Greetings: I am now getting treated with PROVENGE, as I am Stage 4 with mets to lymph nodes and one bone (hip). I have posted my whole history since initial diagnose in 2008, on the cyberknife.com website (in the "patient forum" section, then look for "prostate" posts, then look for my posts under the title "Cancer has returned after successful cyberknife"). Cyberknife treatment involves 5 one hour sessions of focused beam radiation. I don't want to repeat the whole story here, but let me mention I am taking or have taken LUPRON, CASODEX, XTANDI, ZYTIGA, and KETOCONAZOLE. Also please google PROVENGE for more details. Regards to all:
Ron Pavluvcik, Shelton, CT USA
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Yeah, you're right - I felt a bit chilly when doing the first part of the PROVENGE treatment a week ago, the so-called leukopheresis where they had me hooked up to a machine for almost 3 hours and extracted my white blood cells....and I DID ask for a blanket....but overall not a big deal...felt a bit queasy, but recovered within 30 minutes.....drove home myself which was 60 miles away.....back to normal within an hour......
Can you tell us your current PSA? Have you started the Provenge while the hormone treatments are still working, or has ADT completely failed? I ask because I suspect that the immune system enhanced by Provenge would have a better shot at fighting cancer weakened by ADT than at fighting cancer that has no other real enemy but the immune system.
However, I have no scientific evidence for that, I'm just thinking about the recent experience of combination therapies in the CHAARTED and STAMPEDE trials.
Alan: I have been on ADT - LUPRON - continuously from about 2010 to the present...a 22.5 mg injection in my butt every 3 months.....as a result, my testosterone has been very low for almost all that time...below 5, which is very good....I do have this one unusual side effect from the ADT - an uncontrollable to buy pretty colorful scarfs and big handbags when I go to the mall..it's the darndest thing ...seriously, my PSA was around 90 as I recall in May and June this year, then dropped to 60 in July/August soon after I started with the KETOCONAZOLE, but shot up to 125 a couple of weeks ago...not sure what triggered it, although I have been off all other drugs since early April when the mets to lymph nodes was discovered...since then I have struggled to get the PROVENGE treatment, which I did finally last Thursday Sept 28...once again, my whole story is available on the CYBERKNIFE website in detail from 2008 on...
Ron, when you do the keto do you fast for an hour before and an hour after and take it with an acetic drink, Cocal cola being the most acetic drink, I know thats how we did it back in the day. I have heard that provenge can help other drugs to work, i wish you the best with that.
To Dan59: No, my doc - a basic Oncologist from Yale New Haven Hospital (not too shabby) here in CT did not mention the Coca Kola to me..I will ask him about it.....(i prefer Pepsi if that will also work!).... regarding PROVENGE that I just started last week, as I said I still have 2 more treatment cycles, during October 2017, and from info on internet it appears PROVENGE can take a long time to show results, like 6-12 months...so I may have to start up with chemo soon....also: I have recently heard that there is another new treatment caller LUTETIUM 177 that is showing great success in 2/3 of men treated...it is an injection of radioactive material....google it....Cornell Univ Hospital in NY is involved.....also available in Germany and Australia....in clinical trials only for now I believe...a bit pricey, around $10K US dollars, but just one or two injections....Ron
Ron here is a cut and paste from the old hormone refractory website on why to take an acetic drink with keto, much of it is out , coke and pepsi being the most acetic drinks
The normal dosage is 1,200 mg of ketoconazole/day, 400 mg (2 tablets) every 8 hours. The 8 hour interval is due to the pharmacologic half life of ketoconazole.
Take it on an empty stomach unless you experience nausea. You might have to wait up to 2 hours after eating before your stomach is really empty before taking ketoconazole. This varies with the individual and the food ingested. Waiting to eat for an 30-60 minutes afterwards allows full absorption of the dose of ketoconazole. Take the ketoconazole with an 'acidic' drink such as diet or regular Coke, Pepsi, 7Up, orange juice, grape juice, apple juice, and tomato juice are all possible drinks. Avoid grapefruit juice as this can greatly increase blood levels of ketoconazole potentially leading to serious complications.
An empty stomach and the acidic drink are necessary for the most efficient absorption of the ketoconazole. The HC is normally dosed as 20 mg with breakfast and 20mg with dinner. Too much HC can result in ankle edema or worsening diabetes and reducing the dose to 20 with breakfast and 10mg with dinner or even 10mg/10mg is then suggested. Too little HC might show up as increasing fatigue.
If HDK is discontinued, then HC is tapered off over 2 weeks and not stopped abruptly.
Anti-acid medications and H2 blockers must not be taken with ketoconazole or else the acidic environment will not be present for maximum absorption.
A Clinical trial has shown that 62.5%(50% PSA decrease) of patients may respond to HDK(1). Some can expect a PSA decrease of 79-90%. The median duration of response was 3.5 months, with a range of 3.3 to 12.8 months in Small et al. (J.Urol., 1997)(1). However, there are cases of responses lasting in excess of 5 years.
Possible side effects include nausea, body rashes, hair loss, headaches, weight gain, and dizziness or disorientation. Ketoconazole in high doses creates some risk of liver function damage and a complete blood analysis is essential before embarking on HDK, and should be continued at regular intervals while on the therapy.
Ketoconazole has good efficacy in prostate cancer, but potential side effects and drug interactions require close monitoring. For example, ketoconazole can actually increase blood levels of chemotherapy (i.e., Taxotere) via the Cytochrome p450 proteins.
In summary, HDK + HC is a viable treatment for suppression of PSA and PCa after CHT is no longer effective.
References
(1) Small EJ, et al, "Ketoconazole Retains Activity in Advanced Prostate Cancer Patients with Progression Despite Flutamide Withdrawal," The Journal of Urology, Vol. 157, 1204-1207, April 1997.
Thanks for the detailed lowdown on the KETOCONAZOLE I am taking....all my Onc doc told me when he prescribed it in June, was "try this...we used to prescribe it in the old days, and sometimes it helped out"....he has me taking 1200 mg daily as you described.
ncbi.nlm.nih.gov/pubmed/748... here is a study I found, on taking acetic beverage , it increases absorption , and thus response,Its how we all did it in the old days
I only see one trial of LUTETIUM 177 , and that is in California, do you know of anything on this, or if it was approved, the results from the Sloan Kettering trial looked good, but that trial is over. Is Dr. Dan Petrylak at Your Yale cancer Center, He is one of the most prolific researchers in PCa there is.
Someone already getting the LUTETIUM 177 treatment, has recently contacted me to say it has worked for him, reducing his PSA and tumor size, and now he is getting a second dose. He had to go to either Germany or Australia to get it, and he chose Australia. Something about never seeing a kangaroo up close before. And he does not like VeenershnitzelI.
I think I have almost enough frequent flyer miles to get from NYC to Chicago. So I may have to buy a Maserati with my United Airlines Visa card to get the miles necessary to fly to Germany or Australia. (First I would have to get my credit limit bumped up from the current $1,000). I'll have to make a payment quickly to improve my credit score, because I just got back from Macy's after their Happy Halloween handbag sale. It's that damn ADT Lupron therapy kicking in again.....
Yup - that's the stuff....Lutetium 177....a radioactive injection....a patient has to be quaranteed for several days after the injection, until the radiation wears off...then they can go home....like I said earlier, one patient contacted me and said it lowered his PSA and shrunk his tumors....so I may be either entering the clinical trial in CA or TX, or traveling to Germany or Australia where the treatment is already available...maybe we can get a bunch of guys to assemble in the middle of the country, say Chicago or Denver or Dallas, and then charter a big jet to take us all to Germany or Australia.....
Ron wrote: "PROVENGE can take a long time to show results, like 6-12 months...so I may have to start up with chemo soon..."
One problem to be aware of is that chemotherapy attacks rapidly dividing cells. In addition to the tumor cells, that can include hair follicles (causing baldness) and stomach lining cells (that can cause nausea). More importantly, it can also include the bone marrow that produces the white blood cells of the immune system. So it's possible (I'm no expert on this) that chemo would interfere with the usefulness of the Provenge.
There was a clinical trial of Provenge administered AFTER chemotherapy that showed significant benefit as compared to chemo alone. See: news.cancerconnect.com/addi...
I'm speculating here, but I think it's something to ask about in hopes that your oncologist knows more about this issue. If you haven't finished the Provenge yet, but you are pretty sure you'll need chemo, ask about whether you should get the chemo now and finish the Provenge injections after. Alternatively, ask if there is a waiting period after the Provenge before chemo should be started. And of course, ask if my whole premise here is right or whether Provenge and chemo work fine together whichever is given first.
Alan: Thanks for the additional info about PROVENGE and chemo....I will follow up on it.....one problem with suspending the last 2 doses of PROVENGE scheduled for this month (Oct 2017) is that I have this darn catheter sticking out of my chest, and I can't wait to get it taken out...I played golf today and as I was advised by my doc, all I could do was chip and putt...no hard swings....didn't want the catheter to pop out on the golf course and bleed to death right there on the ladies / old folks tees .....I do recall when my Onc recommended the PROVENGE, that he said chemo would/could be given later....I have to find out how much later, per your comments....
Welcome! It's nice to meet another guy who's been on some similar treatments, and who knows what it's like to live with some high PSAs. Good luck as you continue with your Provenge. (If in doubt, stay hydrated and eat some Tums. Might lessen any transient effects you may get from the returned blood with the anticoagulant agent used inside the machine as you are getting your leukapheresis procedures.)
Hi Charles...thanks for checking into this blog.....yes, we have had some similar treatments...except I had the XTANDI for 2 years in 2014-2016 or so, before the PROVENGE which I am just getting now, the reverse sequence of you...the XTANDI worked great for me for those 2 years, keeping PSA lower than 10, then it stopped working in the fall of 2016 and I switched to ZYTIGA which did not work at all...I stopped the ZYTIGA after just a few months....thus, as is often the case with prostate cancer, people respond differently, and docs sequence the treatment in different ways.....not a consensus among docs on best treatment sequence....the cost of drugs and insurance approvals also enter into treatment decisions......I have been lucky, in that my Aetna Medicare covers most of the cost, and the Prostate Cancer Treatment network/organization also helps out with the costs....good luck to all...Ron in CT......
Yes, my doc keeps suggesting I will have to start chemo soon, after the PROVENGE treatment is done at the end of this month... so chemo probably by end of 2017 or early 2018...I have always dreaded the possibility of chemo because of horror stories of side effects (nausea, extreme fatigue)...I don't care about any loss of hair....but, in recent months I have been reassured by others the chemo usually involved - TAXOTERE...isn't that bad....and now that there are no other easy options out there, I will probably reluctantly do the chemo soon.....while I investigate the new LUTETIUM 177 radiation option which I just heard about......google it......good luck, Ron....
Glad I found this Forum. Ron Pavluvcik, my brother, used to come here in 2017 and earlier. Sadly, I must report that Ron Pavluvcik succumbed to his cancer on December 4, 2018.
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