HealingWell
Search Close Search
☰

Metastatic Prostate Cancer

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
1 23
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/22/2017 5:57 PM (GMT 0)
Well, not sure what to make of all of this, so we are just going to take this one step at a time. The appointment went well. They ordered a PSA test, CT of the abdomen and complete body bone scan. All testing taking place on Monday. They think he may have a rare form of prostate cancer, Neuroendocrine prostate cancer (NEPC). They are reviewing the slides from his surgical biopsy. There were makers present that are rare for PCa (chromogranin and synaptophysin). I know what this could mean but I refuse to give up hope and I truly believe treatment will help. They have started him on casodex until we figure out more what we are dealing with. Please continue to keep us in your thoughts and prayers.

With HOPE,
Nikki
Posted 4/22/2017 6:15 PM (GMT 0)

Dear Bird8,

I continue to send my thoughts, support, and prayers to you and your husband.

The tests will be informative and diagnostic --- it is at that point that your husband's doctors will get a proactive treatment plan started.

Getting started on treatments can be encouraging, in this way ... you begin to feel like you've put on your boxing gloves and jumped into the boxing ring ... getting started ... getting a plan of action ... getting started on treatments, rather than just endless waiting ...

Stay strong, stay positive, and stay connected to all of us here ... as you can see first-hand, there's a tremendous amount of support to be found, right here ...

Let us know how you're faring ... you've got the support of ALL of us here !

Handshake of support, from across the miles,
"Cyclone Team Fan" ~ Iowa State University
Posted 4/23/2017 5:37 AM (GMT 0)
Nikki,
I'm going to send out the most positive vibes and prayers that it is not neuroendocrine, but if it is, don't give up hope because there are good and effective treatments for that, and new clinical trials that Allen would know about that your husband may qualify for.
Keep us posted and we will be praying for you Monday. Gary will be getting diagnostics done as well, an echocardiogram to see if the chemo. regimen is taking a huge toll on the ability for his heart to pump blood efficiently.
Please know while I'm holding on to his hand, I'll have your's in my other.
How's is your DH hiding up through all of this?
Also, I'm curious, and maybe you said and I missed it, how did he end up getting a diagnosis at such a young age? Did he have symptoms?
Take care Nikki and stay strong.
Beth
Posted 4/23/2017 9:45 AM (GMT 0)
Nikki,

here is a link to possible treatments of neuroendocrine prostate cancer

George

This therapy may help too: Long-term tolerability of PRRT in 807 patients with neuroendocrine tumours If you find such a study that you can take part in.

Post Edited (George_) : 4/23/2017 4:00:29 AM (GMT-6)

Posted 4/23/2017 8:27 PM (GMT 0)
If confirmed, that is not the kind of news anyone wants to hear. There are several different kinds of neuroendocrine PC (the most common type is small cell PC), and most men who get it get a mixed type. The mixture means that one still has to treat the adenocarcinoma part of the cancer with traditional therapies (hormone therapy and docetaxel) while the neuroendocrine part, which is not responsive to hormone therapy or taxanes, must be treated with platins and other kinds of chemo.

The best chance for a treatment that will extend survival is a clinical trial. Here is a list of trials he may be eligible for:

/pcnrv.blogspot.com/2016/12/small-cell-prostate-cancer-clinical.html
Posted 4/24/2017 2:47 AM (GMT 0)
Beth and Cyclone,

Thank you for your kind words! Beth, I believe it all started in January with hip pain (we shall see what the bone scan shows), followed by swollen lymph node (biopsy confirmed cancer), with another episode of hip pain/thigh pain in March (5 days of horrible pain). None of this makes sense to me! I'll be keeping you and your husband in my thoughts and prayers; as well as everyone on this forum fighting this beast. My husband is choosing not to talk about it and keeping himself busy. We are both trying to keep our minds off of it. Of course I am very concerned I know the prognosis for this rare form of prostate cancer but he's a fighter and we have faith and hope. So thankful for you all!

With HOPE,
Nikki
Posted 4/24/2017 2:52 AM (GMT 0)
George and Tall Allen,

Thank you for taking the time to give me some additional information about treatment and clinical trials. Knowledge is power! Mike's next appoint with MO is May 8th. We are hoping all of the pieces of this puzzle will be put together so we know exactly what we are dealing with.

Take care,
Nikki
Posted 4/25/2017 10:55 PM (GMT 0)
Hi Nikki,
I'm so sorry you're going through this. Your post struck a nerve with me - I'm the same age as your hubby (my husband is a bit older than I), and we also still have 3 kids at home. We're new on the journey too, and my heart goes out to you - those first few weeks of diagnosis (still trying to keep it together at home while amassing an overwhelming amount of information and making what felt to be life-death decisions) were SO HARD.
I hope yesterday's scans gave you some good news, or at least some information you can work with. Keep us posted.
-Mina
Posted 4/25/2017 11:24 PM (GMT 0)
Sr Sailor,
I was trying to point out is that sugar is a feeder.

a. Sugar is a cancer-feeder. By cutting off sugar it cuts off one important food supply to the cancer cells. Sugar substitutes like NutraSweet, Equal, Spoonful, etc are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses but only in very small amounts. Table salt has a chemical added to make it white in color. Better alternative is Bragg's aminos or sea salt.
I got this from American Cancer Society from Johns Hopkins. I believe eating correctly helps thats all I was saying, it all ok different thoughts. And Celebrate Life thank you for pointing out my error glad I gave you a chuckle gave me a smile also.
Posted 4/26/2017 2:23 AM (GMT 0)
We found out yesterday that PSA is 718 with bone mets in the right hip and left femur (based on x-ray). We are still waiting for CT results of abdomen and bone scan. My question for the night, could this still be a neuroendocrine prostate cancer with PSA levels this high? From what I've researched, which isn't too much (I'm a little overwhelmed), I thought PSA would fall closer to the average range. Is it possible to have these markers (chromogranin and synaptophysin) and still have PCa and not neuroendrocrine. My hunch is the PSA is so elevated due to how advanced the disease is. Anyone have numbers this high?

With HOPE,
Nikki
Posted 4/26/2017 3:01 AM (GMT 0)
I'm so sorry about the bone mets. Were they blastic or lytic or a combination?

ChromograninA and synaptophysin are biochemical markers of neuroendocrine differentiation, and you are right that many of them don't put out a lot of PSA. But many times it is a mixed type - an adenocarcinoma mixed with a neuroendocrine carcinoma. Also, there are different kinds of neuroendocrine carcinomas, each with different traits.

I hope you are looking into those clinical trials I mentioned, and you are searching for a medical oncologist with specific experience in this particular diagnosis.
Posted 4/26/2017 6:21 AM (GMT 0)
Hi Nikki,
Just a short post of encouragement as it is late. Gary's initial scans were much worse and his PSA much higher. We went through the agony of awaiting the results about nuroendocrine a couple of times. Try to find a Dr that is willing to help you research and enrolled in those clinical trials.
TA mentioned. Your DH needs to have every resource available to get the best results. Still remaining hopeful it is all adenocarcinoma.
Beth
Posted 5/2/2017 1:24 AM (GMT 0)
We have received all of the results but won't know all of the details until his appointment on the 8th.

The bone mets are blastic affecting the following areas: sternum, bilateral ribs, multiple levels of the spine (primarily L3), multiple areas in the pelvis (primarily the right iliac), right and left femur and left humerus.

Multiple lymph node involvement not including the mass on his neck:
- 1 cm portocaval node (2:52)
-2 cm para-aortic node (2:71)
-2.6 cm aortocaval node (2:90)
-1.9 cm left common iliac node (2:8)
-1.5 and 1.4 cm presacral nodes (2:118)
-1.4 cm right internal iliac node (2:127)
-3.1 cm right external iliac node (2:130)
-9 mm right inguinal node (2:172)

The pathology they ran from his surgical biopsy leaves me feeling uneasy and unsure. How would you interpret the findings. They are diagnosing it as a poorly differentiated metastatic adenocarcinoma. What about these markers? No mention of what they think about them (very vague). I will wait until his appointment but should we be seeking a 3rd opinion. Of course I am overly concerned. I want to be sure his treatment is appropriate for what we will be up against. Here are the results from their pathologist:
Histologic sections revealed an adenocarcinoma composed of uniform round cells arranged in cohesive cribriform structures. Provided
immunohistochemical stains show that the lesional cells are positive for
pan-cytokeratin and PSA but largely negative for p63, CK20, TTF-1, HMB-45, CK5/6, CA19-9, LCA, CK7, and CDX-2. Synaptophysin and chromogranin highlight rare cells of uncertain significance. The overall findings are most consistent with poorly differentiated metastatic adenocarcinoma of prostatic origin.

Thank you all for lifting me up when it feels like everything is caving in!

With HOPE,
Nikki

Post Edited (Bird8) : 5/2/2017 4:09:54 PM (GMT-6)

Posted 5/2/2017 6:15 AM (GMT 0)
Hi Nikki,
While your DH has a lot of involvement, it appears that it is not neuroendocrien from the results you've posted. I hope that whatever treatment you DH receives that he gets a good and prolonged response.
Beth
Posted 5/10/2017 1:20 AM (GMT 0)
And so it begins. We met with MO on Monday. Hubs will be starting 6 cycles of Docetaxel, once we sit through another appt with Onc that will be administering the chemo. MO says neuroendocrine cells are present but rare in comparison to prostate cells. MO feels that Docetaxel will work to fight off both types. We will be looking into clinical trials and as always I appreciate the knowledge and support of this group. Please share, if you'd like, any experiences/insight you may have. We are telling our little guys on Thursday (the only day they don't have baseball practice). I'm finding it hard to let go and trust in the process. Is this normal?

With hope,
Nikki
Posted 5/10/2017 4:07 AM (GMT 0)
I'm so sorry your family is facing this. we agonized about telling our boys, but we led with all the ways they'd be unaffected before we talked about the serious stuff. Over time, questions arise. Those sweet boys will be motivation for your hubby to fight and live.

sending my best to you and your family.
Mina
Posted 5/10/2017 4:43 AM (GMT 0)
Hello Nikki,
I bet your glad you got that appt with MO out of the way and you are moving on to treatment.
Please know that we will be holding you close as you go through the agonizing process of telling your little guys. I work with kids the same age as your guys for many years, and I can tell you they are resilient, but may internalize and find it difficult to express their feelings about it right away. It sounds like you are striving to maintain normalcy in your lives as well. If you haven't had a chance to read the threads about what to expect following chemo, it is so very informative. It might help you talk to the kids about what to expect.
As far as the treatment plan of doxetaxil alone, I'm really no expert, but I have seen many instances of platin and taxanes being used in combination if there is suspected neuroendocrine cells, and I'm curious with confirmed mutation of any cells at all why the MO wouldn't go ahead and do that. I'm sure TA will post here soon and give you a more knowledgeable reply about that.
Thank you for updating Nikki. Keep the faith and hang in there.
Beth
Posted 5/10/2017 10:36 PM (GMT 0)

Hello Bird8,

I've been reading all your posts ... I'm sending all my support to you and your husband.

It sounds like you've got a proactive plan --- there's POWER in that --- getting some treatments STARTED.

You mentioned a series of chemotherapy treatments for your husband ...

There are many of us here who have gone through the exact series of chemotherapy treatments you referred to --- the brand name of the chemo that you mentioned is TAXOTERE.

I went through TAXOTERE treatments about 3 years ago and I know that they helped me --- I watched my PSA go down lower, with each subsequent treatment. I did the series of six infusions that you mentioned --- each infusion was given once, every 3 weeks, over the course of 18 weeks.

I went to work each day --- I stayed active --- I kept up with friends and family --- I went to social events --- I exercised most days --- and I rested when I needed to do so ...

I have a helpful suggestion for you ... at the top of your computer screen, you will see a search box. Type in this thread title, as follow: TAXOTERE SIDE EFFECTS.

You'll find the thread immediately ... quite a few of us here have banded together to share our first-hand experiences with chemotherapy --- you will find this thread informative and helpful --- very insightful.

We wanted to share our collective experiences, to help other fellows, just like your husband --- as he gets ready to start his chemo treatments. That thread also contains some suggestions for mitigating side effects and learning to "navigate" through a series of treatments ... print off a copy and share it with your husband, if you would like ---

I just wanted to let you know I was thinking of you both --- and sending my care and concern !

Handshake of support, from across the miles,
"Cyclone Team Fan" ~ Iowa State University
Posted 5/10/2017 10:56 PM (GMT 0)
nikki,

thinking of you & keeping your family in our prayers.
Posted 5/11/2017 2:35 PM (GMT 0)
Hi Nikki,
I am very sorry to hear of your husband's diagnosis. I know how difficult a diagnosis Like this can be especially at such a young age.
You have received a ton of good advice. I'm afraid I don't have much more to offer. Tall Allen is most likely the most informative person outside of a doctor that you can talk to you. He is in the know. I'm afraid I have grown complacent over the years. I encourage you guys to have genetic testing done on the cancer slides. Medical science is heading in the direction of targeted therapy. Knowing the genetic make-up of the cancer can show which treatments are most likely to work as well as show the ones that may not.
June , 6th I will begin Year 12 of my battle with metastatic prostate cancer. As far as I know, I am undetectable.

There is hope guys. I swear to you, There Is Hope!! It seams like the world is falling down around you but there is hope. You have to believe it. When you are drinking the contrast and the big machines are scanning you, when every appointment yields worsening news, when fear fills your spirit with dread, There is hope.

I remember those days. Although they seam like a distant nightmare, I do remember the way reality sank in with each passing day. I remember the fear in the eyes of my wife and I remember her crying in her sleep. I remember my children crying. It was a difficult time. Ther Is Hope!!! Hold on to it like a life ring. The seas are rough and the eye of the storm is closing in but there is hope.

I am not a genius like TA. I am not as good at ISU at empathy. My gift to you is that I am a lighthouse!! My email is listed. Feel free to use it. If you do, I will email you my number. I hate to type as it is always from my phone. I love to talk and those who know me can attest to that.

11 years from DX and I still work 50 to 60 hours a week. I still waterski snow ski snowmobile kayak hike hunt fish bike and live my life every day to the fullest possible.

I am here for you guys. Todd
Posted 5/12/2017 12:29 AM (GMT 0)
Hi Nikki-

I'm sorry, I didn't get the f/u posts in my email - I wondered what the upshot was.

Well it's not unusual for there to be a bit of neuroendocrine cells in the mix when the mets are highly undifferentiated. Chemo is certainly the best first step. To Beth's idea of mixing in a platin - yes, some MOs do that, but it sounds like your MO believes there are such a small number of NE cells that docetaxel alone might clear them and it's not worth the extra toxicity. You can always try a platin later if more show up.

Before he gets his first infusion, I want to throw at you a few clinical trials that mix docetaxel with another agent. It's important to consider this now (as if you didn't have enough on your mind!) because this is probably the only chance he will have to get them before he becomes castration-resistant. Maybe email this list to your MO and ask for his comments: (I don't know where you're located - I assume in the US?, or I'd tailor the list to you. NIH trials are particularly good in that they pay for all costs, including travel and accommodations. On all the trials, the drugs themselves should be free and your insurance will hopefully pick up the medical care costs)

/clinicaltrials.gov/ct2/show/NCT02649855 (with Prostvac at NIH)

/clinicaltrials.gov/ct2/show/NCT02793765 (with Ipilimumab at MSKCC)

/clinicaltrials.gov/ct2/show/NCT02793765 (with Provenge at UT Houston)

He could get early use of Xofigo at this study in Indianapolis:

/clinicaltrials.gov/ct2/show/NCT02582749

He could possibly get early use of Xtandi on this one:

/clinicaltrials.gov/ct2/show/NCT02677896

Or, he could possibly get a very promising new hormonal therapy, apalutamide (ARN-509):

/clinicaltrials.gov/ct2/show/study/NCT02489318

Lots of good choices!

BTW - I'm so impressed that you are bringing your kids in on this. To me, that's what family is all about: together through the good and the bad.
Posted 5/12/2017 2:12 PM (GMT 0)
Nikki

First of all, my thoughts and prayers to you and your family. The other gents have provided a lot of great advice, so I will throw my 2 cents in.

1 - Make sure that your husband and yourself are active advocates for his treatment. If something does not sound right, ask, seek a second opinion.

2 - Keep a copy of all the test reports and scans. I have a 3 ring binder that I use. It has been tabbed for easy access to the information I need. Get copies of all your scans on CD and keep them in your binder, you never know when you will need them. If you husband has had scans for prior medical concerns get a copy of them, they may be helpful.

3 - I hope you conversation with you children went well. When I was diagnosed my daughter's where 13 and 17. It was a difficult day,but we made it. Now they provide extra support. Be aware, as you already are, that each kid is different and will handle it in a different way.

4 - THere is progress be made by the medical community. When I was diagnosed, Zygita was not approved. Now I am receiving the benefit of the research.

Best of luck to you and yours. Keep us posted and remember you are not alone.

Mike
Posted 5/12/2017 2:40 PM (GMT 0)
Hi Nikki

Your family are in my thoughts and prayers
Posted 5/15/2017 10:33 PM (GMT 0)
Thank you all! Once again, it feels so great to know that we are not alone. Wow, this is truly an exceptional group! The talk with the boys went very well. We notified their schools in case there is a change of behavior or they feel like they need someone to talk to. Our MO gave us information for a social worker through the Cleveland Clinic. We have our next appointment with the Chemo MO on Thursday. TA, I printed out the list of clinical trials. Thank you for taking the time to reply with that information. I feel better about the rarity of the neuroendocrine cells. They assure us that they will be watching closely. We are in the Cleveland area so there are some options close by. Todd, I've read through your blog. Reading about your journey and Beth's DH Gary give me hope everyday that we CAN and WILL defeat this monster. It means so much to pop on to this forum and receive the love and support coming through these threads. I'm sure I will be back after Thursday's appointment with more questions. I'm wishing you all continued health and lots of love!

With HOPE,
Nikki
Posted 5/16/2017 10:38 PM (GMT 0)
Please do keep us update Nikki, my heart is with you and your family.
✚ New Topic ✚ Reply
123

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.