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Advanced Prostate Cancer
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Still riding the Jevtana train

Jevtana is now showing signs of not working my psa just went up again this time from

32 to 36 i just took cycle 22, one every three weeks. this is the last good option i am being told by my cancer , Oncologist i figure i will be off of Jvetana soon and everything beyond that is a roll of the dice. so just like you guys i keep rolling along the best i can

good luck to us all,

jack

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Jack , Thanks for posting, It is good to hear from You. 20 cycles is really a lot. I will start cabitaxol thursday, but my psa is way higher than yours. Did you have any side effects from cabitaxol? Did you do nuelasta? How was that.

Thank You Jack, and glad to see you posting.

Dan

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Hi Dan, Chemo sucks, but it is doable it wont kill you, just make you feel terrible for one week. in addition to the chemo i take dexamethasone for three days durring chemo week

i then take prednisone on days between treatments, and then a whole host of pain meds

but i dont have much pain, but yea i am tired, i feel week, nausea is a problem, loss of appetite, food does not sound good to me although i may feel hungry i cant decide what to eat, but i keep trying, we dont give up, peace to you .

jack

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Jack, thanks for your reply, I took dex 3 day while on docetaxol and it worked great for me, I wonder why the just want me to do 2 5mg prednisone for cabitaxel, I could always ask for it. That is about what I thought SE would be, so I will be ready. Did you have to do nuelasta? May try ice pack on head to avoid baldness, as my hair grew in nice after docetaxol, and even to original color. I wish you the best Jack, I will be here.

Dan

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yea, i did not do nuelasta, i do not know what that is and i try not to care to much about how i look, ha ha. im ok so far been doing better than some and not as good as some, i picture myself as being in the middle between complete failure and controllable cancer, it is a rough ride, i have really been thru the ringer with this one

and then add on the flu twice and common cold three times no doubt it is hell

butt its all we got, at least i have about 50% good days and the rest is awful.

thanks and carry on my good man.

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For Me the dex day before day of and day of kept my whites high, since I have had extensive radiation to bone marrow in hip and I hope whites recover without nuelasta. I am used to rough rides haha. I really like your positive attitude you are an inspiration to me. I will keep you posted how it goes tomorrow’, I am curious to see if I can stop my hair from falling out, but if it does , I will be ok, its just part of the game.

Dan

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Hi Mr Jack,I think small 4 point bumps in psa mean little at this stage, scans mean more, Will hope for a lower psa for you next time. I had Javenta Thursday, with a nuelasta onpro shot, felt some bone pains for a day after nuelasta,but no pain today ,general side effects seem almost less to me than docetaxol, time will tell, So it looks like I will be riding that train with you now. Keep the faith.

Dan

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thanks Dan, good luck to you, let us know how you do, and i will let you know how i am doing. in the next few months i will be moving on to some other treatment as jevtana is not working as good as it used to.

jack

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Sorry to hear that your oncologist think that you are running out of options.

If your cancer is PSMA positive it can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease.

There are at least 3 clinical trials going on in the USA for castration resistant metastatic prostate cancer.

Please search for prostate cancer and lutetium 177 on clinicaltrials.gov

The first things is to determine if the metastasis are PSMA positive.

A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA .

Please search for Gallium 68 and prostate cancer on clinicaltrials.gov

My treatment was in 2016. I had multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.

The treatment can kills cancer cells castration resistant and hormone sensitive in the bones and in soft tissues. Very well scientifically documented treatment.

Anything please let me know.

best wishes

Raul

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ok sir, i will look into that, my doctor is looking into some options for me as well

i will send him and email and ask about that, my problem is my doctors can only do

standard treatment only, he said Jevtana is my last "good" option!

so i am going to take another couple cycles. Jevtana does work for me.

the side effects are a real drag i feel flu like symptoms for a week after receiving the dose

i have cramps, constipation { make sure you have on hand and use a laxative }

drink water, eat several small meals a day, i have lost my appetite and have to force myself to eat , you will feel better with a little food on your stomach, what ever sounds good to you

i like bland food, no greasy junk. take lots of pain meds, and rest in bed.

peace to you God bless us all.

jack

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Hi Raul, i did see my Radiation Oncologist and he was not very enthusiastic about giving me radiation, my cancer is all over my body

they cant spray my whole body with radiation, so i am stuck with trying to manage the progression. i had a robotic prostateectomy in 2011

ive been around here for a while diagnosed in 2011 i am on HT too.

peace dude.

jack

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i have asked my onc doc to look into this type of treatment, ill let you know how it goes.

jack

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Hello: where did you get this treatment. USA of Germany. Thx Stan

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All he said is that he is close to the end of the effective use of Jevtana as a monotherapy. That is not the same as "running out of options" as you yourself go on to note.

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I understand that your cancer can not be treated by conventional radiation. The Lu 177 treatment is a nuclear medicine treatment. It is true nuclear medicine is part of radiology but radiotherapists in general are not familiar with nuclear medicine treatments. You need to talk with a nuclear medicine person.

Patients with large amount of bone metastasis have been treated with Lu 177 in several countries, like Germany, Australia etc. It can be done if planned with precision so they can provide an amount of radiation along 6 treatments that could attack the cancer and not kill the patient. It is true that in this situation the patients could have complications due to effect of the radiation on the bone marrow , but they usually are not worse than the effects of chemo.

Best

RAul

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The Lu-177 may be a good option as per Raul80--Also have you been gene mapped to determine what Mutations you might have---There are targeted drugs that work to allow DNA repair. It is worth knowing if you have mutations, there may be Clinical Trials as to Targeted Drugs for each Mutation. Many Mutations we have nothing--but common ones we do.

Nalakrats

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ok, interesting, i have emailed my onc doc. and he will look into it.

thanks

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You cannot almost not get into a clinical trial, today, unless you have been gene mapped--that is the first question they ask today.

Nalakrats

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hello, my onc doc says to me that "gene mapping" is not prime time and not considered conventional medicine yet, not available to me thru my provider, like before some treatments are not available to me, and also any new changes are measured available in decades from now not years, nothing happens fast around here except, well you know...the end.

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Get the real Gig--go to Foundation One Web Page get their 800 Number and call and speak to an Advocate. They will tell what they do, the importance of it, and they have access to all insurance info----Your Doc. is the one behind the times--you almost cannot get into a clinical trial today without being mapped to know what mutations you have, if any.

Nalakrats

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And if on Medicare--it is paid for.

Nalikrats

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A trial is designed for a specific and identifiable class of patients. This class is identified by the inclusion and exclusion criteria. Some trials are aimed at patients who have certain known to be carcinogenic or suspect genetic mutations. These trials require that the applicants for that trial actually have those genetic mutations of interest, and that requires knowing more about the applicant's genome. Otherwise, no.

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I just had Chemo (Jevtana) #23 today psa went up from 36 to 38 in one month

doc said we will have to stop Jevtana soon and try some old nuclear medicine soon

I will report back next month, thank you for being here and helping me.

jack

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Jack, In my mind 36 to 38 is stable, keep riding the train.It would be a doubling time somewhere in the area of 1.5 years, which is great for us.You have done amazing, so many do one or 2 Jevanta and cannot recover blood numbers, but it seems to work for you. Have you had any recent scans?I am nervous going in for my 2nd javenta on Thursday, hoping blood numbers are good. It is thought thought chemo can resensitise the androgen receptor to xtandi and zytiga, but in my opinion and I know in the opinion of my MO a 2 point bump at this point is stable, and I would keep going with it. What nuc med is he thinking of?

Dan

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soon I will be going to Xofigo Radium 223, and I'm worried about the side effects

and the fact I am getting that much closer to the end, I figure I have about one good year left then a year of a painful suffering death after that, that's my guess from what I can tell, I'm running out of time and the will to fight.

thanks and good luck / best whishes to all.

jack

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Best wishes to you Jack, The xofigo is proven to extend life and reduce pain, I think the side effect profile is less than chemo, one concern is maintaining white blood cells and platelets, but if you maintained those through 23 cycles of chemo I think you will be fine. I hear you , I am in same boat as you. They say sometimes after a lot of chemo the andogen receptor can resensitize to zytiga and xtandi, That is something to talk to the doc about. I am surprised if your insurance will pay for Javenta(the most expensive of all treatments) that they would not let you do genetic testing , that can actually be done with a blood test. Foundation 1 charges 5 grand for genetic testing , and will forgive the bill if you can not pay.Never give in Jack , I am right here with ya.

Dan

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I think that the side effects that are the worst, that make you wonder if life is worth living, is pain, then fatigue, then isolation, then adhedonia - loss of interest in pretty much anything.

The test for anhedonia is an almond joy candy bar. If you don't ponder whether you should or should not eat an almond joy, then maybe its time for an SSRI. Obviously my (not that serious) opinion.

As to fatigue, I take naps, but exercise is helpful they say, and coffee, and doing things that you have always wanted to do. Shave your head, finally. Go to Albany!

Pain. There are specialist who are working on this. There are even people working on long term intractable pain. I talked to a guy last month in Rochester Mn who has some strategies he is researching at Mayo.

And death from systemic bone mets does not have to be painful at all. My dad died from this, and as far as i could tell, did not have any pain. The bones just stopped making blood cells.

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thanks Dan59, I'm still on jevtana for probably one more cycle, my psa now 38. man my doc seems to get distressed or mad anytime I try to talk to him about these outside treatments we cant discuss anything "non standard" or outside my medical group

his view is that he has all necessary standard protocol, standard treatment medicine

he sees no reason to go outside and by now I'm wore out and ready to go by by

I just want a pain free easy way out. no pain for me....carry on. don't forget to eat several small meals a day and drink water. peace out.

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If you doc gets mad at you for talking about going to other doctors, don't talk to him about it. That's a pretty easy problem to solve.

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Jack all my blood numbers were good for tomorrows Jevtana. PSA was up from 123 three weeks ago to 143 this time. I hear what you are saying,He might think differently if it was his life on the line.Fortunately I have a local MO who is female, this bypasses the male ego “I know more than anybody thing” She is already told me we will do whatever we need to do to stay in the battle. Docs will usually only go by standard protocol at a Hospital. Unless you go to a private practice like Prostate Oncology specialist in Marina Del Ray with Dr . Sholtz. Or Liebowitz in LA, I think you are fortunate to have these options were you are. They can think out of the box. I say give Dr Sholtz a call, llet him know what is going on, and ask if he will help. He will have a genetic test done immediatly, and go from there. I am Eating small meals. You can see why I think your psa is stable when mine jumps 20 points to 143 in 20 days on treatment haha. IMO the three tenents of if a therapy is working are 1. If it reduces disease,2. If it maintains stability.3 if it slows doubling time. Keep Me posted, Peace Out

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Hi dan are you at City of Hope?

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No, I am in upstate NY

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Your treatment path similar to my fathers. I was curious to see if you were out here!

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Hello DD, I have been fighting this thing since 2011 when I was diagnosed and had a prostatectomy , then we discovered that my cancer was spread throughout my body, so we do other treatments like hormone therapy and chemo, so we keep going with what ever we can find to fight cancer. I am not happy and I am afraid to die but I guess its just my time, this is how it is one day at a time, my next treatment may very well be radium 223, I'm not quite there yet but my oncologist says that is one option there is no cure for me only treatment to extend my life, but my quality of life is getting pretty low and I am looking forward to getting it over and ending this.

don't worry I am not thinking of rushing it any, I find this site and the people here very helpful. thank you, have a good weekend.

jack

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Most of NY is "upstate", except Long island. But I imagine you mean that you can see the Catskills from your porch.

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Martin, I am well North of the Catskills, I can see the Adirondacks from my Porch.

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Jack here is a safety profile of Rad223 I found today, looks pretty good.

europeanurology.com/article...

Dan

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thanks Dan59, what does that mean in a nutshell? that's a lot to read, let me see what I can do to figure this out.

thanks

jack

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Here is the conclusion “This updated final long-term safety follow-up ALSYMPCA analysis shows that radium-223 is well tolerated in CRPC patients with symptomatic bone metastases, with minimal nonhematologic AEs, a low incidence of myelosuppression with long-term preservation of hematopoietic function, and no new safety signals.”

To Me it means, that it has a lower incedence of bone marrow suppression, and low white Blood cells,low reds and low platelets than chemo, and that it is better tolerated than chemo. I am no Dr. ,Or expert, perhaps others will comment.

Dan

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thank you Dan59, ok so I guess its supposed to be tolerated well , that is good news, and from what I see, they only give it to me six times so the whole thing will give me six more months of life, ok ill take six more months of sunrises and sunsets, thank you Dan I appreciate your helping me , your a good guy Dan59, thank you and peace to you, enjoy your weekend.

jack

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Jack, I am sure you will have more time than that, enjoy those sunsets and sunrises. Enjoy your weekend.

Dan

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Still on the train, Had labs today. WBC10.7, RBC3.7, platelets235.and liver good alk phos 91.PSA was up 20 to 143 last time after 1 , now down 20 to 123 after 2. It looks like I will get my Jevtana infusion in the morning. Side effects, It just makes me tired. How are you MrJack?

Best to all

Dan

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Hi Dan59, I'm o.k., I just took chemo cycle 24, my psa was up 20 points to 58 now.

I'm just trying to adjust my mindset to accept my fate, I think I feel ok.

I'm doing some reading and attending some group therapy support groups.

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Have you tried adding carboplatin? There is a small study on Cytozan, It was from a while ago,but my MO mentioned it today, it was a study by Glode et al. Have you ever tried estrogens?that is also a possibility. Also there is a guy on another blog, that after failing jevtana he retried xtandi and after 6 weeks psa fell from 4500 to 2600. Maybe Tall Allen has some good ideas, He has lots of good info. Until I got the latest psa I was contemplating my fate, but now with a drop I get three weeks to ignore it,best to you MrJack

Dan

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