Update on myself and looking for all ... - Advanced Prostate...

Advanced Prostate Cancer

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Update on myself and looking for all of your wisdom out there.

RalphieJr64 profile image
16 Replies

Just got all of my bloodwork back. My PSA is steadily climbing. After 6 rounds of chemo, daily casodex, 2 Lupron shots. Went from 138 psa, down to .09. My MO then started the Zytiga, prednisone, and continual lupron shots. Went to 1.71 then 3.71 and now 7.78. I also had a colonoscopy two weeks ago. Found one polyp, waiting the results on that, I see my Mo tomorrow, supposed to discuss other clinical treatments. I do start 15 radiation sessions next week. I was marked for that two days ago. The mass on my prostate and pelvic bone are getting larger and the pain is getting much worse. Now take daily morphine as well as oxycodone. I did not handle the chemo well at all. I hope the radiation treatments as well as the continual zytiga will get my psa back to where it was. I've been on zytiga for a month and a half now. Hopefully she tells me were still headed in a positive direction tomorrow. Anyone who needs to know my beginnings can read my profile. I hope you are all having a peaceful night tonight. God bless you all.

Ralph

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RalphieJr64
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RyderLake2 profile image
RyderLake2

Hello Ralphie,

Perhaps more important than your PSA score is how fast your PSA is doubling. If your PSA has gone from 1.71 to 3.71 and then to 7.78 in month and a half while on Lupron and Zytiga then you have a very aggressive cancer and you need an aggressive treatment plan. Let us know what treatment options (other than radiation) your medical oncologist suggests.

Chances are someone on this site can give you first hand knowledge. Good luck!

RalphieJr64 profile image
RalphieJr64 in reply to RyderLake2

Thank you, tomorrow I will let everyone know the next treatment options that I will have available to me, if the radiation and zytiga prednisone don't pan out for me.

Canoehead profile image
Canoehead

Part of what makes this beast so challenging is that no two people respond the same. Think you should press your MO for gene mapping to see if you can benefit from targeted therapies. The only other thing I can offer is that you might think about giving up meat and dairy products and that you start pounding the supplements, such as Resveritrol, which have some science suggesting they help. And i’ll Offer my prayers, which in the big picture may be most important.

RalphieJr64 profile image
RalphieJr64 in reply to Canoehead

Thank you, I'll take the prayers all of the time. I will let everyone know the suggested treatment options available to me.

Caring7 profile image
Caring7

As noted by others - hard to know exactly per each case but I would suggest asking immediately about immunotherapy (Provenge) and/or RA223/Xofigo therapy. The pain issues may interfere with Provenge approval, but if they don't and your insurance will cover, try to get that done? You are ineligible for Provenge if there is organ involvement (bone is OK). The RA223 is a diffuse radiation treatment. It was good for my husband because he had a lot of "spreckles" (as I call them) of tumor in several places -- diffuse bits of tumor. It seems to have done something for pushing back the bone mets. But I'll be honest and say he had some side effects with Xofigo and stopped after 4 (of 6 recommended) doses. This, too, may have some limits on where you are.

You might also consider the alternative medication of Xtandi if the Zytiga is not working well. They are quite similar but if one doesn't hit maybe the other will? Also note, I think I read somewhere that Zytiga + Xofigo/RA223 was contraindicated in a recent study so be sure to check on that if you stay on the Xofigo.

That's a lot of complicated stuff, but just things to ask your MO about.

Depending where you live and what you can do -- seeing a prostate cancer expert at a research center could be a good idea. Does not replace your MO but it's sharing your case with someone who works only on Prostate Cancer and may have some big picture recommendations for you. My husband sees Dr. Small at UCSF. But there is Johns Hopkins, M.D. Anderson, Dana Farber, Sloan Kettering, Mayo, etc. We have to travel 2000 miles by air to see our "uber-oncologist" and it's totally worth it to us (1-2x/year).

Here's hoping you have better news at your upcoming appointment.

RalphieJr64 profile image
RalphieJr64 in reply to Caring7

Thank you, I hope the upcoming radiation treatments as well as the continual zytiga prednisone will start getting me back to where I was. I will be writing the other options available to me, in case it doesn't, so all can compare.

ctarleton profile image
ctarleton

You might ask your MO about ALL the other "Standard of Care" treatment options listed here in Guide 22 and Guide 23 of the NCCN Guidelines for Prostate Cancer (for Patients).

nccn.org/patients/guideline...

If your MO is giving you completely inadequate answers to your questions, you may want to specifically ask to whom you could be referred for an expedited second opinion with someone who specializes in advanced prostate cancer oncology. (If you provide your approximate location, others here may be able to assist in that, too.)

I would also consider genetic testing. Germ line testing is what you have inherited from your family. Somatic testing is done on biopsy tissue to test for recent mutations that have happened in tumors or metastases. This link courtesy of Allen Edel at Prostate Cancer News, Reviews, and Views might be of some initial help.

pcnrv.blogspot.com/2018/02/...

Charles

RalphieJr64 profile image
RalphieJr64 in reply to ctarleton

Thank you, I will be reading what you sent to me and the other options my mo gave me today. See what you think

Tall_Allen profile image
Tall_Allen

I hope the radiation helps relieve your pain. When Zytiga stops working, sometimes Xtandi will work for a while. Chemo can be repeated since it worked well for you. Ask your MO if Jevtana might be easier on you or harder. Provenge would be good start when you are having radiation - there may be synergistic effects. When Zytiga is done, you can have Xofigo. There are many options in clinical trials that you may qualify for.

RalphieJr64 profile image
RalphieJr64 in reply to Tall_Allen

Thank you Tall Allen, I saw my mo today to get other treatment options. I will be writing those down tomorrow to let everyone know and advice.

Heavy duty amigo... not cool ... all of the suffering.. God bless your soul... I’m praying for you to pull out of this and get some better time in without that f pain.. the enemy ..almost anything is better than that. Takes time to heal , If I could ... I surely would, wave the magic wand and rid us all ...of this PC........ Cling to what you love in your heart. Hang in there Ralphiejr64......

RalphieJr64 profile image
RalphieJr64

Thanks Lulu. I always love hearing from you. I'll let everyone know what's next in store for me. Right now it's radiation and zytiga. But if that aint doing the job, then the alternative . I'll fill everyone in tomorrow.

Ralph

j-o-h-n profile image
j-o-h-n

Hang Tough!!!!!!!!!!!!!!!

Good Luck and Good Health.

j-o-h-n Tuesday 04/24/2018 8:09 AM EDT

RalphieJr64 profile image
RalphieJr64 in reply to j-o-h-n

Thank you John!

CalBear74 profile image
CalBear74

Ralphiejr64,

I don’t hear any mention of a complementary medicine strategy that is compatible with what your medical oncologist is recommending.

I agree with the observation that this is a very aggressive cancer requiring strong response in traditional medical oncology as well as complementary medicine. My first recommendation is that you need to take eight scoops of IP6 powder in the a.m. on an empty stomach mixed in water. Repeat the dose in the evening again on an empty stomach.To understand this therapy you need to read Dr. AKM Shamsuddin’s Book which is available at Amazon. It is a 2014 text that covers great many types of cancer including prostate.

Also consider taking one daily dose of transfer point’s beta 1, 3-D Glucan, 500 mg capsules, three of them along with Resveratrol and vitamin C, 1000 mg each. In doing this you are adhering to Dr. Vaclav Vetvicka’s protocol. Please read Dr. Vetvicka textbook beta glucan: natures secret. Go to “vita with immunity.com” for physician interviews including Dr. Vetvicka on the subject of beta glucan.

CalBear74

RalphieJr64 profile image
RalphieJr64 in reply to CalBear74

Thank you for your recommendations. I will certainly look into them.

Ralph

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