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G-9 2yrs out, things getting out of control Again now what?

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Posted 5/21/2015 1:24 PM (GMT 0)
Husband DX 2yrs ago. He has had pretty good success in keeping the Cancer from getting the best of him. See signature below. Side effects and symptoms have been pretty much controlled and/or tolerated. PSA has been rising. Onc. Said don't worry too much about PSA rise. Has referred him to a couple Clinical Trials. rejected by one due to qualifications. But last few weeks intermittent aggravating back pain. This past week severe pain to tears especially if standing. E/R Tuesday PM. MRI Spine- 2 lesions on Spine, T-5,L4, PX Oxycoddone, send us home to wait on Onc. For further tests.
What should we be asking for? Does he need PET, prob. CT's to see what soft tissues are doing.
Just not sure if he should keep taking this combo any longer. Looks as If it's not doing the trick.
Chemo again? Same or different. Can't stand seeing him in pain. Can't get Drs office to call back. So frustrating.
Posted 5/21/2015 1:39 PM (GMT 0)
Barb1, sorry to hear about the progression. How frustrating. G9 can be an unpredictable, untamable beast

The signature didn't show up, so I copied it from your April 29 post just for other's reference here:
==================================================
56yrs. DX, July13. W/PSA-48.9, G-9 12X12positive, 10=5+4,4+5,4+4,extracapsular extension, involvement of seminal vesicles,invaded base of urinary bladde, several lymph nodes involved. T4N3M0--
Degeralax
PSA, 8/13=27, 10/13=7, 11/13=11,12/13=17, Casodex 12/10/13 PSA 27 ,1/14= 34, Zytiga/Prednisone. 2/14PSA 32, began chemo. taxotere/Carboplatin -3/14Psa14.4 (6rounds last 6/14) PSA 6/14 .72
==================================================

Good luck with the next steps, as complicated as this may become.

Jerry
Posted 5/21/2015 2:34 PM (GMT 0)
Barb, if you edit your original post, even if you do not change anything, you will get given a check box to add your signature.

To add it avery time you post, there is an edit to your HW profile required.

I see you are in Texas.

Is MD Anderson your medical oncologist team?

Post Edited (LupronJim) : 5/21/2015 12:54:15 PM (GMT-6)

Posted 5/21/2015 2:50 PM (GMT 0)
Lots of men seem to get good relief for their painful metastases with spot radiation. That would be a side issue that doesn't particularly bear on his meds. Something else to ask about.
Posted 5/21/2015 4:10 PM (GMT 0)
That taxotere/carboplatin combo seemed to work very well last time - perhaps re-do? I agree with PDA that some spot zaps of radiation to his spinal mets (depending on where they are) might give him a lot of pain relief. Perhaps Xofigo? Perhaps estrogen patches? Perhaps the clinical trial of VT-464? Perhaps immunotherapy? Lots of options to discuss with his oncologist.

- Allen
Posted 5/21/2015 6:31 PM (GMT 0)
Thank you Jerry, I did go back and add the signature.
Lupron Jim, Yes, MDA is where his Oncologist is. Kinda frustrated right now. Drove 4 hrs. To E/R at MDA Tues. got out of there about 10:00pm. They did MRI of Spine sent us home(hotel) with Oxycodone. Said scans will be read in morning, but did rule out spinal compression. E/R Dr. Called the next morning to say the two "lesions" showed up. Would need further tests. She would send on to Onc. And to follow up with him. We decided to make the 4hr. Drive back home as we did not hear from any one. We have left 3 messages, w Nurse, PA, scheduler(you only get voice mails) no one has called us back. Very frustrating. Not used to seeing him in pain like this.
Last appt. a week ago when PSA had risen. Onc. Discussed maybe reinstating Tax./Carbo. Since he did respond even though it was only 3mo. Before PSA started to rise. It has been a yr. since last treatment.
He also mentioned he may try to get him into trial with KPT-300(Selinexor). But, this was before this severe pain started. My thought is should he continue, Lupron, Xtandi AND Zytiga if does not seem to be doing the job. or is it? Could things be worse with out them? Right now, just want to get to next treatment what ever it would be to STOP the progression and pain. What ever it will be. He was previously scheduled for his 3mo. cT scans for 6/3. But, hoping we can get going sooner since this horrible pain came on so sudden.
Posted 5/22/2015 4:46 AM (GMT 0)
Hi Barb
Hopefully, it's not out of control. For now, I hope you can be a squeaky wheel and keep trying until you get the info and answers you need from the docs. And for pain it's good that you have oxycodone. If it causes nausea, hydrocodone could be effective too. I don't know if ice is usually recommended but I still use ice packs on my bony met areas (stable now but still rage with pain) when I can't get relief from meds. It can put out the fire for a while.
As Peter & TA mentioned, radiation on the met spots could be an option for you. I have friends that have received spot radiation and even chryotherapy on spine mets with good success.
Fight on & take care,
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