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Advanced Prostate Cancer
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Update on husband's condition - hopeful?

First off, a huge 'Thank-you' to all who replied to my posting a few days ago. We met with a nurse practitioner and the regular MO on Monday to discuss 'what's next' for Mike. It's clear that something else needs to be done -- the Lupron and Casodex are no longer keeping his PSA at a reasonable level. A few months ago it was at 3 -- now at 21.48. His MRI scans from last Thursday were reviewed and there were no real surprises there: his femur (I believe the left side) is not in good shape and there appear to be some small spots in the spinal area that may be impinging on some nerves (hence the back pain), but the MO was extremely concerned with his right hip. There is 'something' approximately 2.5 cm in diameter - he couldn't say whether it was a solid mass or erosion of bone due to metastasis - but Dr. stated that this is definitely at risk for breakage. I asked about chemo and he said that was his first choice. However, with the possibility of breakage to bones and Mike's pain levels, he wants radiation to these areas to help knock back the cancer and reduce his daily discomfort which even the morphine can't seem to help. Additionally, he said that Taxotere can't be administered at the same time as any radiation. (I didn't know that - always learning something new). MO stated that chemo is more of 50/50 proposition as opposed to a 90 percent chance of success (cancer and pain) with the radiation. He is also going to start Mike on Zytiga and Prednisone. When I told Mike pre-visit that I thought he might be put on Zytiga and the cost of the drug, his response was 'OH, COME ON'! We do have fairly decent insurance and were told that 'there are ways around it.' What ways? We have BCBS/TX (weird, since we live in WI), and I'm curious to know about the out-of-pocket expense. Moreover, though, I'd really like to know what others may have experienced with this drug combo symptom-wise. You may have already figured this out, but my husband is a fairly private person (he doesn't mind my writing here and has said he appreciates the research), but he does not like to talk about his cancer. The oldest of eight siblings, he is one of FOUR dx with cancer in recent years - two with kidney, two prostate - and lost his younger brother to metastatic kidney cancer in 2014. While he doesn't say so, I believe he's convinced that the same fate awaits him sooner rather than later. And when someone is in pain, I can understand not being optimistic or enthusiastic. Any thoughts about these treatments? I think he really wants to fight the cancer, but the physical pain makes it difficult. Any input is appreciated.

Thanks! Genny

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Radiation in this situation should be good.

As for out of pocket costs, does your policy have an “out of pocket maximum”? When I was on Zytiga, I always hit the max with the first order and never had a co-pay afterward.

The side effects of Zytiga are similar to Lupron—just more so. The prednisone can lead to weight gain and blood sugar increases, so he’ll want to be careful of those.

Good luck!

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Just in case you missed this:https://healthunlocked.com/prostate-cancer-caregivers

Prostate Cancer Caregiver Community Launches!

You have to take care care of yourself if you want to take care of the man in your life with prostate cancer. Our new community is a place to share strategies for all aspects caring. Emotional, medical, relationship issues, fear of impending grief, sex, love...everything that caregivers feel and think about, but may not feel comfortable discussing in a forum of men diagnosed with prostate cancer.

Please join at: healthunlocked.com/prostate...

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Thanks, Darryl - I'll take a look at the forum. Seems it might be a good place for me.

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It’s less than 12 hours old so please be among the first posters

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Done :)

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As for prescriptions, copays, and deliveries of drugs like Zytiga, you can probably take out your Insurance coverage paperwork to confirm the exact plan name and type, and then go on-line to look-up the applicable Drug Formulary for 2018. Once there, you can read some of the introductory paragraphs, and particularly note what they say about coverage copays by Tiers, and any other restrictions or limitations. For example, Zytiga might be listed as a Tier 5 drug, which has implications for copays, and perhaps also a Prior Approval (PA) drug that will need to have the prescribing doctor submit/call with whatever is needed to obtain the prior approval at first. It may also be a Dispensing Limited drug that will only be delivered in 30 day increments or something to that effect. It may also be a Limited Distribution drug that may be required to be filled via a selected Specialty Pharmacy (e.g. something like AllianceRx Walgreens Prime) which may establish the prescription then call you (or you call them) to arrange an overnight shipment from Florida (or wherever) to your front door (or local pharmacy pick-up point if you will be working or away instead of at home during the day) each month, and perhaps also the convenient billing of the copay to your credit card account, too.

See also,

bcbstx.com/provider/pdf/dru...

I have a federal nation-wide version of a Blue Cross Formulary/Plan as a secondary insurance to basic Medicare. The similarly expensive drug Xtandi is covered in this way by a Speciality Pharmacy. My copay comes to $35 per month.

Charles

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Thanks for the info, Charles. When I picked up a couple of other prescriptions for my husband at CVS yesterday I inquired about Zytiga. The pharmacist manager couldn't tell me - said that it would probably be covered by a 'specialty pharmacy' just like you said. The MO also mentioned something about getting it approved, checking certain information, etc. Kind of overwhelming. . . this is all brand-new to to us, but at least we have a better idea of what we're dealing with. And hoping for good results to boot.

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Waubesa94 go online check out the Patient Access Network ( PAN foundation ). There several foundations that can help with copay assistance. These folks are great and if they can't help you they will you may be able to help.

Dennis

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Genny,

Google zytiga and look for Janssen the manuf. of the drug. They have a program where zytiga can cost as little as $10. Pain is debilitating and has affected my outlook for the future, my interest in taking care of myself and I tend to push people away. Getting a handle on his pain is as important as his psa.

While I was taking Z I experienced a lot of forgetfulness and made all kinds of lists to help me and thought about where I might look for something in the future when I forgot where I put it and I would then put the thing there. I also experienced some fatigue but walking and exercise helped.

I also never say that I have cancer. Rather I say cancer is inside me. Its a foreign intruder that is not a part of me. Its a small thing to change my language but it renews my fighting attitude. I have accepted that my death will be sooner than I want so I have decided to make the time left for me the best it can be. However it has taken me some time to arrive at this outlook. Before that I was feeling why me. Anger and sadness and feeling powerless were my go to emotions.

Sending you you prayers and positive energy.

Charlie

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Hi

I’ve been Zytiga plus Prednisone for over 6 years. The main thing to watch for is liver function. I had full bloods done every 4 weeks for 6 years, it’s only now they’re happy to change that to every 8 weeks.

The other main effect I’ve had is severe muscle wastage in my legs, and more recently my arms. That’s due to the double hit my testosterone is getting, and coupled with my PCa damaged femurs has made walking an£ standing difficult, but so what, otherwise I’m fit and well. The other symptoms are all those linked with ADT. I’ve now got a memory like a sieve, but that might be old age too.

For me, Zytiga has been amazing. I hope your hubby is as successful.🤓

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Sorry that your husband is having so many issues. I live in Michigan but my insurance is from BCBS of New Jersey. That is where my employer is based. When I looked at the BCBS Texas it lists that they cover Zytiga. Below is a link

bcbstx.com/pdf/rx/rx-list-b...

However, I do not know what the copay is. For my BCBS of Nee Jersey I pay $30/month copay (up from $25/month last year).

You can also look at sights like the below for help in paying the cost.

jjpaf.org/

Please note that J&J lost some major patent coverage for Zytiga earlier this year. I expect that the cost should be dropping soon as the potential of generics comes online.

A lot of times the doctors put you on something without telling you why. Zytiga stops testosterone production from the testis, adrenal gland and even from the prostate cancer cells. Because of the adrenal gland you also have to take prednisone.

Please know that we are all pulling and praying for the two of you. Please also take care of yourself. I am totally amazed at the strength of caregivers. God Bless you all! Please keep us updated on what is going on. After all people like us we have to stick together!

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My husband is on Zytiga without Prednisone, because the prednisone made him a full blown diabetic, where he has to take insulin shots etc & test his blood sugar often. He has become forgetful, depressed, and is in extreme pain. He is 62, diagnosed end 2014, was one of the secret testers for an unnamed drug for 2.5 years that put him in remission (til last summer)..that drug now has a name...Ibrance...it stopped working last summer. We were wondering what could be used in place of prednisone...or why take it at all (side effects?)... my husband has a strong desire to live, and strong faith in God.

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Sorry, I do not know of a substitute for prednisone. If he is taking 10 mg of prednisone see if the Dr will reduce it to 5 mg (that is what I am on).

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Husband has used Zytiga without Prednisone since last Fall, and his PDA is around 4. He also takes Lupron shots every 3 months. He was told by several doctors, all at once, in end 2014 that there was nothing they could do...sorry, as cancer had metasized to his lymph nodes extensively... Prednisone made his blood sugar shoot over 600...and he had to go to emergency. A month ago he had to go to emergency again, for unknown stomach pain. Nothing could be found. He was put on morphine twice a day, but has since stopped... He was feeling too depressed.

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Have the offered Xtandi? It is not chemo. It works by preventing the cancer cells from being able to process testosterone, which is there food.

Please know we are all pulling for both of you. Please tell him that he had more people than he knows pulling for him (and you)!

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Thank you for your help and encouragement. He probably will be offered Xtandi when Zytiga stops working. Ibrance also worked by stopping the testosterone, so cancer could not feed... along with Lupron shots & Casodex (first 2.5 years)... He is very fatigued, and had some difficulty getting up to take Zytiga at 6am alarm. A friend of ours, same exact age, had same prostate cancer that metastasized to his bones, and he died recently. His attitude & faith wasn't as positive as my husband's. Another concern is the extreme heat radiating from my husband's body at various times, as Zytiga fights the cancer... he has severe arthritis...he feels now his thumb is popping out of its socket at times, and his shoulder bones, his feet, and hips.

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Prayers going your way. The heat you feel may be the hot flashes that you get on Hormonal therapy.

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Thanks all for your responses and the new info -- all very encouraging. I certainly do appreciate the links you provided and will get on that asap. In some ways, the monetary portion is my least concern, but still necessary to know what we're dealing with on that end in addition to side effects of this protocol.

Hoping that everyone is having a good day and that at some future point, we won't have to 'go on meeting like this', that an actual cure can be found for this monster.

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Hi Jenny.

First of all, I am sorry to hear that you and your husband are in this situation.

I hope they will do radiation first and then follow it up with Chemo and Zytiga. My husband has never had both at the same time, but, you know, I think it is worth a try. Because even if the side-effects are difficult to bear for a while, at least you are fighting against the cancer hard. That is very important.

I know what you mean about your husband being a private person. So is mine. He didn't sign up here but said that I would be very welcome to do it and to share and research but he himself wouldn't like to do it. Interesting, isn't it?

I wish you good luck.

Mel and Paul.

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