Xofigo and Xtandi

Sometimes we become so awash in the details of our treatments that we edit details which may be important to others trying to make comparative decisions. The F18 Sodium Fluoride PET/CT Bone scan is especially useful in the Xofigo and Xtandi regiment because these drugs used in concert target both soft tissue and bone involvement. Consequently this scan is supposedly able to measure whole body response with a one stop shop. Thanks for the elbow poke Jerry.

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DX 1/09 Gleason 8
RRP 3/09 path upgrade to Gleason 9, 2 pos nodes
post surg PSA .6 Samarium trial 10/09
EBRT 40 treatments 3/10 PSA 2.0
MRI, bone mets 5/11
Sloan suggests HT 7/11
Sand Lake confirmed widespread mets 9/11
ADT3 10/11-8/12 PSA 0.01
F18 PET/CT 5/12 bone mets still present, increasing
6/12 2nd line HT Keto/leukine as per Charles Myers
12/4 Forteo
7'4'13 Xtandi
8/22/13 Radium 223

Amy (piy),
My husband is scheduled for his first Xofigo on Tues morning. He's been on, off and back on Xtandi since Dec 2012. His PSA was over 600, next one 12/3. AlkPhos spiked last month too. Other than Xgeva, anti-nausea, and fluid retention meds, he takes a few OTC products for constipation, Vitamin D and calcium. I think yours is the first I have seen listing Sprycel. Can you talk a little more about that related to PC or another condition? Has he had taxotere or provenge or are you still on the first lines of defense?

I hope you, Oncas, and others will follow up with their experiences with Xofigo with or without Xtandi on this thread.
Pat

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Husband dx at 48 in '94; Gleason 7; radiation, seeds, lupron, casodex, etc. HRPC 2011; PSA 80, lymph, bladder, bone mets;
chemo Feb - June '12, PSA 40;
Provenge Sept '12. PSA 917 in Dec ;bone mets on skull required brain radiation Jan '13; started xtandi Dec 12. PSA drop to 18;
PSA 88 July '13; PSA 150 Aug '13, Stroke dx, start Zytiga. PSA 280 sept '13

Pat,

I've read good things about this drug over the years. It's neat to see some of these drugs that I've read about actually get approved and become available.

Your story is very inspirational and I hope this drug hunts down and kills a whole lot of those nasty cells.

Keep us posted,
Jerry

Jim (ONCAS)

Thank you very much for yours words.

Let´s keep in contact for hopefully news on your health.

Fidelio

update - PSA down to 573 one week after Xofigo and this week's CBC is OK for RBC but platelets are rising. He is taking a short break on the Xtandi because he felt "toxic" and slept most of the day, barely moving around the house. His appetite went down even further and that's with a drug to improve appetite. He is drinking much less too, which is not good with either drug. He developed more pain in joints and ligaments, maybe muscles too, that were not responding to Oxy ER with regular oxy for breakthrough. Started morphine yesterday. Sleeping more now, could be morphine related. Developed a few palpable lymph nodes, two under arms that can be seen under his skin. Depending on how next few days go, may try to get earlier visit to oncol. Next oncol in Jan, next Xofigo Dec 27. Not sure if RO will do the Xofigo when she hears about his latest changes. He continues to be hopeful that Xofigo and Xtandi will give him more time and today's issues are but another bump in the road.

Pat

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Husband dx at 48 in '94; G7; radiation, seeds, lupron, casodex, etc.
HRPC 2011; PSA 80, lymph, bladder, bone mets;
Bladder tumors G10 Mar ‘12, Taxotere X 6; PSA 40;
Provenge Sept '12; PSA 917 Dec; started XTandi
Skull mets - brain radiation Jan '13; PSA 18 Feb ‘13
PSA 88 July '13, 150 Aug '13, Stroke dx, stop Xtandi ,start Zytiga. PSA 280 Sept '13
Restart Xtandi Nov ‘13; PSA 606; Start Xofigo 11/26/13

Hummbug,

Apparently Myers is attempting to assemble a team of top notch specialists to work with his clinic in addressing a more comprehensive total body oriented focus in his war on PCa. Because this task is so time consuming and his patient load is now numbering about 1500 he is temporarily limiting the acceptance of new advanced patients as he researches his project. If you are seeking an appointment email me at address below. I will try to help.

Jim
whistlebark@gmail.com

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DX 1/09 Gleason 8
RRP 3/09 path upgrade to Gleason 9, 2 pos nodes
post surg PSA .6 Samarium trial 10/09
EBRT 40 treatments 3/10 PSA 2.0
MRI, bone mets 5/11
Sloan suggests HT 7/11
Sand Lake confirmed widespread mets 9/11
ADT3 10/11-8/12 PSA 0.01
F18 PET/CT 5/12 bone mets still present, increasing
6/12 2nd line HT Keto/leukine as per Charles Myers
12/4 Forteo
7'4'13 Xtandi
8/22/13 Radium 223

Hope you have had a good Holiday Season and the New Year brings better results! My dad is to start Radium 223 in January, but never been on Xtandi. If you have new updates, I would like to hear how it is going!

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Dx'd 5/11 PSA 199, Metastatic/bones Stage 4, hernia surgery, removed 4'' of intestines 5/11 & 10/12 Lupron, Casodex, PSA drop to .8 in 2 mos until 1/12. Spot radiation for pains, New cancer, affect 1% of prostate cancers-fast growing lung cancer Cisplatin, etopiside chemo/8 rounds, near death-hospitalized a week, 10/12, drop Casodex, Taxotere 11/12-3/13, Zytiga 4 mos, PSA rising-Radium 223 1/14

Knowledgepower, Eric

Does your PSA continue to rise aggressively after Xtandi and Firmagon added in 2013? Are you continuing Xtandi with Xofigo and Xgeva? I'm curious about where high PSA numbers come from if the Xofigo is healing the bone mets, reducing pain, and possibly reducing number of new lesions. Mark's PSA continued to rise, up to 880 after <600 last month.

Have you had a CT with contrast that may show improvement?
Mark's scans prior to his first Xofigo in November were good although he has developed several large axillary and groin lymph nodes. Oncol thinks his PC has invaded the lymph aggressively. He has stopped the Xtandi. We expect that the RO will go with at least one more Xofigo at the end of January, pending his CBC results prior to. She has several patients in the Xofigo treatment process, and stated she watches PSA for validating effectiveness. He has not had a PET or F18Pet and we only recently read about the F18 on HW. His regular Oncol felt the PET did not give significantly better readings than CT. The CT scans have been very useful showing both visceral and bone mets and reduction in size and numbers after treatments. Only time MRI was used was to determine if the mets showing in his skull were bone or brain. Could be he was never offered PET because of medicare denials.

I know there are funds that help with costs of drugs and some treatments if you are income (not asset based) eligible. Not sure if these funds cover tests, but something to look into in Medicare is blocking you.

Pat

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Husband dx at 48 in '94; G7; radiation, seeds, lupron, casodex, etc.
HRPC 2011; PSA 80, lymph, bladder, bone mets;
Bladder tumors G10 Mar ‘12, Taxotere X 6; PSA 40;
Provenge Sept '12; PSA 917 Dec; started XTandi
Skull mets - brain radiation Jan '13; PSA 18 Feb ‘13
PSA 88 July '13, 150 Aug '13, Stroke dx, stop Xtandi ,start Zytiga. PSA 280 Sept '13
Restart Xtandi Nov ‘13; PSA 606; Start Xofigo 11/26/13

Pat:

It was not clear in my last reply but I am still on Xtandi and Firmagon as well as the Xofigo and Xgeva.
Eric N (Knowledgepower)

Hi Pat:

Thanks for your kind words.

A picture is worth a 1000 words. Here is a link to my chart of my psa with various treatments.

https://drive.google.com/file/d/0B6VXYku0aiKmUWtRUnFGT2lRZFk/edit?usp=sharing

It is frustrating to see it rise no matter what I did.

Zytiga worked for the first 8 months of 2012 and brought it down to 1.89 but then my testosterone started rising and the PSA has been on a continuous uphill slope. I am thinking that the Zytiga slope was less than the Xtandi slope and if I add Firmagon and maybe Sprycel to the Zytiga, I might have a shot.

Good luck to you and Mark.

Eric N.

Dreamer,

I'm glad he has found some relief and hope he continues to be comfortable. Thinking of both of you.

Jerry