Posted 2/21/2017 3:24 PM (GMT -7)
Hi I'm new here & appreciate learning about this group from celebrate life. I guess I will just start by sharing about our situation. It is a bit long & detailed, but I think it will help if I can just put it out there. Thank you for you patience.:
My husband, Norb, is 83. We've had a wonderful, healthy, adventure-fulled life together and didn't think much about it when he began having numbness in his toes in 2001. 5 years later, the numbness had progressed up his legs. He was tripping & stumbling frequently, and finally diagnosed with a very rare variant of an already rare auto-immune disease called CIDP (chronic, inflammatory, demyelinating polyneuropathy). His variant is antiMAG IgM. This is a slowly developing disease in which the body's own immune cells that attack sensory & motor nerves in the feet, legs, hands, and arms. By then, he also was diagnosed with mild, type 2 diabetes. He started using a cane to keep his balance.
By 2006, he had 'foot-drop' and a lack of sensation of balance. He began using a rollator-walker. By 2007, he was simply unable to control his legs enough to walk, nor did he have the endurance by take more than a few steps, so he moved on to use of a power wheelchair. I think what I miss most starting that year, was the inability to go for walks together holding hands.
When we moved to the Seattle area in 2009, the UW neurologist who took over his case said he of CIDP he had ever seen, but that was not all that was wrong with him.
Between 2009 and 2011, Norb was in and out of the hospital several times. He developed atrial fibrillation & flutter in his heart. Eventually he had a cardioversion, then a stent & was placed on long term blood thinners (Pradaxa), and finally a pacemaker. Other than that, all of his blood labs, including PSA, looked healthy.
Beginning in 2012, he had bouts of sudden pain in his bladder-pelvis area. We wondered if it could be related to his nerve problems. He was sent to see a urologist who thought it was just an irritable bladder, but even with medication, the pain worsened. He was unable to pee, so urology checked him out again and decided his prostate was enlarged. (PSA was normal). They prescribed urinary catheters along with the anti-spasm medication.
In 2013, his pain continued to increase and he was referred back to neurology to see if his problem might be nerve related. He had a pelvic MRI to see if he had a chronic cauda equina syndrome but results were unclear.
After an ER visit in 2014 due to excruciating pain, he was diagnosed as having chronic proctalgia fugax, a severe pain caused by contraction of the levator ani muscle. His doctor put him on vicodin for main. While they helped him cope with the severity of the pain, the didn't stop it or reduce its frequency which occurred almost daily. Twice more he saw urologists because of bladder infections & worsening pain.
Finally, in 2015, he was sent to a neuro-urology specialist to see if anything could be done. In a digital-rectal exam, she discovered blood. She was the only urologist in 4 years of urology appointments to perform a digital exam.
He was immediately referred for a biopsy and PSA. From normal the previous year, his PSA was over 20. The biopsy came back positive for aggressive prostate cancer with a Gleason of 4+5.
A bone scan showed metastatic lesions in his neck, lower back, sacrum, pelvis, & 2 ribs.
A CT/contrast scan showed mets in pelvic lymph node and some in his chest. He had 5 lesions in his lungs and one in his liver that was suspicious.
In October 2015, he was given Casodex and month later started Lupron which lowered his PSA.
(20.59 to 01.33 over nine months).
In August 2016, his PSA began to rise and Xtandi (enzalutamide) was added to the Lupron.
Since November 2016, his PSA has been below 1.0 and was at its lowest in January 2017 at 0.07.
It hasn't all been great. Since beginning the Xtandi, he has more problems controlling his power chair, holding spoons & cups, & getting food to his mouth. He has had several toileting accidents due to lack of awareness that he needs to stool. He's wobbly. Weakness in his legs makes transferring more difficult. Nausea has increased.
He continues now on daily low doses of long-acting morphine which he sometimes skips and regrets. Clearly those 3 years of worsening pain were caused by prostate cancer. Confusingly, his PSA never did rise until sometimes nine months prior to diagnosis, then it increased rapidly.
By then his disease had metastasized all over his body.
I'm so grateful to the neurourologist who finally bothered to check his prostate. I suppose at (then) 82, no one thought it would matter; everyone figured if he had prostate cancer, he'd still die of something else. What frustrates me is that not one urologist, until the last, bothered to consider that his neurological disease & prostate cancer combined likely cause his years of agony.
It is difficult to sit by helpless and watch a person you love suffer so terribly. I'm glad those days are over. I'm glad he gets the pain medication he needs.
Our lives are quiet these days. He sleeps a great deal. Fatigue has been a problem for years, well before the cancer. He has his mind, for the most part. We enjoy conversations about books or movies, politics & grandkids. I'm not as distressed as I was initially. We've both come to terms that this is not a disease with a cure.
I sometimes still think about whats to come. What will it look like? Will I recognize problems when they happen? Don't know. We'll see.
That's it. Thanks
Norb age 82 at diagnosis 9/15
Biopsy - Adenocarcinoma 10/15 bone scan & CT w/contrast
Gleason - 4 + 5
Metastases - 22 wide-spread (bones-9, lymph-6, lung-5, liver-2)
9/15 - 20.59 started Casodex, then switched to Lupron
2/16 - 01.39
5/16 - 01.33
8/16 - 02.07 added Xtandi to Lupron
10/16 - 01.98
11/16 - 00.20
1/17 - 00.07