Hi Everyone,
Between April and early July, my PSA doubled three times. Lupron gave up. It was 29 the week I started Xofigo. That was July 20, my most recent lab work it's 6. T=0. But, that was a quick response I believe.
Has anyone else seen such a drop, in such a short period of time? I'm amazed, but I'm also curious.
Peace All, Joe
Awesome Joe!
Congratulations! I had a similar turnaround---at diagnosis, my PSA was 744. After about three months, it was down below 15.
And before long I expect another turnaround, although unfortunately in the other direction.........cest la vie.
CERICWIN
Hi Eric.. How long have you been on it Xofigo? That's a huge drop. What do they think is causing such radical drops if it's meant for mets and bone? Keep it up.. you deserve it... genie
I'm not on Xofigo, I'm on Xtandi and Xgeva. My bone mets aren't extensive, but are located in places which cause a lot of pain, and at least the pain is controlled by extended release morphine and Dilaudid for the breakthrough pain.
I'm doing okay, just a few new lymph gland mets, and a few other problems.
Thank you for your concern and kind words,
Eric
While a very good news, Xofigo is prescribed for pain not to reduce PSA. In my case my PSA actually went up and had soft tissue growth problems. Radiation to the rescue!
Sorry All,
This was a case of dyslexic typing. I was thinking Zytiga, and typed Xofigo.
This is gonna get me in trouble.
Joe
Mahariff,, can you clarify when you say , radiation to the rescue. Has it relieved pain? What do you mean by soft tissue problems and how did it 'rescue', unless that was tongue' 'n cheek. Thanks.
Sure, in the past two cases, when my PSA goes up, I end up having small cancerous growth on my spine, T2 & T3, sometimes pushing on sciatic nerves, causing lots of pain. Radiation eliminates the growth, thus pain.
-Mike
I was under some crazy assumption that it is the lumbar vertebrae pushing on sciatic nerves, that causes sciatica in the hips and down the legs. Can you, or anyone else add to my information about any other vertebral pain? I thought thoracic or cervical causes another type of nerve pain-
Thanks Mike for responding...
genie
Yes I believe you are correct I think it is generally the lumbar vertebrae that interfere with the sciatic nerve.
However palliative radiation can help this as well. I have had palliative radiation on my thoracic spine which helped with pain in my mid back and ribs.
In addition to palliative radiation, I have had nerve ablation to relieve pain in my arms caused by nerve issues in my cervical spine.
Radiation and pain management specialist treat me in this regard in consultation with my medical oncologist.
I hope this helps. I am not an expert this is only my experiences and limited understanding of a complex system.
Bill Manning
Bill, thanks. We don't have to be experts. We are living these experiences, that good enough for me. I don't know what I would do without the sharing of experiences.
How has the thoracic radiation worked. Has it relieved all pain in that area.
I've not heard of pain ablation.
I'm surprised our oncologist hasn't referred us to pain management.
Yes the radiation to my thoracic spine worked well for about a year. My disease is progressing and I now have a more diffuse pain throughout my spine, hips, chest etc.
I'm sorry to hear about the pain. In our world time is a gift. A year can be a gift. Others that I've spoken to want complete success. Succes is measured a bit differently dealing with this.
Thank you for sharing.
No problem. The year in my opinion was a great success. I am pretty late stage as I have been through all the currently available treatment protocols so just to have some pain relief and being able to do some things is a gift.
Thanks and good luck.
Remember also your body is amazing. We don't know the outcome of anything. No doc can tell us either- but, I will say, if you ask the question as what to do next and don't leave out body/mind type things, there may be more to do without efforting. We are staying open to the body/mind connection...
there is an amazing link put out ..
We believe in 'letting go' but not giving up...
here's an interesting link..
sciencedaily.com/releases/2...
I am sorry but I don't understand what you are try to express in your post.
While mouse models are interesting to look at, there have been many, many,many promising mouse results that have not corresponded to effective treatments in humans.
Thank you for the link.
I actually do believe that doctors can help us understand what is happening inside our bodies. They can also help with the symptoms and provide valuable assistance.
The eventually outcome to our journey in this life is death. We all die.
However each of us has our own journey and how we deal with our journey helps to defines us.
I have to apologize, I was thinking Zytiga, but I typed Xofigo. Sorry. Joe
Makes more sense. Still good news.
Ahh. I was wondering how that worked, Joe.
Congratulations on your improvement!
I say excellent Joe.
Lupron took me from 139 to 0.28 in a month. Now four months in it's still holding as far as I know. I too was amazed. MSKCC doctors don't get amazed but they said that was very good.
You too, VERY GOOD. Continued great luck to you.
Don
Here is my experience so far with Prostate Cancer. Has anyone had a similar experience ? I was diagnosis two years ago with prostrate cancer . I opted for 44 GPS targeted radiation treatments . Everything went well for about a year . PSA stayed below 1 . We stopped the Luprone . Then about a year ago the PSA shot up to 15 ! My Urlogist made me go for another biopsy and Cat Scan and bone scan . No cancer what found . But Doctor said it is there . But can't find it . Consequently if they can't find it they can't treat it . He is now leaning toward Lupbrone injections again . The doctor said he thinks the radiation didn't catch the cancer . And my PSA will probaly shoot up again. He is leaning toward Luprone inspections . However , I didn't like the effects of Luprone the first time . I will probaly take the Luprone but not happy about it . And should I also be taking something for bone density too ? What are my alternatives ? Is Any other drugs shoul I be considering.
Hi I am not sure where you live or where you are being treated.
My first suggestion is to find a good medical oncologist who specializes in prostate cancer. This is now past your urologist's area of expertise.
Second I would try and get one of the newer scans done. Actually, I would get an appointment with Dr. Busch in Chattanooga and have him do a multiparametric 3T MRI and consultant. I would also see about getting either a 68Ga PSMA PET/CT scan or a C-11 acetate scan. The idea here would be to see if they can see where the cancer may be. Then you may know more about what you are dealing with and plan out a treatment plan.
I am not an expert only a patient who has been through a lot of treatment. This is just my opinion on what I would do. These newer scans were not available when I had my first recurrence. I wish they had been.
I hope this helps.
Bill Manning
Thanks Bill , I appreciate your suggestion and input . I think I am going to travel to Chattanooga for a consultation and tests . Is that Dr Joe Busch on Mc Calle Ave tel # 423-622-7212 ? Than I will work on getting a doctors order. I feel like my Urlogist is leaving me in the dark here . He keeps saying I definitely have prostate cancer but he can't find it . I see where Dr Joe Busch has a good following ! Tks again Bill
My first psa after injection went from 67-87 ..next psa in sept second inj of xofigo next week ...I hope my drops like yours ...positive thoughts
Hi All.
Just an update: I started Zytiga a month ago with no side effects. I have a consult for starting Xofigo in two weeks. We went thru this already, but Xofigo is Radium-223, it's not for pain, but bone metastasis. I have three spots, maybe a couple more, but doc's want to be aggressive early. My friend Cathy is still hanging around. What a bitch! I see uro on Thursday afternoon. I'm not very enthusiastic about the prognosis. If I have to use a catheter for...let's not go there. It's a messed up situation.
It's taken this long to pass most of the clots and growths from my bladder. It is a pleasure to not pass blood, or have to irrigate my bladder, thru this cath. It is gross, ask my wife.
For those of you who face IMRT radiation, take heed. No one told me, and now I'm telling you, be expecting proctitis, and cystitis somewhere down the line. Both have whooped me for the past several months, and I didn't know what hit me. The problem with my bladder blockage was apparently clots, and a lot of them.
I dropped the ball on my care. Don't you.
Peace, Joe
So sorry Joe. Healing thoughts. I think Radium 223 helped my husband a lot.
Peace,
Jackie
That is awesome Joe , I am happy for you! Is it only Lupron and zytiga that you were doing?Congatulations
Thanks Dan. Now, I'm on Lupron full time. I started Zytiga last month. I'm starting the Xofigo for the few mets I have. Now, I don't know what the protocol is for the Xofigo, but my docs say hit it now before it gets too bad. I don't have any pain in my spine or hip, so I'm lucky on that end. To be quite honest, if it wasn't for the proctitis and cyctitis, I wouldn't know I had Pca. Except for the manopause part, I learned to live with that.
Peace, Joe
Joe , It was my understanding xofigo/ radium233 was just for bone pain and that once you use it can not be reused, for me anyway I chose to wait till I had bone pain to use it. In the old days we used zometa to maintain bone integrity when a patient had mets and I think the better time frame for lesser side effects was every 3 months according to Dr O Sartor when he was my Doctor years ago in Boston. after 3 or 4 years on zometa my bone mets really never grew much.
peace, Dan
Well, Dan, I'll find out on the 9th, when I see the radiation guy. My understanding is that the radium-223 is bone met specific. Actually, bone specific, since it does affect marrow. I have absolutely no bone pain. I think it's given once a month, for 5-6 months. I'll do a main post and see what everyone else says. Either way, my uro oncologist says to hit it now before it gets painful, I guess.
I'll tell you what, if it wasn't for the ADT side effects, I wouldn't had known I had Pca. Strange disease.
Joe
Hey Dan,
An update on this thread.
My Oncologist put a nix on the Xofigo, and instead, put me on Xgeva. The mets I have aren't painful, so he saw no reason to use it. The Xgeva helps with bone health. I just had my first shot, and happy I won't have the radium side effects.
Joe
sounds like a good idea to keep the radium in the back pocket as it is indicated for patients with pain, and I do not know much about biphsphonate xgeva , I always had zometa, though I hear it is new and improved biphos. what is your schedule every month or every three for xgeva?
It's a monthly shot, I'm not sure what the protocol is for how many treatments. I'm going to research zometa now.
Be careful to have regular dental cleaning with any bisphosphonate and I believe no extractions, I am bubbling over at the moment just got my monthly psa on my hospital site, which was surprisingly down last month, and now it is only up .5 , so I get another 5 weeks to enjoy the change of season, without starting chemo, wahoo. I know with zometa being so toxic with the possibility of osteonecrosis of the Jaw, we only did it every three months , not sure about xgeva, I think you mean a monthly infusion.
Dan
OK It's a lot of med in a syringe, injected slowly, hence, an infusion. I think. In the back of the arm, below the shoulder.
While on this subject, my prior uro fed me Lupron in the butt real fast. I was in pain for a week in that cheek. New guy did it real slow, and too low, maybe hit a nerve, but too much pain again, down the back of my thigh.
I could not believe you brought up dental health. I broke a tooth on a 100k bar recently. Too weird.
Joe
You should be ok getting a crown, I have had many , just no extractions, reading about xgeva it is not a bisphosphonate, though it says to be prudent with dental health, it is a monoclonal antibody, and that is a subcutaneous injection not a infusion it says, very interesting to find out about that one Joe, I think I would prefer xgeva to zometa for the same purpose
Dan
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