Hello All! I am active on other sites/forums but in need of some help/advice. Hubby dx at 44 yrs in April of 2017. Extensive mets to bones and lymph nodes. Diagnosed based on enlarged cervical lymph node above the clavicle on the left side of his neck. Completed 6 cycles of , takes daily casodex with lupron injections. PSA was .14 in Feb up to .28 in May. Alk Phos up to 135. Enlarged mass visible on left side of neck (same spot as original biopsy site). Scans from May show bones mets stable no new lymph node involvement but most likely a conglomerate of necrotic cervical lymph nodes measuring 4.9cm. This mass continues to grow. An excisional bx ordered for Aug 7th. Has anyone been through something similar? I am assuming we have active cancer cells. He had some neuroendocrine markers in his original bx but there were few compared to prostate cells. He has had genomic testing done. Carries BRCA2 (somatic not germline) negative for PD-L1 expression. Could enlarged cervical lymph node cause increased PSA and ALK Phos? Thank you for reading my long post!
Advanced Metastatic PC-Cervical Lymph... - Advanced Prostate...
Thank you Nala. It is actually a group of nodes that have formed together (sorry, wasn’t clear in my original post) and this mass is growing bigger. I’m sure it is touching his clavicle. It’s larger than the original 4.9cm from the scans in May. It is growing rapidly which has me concerned waiting until August. Although his PSA has doubled it is still a low level PSA which has us concerned there may be something else going on. Yes, we have discussed the possibility of Lynparza as a tx option. We are with the Cleveland Clinic Taussig Cancer Center and we are in great hands. Very thankful for that. Thank you for sharing your knowledge. It is much appreciated!
Thank you NP. He had a bone scan and CT scan completed in May. AST and ALT are WNL. GGT not measured. To put things into perspective ALP (7/18-84, 8/18-64,11/18-79, 2/19-87, 5/19-135H). PSA (5/18-.17, 8/18-.14, 11/18-.14, 2/19-.14, 5/19-.28). It was in Feb of 2019 that Mike first noticed a slight swelling of lymph node in the neck (the exact same area the cancer was originally discovered). By the time we returned in May swelling increased drastically as well increased ALP and PSA. They are removing the mass in Aug. We are meeting with the specialist in a couple of weeks. It is an unusual presentation as there are not many documented cases with cervical lymph node involvement. The nodes formed together and some are necrotic. He is becoming castration resistant and we are sure that tx will change. I am more concerned about what else may be going on. We will know more in August. Thank you again for your reply.
Wanted to provide an update as you all were kind enough to reply to my original post. They were able to remove 90% of the mass, which grew from 4.9cm in May to 9cm in August. Pathology report reveals Neuroendocrine differentiation diffusely positive for synaptophysin and chromogranin with immunostains, for PSA and AR, negative. Now we have another beast to battle. There is some discussion about radiation to address the remaining mass left behind followed by combo chemo (carbo/cabazitaxel). Concerned radiation will be ineffective against neuroendocrine and wondering if systemic approach with chemo better to start with. More scans ordered bf next appointment. Genomic testing will be done with new tumor. Old tumor showed negative PD-L1 expression and Mike was found to have the BRCA2 gene (PARP inhibitor mentioned as tx option at the time). A lot that needs to be determined quickly. Thank you all for your kind words of support. 💙Nikki
I think you should do the combination--radiation followed by chemo as there is some synergy using combo therapy together--see below:
There are more options now for neuroendocrine--decitabine
Now, in trials with enzalutamide as combo therapy...
RRx-001 is in trials for neuroendocrine--Phase 3.... You could also run a prolactin level and see if cabergoline may be an answer....Best of luck.....
To radiate the remaining tumor mass I would choose Cyberknife or SBRT radiation. This can radiate very small areas with high doses in three to five session only.
If the recommendation was to use a PARP inhibitor I do not understand why this has not been done. So try that e.g. Olaparib. Otherwise use carboplatin for chemo.