My dad has been in the ICU the past 2 days. Things began to decline on Thursday. While he was at City of hope getting his weekly Labs for Lu-177-PSMA Trial. His Hemoglobin dropped to 7.5 and he required 2 Units of blood. This is a known side effect of the Lu177 especially with bone/ marrow metastasis. Plus he has some bleeding through his urine catheter that added to the blood loss. He developed blood clots that blocked his catheter and soon couldn’t urinate. Prior to this his renal function was great. After 10 hours of waiting and multiple attempts to remove clots, he was taken to OR for cystoscope. He had many bladder clots that required anothe r2 units of blood transfusion to replace loss. Apparently he became significant acidotic and they had to stop surgery and get him to ICU. He is ok post-op but his kidneys have taken a hard hit, he has fluid buildup in lungs, and his platelets are dropping by the hour. He is significantly thrombocytopenic with 50k platelets —- (92k) yesterday. And he converted into rapid atrial fibrillation for 7-8 hours today.
With all these issues, I pray that he pulls through. He is due for 2nd treatment Friday 19th. It doesn’t look like he will make it this Friday but i hope his kidneys will reverse damage and he will gain strength enough to postpone till following Friday. Please keep him in all your prayers, we really could tell treatment is working his palpable lymph nodes have all gotten much smaller. I just hope he can get back on his feet.
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Daddysdaughter
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I am so sorry to hear he is having these difficulties and hope and pray he gets back on his feet. Thank you for taking the time to keep us informed and tell him we are pulling for him.
Monique, I will pray for your Dad right now. Has it been determined that he has metastasis in the bone marrow? That I think is where I am now, My platelets hover in the 15 to 40 range, and HGB has been low too, with transfusions every 2 weeks.You certainly are a wonderful caretaker for your Dad. He is such a warrior to pursue the trial in his condition, I wish you the best always.
We don’t have any verification that it’s in the marrow, I’m assuming since his platelets, WBC and HBG has been dropping. Although it could be from this entire situation, we Are trying to correct it. Thank you 😊
It could easily be a cumulative result of all the chemo and the current trial, Here are some foods that can increase platelet counts. Lean meats such as fish, chicken and turkey are rich in protein, zinc and Vitamin B12, all of which help increase the blood platelet count. Beans contain Vitamin B9 or folate which greatly helps boost the blood platelet count. Some other foods rich in B9 are spinach, asparagus, and oranges. I myself are taking vit b12 pills, and folate pills.
Procrit is an injection that can increase red cells, though nowadays they prefer to just give a transfusion, I pray he gets on his feet and out of icu, and continues to see good results from the trial.
You and your father have been and will remain in our prayers. We are pulling for him. He is so blessed to have you by his side - and I know it is heartbreaking to watch him struggle through all these health issues. God bless you both!
So sorry to read this. While the kidneys do not work properly you cannot have another Lu177 treatment. Otherwise the drug could be blocked in the kidneys and start to radiate and damage them.
It will not make a lot of difference if he gets the next Lu177 treatment weeks later than planned. It just violates the trial protocol.
His kidneys are thankfully recovering slowly. Hopefully we can postpone just 1 week. 👍🏻
Dear Daddysdaughter, No doubt your dad counts you as one of his Biggest Blessings in life. Isn't that what really matters? There are no losers in the fight against cancer; only champions w/each step taken through facing the challenges of a cancer dx+ tx.
Biggest concern as I see it = focus on the NOW in getting your dad stabilized; trial can wait. Once stabilized he may see some residual benefit from initial tx if he has to "sit it out for awhile". So many of us are grateful for the courage it takes of those who opt to participate in clinical trials. It provides Hope for a cure for themselves, but also the advancement of Science in helping others.
Once your dad is stabilized, very important that the Principal Investigator of the clinical trial has the records/is notified of what's going on w/your dad right now, regardless of the cause. Cannot express this enough for his safety & potential safety of others down the road if linked to the trial. Do not just assume the hospital will notify them.
Posting the following for anyone now participating or looking to participate in any clinical trial in the U.S. Wish I could separate the following in italics, but don't know how to from my computer. Do not take this word for word to your own circumstance . Posting for EVERYONE reading who is considering participation in a clinical trial. I have copied it from colorectal cancer forum that I belong to. We have clinical trial participants there too in which one of our members had to stop because of severe side effects, however hers was a PHASE 1 & she was the FIRST participant:
[Code of Federal Regulations] [Title 21, Volume 1] Sec. 50.25 -- Elements of informed consent
...
"Article 7
(7) An explanation of whom to contact for answers to pertinent questions about the research and research subjects' rights, and whom to contact in the event of a research-related injury to the subject."
In addition, the Informed Consent Form that you have already signed should have included detailed contact information, including telephone number, for the person(s) qualified to answer your questions. You can consult your copy of the Informed Consent Form to see whom you should contact.
Furthermore, since this is a clinical trial, the study must be monitored and supervised by an IRB (Institutional Review Board), presumably @ the hospital conducting the study AND presumably conducting monthly meetings to review the progress on the trial and to evaluate whatever adverse events might have been reported. The IRB is required to do all of this in a timely fashion so that if changes need to be made to the protocol, or if certain treatment groups need to be removed from the protocol, then this can be done before unacceptable injury is caused to the patient:
IRB Information Needs
... "All IRBs should have procedures that assure the IRB becomes aware of unexpected problems in ongoing studies in a timely manner."
When you meet with your doctors, there are several things you could try to do:
Find out who, exactly, is the contact person for your clinical trial. It might be the Principal Investigator of this trial, or it might be someone else. Then ask that person the pertinent questions about your trial.
Find out if the hospital has filled out and submitted the required Adverse Event Report for review. The report would be submitted to the local, independent DSMB (Data and Safety Monitoring Board)
Ask when the next meeting of the hospital IRB will take place, and whether the IRB is aware of your severe reactions and whether they will be discussing them there.
Sending Warm Well Wishes to your dad & you for a good recovery.
His kidneys are getting better, everything moving in the right direction. He needs a little time to get back in his feet. Thank you all for your warm thoughts😊
I have been thinking of you both and wondering if he ended up having surgery. I am so relieved to hear he is slowly starting to get better. I can only imagine how scary all of this is for you all. Please keep us/me updated and I will say a prayer that he continues to recover quickly and is able to have treatment #2 soon.
Oh my gosh! I’m so sorry to hear about what your dear father is going through. I will pray for a quick reversal and recovery for him, so he gets stabilized and can treatments.
Prayers for you and your dad. Hoping for a quick recovery. 🙏
At this moment he is just tired, we haven’t asked him yet but I believe that once he is back on his feet that he will try another treatment. Only time will tell. He is looking better today. Praying 🙏🏻
Many thanks to you and your Dad for being out there on the leading edge of technology to make it possible for those of us following to have a chance at new medications.
All of this comes with a risk and you are both to be commended for taking it for the rest of us.
Prayers for you, your Dad, and your extended family at this time,
Hi, He is still in ICU actually doing much better. Has some bowel issues but they are clearing it. He will hopefully go to a regular room today. Labs and electrolytes all normalizing.
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