So we had the appointment with our oncologist today.
He explained to us that, while the bone mets are more or less stable, Paul's cancer has spread quite aggressively into the liver and that the scan shows a good number of mets there.
We asked him about Chemotherapy. He said that it may work but that he would almost say to us not to go down that route because with such an aggressive spread it was unlikely that it was going to work.
We are going to do it anyway. Paul is not too symptomatic and he really wants to live.
Mel and Paul.
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MelaniePaul
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So sorry Mel & Paul, but I agree - if you are ready to fight.... then fight, fight, fight!
Mets in the liver is never good. And of course your Onc will guide you in the direction that is statistically most probable. But stats can be misleading. Sometimes I wonder if a trial split up into two groups - 1) high will to live, and 2)low will to live - would yield statistically meaningful differences in outcome. Very possible IMO.
All the best - our hopes and prayers are with you.
I've wondered about the same thing, Hank. I would predict a survival benefit from a strong will to live. The attitudes will be reflected in hormonal output. Pleasure hormones fight cancer, & stress hormones promote cancer.
I agree with you guys. How often do we hear men and women right here on this site, living in dread. When I was doing my nine weeks of radiation, I saw nothing but dread. Pale, anguished, faceless faces everyday, made for a miserable greeting everyday. But, a good attitude, a free spirit, and a shitload of humor, will not be defeated by this thing.
Docetaxol. There was no talk about what happens if that doesn't work, but thank God I know from this forum that there are other treatments he could get in case this first one doesn't work.
I really hope that it will work. Hopefully it will help with the symptoms and reduce the cancer in the liver and maybe bones as well.
I wouldn't worry about what you will do if Taxotere doesn't work, but thinking ahead and having a plan is always good. Productive planning, not worrying. I try to do this and find it really helps reduce worrying. Mentally, I try to stay ahead of where I am in treatment.
As far as what to try if it doesn't work, the next step would typically be Jevtana (Cabazitaxel). From what I've read, this is the more or less the standard "second line" chemo for prostate cancer. I haven't finished Taxotere yet, but already thinking ahead to what my next chemo would be. If it makes sense for me to have another chemo, it will most likely be Jevtana.
I can testify to the usefulness of taking Prednisone with Taxotere chemo. I've done it, then stopped 2 separate times to see what the difference was. Big difference in side effects and energy level with it vs. without it. Taking Prednisone or another steroid with chemo is really important. It has allowed me to have manageable side effects. So far I have not needed anti-nausea meds because of it. I'm currently on cycle 5.
Yes, you are right: There is a difference between worrying and planning. I guess I am more a worrying-type, but have to get that under control a bit now for Paul's and my sake.
I have had a really big problem with worrying in the past. So bad that I had to work on it. I've learned to have conversations with myself about what it is that I'm worrying about, then separate things out into what I can do productively toward a resolution and what I can't do anything about. Then take the productive steps possible and let go of everything else. I have really gotten so much better with that so it's possible to train yourself, takes some discipline but well worth the effort.
You would think that I am really good at not worrying since I am a mindfulness meditation teacher myself. If I came to myself for mindfulness meditation, I would say: "Try not to worry. Live one day at a time. Focus on the now." I guess it is much more difficult when it is yourself and your relative... Good lesson for my practice. I think I will never again judge those who come to me and find it very hard to not worry and let go.
I am convinced that the will to live plays an important part in fighting whatever illness we have.
Very emotional evening. My husband has gone up to bed - he often does that if he needs some time by himself - and I am sitting here thinking about the day and trying to get a clear and calm mind.
My husband's case shows anyway once again what we often say here on this forum: that the PSA is not a very safe method of diagnosing. When we were in hospital in April and my husband's PSA was at 7, the doctors agreed that we wouldn't have to do anything for the moment and just wait and see what happens. Then the PSA went up to 27, 89 and now over 100, and now that we got a scan at last we see mets in the liver! I know it is pointless, but I can't help but wonder: What would have happened if they had done the scan in April or May? Would they have discovered it sooner? Would he have gone on treatment sooner?
I feel that as a rule for people with any form of advanced cancer we should have scans every six months at least!
Hi Melanie ,What kind of premeds will he have, I am on dexamethasone day before day of and day after twice each day,and have never had a blood count issue. They also give me anti nausea in a bag drip. It is critical he is watched closely through the first 20 minutes of docetaxol as if he has an allergic reaction it will most likely be then, and as I did they can react and give him benydryl immediately, watch for flush red face sporadic breathing ect., I had the reaction on second chemo and since I have had also benydryl as a premed. I also walk in with ice packs in a rolling cooler to ice feet bottoms and fingertips to restrict blood vessels and lessen chemo flow in that area to prevent the fingernail problem and neuropathy, I also suck on ice cubes from home as I am never sure about clinic ice in mouth. It is good to have a mild laxative on hand after such as ducolax, as constipation for a few days is a problem and the sooner you get it out the less side effects. I did my 8th last Wednesday, Unfortunately I did not have early chemo, and it would appear I am on chemo for life now, or until I can not handle it. I wish you the best, keep us posted please on how it goes.
I do think it helped to reduce chemo flow to those areas, I first got this from men who were in a similar list 10 years ago who had been through much chemo, It may help it from gettting worse at this point, I really have no Nueropathy,,My MO says vit B6 helps Nueropoathy
I remember well that evening before the first treatment and how anxious I was about it. I had quite a bit of fear, the hardest thing is not knowing what to expect. For me, it was so much easier than I had imagined. Just keep in mind, the side effects are well tolerated for most people. Many of us here are either going through it or have already been through it. Yes, you do feel crappy for most of the first week, but then the 2 weeks after are easy. The second time, you know what to expect so it's much easier. We're keeping Paul in out thoughts and prayers.
I share your concern about the delay in providing a scan, Mel. (Was it a CT scan, bone scan, both, or something else?)
Did Paul have treatments like Zytiga & Xtandi? If not, did they rule them out at this point? If you haven't explored whether there may be non-chemo treatments that might be effective, delaying the time when chemo would be your only option, you might want to look into that. But I have no knowledge about when cancer spreads to the liver, so perhaps chemo is the only option now.
This morning, when we went to the hospital to have the pre-Chemo consultation, I actually thought of you and mentioned to the doctor that you are on a combination of Xtandi and Chemotherapy and asked if we could try that. The doctor said that nothing much has changed in Paul's bones over the past couple of month and that the main concern are the liver mets at the moment. They think that only Chemotherapy is an option for that and that Xtandi and Chemotherapy would be too difficult for his system to handle. I can't judge that myself, but trust their judgment. They seemed to be familiar enough with that combination but really think that it wasn't possible for Paul to do that.
We also mentioned second-line Chemo treatments to the doctor and he said that there were some and that we shouldn't worry about that right now.
First infusion is on Monday and then every two weeks after that.
And a scan every four weks. At last, I thought they would never do that!
Oh yes, to answer your question: It was a bone scan and a CT scan, and on the CT the liver mets are visible.
Mel, please excuse my lousy memory. I'm 75, & my short-term memory became quite noticeably worse when I learned, after my RP back in 2003, that I had micrometastases to pelvic lymph nodes.
You may have me confused with someone else. My oncologists have not been open to any combo treatment in the absence of solid Phase 3 clinical trial proof.
My (almost) 3 years on Zytiga ended recently. I have my final Provenge infusion tomorrow. Short of a promising & protracted PSA response, which isn't common, I'll be on Xtandi shortly.
I'm glad the bone mets have been stable recently, AND THAT PAUL WILL NOW BE GETTING FREQUENT SCANS!
I agree scans should be performing every six months. I also believe genomic testing will be as ubiquitous as psa testing in five years (once cost comes down). Such testing might have surfaced data suggesting pro-active treatment.
My husband, 82 years old, has been going to urologists for over 20 years. Several years ago he had trouble urinating and they did a biopsy and an ablation. Since then the cancer has spread to the bones. He was diagnosed at stage 4. The oncologist asked why we waited so long. He did not see one incompetent urologist, but many. It is so disheartening to know it didn't have to be this way.
He is on Xtandi now along with the Lupron. Second year with Lupron, and it has lost its effectiveness. I called the oncologist the other day as he had new pain areas, they told me to call our primary doctor.
There will never be a cure, not when Xtandi cost over $11,000. a month. Cancer research money goes producing and promoting stronger chemicals, not a cure. And we do it because we have no other choice. Sorry I'm such a sad sack, I just see what my husband is experiencing and feel my hands are tied, I'm angry because we did not " wait so long". Once the Xtandi quits working they are suggesting chemo. After reading the side affects we have discussed extra years of suffering or shorter quality years.
Pat, I do feel for you. My biopsy report says something totally different as to how I was treated. How can two Urologist's read a biopsy report, and yet not understand it? It just baffles the imagination. How can one be diagnosed with a bladder problem, yet go untreated for it for three years? The ignorant stupidity just astounds me. I'm only 58, and I feel like I was made a guinea pig, and I can't find a lawyer to boot.
absolutely! We regularly asked for bone scan. Not until bone pain did my husband have one. METS in several spots shown. Do not know why not done on a regular basis. Insurance does not want to pay . we are hoping for a new trial after Zytiga -xtandi-rafium 223. Not a candidate for chemo.! To weak. Medium progression in bone mets & PSA 92. PSA 112 in May & 87 in June & 92 July 5.
Mel, so sorry to read that your husband has received a poor report.
I debated whether I would write about the inequality of quality medical care, but decided that I would tag onto your post in the hopes that others will read. Please find the best Medical Oncologist who specializes in Prostate Cancer; preferably in academia research at a major medical school. In my opinion, these are the people who are truly cutting edge in the treatment of metastatic prostate cancer.
My History
December 2001, PSA at 4.0, Primary Care Physician failed to tell me, not did I ask.
December 8, 2002, Cardiologist ran a PSA test and it was 6.8.
March 3, 2003, Urologist finally does biopsy and a Gleason 7 (4+3) is confirmed. Immediately had a Nuclear Bone Scan and soft issue CT Scan.
April 22, 2003, Radiation Oncologist does a Nuclear Bone Scan and soft issue CT Scan and implants Palladium Seeds. PSA 6.3.
July 7, 2003, a different Radiation Oncologist administers 25 sessions of IMRT. Beginning Nuclear Bone Scan and soft issue CT Scan; ending Nuclear Bone Scan and soft issue CT Scan.
November 33, 2003, PSA 13.0. Nuclear Bone Scan and soft issue CT Scan. and Bactrim and Indocin.
February 20, 2004. PSA 12.6. Urimax.
March 17, 2004. PSA 25.2.
May 8, 2004, PSA 32.3. Nuclear Bone Scan and soft issue CT Scan positive with mets to L2 & T3. Lupron.
June 7, 2004. PSA 7.3 Meet with Medical Oncologist on recommendation from Radiation Oncologist or I could just choose to continue palliative treatment with Lupron.
July 5, 2004. PSA 3.0. Start six month chemo trial. Nuclear Bone Scan and soft issue CT Scan.
July 5, 2004 - January 8, 2005, Month PSA tests dropping from 3.0 to 0.5.
February 15, 2005 - August 25, 2010. 34 PSA tests. 16 Nuclear Bone Scans and soft issue CT Scans.
February 11, 2010, last injection of Lupron.
November 16, 2010 - November 19, 2016. 29 PSA tests. Nuclear Bone Scan and soft issue CT Scan.
January 11, 2012, PSA again undetectable. Started wearing a 4mg Androgen patch two times a week.
March 28, 2017 - July 24. 2017, 2 PSA tests. I expect the test in two weeks to also be undetectable. I use 4 mg of Androgen Gel twice a week.
I'll think of your husband in my daily Prayers as he continues to kick this bastard.
I am not sure. The oncologist said he will be on 10 mg of Prednisolone daily and take anti-nausea medication - he is on that already now because of the nausea from the last couple of weeks. I don't know what else they will give him. We will be in the hospital tomorrow morning to learn all about it.
I'm sure many here would agree that Paul made the right decision. You always have to consider the effects on quality of life when deciding on a treatment. In my opinion, the potential payoff if it works far outweighs the minimal reduction in quality of life. Knowing what I know now, I wouldn't even hesitate to do it again. He can always stop if he wants or needs to. Just take it one cycle at a time. I really hope it works for him. It's well worth trying.
Yes, Greg, that's true. He can always stop it if it doesn't work for him.
We have also gotten in touch again with the two hospitals in Germany that offer LU-177. That would be our last line of defense. But, you never know, it mightn't be necessary.
Here is for you and for everyone interested a text from the homepage of the university hospital in Munich, Germany, that explains what LU-177 is and how it works:
"This course of treatment is for patients with metastastic prostate cancer where, despite hormone therapy or chemotherapy, the disease continues to advance. By comparison to Xofigo therapy (Ra-223), patients can also be treated who have metastases outside the skeletal system (e.g. soft tissue or lymph node metastases).
Cancer cells, which originate in the prostate, generally carry the prostate-specific membrane antigen (PSMA) on the cell surface. This membrane antigen acts like a magnet as a docking site for specific peptides, so-called PSMA ligands (PSMA-DKFZ-617), which are radioactively marked (Lu-177-PSMA-DKFZ-617) with a therapeutically effective beta emitter (Lu-177). Since the protein molecule specifically binds to the PSMA of the tumour cells, the substance accumulates in the tumour after injection. The substance migrates via the bloodstream directly to the tumour tissue which leads to targeted radiation of the malignant cells.In this, the radioactive radiation only extends by just a few millimetres into the human tissue. With this RLT, a higher and more effective dosage of radiation can be aimed directly at the malignant cells than by external radiation therapy.
Diverse clinical studies have shown that with the aid of RLT, the tumour growth can be inhibited or strongly reduced. By means of this treatment, pain can be reduced, the PSA decreased and thus the quality of life considerably improved.
Lu-177 PSMA therapy can be used for patients with tumours with an adequate manifestation of the PSMA on the cell surface which no longer responds to other forms of treatment (hormone therapy, external radiation therapy or chemotherapy). Before Lu-177-PSMA-DKFZ-617 therapy can be carried out, the PSMA status and the indication for carrying out this therapy must initially be checked by means of a Ga-68-PSMA ligand PET/CT (standard at the Clinic of Munich University). Apart from further preconditions, which the physicians in charge must check individually before therapy with a Lu-177 PSMA, the patient must, in particular, still have a well functioning renal and bone marrow function. Further investigations (e.g. renal scintigraphy, laboratory tests and others) are generally required, all of which can be carried out at the Clinic for Nuclear Medicine at the LMU Munich.
Treatment takes place at our Therapy Department K0 and takes about 15 minutes (infusion of the radioactive material). Due to an accumulation of Lu-177 PSMA in the salivary glands, patients should be provided with cooling packs 30 minutes before and up to 4 hours after treatment, with which the salivary glands can be cooled and thus the blood circulation reduced. It is expected that this will achieve a reduced accumulation of radioactivity in the salivary glands. To reduce damage to the kidneys, intravenous infusions are administered directly before, during and in the days after this treatment. In addition, an adequate supply of liquids is recommended on the day of treatment and on the following days, since this can reduce the radiation exposure to the kidneys and the rest of the body.
Scintigraphic whole body radiographs and blood are taken in the days after this treatment so as to check on the storage of Lu-177 in the tumour cells and the degradation of the substance. After treatment, the patient must not leave the Therapy Department for 48 hours. After an observation time of around 3 days, the patient can be discharged from the hospital. After being discharged from in-patient treatment, the blood, hepatic and renal data must be checked in the laboratory after about 2 and 6 weeks. These tests can be carried out locally by a GP, urologist or oncologist.
At least three courses of treatment are generally required at 8 week intervals. To check the response to treatment, as well as for side effects and complications, follow-up reviews need to be carried out at specific intervals (e.g. PET/CT, scintigraphy). Further cycles of treatment can be frequently carried out with good response, respectively stabilization of the disease and continuing good storage in Ga-68-PSMA ligand PET/CT, insofar as the blood count and renal function permit.
Past results indicate that there is no reason to fear serious, acute complications. Despite the greatest care, side effects and complications can however occur with Lu-177 PSMA therapy. Since this therapy involves an individual attempt to heal with a drug that is not approved, the occurrence of as yet unknown risks, side effects and complications cannot be excluded.
The following side effects and complications are currently known:
General side effects and complications:
• Fever following the therapy
• Allergic reactions and even an allergic shock can theoretically occur whilst the substance is being administered (up to now, this has not been observed as yet for this treatment)
• Nausea, vomiting and loss of appetite
• Occasional slight loss of hair in the weeks after treatment
• In a few cases, changes to the sense of taste after the RLT have been noted
• Drowsiness and fatigue (can last for a few weeks after the RLT)
• Special side effects and complications:
• The number of red blood cells (erythrocytes), platelets (thrombocytes) and white blood cells (leucocytes) can decline after treatment. For this reason, the blood count must be checked 2 and 6 weeks after treatment. In individual cases, after repeated treatment, a long-term, in rare cases also a potentially fatal reduction to the bone marrow function with the need for a blood transfusion may arise.
• With repeated treatment, a restricted renal function may arise, which is why this must be investigated before any treatment. In individual cases, after repeated treatment, a permanent loss of renal function can arise which will necessitate dialysis.
• With repeated treatment, a reduction in the production of saliva with a dry mouth may occur. This may result in an increase in the occurrence of caries. Changes to the sense of taste may consequently occur.
• In rare cases (despite treatment with cortisone), in the initial 72 hours after treatment pinching effects may arise in the spinal region due to a temporary swelling of large, extensive metastases.
• In principle, exposure to radiation includes a risk of secondary malignancies, although these might arise, if at all, many years or decades later.
• Since long-term experience is not available, side effects may arise that are unknown at present.
• Important conditions for patients:
• On the day of treatment, several litres of liquids should be drunk so as to keep the stress on the kidneys and the radiation exposure on the rest of the body to a minimum (accelerated excretion).
• About 30 minutes before and up to 4 hours after treatment, the salivary glands should be cooled by means of cooling packs so as to reduce the circulation of blood. It is expected that this will achieve a reduced accumulation of radioactivity in the salivary glands.
• Unfortunately, when staying as an in-patient in Therapy Department K0, you are not permitted to receive any visits. Only in exceptional circumstances and after prior consultation with your physician, may you leave the department during the initial 48 hours after treatment.
• After you have been discharged, your relatives will not be exposed to any dangerous radiation risk from you.
• If you experience problems after treatment, irrespective of type and severity, you must immediately notify your physician.
Hi Mel, as you know I have had excellent bone mets results from my Docetaxel . In Paul's case I just looked up Docetaxel and liver mets and it seems my first reading is extremely positive - for liver mets (for breast cancer). I suggest you Google your question and see the range of answers from the medical profession. Breast ca. is akin to PCa, similar ADT therapy and similar chemo. Good luck to you both. David
Well, in fact, after reading all your answers here, I am kind of thinking that maybe the oncologist was a little too gloomy when he said, and this is a quote and he is answering my question: "So is Chemo next?" "I would even be saying to yourselves is that going to work?" But then he said in the next sentence: "You should try it."
I think that made particularly me very anxious; kind of thinking: Oh God, he doesn't have much hope. But of course that is only my interpretation.
And, in any case, everyone is different and responds differently, and so many of you seem to have a positive experience with the treatment, and Paul really wants to live and fight this - so, I think this is what we will do!!!
Paul said the other day jokingly: "I am willing to accept the spread into bones and lymph nodes. But liver? No, that's too much! The cancer has gone too far now!"
I feel this so much shows his spirit to fight this.
Quite separately I was with my Onco yesterday for latest fbc and PSA results. PSA still rolling @ 0.03 and other bloods best to date. Remember my 40+ bone mets gone after 10 cycles Docetaxel. Went for 1st time to Maggie's (a walk in coffee and cake centre at Charing Cross Hospital) to see what they do. Met female in full recovery from breast ca. 14 years ago. She looked about 16! While we chatted - and the centre had team of about 20 - a guy may age came in. He was terribly worried because he had been told he had bone mets 'everywhere' and couldn't believe chemo would help him. We swapped numbers of mets. I had recovered from twice as many. He was on his 2nd cycle. He went away believing his Onco had told him the truth. It made me feel even better. God bless you and Paul. We share our great times and our illnesses with each other and our friends. And brothers on this site, and sisters.
The oncologist's first sentence in response to your question seems strange to me. But I would take "You should try it" as meaning that he thinks the chances it will work for Paul are high enough to make it worth the trouble. Doctors are generally rather conservative (gloomy) in what they tell you about your chances. I don't know why they are, but I've seen it repeatedly. I've outlived what several different oncologists said about my life expectancy, by as much as 11 years & counting. A positive attitude & a strong will to live are really important.
Yes, I found the doctor's manner very gloomy. Don't get me wrong: I love and appreciate very much when people are direct, but I also think there is a difference between being direct and being harsh, and in this case it would seem to me that it was the latter. Imagine he would make such a remark in front of a very vulnerable or mentally unstable person and that person would lave the room and think "Ah well, I can try it but there is not much hope for me anyway".
The oncologist we saw today - one of his colleagues in the day centre - was very different. He, too, admitted that it was a difficult and challenging journey ahead but that there were cases like Paul who have responded very well to the treatment and that there are men who go on to second-line or third-line treatment and live a good few years with this therapy. This to me seems to be much more reasonable.
Mel, I'm really glad you got to talk with an oncologist who knew how to discuss this with a patient & spouse, leaving you better informed & more encouraged.
Many doctors consider themselves scientists, & totally lack the skills needed to conduct delicate interpersonal relationships with patients & their families--what be used to call "bedside manner." When this leaves people inadequately informed & unnecessarily discouraged, it proves my belief that doctors & other medical personnel should be hired, in part, because they actually care about people, understand that they need to provide "customer service," & have the interpersonal skills to do so.
Some docs seem to give worse case scenario. I never paid much attention to. Just do your research and forums like this.and maybe drug combinations are best in your case and above all make sure you are monitored closely initially [monthly] and keep us infomed. We might have to go down the same road and yes with a plan in place those feel good hormones will begin to freely flow. Always the best. Rocco
I wouldn't even ask the question "Is that going to work?" It's not a relevant question when considering your next step in treatment. It's not like you are doing something that is totally inappropriate for prostate cancer. So the only relevant factors in the decision are cost vs. potential benefit. Cost in terms of monetary cost and cost in terms of reduction of quality of life. Assuming this an affordable treatment for you monetarily, the reduction in quality of life is a low cost for this chemo. There are some really difficult chemotherapy regimens out there, but this is not one of them. Granted, it's not exactly a picnic either, but reduction in quality of life is minimal for the potential gain. In this case potential benefit far outweighs cost IMO. That's how I would make the decision. PS. I'm writing this in one of the worst days of my chemo cycle.
I am sorry you are not having a good day today, and I hope tomorrow is going to feel much better!
Yes, to ask the question "Is it going to work?" is maybe not a great one.
As for reduction of quality of life, I think that Paul's quality of life has been rather poor anyway; on top of the Zytiga side-effects and now recently the liver mets side-effects, the constant worry if now is the time to do Chemo or what other treatments may be out there... At least now we have a plan and now we know what we are going to do - for now.
Mel, I'm sorry you guys are in that situation. But if chemo is the only remaining treatment available, I'm glad Paul really wants to live (me too!) & support the decision you 2 made, to fight for Paul's life.
Mel and Paul, I have numerous liver Mets too. My Oncologist started me on Docetaxol and Carboplatin, I am on my 3rd cycle. It can be a tough road, is for me. But as my PSA is decreasing, I will stick with it, for as long as I can stand it. I spend the 1st week in bed, after the steriod works off (fist 48-72 hrs), 2nd week, still need to rest every day. If I don't listen to my body and get rest when needed, I pay for it the next day. Raw pickled Ginger helps with my dry heaves, vomiting and nausea. Good Luck.
I am so glad to have found somebody on this forum who has liver mets, too. I am just saying this as it seems to be such a rare thing. 90 % of mets are in the bones and lymph nodes and only 10 % are going elsewhere according to our oncologists.
I hope that the treatment is working for you. It sounds like a difficult journey, but like one that you are willing to take as long as you can.
Sorry, maybe I am a little confused today, but what is the other medication you have mentioned apart from Docetaxol?
Carboplatin is an older chemo drug, typically used for adenocarcinoma. Prostate cancer sometimes mutates to this type of cancer cell in the liver. I have not had a biopsy to verify it. But based on the experience of my Oncologist, she felt I should take it concurrently with my Docetaxol. You can find a lot about it by searching on-line, starting with Google. I will know more after my imaging (CT and bone scans) results on the 25th, if the liver mets reduced in size. Also, the radiation I had for my bone mets may have shrunk them, too.
From what I understand, Platinum-Based Chemos such as Cisplatin and Carboplatin are more useful for PCa with neuroendocrine differentiation. That often arises after along period of response to Primary and Secondary ADT treatments. It often shows in visceral and soft tissue mets as you noted. This chemo may be useful in Paul's situation.
I read an article about this recently. Here's a quote from it:
And while it rarely arises de novo, the amount of neuroendocrine differentiation of prostate adenocarcinoma increases with disease progression and in response to androgen-deprivation therapy.
“Neuroendocrine prostate cancer does not express the androgen receptor and it's considered clinically hormone refractory. With the introduction of new highly potent androgen receptor-targeted agents into the clinic, such as abiraterone acetate, treatment-related neuroendocrine prostate cancer is becoming an even more important disease to recognize.”
Beltran and colleagues have written that treatment-related neuroendocrine prostate cancer should be suspected in patients with castration-resistant prostate cancer who experience rapid progression with a low serum PSA, especially in the setting of potent androgen deprivation therapies (JCO 2012;36:e386-e389).
Patients with treatment-related neuroendocrine prostate cancer will likely not respond well to hormonal agents and may respond to platinum-based chemotherapy,” they wrote.
They point out that the adenocarcinoma differentiation caused from the ADT can happen within 6 months of initial treatment in some patients with these aggressive types. Secondary hormonal treatment is best skipped over and Cassodex (Bicalutamide) stopped because once you have mutations and the Androgen Reception is blocked the Zytiga and Xtandi that oncologist are prescribing like candy for CRPC actually feeds the mutations and thus more metastasis.
Nuero endicrine differentiation (small cell ) is very rare , I think I remember less than 2%. It can be easily checked with a Blood test , I think CEA,NSE,and CGA are the names of the blood test.
I've been doing some reading about this since I'm more or less chair bound from chemo
Here's something I found. Researchers are learning that this neuroendocrine differentiation is more common than originally thought. Here's an excerpt from an article I read.
Neuroendocrine prostate cancer is a high-risk, lethal subset of disease, often referred to as representing only two percent of all diagnosed prostate cancer. In fact, though, it probably occurs far more often because the disease is not recognized as different from metastatic castration-resistant prostate cancer. That was the word from Himisha Beltran, MD, Assistant Professor of Medicine in the Division of Medical Oncology at Weill Cornell Medical College, speaking here at the Chemotherapy Foundation Symposium.
Men rarely undergo biopsy of their tumors once those tumors have spread to bone or soft tissue regions of the body, Beltran noted. So while only a few prostate cancers are diagnosed originally as neuroendocrine prostate cancer, many cases that develop after adenocarcinoma has evolved into neuroendocrine prostate cancer go undetected. She estimated that as many as one quarter of patients who are dying of prostate cancer are dying from treatment-related neuroendocrine prostate cancer.
This makes sense to me. Seems like our ADT treatments are basically using the natural selection process by eliminating the hormone sensitive cancer which leaves whatever isn't hormone sensitive such as neuroendocrine cells.
Thank you for going into this subject so much. Although I am sorry that you are not feeling good at the moment.
I would also like to thank everyone else here on the forum who is messaging with me and making me aware of so many things. You are the reason why we are going to ring our oncologist today and ask if Paul could try the combination of Taxotere and Carboplatin. I don't understand very much at the moment except that it the combination of Taxotere and Carboplatin might work well in Paul's case.
My husband says: "Don't call them and ask them that, I am sure they would have thought of it and told us." But I don't want to rely on it. It is always good to ask every single question, even if you have the fear that you might get on a person's nerves or that 5they have too many other things to be doing.
The way I see it when it comes to treatment: is it's MY life that's on the line, not the doctor's. You have to be your own advocate, that's something we all learn in this fight. Don't be shy about it.
I agree, ask any question you feel you need to. Just remember, doctors have to know a lot and know about every kind of cancer and treatment, etc. We are specializing in one type so we shouldn't be surprised to find that our doctors don't know everything about prostate cancer. I can imagine it's got to be really difficult for them to keep up with all the advances in every kind of cancer and treatment and research that's going on.
But in the end, the patient is in charge of treatment decisions, not the doctor or anyone else. The doctor is one advisor on your team, but the patient makes the decisions. I've disagreed with my doctor and we've done it the way I want. If that's a problem, I'll get another doctor.
Usually doctors are reasonable and if you show them something that they aren't aware of, they'll look into it so they can learn.
As far as chemo treatments go, my opinion is you want to do something that has the highest likelihood of working from the beginning rather than the "trial and error" approach. Time is not on our side here. The cancer never rests. Of course the best way to understand the specific biology of your cancer is to do a biopsy. But that's a decision you have to make.
Yes, Gregg, I do agree. We have been trying so many different things along the way, and somehow the cancer has found ways to continue to grow. So it is time now to fight it with different tools. And the time to do this is now.
Strangely, I didn't get a reply from our oncologist regarding my email with regard to Carbobletin. Isn't that strange? I sent it on Friday, and when we saw him yesterday, there was no word about it.
It is something to really keep in mind, though. And after the next tests we will know if Docetaxol alone does the job. If not, I think we will insist to add Carbobletin.
Leading researchers at MD Anderson are labeling the type of PC your referring to as "AR-Indifferent:" Here's a summary of a presentation Dr. Ana Aparicio gave at ASCO-GU 2017:
Yes, well either that or the cancer cells just have such a need to grow that, once we hit them with the hormone treatment, they shift into different cancer.
Given the high frequency of co-alteration in PTEN and p53 in mCRPC, we generated conditional GEMMs based on deletion of either PTEN alone or PTEN plus p53 to obtain the NP and NPp53 GEMMs, respectively. Both NP and NPp53 mice develop CRPC, and cross-species gene set enrichment analysis (GSEA) suggests that they have molecular programs that are well-conserved with human CRPC. In preclinical studies, we find that the NP mice are highly responsive to tumor inhibition by abiraterone, whereas the NPp53 mice do not respond. In fact, the NPp53 mice display a marked acceleration of tumor progression following abiraterone treatment.
The majority of human prostate cancers are classified as adenocarcinoma with the bulk tumor cells showing luminal differentiation including the expression of AR and prostate specific antigen (PSA). Interestingly, all adenocarcinomas of the prostate contain some neuroendocrine cells (1, 2). Unlike the bulk tumor cells, the scattered NE tumor cells are usually quiescent. In contrast, an important histologic variant prostate cancer called small cell neuroendocrine carcinoma (SCNC) is composed of NE tumor cells that are highly proliferative and aggressive. Although SCNC is occasionally diagnosed in patients without any previous history of prostate cancer, it more commonly occurs as a recurrent tumor in patients with a history of adenocarcinoma who have received hormonal therapy. It has been suggested that the novel drugs abiraterone and enzalutamide (formerly known as MDV3100) that further inhibit AR signaling will induce even more cases of SCNC.
First, briefly, about your fellow PC traveler/victim. The night after my husband’s diagnosis, we were back at the urology clinic where he was administered two abdominal shots of Firmagon. We are grateful to the urologist that he stayed late and didn’t delay. The PSA dropped from 1500 to 900 within a month. We were transferred to an oncologist and immediately began the generic versions of Taxotere, Zometa, Neulasta, and Prednisone. (We were faithful about ice cups for the fingers, packs for the feet, and crushed ice for the mouth.)The steroid was reduced from 10 to 5 and then to 1 mg. Not sure we would do that again but were scared because of our brother’s huge weight gain from steroids while treated at Mayo (brain tumor, deceased). Now, of course, we would take Prednisone if we are fortunate enough to be prescribed and can afford Zytiga.
I’m writing to encourage you regarding chemo side effects which, of course, don’t all happen to everybody. There was fatigue for my husband but no nausea. For that he was given 100 mcg of Granisetron HCL. Each of the six cycles, however, his legs became heavier and with more fibrosis. Nothing had been said to us about the possibility of lymphedema, and I’m not sure what could have been done even if we knew. My husband hadn’t had surgery or radiation so neither of those was causative. We believe the culprit was either the transrectal ultrasound or the Taxotere itself. Lymphedema is surely his #2 curse. Liver mets, however, are worse! Docetaxel did eliminate many, though not all, of his bone mets. Most remaining are in the pelvis.
Muscle and memory loss are the worst results of Lupron. He is fighting just as Paul is–still exercising in the garden daily and reading “The New Yorker” pretty much from cover to cover as he has for as long as I can remember. (I read it selectively. Right now I’m “into” PC!)
What a supportive community we have at Health Unlocked and Inspire. We are grateful and learning, as our middle school students often wrote, “a lot!”
Thanks to all again. We send our prayers and well wishes to you and Paul.
Combining Taxotere or Jevtana with Carboplatin is benefical because mets to visceral sites are often more neurendocrine in nature. My father actually developed liver mets while still taking taxotere with the popular ADT 3 treatment per the "Charted Trial." He then went with Jevtana + Carboplatin plus Dexamethasone and has tolerated these drugs much better. He isn't a candidate for the secondary hormonal treatments because his cancer has little Androgen Reception plus a P53 mutation. It may be of benefit to have a biopsy of the liver to find out the best treatment options. Prostate cancer isn't just one disease type and many "respected" GU oncologists don't have a grasp of this yet it seems. The quicker the disease can be divided into sub-types the better it will be for patient outcomes.
We will be on our way to the hospital shortly. A little nervous, but mainly focused and trying to stay with what is in this moment.
We spoke to my aunt yesterday. She is from Germany. She told me about people who combine Methadone with Chemotherapy now there in Germany to increase the effectiveness of the Chemotherapy. There is something in Methadone that makes the Chemotherapy more effective. I read up about it, of course, and the results are stunning. So we have decided to get Methadone now either through our GP here in Ireland or, if it can't be prescribed here and is only for pain patients, we might have to get it from that doctor.
But we will see how this Chemo is going to work today.
Just want to let you know my husband was diagnosed in October 2015 with a PSA of 1262, bone mets and liver mets-too many to count. He was immediately started on Lupron and doxetaxol and carboplatin. Had a great response. Became castrate resistant in July 2016, and was put on xtandi in December 2016. He is doing very well! Last PSA last week was .32. Good luck with this chemo. Please ice hands and feet to prevent neuropathy! Just wanted to encourage you!
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