Loading...

genemyers's Message Board Messages

Loading...
Showing 1 - 10 of 81

Page 1 of 9

RE: Prostate Cancer Treatment

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.

Gene

 

 

RE: Prostate Cancer Treatment

by genemyers - February 23 at 4:19 AM

I have added some of my comments within your commentary below:

On Feb 22, 2015 8:25 PM katyayni wrote:

Hi there,

My father was diagnosed with it in april 2013. He went under laproscopy and after the surgery he was given the first shot of ELLIGARD(PSA = 0.11). Second shot of elligard was given in october 2013. Reports were good but doctor said that we may go for medication. 

Then he again consulted the doctor in feb 2014(PSA = 0.22). Since then he is taking a monthly infusion of ZYRONA. The third elligard was given in may 2014(PSA = 1.20).

In the US he would be said to be on Lupron and Estradiol / DES.

We again consulted the doctor in august 2014 and asked us to discontinue calutide and start honovan(at that time his PSA was 6.24) .My father started complaining of pain. Doctor advised to give him nucoxia or mobizox.

So it appears he was also on Casodex (calutide) with the above.

Because of honovan my father started complaining of pain in back,inner joints. His PSA rose up to 6.89. In sept., our doctor switched honovan with estran. Still there was no betterment instead PSA rose up to 25 and CEA 1300.

Then in October he switched the medicine to Zybirra + wysolone + zelgor . In 10 days his PSA came down to 15. He started feeling better.

This is a good change, so he is getting zelgor (Zytiga) which is what brought his psa down.

Then after that in december his PSA came down to  4.96 and in january it again rose up to 10.69 (CEA was 769). On 8th feb it was 12.63 and on 19th feb PSA was 17.18 and CEA was 880.

What did the doctor say or do when the psa went from 4.96 to 10.69 to 12.63 to 17.18? Did he change his drugs or what were his plans. It is never good to just sit back and watch the psa rise.

The doctor's name is Dr. Ajay Sharma(Robotic and Laparoscopic Urologist, Senior Consultant Urologist,New Delhi). I'm from India and the treatment is going in New Delhi itself. The medication and treatment over here is quite advanced and the doctor has a reputation and is very renound for these cases.

Please share your views, it really helps.

Thank you

Katyayni 

Regards

Also his gleason score is 9.

 

 

Katyayni:

So sorry to hear about your father and what he is going through. He is lucky to have you to help him. It looks like your father is getting good treatment. Gleason 9 is hard to treat, and is a serious disease.

I do not know what drugs are approved for use in India. In the United States recently there have been several new drugs approved that are quite effective. So you would need to talk to your doctor about whether he can get them in India.

Some US doctors would keep your father on the elligard but switch him to a newer form of the drug called Degaralex (Firmagon) which is an LHRH antagonist.

The next drug to try (in combination with Firmagon is Xtandi (enzalutamide). This is newer drug in the US but in the same class as calutide.

After there is bone metastasis, another treatment to try in the US is Radium-223 or Xofigo. This is targeted to the bone to stop bone metastasis. But at this time we do not know if your father has bone metastasis. Has he had any scans or imaging to determine where the cancer is? (Prostate bed, lymph nodes, bones?)

Prostate cancer prefers to move to the bone and that is where it can do a lot of damage so in the US the doctor would probably put your father on denosumab or zoledronic acid to improve bone integrity and prevent skeletal related events. Denosumab is thought to be more effective. 

In the US, after these are tried, there is chemotherapy, first with Taxotere (docetaxel) and then with cabazitaxel (Jevtana).

Other earlier options may include (ketoconazole+steroid or sipuleucel-T (Provenge)), but these may not be strong enough for what your father needs right now.

Try to get the psa test done every month.

Here is a link to the ASCO US guidelines and a two page listing and discussion of these drugs:

http://www.cancer.net/research-and-advocacy/asco-care-and-tr

Your goal should be to get the psa as low as possible, and to keep it at a stable and low level.  Anytime you see the psa rising on subsequent tests, that is your indication that it is time to switch or try a new drug.

Hope this helps

Gene

 

My conversion of India drugs to US is listed below:

ELLIGARD = Lupron in the US

ZYRONA = a form of estradiol or estrogen

calutide = Casodex in the US

honovan = synthetic estrogen

nucoxia = cox-2 inhibitor for pain but also has anti-cancer properties

mobizox = muscle relaxant/pain med

estran = Estradiol

Zybirra = unknown

Wysolone = Prednisone

Zelgor = Zytiga

 

 

 

RE: Wrestling with Treatment Options

by genemyers - February 23 at 2:29 AM

I have prostate cancer and before treatment had a psa of 4.3 and a Gleason score of 7.  I had 2 cores that were positive for cancer.  At diagnosis I was a young 45 years old.  I saw 5 doctors over a 2 month period including different urologists and radiation oncologists.  A radiation oncologist told me that I should have surgery, so that is what I did.

I did not like the situation because the doctors that I saw seemed to punt and throw the ball back to me and say:  you, patient decide on your treatment.  But I have no medical training, so how am I supposed to decide on what to do? 

Complicating this is that the treatment specialists tend to over promote their specialty (urologists want to do surgery, radiation oncologists want to do radiation, and medical oncologists want to give you drugs).  They do not usually give unbiased opinions and I have found out that this system can keep the patient from making the best decision that is right for the patient.

All of the treatments have side effects and the doctors tend to minimize them, so your best defense is to be an informed patient and reach out and educate yourself on the disease (like you are already doing).

Two sources that I find particularly helpful, and you may want to check out are:

http://www.ustoo.org/

http://prostate-cancer.org/

You may also want to consider going to a prostate cancer support group and hear other men’s stories.

Please take whatever time you need to make a decision, there is no hurry, and you need to feel comfortable with whatever decision you end up with because you cannot go back and undo it after the fact.

Best wishes,

Gene

 

RE: Wrestling with Treatment Options

by genemyers - February 22 at 5:04 AM

Most doctors would probably give radiation a slight edge over surgery for the reason that with a gleason 8 and 9/12 cores positive, there is likelihood that there is some cancer outside of the prostate and with radiation, you can expand the field of radiation outside the prostate to try to catch all of the cancer, whereas with surgery you only can get at what the surgeon cuts (the prostate itself) and there may be some cancer left behind.

Radiation is very effective in skilled hands for gleason 7-10 cancers.

Another option to discuss with your doctor would be seed implants (a form of radiation) along with IMRT (external radiation). With a gleason 8 another option would be to add Lupron for 1-2 years to try to clean up any stray cancer cells that the radiation does not catch.

Radiation has side effects; primarily the possibility of impotence, incontinence, and rectal problems. Surgery has about the same side effects without the rectal problems. If you get surgery after radiation, any side effects are additive from what you got from the first treatment, so a second treatment is something to try to avoid, if possible. 

Most doctors will not do surgery after radiation because the tissue is fried and it is a very hard procedure to do, so practically that is not an option.

Another option is to try to get imaging to try to see if the cancer is outside the prostate. This would involve a Multiparametric MRI or a Choline/Acetate CT/PET fusion. These are offered at limited places but you get a better idea if the cancer is outside the prostate. If they find it outside the prostate, they can sometimes target treatment to the site to attempt to get a cure.

I would definitely get a second and/or third opinion as there is no consensus as to how to treat this type of cancer and by talking to several doctors you can get a sense of which ones you respect and agree with their rational for treatment. 

Gene

RE: Prostate Cancer Treatment

by genemyers - February 22 at 4:35 AM

Can you provide a little more information on the medical history of your father?

What drugs is he taking? What medicines did the doctor change from and to?

What treatment or drugs has he taken in the past?

What imaging or scans has your father had? What were the results?

Did he have a biopsy, and if so, what are the results?

If known, what is the Gleason score?

What type of doctor is he seeing?

What county do you live in?

Without knowing all of the history, it would seem a little early to jump to chemotherapy. Prostate cancer is unlike other cancers, in that chemotherapy is not used early in the disease and there are new drugs on the market that work better with less side effects.

There are many alternatives, but you need to know what all of the prostate cancer medicines he has been on so far to narrow the options somewhat.

If the psa rises on each successive psa test, while your father is taking a medicine, that indicates that the medicine in no longer working and he needs to switch to something that will work.

As a side note I am very puzzled about the CEA readings. CEA is a common cancer marker that is used in a lot of other cancers, but usually not prostate cancer. CEA is used in the neuroendocrine variant of prostate cancer, but this is a very rare disease, so I doubt that it applies here. It would be interested to hear what your fathers Gleason score is and why your doctor thinks it is necessary to follow the CEA test.

Hope this helps.

Gene

RE: 49 and Frightened

by genemyers - February 19 at 4:30 AM

If you have the ability it would be very good for you to go to UCSF to get the scans, or an expert opinion.  Peter Carrol and Eric Small are there and they are some of the leading prostate cancer experts.  Mulitparametric MRI is done there by John Kurhanewicz MD and Anthony Westphalen MD. 

If you get refered to an urologist, just keep in the back of your mind that urologists are surgeons and they tend to have a bias for their specialty: surgery.

RE: 49 and Frightened

by genemyers - February 18 at 4:11 AM

The first psa testing started around 1986, so it is unclear if your father was diagnosed from a psa test or symptoms. Back in the early 90’s men went to the doctor complaining of back pain and it was found that they had metastatic prostate cancer to the bone, before psa tests were widely available. For you at this time, that is a far different story than what you seem to be dealing with.

I assume your doctor is an urologist. Normally they will do the free psa at the same time the psa is done. I would not ask for a biopsy now but take a couple of months to learn about your situation and get a couple more psa tests. The one psa test of 2.28 could be a fluke and the urologist will probably want to repeat it. I would get a couple more in 2-3 months intervals. 

Prostate cancer tends to run in families, but just because your father had that outcome does not mean that you will too, especially now that you know that it is something for you to watch out for.

Consider the following:

Get repeat psa tests every 2-3 months to get some more information on what the trend it. This is called the psa doubling time. Go to Memorial Sloan Kettering web site and put in your psa values and calculate the doubling time. http://www.mskcc.org/nomograms/prostate/psa-doubling-time.&n I assume the period between your last two psa readings of 1.78 and 2.28 was 12 months, the calculated psa doubling time would be almost 3 years. If the doubling time is under 3 months, that would be a concern for aggressive disease, but a psa doubling time of over 15 months indicates a kind of slow growing non-aggressive cancer. 

BUT we do not know if it is cancer. Your psa may be elevated because prostatitis or BPH which are non-cancerous conditions. Often the urologist will put you on antibiotics and order another psa test to see if the antibiotics brings the psa down or if the psa keeps rising.

If you ever do get a biopsy, getting the Gleason score is a somewhat good predictor of how aggressive the cancer is, if you have cancer.

Get your psa a couple more times, over 4-6 months, and if there is a trend on it rising, consider getting a Multiparametric MRI and a targeted biopsy. Another option would be getting a color Doppler ultrasound and a targeted biopsy. Regular grey scale biopsies are usually 12 pokes and are blind and are a sampling technique. MRI and color Doppler provide images that indicate suspicious areas and the biopsy is targeted to those areas, usually 3-4 cores. This good thing about MP MRI is that it is very good at seeing the very aggressive Gleason 8-10 cancers and if they are not there, it gives you a very high assurance that nothing aggressive is there, where the random biopsy does not do this. The downside of these two tests are that they are not offered everywhere and you may have to travel to get them.

Since you have the disease in your family, I would take the next several months to learn about the disease, so you can be an informed patient. You will get the best outcome if you do this. Read about diet, exercise, stress, and supplements as a way to arrest the growth of any prostate cancer that may be there.

Do not be concerned. We do not know if you have cancer at this time. If later on you do have it, it will likely be a Gleason score that is easily and effectively treated, and I really doubt that you are going to repeat your father’s experience.

Best wishes

Gene

 

RE: Psa tests and medication

by genemyers - February 17 at 5:15 AM

I have not seen or heard of drugs that can raise the psa (except for maybe testosterone). 

Drugs that can lower the psa are Avodart, Proscar, the LHRH agonists (Lupron) and antagonists, and other drugs commonly given to suppress prostate cancer.

Not clear from your post but it sounds like your husband has had 2 biopsies and they are recommending a third because your husband’s psa keeps going up but the first two biopsies did not find anything.  If this is a correct guess on my part, you may want to research and consider getting a multiparametric MRI with or without targeted biopsies.  This scan will indicate any suspicious areas which the doctors can direct the biopsy to the suspicious area.  If the scan comes back negative, you can relax somewhat. 

Other things that can effect a psa reading are: Benign prostatic hyperplasia (BPH; enlargement of the prostate gland, but it’s not prostate cancer) , inflammation or infection of the prostate (prostatitis) , a medical procedure to that area, sex right before the test, riding a bike right before the test, and the normal variability of the test between tests given at different times, or between different labs.

RE: New PSA Results--Need Some Info.

by genemyers - February 17 at 4:50 AM

So sorry to hear about all of the conditions both of you are dealing with. It is a lot.

Your urologist has probably already ruled out surgery because of your husband’s other medical problems. Surgery is quite an insult on the body and it takes a healthy person to bounce back from it.

Unfortunately the “stick the head in the sand” attitude is very common with a lot of men, not just about prostate cancer but on other medical issues. I am sure that you will support him in what every way you can.

The thing to watch now are the subsequent psa tests results. Get them as often as you feel comfortable. There are no medical guidelines on the timing, it is just your doctor’s opinion as to how often to get them. If you ask the urologist I am sure he would order one sooner for you. Any doctor can order it including your primary care physician. The fact that the urologist wanted to wait 6 months indicates that he is probably not worried about it, which is a good sign.

Best wishes. Gene

RE: New PSA Results--Need Some Info.

by genemyers - February 16 at 3:56 AM

Prostate cancer is unlike most other cancers in that it is usually very slow growing and a lot of men just watch it (called active surveillance).

Your husband might not have cancer but just BPH, which can cause an elevated psa. Did your husband have a psa test prior to the 7.06? If so, what was it and how long ago was it? This might tell you something if the psa is rising or just kind of stable. A psa of 6.84 and 7.06 is basically just the same number due to the normal variability of the test. I would not read anything into this change.

The Free PSA of 13% is a hint that there may be some cancer.  Not sure what the drop from 19% to 13% means.

Like a lot of 75 year olds, your husband may have a small amount of slow growing cancer. Do not be to concerned at this point. Keep getting psa testing as your doctor orders and watch the psa doubling time. If the psa is stable or very slowly rising (doubling time over 24 months) then your husband will likely not every have to do anything.

You can read posts on this site about good diet, exercise and lifestyle changes your husband can make right now to suppress any cancer that might be there.

If you are worried, you may want to ask your doctor to repeat the psa every 3 months for a while until you can see a pattern in the psa results.

I would not worry to much about this. Prostate cancer is common in your husbands age group, and if it is there it is usually slow growing. Even if your husband has it he is likely to die of something else (the number one cause of death of active prostate cancer patients is heart disease). It sounds like your doctor wants to watch the psa and look at the trend. If the trend starts to shoot up, he may request a biopsy to see how much cancer there is and how aggressive it is. Aggressive prostate cancer is not common. But slow growing prostate cancer that does not threaten your life is common.

Do not worry.

 Gene

Showing 1 - 10 of 81

Page 1 of 9

Loading...

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.

We care about your feedback. Let us know how we can improve your CancerCompass experience.