Blood transfusions dependent/clinical trials.

[SaratogaNYAnthony]

Hello, I have been blood transfusion dependent for the past year. I go on a weekly basis. My family and I have been to both Dana-Farber in Boston, and most recently Sloan Kettering in Westchester, New York. Sloan has said that I am in eligible for any clinical trials due to my dependency on blood transfusions. Dana-Farber has not said that. They have mentioned clinical trial one and two phases, but they have nothing available in three or four phase. There was talk of PARP inhibitors trial, however they are not recruiting. I am currently on Carboplatin/Cabazitaxel, all other standard medication I have tried. We just sent a biopsy to Foundation One.

I’m reaching out to see if anyone is in the same situation as I am with these transfusions/trials. My family and I are not giving up!

[Dan59]

Anthony, I do not have any advice on Blood transfusions and trials, I myself am ineligable for any trial I would want , but I just wanted to say I am pulling for you to pull through this, and hoping you get a good response to carbo cabitaxol. I will start Cabitaxol on Thursday so we are in this together. Wishing you the best.

Dan

[SaratogaNYAnthony in reply to Dan59]

Good luck to you, Dan. I found Cabizataxel tolerable than the Taxotere. I had 10 treatments at a lower dosage (20% less than the recommended dosage) then took a break for about 7 weeks. It’s at that 7 week mark I start to get “tumor fevers” of over 100. Definitely a battle. I’m pulling for you too. Wishing you the best.

Anthony

[SaratogaNYAnthony]

Thank you for the response and helpful information!

[Ellehaze]

Hi. My dad has castration resistant advanced prostate cancer with bone metastasis and suddenly became transfusion dependent on a weekly basis one month ago. He had been getting monthly Radium 223 injections for 3-4 months and taking Xtandi. Doctors are acting like getting weekly transfusions is too frequent to keep up and they want to put him on hospice but he wants to keep fighting. I’m also looking for trials. Did you find any? And do you get red blood cells and platelets or just RBCs? Did you find it difficult to get your weekly transfusions?

[SaratogaNYAnthony in reply to Ellehaze]

Dear Ellehaze,

I’m sorry to hear that your dads doctors are suggesting giving up. I have been transfusion dependent for over a year getting RBC’s every Monday like clockwork with an occasional bag of platelets after chemo. My hemoglobin goes anywhere from 7.5 to 9.5 and cannot maintain it.

Thankfully our oncologist has given us transfusions without much of a problem. As I mentioned, I go in every Monday and they expect at least 1-2 units. Can you get a second opinion or change oncologists? I switched doctors early on after my Radium 223, and you have the right to do so as well. My oncology team is in Albany NY, but We went to both Dana Farber and Sloan Kettering (Boston/NYC) for second opinions and both suggested keeping up with the transfusion, chemo in hopes that would help. No one has ever said anything about hospice.

We did some genetic testing at Foundation One in hopes that will help us with treatments.

Your dad is lucky to have a daughter to advocate for him. Stay positive and don’t give up!

[Ellehaze]

Thank you for your response and encouragement! Did your transfusion dependence come after the Radium 223? My dad was due for his 4th or 5th injection when he was suddenly hospitalized with severe anemia so they discontinued it. He was also taking Xtandi until two weeks ago, but they said his PSA had risen a lot so they must not be working and took him off that as well. Is your PSA low? Also, do you mind telling me what Foundation One is, or pointing me somewhere for more info?

[SaratogaNYAnthony in reply to Ellehaze]

I became transfusion dependent following Radium 223 (3 treatments), and Zytega. Zytega stopped working and PSA went up to 700. I’m in the low 200’s now on chemo. Foundation One is designed to provide physicians with clinically actionable information to guide treatment decisions for patients based on the genomic profile of their disease. Test results provide information about clinically significant alterations, potential targeted therapies, available clinical trials, and quantitative markers of response for immunotherapy.

I would recommend this to your oncologist or as I mentioned, find a new oncologist that is more supportive. Always get a second or third opinion.