I'm on Lupton + Zytiga + Prednisone. Being treated at Stanford by Dr. Schrinivas but live in Reno, NV. Just hospitalized due to severe lower left back pain. CT done @ Renoun Hospital in Reno indicated bone metz are causing this pain.
I've been trying to reach my oncologist for a week and still waiting to hear back. I'm wondering what my options might be at this point. Gleason 8 score, current PSA under 1. Diagnosed in July 2018.
I'm concerned this may be the beginning of the end for me.
I had the same problem with bone mets on my spine. I had 10 treatments with Radiation to my spine where the bone mets were at. I have no more pain now. I've taken Zytiga in the past, but now am on ChemoTherapy.
I can't do chemo due to low red blood platelet level. That therapy is off the table.
Concurrent chemo (taxotere) and Xtandi darn near did me in, but bone mets died. Hard fight but now they tell me I have a future. Get with it soon and kill the beast as best you can. Sorry for your pain , but seems to be a normally temporary part of this fight we all have to some extent. Best of luck to you.
In addition to the comments below, did the hospital give you something for pain? You shouldn’t have to suffer from the bone mets before you (presumably) have them radiated.
The hospitalist gave me a prescription of long release oxycodone. It couldn't be filled because the doctor didn't know the new drug laws and didn't get it pre-approved. I messaged my Stanford family doctor and got something prescribed. It's oxy of some kind.
I live in FL and qualified for medical marijuana. It helps me tremendously with the Lupron side effects and pain management. It also helps so much with the emotional anguish of what I am going through. You can get different dose levels so you can use it during the day and still be with it. It got me off of 12 years of taking Ambien too. It takes a little while to get used to, but well worth it.
If you don't mind me asking this but can you tell what type of medical marijuana you are taking that got you off Ambien?
You have a low PSA which is a great response to treatment.
What was your pain like before? Has there been a progression in your bone mets since the start of treatment? Also, is your Alkaline Phosphatase going up or down? Are you being prescribed any bone strengthening meds such as Xgeva or Zomata?
I've had pain on off throught my treatments, even though the mets have been receding slightly.
Wish you the best, I agree with the above comments regarding radiation if you can limit it to a few areas. A Radiation Oncologist is the best person to talk to about that. Good luck.
I'm not going to work with anybody in Reno. The medicine here is deplorable.
I know your battle!! My husband n I live in Las Vegas and he is under the care of Dr. Nicholas Vogelzang w/Comprehensive Cancer Centers. Dr. V is AMAZING!! He is a clinical researcher AND a cancer survivor, he personally knows the struggle. My husband has been under Dr. V's care since Feb and right now we are about 3 months from completion of treatment (included Zytiga, Lupron, chemo, Radium 223). His PC has been put in remission and the Radium is wiping out the bone mets. Dr. V threw the "kitchen sink" at us, and yes the journey has been one hell of a roller coaster, but to hear "remission" makes it all worth it. My husbands radiation and chemo were all done under Dr. V's supervision, as there is a team of RO's in the same office/group as Dr. V making this treatment plan seamless. I would be happy to try to assist you in getting an appt w/Dr. Vogelzang if you would like. Sending love, light and prayers your way...
Thanks for your help. For now I have to stay @ Stanford and may go to UCSF.
I dont know anything about alkaline phostaphase. Nothing else to build bone strength. I'm suppose to see oc on 1/17. I sure hope somebody calls or messages me soon. I guess they're all gone for the holidays.
I may have to try UCSF next if this continues.
If you decide to go to UCSF, these links might be helpful.
ucsfhealth.org/clinics/geni...
radonc.ucsf.edu/prostate-ge...
Charles
This paper talks about ALP in advanced prostate cancer, along with LOTS of other related info.
"Alkaline phosphatase in metastatic castration-resistant prostate cancer: reassessment of an older biomarker" ,,,
FUTURE ONCOLOGY VOL. 14, NO. 24,
Published Online:21 Jun 2018
futuremedicine.com/doi/10.2...
Charles
I too was initially being treated at Stanford. My first question to you would be, do you use their MyHealth app? You can see all your medical records, results, etc and you can email any of your doctors through it.
I know exactly what you mean. As I said, I was "initially" being treated at Stanford, Dr. Shaw was my treating oncologist. I was very unsatisfied with the service I was getting. I just felt, like you said, very unprofessional. It has nothing to do with his qualifications, I'm sure he has plently of knowledge, but we just did not get along, nor with the radiation oncologist. I couldn't seem to get any information.
Anyway, I started shopping around for a second opinion and I chose UCSF because they are ranked #1 in California. And am I ever glad I did. I met with the doctor, liked what I heard, she is now my treating oncologist. It's an important decision.....it's my life we're talking about here. I would recommend that you make an appointment to at least get a second opinion. Anytime I contact my doctor I get a response right away. Hope that helps. Good luck
I may be doing the same thing. Apparently vacation is more important than getting back to the patient in crises.
You would be surprised how unprofessional the professions are here. Very sloppy work everywhere. I came from the Silicon Valley 20 years ago and was unable to work with other professionals due to lack of ethics or knowledge.
I'm use to a much higher standard of work than I continually see here.
With bone mets, you should have had a bone densitometry study to see if you have osteoporosis or osteopenia--weak bones-- and treated accordingly. There is a clinical trial for radiation therapy for people at risk of spinal fracture with spinal metastasis at MD Anderson--see page 8 at the bottom
cancer.gov/about-cancer/tre...
While oxy is good for pain, some Nsaid like indomethacin may help with pain, but you should always take with food.
You might look for an Oncologist at MD Anderson for a second opinion if you enroll for the clinical trial
You are probably on Tumeric , Birm, and other supplements....
Best of luck,
Fish
Cant use endometacine. Almost had kidney failure as a result. I originally spoke with MD Anderson and they initially agreed with Stanford medicine protocal. But things have changed so may be worth a recontact.
Than ki s.
I've heard that Lost Wages has terrible medical institutions. So get yourself to a reliable out of town Medical Oncologist that specializes in geriatric Pca as soon as possible. We all feel your pain because we've been there, done that and have the Tee shirt to prove it.
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 12/30/2018 1:01 AM EST
Bone mets then Radiotherapy has helped me. Immediate pain relief.
Also as Nalakrats says opiod pain relief is an option. Morphine usually.
Lower leg would seem to indicate hip met issues rather than spine but Radiotherapy is the answer.
Maybe worth asking for Ultrasound to eliminate a DVT as well.
Also bowel movements and ensure no pressure on spine. This happened to me and was agony and cleared up by taking Laxido.
It is not the beginning of the end.
I was dx 8-2015 stage 4 Gleason 9 extensive Mets to lower back spine ribs femur and the list goes on.
It is almost 2019 and I am going strong.
Do not give up.
Treatment can go onfor a long time.
Radiation seems like a good next step. See my profile.
Hey Ldtyson- Same thing happened to me. Was diagnosed in October 17. In December Ihad extreme back pain and was hospitalized. Thought it was the beginning of the end. Same PSA and Gleason as you. Turns out I had a minute fracture in my pelvis with no recollection of how it happened. Couldn’t walk without a walker for about about 90 days. With help from pain meds it’s a year later and still kicking. Bone Mets make them weak so any daily activity could cause fractures or breaks. I get Zometa now that helps with the bones. Hang in there! You still have plenty of time!
If you pain is worse standing or walking you may have fractured your hip socket like I just did. In any case get an MRI to localize the problem and get some radiation.
It is surely, as someone famous said just "The end of the beginning." Sure you will be around a long, long time. The DVT and Pulmonary Embolism issues are history now? My red platelet has never been in the "normal" range. Always a little lower. Is there a way to build the level up? Not a dr. but seems like chemo is your best best.
My husband is seeing a Epigenetic specialist in So Cal. He can get you in quickly, you can spend 2 weeks there getting IV treatments of polyphenols and other natural remedies that address your specific cancer mutations with a good chance of getting on other side of this quickly. It’s “out of pocket” as they are still working on “FDA approval”. But look up Orange Coast medical center of Hope. We are having some success after a few months!
I also have bone mets, ribs and spine. Just finished a combo of Taxotere and Carboplatin (carbo works for my rare aggressive type). I required 2 transfusions to keep red cells up and am convinced the chemo has given me more time. Also a weekly lower dose (3 at 7 days apart, then one week off) is easier on the blood.
Like others, I would recommend a second opinion form UCSF. They have one of the highest rated PCa programs. I see Dr. Eric Small but receive chemo treatments at another med group closer to home. For radiation in the Bay Area I would only use UCSF because they treat so many PCa patients ( I've had eternal beam, 30x, and HDR there) and there is a potential for damage. As mentioned by someone else if you aren't on Xgeva or Zomata I don't know what the rational would be. As for bone pain I found ibuprofen worked better than several opioids. Seems everyone reacts differently so some experimentation is needed. Best to you.
Mike
I had similar numbers, with bone mets in hip, pelvis, and one soft tissue (lymph node). That was almost 3 years ago. I'm now 65 yrs old with PSA <1. PSA is just starting to rise indicating resistance. Switched from Lupron/Casodex/Xgeva to Lupron/Xtandi. Mets are undetectable. May ask about radiating those spots to kill cells there, although the hip might be problematic. Hang in there. My Gleason was 7. You have lots of years ahead of you. For anyone else reading this, should I consider chemo and/or radiation to kill off the cells in the currently undetectable mets, then maybe the prostatectomy?
I too, went to Stanford. I saw Dr Shrinivas once. She suggested Lupron only, no zytiga. Not my plan. Went to Dr Eshaghian in LA, he's good, but not much time to talk. Also in LA area is Prostate Cancer Specialists (I got second opinion from Dr Turner, also there is Dr Lam, and Dr Schultz (senior guy). They are at Marina Del Rey. Both places are good. I did do a G68 at UCSF. Very helpful information.
I'm still at Stanford for radiation (for when I will need "met control") but not totally happy with past initial prostate bed radiation. If I did over again I would go to UCSF.
Good luck,
Craig
Fire that doc yesterday!
Hi, I’m also with Stanford following diagnosis and prostatectomy this summer. Dr Srinivas added Lupron and Zytiga, and for radiation I found Dr Bagshaw very helpful. Perhaps try reaching her as she teams with Dr. Srinivas?
I’m now getting the actual adjuvant radiation treatment with Dr Swift at their South Bay center as it is closer to home and they seem good. 2nd opinions from UCSF confirmed all the plans giving me some peace of mind.
When I’ve had questions they’ve all been answered pretty quickly, within a day or two at most, but at first I also had a hard time finding time on their schedules for in person meetings —they’re obviously very busy.
All our situations are unique, but in my case it was persistent PSA after surgery (Gleason 4+3 no margins/mets) and then an Axumin scan that identified 2 missed pelvic lymph leading me to this place.
Hope this helps...
I wish they would get back to me. I've been waiting 9 days for their response. Pathetic for a well know research hospital. I've been a day and a half in bed with back pain.
Bone mets and no Recommendes treatment 
Bone Mets and rising PSA
Bone mets
Arthritis or bone mets on scans?
experience with pain from bone mets
