Small Cell (neuroendocrine) cancer

Zeus240
Zeus240 Member Posts: 1
in Prostate Cancer #1

My dad 72 years old was recently diagnosed with Stage IV small cell neuroendocrine cancer (Gleason 5+5). He is currently undergoing standard first line platinum based chemotherapy along with hormone therapy (eligard). Given the poor prognosis for small cell prostate cancer we were looking for other alternate treatments out there besides chemotherapy and hormone therapy. Is there anyone else out there with a similar diagnosis? Would like to understand what treatment he may be receiving and how he is faring. Also I read on the internet about a stage II clinical trial for Aurora Kinase inhibitor that is being run across the country. Is anyone participating or has participated in that clinical trial so far? If so what was the outcome. Thank you in advance.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Strain

    Zeus,

    Neuroendocrine ("small cell") prostate cancer is very, very rare, and almost always very aggressive, as your dad's Gleason score indicates. Over 98% of prostate caners are Adenocarcinomas.  Chemo is in cases of Adenocarcinomas usually not employed until late Stage 4, and therefore almost never used as a first line treatment, but as you noted, it is first line with his type.

    Hopefully there are some former Neuroendocrine patients out there who can give feedback.  My suspicion is that you need to seek out a world-class oncologist who has experience with this strain of PCa.  Most likely have little familiarity with it.

    Good luck to you and your dad,

    max

  • myhusbandwife
    myhusbandwife Member Posts: 1
    #3
    Zeus,My husband was

    Zeus,

    My husband was diagnosed with small cell prostate cancer about 3 weeks ago. We are going to have second round fo chemo, etoposide and carboplatin, cisplatin later. Radiation down the road. He is also on Cosadex and Lupron, as his is mixed with adenocarcinoma. What makes me mad that doctors could not diagnose him since July, I am really mad at such kind of doctors. This kind of cancer grows fast. We lost so much time. He is 73y.o., lost about 35 pounds, muscle wasted, walks with walker, and he was always very healthy man.

    Our PCP talked to doctors at Hopkins and Cornell universities. Talked to lead investigator in Aurora kinase trial. They all agree with given protocol. Aurora Kinase trail didn't publish any stats yet, hower in private conversation .... numbers are not very exciting. My husband decided to stay with his medical oncologist and go through standard treatment, which they use to treat small cell lung cancer.

    I insisted to send his biopsy tissues to Caris labs, may be it will help to choose right chemo drugs down the road. 

    It's horrible type of tumor. My researches on line don't give any hope at all, if only miracle happens. I need to stay strong for him and be supportive.

     How is your dad doing? Have you found any specialist who would give any hope? Please share! 

    Anyone with any information about specialists anywhere in the world? Please help! 

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #4
    myhusbandwife said:

    Zeus,My husband was

    Zeus,

    My husband was diagnosed with small cell prostate cancer about 3 weeks ago. We are going to have second round fo chemo, etoposide and carboplatin, cisplatin later. Radiation down the road. He is also on Cosadex and Lupron, as his is mixed with adenocarcinoma. What makes me mad that doctors could not diagnose him since July, I am really mad at such kind of doctors. This kind of cancer grows fast. We lost so much time. He is 73y.o., lost about 35 pounds, muscle wasted, walks with walker, and he was always very healthy man.

    Our PCP talked to doctors at Hopkins and Cornell universities. Talked to lead investigator in Aurora kinase trial. They all agree with given protocol. Aurora Kinase trail didn't publish any stats yet, hower in private conversation .... numbers are not very exciting. My husband decided to stay with his medical oncologist and go through standard treatment, which they use to treat small cell lung cancer.

    I insisted to send his biopsy tissues to Caris labs, may be it will help to choose right chemo drugs down the road. 

    It's horrible type of tumor. My researches on line don't give any hope at all, if only miracle happens. I need to stay strong for him and be supportive.

     How is your dad doing? Have you found any specialist who would give any hope? Please share! 

    Anyone with any information about specialists anywhere in the world? Please help! 

    A Paper on scPCa by doctors atUniversity of Utah, Salt Lake City

    Zeus and Husband’sWife

    I am sorry for the cancer diagnosis of your dad and husband. I sense from your posts that both are well informed about the disease and its limits in treatment. Small cell prostate cancer (scPCa) typically coexists with the more traditional adenocarcinoma which seems to be your cases. Such requires care and treatment for both types. Gleason rates do not apply to small cell cancers and the PSA becomes unpractical to judge disease progression.
     The diagnosis of scPCa at an earlier stage of differentiation may be confused with the traditional adenocarcinoma if not properly stained, which could be the reason for the delay in the diagnosis of your husband. The typical adenocarcinoma usually forms a consistent tumour “hard” to be destroyed during the pathological analyses where small cell cancer easily breaks into pieces when disturbed.     Symptoms due to the cancer also appear when the disease is already in an advanced stage, therefore hard to treat.
     Supplements are not recommended because it may interact with the chemotherapy or prejudice its effects.

    Small cell PCa does not respond to hormonal manipulations but RT may be administered to localized spots if these are found in image exams. I would recommend you to read the document in this link that may help in your continued researches. Husband’sWife could try contacting the doctors listed (from University of Utah, Salt Lake City, UT) that were involved in the discussion and treatment of these cohort of patients;

    http://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CD0
    QFjABahUKEwiNrpfh1PjIAhXB0hoKHWSjA8Y&url=http%3A%2F%2Fjco.asco
    pubs.org%2Fcontent%2F26%2F7%2F1168.full.pdf&usg=AFQjCNGCU7QUKnVXulsaYub4
    Ngq5_Q_I2g&bvm=bv.106923889,d.d2s&cad=rjt

    www.jco.ascopubs.org/content/26/7/1168.full.pdf

    Best wishes and luck in your journeys.

    VGama

  • Bottfish
    Bottfish Member Posts: 1
    #5
    myhusbandwife said:

    Zeus,My husband was

    Zeus,

    My husband was diagnosed with small cell prostate cancer about 3 weeks ago. We are going to have second round fo chemo, etoposide and carboplatin, cisplatin later. Radiation down the road. He is also on Cosadex and Lupron, as his is mixed with adenocarcinoma. What makes me mad that doctors could not diagnose him since July, I am really mad at such kind of doctors. This kind of cancer grows fast. We lost so much time. He is 73y.o., lost about 35 pounds, muscle wasted, walks with walker, and he was always very healthy man.

    Our PCP talked to doctors at Hopkins and Cornell universities. Talked to lead investigator in Aurora kinase trial. They all agree with given protocol. Aurora Kinase trail didn't publish any stats yet, hower in private conversation .... numbers are not very exciting. My husband decided to stay with his medical oncologist and go through standard treatment, which they use to treat small cell lung cancer.

    I insisted to send his biopsy tissues to Caris labs, may be it will help to choose right chemo drugs down the road. 

    It's horrible type of tumor. My researches on line don't give any hope at all, if only miracle happens. I need to stay strong for him and be supportive.

     How is your dad doing? Have you found any specialist who would give any hope? Please share! 

    Anyone with any information about specialists anywhere in the world? Please help! 

    My Neuroendocrine prostate cancer

    So sorry to read about your husband and wish there was more that could be done.

    I too have been frustrated at finding others who have small cell (neuroendocrine prostate cancer) and what they have done for treatment.

    My story is that in 9/2013 (age 76) I was diagnosed with prostate cancer (adenocarcinoma - Gleason 9) with focal neuroendocrine differentiation. At the time I felt fine and my PSA over the prior couple of years had been averaging 2.5 - 3.0. During my annual physical my doctor felt a protrusion on my prostate and sent me for an ultrasound which confirmed what he had found. 

    I had a prostate biopsy with the results as described above. The urologist immediately sent me to a medical oncologist who explained that what I had was very similar to small cell cancer and my treatment needed to start with chemotherapy.  I conferred with Moffitt Cancer Center in Tampa FL and they agreed that I should immediately have 3 rounds of docetaxel and carboplatin. They said they would not remove my prostate as there would be too much negative margin.  I was also started on Lupron. After the chemo I had 45 days of radiation. After that, my regiment became Lupron and a Zometa infusion every month for my bones.

    I have also had bone scans, pet scans, MRI’s and a bone biopsy which have shown an increase in  metastatic disease in my pelvis front and back, that at times have caused pain whereby I had to take prescribed pain bills.  

    However during most of the time I have felt quite good. My PSA has been undetectable.

    Last June (2015), my local medical oncologist sent me to M D Anderson Cancer Center for their evaluation (Dr. Corn), and to see if they had any other recommendation for treatment.  They basically said that as my cancer progresses the only treatment for me would be more chemo.  However, I was also told that when I next had to have chemo I might also consider the drug Cabozantinib along with the chemo.  

    While I’m thankful that I done so well over more than 2 years, I am frustrated that there aren’t more drugs besides chemo for neuroendocrine prostate cancer.

    If anyone knows of any potential treatments, please let me know.

    Thank you.

  • Msf5414
    Msf5414 Member Posts: 2
    #6
    myhusbandwife said:

    Zeus,My husband was

    Zeus,

    My husband was diagnosed with small cell prostate cancer about 3 weeks ago. We are going to have second round fo chemo, etoposide and carboplatin, cisplatin later. Radiation down the road. He is also on Cosadex and Lupron, as his is mixed with adenocarcinoma. What makes me mad that doctors could not diagnose him since July, I am really mad at such kind of doctors. This kind of cancer grows fast. We lost so much time. He is 73y.o., lost about 35 pounds, muscle wasted, walks with walker, and he was always very healthy man.

    Our PCP talked to doctors at Hopkins and Cornell universities. Talked to lead investigator in Aurora kinase trial. They all agree with given protocol. Aurora Kinase trail didn't publish any stats yet, hower in private conversation .... numbers are not very exciting. My husband decided to stay with his medical oncologist and go through standard treatment, which they use to treat small cell lung cancer.

    I insisted to send his biopsy tissues to Caris labs, may be it will help to choose right chemo drugs down the road. 

    It's horrible type of tumor. My researches on line don't give any hope at all, if only miracle happens. I need to stay strong for him and be supportive.

     How is your dad doing? Have you found any specialist who would give any hope? Please share! 

    Anyone with any information about specialists anywhere in the world? Please help! 

    Small cell prostate cancer

    How is your husband doing?

    We are in a similar situation. My dad was diagnosed with small cell prostate cancer on November 12. He is 75 and had been in excellent health until just a few weeks before diagnosis when he developed vague symptoms that led to the identification of this grave disease. Within 3 weeks he developed urinary obstruction, went into acute renal failure, required dialysis and now has bilateral nephrostomy tubes. He started chemotherapy with carboplatin/etoposide and just completed his third cycle. He is declining rapidly; has lost 30 pounds, muscle wasting, extreme fatique, weakness etc. Because it is so rare, it has been very difficult to find any information beyond first and second line chemotherapy. My dad lives in Cleveland and his doctor is Dr. Hoimes. We chose him because he is an investigator in the Aurora Kinase and therefore, familiar with this rare disease process. There is some consideration of enrolling him in the trial. I am not aware of any early results from this trial.

    Did you send your husband's biospy to Caris Labs? Was the information helpful? It sounds like you are a little ahead of us in the process.

    Any info you could share would be helpful. 

    Thank you.

     

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #7
    Msf5414 said:

    Small cell prostate cancer

    How is your husband doing?

    We are in a similar situation. My dad was diagnosed with small cell prostate cancer on November 12. He is 75 and had been in excellent health until just a few weeks before diagnosis when he developed vague symptoms that led to the identification of this grave disease. Within 3 weeks he developed urinary obstruction, went into acute renal failure, required dialysis and now has bilateral nephrostomy tubes. He started chemotherapy with carboplatin/etoposide and just completed his third cycle. He is declining rapidly; has lost 30 pounds, muscle wasting, extreme fatique, weakness etc. Because it is so rare, it has been very difficult to find any information beyond first and second line chemotherapy. My dad lives in Cleveland and his doctor is Dr. Hoimes. We chose him because he is an investigator in the Aurora Kinase and therefore, familiar with this rare disease process. There is some consideration of enrolling him in the trial. I am not aware of any early results from this trial.

    Did you send your husband's biospy to Caris Labs? Was the information helpful? It sounds like you are a little ahead of us in the process.

    Any info you could share would be helpful. 

    Thank you.

     

    Inquire about Lutetium-177

    Msf5414

    I am sory for your dad's diagnosis. As you found out there are not many recommendations for treating small cell PCa. I wonder if the newer radiopharmaceuticals would be of any good in these difficult cases. Please read details and discuss with his doctors in reagards to the possibility of using Lutetium-177 to locate cancerous cells and "kill" them on the spot.

    I know nothing about that but you could inquire on the matter with a doctor involved in the trial of the Lutetium-177. Here you got the govenment link for the trial;

    (make a copy for his doctor)

    https://clinicaltrials.gov/ct2/show/NCT01876771

    Please also read this other link that may be of interest in your dad's case;

    http://prostatecancerinfolink.net/2015/03/24/will-lu-177-anti-psma-be-the-next-xofigo/

    Best wishes and luck.

    VGama

     

  • Msf5414
    Msf5414 Member Posts: 2
    #8
    VascodaGama said:

    Inquire about Lutetium-177

    Msf5414

    I am sory for your dad's diagnosis. As you found out there are not many recommendations for treating small cell PCa. I wonder if the newer radiopharmaceuticals would be of any good in these difficult cases. Please read details and discuss with his doctors in reagards to the possibility of using Lutetium-177 to locate cancerous cells and "kill" them on the spot.

    I know nothing about that but you could inquire on the matter with a doctor involved in the trial of the Lutetium-177. Here you got the govenment link for the trial;

    (make a copy for his doctor)

    https://clinicaltrials.gov/ct2/show/NCT01876771

    Please also read this other link that may be of interest in your dad's case;

    http://prostatecancerinfolink.net/2015/03/24/will-lu-177-anti-psma-be-the-next-xofigo/

    Best wishes and luck.

    VGama

     

    Aurora Kinase trial

    Thank you so much for your response. I spoke with my dad's doctor and he suggested the Aurora Kinase trial. Is there anyone out there who is familiar with this trial??

    Thank you.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #9
    Msf5414 said:

    Aurora Kinase trial

    Thank you so much for your response. I spoke with my dad's doctor and he suggested the Aurora Kinase trial. Is there anyone out there who is familiar with this trial??

    Thank you.

    Aurora Kinase trial

    Msf5414

    I wonder which Aurora Kinase trial your doctor is referring to. Is it a new trial?

    Back in 2013 there was a trial for the inhibitor MLN8237 (Aurora A Kinase), which results are expected to be published in 2017. It started in 2011 and ends this year, so that your doctor via his medical association may know already preliminary results (and the side effects experienced by patients) that can influence your dad’s decision into participating.

    The trial link is this; https://clinicaltrials.gov/ct2/show/NCT01799278

    The National Cancer Institute also held an Aurora Kinase trial for the same inhibitor which ended in 2015, therefore with more details on the results. A preliminary opinion on the results concerned the dose-limiting toxicity (neutropenia). You could inquire with his doctor about such details.
    You can make a copy of this PubMed article on the subject for your discussions;
    http://www.ncbi.nlm.nih.gov/pubmed/24965505

    This is the link to the National Cancer Institute trial; https://clinicaltrials.gov/ct2/show/NCT01316692

    The most important aspect to consider in participating in such a trial would be of securing assurances that one would get the drug. Not to be included in the placebo group. Advanced cancer patients with Small Cell Prostate Cancer have no time to spare for participating in such lengthy trial period (5 years) without proper treatment.

    My advice will be for your dad to be careful with any anemia case. Phase III trials are good and safe if participants are constantly monitored. Check the lipids frequently.

    Best wishes,

    VGama

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