Advanced Prostate Cancer
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I’m new here...spouse starting Zytiga

Hi there..not sure if this is the right forum or not but I came across this site when I was researching Zytiga. My husband is 54 and was diagnosed with stage 4 prostate ca late 2014. PSA was 22 before surgery. The complicating factor is that he had exposure to debris on 9/11 as he was working in the North tower that day. He has since developed 2 other primary sources of cancer. He had a total thyroidectomy and now has a renal mass. He went off Lupron last March as the Dr. Said he could take a break. In August he returned from vacation and got PE’s. and they also saw an enlarged lymph node in the peri abdominal area for which he recently had targeted radiation. Yesterday we found out that the radiation did not work and now several other lymph nodes are enlarged. Also PSA went from 12 to 33. So the disease is progressing. My question is: what does life on Zytiga and Lupron look like? I know how my husband feels in Lupron (7/10 bad) but adding another ADT?? We are young ppl. 55 and 45. And if I could also ask for some honest advice that would be appreciated. Side note: I am a cardiac nurse that has been in practice for 21 yrs. I work in a cardiac cath lab. I see life and death every day. So, I might be a little jaded but I myself do not sugar coat reality.

Thanks again for the feedback!

Julia

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Hi Julia,

I understand all your concern. Since the day my husband was diagnosed in 2010, I wanted to be realistic thinking my husband was going to die soon.. oh boy I was so wrong. By the grace of God he is still here. His treatment right now is Lupron, Zytiga, Prednisone, and started Chemo January 19. All of that at once, I'm praying it will kill the cancer that has metastasize to 2 lymph nodes in pelvic area. He also had prostatectomy plus 37 session radiation. PSA September 2017 8.7 right now 0.1🙏 My Husband is 58 and I'm 44.

There is HOPE. I wish the best to you and your husband.

Sincerely,

Erika.

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Your at the right place---we have thousands of members, and they are world-wide. There are experts here in research, diet and nutrition, radiation, chemo----much from their own experience---but that also brings their Doctors and their decisions and protocol outlines to the party.

Stay posted---Zytiga, with Lupron/ADT a common protocol now and probably will give your husband certain relief.

Nalakrats

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Welcome to the group, and thank your husband for what he did for the country. So sorry that he is paying the price for it.

I was on Lupron for about a year when they added Zytiga (and prednisone). For me the addition of Zydid not change anything. I still had the same side effects as I had when I was only on Lupron. The biggest issue was finding a time where I could take Zytiga on an empty stomach. My medical oncologist put me on just half the normal dose of prednisone, perhaps that is why i did not notice any additional symptoms.

Your husband will need to get regular (monthly) blood work. Zytiga works by turning off the adrenal gland (that is why you have to take prednisone). It may cause hypertension [high blood pressure], hypokalemia [low levels of potassium in the blood], and fluid retention.

The best side effect for me is having more time with my wife. We still are active and try to make the most out of every day.

Again, I am so sorry that your husband is having so many issues. I firmly believe that it is harder on our caregivers than those with cancer. Please know you are not alone. Everyone here is pulling for the two of you! You both are now part of our family. As the saying goes, people like us we have to stick together!

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What was the rational for getting 5 mg. and not 10 mg. of prednisone?

Rich

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Welcome to the group! The rationale is the prednisone if taken by itself has a lot of nasty side effects. However, lucky for us, Zytiga counters most of them. That said my MO wanted me to be on the lowest dose possible. If you ask around here probably >95% of men taking Zytiga are on 10 mg not 5 mg. You should think of my dosage as the exception not the rule.

Hope that your spouse and you are both doing well. Cancer can be a very hard thing to deal with, both for the one with it as well as the caregiver. Here the two of you will never be alone. Remember, people like us we have to stick together!

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Didn't you mean that Zytiga has side effects that prednisone counteracts, instead of vice versa?

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Yes. Here is an article about it.

paact.help/adding-prednison...

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Thank you Dr. Who. I will discuss the dose with my MO.

I too, have a Ph.D

Rich

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Hi DR WHO

I had been on Zytiga for the last five months. My MO has prescribed only 5 mg of predisone/daily for me. I don't have any severe side effect other than swelling above one knee.

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In my case, I had easy bruising from 10 mg prednisone. They cut it to 5 mg & the bruises weren't as deep, & the prednisone was just as effective.

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I will discuss this with my mo.

Thank you,

Rich

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Rich, They told be at Dana Farber that if a guy takes 5 mg it still allows the adrenals to produce,and less chance of adrenals losing ability to function

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Thank you Dan; I will discuss with my MO next month.

Rich

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Are you a Dr?

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All my comments come a fellow warrior. I have a PhD in chemistry not medicine. As a result of my training I try to find primary source articles that I can include and let the reader determine their worth. Please know that there are others here that are a lot more knowledgeable than me. Normally I try to point out that I am a chemist . If I forgot or led you to think otherwise then I am sorry.

I go by Dr_WHO as my initials are WHO. When I was working my co-workers called me “Dr. WHO” for decades. I carried it over to here.

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Oh no problem! Lol I got it just curious, you seem to be a great info source and appreciate your comments.

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I added Zytiga and prednisone recently. Really didn’t cause any additional side effects - and dropped my PSA. I’m 56 (diagnosed at 53 with stage 4, Gleason 8 and 1 met in spine). I still work full time and have been in 8 cities in the last week and a half. So, Julia, life is good on ADT and Zytiga. 😊

Hope you and your husband have a great response. Please keep us all posted - we are in this together - and always here to help.

James

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Hi

I’ve been on Zoladex plus Zytiga/Prednisone for the last 6 years. Other than the fact I’m still here despite a PSA just under 600 and 7 major bone Mets, I think you’re interested in side effects?

I am in pretty good shape, I have been tested every 4 weeks for the aforementioned issues, none of which have happened. Psychological effects were quite bad, the same as the menopause, depression, tearfulness, tired, weight gain. More importantly my cancer damaged femurs/legs have suffered the most, with severe muscle wastage which I found impossible to combat. This has left me somewhat disabled, but it’s a very small price to pay.

I still work (i’m The Managing Director (CEO) of a Media company) several hours a day and enjoy life to the full. It’s our 50th wedding anniversary in March so we are going to Dubai for a week.

Life goes on as before now, but with limitations. I can live with that🤓

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Hi Julia,

Zytiga wasn't available yet when I was in the earlier stages. When I did get it, I got almost 3 good years out of it. I had no side effects from it. I had easy bruising from prednisone, as I mentioned above. Also, I had to change my evil ways from eating until bedtime, so I could take Zytiga then.

Neal

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Have a great anniversary TommyTV! Yes the side effects suck. But you hit upon the best side effect, life and time with our loved ones!

God Bless.

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Good Morning JS12,

I have been in this battle for 5 1/2 years (please see bio for treatment history).

I was on triple blockade (Lupron, Casodex, and Avodart) and my Med Onc added Zytiga with prednisone. With aggressive cancer, you need to be aggressive in treating it.

I also developed PEs and was in hospital for 8 days as it ultimately was controlled by warfarin. Now on daily Lovenox.

All of these drugs have side effects, but they beat the alternative.

Best wishes. Never Give In.

Mark, Atlanta

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What's PE?

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JS12 said her husband had PEs.

They are pulmonary emboli, or blood clots in your lungs, usually from a deep vein thrombosis in one of your legs.

Extremely dangerous and sometimes called the "widow maker".

Mark, Atlanta

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Your husband is clearly a very active man. At a certain point the decision becomes about how desperate one is to live a little longer versus live a great deal more vibrantly during the time one has remaining.

From a personal perspective the surgery, treatments, lupron, bicalutamide, etc., made me utterly miserable and actually quite sickened. I have chosen to go out with gusto. No more RX for this old dude. i wish only the best for you and husband. Take care. He is an American hero.

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Your husband cheated death on 9/11. Outstanding! Think about cheating death again and do something more than palliative treatment. Let Mr suggest that you reasearch Dr. Robert Amato at the Texas Medical Center - he has researched genetiurolical cancer for over twent-five years and google Gourd Dancer Advanced Prostate Cancer or in this group. Keep kicking this bastard of a disease down.

Gourd Dancer

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Hi there,

Thanks for your suggestion. As we speak, my husband has decided to get a second opinion. Although Mayo has been good for us, we lost our oncologist that we started with about a year ago. She moved to Florida out of the Mayo system. She gave him 6 rounds of docitaxel back in 2015. He didn't quite meet the requirements at that time because he didn't have bone mets but she thought that because of his age and the aggressive nature of the cancer, it would be a good idea.

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