Started Xtandi a month ago after my PSA went to 8.3 almost a year after radiation and Lupron every three months also started casodex prior to Xtandi. Had second opinion from another Oncologist and said this was the right course to take and suggested have PSA in a month. Had PSA last week and PSA has risen to 12.3 also was scheduled for a bone biopsy on Tuesday to rule out being some other cancer causing lesion on hip. My question I would seem to think that the Xtandi not doing its job other than side effects and do I really need a bone biopsy to rule out something else out when PSA rising would think this is prostate. Is 1 month enough time to have the Xtandi start working or not and does Zytiga would if Xtandi fails. Have not been able to talk to Doctor because of weekend in sort of a panic to as if I am running out of options. Any input would be appreciated from anyone experiencing a similiar situation.
Xtandi not working?: Started Xtandi a... - Advanced Prostate...
Xtandi not working?
Many men who respond well to Xtandi do so within the first 2-3 months. Maybe wait a couple of more months just to be sure? As for the biopsy, despite the slim chance of finding some other type of cancer besides prostate cancer, it will give you the benefit of another look at a pathology lab report on the nature of that particular "met", and also could provide a tissue sample that could be sent off for somatic genetic testing of the cancer tissue, itself, to see if you might have one of the rare genetic mutations (e.g. a BRCA gene mutation), which might change your treatment options.
I'd discuss it with my doctor. Perhaps ask about a possible order for genetic testing for the harvested biopsy tissue at places like Foundation One, or Tempus Labs, or a comparable Cancer Genetic Testing Panel at a nearby large research university site.
Good Luck!
I know. "Prostate Specific Anxiety" is indeed tough sometimes. Remember, the thing being treated is your actual prostate cancer and its progression, not the PSA "number", itself. Imaging, blood work, symptoms, ... all are considered together as we approach every treatment change decision.
Charles
They are in the process of doing a DNA test on the original biopsy just concerned that if I don't do something else quick this will get out of control soon.
I'm guessing that the main reason he wants to biopsy your hip lesion is because it didn't shrink after you started on Lupron or added Xtandi. There could be a number of possible reasons:
1) the lesion is not a metastasis
2) the lesion is not a prostate cancer metastasis
3) the lesion is a kind of prostate cancer that is unresponsive to hormone therapy
It is important to know which of those possibilities is true because the next therapy they try depends on the answer.
The pathologist will, first of all, look at the cells to see if they exhibit any distinctive characteristics. He will also stain the cells with a number of antibody stains (this is called immunohistochemistry (IHC)) that will show whether it exhibits the proteins that are characteristic of normal acinar adenocarcinoma prostate cancer, or some of the rarer varieties. Ask your oncologist to ask the pathologist to also stain for the androgen receptor, PSA, PSMA, DLL3, and somatostatin if there is enough tissue and he has those stains. They are not commonly stained for, but may turn out to be useful.
Your PSA is only one biomarker of whether Xtandi is working. He should also be measuring bone alkaline phosphatase, LDH, and looking at the size and number of new lesions. If Xtandi is not working, consider docetaxel next. Sometimes Zytiga is more effective when used after docetaxel.
Did test the Alkaline alkaline phosphatase and it had gone up to 305 from 129 in 12-19 . the lesion did not shrink on Lupron and they told me they pretty sure this is prostate cancer but since I had kidney cancer 17 years ago they just wanted to rule out it. I would think since the PSA has risen from 1.00 after radiation to the prostate it seems to me that the likely source is prostate . They are in the process of doing a DNA test on the original biopsy. Just guess I am in a panick mode since they kept telling me that Xtandi should really work in stopping the spread , have one lesion which was there when I was first diagnosed but was just ignored until now. It is about 3 inches and two very small lesions that weren't there before. My mind is all over the place thinking that I do not have a lot more options since this seems to be not working.
Is that bone alkaline phosphatase? After the biopsy results come in, you will know more. It's not something you can know from just thinking about it. Whatever it is, you can deal with it then.
Hello,
I would consider dropping the Casodex (bicalutamide) before dropping the Xtandi (enzalutamide). My oncologist took me off Casodex three years ago when my PSA started climbing. He felt that sometimes Casodex stops working after a certain period of time and actually starts to encourage the PCa rather than discourage it. Remember that Casodex and Xtandi are both part of the same family (the lutamides). The only thing is Enza is ten times as strong as little brother Bi. Sure enough, my PSA dropped as soon as I stopped taking Casodex. I continue to take Enzalutamide. Currently, my PSA is next to undetectable. I have been on Enzalutamide now for three years! Hope that helps.
I stopped the casodex shortly after I started the Xtandi. How did it take for the Xtandi to start working?I have been on it for just a month.
Hello,
In my case, I saw a difference in a month. Slow but steady drop in PSA. Hope that helps.
I have been on it for a fews days shy of a month. Oncologist told me today it may have not started working yet and I might have had a flare prior to starting Xtandi. Do you have any side effects? I am dealing with muscle pain and bone pain.
Hello,
Loss of body hair, loss of libido, shrivelled pecker, lack of strength. Those are the main ones but hey I am still alive. I am fortunate to have a loving wife, four super grandchildren, many friends, and a positive attitude so I am not worried. When I was working one of my colleagues had a sign in his room stating: Rule 1, Don't sweat the small stuff and Rule2, It's all small stuff! Hope that helps.
Thanks for your input . I saw your profile which gives me hope part of my problem is that I am so tested out ,Doctors visits and test results that keep changing. When I was on the Lupron injections I adjusted to hot flashes initially but they seemed to subside, but when I had the PSA increase that's when the whole nightmare of test after test being told we cant cure you( which I assumed because of the lesions that are on my pelvis which I am having a bone biopsy tomorrow to determine what they are ). My Gleason score was 8 and I had surgery(1-19) but it was aborted because my prostate was so large 113 grams . The surgeon did not want run the risk of damaging my rectum.They removed the lymph nodes which were all clear psa went from 12 to 1 on casodex for 1 mo then 5 weeks of radiation and everything stayed fine until this year psa started rising. So it is playing with my mind right now wish I could have your attitude but all I think about is this going to be a short journey even though I read all kind of posts of other doing fine 4-5 years out with higher numbers than me. Just have this mental block because I went through kidney cancer in 2003 and then thyroid cancer in 2004 and have been continuously testing for those for the last 17 years. And every test brings the anxiety of what are they going to find next. Thanks again for your encouragement.
how long after you stopped the casodex until you had blood test . Mine was 3 weeks off and 28 days on xtandi. I see numerous posts stating that I haven't given the xtandi enough time to work.
Hi Scootman,
Must have been only a few weeks because my oncologist watches me like a hawk and I get a blood test for PSA and testosterone every month. I have had over 80 since diagnosis (seven years ago). I think I might have mentioned my PSA was a little under 1700 at diagnosis in May, 2013. Strangely, having frequent lab tests calms my anxiety level rather than increases it. Hope that helps!
Have you had any imaging done to see if there has been progression?
In general, you'd want to stay on your current treatment if you are not progressing even though you had a rise in PSA. I would agree with Charles about staying the course a bit longer.
In the meantime, I'd have imaging done and I think getting a biopsy of whatever new mets may be there is a good idea. I would want to try to see what's going on with the cancer as far as mutations and possible development of neuroendocrine PCa. That information could help to guide your treatment if Xtandi ends up becoming ineffective.
Have had imaging done and just bone biopsy on tuesday nervously await results and awaiting dna results .Not sure there are a lot of treatments Doctors keep telling me lets just see what happens with next
psa test. Just concerned if nothing is working how fast is this progressing. Always been impatient and want something taken care of now.
Did have MRI ,CT scan and bone scan prior to lab work. Was wondering if it is to soon for Xtandi to be working. Just concerned if I have many other options what is growing if truly the Xtabndi is not working.
When your Alkaline Phosphatase was 305, what was the PSA?
12.3 Spoke with Oncologist this morning and he stated that the Xtandi and casodex I was on initially might of caused a flare and wants to do another PSA at the end of May. Stated that in the drug trials that they did not measure PSA for three months.
Drugs like Cosadex ( bicalutamide ), Xtandi, ( enzalutamide ), and Zytiga, ( arbiterone ) are added to ADT to extend the effect of slowing down rate of Pca growth. They often don't work for more than 12 months, and Tall Allen sums up what might be going on and next normal mainstream action is Docetaxel, ( chemo ).
But after my Psa went up after Zytiga worked for 8 months, I had chemo, which was deemed to be a failure after 4 infusions, I booked in to get Lu177, which gave a better result.
Psa is now rising again, so maybe I get more Lu177.
What happens will be determined by what PsM Ga68 PET/CT scans show soon.
Patrick Turner.
Suggest getting GA-68 PSMA-CT scan as it shows prostate cancer when standard CT and MRI shows nothing.
My PSA after surgery was 12.4 and both standard scans showed nothing. I had a PSMA scan in Berlin and identified two small cancer lesions in lower abdomen.
Had radiation and been on Estrogen patches for two years now and PSA is <.008 and Tesosterone is <.001
Best of luck.
Maybe you're doing too much of the -lutimides. Casodex and xtandi are in this category. Maybe you should try abiraterone.
Whoa there Nellie. Sounds like you've been through the grinder. My highest psa was 59.9 After 3 years of lupron, chemo and xtandi it is now 0.1 and has been for about a year. A very gradual decline in psa. Extensive bone mets stable, lymph node mets "cured". Xtandi for 31 months now. Give it a chance. Nothing will happen overnight. Relax. Netflix and popcorn is the best advice I can give you. Which is why no one listens to me. Best of wishes.
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