I was following a trail of links regarding new and developed radiotherapies for advanced PCa. I found a new term that I had not seen before: Financial Toxicity. The one paper said that higher FT was linked to more aggressive cancers. Well, DUH! I've not seen anywhere where the cost of treatments went down when the aggressiveness went up. May be I have missed something.
In any case, FT is definitely an issue with me and my household. I'm not willing and in a sense unable to spend the money that some are to treat their PCa. Mine is aggressive and I have some challenging issues that make it worse than just the stats would indicate. It is possible that I might live longer if I had more money to spend but it would definitely have a destructive effect on my remaining QOL, and on my wife's QOL. This is not about "can I find a better therapy?". It is "can I find a better therapy that I can afford?". And on top of that, what are the odds that a "better" therapy would actually prolong my life with an acceptable QOL.
This can be a huge problem for some of us. At the very beginning of my trip down this road I assured my loving wife that I would undertake no treatments that would put her a dire widowed retirement situation just for the potential of 'maybe' living for a few extra months. That would make zero sense to me. I received no argument from her. She completely understood my viewpoint.
This is what the cost of drugs and treatment has come to. With limited funds available, it has also pitted the needs of the young vs elderly. I don't know whether or not the more socialized medicine practiced in other countries is any better. My wife and I have had the funds available talk as well. Just watching the news each day demonstrates to me that we do not live in a humane country.
My wife and I are in total agreement too. And she is not a money grubber trying to keep it all for herself. She is a very generous person. When a clinical trial says it was successful because the mean survival rate was two months more with the trial therapy but on by the way it will cost you a hundred thousand dollars. I'm exaggerating but all the things people on here are chasing have to add up to that range of numbers. I don't begrudge anyone from doing that for themselves though.
The first use of that term I read was related to Zytiga. A Dr in Chicago determined 1 pill with food instead of 4 had the same efficacy. It was added to NCCN guidelines specifically as an option for financial toxicity though the terminology may have been slightly different. Now that the drug also has a generic version its price has come down considerably. Like it, older drugs that were once cutting edge can often do some good and are very inexpensive now, like Casodex. Newer drugs will follow suit in time.I hope you have success and find a way to manage your disease with what you have. Many drug companies offer assistance directly so you may just need to find what those with have don't bothered to look for.
There are a number of ways to deal with this issue... If it is cost of meds, then companies will usually provide a years worth of meds via financial assistance program.. someone mentioned taking abiraterone with food... stretch the meds out for an extra 3 months with each monthly refill...if it is a radiological issue, then depending on your metastatic state, there are clinical trials for those with oligometastatic disease as well as polymetastatic disease... There are drugs sold in India that are far less expensive...
Most hospitals, clinics have a charity care arrangement for those who are financially challenged...
May you get the treatment you need without breaking the bank...
One of my main, if not the most important, impediments is that SOC in the US is for ADT to start, and if you are hormone sensitive, you can only get ADT (so far as hormone related therapy) and not get any castration-resistant meds - at all. The US pharmaceutical companies will not violate this FDA mandate. I have looked at multiple trials and my MO, and the other MO's at this big clinic, are also looking out for me. One that at first glance might have worked was one in NYC for oligometastatic disease but the absolute max of mets was 5. I have multiples of 5.
Every other trial for new meds, and even radiological therapy, I have seen require ADT as an adjuvant med during the trial. If they have one set of men who will be the ones who do not get the new med they will still be required to get ADT concurrently. The other track who will get the new med are also required to stay on ADT.
I got my Hepatitis C cured (100% no virus detectable for many years now) with a new set of meds, of which there are newer ones, which were amazingly effective, but very expensive. I asked for assistance by the drug maker and they provided the med for a monthly $5 copay. I could certainly afford that. But I can't pursue that if they won't allow meds unless ADT is concurrent.
I cannot afford international travel even if many expenses are subsidized. I have not seen any that would make much of a dent in these "other" costs. And, that also applies to US trials which require you to be local for the duration of the trial, or, frequent travel to get labs, scans, other procedures and observations at the trial clinics/hospitals. E.g. the one for oligometastic disease which was in NYC. I looked in to getting an exception for local labs, etc. and it is required to be there for those so they can maintain strict consistency to make the results valid.
Travel to Mexico used to be far cheaper but it is now on par for US for places to stay, food, car, etc. Air fares are still relatively inexpensive. I spent 18 months in Mexico on our sailboat in 2004-2006 so we enjoy the country and the people, and the medical care there is excellent if you just look for the right hospitals/clinics/doctors. Many, if not most, of the MDs/MOs are US trained, at least partially like for their residencies, schools, etc. And they speak English very well. We felt very safe there as well although you have to pay attention. NYC would be a much higher safety risk than most places in Mexico.
I do have a significant bias against India although that may be misplaced and misinformed. The culture and interpersonal communication expectations vary widely. My wife worked for an Indian owned consultancy/software company and she was constantly frustrated. On the other hand, there are many, many Indian professionals who have high level professional positions, including in hospitals and all over healthcare. I am 100% not biased by ethnicity, race, skin color, or other "vices" that many Americans carry around. I have traveled widely in the old days when I was traveling professionally and when I had the funds to travel on a personal basis. My graduate business degree is in International Management. Yet I find the cultural differences in India to be almost insurmountable for my expectations. I don't find that in expat Indians in the US as they have adapted in many ways to what I expect in the US and other countries, be they first, second, or third world. And the travel expenses would be on a par with any other country overseas.
Canada would be much easier if it were on the western side. For some reason I haven't seen Canada listed as a major destination for PCa therapies. That may be due to their type of medical system, which is similar to several European countries where healthcare is significantly subsidized. And, the visa requirements have become much more onerous, even before Covid. We used to travel to BC frequently and have basically not gone for several years. It is also quite expensive so far as living costs. And most of the major cancer care clinics are on the eastern side. Some one here may have had different experiences. All I can relate is personal experience. Vancouver is only a 2 hour drive from here and is a lovely place to visit and the Canadians are friendly with excellent training and experience in the medical fields.
So I have not been slack in looking at going to other countries to get therapies. I have to admit I find it hard to evaluate the various levels of training and expertise in some foreign lands. And I am sure there are excellent centers in many countries. If the FT would not be a big problem I would research this more, i.e. do my due diligence.
I also have a problem in trusting myself so far as being the prescriber of therapies for myself. Many of you have no qualms in doing so. I may take some flak for this but I find that the level of expertise of some here to be lower than I would accept for myself. Many therapies seem to be hyped due to hopes and prayers more than science. I am not saying that is the case for many of you but I can't help but notice it happening many times. Many of you tell me I should try this or that therapy because they know someone who had success. Success is often not well described or measured or even understood. And, know one really knows enough of my particular medical situation to warrant anyone to tell me that "if I only" were to go to XYZ clinic, I would surely find just what I need to slow the PCa down.
I'm baring my soul here. I'm sure someone will be offended as to my believes and think me a fool or idiot. I don't pretend to have the same level of knowledge and understanding that some on this forum have. I do have a chemistry degree with an emphasis on biochemistry and physiology so I can read articles and get a pretty good grasp on what they intend to say. I also find that even some of the PhD's and MD's/MO's don't really impress me often times. Many of the articles referenced here have been subjected to cherry picking of the objectives, specific methodologies, restrictions, and results.
I am prone to write too long. I am also terrible at double checking my grammar, content, and spelling. My apologies. I am somewhat emotional about all this. But I am doing my best in a difficult situation, as you all are. I hope that some of you, including myself, will find therapies that have dramatic successful outcomes. Good luck to all.
Sometimes individuals need to express themselves in regards to the system and what they have gone through on their journey. Read your profile and ordeal with lupron. Not a fan of the side effects myself. I doubt anyone is offended by your comments... I would like to help you on your path or try, so a few thoughts:
1) So how many multiples of 5 mets do you have, <50, and could you go to London, Ontario???
Patients treated with prior systemic therapy are eligible for this study, however, systemic therapy agents that are cytotoxic, immunotherapeutic, or molecularly targeted agents are NOT allowed within the period of time commencing 2 weeks prior to radiation. Patients on conventional hormone therapy with anti-estrogen therapy (including but not limited to tamoxifen, letrozole, anastrozole, Luteinizing Hormone-Releasing Hormone [LHRH] agonists or antagonists) or anti-testosterone therapy (including but not limited to LHRH agonists or antagonists, direct anti-androgens like bicalutamide, apalutamide or steroid synthesis inhibitors like abiraterone) may continue this medication. No systemic therapy may be planned to initiate within 6 weeks after completion of radiotherapy.
A study by Dr David A Palma, the lead on the SABR COMET trial. So it sounds like the drugs will not exclude you, BUT... they are not required...
2) I take it you have considered bicalutamide alone. Some here do intermittent therapy to delay the disease progress. It is well tolerated overall. The Dog of Terror aka cujoe is on this path, and I believe a few others.
You can do whatever you like with those thoughts... I am not offended, but just trying to help... Not a fan of the system myself in all things.
Hey Fish, Thanks for the suggestions and info. I just took a glance at the clinical trial you referenced. It is a phase 1 trial with the intention to find any bad reactions to the wide use of radiation on polymets, between 10 and 50.
The results of my PSMA PET/CT June of last year
Location, extent, and distribution pattern of prostate cancer metastases:Lymph node regions:Internal iliac: Yes. 0.8 cm right internal iliac lymph node (CT image 283) with moderate signal intensity in maximum SUV of 5.5 (PET image 253).External iliac: Yes. Left external iliac 0.5 cm lymph node (CT image 274) of mild-to-moderate signal intensity.Common iliac: Yes. Bilateral moderately intense common iliac lymph nodes the most radiotracer avid of which is located along the left side withmaximum SUV of 7.2 (PET image 219) measuring 0.6 cm in long axis.Obturator: No.Presacral: No.Other pelvic: mildly intense left mesorectal lymph node with maximum SUV of 2.7 (PET image 260).Retroperitoneal: Yes. Multiple moderately intense radiotracer avid retroperitoneal lymph nodes, the most radiotracer avid of which is in the leftperiaortic region measuring 0.8 cm long axis (CT image 221) with a maximum SUV of 12.1 (PET image 197).Supradiaphragmatic: Yes. Moderately intense 0.3 cm left supraclavicular lymph node with maximum SUV of 4.3 (PET image 78).Other extrapelvic: No.
The report doesn't give a number of lymph nodes in several of the areas with multiple node involvement. How the number is calculated for the trial is not defined in the trial so I guess it would depend on how that is interpreted. The mets identified were all over 5mm so they would all be included in the count.
There are mets in the lymph nodes in the peritoneal area. "Disease" in this area is exclusive. As are any in the rectal area. I am guessing that radiation which might damage these areas would be dangerous. Which is why I didn't op for radiation after my prostatectomy - right or wrong.
I'm not keen on being in a Phase 1 trial especially for wide radiation.
I won't travel to Ontario or London to get the multiple zaps in any case.
I didn't decide to use old-fashioned DES (Diethylstilbestrol) for ADT because of cost concerns, but a 30-day supply is dirt-cheap.
Many drugs are tested at high doses on the basis that the liver will destroy 90% in the "first pass". Such a burden on the liver. A relevant CYP-inhibitor could significantly reduce costs.
e.g.: grapefruit juice is a CYP3A4/5 inhibitor.
"Abiraterone acetate is hydrolyzed into active metabolite abiraterone via esterases. CYP3A4 and SULT2A1 further metabolizes abiraterone into two inactive metabolites called abiraterone sulfate and N-oxide abiraterone sulfate." [1]
One of my constraints is that a good chunk of my liver is non-functioning. The liver is pretty important as you note. The crimes of yesteryear are catching up to me.
The problem with using grapefruit juice and much lower dose of abiraterone is the number of factors involved such as liver functions when giving a CYP3A4 inhibitor with a CYP3A4 drug. I do not drink grapefruit juice for a reason and it started with statin drugs, which I am on highest dose Atorvastatin as well as Abiraterone.
The Prednisone dose could stay the same, but then again....who knows??
The studies done with lower dose abiraterone with a meal being equivalent has done patients and their savings a real benefit. Things like these studies need to continue.
P.S. I should have mentioned that one of the biases I have developed about India is the wide variation in quality control of meds for any type of medical condition. I have been taking a few meds for several years. My main pharmacy corporate office decided to change the producer of one of my most important meds from one manufacturer to a different one. Either a supply problem or cost. I suspect cost since I could find the med produced by the one manufacturer at a different pharmacy. One of the different source drugs was completely ineffective. The difference was dramatic. It just did not work. I reported that to pharmacy, then to the manufacturer and then to the FDA. The pharmacy and the manufacturer's rep both told me that this was very unlikely since the formulation would have been carefully followed at every manufacturer.
When I took organic chemistry many years ago, a central problem in the lab was how easy it was to make a very slight change in the way a compound was made, or a change in the precursors, or the final collection of the product. I think the one manufacturer had quality control problems, one of which could be in the way the quality of the product was analyzed and what percentage of it was the objective instead of other products. Some of these assays are more difficult than the manufacture depending on the chemical of course.
In any case, for whatever reason, the same med from one manufacturer was dramatically different than the same med from a different manufacturer. It has been well documented that some countries have this type of problem far more than others. India is one and China is another. I am sure there are others. What is common is that PCa patients go to a country with a cheaper source of a med. Why is it cheaper? The precursors are cheaper? The quality control is garbage? The expertise of the shop is not up to par? The equipment is substandard? Purification is not done correctly? Or just plain greed in cutting corners on everything?
For those who are absolutely non tolerant of LHRH ADT (as you are and I was) there is an alternative of using bicalutamide monotherapy (with or without adding dutasteride. I had this advised for me by Dr Celestia (Tia) Higano at SCCA early in my cancer journey. It worked well for me for nearly 5 years with very much less side effects than Lupron. And these are inexpensive generic drugs, so no significant financial toxicity from this approach. I don’t know that Dr Higano is still there at SCCA, but her name will garner respect with whom ever is your MO there. Worth discussing and considering it.
MateoBeach, thank you very much for your suggestion. I'm going to look in to this and I will bring it up with my MO - Dr. Michael Schweizer. Dr. Higano is no longer there. Note that SCCA is now officially Fred Hutchinson Cancer Center. SCCA still has a web page, etc. but they have rebranded it to Fred Hutch (as it is usually called).
Looking back over my notes, my MO and I ruled out bicalutamide because, while it is not an ADT like Lupron, it causes similar side effects, one of which is potentially serious depression. It seems that you must have avoided that but I am not willing to take a chance on it. The mechanism by which these meds affect emotional states is unknown. Not having T in your blood is ADT but, in essence, deactivating it may have the same effect as not having T at all. The T is not actively transported in to cells, rather it initiates a complex waterfall of biochemical actions.
My drug insurance is Medicare Part D. Various plan options cover different meds individually so mine is currently chosen to give me as much coverage as possible for the most expensive (in total) meds I take regularly. It certainly would help if bicalutamide is relatively inexpensive but that would not cause me as much FT as traveling to exotic places (like NYC haha) for therapy. But I am going to rediscuss it with my MO later this month.
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The old vegan vs other nutritional diet comparison persists
Thoughts on next steps
