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Gleason 9 and Hormone Therapy

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Posted 8/30/2008 11:30 AM (GMT -6)
My original post "Gleason 9 Today" provided a wealth of information and encouragement. Now I need to ask about my treatment therapy.

Because the CT Scan showed lymph involvement and the Bone Scan showed a small involvement in the bone of my right hip and therefore I am told surgery, radiation and other forms of treatment are not an option for me.

I started taking Casodex 50mg on Thursday 8/28 and I am scheduled for my first Lupron shot on September 10.

I have several questions and hope that I can get straight answers as I don't always trust what the doctors tell me.

*What about side effects og Hormone Therapy? I hear hot flashes, impotence, loss of facial hair are some. 

*I am taking the Casodex for two weeks then the Lupron on 9/10 and then I stop the Casodex.

*I'm told that I can be on Lupron every 3-4 months forever...true?

*Anyone want to comment on the cost of Lupron? I got a call from the Hospital checking on my insurance and they said each shot is like $3000.00 and since my insurance has a co-pay and deductable they want their portion up front (god forbid they take a chance on getting their money). I was shocked at the cost. Anyone know if this is really the cost?

*Any stats on how long someone can survive on this treatment alone?

The oncologist said if the hormones don't work then I have to do chemo...but an oral version. Anyone hear of this therapy?

*What else can I expect..? Any advise..?

Thanks

Jack

 

Posted 8/30/2008 11:50 AM (GMT -6)
Hi Jack,
Sorry about the diagnosis. I face a tough road but we got there a bit earlier than you did. Here is my experience, and some of what I have studied...I am trying to stay proactive and I study this disease intimately. You will be around a long time and can survive your cancer.

> I have my facial hair but my chest hair, leg hair, and dark ark hair is reduced.
> I started Casodex and have stayed on it for the duration of my two years stint on HT Ending May '09
> Possibly true about the forever (I do 4 months), though you might want a second opinion on the radiation. If the cancer can be focally targeted then try HT then see if you can hit it.
> My Lupron is taken care of in my Co-Pay. 20.00 per visit. Yes 3k sounds right.
> I have seen between 2 and ten years before the disease becomes androgen independent. I understand there is a a case at 26 years. The standard is 2 to 5 before refractory begins, but that does not mean death. You need to read the book "Beating Prostate Cancer:Hormonal Therapy and Diet" by Charles "Snuffy" Myers. There are several cases like yours.
> Yes on oral chemo. DES, Ketocanozole, Sandostatin, Estrogen, Nilantin, etc. There are options before Taxotere. But the order of administration varries from doctor to doctor and patient to patient.  There are also studies and you need to be looking at them.

Stay positive and stay to your routine as much as you can. You need to avoid depression. You sound like a great guy and I am sure you are. My EM is open and will glladly chat with you. I can point you to more sites and find you more folks to talk to that are in your shoes. There is a great group here. But if you get to a question you can't get answered here, let me know...Most importantly ~~~~~~~~~~~~~~~~~~~ STAY POSITIVE!

Tony
Posted 8/30/2008 3:14 PM (GMT -6)

Hi Tony:

Thanks for the information.

I ordered the book "Beating Prostate Cancer:Hormonal Therapy and Diet" by Charles "Snuffy" Myers today and will look forward to its arrival.

I am approaching this in a very positive way but I'm trying to understand survival rates with my level of disease. I understand everyone is different but I'm hoping that I can get at least 15 years of quality life out of this.

I am going to check other oncologists regarding treatments and I also am going to a support group meeting here in NJ called CARES who do a lot of research into treatment options including alternative methods.

Thanks again,

Jack

Posted 8/30/2008 7:11 PM (GMT -6)

 VIEW IMAGE   Posted Today 12:30 PM (GMT -6)    VIEW IMAGEVIEW IMAGEVIEW IMAGE

Jack,

It's certainly good advice to obtain Dr Myers'  book which will answer many of your questions.

I have two friends currently on hormone treatment: one of them recently gave me a copy of Dr Myers' book which I found very informative and I also suggest it as essential reading for anyone who needs to undertake hormone treatment, as Dr Myers is one of the few experts on this subject. Dr Myers used hormone treatment for his own high risk PC 9 years ago and has used it extensively for many of his patients since then.

Both of my friends have been doing well on hormone therapy with few side issues. They have both remained active and improved their diet and lifestyle which does help a lot.  One had bone involvement when originally diagnosed a couple of years ago, but his most recent scan did not show up anyof the bone  hot spots that were evident previously.

Attached are comments on  some of your questions.

*What about side effects og Hormone Therapy? I hear hot flashes, impotence, loss of facial hair are some. "

YES these are POTENTIAL side effects but not everyone experiences extreme problems, and if they do they often subisde with time, improvement to lifestyle, diet and supplements or change to medication.

*I am taking the Casodex for two weeks then the Lupron on 9/10 and then I stop the Casodex. "

CASODEX needs to be taken for a few weeks at first, after that it's optional and depends on your response.

It can be reintroduced if required.

*I'm told that I can be on Lupron every 3-4 months forever...true? "

INTERMITTENT HORMONE TREATMENT  is sometimes used by men,  especially if they do experience side issues or if they want to have a break from it. They discontinue the treatment and monitor their PSA and hormone levels in the meantime.

*Anyone want to comment on the cost of Lupron? "

I DON'T KNOW  except to say that it is very expensive. 

*Any stats on how long someone can survive on this treatment alone? "

NO ONE KNOWS FOR SURE, but as you'll read in Dr Myers' book his view is that most men who are diagnosed as hormone resistand are often not, and this treatment can be effective for a lot longer than previously thought.

*What else can I expect..? Any advise..?

I AGREE WITH ADVICE GIVEN in the previous post.  I know it's often easier said than done, but do remain positive and active, improve your lifestyle wherever  possible, and research your subject as you are doing. All of this will make a huge difference to your quality of life and outcome.

Best wishes,

John

Posted 8/31/2008 8:09 AM (GMT -6)
Hello Jrack,

 

Side effects of HT include loss of libido (*), ED (*), hot flashes, weight gain, loss of muscle (*), hair loss, fatique, lack of energy (*), aches and pains, emotional stability (*), depression, spatial memory, anemia, bone density, and others. Many of these can be treated.

My own symptoms are marked with a (*) while on Intermittent Hormone Therapy for 1-year.

It seems that every doctor I talk to has a different protocol for HT. The protocol I followed is stated below.

By the way, my libido has not returned 1-month after stopping the HT except for the Avodart "maintenance". I think the effects of the medication may take a few months to wear off. Personally, I don't think this is a big deal.

3-monthly Zoladex shots costs about $1,100 a pop in Thailand.

Hope this helps.

Steve

 

Posted 8/31/2008 8:12 AM (GMT -6)

Sorry, it should be Jack. Steve

Posted 8/31/2008 8:48 AM (GMT -6)

Hi Jack:  (I wouldn't yell that in the airport)

My Lupron shots run $2600.  My co-pay is $25 and I believe the insurance actually pays the doctor around $1000.

I have been on Lupron since March 21st, taking 3-month shots. My urologist tells me HRT works for about 3 years, but in this forum I have heard longer.  I get a lot of hot flashes, loss of libido, decreased armpit hair and shrunken testicles.

I am due to start IMRT next week, although in my case we are looking at a 25% chance it will affect the outcome.  But, this is a percentage game and you have to play to win.

Stay positive.  Work out when you can to counteract the loss of muscle and keep your head together.

Good luck.

Posted 8/31/2008 9:04 AM (GMT -6)

Jack Z -

I"ve heard Dr. Myers name many times on this site and from guys in my man-to-man support group.  I think he is located in Virginia. Finding the right doctor can make a huge difference in your outcome.  Even if you have to travel to see him, it should be worth the trip.

- John

Posted 8/31/2008 5:34 PM (GMT -6)
Hi Jack,

You have received many good answers to your questions. about all that I can add is that some men have emotional problems with Lupron, I have noticed that when I attend a funeral that I tear up a little more than I usually do. The main side effect with me is hot flashes, they seem to be much more frequent at night or maybe I just don't notice them during the daytime. You will notice that your sex drive will diminish during your course of treatment. I have suffered loss of some leg hair, however no hair problems elsewhere. I did not take casodex, just started with Lupron depot and had no problems. The injection site gets a little sore for a couple of days, mine are given in the buttocks. You probably need to alternate sides. The cost of Lupron is tremendous. My shot is a three month shot and my doctor bills my insurance company $3004.00. They discount about 800.00 off that so they actually pay about 2200.00 I have three more shots to go to complete my 2 year course of treatment. I try to walk about 2 - 3 miles a day and do some light calisthenics. Overall I can say that I have had a positive experience with Lupron.
Good luck with your treatment. JWB.
Posted 8/31/2008 5:57 PM (GMT -6)
 

Jack, as you probably know, you are on a luteinizing hormone-releasing hormone agonists (LH-RH agonist) similar to the LH-RH agonist I am on (Zoladex).   First, there is not reason to believe your medication won't work.  You've probably been told that after some time - most likely a few years, you may become resistant to it. However, scientists are discovering new and promising treatments for prostate cancer at an incredible rate. I know some of the trials at Ohio State University Hospital ( James Cancer Hospital ) have several promising trials for advanced metastatic prostate cancer.  It's understandable that you would think what if this or that doesn't work, then what?  But really, it's best to work with one reality at a time - you are on a medication that in essence places the cancer in remission giving you plenty of time to hang in their and wait for a cure OR to use one of the other new meds that are being used to keep it in remission. From what I read, it is possible that had you never found out that you had prostate cancer, you may never have been the wiser - but since you are wiser, that increases you are certainly increasing your odds at beating this disease.

As for the LHRH, I read all the side effects on the net, and though I am new, I can't tell the medication is in me.  It is possible that you may lose a little bit of hair around your abdomen and perhaps genetilia.  The hair on your legs may thin some.  I have friends who are police officers and several of them grapple and say they shave their body hair similar to weight lifters -- I know, this is not about them -it's about you.  Take heart keep fighting and remember, you have a great deal of very empathic company.  I'll keep you updated on any changes that may occur in me if you like, and I'd appreaciate hearing your experiences as well.

+++++++++++++++++++++++++++++++++++++++

Early July 08 PSA 7.7 and my internist referred me to a urologist

Mid July 08 PSA 6.7 and the urologist performed a 12 core biopsy on me.

Late July 08 Biopsy back - 2 out of 12 cores were positive for cancer

Gleason scores were 3+4=7 and 4+4=8 : surgical urologist recommended surgical removal.

Late July 08 Bone scans turned out fine.

Second opion James Cancer Hopsital was told guided IMRT was as good as surgery - I chose

IMRT.. So what if I don't know how my edges turned out - regardless, I would have an increased PSA

and take LH-RH drugs.

8/08 had an MRI with an unfamiliar contrast material  -- all was well with the MRI.

8/08 Saw the medical oncologist, he recommended casodex qhs and Zoladex (3 month shot).

Now I wait to see what I'm to do next.

Posted 9/1/2008 4:37 PM (GMT -6)

Hi Jack,

I do not recall who made the comment about getting another read on the radiation but I second that remark. I am 8 sessions shy of completing the IMRT and I am taking the Lupron with the four month intervals. I have lymph node involvement and the first 25 sessions were "full pelvic". The oncologist is optimistic about my chance for remission. His take is 70% the urologist was a little more pessimistic at 18%. Either way it is better than no chance at all.

I took Casodex for two weeks prior to the Lupron shot and then for two weeks after. The purpose of the Casodex was to prevent tumor flare up. I guess it worked as I had no pain associated with the shot other than what is expected for an intramuscular shot. Acute pain on insertion and soreness for two or three days.

Q1. Ditto the ones you have listed. Also loss of hair on legs and weight gain.

Q2. Probably not "forever" My course is for two years. Then off for awhile to see what the radiation has accomplished. If the results are not good then will need to go on hormones again until become refractory. I have heard from some folks who have been off and on for ten years or more.

Q3 Cost of lupron. The makers are pretty proud of their product. I worked out a payment with my urologist that is significantly less than the $3000 list price. My urologist supplies the drug as well as giving the injection. I am uninsured so I have been paying the total on my treatment thus far. The urologist and oncologist have been great in working out the cost. The hospitals were not so kind. Up front full freight. Fought like a tiger to get 10% off for cash. They charge an uninsured patient 2.5 to 4 times an insured patient. They won't admit it but there is plenty of research that says they do. Sorry, I am getting on my soap box.

Q4. I do not know anything about the chemo. My oncologist asked if I would be interested in getting into a trial that uses taxotere as early intervention and as concurrent therapy. I declined for personal reasons.

As for what to expect I am at a loss. I am only a few months ahead of you and probably have some of the same concerns. I have read as much as I can on the disease and routinely read the posts here. (thanks to all of you who so freely share your experiences) I have made up my mind to continue my life without dwelling on the PCa. I have given it my best shot according to the experts I have consulted so I will not be tempted to say "I shoulda" down the road.

Jack, good luck with your treatment and choices.

Don

Posted 9/3/2008 7:29 PM (GMT -6)
Dear Jack....I cant add much to the above....except my husband was on lupron for 15 months .....It is VERY IMPORTANT for you to take extra calcium tablets. The lupron leaches calcium from the bones....(not a well known fact...even for doctors)....however, my husband now is looking at hip surgery after his surgery next week for an AUS.....You can check this out.....Also, your diet is very important...fruits and vegetables and eat very little red meat.. Drink pomegranite juice every day, and eat lots of blueberries. .You will find that you will love to eat ice cream....That is Fine!!! Good luck and keep smiling and forge ahead!! Di
Posted 9/4/2008 2:20 PM (GMT -6)

HI Jack,

You may also want to  check on using Zometa during your treatment as it helps the bones rejuvenate and remain stronger

Karen eyes

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