NEPC -Chemo not working: So my father... - Advanced Prostate...

Advanced Prostate Cancer

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NEPC -Chemo not working


So my father just had his third round of Jevtana and carboplatin. We are all highly suspicious that the chemo is not working. It is keeping his PSA stable but the chromogranin A continues to rise. Although he is at the CITY OF HOPE it seems that the CAR-T treatment is still awaiting IRB. His MO has explained That there are many people awaiting this trial treatment. I don’t know how long we can really wait, the chemo seems to be keeping the cancer possibly stable we will not be assured of this till he receives a CT scan. I believe the next steps should be a PSMA Scan and possibly looking into Lutetium 177 in Germany. His MO did suggest that Germany does have a better formula then the US although it is just started to be utilized here. I’m reaching out to ask anyone with neuroendocrine prostate cancer that has had successful results with this treatment and with minimal side effects. Or if there any other treatments that I can look into as soon as possible. I don’t want to waste too much time. Also after the third chemo he has the most severe constipation we have tried everything and we are on day number four I am calling his MO to see what I can do but we have done everything that the triage nurse has asked us to try. If anybody has some amazing ideas please pass it on my dad is severely uncomfortable!

23 Replies

How high is his chromogranin A score ? I have heard that sometimes the markers can rise at first when there is tumor die off. This did not happen for my husband.. but there was a little up and down. At first he got a good drop off (It was over 1000 and then down to 300). then it was up and down in the low 200 to 150... The following treatment of Strontium and chemo got him down to a normal level. The chemo really strips your digestive system. For my husband I made him take a really good probiotic every day. Make sure you buy a supplement one that is kept chilled. If he will tolerate it.. could you make him fresh carrot juice ? or if he won't drink that, we did fresh apple juice.. the enzymes in the raw juices can help. Also get him to start drinking a good ALOE vera. probably has the freshest and best ... it is pricey though. Otherwise you can get some from a nutrition store. I mix my husbands into a morning smoothie.. to hide the taste.

Don't forget good old fashioned enemas! They do work. You can do them with just bottled water or buy the ones at the store. Gerson recommends the coffee enemas but I have always wondered if the coffee is necessary... even those help to get things moving.

Also there is something on Amazon called restore.. It is worth a try.. it is one of those things for leaky gut but I bet it would help with this as well. My teenager was taking and we had to stop it because he said it gave him diarrhea.

Sending tons of hugs and prayers!

Thank you so much for that wealth of information. He cannot do enemas because his platelets are low and we are worried about bleeding. I will try the fresh juices and see if that works. His chromogranin was 450 his previous was 265. What is interesting is that his PSA only went up one point from 17.4 to 18.4 so it stayed stable. I don’t understand if chromogranin is increasing and PSA is staying stable is there anyway possible the tumor sizes are shrinking? His MO keeps saying we should continue to try because these ups and downs occur. I am just so worried to waste time like we did with the Xtandi. I just want to move onto a treatment that will work and there are plenty of options out there it’s just trying to figure out which one to go to next and what tests are needed.

I would not worry yet about the Chromogranin score. 450 is still a lot lower than what my husband started out with. I think sometimes other things can cause it to jump. According to our current oncologist. Chemotherapy is one of the best treatments for Neuroendocrine cancers. Just be patient.. Start trying to get probiotics into your Dad. Will he drink Kombucha Tea ? I know you are probably avoiding Dairy but homemade kefir is the best source of probiotics around... it is soooo easy to make. I bought kefir grains from - I tried others but she had the only ones that were actually still alive.. You just add the grains to some milk(can be low fat) and let it sit 24 to 48 hours at room temperature.. strain the grains out.. do not rinse the grains.. but add to milk to make more kefir. Kefir grains eat the milk sugar. This is the best probiotic you can get but I always hesitate to recommend because I know that milk is not good for prostate cancer..

I remember you had told me about the Kiefer and kombucha he will not drink it. He is super picky about what he eats and drinks and no he is not vegan or vegetarian especially with the chemo we just want to make sure that he keeps his red blood cells up and continues to eat meat. After all this research I know that it would be better for him to stay vegan but I also believe that there is a balance in the quality of life and for him (although not a big heavy fat/sugar diet)he loves to eat! My mother cooks delicious food and otherwise very healthy but he still does eat the red meet twice a week chicken once a week and fish once a week.

I think we will try prepping three or four days before his next chemo infusion. Did your husband have the same or similar response with his chromogranin and PSA? Did he ever have a scan follow up to see if the chemo actually shrunk the tumor is down?

His PSA was low once he got on hormone treatment. It seemed to fix that part of the cancer. He did get a scan.. actually 3 scans.

(Scan1)The initial scan before treatment which showed cancer in a lot of places.The First Chemo treatment plan which was Taxotere and Carboplatinum.. (He did six treatments every three weeks)

Scan2 - His scan showed shrinkage of a lot of the tumors but there were some still left on the bones. He then got a treatment of Strontium and low dose chemo that was meant to radiosenstive the cancer to the strontium(I think I am remembering that correctly) He got this every week for 6 weeks.. we ended up skipping one treatment due to low white count.. but did 5 out of the 6.

Scan3 - The last scan was really good as there was no evidence of active disease.. the bones were still healing from the lesions and it is not always easy to tell if it is gone.

For now we get a chemo vacation for a few months and are just on Lupron and Zytiga. This makes me nervous of course but I think his body needs a rest from chemo and time for the white blood cells to recover.

At this stage of chemo I couldn’t stand most foods. Wife got good at making potato and gravy with plain chicken on occasion. 😀

I think we will try prepping three or four days before his next chemo infusion. Did your husband have the same or similar response with his chromogranin and PSA? Did he ever have a scan follow up to see if the chemo actually shrunk the tumor is down?

We went with the strongest chemo (Per Dr. Kwon)hoping that it will help shrink down stop the growth. I am just worried that my fathers NEPC is a very tough and resistant one. After his 3rd chemo, PSA increased 1 point and Chromogranin 200. I will take a look at the liken. Thank you!!

A fellow in this group, Raul80, has had very successful Lu-177 treatment in Germany. If I remember correctly, he said it cost 12,000 euros, but it really blew away his cancer.

If he doesn't happen to see your posting, you can find his postings and, if you have more questions, try contacting him directly via the healthunlocked message system. He is a very knowledgeable guy.

Unfortunately, it appears that HealthUnlocked doesn't find member names in its search software, but you can use Google as follows to find his postings with: Raul80


I follow him as well and i have read his success. This is why I was curious about if anyone else has had this treatment. Tall_Allen just posted something interesting below I would

Like to look into he seems to be very knowledgeable.

Neuroendocrine cancers are relatively impervious to the effects of taxanes (Taxotere or Jevtana). Often there is a mixed type - so they treat it with both a taxane and a platin (like Carboplatin). As the acinar prostate cancer is killed off by the Jevtana, the NEPC comes to predominate - leading to the rise in Chromogranin A.

It is actually not Lu-177-PSMA you should be looking, at but a different radiopharmaceutical they are testing in Heidelberg called 213Bi-DOTATOC. PSMA is not expressed on neuroendocrine tumors, but there are often somatostatin receptors. Here's an article about the current clinical trials for NEPC:

AlanMeyer in reply to Tall_Allen

Great article Allen. Thanks.

Short Alan (5'7")

My PSA and Chromogranin both rose at first then started to fall as I had more Chemo infusions. I had Docetaxel and Carboplatin. His numbers should go down with subsequent infusions. Chromogranin is slow to come down.

I am praying and wishing it does!! I just am worried because he has failed other modes of treatment. This makes me hopeful! How much chemo did you have before you saw it begin to decrease? Have you had any treatments after that. I really appreciate all of this information because there’s very little online.Thank you wishing you the best!

I am sitting in the Chemo chair right now taking my 19th infusion. My PSA dropped sharply after the 4th infusion. Chromogranin has been slow to drop the drop started around infusion 6. The other markers also show similar results. Other markers are acid Phosphatace,alkaline Phosphatace, RBCW, etc.

to me the important thing is that my bone and CT scans which I have done every three months show that the cancer in my liver lungs and bone are stable or getting smaller. My MO at Msk says that I will be on the Chemo as long as it works.

Wish you the best. I will keep you and all the others in my prayers. After seeing my fathers response to his first 2 chemo infusions. I was losing hope - till you replied, I really appreciate your experience. Neuroendocrine PC is rare and there isn’t much information that I understand. I just received my dads Chromogranin send from 467 to 409 his PSA from 17.6 to 18.4.. i will stay hopeful..

hugs and prayers!

How are you doing? Any changes in your PSA or Chromogranin? My father is going for a CT with contrast on Monday to evaluate if there is a decrease in size/spread. Were you scanned? Did the scans parallel the decreasing lab values? I’m curious..

My wife put me on miralax at day one of chemo, have had no issues with constipation

I am so sorry to hear about your Dad's constipation. My Dad had that problem when he was on docetaxol. When Lactulose stopped working and it was reaching day number 5 with going to the bathroom, I gave him prune juice. I warmed it and gave him to drink almost a tea cup of prune juice mixed with warm water. it was half half. He used the bathroom after a few hours. Have you tried Lactulose? If it did not work, try prune juice.

I wish him well and hope that either of these works for him. My regards to you and yoru Dad.


To: Daddysdaughter.

You're a Saint....

Good Luck and Good Health.

j-o-h-n Tuesday 02/27/2018 1:35 PM EST

Daddys Daughter and Software mom, are both Saints, IMO there is a special place in Heavan for the caregivers that take such good care of cancer patients. It is surely an act of love.

Daddysdaughter in reply to Dan59

Thank you so much! I ❤️❤️❤️ my parents and I will do whatever I can to make their time left as health and happy as possible! They have worked their lives to raise us and they only deserve the best!! Thank you 🙏🏻

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