BAT failed 5/15/19 PSA 12.2; Active mets on C5 spine plus other places.
Started Docetaxel Carboplatin combo 5/22/19. PSA down to .8 Aug 2019; Chemo stopped after 4 infusions due to bad reactions and terrible skin rash. 9/19 - CT scan shows new met in lungs. Start Xtandi 10/19 - did not qualify for the Vision Trial, no PSMA uptake. PSA rising in December 2019, so started on Lynparza 12/20/19. Currently very fatigued, still pain in neck/shoulder from C5-C6 met. Lack of range of motion on my left arm, impossible to raise past my waist.
Going today to get a blood test to make sure I'm not getting anemic - Physical Therapy appointment on Tuesday to start that for my arm. Just so very tired all the time.
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Alvin735
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Looks like there is neuroendocrine differentiation considering the progression with low PSA, poor PSMA expression, short response time on Zytiga, and visceral mets. Looks like his doctor is also aware of that since they put him on Carboplatin already.
I would try to go on lower dose of chemo on a weekly or 2 weeks basis to see if it could tolerated that way. I do think chemotherapy is the best treatment option from what you have said.
Lynparza is a double-edged sword - it works very well for guys who are BRCA2+ but it can have the kind of side effects you are experiencing. Can you get SBRT to your C5-6 met? Recent evidence seems to show that it is possible to get pain control while minimizing the risk of spinal compression:
Did labs and met with my onocologist PA today. PSA has risen to 7 and white blood count is very, very low. So, decision was made to stop the Lynparza for a week and see what happens with the WBC. Appointment with my Onocologist on the 15th to review. Starting PT tomorrow for my neck, shoulder, back. This stuff is getting really old, I think I have aged 15 years in the last month or so Thanks for the responses....
Alvin, my hope is you have a support group around you to deal with what your going through (family). We are here for you and if you ever need to talk to someone, there’s a lot of people here on this forum! Best wishes to you!!!
Thanks. I have absolute trust in my PCa doctor, Dr. Sartor at Tulane. He's kept me alive and kicking this long, just hope the trend can continue. And continue with a bit better "quality of life" ....
Sorry you are going through this struggle. I hope you have good support around you too. It’s important to acknowledge the personal toll of treatment. Families are so focused on loved ones staying alive they often neglect to acknowledge what people must go through in order to stay alive.
I hope you find a lower impact treatment that works!
Wow ... I'm really happy to read this. Maybe another bullet that maybe available in the future. I really don't know anything about NEPC, but guess I will learn (especially if it proves that I have it)
You've been through a lot, some same as me, some more than me. Don't have good advice, except to say thank you for posting, admire your strength and persistence, wish you find hope, wish you the best.
Thanks, just read your "welcome" ... wishing you well too! And all of the different attempts to control this beast has about killed my short term memory. I bring my wife to all my appointments so she can remind me of what was said ... and remind me of things to tell the doctor.
Yeah, I write questions in a notebook and write the answers and any thing else new (such as last visit I found my doctor was born in the Year of the Snake!)
I'm so sorry to hear what you're going through. It sounds similar to my husband. I may have some helpful info.
When you were on Zytiga, I assume you were taking Prednisone with it as the steroid. Did you try switching steroids to dexamethasone? That can keep the Zytiga going. (I think the final conclusion on that just came out last summer - don't know if our Dr heard of it, so I sent him the article, which I think I posted here) Worked for my husband. Also, given your pain issues, I think you can start with a larger dose until things get under control, as the Dr. did for my husband. While I was researching the steroid switch, I came across a research article saying larger doses of dexamethasone alone can work well for CRPC.
fwiw, After the Doxataxel failed for my husband, he had to have 10 rounds of radiation to his lower spine . Dr. then found some mets in his liver, so immediately started him on Carboplatin/Jevtana chemo mix - at first they scheduled him to start same day as last, 10th radiation, then realized that would be too dangerous, so started the very next day. That caused his blood numbers to plummet! VERY scary!! So no more chemo allowed!!. Dr. then started Lynparza as a Hail Mary (husband had somatic BRCA gene) ......that got the mets out of his liver (Dr was surprised!!), but his PSA kept rising, and his blood numbers were still very low from Lynparza, so he lowered the Lynparza to 300mg am, 150 pm, which brought his blood numbers up enough to show he could tolerate it. (in edit - Dr. may have stopped Lynpara for a dfew days before lowering dose, to get blood numbers back up) To tackle the rising PSA (it went up to the mid 30's), the Dr. then added Zytiga with Prednisone. It was a miracle!! Kept PSA in the low/mid 3's while this combo worked for about 1-1/2 yrs until alk phos and PSA rose a bit last July.
Last July Dr. immediately stopped the Lynparza in preparation for Xofigo (because both are hard on bone marrow), and stopped Prednisone and switched to Dexamethasone. But He started My husband on 4mg Dexamethasone, not the usual 1mg. He then slowly tapered the Dexamethasone down to 1 mg over about 4 months. My husband also had to take larger doses of steroids for CT scans, and those larger doses always helped with the odd pain - similar to what you're describing.
fwiw - My husband has had 4 Xofigo injecions, starting in early Sept.. The first 2 worked well, per blood test results, the 3rd was probably also doing the trick in bone mets, but alk phos went up a bit and PSA went up a bit (although I read Xofigo can cause flares), then 2 weeks after his 4th Xofigo he suddenly became very weak, his blood counts crashed (hemoglobin at 6.1) and he started requiring RBC transfusions. This is where we're at now. Don't yet know for sure if we can blame it on cancer in the marrow or the xofigo. Time will tell. Dr giving the injection told us it's not unusual for patients to require transfusions to get through all 6 treatments - we were NOT expecting bone marrow failure! So if you do Xofigo, be very careful.
I hope at least some of this can help you! NEVER give up!!
Thank you for taking the time of writing all this. I wish you and your husband well. Yes, I have had the steriod switched to Dex while on Zytiga, didn't help ... still currently and probably will always be on Dex. The higher doses were given to help with the pain, but it also didn't help. I've been off Lynparza now for a week, so will be meeting with my doctor tomorrow to find out what the next step is. Hopefully it is just lowering the Lynparza ... but we will see. Again, thank you very much.
Prayers for encouraging information from your doctor tomorrow. Have you have any recent genetic testing? If not, you may find something new. Also, 2 different tests can bring different results. I'm currently trying to convince our dr to run another test. :
One Patient, Two Cancer DNA Tests, Two Different Results
Well, Dr. Sartor told me to stop taking Lynparza for a week because my white blood cell count was so low. Went to see him again today and WBC is back to normal. Restarted Lynparza, but at 200 mg in the morning and 200 again at night (so a reduced amount). Will recheck in two weeks. Neurologist appointment next week to see what else can be done about the pain in my neck, shoulder and arm ... physical therapy hasn't really done much on my range of motion on my arm.
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Thanks for the responses....
Such a shock to get this diagnosis 
Slowly Rising PSA - Getting Nervous
Getting Slightly Concerned
Help with doctors and getting to a plan
