Looking for some feedback and advice from the amazing Warriors on this board. I wrote about the VERU-111 trial A few weeks ago. We went through the screening process and anxiously awaited the results only to find that my dad‘s blood was damaged in shipping. We had to go through the bloodwork again and we finally found out that he did not make it into the trial. His hemoglobin was an 8.1 and it needed to be over 9 to get into the study. It has only been seven weeks since he finished his last radium 223 treatment so I’m wondering if this had anything to do with the lower hemoglobin.
My dad‘s oncologist at Hopkins wanted some time to think about what to do next and proposed Bipolar Androgen Therapy for him. He received his blood transfusion this past Wednesday along with the BAT. They gave him one bag of blood, did BAT and then gave him another bag of blood. He now has a low-grade fever. He started feeling bad that evening and has not been able to sleep since he received the shots. His pain has also increased to the worst it’s ever been. I feel terrible for him, we are going to be reaching out to the doctor today but wondering if anybody else has gone through this and what their side effects work.
My dad (76) has been on this journey with stage 4 metastasized prostate cancer for a year and a half. He has castration-resistant prostate cancer with progression despite abiraterone, enzalutamide, and docetaxel chemotherapy and radium-223. His alkaline phosphate were about 1500 prior to the start and now they are almost normal. However his PSA remains around 500. My Dad has the somatic TP53 mutation. He has widespread Mets but no organ involvement.
Please share your feedback with BAT therapy or any advice you can give us right now. I would like to add that my dad continues to work despite all of these treatments, however, he has not been able to get out of bed since his BAT shot. He is a true fighter! We would appreciate any advice or feedback. Thanks so much!
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Amandaslp78
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The "BAT shot" would presumably have been testosterone cypionate injected into muscle (usually thigh.) In itself, that should not cause him much discomfort of any kind.
The "increase" in pain is referring to pain from mets? i.e. the mets seem to have immediately responded to testosterone restoration. Does the oncologist know about this response?
It could be that your father will not benefit from BAT. Not all CRPC cases do.
The testosterone will be cleared from his body soon. Men on BAT are castrate again 4 weeks after the injection.
Hello Patrick, thank you so much for your reply. We are slowly learning about BAT. We are putting an email together to my Dad’s Dr letting him know of his symptoms today. He has not slept in almost 48 hours and the pain in his back is terrible. He also has a low-grade fever. I’m wondering if that could be from the blood transfusion he had the same day. He had one blood transfusion, BAT and then another blood transfusion.
As you see, it works well for some men, but may make things worse for others. It has only been used in men who are asymptomatic (= no bone pain). Although there is sometimes a temporary increase in pain as radiation therapy begins, I think his doctor will want to give him an anti-androgen immediately to block the testosterone.
If his hemoglobin is now normal (and the testosterone should help with that at least), maybe Jevtana will work for him. Let us know what the doctor says.
No anti androgen provided, the pain may... in theory per oncologist produce positive response despite all things by symptoms and labs going terribly down hill immediately following buttocks injection with severe response.
Thank you so much for sharing that article. I shared it with my family and it helped us all better understand what is going on.
My Dad ended up in the hospital. He developed a fever and his pain was extreme and he could barely walk. They have done so many tests, I can’t keep up with what is going on. He is still in the hospital and hopes to come home tomorrow. They are meeting today to talk about everything. His oncologist does not want to abandon the BAT quite yet. He wants to see if he may benefit from it at all. They are doing another transfusion today. Currently his pain is under control, he is walking with a cane and he has his appetite back. Those are all good signs to me. We will ask about Jevtana.
Could you shed some light as to why his Ferritin is high? Thanks!
I don't know why his ferritin is high - there are many possible causes. How is his hemoglobin? RBC? Liver enzymes? thyroid function? Any tumors in the liver?
Update from 5 day hospitalization 10/17/19- pathology, symptoms were due to a HTR from error. Labs, severe symptoms and drop in post transfusion hemoglobin from 10 to 7.8 in 24 hrs . He felt fabulous best in a long time 2 days after d/c.
He had lab work done yesterday and his second testosterone shot, his PSA dropped 50% and is in very little pain. We are all so grateful for the good news and outcome following all of this.
My dad’s oncologist did confirm that the severe increase in pain was due to the testosterone shot. He wants to wait it out to see if he will get any benefits from it. They have his pain under control right now. Thank you for the information regarding the other treatments. We have looked into those however, I believe he wants to stay in Maryland at Hopkins.
Thank you for your insight. Dad is responding well now, pain and hospitalization was from a HTR that was done on same as first T shot. PSA dropped in 1/2, sad feeling really good, a big 180 degree turn from no more options. We’re all feeling grateful.
We all feel for your Dad.... Is there any pain meds his doctor could recommend? You are lovely and caring daughter, your Dad is sooooo blessed for you. BTW Amanda is one of my favorite female names....
Thank you for the kind words! Our father is our hero and we are trying to do everything in our power to learn more about what may help him. This board has been a blessing to us!
You might want to ask if he can be given the “bio identical” format of T rather than the type typically used. Dr Friedman in his book discusses the moleculer structural differences in the 2 Ts. Getting the form identical to what the human body produces might change the results and perhaps the side effects.
Most testosterone injections are bioidentical. Testosterone cipionate, for example, is only attached to cipionate because the cipionate allows for a slow release as the testosterone is cleaved and released into circulation, but it is the bioidentical testosterone which then circulates and has its action.
I have corresponded with JOHN Hopkins about BAT and I am planning to do the treatment on my own - the oncologist in the UK are very conservative. I have been advised that when testosterone is introduced there is flaring and tumours expand as they react. The flaring can be some 10-15% and that is what causes pain. Particularly if the tumours are close to nerve tissue and areas such as the spine. What should have happened (in my opinion) is your father should have been put on steroids to shrink the tumours a week or so before and the pain would not have been so pronounced.
Would be very interested to know more about your experiences.
I will send you a message. My dad just had his fourth T shot this past Wednesday and cannot move today. He is in excruciating pain once again. He has widespread Mets. The first three have really improved his quality of life. We are hoping the pain subsides in the next couple of days for him. They are going to re-challenge Xtandi with him this week but only give him three of the four pills since the last time made him so tired.
Hello, dad had severe radiological progression following 4 th T shot with severe acute Low back pain, he was hospitalized and noted to have many spinal compression fx’s and is now doing better on Jevtana at his local Hospital close to home. I knew there had to be a pay off to feeling so good on it for a couple months.
He should of discontinued BAT after 3rd dose in hindsight. Best to your dad!
Dad has had three good months-good by definition in his quality of life on BAT, it boosted his energy, improved his anemia, pain and mobility, He unfortunately experienced an acute hemolytic reaction from a blood transfusion the same time he received his first Super T shot so he initially was mid diagnosed that it was due to T. He since had no pain with shots number 2 and 3 .
PSA dropped with first shot and remained relatively stable but increased slightly with 2 and 3. He works full time and has a fairly active lifestyle. This was his last shot and he as my sister mentioned is having severe spine pain...hindsight perhaps should of held off on that. Dad had severe lumbar stenosis prior to PC so his pain is always in his low back. Looking back on his RX, he started xtandi the same day he had external beam radiation and his first dose of Xofigo . He was taken off after 4’weeks because PSA almost doubled but his AP’s were down and Hemoglobin was up so we’re hopeful xtandi will be a good intervention now. My father has a somatic TP53 mutation and we were told there is recent data that patients with somatic TP53 mutations respond more favorably to BAT compared to other patients. There are a few people in this awesome group who self Rx who are experts in this. Best to you!
Thank you for sharing, I wish all the best to your father from all of my heart! I’m looking into BAT as an option for my dad, is John Hopkins recommended?
I would say Yes for BAT and for options for trials , not so much for standard of care treatment as we found they lacked a comprehensive approach and a move on to Hopice when trials aren't to be found. Best to you and your dad, stay positive. Dad is doing well now on Jevtana.
Hello! This is my sister and I on this post. My dad is no longer on BAT. He is doing Jevtana chemotherapy right now. Where are you guys located and considering getting the treatment? When was your dad diagnosed and what treatments has he had so far?
Hello. We are located in Washington DC, so we were going to consult with Dr. Denmeade at JHU. My father was diagnosed in 2017. He has had orchiectomy, Xtandi, Taxotere, and Jevtana. His PSA was around 400 prior to the orchiectomy and dropped eventually to 0.2. After a while it rose again, and he began Xtandi, which worked for about 7 months. He then had 6 rounds of Taxotere, and his PSA did not go down much. Subsequently, he was put on Jevtana; after a few rounds, it was determined that it was not working either.
Just like your father, my papa has the TP53 mutation as well.
Do you think BAT was helpful at all? How is Jevtana working for your father?
We are located just a little south of Annapolis. My dad has also been treated at Hopkins by Dr Antonarakis who works with Denmeade. I would say it gave him a good three months, it boosted his energy and improved his pain and mobility. After the first treatment, his PSA spiked like crazy. Are you on them Metastic board on Facebook by chance? There’s also some information on there as well. I am happy to answer any other questions you have. We have been through the majority of treatments.
Ok, just thought I’d tell you about it. We’ve found it to be a wealth of information to us.
I honestly don’t much about the mutation.
My Dad is about to have his 2nd Jevtana infusion. Blood levels are looking good and pain seems a little better. Have they considered clinical trials for your Dad?
His current MO has considered clinical trials. I have come to conclude that it's always a positive thing to have other MO that have a non-orthodox approach if things are not working. PCa is a highly non-linear disease.
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