We are currently in Singapore for a second opinion at the National Cancer Center and fortunately, the MO qualified us for a free genetic testing and AR-V7 test for an ongoing research. Although it is not a clinical trial, we are still thankful that we got the tests for free.
Just a brief recap on my husband, he was diagnosed last yr at age 44, gleason 9 with several mets to lymph nodes and bones. Currently on zytiga, dexa, xgeva, eligard. Soon to start with docetaxel 6 cycles.
The MO here said he is most likely certain that my husband (Dondee) will come out positive for genetic mutation (BRCA2) due to his young age at diagnosis and early failure on zytiga (7months).
Now, I want to ask especially those who tested positive for genetic mutation like BRCA1/2 and/or their circulating tumor cells tested positive for AR-V7, what treatment/s worked for you? Is it true that the survival rate decreases for those who are positive as opposed to those who are negative? I really cried yesterday when I ask the onco how many years does my husband have if he tested positive in those tests and although hesitant he said that in most cases, 2-3yrs. When I heard that, my heart was torn into a million pieces as I cant imagine losing my husband that soon! My husband is a very positive person as you can see in the photos and he told me that he will prove that doctor wrong as he will survive for many many years. I am hoping that somebody out there can share positive stories even with the genetic mutations and ar-v7 and hopefully give me some hope. TIA.
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dvcarola2
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Sorry to hear about his prognosis. If he is positive for BRCA1/2, he can be treated with PARP inhibitors. Something he could discuss with his doctor if his tests indicate BRCA1/2 mutation. I think the move to chemotherapy is the right one.
Yes MO mentioned olaparib and carboplatin as some of the choices if tested positive. But what made me sad is when he said abt the 2-3 yrs survival rate for those who tested positive.
They are also testing a drug here in the US. called Niclosamide that may resensitize patients with ARV-7 to Xtandi or Zytiga. Here's a link to an article. ascopubs.org/doi/abs/10.120...
You can also search for more. This drug is not some new, expensive drug. It is already in use for tapeworms of all things so I would think it's available in most places. Something to discuss with his doctor.
I would wait for the results of the test. A young age does not mean there is a BRCA2 mutation. A failure of Zytiga after 7 months is possible without a BRCA2 mutation.
I cant help but worry because the doctor seemed very sure about the tests coming out positive. But yes you are right I maybe worrying for something that may or may not not happen.
Btw, as part of the research, they are testing some other 45 other mutations in addition to BRCA/1/2 like ATM, PTEN (those are the only ones I can remember).
The clinical significance of CTC is baffling. One test can produce cell free DNA ( cfDNA) and tumor DNA ( ctDNA . How do you know one from the other? And what different does it make treatment - wise ? Don’t you treat what you see the same way? And once you treat it , given the heterogeneity of the cancer and its mutability isn’t it just another version of cell type whack- a- mole?
Am I wrong that “ targeted therapies “ offer a false hope that one identifiable mutation for which there is now a countervailing medicine is curative? That you really have to kill the whole cellular structure, not just the mutants since the other non mutational cells can themselves mutate?
Cell free DNA is a mixture of the DNA from healthy cells and dead PC cells, so it doesn't distinguish somatic and germline. CTC is only from circulating tumor cells. They can separate the cells from the non-cellular DNA via centrifuge. No one is saying that any of the treatments are curative. The hope is that it is prognostic, and that tailored therapies (which currently include PARP inhibitors, platins and Keytruda, more in clinical trials) might extend survival.
Likely you have heard of Lu 177 that is being used in Germany and Australia, and now recruiting for USA trials. If not there are members within this group familiar with it and I believe some who have experienced it.
I myself failed Xtandi and have undergone AR-V7 test. Thankfully negative. Not to sure what that buys me,,,perhaps that Zytiga might be effectively whereas positive almost ensures will not.
I am aware too of trial at UC Davis where they hope that the tape worm drug will reverse a positive to a negative. Other trials the answers were problematic.
Interesting a top MO that practiced with Scholz and Leibovitz is now headquartered in Singapore as last I heard. Dr. Tucker is his name. Perhaps you might search him out while you are there.
The radiation in nuclear medicine can also be used as treatment when the cancer is deemed inoperable, such as in Lu177 PRRT (Peptide Receptor Radionuclide Therapy) for neuroendocrine tumours and Lu177- PSMA (Prostate Specific Membrane Antigen) for prostate cancer, explains Gabriel.
Yes Lu177 was also mentioned but didnt explore it yet coz Im assuming it would be very expensive especially here in Singapore. Although I have read a number of people who had very good results with it. I just hope that someday we may be able to afford it. I will have to sell our properties first and maybe sell my husband too 😁
Oh shoot we should have searched for that Dr Tucker sooner. We are leaving on Monday but will definitely look him up in case we come back here.
I love you guys, Dondee you got to accept me hugging you when we meet ok
I can't for the life of me how docs can say expectancy of life from PCa diagnosis. I'm going to seriously challenge this and stop useless crap from docs!
Was told, from my initial Oncologist, that I have 2 to 3 years of life left, fired! Then my new Dana-Farber Oncologist, told me, have no worries for at least 10 years forward.
You see, the docs have no idea, we're warriors, Dondee is my brother, looking forward to hug your family...
Awww thanks George. Dondee and I will give u big hug too so hoping to meet you soon.
I know I shouldnt listen to life expectancy given by that doctor but my emotions got the best of me the other day. But now, im feeling more positive thanks to you and to all our brothers here. Love you back brother. Stay positive!
Waiting to be tested myself, Don’t give up yet when I was diagnosed with Stage 4 they gave me a 50/50 chance of 5 years. Working on month 33 now . Not going to give up and let this monster take me. Love hard, play hard. Fight hard 😀😀😀🙏🙏🙏🙏🙏
With the current state of treatment available for PC, your doctor have not done much research treatment and probably have not done clinical study himself. Do not take his “2-3” years life expectancy seriously. He is most likely wrong, and if you can find a truly good PC research doctor, 10 years or more is not out of the question. My own PC oncologist is a researcher. Two+ years ago he had his own illness diagnosed with life expectancy of 1 year. He is still alive today and doing his own research on his disease. When he was first diagnosed, he said: “I can’t believe that the Onc he consulted are still treating patients with his disease using techniques he learned while he was still in med school.” He went on to develop his own treatment plan himself with the concurrence of other Oncologists. I can’t give you the details but I am certain that he does not leave stones unturned treatment wise to be where he is now.
Thank you for the positive encouragement and for sharing the story. I am happy to know that Pca is a very well studied disease. It somehow gives me some reassurance that there are a lot of treatment options out there.
I just hope though that there will be more and more clinical trials in Asian countries like ours to help people like us with expensive medications/treatments.
Wish our doctors were more like the Commander Data android character, I'm now on my 4th try with Onco docs. Still seeing my 3rd, he's cool, but think handicapped because of Dana-Farber's conservative rules. The Ivy-league docs are not the best, they're focused on useless papers, grants and tuition enrollment for their medical school.
I'm currently engaged with Dr Leibowitz's team (Dr Bob), they use proactive aggressive treatments up front. This team does not believe in waiting around for castrate resistant to settle in.
Unfortunately, we're living in the era of Onco docs that are lost in space, it's up to us...
I was diagnosed with PCa in 2010 and tumor samples tested a couple of years ago showed BRCA2 mutation. So that's about 9 years since Dx.
I've been accepted for a clinical trial consisting of two drugs, a checkpoint inhibitor (immunotherapy) and a PARP inhibitor. The combination of the two may give better results than either one separately, especially for those with that gene mutation.
Thanks Nal, im happy to know that you are doing so well despite of BRCA2. I will definitely would love to hear your suggestions if and when Dondee tested positive.
I do like "The doctor is wrong." Mine admitted she was wrong at 1st guess and added years to her 2nd guess. I'm still walking and talking. Amazing. Maybe a little early in the game to make predictions. Just love your smiles! Good luck.
Am sorry to hear the case of your husband. If it is any consolation to you I have been living with cancer for the last 12 years on ADT, so be positive. He has a long way to go. The doctors normally talk about averages. Listen to the views of many of the wise men here. There are many options for your husband in the future. By the way I am from Malaysia and am also interested in the genetic testing offered in Singapore. Can you share some details.
Glad you are on your 12th yr! I can refer you to our Sing doctors Dr Melvin Chua and Dr Ravi, hopefully they can also include u in a free genetic testing and free AR-V7 testing, you just need to pay for consultation. Lets see. Pls send me ur email address.
I have consulted Dr. Ravi previously. I will request for a new appointment to see him to see if I can do the tests. My numbers are not good so I need to see him. Anyway my e mail s_rassu@yahoo.com.sg. I live in Seremban and I suggest you husband join our support group based in KL to get more info and support for his condition. We have more than 200 members.
I've told this story before but I think it's appropriate to tell again.
I went to a gypsy fortune teller and when I knocked on her door, she said "Who is it? So I left.
Never ever go by the number of years that a doctor will quote you because the doctor is also a gypsy fortune teller. Dondee will be around for many many years. When my mahal kital Ana and I (a/k/a Badooie) visit the Pines again we hope to meet up with you guys.
As soon as my wife saw the street sign "orchard road" she said "that's in Singapore".... she's so smart, the only dumb thing she ever did was "to marry me".
Good luck magandang kalusugan at mabuting katatawanan.
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