I have been battling for 5+ years since diagnosis with PSA=29 and Gleason=10. Was metastatic to many lymph nodes at diagnosis, so neither surgery or radiation. Drugs and Dr. Myers have kept me alive.
Now on chemo with Docetaxel and Carboplatin since liver MRI and CT guided liver biopsy confirmed prostate cancer has found a new home in my liver. Tissue sent to Foundation Medicine for analysis.
Any one out there been down this road? Med Onc says, with treatment, I will live 12 months, but I am not average!
Never Give In.
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vandy69
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I also have liver mets after 6 months on cabazetaxel/carboplatin. I have no other approved treatments available to me. So, I investigated clinical trials and hope to be starting one in Houston at Excel Diagnostics, Lutetium-177 (Lu177) Prostate-Specific Antigen (PSMA)-Directed EndoRadiotherapy. Here is the link to the trial on clinicaltrials.gov:
Hello! I know it has been 8 months since this post. Just wondering if you were able to get into the trial? If so what have your results been from it? We are looking to try to get my father into a trial.
It was sfboy58 going into trial, not me. I have a miracle anyway with Xtandi working for a second time after failure in 2015-16. Chemo reset AR7-Splice Variant, and PSA stable at .7 for 3 months and liver mets smaller and less distinct!
You can beat that prognosis, I was given a year, 11.5 yrs ago, BPSA148, also GS10 see my profile for stats at dx. See this article on cancer statistics phoenix5.org/articles/Gould...
68, I have had Stage 4 metastates for 5 1/2 years, Gleason 9, PSA 14.5, numerous spinal and pelvic bone mets. Liver Mets started about 9 months ago, Started Docetaxel and carboplatin in late May, 7 cycles, PSA gas dropped from 42 to 0.43, Liver enzymes are much better, AST and ALT close to normal range. I had two lymphs which have shrunk to not observable, since May. Had Foundation One Biopsy a year ago on spinal mets. Did identify anything treatable. I get next round of chemo on the 17th, with a stretch out to 4 weeks from 3 weeks, due to side effects, mostly fatigue. I hope to get to ten rounds(?). Next option would be the Lu-177 PSMA trial mentioned below, but I don't see any US trials starting on the East Coast for at least 6 -9 months.
My husband is on Carbo Platin because liver mets were discovered in June of this year. Docetaxol didn't seem to have much effect on its own, so now he is on Carbo Platin, and, although his liver markers are still far from the normal range, they are improving all the time.
Our oncologist didn't say anything about how long my husband might have on this treatment. And I don't think anyone should say such a thing. Because nobody knows.
My aunt, for example, who is a doctor as well says that she has seen people live with this diagnosis for a good few years.
As many of you know, we have investigated LU177 a lot at the beginning of this year and, since I am German myself, it was easy for me to get talking with doctors from different clinics.
They were all agreed that my husband should not really go for LU177 as it doesn't work so well on liver mets but works very well on bone mets.
For what it is worth, I asked Dr. Myers his opinion on LU177. He didn't seem too impressed with it. His issue with it was that while it seemed to work, its effect seemed to be short term (1 to 2 years).
I guess that may or may not be an issue, depending on your particular circumstances.
One or two years sounds good if you have failed all other treatments. That is the case with me so I opted to do the LU177 trial in Houston. While it does poorly for liver mets, the PSMA scan showed a large PSMA uptake on my liver mets. So I may have good results.
Hi! I know it has been 8 months DJ ce this post, just wondering on a status update on your husband? My father just found out he has spots on his liver and we are debating our next plan.
I had 20+ liver mets discovered in 9/2017 and Docetaxel/Carboplatin chemo for 6 cycles which brought down PSA and made liver mets smaller and less distinct.
Dr. Nutting in Denver has done this procedure for many years, I spoke with his nurse about the possibility of my father having the procedure, she said Medicare and most insurance would pay, regardless of the cancer type.
Hard to find any studies of Pca with Sir-Spheres, has anyone tried this treatment? As MelaniePaul alluded to above, the case studies involving LU177 has shown it has done poorly in patients with liver mets, but the studies so far have been few and have involved a small number of patients.
Hello vandy69, So very proud and happy for your positive attitude! That makes a world of difference in those like yourself and those who just accept "it is what it is." You, my dear friend, are definitely not the average!!! It was 2 yrs ago this week-end that the battle ended. We were also told 12 months from Oct. 2014, and it was about exactly that. But, you are much more active in your battle, I saw that right from the start, than in our situation. Made me quite angry, to be honest, but you (I) could only do so much to help, before they (he) became resentful towards you (me). I so wish you had some comforting words for me, rather than my live each day wondering what would he have rather my do or say that would have pleased him in a better way. I hurt so badly that he closed down against me. He had become so bitter, angry, and withdrawn. . . . not at all like himself. Please don't do that. I love seeing your "keep fighting" motto. You CAN make this happen, vandy69!!! Don't quit!!! Don't accept "it is what is it". Fight, do not give in, keep on keeping on. I am praying for you and your strength and perseverence!
I myself am guilty of takin it out on my spouse. Incredibly cruel for the one that loves you. I’m sorry that you went through this. Because of your words hitting home. I’m not going to go into that angry bitter. mess That anger can kill us. It was the disease ..Like you said ,it was was not him. The fact that you are here offering help to others ,holds a lot of weight for me. It tells me that you did all that you could. We all try to give it our best I’m sure that you did. Quit kicking yourself over the past. I dwell on all of my mistakes in life including not going to a doc until I was Stage #4. As we all know now PC caught early is is very treatable and containable usually. Stage 4 , not so .easy.Enjoy your life without regrets. Anybody that can do that is my hero You went through hell. You deserve happiness.
I appreciate your understanding, Lulu700. You spoke volumes of compassion towards all caregivers. I feel I can speak for many spouses on how comforting your words are, especially in light of remembering "It was not him." Thank you, and may you feel the love that your spouse holds in her heart for you at this point in time. God bless you and your family.
I have been reading that PARP ALONG WITH Zitiga has a big effect on Pca whereever it is in the body. Also, BAT after castrate resistant makes the cancer responsive to ADT again. both are good and can likely be done at the same time. BAT has little if any side effects and is very effective
Thanks for the reply. I used Zytiga for over 1 year back in 2012 and the PARP inhibitor, Lynparza, for 9 months recently. As current drugs are no longer effective, chemo is the tool of choice.
My PC metastesized to liver, lungs, and bones about one year ago. I began Chemo ( Docetaxel + Carboplatin) in December 2016. I recently completed my 13th infusion. Scans indicate the cancer is contained. Blood works indicate that PSA and other markers seem to also be controlled. PSA went down from a high of 25 to 0.42 . My onc at MSK indicates that I will be on Chemo + ADT for as long as it works. MSK analysis of my liver PC DNA revealed nothing actionable.
Hard to tell what is happening to me. I developed some unknown growth in the lungs which may be an infection but not sure of that. I also developed Deep Vein Thrombosis (DVT) which is treated with Lovenox. I also started XGEVA for the bones but then developed a spinal fracture. Did any of this have anything to do with the Chemo? They all indicate that you need to get quarterly scans and keep track of what is happening in your body.
I think the Chemo itself has gotten easier and I am looking forward to my 14th infusion next week. I do recognize that I am not a young buck anymore and I need to take it slowly for that is my new normal.
I told my Dr. that I am looking for another dozen years with the Chemo and that would mean I just need about 200 more infusions. That would bring me to 85. He said why not.
I wish you well with the Chemo. You should have many good years ahead.
When you here that , it’s devastating. Don’t listen to that 12 months. You can live longer. Don’t give up. This is our ultimate test. I’m praying for you to prevail this beast.
Did you look into the Bipolar androgen therapy (BAT) and re sensitize the cancer to adt/Zitega and PARP -- there are several videos on youtube by Dr. Denmeade that describe the treatment -- it is very simple and few side effects if any -- it could likely be done along with the chemo.
I suppose you tried bipolar like Dr. Denmeade is doing -- it is not just high dose T. If you tried BAT before castrate resistant it probably doesn't work.
good luck Vandy, I am battling this cancer to for six years now, I have little spots all over my body skull, ribs, spine, lymph nodes etc so it is chemo for me, cant do radiation because its all over me
anyway I bid you well sir, it is good to talk to someone about these issues, let it out.
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