new to posting on this site but have been reading since my son ( age 40) dx Jan 2018. 1250 psa bone and lymph nodes mat . at Mayo Clinic . began Lupron and is now completing 6th chemo at u of Chicago in a few days PSA is 13 after the 4th chemo session. Dr says 6 chemo should be enough and anticipates his PSA should be great after the 6 chemo sessions. will schedule a cat scan and bone scan about 6 weeks after last chemo. he is very fatigued and so far cannot exercise because of bone mat. is also taking Xgevia
Dr then says he expects him to stay on Lupron and see what happens. could be anywhere from 18-36 months.
my concern is the "wait and see what happens " and save the other drugs until then. I have read more aggressive treatment is beneficial when the cancer is still sensitive. I am pushing my son to get a second opinion that maybe is more agressive. any comments on course of treatment or Dr in Chicago who might think outside the box. again this site has been very informative and positive which has given me hope in this path we are on .
We have also done genetic and foundation One testing but nothing abnormal .
again thanks to all the brave men on this site who are willing to share there information to all the newbies . it is truly the best therapy
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Eabradley
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Welcome to the group,That is a great response from where it was. And when you say after 4 cycles, They do the labs before they do the chemo so would that really be after just 3 chemos. Early chemo is usually the aggressive treatment they are talking about with aggressivie treatment early, often the psa continues to drop after chemo. I wish you the best, we were all there, I was dxed at 49, I am 62 now.
Maha Hussain, one of the best MO's in the world, is at Northwestern. She is the principal investigator on many clinical trials, so if there is something new on the horizon, she will know.
I have not kept up on early treatments, so I don’t have advice. Instead, I have thanks. I was diagnosed at 43. My mom has been by my side the whole way. Thanks for being there for your son. I’m sure he appreciates it.
I agree with Tall_Allen - "Maha Hussain, one of the best MO's in the world, is at Northwestern." She was my MO at University of Michigan before she moved on. None better and very dedicated to her patients. I would get an opinion from her asap.
Welcome. I hope you find this group as helpful to you as it was for me. I'm very sorry that your son is going through this battle at such a young age.
I relate to the frustration of not doing more early. I kept pushing my doctor to consider more aggressive steps early, while I'm feeling healthy. His responses weren't so persuasive at first. I worried that he might just be set in his ways or fixed on a particular model of treatment. I was concerned that he was resorting to standard-of-care, despite the case that my situation was a bit of an outlier. With each visit, I asked more and more detailed questions referring to research that I see on the internet. He was patient with my questions, but was firm that simultaneous treatments were not wise for me.
In my last visit, he persuaded me that he was right. He explained that he was familiar with the trials. (Also, the other doctors all said this guy, more than any other in my region, was on top of latest research. My GP said "from everything I've heard he's 'the guy'".) He pointed out that buried in those trials (like STAMPEDE), it showed that patients with my particular parameters showed no improvement and the side effects of other treatments may lead to hard-to-manage complications. He convinced me that no option is or was ever off the table.
It was a relief for me to set aside a nagging worry that my doctor wasn't being as aggressive as I wanted. Still, there are surely many doctors who might be hesitant to adopt treatments that are outside of the standard of care (especially in places where malpractice suits are common). I am now confident that my doctor is open to any treatment and sensitive to my needs & concerns.
My only advice would be to ask him for a long conversation about this worry. Even asking for a separate appointment to discuss it (so neither of you feel rushed). If you have a good family doctor (who is used to working with other doctors), it may be helpful to get his/her help writing down your concerns, the studies you've read about and ask for a clarifying explanation of why other treatments are not being considered right now.
I'd get a second opinion for sure. My doctor is Dr Scholz in marina del Rey California. He does phone second opinions. He's well respected and does nothing but prostate oncology. He's published two books. As soon as we discovered bone Mets On me he had me so zytega, Lupron and chemo at the same time. The Stampede trials showed lupron and chemo did better than either alone and lupron and zytega together also did better than either alone. The theory then is if A plus B is better than A or B alone and B plus C is better than B or C alone then A plus B plus C should be the best. No studies yet prove that hypothesis but if you want to be aggressive early that's the logical play. The theory being it's easier to stop it early than late.
I'm a relative newbie too, being diagnosed in December 2017. I've just turned 44, have extensive bone mets, and PSA at diagnosis 68. I am on monthly Firmagon shots and have gone down the Zytiga route, it is still early days but the PSA is going (slowly) in the right direction, for now. The mental fight often feels harder than the physical one. This site has been such an important source of information, wise words keeping me sane and perspective from men who are walking the same road. Good luck to your son and hang in there.
Hi Mom E. Ask Doc about Zytiga it is a great tool in our fight. I have been on it since February along with ,Eligard shot and, Xgeva for bone Mets. My PSA was a 14 and now down to. 0.1 almost undetecable,the side effects for me at least are just hot flashes which are tolerable. The most important tool your son can use is a positive attitude cancer hates that. Best of luck Leo
Sorry to hear about your son’s diagnosis, but he is fortunate to have you as his his advocate. Welcome to the group. It sounds like he has been getting aggressive treatment, and that his PSA is moving in the right direction. The Xgeva is for the bone issues. The Lupron stops the production of testosterone, and the chemo kills circulating cancer cells.
I was Stage 4 at diagnosis in May, 2015. One bone mets to inferior pubic ramus (low pelvis). I have been on Lupron (or Eligard), and bicalutamide (brand name Casodex), which is sometimes referred to as a combined androgen blockade, continuously since then, and recently completed a course of 6 cycles at 3 week intervals of chemo with docetaxel. I have also taken an OTC pill called Prosteon, that was recommended by the urologist who made the original diagnosis, for bone health. My PSA has been undetectable continuously since I started on the androgen drugs. And, as of my most recent PET scan, my lone bone tumor has receded or become dormant to the point where it no longer “lights up.”
My oncologist at the Mayo Clinic in Jax wants to hold off on Zytiga (abiraterone acetate) + prednisone until there is a need to add it (i.e. a rising PSA). I finished my chemo on 3/13/18, got a very good report card on my first post chemo labs and follow up visit with my MO last week). He scheduled me for a bone scan in July just to check for any new bone mets or osteoporosis.
Like you and your son, at my original diagnosis I wanted to be very aggressive and throw everything including the kitchen sink at it all at once, but have learned since that does not always provide better outcomes, and can often have debilitating side effects. That being said, do your own research and don’t be afraid to confront your son’s oncologist with your questions and concerns. Get that second and, if necessary, a third opinion to reassure you that the treatment protocol prescribed for your son is the best road to follow in battling his cancer. We are all different, as is our cancer. What works for one of us does not necessarily work for all of us. Keep up the fight and keep us posted.
Hard to sit back and wait , but this is the same treatment that my doctor put me on, 21 months into my treatment,his fatigue will get better the farther down the road he gets away from the chemo. Still lots of side effects but it seems that this is the new norm in treatment
Hi, I suggest you don't push him to do try anything, let him figure that out. Post chemo he won't want to try anything, understandably so. Let him REST, chemo or rads are taxing as hell, and at this stage trust he wants to eat and rest.
Sorry you are here, but you will find a wealth of information and support. Alicia Morgans was my husband's medical oncologist when she was at Vanderbilt, but she is now at Northwestern. She specializes in prostate cancer treatment and research, and believes in aggressive early treatment. She is incredibly kind to boot. We miss her and recommend her highly.
My husband's consulting research oncologist, Eric Small at UCSF (also a national big name in Prostate Cancer research and treatment) -- long ago gave us this analogy: it's like the pony express. You want to get as much as you can out of each horse/treatment before moving on. Patience is the hardest thing. Before doing anything else, your son needs to recover from chemo, and see how that goes. If he has good results, ride that as long as you can.
(That said - I have heard that earlier Zytiga is being used now -- wasn't the case when my husband, dx at age 52 with advanced metastatic disease, first started this rocky road). But you definitely have a few months before even thinking about that.
A second opinion to help you understand and learn different options is a good idea. Doctor shopping until you find someone who does what you want, maybe not so much. Sounds like the Northwestern doc recommendation is a good place to start in Chicagoland.
My husband is at a similar crossroad but farther down the road. After 4+ years, he has exercised all treatment options (Lupron, Casodex, Xgeva (for bone help) + calcium, early chemo, RA223, Provenge (immunotherapy), castration resistance -> then Xtandi with Lupron and Xgeva continuing -- 2 good years, now fingers-crossed for Zytiga maybe working, although odds are low). He has a lot of anxiety about "waiting to see if it works." But you do have to wait. The PSA tests are there to make sure there is not a skyrocketing effect, and he feels pretty good overall -- if either of those changes, then we act sooner. But he really has to just believe the treatment is working or hoping that it's working for three months, until we get next scans.
For clinical trials, be careful as you consider them. Some are for earlier stages, but a lot of times, clinical trials are when there are no standard of care options left. (We are looking at them much more now . . . ) Note -- it's my understanding that clinical trials that are at earlier stages, patients are guaranteed the standard of care at a minimum, and then a placebo or active new treatment. Thanks to recent clinical trials, there are now so many more early options (like the chemo he's getting) than just a few years ago.
There is so much that's scary about facing this, and I'm just the caregiver. I can't really imagine (just guess a little) what happens in my husband's mind as he contemplates his mortality.
The chemo is rough but thankfully relatively short, and your son is more than half way done (but disclaimer -- the chemo builds and the last treatments are harsher --but ameliorated by being the last treatments!) I hope he recovers well and continues to have good response with blood work and scans. Plan something fun for a couple of months after the chemo is done? Focus on the positive as much as you can. Keep researching and asking questions and getting info, but try not to get too caught up in the disease. Stay caught up in living.
All best to you at the beginning of this long complex and trying journey.
- Brenda
p.s. as the caregiver, you might also look at the prostate caregiver site that was recently started up. take care of yourself too.
Video edited out. I guess I stepped into it this time..... meant NO HARM, NO FOUL...
CORRECTION: Well I'll be a firecracker on the 4th of July... THE VIDEO IS THERE.
Good Luck and Good Health.
j-o-h-n Sunday 05/06/2018 9:22 PM EDT
To Eabradley, my mother is 90 . She’s still watching over me and I’m 57. We learn compassion and caring from OUR moms. 40 that’s a very young hard blow TO GET pc at this age.. My heart goes out to your young son. 40 is young. With your love he will,make the correct choices and hopefully live out decades of living and enjoying his life.. peace to Moms, thanks for the love...
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Update on myself and looking for all of your wisdom out there.
Hi we are new to this site
Hey y'all - I'm doing a PCa 5k in Joliet Illinois in June with an HU APC caregiver 
MRI found 2 cm lesion on pelvis, doctor said to ignore it.
