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genemyers's Message Board Messages

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RE: Overwhelmed

by genemyers - April 24 at 1:58 AM

Sorry for what you are going through, but your father is fortunate to have you help him. 

Would need some more information on your father to provide advice.

The best options depends on your fathers psa history, gleason score if he has that, psa doubling time, the results of the bone scan (if done), your fathers age, if your father has other illnesses, what other prostate cancer treatments he has already had, if any, what specialty is the doctor wanting to do injections, etc.

Would need to know what is in the “injections” that the other doctor is recommending.

Usually advanced prostate cancer means mets. If your father had advanced prostate cancer with no mets, where was the cancer and how did they know where it was?

I cannot comment on putting a pin in the femur for high fracture risk, I would defer to your doctor for that decision. 

Gene

RE: stage 4 prostate cancer

by genemyers - April 18 at 2:11 AM

Sorry about what you are going through. 

Your doctors are right in that if his psa rapidly increaseing and/or he has a lot of pain the next step would be Taxotere becasue it can act more quickly than other options to bring the pain under control.  Then you can look at other treatments.

Another option to start talking to your doctor about is Xofigo which is approved for bone mets and is very well tolerated.

“How effective can they be?”. They are not effective.

Dexamethasone/prednisone is not a stand alone treatment for prostate cancer. It is given with Zytiga and with other treatments. Prednisone does have a mild cancer suppression effect (5%), but I would not consider it a primary treatment, and I have never heard of a doctor giving it as primary monotherapy.

Are you sure you understood what your doctor was saying? Maybe your doctor is not up on all of the current therapies in the USA? 

Ask your doctor if you can first add casodex and Avodart to the Lupron and see if that helps.

Ask your doctor if you can next try enzalutamide before chemotherapy.

Ask your doctor if you can next try Zytiga before chemotherapy.

You might consider researching other therapies to propose to your doctor before chemotherapy.

RE: stage 4 prostate cancer

by genemyers - April 15 at 3:41 AM

Why do you not try Zytiga first instead of Taxotere? Why not try adding Avodart to the mix? 

What is the age of your husband? Taxotere tends to get harder on the man on each cycle that you are on, (with fatigue, peripheral neuropathy, etc.) so a healthy male is the best subject to withstand the chemo.

How do you know that the Xtanti was not working? 

How was his cancer diagnosed? Was it with a bone scan or with a biopsy? If biopsy what were the results? Gleason score, etc?

I probably should have clarified some things more in my original post.  Sorry about that.

There are no radomized controlled trials in your situation showing that metformin or statins have any effect on overall survival.  There are just some preliminary studies that suggest that they may help.  Suggestion is not proof.  Without proof a lot of doctors will not offer the drug, even if it has minimal or reversable side effects with the potential for benefit.  It is not that the drug may not work, it it that there have been no studies to prove that it does work.  So many doctors will err on the side of caution (do no harm).

The prostvac and ipilimumab was a small phase one trial that results were recently presented, but I do not know if there is a trial going on for this currently.  I would assume, based on the good results, in the near future there would be a phase 2 trial.  Also other trials were done with ipilimumab, but it had some significant side effects.  We do not know, but in this current trial  they may have lowered the dose or found a way to deal with the side effects.

The Prostvac alone trial has been going on for awhile now, and I do not know if they are still accruing patients.  Also immune therapy works better when the tumor burden is low, so doctors may not consider it for patients with large tumor burdens.

Leukine is a imune therapy drug that has shown some results in case studies.  Once again no large trials.  Also Thalidomide is a drug from the 50's that women took and then their babies had birth defects.  Do not take this if you plan on becomming pregnent.  A more updated version of the drug, Revlimid, was tested for prostate cancer and was not shown to be of benefit. 

So overall there are many many reasons for doctors not to offer any of these off label drugs or to push the envelope on unproven therapies, and just offer standard vanilla therapy (Taxotere, Jevtana, Xofigo).  Its really up to the patient to discuss these options with the doctor and to jointly come up with treatment that they can both agree upon.

Gene

RE: Xofigo

by genemyers - March 12 at 2:57 AM

So sorry to hear about your loss.  It sounds like you had a very bad situation to deal with.  And your husband was very young.

I do not know much about this except that the FDA has an adverse reporting system for bad side effects from drugs.  Here is a link to their site with phone numbers to call.  The actual report looks kind of complicated, but you should be able to call the FDA and they can give you information on filing the report.

http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInforma

Best wishes

Gene

Can you please provide some more information to help answer your questions?

Where are you coming from?  What state(s) are you going to, or will you go anywhere in the US?  How long are you staying?

Please clarify if you have been diagnosed with prostate cancer, or you are coming to the US to both get a biopsy, get a diagnosis, and then get the treatment all in one trip?

You said a "prostatectomy, partially related to a large prostate".  Normally if there is not cancer, doctros will not do surgury but will give drugs to shrink the prostate if a large prostate is causing medical issues.

Do you have a gleason score yet?  Have you already had one biopsy and if so, what was the results?

Why do you not want to get treatment where you are at?  It would be easier than traveling.

Where are you getting the multiparametric MRI guided biopsy or are you trying to figure that out too?

There is some precedence that you can go back and try Zytiga again, but it is usually not as effective the second time around and I am sure your doctor will have a very strong opinion on this idea. 

There are some indications that Firmagon is more effective than Lupron for advance patients. Could be worth a try.

Metformin has some anti-cancer properties and some dr’s are prescribing this as an adjunct treatment. Same idea with adding a statin drug. 

Xofigo may be your next best option if you have bone mets and no soft tissue mets.

I assume you are on Denusomab. 

Trials: recent trial that has everybody talking is Prostvac + ipilimumab. Some dramatic results for a sub set of the patients. These are immune agents. 

Prostvac also has its own separate trial going on. Side effects of Prostvac appear to be minimal. 

They can do spot radiation to certain bones to give relief for bone pain. This is palliative only.

Other out of the box therapies you might want to talk to your doctor about is Leukine, an immue agent; or Thalidomid an agent that stops blood vessels from forming to feed the cancer cells.

Hope this gives you some ideas to talk to your doctor about.

Gene

 

RE: Prostate

by genemyers - March 09 at 4:56 AM

Dave:

A little more information would be helpful to know if you should see a medical oncologist:

Did you have a biopsy? If so what where the results? Gleason score, no of cores positive, % of each core positive.

What is you psa and the history of psa readings or the psa doubling time?

Have you had any treatments to date? If so what where they are what was the result?

Was the MRI a standard MRI or a multiparametric MRI? 

Have you had any other imaging studies and what were the results?

Has your doctor recommended any treatment? If so, what?

Gene

 

RE: Mayo Clinic C11 Choline Scan

by genemyers - March 07 at 2:11 AM

The standard Pet scan is a FDG pet scan which is not very useful for prostate cancer.

So what they are doing at the Mayo clinic is using the c-11 choline Pet scan to find out exactly where the cancer is in the body. At this institution if they find only a couple of spots where the cancer is, they will sometimes recommend surgery or spot radiation to the area where the Pet scan shows there is cancer, with the hope of eliminating it. Mayo has individual case studies of patients (see link to video below) with low level metastatic disease (a few spots on the pet scan) going into remission after radiation or surgery to the specific site. This is a paradigm shift in the treatment of these early metastatic patients which are almost always now given systemic hormonal therapy first, because the philosophy was: “the cancer is now out of the bag and is everywhere so we have to now treat the whole body”. Patients are going to the Mayo clinic to have the scan and follow up treatment.

This is a somewhat new concept which is being studied. I do not know if there are other centers that have the c-11 choline Pet scan. Also most doctors will either not know about this or will not recommend it because it is so new, experimental, and unproven (there are no large trials). 

If it can be further studied and accepted by the broader medical community, it provides the hope of a durable complete remission for early (and even late) metastatic disease.

The Pet scan is also useful for patients that have had radiation or surgery that has failed with a rising psa.

https://www.youtube.com/watch?v=NkqizmvqJPo

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About genemyers

Patient
Prostate Cancer
Alternative Treatments, Chemotherapy, Diagnostic Imaging, Diet, Hormone Therapy, Radiation, Side Effects, Supplements, Surgery

RP for prostate cancer; Currently monitoring Ca status with psa tests, have undertaken diet changes and supplements to keep Ca in check. Interested in current diet and supplements that suppress cancer.

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