New Mets- Not good News

Not the news we were praying for😕 my fathers CT scan after 3 rounds of Jevtana and carboplatin to treat NEPC in the lymph nodes, we were hoping that the scans show shrinkage of nodes. Instead the CT scan showed multiple Mets to spine and pelvic bones(all new). His lymph nodes are somewhat stable and have only grown minimally and no new nodes.. again I guess that the chemo is keeping it from an explosion of Mets but not really taking it away.

His MO is notable especially for her research in prostate Cancer. But... she said his case “unusual”. What does that mean? I asked her about what are the options, she quickly mentioned immunotherapy, CAR-T, PARP inhibitors, and then keytruda. But first before we start I asked if a biopsy can be done to check his genes instead of using tissue from his is prostatectomy in 2014. I don’t understand why she doesn’t recommend these things and stick to a plan.. I feel rushed with her appointment and we are asking “too many questions” she even mentioned that she missed a phone meeting. I am beginning to want a second opinion on what steps to take next. I am not second-guessing her treatment plan but I feel like her treatment plan starts when were sitting there in the office asking her all of these questions. I don’t feel that she has a plan for my father. At end of her appointment she said that we would schedule a biopsy send it in for gene testing and then possibly start iimmunotherapywith keytruda if his cells show instability. Mention qualifying for the use of this for prostate cancer. What are your recommendations we live in Los Angeles and prefer to stay out here. Dr. Sholz not except Medicare or Medi-Cal even cash payments for a consultation is not excepted. I’m looking for a second opinion and possibly if the treatment plan is more define then we might change our MO. We just need to find somebody that will except Medicare Medi-Cal and that those of you out there have had experience and definitely recommend. I want to reach out to all of you and thank you so much for all of your input. My prayers are with each and everyone of you and your caregivers,wives, and children.🙏🏻👍🏻

My fathers latest results are-

Chromogranin did decrease from 409 to 385 but PSA increased from 18.3 to 21.6. So chemo is keeping it stable kind of??? Not sure really...

44 Replies

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Tall_Allen

6 months ago

I think your MO's assessment was pretty accurate for standard of care. He obviously has a mixed type - both acinar adenocarcinoma and neuroendocrine (thus, both Jevtana and Carboplatin). There are a number of clinical trials:

pcnrv.blogspot.com/2016/12/...

Testing blood for germline genetic mutations isn't likely to yield much. But there may be something to gain by testing a biopsied tumor. A pathological analysis can tell you if it has somatostatin receptors (see article), and a genetic analysis can tell you if it has the MSI-Hi/dMMR mutation (in which case Keytruda is helpful and FDA approved) or DNA-repair defects (in which case a PARP inhibitor may be helpful on a clinical trial). It isn't clear whether a PARP inhibitor is any more effective than carboplatin, however, and it can have high toxicity.

In the LA area there are two MOs I would recommend:

• Tanya Dorff, now at City of Hope. In fact, if you can get out to Westlake Village tomorrow morning, she is giving a talk. She's been working on the CAR T trial at COH. Here are the details:

Sat, March 17

10:30am-12:30pm

Cancer Support Community

530 Hampshire Rd.

Westlake Village, CA 91361

• Matthew Rettig at UCLA.

uclahealth.org/matthew-rettig

You have to stick to the very large cancer centers -- COH, UCLA, USC, Cedars-Sinai -- because your father has a rare kind of cancer and cases are more likely to have been seen at the highest volume hospitals.

Daddysdaughter

in reply to Lulu700

Lulu700 we are all afraid, but at the same time grateful that there are options if you are strong enough and if you can take it. Thank you for your kind words, I know we are so lucky to be close to our father. We are just 2 sisters that try our best to do whatever we can for our parents. They did this for us growing up, we could never let them down. My concern for my father is just as much as my own children. We spend as much time together, travel, and enjoy life to the fullest because we don’t know how long we have. My father is a strong man and In my heart I know he has many years but I don’t know how many without symptoms... so like I tell my father, I share with you, don’t be mad, or sad, enjoy every moment and don’t waste a day. I am here with you Lulu700, If you need anything I’m just a text away. I’m sorry about your relationship with your daughter, i hope that you can read the posts from all of the wives and caretakers and know that the only reason we ask and share this is to provide the knowledge to all. We want the best for all of the people suffering from this terrible disease. Hugs and prayers to you. Have a blessed and wonderful Sunday.

Lulu700

in reply to Daddysdaughter

Daddy’sdaughter and a sister .He is blessed with you two. No matter what. You are right Without symptoms is a goal. As you know the side effects can be hard even for a much younger man . So it’s not an easy road. I’m at peace with my daughter.Ididnt raise her against my wishes didn’t have contact until she was a teen .Then she was already formed by her granddad that hates me because I’m white and he is black. Racism ,I wasn’t raised that way, clearly. She attempted to derail my relationship with my own mother and my new wife. I would not allow that either.I love her she’s 38 now, not a kid anymore .She can at anytime come in peace. But she’d need to sincerely apologize to my wife and she can’t .Cut off her nose to spight her face. I’m content with my life, sure things could always better .But also things can can also get worse. Make the most of today. Thank you for your kindness.. another quality that you possess.

in reply to Tall_Allen

Talk Allen thank you really for all of your replies! You are so knowledgeable and I appreciate you helping me understand more about my fathers cancer progression. We unfortunately didn’t make it yesterday tonWestlake village but I will sign up so that my father and I can attend.

You had mentioned before about 213Bi-DOTOTOC. How do we know which treatment to look into ? 213Bi-DOTOTOC, CART, or Keytruda? Can we find out the answer with just a biopsy? Or should I take my father elsewhere to get a special scan or a different test?

I’m glad there are so many various treatments that can possible help but I just don’t know about which one. As far as trials, I look under the trial links that are posted and Sometimes they are ongoing so do they accept new patients? I just want to get my father treated with the best available option for him. If it’s a trial or going to Germany whatever it takes I just want to make sure it is the Best choice to extend his life. We are by no means looking for a “cure” at this point just extending his life with quality. He is tolerating chemo with minimal SE, I just don’t think it’s keeping the cancer stable enough.

Thank you again! 🤗

I have to thank you so much for giving me the idea of emailing her. She is absolutely fantastic on email. Replies are almost within the hour. So my father just had his biopsy today. We are still waiting for the Guardant 360 to be scheduled. I’m assuming he may not take the fifth round of chemo depending on what the results of his biopsy is. He keeps wanting to go to get another opinion at Sloan-Kettering in New York City. I’m not quite sure if that’s what we should do since Dr. Dorff has been his MO. I guess a second opinion possibly a different treatment plan maybe good idea to listen to. What do you think?? It’s so confusing what to do... he is also on vitamin D and calcium Dr Dorff Recommended that he also take lycopene. Any other recommendations? Thank you again for sharing your knowledge!

Yes, email is a godsend compared to phone tag.

Fortunately, CMS made a national coverage determination last week that at least some genetic profiles of tumors will be covered by Medicare.

cms.gov/medicare-coverage-d...

They specifically mentioned Foundation One CDx which is a biopsied tumor analysis. Guardant 360 is a blood analysis. Does Dr Dorff think it is as good?

For a second opinion, my top picks would be Celestia Higano at U.Washington- Seattle, Emmanuel Antonarakis at Johns Hopkins, Eleni Efstathiou at MD Anderson, or Oliver Sartor at Tulane. Unfortunately, Howard Scher at MSKCC is no longer seeing patients, but Philip Kantoff or Michael Morris are also very good.

If he is taking Zometa or Xgeva for bone loss, he should consider adding Celebrex. I am agnostic on lycopene, but if he's going to take it, tomato sauce is more bioavailable than pills. I think sulforaphane (60 mg/day) looks good, but get the kind that is cold-extracted from broccoli seeds or sprouts. I'm not a big fan of supplements. I regard them as drugs. I would not take any that have not been proven safe and effective in randomized clinical trials. But I do sympathize with the need to want to do something to give oneself more of a feeling of control.

Dorff initially recommended we do just biopsy. After some discussion she said the biopsy and the Guardant 360 just in case the biopsy is inconclusive. She didn’t recommend any medication. Should I ask if he should start on Zometa or Xgeva? Isn’t that something she should recommend? My father only takes calcium, D3, vitamin C and curcumin. He grows his own tomatoes that are high in lycopene. I will look into the sulforaphane. So you do recommend getting a second opinion at one of he above facilities? My father also goes to Mayo every 3mo for PET c-11 scans with Dr. Kwon. We followed his recommendations on the chemo based on the results of he scan. I did update him on the new Mets. His PA said let us know what the next treatment will be and then he can go back to be rescanned after he begins 1-2mo.

Most men who are permanently taking Lupron or the like should have their bone density monitored and should take a bone-sparing agent (unless they have dental issues).

Why is he taking any of those supplements? Does he have diagnosed deficiencies? Calcium and Vitamins D3 and C in very high doses may enable the cancer, so be sure he doesn't take any more than needed. See:

cebp.aacrjournals.org/conte...

ncbi.nlm.nih.gov/pmc/articl...

rsob.royalsocietypublishing... (Section 22)

Curcumin (even with piperine to get past the intestines) is almost entirely eliminated by first pass metabolism by the liver. But if popping pills makes him happy, why not?

What is the point of going to Mayo every 3 months for an outdated scan with no evidence of benefit, other than to make Dr Kwon and Mayo richer?

ronnie1943

Hi, I know every persons cancer is unique to them , but I feel like your Dad and my husband are maybe at the same place. Long story, but Sam my husband after this past Christmas had surgery and they took out one of the lymph nodes. Waited a month for biopsy results. Sam did not qualify for Keytruda, we were disappointed, our oncologist wanted that for Sam. Right now we are waiting to see if Sam qualifies for a finicial help for a drug called Cabozantinib. It's just been FDA approved and is targeted therapy drug. I did read up on Keytruda and this targeted therapy drug and they are saying that both are a game changer for PC, I'm with you, I am Praying so hard for you, your Dad, my husband and all who suffer from this from any cancer. Please keep me posted and all of us. Oh, want to mention that Sam' s cancer started at age 65, he is now 74 young. This past year the cancer came back with a vengeance.

Prayers and hugs coming your way. 🙏🏻

Sincerely, Lynn.Pa

in reply to ronnie1943

Hi Lynn thank you for sharing Sams history. So he has the beast of NEPC? Did he also have surgery, radiation, ADT and try Xtandi and chemo and failed all? My goodness if that’s so yes sounds like your hubby and my father are in very similar situations. I am glad that we have this site to share our experiences and learn from one another. Does your husband have Mets to bones or only in nodes? How long did he have a break for before it came back? Did he do chemo? Carboplatin? Did you ever consider any of these other treatments CART, Lu-177, or the 213Bi-DOTOTOC? We all need this game changer it’s just trying to figure out what’s the next game plan. I’m glad that there are many options and we are lucky that new treatments are being identified frequently. I’m with you as well, I will keep you posted, and you as well let me know. Prayers, Hugs, and lots of strength to all of those fighting this and caring for our loved ones. ❤️

Hi, It's a really long story, Sam was Dx at age 65. Had huge tumor in left arm from his shoulder to almost his elbow and many bone mets. Psa 423. Surgery and surgeons name Surgeon from Jefferson in Phila. saved his arm. Six weeks radaition on arm and hip, he was also having trouble walking .from the tumors on his hip. after radaition Sam was put on casodex and hormone needle. Went nine years until this past summer the cancer came back with a vengeance, tumor blocked kidney tubes, went into kidney failure. Had nerostomey tubes for Isix months, after more getting radation again. , tumor shrunk and Sam was able to urenate on his own so they were able to have the tubes removed. While going through radaition Sam was also getting twelve months of taxotere. After chemo, two months PSA began to double fast. He was Put on Zytiga didn't work Sam had Zytaga and Xtandi before and it didn't work. Scan found cancerous LN's this past Christmas. Had biopsy, waited a month for results. Sam has had all of the above treatments you mentioned and all have failed, Sam has bone mets and cancerous lymph nodes as your Dad I do know of the Lu 177 etc, a dr. From Fla, told me about them, he himself went to Germany for the Lu177, have not heard from him, I think he's doing well. He had been on this site ??

Well, we are waiting now to see if Sam qualifies for some financial help. For the targeted therapy drug. It's pill form. 🙏🏻 we figured that it would cost a half a million a year!!

Thank you for your supports d the information, I'm going to ask the oncologist about them. This thing with the mutations to,see if you qualify, Sam, did not qualify for Keytruda. 😪 So sorry for the long email, I'm on pins and needles!! Please keep in touch, and I thank you so much for the support.

Let me and others know what treatment your Dad is going to do??

Hugs and prayers coming your way and strength for you too, us care givers need to stay strong, it's hard at times.😪

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