This forum is for the discussion of anything to do with Prostate Cancer. There are only four rules:
No fundraisers, no commercials (although it is OK to recommend choices of treatment or medical people based on your personal research; invitations to participate in third-party surveys are also acceptable, provided there is no compensation to YANA);
No harvesting e-mail addresses for Spam;
No insults or flaming - be polite and respectful at all times and understand that there may be a variety of points of view, all of which may have some validity;
Opinions are OK, but please provide as much factual evidence as possible for any assertions that you are making
Failure to abide by these simple rules will result in the immediate and permanent suspension of your posting privileges.
Since this is an International Forum, please specify your location in your post.
So sorry to read your post, Linda. As I am sure you will appreciate your husband’s diagnosis is not a good one and although there have been significant advances over the past ten years or so, it is still very difficult to manage advanced disease. Without knowing anything more about your husband’s diagnosis it is difficult for anyone to give you specific advice, but here are some pointers that may help:
1. You don’t say what country you are from. I mention that because treatment available (and cost of treatment) varies considerably from country to country, so what therapies are available for your husband may differ significantly. If you are going to post on other Forums or seek help from other men, you should mention where you are from and also give more detail of the diagnosis. One of the simplest ways to do this is to put your story up on the website JOIN US because that means that you don’t have to repeat your story, but merely refer to the link you will get. You are likely to get responses from the site as well.
2. Depending on which country you live in you should try to seek out an oncologist with experience in prostate cancer. Your urologist may be a good surgeon, but inevitably he will not be a cancer specialist – and that is what you need now. It may be difficult to find such a person and it may be worth enquiring from the two men listed in the Resources page at INFORMATION SITES. Just page down to the section labelled HOW TO PICK A GOOD SURGEON and you will see the links to John Chandler and Chuck Maack. Chuck has a deal of experience in advanced cancer and may well be able to help you if you are in the US.
3. If you do not understand what ADT (Androgen Deprivation Therapy) – the technical term for the therapy which your husband is undergoing you might like to go along to CHOICES and use the links there, including another to Chuck Maack and his site.
4. The use of PSA in tracking effectiveness in advanced cancer is being somewhat challenged and I put a short piece on this in my latest E-Letter #14 . Regrettably, the lowering of the PSA, whilst generally speaking is regarded as good news, it might be hiding some other problems with the most aggressive cells that generate less PSA.
5. As to how long the Lupron effect will continue – as R Scott said in his post, it is immensely variable. BUT….there are other options that may be helpful
This may not be what you wanted to hear, but I hope it has helped to point you in some directions that you may find useful.
You should have been given a drug like casodex prior to Lupron (LHRH) type drugs, especially with your known parameters. So called induced 'flare' from the start up of Lupron could increase bone pains, you can search for such info and read up on this area.
PCa is very complex stuff, exceptions, anomolies and results vary, there are also versions of aggressiveness of cells, some very aggressive PCa's don't give off much psa to measure (other tests can reveal biology that is happening in your body). There are even variant types of PCa, sometimes not categorized or made known, especially by average pathologists (just showing it gets complex).
Although Lupron and other drugs can regress the PCa and evidence is shown on scanned mets patients, before and after...like in Dr. Strums book. How well it does so, probably varies just like patients results. There are drugs to assist with bone issues, you might ask about adding estrogen patches to cancell alot of side effects such as hot flashes and it assists bone density of which LHRH robs your bone density. You should be familar with drugs used on PCa, see www.hrpca.org for many drugs that can be tried. Nothing is overly simplistic in this, docs do not all agree on protocols and quality of life is also something to consider while fighting this dragon.
I was reading on this site, and my husband is in a very similar situation. He is stage IV, on Lupron, and his psa is way down, but his pain level is still very high. The doctor said it could be arthritis, which I find really hard to believe. I'm just curious how Linda's husband is, and if the pain was indeed from arthritis.
