my name is Ross I am 59 yrs old and on Jan. 23, 2018 was diagnosed with stage IV prostrate cancer I was in the ER on am unrelated event and after 2 CT scans the reason for being in the ER got really serious, after a little looking around on the internet it was obvious that I was a Stage IV with no symptoms , so starts testing, PSA 1790 , gleason 9-10 I am currently on Casodex and Lupron and awaiting my first chemo treatment in two weeks of Docetaxel for 6-8 treatments all I can say is WOW my family and I have been turned upside down by this as I am sure all of you went through the same roller coaster ride with this diagnosis. I am in fairly good condition but I am ramping up my fitness with yoga, weight lifting, and cardio workouts daily to try and lessen the side effects of all the medical treatments and survive / live the best I can. after many hours / days on the web I found this site seems very positive with lots of men willing to share their lives.
I am new : my name is Ross I am 59 yrs... - Advanced Prostate...
I am new
Hi Ross. Welcome. Sounds like you are doing the best that you can, for now. Even with "high numbers," men live many years after diagnosis. Our goal is to make our cancer chronic rather than fatal. Good that you are here...we are all here for you as you are now here for us..one for all, all for one.
Thanks Darryl I plan on being around this site for many years to come!
Hi Ross,firstly sirry to hear that you found out your stage 5 with high psa?your on the right meds?hopefully the course of hormornes will knock your psa down as much as posible?and the chemo will also kill any cancer ceils in your blood stream?so your on the right medical path?wish you well my friend Ross,your on a great cancer Forum?and we all behind you wishing all the positive out comes and quick recovery to?all the best Ray
1961 was My year also.. boy we’ve come along way. In the last 57 yrs... take care Attila.
Strength, attitude and hope. I have been diagnosed for 8 months. My treatment is Zytiga and I have managed to lower my PSA from 1390 to 0.2.
In this forum there are very interesting people, with a lot of information and very willing to help.
It has been very useful for me.
A lot of strength and to fight
Welcome.
It sounds like you are getting good care. There are a lot of approved medicines for advanced cancer now. Were they able to biopsy any of your metastases?
no just the prostrate 12 of 12 positive and bone scan, and blood work, I live in rural Arizona 60-200 miles from different treatment centers and it is snowbird season so all the facilities are booked , my appointments are far apart but I have been lucky that my job allows me to jump and run when there is a cancelation, and of course at this point in my journey I have much to learn about treatments, test and such
As a Phoenix metro resident I know what you mean about snowbirds causing long treatment delays. I was 'lucky' to be diagnosed in July of '16. Good luck on your journey. It is a shock for everyone to receive that diagnosis.
Summer, you might get in quick.. I’m a snow bird now, happy to bail to the mountains this year.. looking like it’s going to be a hot one this summer. Dam snowbirds! They mess up everything.
I’m in Tucson. Living rural and far from docs is an additional chore.. I too live away from town . When I did radiation I rented at summer rates a condo near the RT office for those two months. You will make the correct decisions. Then buckle up! And hold on for the ride! Your attitude seems good That’s 3/4 of the battle..
Glad you found this group. A few members should be, (maybe they are), world renowned prostate cancer oncologists. Some very brainy people frequent this group.
My husband had a similar diagnosis, in a similar way, 3 and a half years ago.
Did Zolodex and Bicalutamide which gave him a good three and a half years, started Xtandi 4 weeks ago which has bought PSA down from 11 to.6
We make the most of everyday and fully intend to have many more 'days'
I guess we've been lucky, he has few side effects, gets a little more tired, but still walks 5 miles a day, does lots of voluntary work
Life is good.
Stay positive.
5 miles is very good!
We are here to share, encourage and sometimes grieve :-(. A ton of experience here and you may go thru profiles and posts to glean info that may be helpful. I'm also Stage IV, PSA@ 840, GL 7. 30 months ADT, 15 Taxotere sessions in 2015 and got a 1st nadir of 0.2 it rose to 0.5 and then a 2nd nadir at 0.1
My best to you on this journey
Randy
Welcome Ross: I stumbled upon this group a couple of months ago and it’s a well informed experienced group. Sorry to hear of your horrible surprise. It’s uncommon I think as a rule, but this symptom free finding does happen with guys more commonly not monitoring there PSA’s prior, and it even happens with guys following normal buopsies( no positive cancer pulled from the puncture grid( prostate) where they find stage 4 Pca outside the ‘ normal’ prostate. It’s rare but shocking. I am under the same treatment as you currently, however I’m 5 years post diagnosis at age 59, where my radiation treatment cleared up the Pca, but 3 years post IMRT treatment, my PSA crept up and before I was on top of it, it hit 200, and the bone scan revealed Mets to my spine here in 2018. Lesson: once diagnosed, it’s there to be addressed forever. You’ll probably do great with Lupron and bicaludamide. My new urologist/ oncologist says for me to slow down and give the Lupron a chance( in my case a 4 month shot) to work. Study yoir options and study a thing or two about targeted immunotherapy for Pca. Some guys in trials do great with this while some do not. Our bio individuality makes it impossible to conclude one treatment approach is viable for all. You’ve got time to consider all future treatment options. Cancers seem to build a resistance to ADT & chemotherapeutic drugs over time, so hopefully you’ll have a good MD oncologist you can trust to guide you. Best to you, Stan AZ/AK.
Forgot to mention, I live in AZ part time and used to live remote in Showlow for years before selling recently. Best of luck getting to those PHX doctors.
Welcome! Much knowledge here, and good luck!
Hi bhr17, your story is remarkably similar to mine. I presented with chest pain to an emergency department and the investigations revealed a very healthy heart but lots of cancer in my spine on the imaging performed in that department.
Like you I was then immediately on the rollercoaster.
I started androgen deprivation therapy and then docetaxel. My PSA has plummeted but still remains elevated at around six.
The chemo is not a lot of fun and I found the most useful thing to do was to keep my exercise going as much as possible. It sounds to me when I read your story that you like me enjoy physical fitness and health. There is good evidence that being on androgen deprivation therapy specifically reduces the strength of several muscle groups. These are quadriceps, hip flexors and soleus. I have been working on these muscles and the rest and have in fact increased my strength despite the terrors of no testosterone. It has been hard work but of all the things that I have done it has probably improved my quality of life more than anything. I agree with you that hearing other people's stories gives us hope for improving our quality of life. I have just begun some treatment which is a probably premature. Lutetium PSMA treatment is validated for people with bone pain but not yet shown to improve quality of life or length of life at relatively early stages of disease when the cancer is said to be still androgen deprivation responsive. I am guessing that it probably will but there is no evidence because it has not yet been studied .
The official term for when ADT stops working very well is "castrate resistant" This term annoys me somewhat as I don't know any man who is keen on the idea of castration and I think we are all castrate resistant!
I would prefer to use the term not controlled by hormonal inhibition.
There have been some "positives" in receiving this diagnosis for me. One of them has been the experience of having so much love and support from my family and friends. This has been truly lovely.
There are a lot of negatives however and the worst for me is not the fact that this disease will kill me but that I no longer have testosterone which makes me feel completely different. I really do miss the old me.
It is better though than being dead which I certainly would be if I did not have my testosterone suppressed.
My advice to you is given with caution. You need to make your own decisions clearly and not listen to too much advice from people like me.
For what it's worth though I will tell you what I think you should do.
Keep doing what you're doing with the intention to improve your quality of life as much as possible and hopefully extend it somewhat.
Avoid those who will give you easy answers with the latest faddish food change or supplement.
Also be careful of those who push you to have a positive attitude all the time as this is impossible with this life changing experience. There is no evidence that a positive attitude makes any difference to your length of life but it certainly makes a huge difference to your quality of life. The problem with those who push the idea that you have to be "positive" is that when things go downhill there is considerable risk of feeling like you have failed, that you weren't positive enough.
When this eventually happens, as it will to all of us, it is the bloody disease not us that is the problem.
Good luck have fun and enjoy everything you possibly can. My thoughts are with you.
Thanks for the great reply and advice, I am a Facilities Dir. at a small rural hospital and with all these caring friends here it is a little annoying the people that want to tell you will beat this and live to be a hundred, by positive thinking, becoming a vegetarian, and on and on I know they mean well but I am a realist and understand my situation, yes I am going to fight this disease with every ounce of my being but I am not expecting miracles, so for the rest of the time I have on the sunny side of the grass I am mentally working hard to live for today, enjoy family, friends, nature and all that comes with being alive.
I hope that things go the best I can for you. I am an Australian doctor and have looked after people for years with other bad diseases as well as prostate cancer. It has always pissed me off that people peddle hope so ferociously. They do this to protect themselves because they want to feel safe and when we have illness that illness threatens their sense of security. I tell them to respect my views don’t push Stuff that is clearly in accurate and potentially very harmful. Mostly they leave me alone then. My good friends never do this to me and provide real support not self interested garbage.
Hey Ross,
sorry that you have found your way here......it is a very informative place and we all sail the same boat. Wishing you all the very best and ,welcome
Hey Ross, Welcome to the group, but sorry you had to become a member. I was diagnosed 2 years ago, also Gleason 10. My Radiation Oncologist told me that Gleason 10 cancer doesn't behave and he's certainly been right about that. I've been through chemotherapy, which was no fund, but bearable, unfortunately it didn't do much for me. There are some brilliant minds and very well informed people on this site, so when you have a question, throw it out there, you will get lots of sensible answers. I did an exercise trial and they incorporated weight training, so I would suggest you seek out a qualified exercise physiologist or rehab specialist trainer to make sure you have good technique and be careful of over-loading on the weights as the ADT and the cancer itself can significantly compromise your bone integrity and the last thing you want is a pathological fracture to deal with. Best of luck. Cheers Paul.
Good morning, Ross. Welcome to the group. Sorry to hear about your Stage 4 diagnosis, and that you had to join us, but we are happy to have you share your experience with us. There are several people here who are very knowledgeable about prostate cancer, treatment modalities, including alternative therapies and supplements as an adjunct to your oncologist-prescribed treatment program, treatment sources, and are a good source of information and advice. And all of us are caring and concerned. I always like to say that we are all riding the same train, but in a different car, since our experiences are all slightly different.
Similar to you, I was asymptotic (other than frequent urination particularly at night) Stage 4 at diagnosis, which came as a result of a DRE (digital rectal exam) during a regular physical exam 3 years ago with my family physician. My PSA was only slightly elevated at 4.65, but he was concerned about the hard spot he felt, and referred me to a urologist. More tests, a biopsy, and CT/PET later and I was Stage 4 with a Gleason of 7 (4+3), cancer in all 12 cores, and a single hot spot on my pubic bone. I got started on Lupron and bicalutamide right away, which has kept my PSA undetectable for 3 years so far. And my lone metastatic tumor somehow resolved (thank God) and I have never had any bone pain. I recently completed a course of 6 chemo infusions with docetaxel to kill off circulating cancer cells. The side effects have been a little rough, but fairly predictable and not intolerable, and there are ongoing side effects from the ADT drugs that you learn to live with. It becomes your new reality, and beats the alternative.
Like for you, the diagnosis was a shock, and a life changer for me, but it has not all been negative. I have found incredible support from my wife, family, friends, my church, and the group here in HU. I have a rekindled faith in God, and a changed perspective on life, including what is truly important, and what my priorities should be. I am thankful for every day I am given.
It sounds like you are off to a very good start on your treatment! They have made so much progress in treating advanced prostate cancer in just the past 5 years, with new drugs, new combination therapies and treatment protocols, and more promising things are either being researched or already in clinical trials. Best wishes to you for success with your treatments, and a good long life. Hopefully, we will both live to see Stage 4 prostate cancer become a chronic disease.
Mark
I am in a similar situation to you. I had RP and failed XRT. Currently just on Lupron and Casodex after SBRT to the hip. I am curious why you had the chemo with PSA undetectable (if I understand correctly). Did you have a circulating tumor cell test or just the presumption/probability of micromets? Is there a way to determine the efficacy of the chemo while PSA is undetectable? Thanks.
Hi, jdm3
The short answer is: Just the presumption that there were circulating tumor cells.
When I started ADT 3 years ago, I didn’t have the option of doing early chemo because at that time the results of the Stampede clinical trials did not show any benefit in terms of PFS or OS for oligometastatic guys like me, and we were excluded from the pool of patients who qualified for early chemo. They have since expanded the early use of chemo to castrate sensitive patients with low volume disease. Back in 2015 when I started my treatment at the Mayo Clinic in Jax, I told my MO that I wanted them to be aggressive in my treatment plan. So, at a regular follow up visit with him last October we discussed adding the chemo now that it was available to me.
I honestly don’t know if there is a means of assessing the efficacy of the chemo since my PSA was already undetectable. One of the other guys in here might know if there is a test to determine the volume of circulating cancer cells before and after chemo. To my knowledge, only time will tell how much good it did. I have had a reply or two from people wishing they could have had the early chemo.
My oncologist and I also discussed Zytiga + prednisone as an alternative to chemo, but he noted that the Zytiga is an ongoing (for an indefinite period of time) therapy, whereas the chemo is 6 treatments and you’re done. Also, (based on what I’ve read), while the immediate and long term side effects of the chemo are probably worse than those for Zytiga, I wanted to get the chemo over with while I was still (relatively speaking) young and otherwise healthy, and better able to deal with the side effects, and save the Zytiga for later. I asked him about starting Zytiga following the completion of my chemo. My rationale, based on the Latitude study, is that it would give a knock-out punch to remaining ctc’s and halt the production of the cancer cells in the adrenal glands and the cancer cells. He was not in favor of starting Zytiga immediately after the chemo because it, too, has short and long term side effects, and (more importantly) it has not been FDA approved for low volume patients (Gleason less than 8, or fewer than 3 bone or visceral mets), so Medicare and my secondary insurance would not cover it.
I meet with him again at the end of this month, and we will go over all of these issues at that time.
Sorry for the long-winded explanation, but I hope it gave you information that will be helpful to you in deciding your treatment plan.
Have a blessed day, and best wishes to you!
Mark
Mark:
Thank you for the explanation. This is very helpful in my own thought process of trying to figure out what next and how aggressive to be. I am with an MO in Boston (Dana Farber) and he is bright guy who is at the forefront of research and clinical trials. However, when I said I wanted to be aggressive while I feel relatively strong (I am 56 yrs old), he said let's just start with the SBRT and the ADT - Lupron and Casodex. I have responded well to the ADT. Still don't know if the SBRT eliminated that hip met.
I'm with you. I want to hit this as hard as I can upfront, but when I ask about chemo, Zytiga, etc... he says "too early. Let's see how this goes first." Difficult to know how much he wants to stick with a protocol he knows or if he believes the benefits/risks/side effects are not worth it at this point and the overall survival statistics don't support it yet. I'm still learning. My next appointment is early June so I am going to press the point again for a better answer.
For what it's worth, I asked about Metformin and he said there is a publication bias for positive results and they think it is not advisable and may even have detrimental effects in some cases. On the other hand, I asked about statins since my latest cholesterol rose dramatically - possibly related to ADT ? - and he actually said "yes" citing that statins may have a mild benefit in the fight against PCa. Hmmm.
Please keep us posted after your next visit.
Stay well,
Josh
Good morning Josh,
It sounds like you found yourself a great MO at a world renowned cancer institute. Good for you! Continue to work with him, don’t be afraid to do your own research and ask questions, and be ready to accept his advice regarding your treatment plan. I think you are off to a great start, and will have a lot of years to enjoy life.
It was sort of serendipitous, and totally aside from my PCa treatment plan by my Mayo MO, but my family physician has had me on simvistatin for many years for cholesterol issues, and Metformin for a year or so for type 2 diabetes. I can’t tell if they are helping, but if they are, good deal. Most of what I’ve read about Metformin has been positive, with indications that it works synergistically with, and improves the efficacy of the ADT, and helps lengthen the PFS time. Who knows? But, my Mayo MO has had no objections to my family doc ‘s Metformin Rx, so I will continue on the program.
Keep me posted on your visits, and I’ll do the same.
Have a blessed and wonderful day!
Mark
Thanks Mark.
Yes, I am going to ask my family doctor about a Metformin Rx. In the meantime, I have added a little Berberine, which is the naturopathic, non-Rx alternative.
If I've learned anything from this ordeal (besides making the best of everyday and counting my blessings), it's that we need to beware of the economic drivers, politics, and referral patterns of conventional medicine, and, to your point, we do need to do our own research and advocate for ourselves. This website is fantastic in that regard - a wealth of information and camaraderie.
Stay well,
Josh
Hi,...I'm Lynn, husband Sam, Dx at age 65 PSA 465 something. Bone mets and was operating on a tumor that had wrapped around the bone in his left arm. Surgeon saved his arm. Sam went it's almost ten years on casodex and hormone needle. Wish he had chemo early on, like you are doing. Sam is now having a pill form clincial trail which has just been FDA approved...
Best wishes coming your way and, you will do well for many years to come, there are so many new treatments and more in the making, The targeted therapy that my husband has started they say is a real game changer for PC.
Keep us posted, we are all here for you!!!
Sincerely, Lynn. Pa.
Go Sam Go. !!!!!
Welcome, lots of good info here and with moderated posts by Darryl, most of the shared data here is useful. However, as in many scientific research, even experts often disagree, so you have to read and read more, then decide on which one you think is best for yourself.
Welcome, you will find there are lots of us in the same condition and willing to talk about any of your questions .
Ross; Don't be afraid of chemo. It will save your life. Of coarse everyone's different, as in In my case the only side effect was my fingernails and toenails turning grey. I also had neuropathy in my toes. The nails grew back fine and the toes are recovering slowly. If at any point your doctor prescribes Lupron, there is a titanium capsule that is implanted in the upper arm. It will administer the Lupron automatically for one year. Beats making the trip once a month. Good luck and God speed.
Ross; Regardless of what some people say, hope is a good thing. Being positive not only helps have a better quality of life but positively effects those around us. As for me; I do what the doctor tells me, take my meds and live my life like I would if I didn't have this disease. If things turn south, It's, "OK Doc, what's next"? Than I go fishing and have beer. Having a why me attitude won't chase the cancer away, only your friends. You have a good attitude. Stay with it.
Right on ! Pokeragain.. it’s all about dealing with the cards that we are dealt.. not time to fold yet.....I like you’re attitude guy...
Hi Ross! My husband had the same experience. He is 64. His PSA before treatment was 1450 and after his 2nd chemo (Casodex and Lupron as well) it dropped to 54. 4th chemo is scheduled for tomorrow, so we are looking forward to PSA results after 3rd.
I agree this site is terrific. People here are experienced, intelligent and so helpful and hopeful!
Prayers for you and yours.
1450 to 54..... wow ..that’s a big drop.wishing him a continued good outcome..
Ross,
You got a lot of good advise already. You also seem to be on the right treatment path, both medically and personally. I was Dx Oct2017 w/stage4 at age 52. Turned out I had BRCA2 mutation. So definitely do the genetic testing - there are current and future targeted therapies with potentials.
Most importantly, don't lose your head. It's easy to get sucked into the downward spiral of negative thoughts (I know from personal experience). With practice (as well as diet and exercise) you will build a brighter mental attitude. Keep at it.
Also, if possible, build a medical team around yourself, and get second opinions from reputable cancer centers. Educate yourself about the disease (this site and internet in general) and you will feel a lot more at ease.
There are a lot of new drugs and treatments on horizon. Hope is not misplaced.
Where is the cancer?
Ross, you are on the right track. Stay positive; run away from negativity. It is hard; hit it early. Fourteen years ago at 57, I faced Stage 4 with mets. PSA a lower than you. Hit the bastard hard while your body is strong and before evasiveness overcomes. Your mets can be resolved and replaced with new bone growth. Key is killing the metastatic cells, some so minute that they can't be seen floating around in your vascular and lymphatic systems. Infusion of drugs is the only way to do that.
I was most fortunate to be able to undertake a six month chemo - hormone trial that did the trick. It was different from the standard taxane based drug in that it multiplied effectiveness by adding other reagents into the mix.
If possible, find a Medical Oncologist in PCa research and academia. He will be ahead of the rest. Phase II trials are good. Look for them. I found myself researching the subject everyday.
Gourd Dancer
Have super courage my Brother, no symptoms means your tolerance is high which is excellent, fact is dis ease is 75% psyche 25 physical, I know that's a strong statement but your belief is stronger than your body. Evidence no pain no symptoms but do get as much info for treatment as pos, they are not all good.
Sage advise...
Good Thursday Afternoon bhr17,
Ross, I am almost 6 years into this battle (see bio for complete treatment history).
For Docetaxel chemo, please consider the following:
1. Ice your hands and feet during the 1 hour Docetaxel infusion to mitigate peripheral neuropathy. My Med Onc also said to take 100mg B6 orally daily to prevent same.
2. I had small infusion of Aloxi before each infusion to prevent nausea and it worked.
3. To combat chemo fatigue, I took Wisconsin American ginseng. Google Mayo Clinic and ginseng for their trial.
4. I used all Biotene products for mouth care, as your mouth may get sore.
5. My Med Onc prescribed Dexamethasone to be taken the day before, the day of, and the day after each infusion. It moderates any immediate fatigue.
6. I was prescribed On Body Injector of Neulasta at end of each chemo to boost white blood cells. Med Onc said to take Claritin starting day before chemo for 6 days to prevent bone pain from Neulasta.
For me, Docetaxel/Carboplatin chemo combo worked, driving PSA from 10.8 to .4 after 6 cycles.
Best wishes. Never Give In.
Mark, Atlanta
Greeting bhr17.
My first reaction when I found out was "why me?" (and not my ex-wife). But then I said to myself "Self just suck it up and fight the M.F. beast". So here I am fighting. You've come to the right place for information and camaraderie. Keep up the good fight!
BTW is the kid for sale? ( LOL - he's so cute).
Good Luck and Good Health.
j-o-h-n Thursday 03/29/2018 6:35 PM EDT
I would not trade him for a clean bill of health I have 9 grand children from 3 sons and they are all a joy to our life.
Why not my ex. Wife? .. so funny , Shecky green , take my wife please? I read that to my wife here by my side. She is tooling. Thanks j-o-h-n for always bringing humor and truth..
She’s rolling in laughter, we all can use some of that. Thanks..
Thanks.... I like and look forward to your posts....
Good luck and Good.
j-o-h-n Saturday 04/14/2018 8:51 PM EDT
Hi Ross, I found this site when I needed it the most. You can read my history on my bio, similar to you prostate Gleason 9 with Lymph involvement. Stay positive do lots of research, There are some men here who have been fighting this for 20+ years. I’m on Zytiga and Zoladex since the start of treatment, it’s not easy but after 1 year it’s starting to get easier mentally. I walk a lot, stay busy and always take a day at a time👍I’m now 48 so it was a huge blow but I’m glad to be here and live a fairly normal life. I lost muscle mass on hormone therapy so use weights to combat it. 👍
Hi Ross,
I love that picture....I wish there was a function we all could share photos..I wish you the best in your journey
Hi Dean I see you are new to this group also lots of good people and words of wisdom, all the advice I can offer is to take it one day at a time,stay busy, enjoy the people and things you love and most of all get yourself good docs and do your homework on this beast. I guess it gives me a little peace of mind knowing that there are many treatment paths so if one fails or just stops working it’s not over. One of the best pieces of advice I got from a brother on this site was that it is now , my job to take care of this body, eat heathy, exercise, stay positive, enjoy every day and everyone in my life because this is truly all I can do, the docs, drugs and treatments will do what they can.
Thank you for the words Ross... I am going fishing with my son right now!.. it’s time!!
That’s how it’s done have fun
Ross. Your comrades in arms stand alongside you in battle against this insidious common foe we fight; collectively and individually. It will never defeat us from loving every moment with what is really important in our lives, like that little toddler bouncing on your shoulder.
I am new here as well- I feel well supported and informed on this site and I hope you will too! I love your picture- so cute!
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