Metastatic prostate cancer

Hi, I'm brand new to the website. My husband got his PC dx 1/2013. All 12 biopsies showed ca/Gleason 9. Had prostatectomy PSA still elevated/radiation and Lupron injections/PSA still elevated. Severe lower back pain/ Mets to bone 3 months later. He is now taking Xtandi and Lupron inj. The new wrinkle is now upper back "shock" type pain when he tries to lift his arm or arms. Sometimes experiences some numbness in upper body after. Has anyone else experienced this? We are awaiting ins. auth for an MRI of his back. The pain is right at the T9 area where bone cancer was noted. Would sure appreciate any input.

need4info

Welcome to HW, sorry you need to be here.

That doesn't sound good. Hopefully the MRI will show what's going on. Do you know if the Lupron is controlling his PSA?

Hopefully some of the G9 folks will be along soon with better info.
Andrew

Thanks so much for the comments. To Doug, I've listed more info below.... to Andrew, no the Lupron wasn't controlling the PSA, and to Susan no one discussed back pain being a side effect. The main side effect discussed was seizures and heart problems. Also wondering how long is it safe to be on such a drug. We see his medical oncologist 4/6 to discuss the Xtandi.

Diana,
_________________________________________________________

Husbands age at DX 56 01/02/13 PSA: 11.4
Biopsy: 12 of 12 cores positive, GS 9 (4+5) all 80 to 100%
T4
RP completed 3/15/13
don't have info on margins, positive on 8 of 16 lymph nodes
Post-op PSA:
4/11/13: 5.0
(Lupron Injections started)
8/13/13: 2.6
10/01/13: 14.8 Lupron alone not working(Started on Xtandi & Xgeva)
Back pain started/Bone scan 10/08/13 mets both shoulders, Right sacrum, iliac, L5
11/26/13: 6.0
12/1/13: <.1
CT mets: L4, L3 and T9
PSA currently: <.4

So sorry you as well need to be here..But . There is a wealth of info that is shared and its right at your fingertips. The spinal spot may require just a spot dosage of radiation. Dave has had to have 2 such treatments. What I do not see on your list of meds is a bone strengthener like Xgeva. If it has indeed targeted bone that may be benificial.
We as well are stage 4 with wide spead bone mets as well as lymph node involment. If you want to read about Dave our story is under Sue Saddened Wife. I wish you and your hubby all the best of luck!
Sue🌞

Diana - I know that back pain from Xtandi isn't often discussed but it happens. My husband described the pain as an ice pick right below his shoulder blades. Worth a mention to your doc to see what he says.

"Adverse Reactions The most common adverse reactions (≥ 10%) reported from the two combined clinical trials that occurred more commonly (≥ 2% over placebo) in the XTANDI-treated patients were asthenia/fatigue, back pain, decreased appetite, constipation, arthralgia, diarrhea, hot flush, upper respiratory tract infection, peripheral edema, dyspnea, musculoskeletal pain, weight decreased, headache, hypertension, and dizziness/vertigo."

All the best,
Susan

2005 Diagnosed at 63 yo Gleason 4+3
2006 LRP First PSA 11.8 Stage IV Start Lupron
2010-2014 Casodex, Provenge, Nilandron, Zytiga, Orchiectomy, Xtandi.
PSA cont rise. Spot on spine & enlarged lymph nodes.
2014 Xgeva & Taxotare
10/31/2014 Last Taxotare due to SE’s PSA was 14.82 now 1.3
2/27/15 PSA 10.48
3/20/15 PSA 13.68 Multiple lesions found in liver
3/27/15 Start Jevtana w prednisone Neulasta 24 hrs after chemo

I'm also brand new to this forum. I was diagnosed in October, 2012 with an extremely high PSA of 744. Gleason 8, 12 out of 12 biopsy samples with an aggressive form of cancer.
Subsequent scans showed a very large prostate, invading the bladder, partially blocking bladder outlet and both ureters, and up against posterior wall of rectum.

Urologist told me "incurable but treatable.

Started treatment with Firmagon and Xgeva injections along with daily bicalutamide. PSA down to 15
in about three months. I tried Lupron for a few months, but it didn't control my PSA as well as the Firmagon, so returned to Firmagon and also added Avodart.

June 2012 back pain increased. Ten radiation treatments to sacrum, and then put on palliative care, with morphine for pain and hydromorphone (Dilaudid) for breakthrough pain. Scans show prostate shrank, and lymph glands also shrank. Bone mets stable.
and put on Xtandi, while keeping the Firmagon and Xgeva injections. Bicalutamide stopped. PSA was 5.85 Nov. PSA was down to all-time low of o.90 then began a slow increase again; Dec 0.96 Jan 2015 1.07, Feb. 1.3 and then March 1.25

Testosterone was vacillating during this period, up to 50, and the last T-level was 25.1

I'm experiencing a lot of side effects, the worst of which is extreme fatigue, followed by mood swings, memory loss, hot flashes, pain and aches in bone, joints and muscles---especially the lower back, weakness and loss of balance and pain necessitate the use of forearm crutches (I can't use a walker), and the depressive episodes are also overwhelming at times. I've also developed full osteoporosis from the testosterone deprivation.

I now also take Ativan for anxiety, mirtazapine for sleep, Ritalin for cancer-related fatigue, Cialis for urination, metaproterenol for asthma,

At times I feel so terribly ill that I feel like I'm dying, pain levels fluctuate, and the fatigue is really disabling at times. Any suggestions as to how to deal with the fatigue and depression are very welcome.

CERICWIN