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  • 2nd Opinion

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    Old 09-11-2019, 08:54 PM   #1
    mnags
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    2nd Opinion

    After doing a lot of research that was recommended by some of the people on here and some other sites. And realizing that my husbands Dr seemed to have dropped the ball as far as his treatment. He has stage 4 PC with mets to 4 areas in the pelvic region. He has him on Lupron for 6 months, an injection every 3 months and wasn't planning to see him again until the end of 6 months. We called our HMO and asked to get a second opinion, first they recommended another Urologist, but fortunately after he reviewed my husbands case, he said he needed to be seen by Oncology. This time I came armed with a load of questions and was ready to do battle if need be. But, I didn't need to, the Dr was answering my questions before I could ask them. She had a plan all figured out for him and seemed to be just what we hoped for. I did ask her why we weren't referred to her in the first place and she didn't have an answer for that, just that he should have been. One great thing is that even before my husband had his first Lupron injection, he was on Casodex for 2 weeks and his PSA had gone from 159.4 to 30. We were excited about that.
    We had a vacation planned for this fall, we go every year for a month in our RV and take our toys and ride off road in the mountains of Utah. We have a favorite place and reserve and pay for our RV sites a year in advance and we also meet up with some friends. So, we asked her if we should cancel and she said no, he can do it all when you get home. So, when we return, he has an appointment with radiation to consult about starting that, if needed. If he doesn't start radiation she is putting him on Zytiga and Prednisone and he will have Zometa infusions once a month. And she plans to see him once a month. I'm happy she is going after this aggressively and certainly hope it works, but it also makes me sad that he needs all this, it's kind of a reality check. And I'm torn about going on our trip but unless she changes her mind and says he needs it done now, I think it will be good for both of us. But, I'm kind of overwhelmed with it all, thinking about him constantly and trying to plan for a month long trip is a lot. And our grown daughters are taking all this very hard and I'm trying to be up beat and positive for them. And even though they have their own families, they are being very clingy. Anyway just wanted to update since I haven't posted in a couple weeks. And thank you to the gentlemen who gave me advice and listed resources. I feel like I've learned a new language...
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    Old 09-13-2019, 09:48 AM   #2
    IADT3since2000
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    Re: 2nd Opinion

    Marie, itís good to see you back here, especially for that fine progress for you and your husband. That is a wonderful plunge in your husbandís PSA level! The level should continue to decline sharply.

    I am so glad you are now on a sound path with an oncologist who strikes me as knowing what she is doing.

    You need not worry about the vacation. Lupron will be knocking the cancer way back on its heels, though it is rarely curative, and the cancer usually finds a way around the Lupron blockade after some time, probably a long time. Before that time comes, hopefully, radiation, with advance, simultaneous, and after-treatment support from Lupron, WILL wipe out the cancer or at least put it in the kind of dormancy that can last for many years, perhaps a lifetime. (And during that time many advances in technology will have occurred.) (I like Casodex to coincide with Lupron, but many doctors shy away from that, though there is some supportive research data; I suspect the Lupron, even without continued Casodex will be good enough to provide excellent support of radiation. I was also on dutasteride/Avodart during my fourth round of ADT, the one that supported my 2013 radiation, but that is quite controversial. Some drug is needed to protect bone mineral density while your husband is on Lupron, and Zometa is a reasonable choice. I was on transdermal estradiol patches during that fourth round, to protect bone density.) ADT works with radiation to make the outcomes better than with either alone, and, as you are likely aware, radiation is often curative.

    Personally, I would do the radiation plus Lupron, etc. now and hold the Zytiga plus prednisone in reserve, but Iím a layman and the oncologist almost surely has a much better view of the value of options and sequencing.

    Be sure to ask the radiation oncologist about SPACEOAR to protect the rectum during radiation. It is probably not needed for everyone, but it seems likely that your husband will get a pelvic dose of radiation, and SPACEOAR makes sense to me.

    Also, ask the oncologist and radiation oncologist about a prescription for the old diabetes drug metformin. There is good data Ė not proof yet but good data Ė indicating that metformin for radiation patients, even if not diabetic, leads to substantially superior radiation results and that it also decreases some of the main side effects for ADT, which would include Lupron. Here are links to two key papers about this that you can find at www.pubmed.gov: https://www.ncbi.nlm.nih.gov/pubmed/23287698 (with a free link to the complete paper, including the tables that show striking differences in success at a center of radiation excellence depending on metformin use) and https://www.ncbi.nlm.nih.gov/pubmed/21933330 (also with a free link to the complete paper). You might want to print copies of the papers to show them to the doctors, though they may already be aware of these roles for metformin.

    It is naturally hard for loved ones, like your daughters, to handle scary news like this. You might want to assure them that for men like your husband, who do not have distant metastases to bones at diagnosis, the survival percentage for prostate cancer patient at fifteen years after diagnosis and good treatment is in the mid-90s compared to men the same age who do not have prostate cancer! It is going to be a war, but your family has an excellent chance to be on the survival side of this and with much quality of life intact. I can give you more information on the background of the survival information if you want it.

    Continued good luck!

     
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    Old 09-14-2019, 02:53 PM   #3
    mnags
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    Re: 2nd Opinion

    Thank you!
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