See my profile for my full history. In brief, I was diagnosed with neuroendocrine cancer in January in my bladder and liver, responded well to carboplatin+etoposide, but the cancer came back in my liver by the end of September.
I just started my third cycle of cabazitaxel chemotherapy and have a scan scheduled for December 15th. The blood test results from Monday are not encouraging. Liver enzymes and LDH are all above normal and at record high levels for me. Chromogranin-A, which normally has not been elevated for me, has gone up approximately 20-fold in six weeks and is now in the 500s.
I've already reached out to Dr. Beltran at Dana Farber to discuss potential next steps should the upcoming scan be as bad as I fear it will be.
On a personal level, I am extremely distraught. My body has been beat up by 9 cycles of chemotherapy so far this year, not to mention atezolizumab which faield. I really was hoping for some form of remission to allow my body to recover and get healthy again before having to continue the fight. Actually, an indefinite state of "no evidence of disease" would have suited me just fine.
The only silver lining in all of this is my PSA has dropped from 0.16 to 0.06 in the past 6 weeks.
I usually try to be positive, but this possibility of having suffered through treatment for little or no benefit is new territory for me. I'm hoping somebody out there can commiserate with me, but fear that most people who have been in my situation have already passed on.
Sigh...
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tom67inMA
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Have you discussed with an MO? Are some of these results perhaps to be expected as cancer is killed or body cells temporarily destroyed? I don't know much about chemo but since it kills off cancer cells as well as normal cells perhaps some of the metrics are temporary (I wouldn't be surprised if the liver stuff is temporary - fast-growing).
My LDH is a little high but my MO said not to worry about it. She thinks it's elevated due to exercise. Perhaps chemo also elevates it?
As I'm sure that you know, PSA isn't everything, but it's a very good marker. I'd try to look at the positive and wait to worry until you discuss everything with your MO (at least one MO).
I'm not there yet but I do feel for you and hope everything turns out okay.
I have two MOs: My local MO who is administering my treatments, and Dr. Beltran who is researching neuroendocrine prostate cancer at Dana Farber. I am in the process of discussing the results with them online, and expecting to set up an appointment with Dr. Beltran.
The problem with PSA is that NEPCa doesn't put out any. When a large NE tumor in my bladder blocked my kidney, my PSA was <0.01. That said, I do take some comfort in my dropping PSA because it means I'm only dealing with one flavor of prostate cancer that's out of control.
Thanks for the rational advice. It's very difficult for me to be rational in the days after a chemo infusion. It screws with my head and makes it difficult to process unexpected news.
Dang tom, I can really see your strong angst there ..... your powerful survival instinct on full display. You’ve got a lot of chit going on there buddy. I feel for your angst, I know how you feel. We all have different ways of getting there , but the names da same. Herze a woefully inadequate hug for you brother .... I don’t have much else to offer. My own diagnosis , right out of the box , was inpatient hospice , I don’t get scans or other diagnostics anymore .. my medical team considers me “ way “ past wasting the time or money on stuff like that. I was DXed way late in the game. I have jaw dropping amounts of mets, tumors and micro mets. But still .... here I am , 25 months PHD ( post hospice diagnosis ) and I’m still kicking and hanging in there. We have some similarities ...at the least. One thing that strikes me about your post that contrasts with my own perspective is where you speak of “ trying to be positive about suffering through everything for little or no benefit. “ ..... that’s where we differ somewhat. In my head , in my case at least , I do not expect to be “ better “ or “ improve my circumstances “ . For me , in my world, “ today “ , right now is the best I ever expect to be. I’m not going to improve or get better tomorrow , next month and especially not next year. For me, it’s today.
So .... I’ve suffered and continue to suffer through crippling , debilitating ADT , painful Zometa infusions ( I’m on the leading edge of my monthly Zometa hell right now, just got another infusion yesterday ) and the elephant in the room .... the cancer eating me alive and the pain and end of life that brings.
Cutting to the quick , the main point is that I “ am “ here today . My treatment and suffering has provided me with “ today “ ... considering everything, today is miraculous for me , tomorrow will be if it comes too. Different than you, I do see benefit in my treatment, the benefit that I’m here “ today “ is enormous and I can’t express the gratitude I experience that I am here writing this. We are both realists aren’t we ... we’ve both got that hooded visitor with the bony fingers sticking out of the sleeves sitting on our couch .... we know what’s happening....... but for me , today , right now I’m here. Kinda rough around the edges for sure , but “ today “ both of us are here aren’t we. If I don’t try to read more than this into things, my angst level lowers considerably. Plus if I mess up and croak, my wifey will kick my a$$. Hang in there big Tom, your suffering has , at the very least, provided you with “ today “ .... that’s something important.
Thanks for the long and thoughtful reply! To understand my current headspace, note that when I was first diagnosed I couldn't sit for any length of time due to bone pain. After 9 months of Lupron, Xgeva, Docetaxel, and Abiraterone, I returned to working full time and trained for and ran a half marathon. I was one of those feel-good, miraculous stories of bouncing back from a bad diagnosis. When I had carboplatin chemotherapy earlier this year, it fixed my painful urination in the first cycle.
I'm very used to cancer treatments making things better. Certainly not "like I never had cancer", but historically side effects have been much more tolerable than cancer symptoms. This time it's different. I didn't have symptoms before starting treatment, so treatment is beating me down without any opportunity for improvement in symptoms.
All that is to say that you're attitude (as I understand it) that today is the best day of the rest of our lives is increasingly relevant for me, with the footnote that I was poisoned with chemotherapy a few days ago and it's realistic to expect some improvement as the initial side effects wear off.
I've never been good at living in the moment, but that doesn't mean I should stop trying. Thanks for the lesson in being thankful for today. I hope you have many more days ahead, you've been providing me with some very useful advice recently.
Easy for me to say I guess, Tom , but it was hard fought. I know that many , even most men will struggle with living in the now / moment. Saying that “ today “ is the best day is a generalization , of course we’ll have little ups and downs on our way out. ( ie: the a$$ whipping I’m getting from Zometa right now, it’ll wear off in a few days and I’ll be better generally ) yayahahahaya
Plain and simple, everything about this is the chits ... I’m pretty sure that no one does this and thinks its fun or kewl ( I hope not, anyway yayahahahaya ). Narrowing our focus, holding your loved ones close and having some fun together is good medicine for all of us. A deep dive into that will help you learn to live in the moment better. Works for me.
That is so inspiring Kaliber. Today is indeed a wondrous gift of incredible beauty. I will remember your inspiration in all of my own “Today’s”. 🙏🏻💪💪💪☀️☀️☀️🌟🌟🌟✨
My heart goes out to you, Tom! You are an incredible warrior, but your body & spirit have been taking a huge beating. I shall pray your doctors may find a way to continue treatment while giving your body & spirit a reprieve for as much time as possible. Blessings & caring thoughts!
I'm so sorry to hear about this string of disappointing results. Did you discuss the following clinical trial with Dr. Beltran?clinicaltrials.gov/ct2/show...
Also, does she feel that rovalpituzumab teserine is appropriate for you?
I haven't directly discussed anything with Dr. Beltran recently, but am trying to set up an appointment to do that. My other MO has spoken with her recently about my genetic test results, and apparently there is a trial that may be a good match for me.
I haven't had a chance to do a deep dive into my genetic test results, but two things stood out from memory:
1) My cancer has relatively few mutations. 98% of patients have more mutations than me.
2) I do have a PTEN mutation, which implies a PARP inhibitor might be helpful.
Dr. Beltran ordered the biopsy, genetic tests, and IHC. I'm sure she would have checked for everything that would be relevant to studies at Dana Farber.
It's a very good idea to ask her directly. I'm not sure if Dana Farber has the DLL3 stain, but she certainly knows Wang's lab and would have sent the tissue to him.
Prostate cancer is the most common non-skin cancer in men, and the third leading cause of cancer death after lung and colorectal cancer. Immunohistochemistry (IHC) is used to facilitate the diagnosis of prostate carcinoma, to determine whether or not foci are invasive, and to determine if a patient’s cancer will respond to androgen therapy (Pentyala, 2016).
Yes, the wet biopsy is a blood test. Please look up Epic Sciences and also how Dr. Beltran's lab is using this technology. May you have many more oil changes and rides in the Mustang🤙
Have you read Dr. AKM Shamsudin‘s book IP6 and Inositol. He discusses consulting with the government of China over the years on liver cancer. He is a professor of pathology at the University of Maryland medical school and has done research for more than 20 years on IP6 and Cancer.
This is a very common disease in China and they were concerned about their treatment protocol which involved direct injection of alcohol into the liver. IP6 has been found in the proper doseTo be effective in suppressing liver cancer. You can obtain his book from Amazon. I use the powder mixed in cold water twice a day on an empty stomach. I use natures way brand of IP6 powder
Private message me with any questions you may have.
an update several hours later: I've stopped freaking out. The chromogranin-A test makes no sense to me, as I can't imagine that such a sudden jump is not an accurate reflection of cancer activity. I've since learned that exercise, heart disease, burns, etc., all can raise the number.
It still makes sense to discuss the results of my genetic testing with Dr. Beltran and have a plan B ready, but things probably aren't as bad as they seemed earlier today. In a way, it literally is the chemo talking.
So glad you found peace of mind, for now at least. I am still working my way down this thread and really feeling what your going through and then Kaliber shares and I went over the emotional edge again. I will have you both in my prayers tonight.
And....TomInMotion is back and takes the lead...again! As I've said, you given a clear and honest voice to a journey to which we all relate. Admittedly, it initially scared me to see you write in such desperate terms, but it was REAL, and I'm glad I read on in this post to find your intellect, hope, and resolution are not yet broken, brother! - Joe M.
See, I waited to respond and you're better already, I take full credit. Kaliber had some good thoughts. My only thought is that all the good days you have had are worth the effort. I hope that knowing many of us here are rooting for you provides you continued strength.
Tom, I can't help with your situation but I'll offer a prayer for a medical solution. Maybe a trip to the mountains up to Windham will give you some peace. Bob
For a cool guy you're getting a lot of hot shit.... You do know that if I were your neighbor I would avoid you like the plague....you're running and changing motor oil would put me to shame....and my wife would get on my case to do the same..... If I only had a magic wand (not the one I used to use when I was a young stud) I would wave it over you and your mustang and make you both run forever. Take care of yourself and all of us would love to hear nothing but good news from you. To steal a little from Kaliber's post..... "holding your loved ones close and having some fun together is good medicine for all of us".
Stay strong, keep the faith and keep fighting. In the long run we are not going to win but we continue to cherish each day we are able to hold back the beast.
UROSODIOL might help your liver. I had jaundice 10 years ago from an overdose of Ketoconazole per fault of MD Anderson, Dr Corn>
Dr Charles e Myers got my liver back with the help of that drug/supplement. An ancient remedy over 1000 years old where Chinese alcoholics with liver damage ate black bear meat to help with Jaundice. The ingredient UROSODIOL is in black bear meat but now manufactured synthetically today. Out of 10 oncologists, nobody heard of it except Myers.
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