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Disappearing Bone Mets - Dr. Myers

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Posted 5/11/2013 12:15 PM (GMT 0)
Some of you may have already seen this. I just saw it yesterday on Dr. Snuffy Myers weekly video and thought it would be interesting to those who have not seen it. This was one person but is again the result of combination drugs (Zytiga and Sprycel) for bone mets. Zytiga had to be reduced and one person has asked to what level.




askdrmyers.wordpress.com/2013/05/10/disappearing-bone-mets/

Post Edited By Moderator (PeterDisAbelard) : 5/12/2013 6:52:46 AM (GMT-6)

Posted 5/11/2013 1:27 PM (GMT 0)
Thanks.

I had seen the article yesterday, But on first reading I had Sprecel confused with Provenge (Sipuleucel).

http://www.businesswire.com/news/home/20090514005876/en/SPRYCEL%C2%AE-Dasatinib-Shows-Potential-Treatment-Prostate-Cancer

http://en.wikipedia.org/wiki/Sipuleucel-T a/k/a Provenge.

Even though I am not there yet, I try to read as much as I can about drugs I may be needing down the road.

For the moment just trying to maximize the positive aspects of Lupron for 18-24 months while avoiding as many of the adverse SE's as possible. Not on Casodex or Avodart yet, and next addition depending on Monday's bone density scan result will likely be Xgeva™ (denosumab).

Since I do have bone mets, I found the article very intriguing and a source of future hope.
Posted 5/11/2013 1:43 PM (GMT 0)
The top link above may be broken. This is another link:
askdrmyers.wordpress.com/

Post Edited (robertC) : 5/11/2013 8:31:03 AM (GMT-6)

Posted 5/11/2013 1:57 PM (GMT 0)
A more specific link to the video (note you can also page down to prior videos such as one last week on active surveillance versus RP) or virtually any PCa topic if you are persistent enough

/askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonvqzIZKXonjHpfsX%2F7usrWLHr08Yy0EZ5VunJEUWy2YEDT9Q%2FcOedCQkZHblFnVkKS62yVq4Nq6IM
Posted 5/12/2013 3:01 AM (GMT 0)
My husband is the patient Dr. Myers talked about in that video. The original poster mentioned someone asking about the zytiga needing to be reduced...I think Dr. Myers just meant the drugs were dosed at levels different than he might have used for someone who didn't need this particular combination. We haven't had to experiment with various dosages -- the first one worked, with minimal side effects. And I believe the zytiga dosage is pretty typical -- 4 pills of 250 mg each, once a day on an empty stomach.

Some of you may remember me posting about a doctor at Sand Lake telling us the scans looked bad but declining to elaborate further, leading to a month of anxiety. As I'd been trying to convince my husband and myself (more hoping than being confident it was true), it was one of those "everything is relative" things. The doctor at Sand Lake saw metastasized cancer and thought "that's awful." Given where we started, with innumerable mets in both bones and lymph nodes, what looked bad to him (cancer in lymph nodes) was almost miraculously good news for us -- all the bone mets are gone! So it's been a very good week here :)

BTW for the interested -- we'd seen two other oncologists before Myers, including one other "big name" specialist in aggressive PCa. The two others had recommended only casodex + firmagon. Myers has him on zytiga and Lupron and sprycel as mentioned in the video, along with Avodart, estrogen patches and a number of supplements. I absolutely believe Dr. Myers has dramatically changed our lives -- I believe my husband will get more and better years and my kids will get more years of normal childhood. Count me as a believer in pulling out the big guns early in any fight with aggressive PCa.
Posted 5/12/2013 7:36 PM (GMT 0)
That's outstanding Infohound.

Congratulations to you and your husband.
Posted 5/13/2013 10:11 AM (GMT 0)
Infohound, what an inspiring story, and remarkable enough for Dr.Myers to feature it in his video blog! Dr.Myers is the best out there, you are in such good hands. May your family enjoy many, many years of health and happiness!!
Posted 5/13/2013 10:31 AM (GMT 0)
Infohound,

Thanks for bringing your story to the forefront. I could not be happier for you, your husband and your family. I'll be seeing Dr. Myers for my fourth visit in a few weeks. He now has me on a Ketoconazole/Leukine/Estrogen/Forteo regiment as a second line therapy to address my extensive bone mets. So far as per my last imaging the treatment response has been very good. Given the similarities in our histories however I am curious to see if he will choose this alternate path.
Very best of luck and keep us posted.

Jim
Posted 5/13/2013 10:37 AM (GMT 0)
Infohound, may I ask what the Sprycel dosage is? I found the story absolutely amazing, and if I must, sometimes in the future, if my dad is at those crossroads, I would like to mention this to his oncologist, perhaps he MAY listen. However, I suspect that the cost may be an issue. From what I have seen, it ain´t a cheap drug, and the patent is running out in the far future - 2020!
Posted 5/13/2013 12:06 PM (GMT 0)
Infohound,

Thanks for sharing. So happy for you and your husband. If you have time (give me your opinion of my case), can you read my story as I feel somewhat along even thought my wife supports me. She thinks I spend too much time reading on here and other sites, as I ONLY want to learn as much as I can about my case.

I'm so happy for you and your husband.

Thank you very much.

Dave in Bartlett, TN

Post Edited (grandpaof4) : 5/18/2013 5:39:21 AM (GMT-6)

Posted 5/13/2013 12:30 PM (GMT 0)
Infohound,

Thanks for sharing. So happy for you and your husband. If you have time (could you please give me your opinion of my case), as of late, I'm feeling somewhat along even though my wife loves and supports me as well as a lot of people care and are praying for me. She thinks I spend too much time reading on here and other sites (only reading the negative stories), as I ONLY want to learn as much as I can about my case and what is out there for help me in the future.

I'm so happy for you and your husband.

Thank you very much. Feel free to email me. [email protected]

Dave in Bartlett, TN
Posted 5/13/2013 7:16 PM (GMT 0)
Journal article testing of Sprycel + Chloroquine (malaria drug), tested on various types of PCa's (a number of Lncap PCa cell lines, into 'nude' mice). Results were astounding and all PCa's had drastic results in lowered populations or in effect wiped-out. Amazing results, what we need is a person to do this protocol in off label useage and report back. You could get a script (perhaps) and try it in off label useage. If I had the money I would try it, as insurance won't cover it most likely, Sprycel is expensive, but Chloroquine is cheap-cheap. You could get good results in short term useage. In these lab tests in mice results were measurable (day and night too) within 24 hours or less.

Also, AstraZeneca had a clinical trial on a little bit similar concept combo drugs....not sure what their findings are as of yet.
Posted 5/13/2013 10:15 PM (GMT 0)
Infohound,

:-)   Good for you guys for seeking out one of the best PC medical oncologists.  Amazing response to this combination of drugs.

JL

 

Posted 5/21/2013 3:50 AM (GMT 0)
Infohound. I have read many blogs and found my PSA and diagnosis are similar, except not spread to lymph nodes. I am also 57 years old,curiuos about your current PSA level, and what Hospitial you are being treated at.
Posted 5/21/2013 3:40 PM (GMT 0)
I just looked Sprycel. With a coupon at WalMart you can get a 30 day supply for $9,069.
Posted 5/21/2013 4:02 PM (GMT 0)
Infohound
That is awesome to read....keep us updated.
Posted 9/23/2013 1:32 PM (GMT 0)
Infohound, awesome. I am really happy for your family.

Do you have an update for us?
Posted 9/23/2013 3:09 PM (GMT 0)
Fabulous. All the best to you and hubby.
Posted 9/23/2013 3:26 PM (GMT 0)
Very interesting video and to know the patient was one of our own here in these forums really gives it credence. Congratulations Infohound on the great success you two have seen. May the future be bright indeed for you and your husband.

My Onc has now brought the subject up with my wife and I this last weeks appointment. Its beginning to be obvious to me that Lupron by itself is no longer holding the line. I think we are heading into that same territory you have gone and its encouraging us.
Posted 5/25/2014 7:56 PM (GMT 0)
I am pleased to report that like INfohond, my mets have resolved.

Hope you all are having a relaxing Memorial Day weekend.

Friday I receied a copy of whole body scan 5-21-14 vis a vis prior one from 07-31-13. It sounded very favorable:

"the previoussly demonstrated metastatic disease to the thoracic spine and sacral ala has resolved.

Conclusion: Normal total body bone scinitigram with resolution of the metastatic disease when compared to 7-31-13 study."

I discussed with rad onco Tim Brant whose take was that probably not all the mets have flushed but what remains is too small to show up on std whole body scan.

This was strictly with Lupron since 3-28-13 (Oligometastatic) and Xgeva, no other treatments, no surgery, no radiation nor chemo

LupronJim
Posted 5/25/2014 8:32 PM (GMT 0)
Hey Jim,

That is fantastic. Great news!! Where in FL and what type whole body scan did you have? Now have a great Memorial Day weekend.

Best,

Robert
Posted 5/25/2014 9:33 PM (GMT 0)
Jim---outstanding!!!!!!

So happy to hear that...
Posted 5/26/2014 12:40 AM (GMT 0)
Great news, you are now a Poster Boy for Lupron!

Houseboy
Posted 5/26/2014 12:45 AM (GMT 0)
Lupron Jim,

That is the best news...congratulations to you and your doctors.

Have a great Memorial Day.

Lisa
Posted 5/26/2014 2:04 AM (GMT 0)
Great news, and congratulations to all you men fighting the very aggressive cancers.

David
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