I am 76 years old, live in Cleveland, and was diagnosed in Mar, 2017 with metastatic PC. Scans showed mets on two ribs, my left ilium, and also spots in my right groin lymph node.
History is this: Had regular, annual (December), PSA tests since age 55, always stayed in 1.3-1.5 range. 2013: 1.45 2014: 2.96 2015: not tested 2016: 19.4
I was not particularly sensitive to PC issues, until 2016, because results were always between 1.0 and 4.0 which doctor said was OK. In 2016, doc chose not to test PSA because Medicare suggested tests were superfluous for most of us "older folk" and I didn't challenge it.
Another PSA in Jan, 2017 showed 24.9. Immediate biopsy showed cancer in 7 of 12 sections with worst two having Gleason of 9 (4+5) and the others from 5 to 8.
Mar, 2017 - CT and bone scans. March - ADT with one-month Firmagon injection. April - Eligard injection with six-month potency. Also started monthly XGeva injections. No other medication.
Results, with quarterly PSA tests: PSA dropped to 0.85-0.90 range where it is now. Side effects minimal with only many hot flashes early but very minimum now. Fatigue and some leg weakness is now starting to materialize. Uro is very conventional, tending to follow only FDA-prescribed regimen. No medical oncologist involved until Dec. 2017. I solicited and met with an MO then but have had no plan development or change in routine yet. Not sure if he is a prostate specialist. Second CT and bone scan scheduled for mid-March and third six-month Eligard injection scheduled for April.
I have read many, many posts, and followed the threads on some, here and see that a lot of help, and suggestions, are provided. It is also very obvious that individuality is a major ingredient in any medical recipe. But, I would like to use the wide knowledge-base of this group to try to eliminate poor alternatives while developing a working plan for myself. Also, I would to get a rough idea of what kind of costs are part of the equation of the various alternatives and what regimens are generally covered, at least partially, by Medicare or private insurance. We are insured by Aetna, at the moment.
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kooss
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If I understood correctly your medical history, you seem to have hormone sensitive metastatic prostate cancer.
The usual treatment at the present time should be castration (low testosterone) using Lupron or similar drugs and abiraterone , recently approved to treat cancers like yours.
Abiraterone (zytiga) stops the production of the testosterone by the adrenals which is not blockaded by the Lupron or similar drug. The use of abiraterone has shown a survival advantage when compared with the regular ADT, that is the reason that was approved and the reason you should be treated with this drug.
If your cancer were 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
I was treated with LU 177 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. It has very few side effects, in general is well tolerated.
If you cancer is PSMA positive and you wanted to be treated with Lu 177 you will probably have to go abroad since the clinical trials in USA are for castration resistant cancers. Germany, Austria, Netherlands, Australia etc may be places which could accept patients with hormone sensitive cancers.
Along the way there are 2 new drugs that could be use for your treatment (besides chemo), apalutamide and enzalutamide.
There are many avenues of treatment so keep fighting.
Anything please let me know.
best wishes
Raul
• in reply to
In addition you could look at immunotherapy .
There are many clinical trials for prostate cancer with vaccines and with drugs particularly PDL-1 inhibitors.
If interested do a search for prostate cancer and vaccines at clinicaltrials.gov
and for prostate cancer and immunotherapy at the same place.
I was treated with a vaccine in 2007 which stopped the cancer for 6 years. The vaccine is called prostvac and it functions only in hormone sensitive cancer. There are ongoing clinical trials with this vaccine. If interested search for prostate cancer and prostvac at clinicaltrials.gov.
Some of these trials you can qualify being in ADT, not all of them but some. Being in ADT is not a contraindications to do treatment with lutetium 177 which kills sensitive and resistant cells anywhere in the body.
Thank you for your help and quick response. I have read your responses to several others, too. Your willingness to spend so much time and effort on other peoples' miseries while dealing with your own is extremely generous and, from my perspective, very welcome. For all of us, thanks.
I have not had any special scans other then the standard hospital bone scan. No one has said to me anything unique about being PSMA positive. However, I do have mets in three bones and in the lymph nodes in the right groin area. In reading the various responses to my plight, I am amazed at how many treatment options all of you have discovered and, in deed, how many different options a few of you used yourselves.
Do insurance companies (or Medicare, for that matter) accept so many different treatments for one individual? Are many of these options not paid for by any insurance?
Sorry to hear about your diagnosis, many of us here are in the same boat. Welcome to the group and glad you found us.
I was diagnosed around the same time as you were and offered early chemotherapy in accordance with the results of 2 recent trials (CHAARTED and STAMAPEDE) which have been out for a while now.
If you want to take a more agressive approach, it might still be possible for you to add either chemotherapy or Zytiga as an additional agent to get an additional benefit. Zytiga was also shown to add a significant survival benefit when done early (see STAMPEDE Zytiga arm and also LATITUDE trial). The Taxotere chemotherapy and Zytiga both added around 13 months median to OS. The chemotherapy is a bit harder as far as side effects go, but it's over in 18 weeks. Zytiga in general has less toxicity and easier side effects, but the period you take is much longer. Between the two, the chemo is less expensive. I prefer the chemotherapy because it goes after cancer that is not hormone sensitive, whereas Zytiga is another ADT agent so all the focus is just the hormone sensitive cancer.
I would recommend discussing this with your doctor since I'm not one. Most of us here would recommend that doctor be a medical oncologist specializing in prostate cancer.
Keep us posted on how you are doing.
Good questions. I think you are in a good place, mentally. The standard treatment for metastatic prostate cancer leads to the grave, where it seems many if not most doctors are content to leave it. Good for you in questioning this strategy. Look on YouTube for some PCRI videos, to get a sense of what the forward thinking doctors are doing, or even buy some audios from Audio Digest on selected topics in Urology and Oncology. You should get up to speed very quickly this way. Being here is also a handy move. The people here are not medical writers, of course, so you may need some time to adjust yourself to that.
The main threads of treatment are Hormonal (interfering with Testosterone); Chemo (attacking dividing cells); Immune (getting the immune system to recognize cancer cells as compromised); Targeted (usually a two stage drug: a ligand <homing device> joined with a warhead<nuclear>, Energy[radiation<internal and external>, heat, cold, electric, kinetic<alpha particles>.
Also combinations or variations: Radium 223 is a self guided warhead, since radium happens to look like calcium, and is deposited in the bones where it kills the surrounding bone-like metastases by emitting alpha particles which break the DNA of the nearby cells.
Along with this are the various types of imaging. Standard of care is T99 bone scans for bones, and CT for soft tissue (i think that is the split). The DEXA bone scan is to check for osteoporosis, a side effect of ADT. There are other newer ways to image, undergoing trials.
One you arrive at your opinion on the imaging and on the treatment that you personally feel the most comfortable with, you have a place to stand to evaluate what others are saying.
I quite like engaging apotosis, the built in killing mechanism, since it is time tested by evolution to be well tolerated by the rest of the body. It is the officially approved way to kill cells. Easier said than done, and not exactly realistic at this time.
It does not hurt to look at clinical trials.
Exercise, of course. Get your waist line under control. Try not to die of a heart attack in the meantime. And people have suggestions for off-label things that you can try. These have generally not been trialed. In this category, I favor high-dose Vitamin D3, because of Bruce Hollis. Easy to get invested in this. Supplements. My advice here is cool it, but you may be convinced by others.
With Aetna advanatge plan all your costs will be covered with a maximum out of pocket of around $4500....for your treatment plan 2 words...Cleveland Clinic...when you call to make an appt. tell nurse you want a MO that specializes in PCa
I was on Eligard and it quit working. Went on Firmagon which requires injection every month. Oncologist asked if I wanted to try going back to Eligard so I didn't have to have monthly injections so I did. Also taking Xgeva and Xtandi for over a year....PSA has been 0.04 for over 9 months. And I have had no side effects that I have been able to tell other than some fatigue.
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