereas he would be on Zytiga hopefully a lot longer than that - so he can have both therapies in a briefer time if he does docetaxel first.
Hi. Just to throw in. My MO put me on all 3. Chemo, Zytega and lupron. The thinking being go hard early while the enemy is weak. Makes logical sense since lupron and Zytega early is proven to be better and lupron and chemo early is better, why not all three?
Sounds like a great approach I wish my doc would get more aggressive. But he is still in the old school monotherapy. He waits for one treatment to fail before we start the next but I prefer your approach - hit it hard then hit it again while it's down.
One thing that the Lattitude and Stampede trials showed (and more recently the trial involving early use of Xandi) is that many of these drugs work better the earlier they are given.
Hi, I started on Casodex for 2 weeks, then joined STAMPEDE trial, Zoladex (lupron) every 12 weeks, 1000mg Abiraterone (Zytiga) and 10mg Prednisone daily. Side effects were same as menopause, lasted about 3.5 years. PSA still immeasurable after 6.5 years from dx, PSA @ dx was 571 with 7 major bone mets.
I think the chemo can be pretty debilitating, so save it for later. You can't save this Zytiga regime for later, other than end of life relief. If you look at my earlier post from last week, I posted a chart from last year of the 3 year results of my regime. Fairly impressive.
I must stress my response was a little unusual as my PSA dropped from 571 to immeasurable in the space of 12 weeks, and some men can't take Zytiga at all as it screws their liver function and blood pressure.
That's incredible, TommyTV! What great results. My dad's PSA was 680 a couple of weeks ago. I would love to see similar results with him. Thanks so much for your testimony.
I have two Daughters that compete for the title of Daddy's little girl on a daily basis and that to me is the best medicine of all. My Daughter's are both married with families of their own but still remember the first man they ever loved. Stay strong for your Dad and tell him to join our group of Brothers. Leo
I too am on this site for my father, who I just adore. He started with Lupron and Zytiga but had a terrible allergic reaction causing a severe rash among some other side effects. Psa had gone down to 0.05. Now we are waiting for the rash to clear up, which could still be a few more months but MO wants him to do the chemo now instead. He should be starting in a few weeks. He is very nervous about the side effects but hoping we can help him through it. Best of luck!
Family and my friends are everything to me the never ending support gets me through each day and my Grandkids give me the will to live as long as I can.
I chose Docetaxel first for the reasons that it kills cancer cells and because I could follow it with Zytiga. There are no studies proving the benefit of that particular sequencing, but it makes logical sense. Docetaxel side effects were manageable but much worse for me than Zytiga, but i’m Still glad I chose the way I did.
Thank you Canoehead......I appreciate the reassurance. Seems like a good attack on the lymph and bone mets. Did you do 6 cycles of Docetaxel? How long after did you start Zytiga? Sorry for all of the questions.
I did 6 cycles of Docetaxel. Like most here I felt the worst about 3 days after each infusion. I started at the same time I started ADT. Wish I knew then what I have learned since, dipping hands in ice water during infusions can minimize the peripheral neuropathy, which is my only lasting side effect. Also need a good probiotic during treatment.
I started Zytiga about 2 months after my last infusion.
To my knowledge no one does Docetaxel and Zytiga simultaneously.
I would think chemo would be easier when you’re younger and healthier. Many want to save it for later but later you might be more frail so it would be harder to take. Not sure of your Dad’s age.
Be sure to read up on the precautions such as icing hands and feet, etc.
In my first post, I forgot to tell you about my Zytiga treatment. I did this for 16 months before starting Docetaxel. And shortly before doing Zytiga, I had the 3 Provenge treatments. It worked good, the biggest side effect with it was the fatigue. So I got used to taking a short nap every day. I'd recommend both Docetaxel, Zytiga and Provenge if you can qualify for it, it is fairly expensive.
dlestercarlson-
Wow! You've certainly had some experience! We will discuss these options tomorrow at our doctors appointment. I will share your story with my dad. I appreciate you sharing your personal history. It's helping me make sense of it all.
My oncologist put me on monthly Firmagon. It is an antagonist which means no testosterone flare which you get with the agonists such as Lupron..
T plunged to undetectable in 2 days.
After the first month i went on 6 cycles of docetaxyl. Side effects were minimal and eminently bearable. We put icepacks on hands and feet and sucked icecubes during the chemo infusion to prevent neuropathy. It worked. The day after chemo i got a shot of Neulasta to boost white blood cell production.
I live 4000km from my oncologist. We flew there the day before each chemo and home in the evening of the chemo. All goes well.
That is a significant PSA drop! And I'm so happy that the ice therapy worked in avoiding neuropathy. These are important details that I wouldn't have learned if it weren't for this wonderful group of sharing people, including yourself. I appreciate the advice.
Welcome. Stage 4 here 2 years ago the 8th. My DO did 6 rounds of chemo, followed up with a White blood cell shot the next day, then lupron and Xgeva monthly . Had mets in ribs , spine and lymph nodes. PSA is .005 so far. So it sounds like your DO has a plan . Don’t be afraid to ask questions. The earlier he gets the right treatment the better the chances he will last longer. Fight the good Fight
Forgot to say that when we finished the chemo they put me on Xtandi every day and I am still on a monthly full blood panel , PSA and now a eligard and Xgeva shot
It sounds like you are getting really great results. Why Xtandi over Zytiga after chemo? How are you doing on the Xgeva........many side effects? Thanks so much, Larry.
Well I have to think most of the side affects are from the Xtandi,but not sure, at this point I have had almost every listed side affect from all of the drugs but they are getting better 😜😜😜😜 just like the results of what they are doing for me and my wife ❤️
Apparently, Xtandi is a stronger more effective drug compared to Zytiga. The usual procedure is to take Xtandi after Zytiga fails. My quack too has recommended Xtandi after 12 cycles of Docetaxel.
Here in Canada standard protocol for stage 4 PC is Casodex with Lupron shot then 6 cycles of docetaxel. My husband tolerated the chemo treatments quite well. Unfortunately it was only a few months before it failed and he was prescribed Zytiga with Prednisone. Unfortunately that only lasted 1.5 months before we found out his cancer not only was in his bones, but spread to his lungs as micrometastasis. My husband is now on cabazitaxel with Prednisone. He's responding to this chemo very well. PSA went from 1098 to 124 after the first cycle.
Everybody has different side effects. Don't make your decision based on others side effects. Base it on what you think will work and give your dad the best results. Zytiga made my husband depressed and very ill. Others are great on it. Continue to do your research and do what's best for him.
I'm sorry that your husband had a rough patch. It sounds like we have to be flexible with treatment options.....when something fails, remain open to new ideas. Trial and error I guess. Great results with your husbands PSA! That's very encouraging news. Thank you for your supportive advice. I also send happy thoughts of healing to your husband.
Thank you. It's been a whirlwind. Almost 1 year to the time he was first diagnosed we were told he might only have 2 months to live after the first two treatments failed. We were also told the cabazitaxel only works about 15% of the time in my husband case. He became bedridden, was on high concentration oxygen 4-6 litres in a wheel chair and lost about 45 lbs. It was our scariest and darkest time thus far. God is great, and is allowing this chemo to work. He'll be on it as long as it keeps working and his body can handle it. He goes for his eighth treatment on Tuesday. This disease is a very sneaky disease. Praying that you have the right medical team in place.
Hi Linda - others have commented to you about different types of treatment protocols, so I’ll let them speak specifically to the new treatments like Zytiga, which I have not experienced personally. However, Dr. Monk is my MedOnc, as I’ve already told you, and all I can tell you is he’s one of the most brilliant doctors I’ve ever been around in my life, and he’s kept me on this planet now for 11 years after my diagnosis… So if your doctor is conferring with Dr. Monk, you’re going to get the best information you can get, especially here in central Ohio. Just my opinion, your mileage may vary...
Just a little update from earlier today.......my dads doctor conferred with Dr. Monk and they both agreed with Casodex temporarily then Lupron shot and Docetaxel next Thursday. We believe that they are on the right track and accepted the plan. Xtandi rather than Zytiga recommended for future use. So it's a 'GO' and the journey begins. Thanks for your recommendation of Dr. Monk.
That’s great to hear Linda! The Casodex is to stop the “flash” effect that happens with the Lupron - and the Docetaxel is standard chemo to begin...he should definitely get some help from all of this, although it’s always a bit crazy getting everything rolling...after a time, it’ll be old hat!
If I can offer any help, don’t hesitate to contact me here or via email (douds@ohio.edu)...I wish your Dad nothing but great results!
Thank you for your kindness. Wishing you all the best, too!
tdouds-
Your earlier recommendation of Dr Monk went a long way with us. Interestingly, my dad asks his MedOnc last week.......would you be offended if I were to get a second opinion? Doctor replies......of course not. With who? My dad tells him......Dr. Monk. Well, low and behold....the two are good friends and have agreed to confer! We have an appointment today to hear Dr. Monks recommendations as given to the MedOnc here in Cincinnati. I am grateful for your recommendation of Dr. Monk and I hope that my dad is able to be as successful with his treatment as you have been. I'm sure I'll be talking to you real soon. I'd like to hear about your ongoing care.
I went with the early Docetaxel chemo although at the time Zytiga was not yet approved for early use. One advantage of the chemo is that it goes after the full spectrum of cancer cells, not just the hormone senstive ones. Chemo worked well for me and the side effects were very tolerable. I was still able to do some work and go on trips during chemo. It's only 18 weeks so it does go by quickly. The combination of ADT and chemo got my PSA down from 463 to .19 in around 5 months. I was also pain free during chemo.
Wishing the best for your dad.
in reply to
Gregg57- This is such positive news! I'm with my dad right now and sharing this with him. You've given us some relief! Thanks so much.
Hi, I'm Rich and this is my condition: 52 yold male, diagnosed with Stag 4 , metastatic cancer , T2 vertebrate only. Went on Hormonal treatment immediately with Lupron w/ casod. Discontinued Casod. Had 6 cycles of Taxotere (Docetaxel) . Got a 2nd opinion at Stanford University Medical center with Rad treatment suggested since my only meta cancer was a T2 tumor. Since then, I have had Cyberknife therapy on my T2 and started IMRT therapy for my prostate. Although the chemo was tough, the ADT is no cakewalk either with the fatigue. My original ONCOLOGIST had planned for Xgeva but my new oncologist nixed it. Following up on that.
Sorry to hear of your diagnosis so young. I'm happy treatments are working and you have a great team working on your behalf. I appreciate you sharing your experience.
I have been on HT (Eligard) for 4 years, my PSA started to rise in November, so the oncologist started treating Zytiga and Prednison. Unfortunately it did not work for me for a long time. Just 6 months. I'm now on Docetaxel (taxotere) with Prednison. Tomorrow the third dose. I have a little problem with white blood cells after chemo. I'm getting injections to promote white blood cell production. But we are different and each responds to treatment differently.
Thank you for sharing your experience. I'm learning so much from ones like you willing to offer support and guidance. I wish all the best to you during your treatments.
I did not see your dad’s age and general health. However, I will tell you this that early aggressive chemo treatment while the body is strong and the tumor burden is minimal is key to successful treatment. Based of the medical.oncologist’s recommendation, I assume he is a great candidate for chemotherapy and hormone therapy.
I had tremendous results with aggressive treatment a little over 14 years ago. Do not fear chemo! All side effects are very manageable. While it is not a walk in the park, it is manageable. The alternative is losing a window where treatment cane be very effective! Most of men miss thus opportunity and continue to fight waiting for a new silver bullet to cure and or extend life, this is not to say, that they are wrong, but chose a different treatment path.
My treatment path, which appalls many added an early broad spectrum infusion chemo as well as orals like ketozonale, erustimine, etc. I have previously posted the trial regime and written extensively on my experiences. Research it, discuss with your medical oncologist, and then follow his instructions. He is a pro at fighting this bastard. All of us are patients who had varying experiences and varying results.
Put your faith in your Creator, modern medicine, and the knowledge and skill of your pro. A positive attitude and the power of Pray from all are good things to have.
Finally, do not be like the guy in another group who wrote about how he told the pros how the cow ate the cabbage and that he wanted no side effects. I miss his posts. However, it was his choice, side effects or death. Side effects are manageable and temporary; death is not; death is final.
Keep kicking the bastard!
Gourd Dancer
in reply to
gourd_dancer-
Great advice, great attitude! I've enjoyed your replies to others in posts I've read thus far. Ironically, we are currently waiting for the oncologist visit as I type. We are very anxious to learn about the chemo protocol. I appreciate you sharing your story. It makes all of "this" seem manageable.
Hello DWDaughter, like Gregg57 and Gourd Dancer, I chose 6 rounds of docetaxel with lupron. After 4 rounds of chemo, my PSA came down to 0.1 and has stayed there since July 2017. Chemo was not bad and I would do it again. My doctor said that would be years from now. I hope years means at least 10. I go about my business every day and not think about that I have cancer. Keep us posted on your Dad's progress. Dx March 2017, age 52, PSA 415, Gleason 8. I feel great.
It's official.......casodex started today, Lupron and first round of Docetaxel next Thursday. I'm glad to hear that your PSA came down and that chemo wasn't intolerable. This is all moving so fast. Our heads are spinning but this forum and helpful folks like you are giving us HOPE and UNDERSTANDING. Thank you!
When I was diagnosed with lymph nodes metastasis in the pelvis and in the abdomen ( August to 2016, PSA 10), I decided to start ADT with Lupron and casodex and to get treated with LU 177 PSMA. They offered me up to 6 treatments. One treatment was enough to take care of the metastasis. No side effects. I continue with ADT and casodex. PSA is 0.06.
There are several clinical trials with LU 177 PSMA in the USA but it may be possible to get the Lu 177 treatment in Germany, Australia and I think the Netherlands. I went to Germany.
Those are incredible results! I'm so happy to hear you responded so well to this treatment. I haven't done any research on LU 177 but will definitely do so now. Thanks for the suggestion.
Hi I was dx in Jan 2018 at 60 years old, I just finished 6 rounds of chemo monthly lupron not bad at all a little bit of hot flashes some mouth sensitivity and of course hair loss, but nothing else, of course these treatments seem to effect everyone a little different, PSA from 1780 down to 1.9 to date we are going to continue the chemo to 8 or 10 rounds maybe more to kill the little critters.
Also something that has helped me in my life and especially now is to live in the present, enjoy each day as it comes, try to get your dad and yourself to not worry about what might happen as no one knows what tomorrow and it’s treatments will bring. You seem to have done your research and you are asking questions so whatever treatment you chose go for it and doesn’t look back. You can’t change the past.
Wow! High PSA like my dad. You're getting great results! My dad is currently feeling like he let us down because he got sick.......as if he had some control over his diagnosis. But I think that the oncologist has given him some hope today. Starting Casodex and Lupron now.........Chemo next Thursday. We have done a lot of research up to this point but honestly.....reaching out to people and having them reach back out, has been the greatest help. I thank you for sharing your results.
Ahhhh, thank you j-o-h-n. My dad gave me life so I am trying my hardest to help him keep his. We are getting ready to embark in a "war"........Chemo and hormone therapy. I hear it's not easy but willing to help him in the fight. I appreciate all of the guidance, advice and knowledge I've received on this forum. I wish you GOOD HEALTH as well.
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