Participating in a Phase 2 trial since June 2021 that includes a maintenance phase of 200mg of Nariparib orally daily and once monthly intravenous injection 30mg/ml of Cetrelimab. The Trial initially included six cycles (Induction Phase) of Cabazitaxel/Carboplatin/Cetrelimab.
Throughout this timeframe my PSA has risen from 4.4 in May 2021 to now 14.65 as of yesterday. My CEA has also elevated from 8.1 in December 2021 to 13.9 as of yesterday.
My MO continues to state that I should not pay attention to these markers, that the CT and Full Body Bone Scans will dictate whether or not the trial meds are helping or not. As one might imagine however, it is extremely difficult to ignore these markers given the velocity of increase over such a relatively short period of time.
Any one have any suggestions for discussion with my MO on continuing in the trial or exploring appropriate alternatives ?
Written by
kklott01
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I agree with your MO. PSA increases when cancer cells die, and an increase may be a good thing. The significance of CEA while taking this therapy is unknown - that's why they are measuring it. The only sure indicator is whether your metastases are shrinking, stable, or growing.
Thank you for the feedback. I was not aware that PSA increases when cancer cells die off.
I have a CT and Full Body Bone scan at the end of this month, so I will obtain new tumor metrics and learn if Mets are shrinking, stable or growing. Thanks again!!
Lortadine is supposed to help prevent cancer from scavenging the die off. I am with you and would be concerned, that is not an insignificant rise. Suggest you get second opinion from a top cancer Institute like Mayo, MD Anderson, memorial Sloan Kettering Cancer Center, etc. Another approach many have added Jane Mclelland's protocols for some significant success, and then there's Joe Tippens protocol. I haven't done Janes but if I get to place where my psa is rising again, or new metastasis, I would follow the best of MO's opinions and consider supplementing with above alternatives that might synergize with Standard of Care. If your clinical trial doesn't improve...what have you to loose?!!! Prayers for your success.
My Sister has very poor prognosis RCC with highly aggressive rhabdoid features. She went with JTP and her MO tells her, whatever you are doing, keep doing it because it is working!SDr's can not prescribed off label so many would rather not know when patient uses alternatives,. Dr's should watch all your scans and bloodwork for signs of potential adverse events so they can adjust drugs etc.. She had kidney removes over a year ago and Dr. Said he had expected recurrence in weeks, not moths! Clear so far. Pray for His all knowing wisdom and will to be done! Commit yourself to him and do your best!
This is the third trial that I am participating in through MD Anderson since October 2018.
My MO spent time at Memorial Sloan Kettering prior to relocating to the Houston area.
Overall, I feel that I have been in good hands to date, however the interactions with my team for this trial have been primarily with the nurse practitioner instead of with my MO.
Just not what I expected nor experienced in prior trials. I don't want to feel insignificant and as just another medical record number...trials are difficult enough as they are, especially when you layer on the monthly travel!
I moved mid trial, first MO of my clinical was wonderful! She really cared! . I am greatful to still be on the trial in a new location but what a difference in caring attention! Almost feel like just a number at the new location. Greatful they accepted me though because trial payments are front end loaded, and don't pay nearly as well later in the trial. The MO previous to my favorite MO explained how it worked and that he wouldn't take on a patient half way through a trial because he'd loose on him. So, we must be greatful for our opportunities to live QOL a bit longer, even if they are not perfect!
Prayers and best wishes in your treatment results!
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