One patient with glioblastoma still alive nine years later
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by genemyers - March 12 at 3:25 AM
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.
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.
by genemyers - March 12 at 2:48 AM
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?
by genemyers - March 11 at 3:19 AM
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.
by genemyers - March 09 at 4:56 AM
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?
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.
by genemyers - March 07 at 12:50 AM
The patient and the doctor both decide at what point to resume hormonal therapy, so that the psa is suppressed again down to an undetectable level. So generally a rise over 1-2 months from 3.5 to 17.5 would trigger the doctor to start treatment again as that is a very fast psa doubling time. But it is really just the doctors experience talking when making the recommendation at what point to start.
Once Lupron is given the first thing that happens is cancer cells stop growing and then they start dying off. Doctors differ on this but generally it is better to have less cancer than more cancer, and Lupron or any treatment is more effective when the tumor burden is lower (psa is lower).
You doctor does not want to sit there and watch the psa go up to where it will be harder for the Lupron to control it.
Long ago many oncologists used to “save” Lupron until you needed it later (psa of 250-500 and/or bone pain). This is not commonly practiced anymore.
The side effects are a drag, but the number and severity varies from man to man. You should demand from your doctor that they give you information or treat all of the side effects your husband is experiencing.
by genemyers - March 06 at 5:04 AM
So sorry to hear about your ordeal. You have been through a lot.
Your situation is very concerning to me and you are in a tough spot with your doctor; but in my opinion it is time to be aggressive with your doctor and request an explanation, and demand a treatment plan for the side effect or some other solution. This sounds like a serious condition, and during the trials on Xofigo, some people dropped out of the trial due to low blood counts.
Below is some information on the side effects of Xofigo and what happened in the trial that approved the drug.
If it is anemia related there are drugs that can be given to counteract this (Procrit or Aranesp), but you really need your doctor to tell you want to do.
During and After Treatment With Xofigo
Make sure you keep your blood cell count monitoring appointments and tell your healthcare provider about any symptoms or signs of low blood cell counts. Report symptoms or signs of shortness of breath, tiredness, bleeding (such as bruising), or infection (such as fever).
The most common hematologic laboratory abnormalities in Xofigo-treated patients were anemia, lymphocytopenia, leukopenia, thrombocytopenia, and neutropenia (Table 4). The most common hematologic laboratory abnormalities leading to discontinuation for Xofigo were anemia (2%) and thrombocytopenia (2%).
You might also find this paper on Xofigo written by a patient useful:
by genemyers - March 05 at 4:22 AM
I would agree somewhat with both of the comments above. If you do not feel comfortable with the surgery, postpone it. But you should make a decision quickly. If you want to do diet, exercise, supplements that is your choice, then quickly decide to do that. If you want to do surgery or definitive treatment that is your choice too.
All I can tell you is what doctors would say. With a gleason 8, 5/7 cores positive and 70% cancer in those cores, the doctors are going to want to give you some type of definitive treatment (surgery, radiation, cyro, HIFU, etc.) right away because they are concerned that if you wait too long a gleason 8 cancer may get out of the prostate and then be harder to treat and incurable.
No doctor in the US is going to recommend a gleason 8 patient be watched with active surveillance. They consider a gleason 8 cancer aggressive and want to treat it as soon as possible.
Consider going to the memorial sloan kettering web site and put your numbers in the nonogram and see what the probability of successful surgery is with your indication. Based on the calculator, your chances of having a rising psa at 5 years with surgery is about 50%. Also your change of extra capsular extension is 60%.
Agree that bone scans and conventional MRI are not sensitive enough to detect metastasis and radiation might be more effective in your case so you may want to consider a radiation oncologist second opinion.
I would also ask the doctor what your chance is of a cure with surgery. I would also ask for them to detail for you all of the side effects that can come with surgery. I would ask if they do not cure you with the surgery, then what are your other options at that time.
Being an informed patient is your best defense and will allow you to make the best decision for you.
by genemyers - February 25 at 3:51 AM
There is really no way to lower the Gleason score; you can send the slides to another pathologist and they might come back with a different opinion on the same cells, but the Gleason score is a kind of number you get and it does not change (wouldn't it be wonderful if we could take a Gleason 9 cancer and change it into a Gleason 6? maybe someday).
Your focus should be on getting the psa as low as possible as fast as possible.
At this point your father should consider a consultation with a Medical Oncologist, (if not outright moving to an oncologist). Urologist are trained surgeons. Medical Oncologists are a subgroup of internal medicine specializing in giving cancer drugs.
So different countries have different philosophies and different norms and how to treat this disease, and your doctor may not like some of the drugs on my list.
If it was me, I would want the doctor to give me a treatment plan for your father. Example: “First we are going to give these 3 drugs and if those do not work we will give these 2 and then later we may try this or that.” Doctors do not like to do this, but it is comforting to the patient and family that there is an actual care and treatment plan that the doctor is planning to follow.
Consider taking the list of possible drugs to your father’s next appointment and going through them one by one and see if they are available and see if the doctor believes they are indicated for your father, either now or in the future.
Your father has agressive cancer, and it appears that he has failed Zytiga in about 4 months, so it is time to throw all of the best ideas/medicines at this disease right now to try to bring it into remission. Try not to go more than a month between psa tests.
Hope this helps.
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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