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Decreased Mobility

lollybob
Posts: 2
Joined: Jan 2012

Hello, my father has prostrate cancer with mets to his bones and lymph nodes. Gleason 9. Current PSA 99. He has severe bone pain in his right hip which is shooting down to his right leg and the doctors have said that because the tumours around his hip bone have comprised the bone so much that he needs to keep off his feet permanently (He has an artificial right hip). L5 factured also. Xrays showed no breakage or fracture in his right hip and he couldn't get a MRI done that day because he couldn't straighten his leg as he was in so much pain. We are not sure where the pain is coming from. The pain seems to come with movement but setles after 15 minutes or so when he finds the most comfortable position to sit/lie in. He is currently on the hormone injection firmagon and Zometa(for the last 12 months). His consultant has advised that he may have to start on taxatere as he may be hormone refractory. Has anyone any advice or experienced similar symptoms. Do you think he could regain mobility again? Any advice would be great... He has a good appetite and no renal problems...

VascodaGama's picture
VascodaGama
Posts: 1563
Joined: Nov 2010

Lolly

Welcome to the board.
Some guys with systemic disease reported similar symptoms as those of your father. Hormonal treatment (HT) is the typical treatment done initially but some doctors prefer to to move on chemotherapy when the case is well advanced. That may be the reason why his doctor is suggesting Taxotere.
Gleason score 9 is an aggressive type of cancer and the systemic characteristics at the one year mark since the start of HT may be indicative of refractory. However, such condition can only be accessed through tests.

A testosterone tests can check for that condition. High PSA in a low testosterone “environment” (less than 30) is indicative of refractory. In another view, high PSA in a High testosterone “environment” is indicative that the Firmagon is not effective.
In such cases, doctors usually manipulate the protocols before given up. Drugs are changed by similar ones or added and used in combination or the potency is increased. In your dad’s case you do not indicate that his doctor has checked refractory properly.

Can you give us more details on his conditions and diagnoses?
How old is he? What is his PSA chronology (before HT and along the period) ? Has he gotten other tests, such as; Testosterone, Bone densitometer, Any image test result taken before?
Any urine test result?

Zometa is a bisphosphonate typically recommended to patients with metastases to bone. In some cases this drug can reverse bone loss therefore helping in the fight against cancer in bone. Recently doctors recommend a more powerful drug named Xgeva which has proved to be effective in attacking the cancer directly. It works with two aims; against cancer and against bone loss.

You may look for any possibilities that would allow your dad of participating in a clinical trial. These trials are excellent because they are safe and provide the unique possibility of trying the newer drugs that have already proven to be effective in systemic cases.
Abiraterone acetate is one of them. Another is Alpharadin which initial trial was stopped because it worked so well in curing bone metastases that the trial doctors decided to start administering the drug to the placebo group of patients, for ethical reasons.

You can discuss the above with your dad’s doctor and read details in this link;
http://www.youtube.com/watch?v=nDvY7opm3Fs
http://www.press.bayer.com/baynews/baynews.nsf/ID/DD01CFA9EA4054EEC1257914003273EB

Here is the link to the clinical trials;
http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=9925507

A better protocol may render better outcomes in your dad which surely would alleviate his pain and allow him to walk normally again. In future his doctor may recommend radiation of those cancer spots to relief pain.

Your dad should be aware of the side effects from the treatments. You can do researches in the net typing the name of the drugs and treatments.

Hope for the best.

VGama

lollybob
Posts: 2
Joined: Jan 2012

Hello VGama, thanks you so much for your very informative post. All this information is very helpful. My father is only 58. Here is his history. Diagnosed PCa in January 2011 (All we know is the PSA was above 100 - how much we were never told). Started on Firmagon. Monthly PSA gradually went down to 7 and then started to go up

July 2011 14.7
August 2011 19.3
September 16.6
November 41.6
December 52
January 97 and is currently 99 at end January 2012.

Started on Casodex in November 2011, 50mg.

He has had radiotheraphy already for spinal cord compression and some in his hip for pain. The bone mets were very advanced when he was initially diagnosed. Ten shots and five shots of radiotheraphy. No side effects.

Blood has been fine apart from his haemoglobin has been low on two occasions (shortness of breath and fatigue) and he recently got a blood transfusion in December.

He has had no Testosterone or Bone densitometer test that I know of but he is due a CT scan and another MRI scan in two weeks. His consultant said that he will know by this if he is hormone refractory and if so start chemo.

The reduced mobility is nearly the hardest part as he was a very active man. Do you think that if the chemo reduces the tumours in the bones and that he may be able to walk again....

VascodaGama's picture
VascodaGama
Posts: 1563
Joined: Nov 2010

Lolly

Unfortunately I do not know if any improvement can be expected in your father’s conditions with the use of chemotherapy. However, some guys in similar status, very advanced, have reported to get relief from pain and saw their PSA to go down. These, however, are for short periods of nearly 2 years, requiring to be repeated along his journey. Chemotherapy has nasty side effects which takes many to try to avoid it as much as they can.

A newer chemo drug recently approved by FDA is the Jevtana. This seems to cause lesser side effects and get similar outcomes as those of Taxotere.
Chemo drugs causes anemia, nausea, and low levels of certain white blood cells which in your father’s past experience may aggravate his haemoglobin problem.
Chemotherapy is sort of target medication which must be done under constant vigilance by specialists oncologists. You should get second opinions from other doctors.
http://www.inpharm.com/news/151785/sanofi-prostate-cancer-drug-jevtana-approved-europe
http://www.jevtana.com/

I am not a doctor and my knowledge is that of a “layman”. In any case, I think that your father should try a more aggressive form of hormonal treatment before starting chemo. His cancer may be still hormone dependent. The protocol his doctor have administer seems to be not “in line” with the protocols used in advanced patients.

A mono blockade with the antagonist Firmagon for a guy with a PSA over 100th is not sufficient. The doctor should have started your father from the beginning with a combination of several blockades adding Casodex and a 5-ARI drug to avoid the cancer from feeding on testosterone and dihydrotestosterone. He also should recommend tests other than PSA to check for the drug’s effectiveness. It is typical of urologists to miss a testosterone test.
The CT and MRI scans cannot identify refractory. These scans will only take a picture of those areas affecting his movements. They may provide clues to the areas that may need to be radiated. The hormonal refractory condition is declared once all the possible ways/protocols of HT fail. This relates to the time when the cancer stops of being hormone dependant and it starts to feed on antiandrogens (Casodex). When at this status doctors usually start a second line HT with other drugs such as Ketoconazole and/or Zytiga, before getting into the traditional chemo.
You can read in this link about hormonal refractory prostate cancer (HRPC);
http://www.prostate-cancer.org/pcricms/node/208

Specialists in prostate cancer use higher dosages of Casodex when the traditional 50mg fails. Dr. Myers (in my opinion the best PCa oncologist in the world) puts his patients on 150 mg daily to get the patient into remission levels. Surely, care must be done to avoid anemia or other symptoms, using side medication and supplements.
Another condition to be addressed is hypogonadism which may cause heart problems and diabetes.

I recommend you this book that addresses well your fathers’ case;
“Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers.

Your father is in very precarious status and I would recommend you of getting him to proper clinic that follows the latest methods in the care of systemic prostate cancer.

Hope my insight is of help to you.

VGama

jogger
Posts: 47
Joined: Nov 2009

Hello Vgama,

First, I have to congratulate you for your welcome contribution to this forum. In your post you said the following:

"A mono blockade with the antagonist Firmagon for a guy with a PSA over 100th is not sufficient." I realize that each prostate cancer patient's situation is different, so it would not be surprising to know that I started on Firmagon with a PSA of 800 (800) at age 78. That number went down to .5 (.5) during my 16 monthly treatments. Now that I am 'on vacation' from treatments my PSA is going up.

Again, thanks for your knowledgeable input.

Jack (former jogger)

VascodaGama's picture
VascodaGama
Posts: 1563
Joined: Nov 2010

Jack – (Jogger)

Thanks for tuning in. Surely you are to be congratulated for the success in arresting down your PSA.
I am very glad to know that you continue the vacation OFF-drug. The PSA may rise again but you know that you got a threshold to trigger a start with the shots. I wonder what the PSA is now and if you have any symptoms. I sincerely recommend you to test the testosterone level together with PSA in the follow up and that you get a bone density scan (DEXA) for checking bone loss (osteoporosis), not a bone scan.
Hopefully the numbers are OK and you can continue your relief from the side effects.

Regarding Lolly7s father case, as you comment, not everyone can expect equal status to their cases. In fact several conditions are required to your achievement and in your case it has been the type of cancer that responds well to hormonal manipulations.
Lolly’s father is not so fortunate and in his case Firmagon did not arrest the PSA down in the 12 months he has been on the drug. Surely both cases are typical in PCa and I should have written that “in some guys it is sufficient”.

I wanted to emphases on the benefit he may get in changing protocols. This is a tactic used by famous oncologists in the treatment of phase IV patients before starting Chemo.
A rising PSA on ADT2 is more convincing to diagnose a patient with hormone refractory. Even though, the potency of the antiandrogen of 50mg is increased to 150 (Schulz) or 200 (Myers standards) and a testosterone test is done to rule refractory. Steady increase of PSA in low testosterone environment is what classifies it.

In my case I would take Zytiga and MDV3100 (under FDA approval), before embarking on chemo. Resent researches on causes for hormone refractory prostate cancer (HRPC) have shown that treatments to this cohort of patients did not account for the intratumoral activity of cancer that precursor the condition of refractory to typical hormonal blockades. The newer drugs address the problem at the cells androgens synthesis.

If Lolly’s father cannot manage with the traditional protocols then he may consider clinical trials where he could avail the newer series of drugs for intratumoral blockades, like; TOK001, Orteronel, ARN509, etc.
Well, you know that my lay opinions should be followed with consultations to the proper specialists.

Thanks again for the post and my wishes for a continuous “travel” with lesser bumps.

Regards
VGama

ralph.townsend1's picture
ralph.townsend1
Posts: 353
Joined: Feb 2012

VGama,

Today VA Doctor call me and said that had proved to give me Zytiga, as long as I do Blood test every 20-30 days for the first 3 months with VA. The doctor down at MD Anderson that we would try Provenge or Zytiga before chemo. I'm at the two month mark with Zytiga and it ok, and my last liver test was fine. PSA at .3. My hip, and leg pain has went away.

jogger
Posts: 47
Joined: Nov 2009

Hi VGama,

Thanks for your reply. As usual, you covered a lot of ground. You certainly have an insatiable curiosity about specific aspects of guys' situations. For instance, I had mentioned that my PSA went up and you asked to give you the numbers. Well, two months after my treatments ended my PSA was .5. Then two months later it was 4. I said to myself "Wow" but the urologist did not seem concerned and gave me 3 months vacation time. My Testosterone 2 months after treatment was 5. Two months later it was 25, which is considered by Dr. Meyers to be a castrate level. You indicated that it was important to have Testosterone checked. My internist, who practices integrative medicine, would have me take testosterone supplements. Instead I have elected to take DHEA and Boron, both of which supposedly will increase testosterone somewhat. What would be your take on that? I have seen Dr. Meyer's video where he recommends testosterone supplements and estradiol. I haven't studied the matter enough so I don't know how it's supposed to work and I can't figure out if it is recommended for all guys or in certain situations only. I forget, is ADT2 an agonist plus an antiandrogen, or is it an antiandrogen plus a 5AR inhibitor?

Jack

VascodaGama's picture
VascodaGama
Posts: 1563
Joined: Nov 2010

Jack (Jogger), my dear Old Buddy.

In previous posts we wrote about your progress and the importance of follow-up tests.
http://csn.cancer.org/node/229317#comment-1147641

I recall that you have started the OFF-drugs vacation in May 2011 (16 months on ADT1). Your PSA and Testosterone were very low (0.5 and 5 respectively). In October 2011 I believe you got treatment to improve your testosterone levels and that was reflected in the increase of T to 245 ng/dL.
I wonder what the numbers are presently. You may want to share the info or you just keep it to yourself. At 80 years old you are my senior and I respect your wishes. Nevertheless, you may get better opinions from the guys here if you provide more details of your case.
I just would like you to consider and get tested as I commented in my answer to you at Daddysgirl thread, particularly on iron deficiency (anemia).

DHEA (dehydroepiandrosterone) is a hormone precursor to testosterone and estrogen. It is known to improve energy levels, improve sleeping and the ability to handle stresses (less anxiety).
Boron helps in hormone metabolism. Therefore it helps in the relationship between testosterone and body functions. Supplements of boron seem to be not the best way to absorb the chemical element. You can change your diet instead to get it from foods like cabbages, nuts, fruits and the FANTASTIC red wine.

Here is a link of Medline Plus;
http://www.nlm.nih.gov/medlineplus/druginfo/natural/894.html

I am not a doctor and I believe that your internist is doing a good job by recommending you TRT. If the present levels are still low you can try estradiol patches. You need to be vigilant due to your previous history with the triple bypass.

ADT2 stands for double blockade usually referring to the combi of an agonist plus an antiandrogen. However, ADT nowadays is also referred as ADT4 due to second generation drugs to manipulate intratumoral blockade. This new “stuff” would be something to follow in your next cycle of HT. I highly recommend you to research on the newer antagonist/antiandrogen named MDV3100. Please inquire with your doctor.

Here is the link about our exchanged opinions on ADT in 2010 (one of my initial posts in this forum);
http://csn.cancer.org/node/204633#comment-950159

I wish you a continuous good “journey”.

Best Regards
VGama

jogger
Posts: 47
Joined: Nov 2009

Hello again VGama,

Thank you ever so much for your comprehensive response. To clarify, my T was 5 after my treatments and, without taking any supplements, it went up to 26. It was then that I began with the DHEA and Boron. Regarding the use of estradiol, does PSA doublng time have any bearing on whether it is advisable or not to continue taking estradiol? I fully expect you to know the answer to that question, but if not, no need to apologize. -:) As to red wine, you can bet I diligently take my daily glass. Thanks for taking time to post the links.

BTW I wish there was a way of changing my forum name of jogger because I can't do that any longer, not to mention running marathons. I've had low back problems for years, and now it is quite severe so that I have to do most of my exercises on my back. Finally, it's good to know that there is someone out there to help guide me on my 'journey.'

Jack

VascodaGama's picture
VascodaGama
Posts: 1563
Joined: Nov 2010

Jack

Thanks for the beautiful words; however I do not think it a good idea to value my opinions. You should discuss all with your health care provider.

I could not understand your question. I do not know if you are referring to a doubling threshold in PSA due to cancer activity, in other words, due to treatment failure, or if you are referring to an increase in PSA due to intakes of estradiol.

As far as I can tell, there is no relationship between PSADT and the “continuation” on estradiol. In fact, estradiol is used to cause castrate levels in prostate cancer patients. Lower testosterone levels are expected with its use.
Just have a look in this study. They comment like this;

“….All patients achieved castrate levels of testosterone within 3 weeks and had biochemical evidence of disease regression….”
http://www.ncbi.nlm.nih.gov/pubmed/12686820

In my lay opinion, Estradiol is not the “baddy”, it is made from testosterone and It is a sex hormone therefore increases libido and it also acts on bone and is taken to confront “menopause-like” symptoms. However, it attaches to cells receptors and it may cause hormone refractory conditions. One must use it under vigilance.

Males have low levels which may be affected by hormonal manipulations. In any case It seems that by increasing its levels, the testosterone castration levels (<35ng/dL) are not affected.
In this link you can read about comments from experts on the matter. The author of the article is Jacqueline Strax who was my “angel guide” in 2000 when I was wondering what was happening to me, after being diagnosed. Not many forums or info were available at those times, but she answered my questions.

http://www.psa-rising.com/med/hormonal/estradiolpatch5.html

In your case patches are ideal because of your previous history with the triple bypass. These are known to bypasses the liver (against the oral pill), therefore not affecting the proteins that regulate blood clotting.

At your age, no one would be expecting to see you competing at the London Olympic Marathon, but you could try. What is the problem with your name? It looks great to me.
Anyway, I promise not to call you again JOGGER.

Regards
VGama

jogger
Posts: 47
Joined: Nov 2009

Hello VGama,

I appreciate your taking time to answer my post. In my question about PSA doubling time I should have made it clear that I meant doubling time owing to treatment failure. I had been confused by Dr. Meyer's statements and videos regarding Testosterone treatment and estradiol. In my ignorance, I thought they were contradictory, but now I reviewed his video on Testosterone replacement in which he states he cannot prescribe testosterone replacement for men with advanced cancer, as opposed to men with Gleason 6, (which he says is not even cancer). I followed your link to the article by J. Strax, and it was enlightening. Regarding marathons, I did the NYC marathon when I was 50, 60 and 70 and up to a couple of years ago I thought I could make it this year, but it's just as well (and this is what I think is called sour grapes) because I hear the entry fee is $255, which is necessary to cover the expense of providing security for the runners and crowds.

Ciao for now

Jack

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