Dear friends, Dad sadly passed at Brigham and Woman's hospital on January 24, 2015. He never made it out of the hospital. The cancer in his liver continued to climb and he did die from the cancer. I...
i am grateful for the support and advice from everyone on this forum. Wealth of knowledge and kindness of people. Hope everyone beats the crap out of cancer. Don't think I will be visiting often and...
Thank you Beth for the support and warmth. Dad is ok not in pain. Wish we could take him home, however he is very weak and not mobile and needs assistance to eat. We will be moving on to hospice soon....
It's a tough road. Dad is still hospitalized since New Years day. I am really sadden as I see his condition worsen. Liver numbers are climbing. Docs said no more chemo no more meds. He continues to...
Update on dad:Its has been an uneventful new year. Dad had received his first does of jevtana. On New years day we brought him into ER with shortness of breath and abdominal pain. He is still...
Johnkeats, Our MO had told us that chemo is also effective on soft organs. Good luck we also see someone at Dana Farber....
Thank you Allen just sent you a quick email. Happy new year! Blood work ok and currently getting Jevtana now as I sit here and write you. Inquired about tumor profiling. Since he was in the zytiga...
I may be on a different page and apologize but I do see a clinical trial for Prostvac at Dana Farber. https://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2548 A Phase 3...
Allen as always thank you for clarifying. I had to read the article several times and still didn't understand how to relate. I guess staying on the same thought, "genetic anomalies that may dictate...
Came across an article mainly focusing on lung cancer (page 6) and how genotyping benefits for a more targeted method. What does that mean and why hasn't our MO mentioned this to us. Is it something...
Hi Beth, MO prescribed it for my dad about the same time it failed phase 3 trials. It was covered by insurance. This was in hope to control both Mets and soft tissue. It did reduce mets dramatically...
Congrat Tall Allen!...
Thanks Arthur! We did mention avodart at the last appt. along with other combined recommendations. MO didn't say much. He seemed keen on just the Jevtana at this moment. I am sure he is hesitant...
Thank you Cyclone, reading all the posts, I am teary eyed to be blessed with all the warmth and support from you all....
Beth glad you feel better and have a plan! I forgot to mention on the last post dad was taking cometriq (xl-184) since August and in his case had a big improvement in his mets. Something to keep in...
Beth, thanks for the encouragement. Dad took taxotere 1.5 half ago with minimal side effects, the fatigue and loss of appetite was manageable. Hope Jevtana is the same. He didn't have any side...
Just an update, scans were a mixed bag. Bone mets dramatically decreased from the xl but the good is outweighed by bad. Liver spots not only increased in the two lesions but more spots overall. Lungs...
Squirm, Thanks for the Dr Meyers link. Are you currently seeing him? Will take that advice! Happy holidays all! I am so grateful to have folks on this forum with the support and advice. Yes, best...
Thanks kukukajoo, we will try. The year has been uneventful and his health has continue to downgrade. We will see the oncologist on Friday and see where that brings us and what the chemo plan is. I...
Celebrity life, we finally got the scans back. Bad news, liver and lungs has gotten worse. The xl 184 improved the mets but the liver and lungs has gotten much worse. So it really does come down to...
Celebrity life, keep us posted. Dad will be getting ct and bone next Tuesday to see where it brings us. His blood draw on friday was not positive alk phos with an uptick two times in a row the last...
Celebrate life, hope things turns toward the better. We are in a similar situation. My dad has been through most of the protocols as well. His psa is sky rocketing but otherwise he is feeling fine....
Thank you both Tall Allen and Jim! We will be seeing oncologist this Friday and hoping his numbers are in line. Will be studying the below lists in the meantime. The xl still puzzles me. It's amazing...
Thanks Arthur, We will ask about avodart. Unfortunately, the clinical trial is not applicable to dad since he had Xtandi, Xofigi and chemo which looks like an exclusion to the trial. What is really...
Hi Tall Allen, It's been 2 months and his alk phos has continue to come down until last week we saw an uptick from 305 to 328. Psa has continuously climbed up and now 1,600. Dad slowly regained...
Hi Jim, We are in Boston, Ma. Have been with the same oncologist since diagnosed from Dana Farber. Dad is 71 and was diagnosed 3 years ago. Definitely had up and down during the 3 years. He has...
Thanks Barb! Scans were done in August and there was spreading to the lungs and liver. He was in a lot of pain and hadradiation which helped. Due to his condition, and loss of weight, the oncologist...
Thanks all. Another blood draw and seeing oncologist in 2 weeks....
Hi All, Just wanted to know if anyone else has a Psa over 1,000. Since my father has been on xl-184 his psa has gone up significantly while his alko phos has declined steadily over the course 3...
Hi adjust, Glad to hear everything is well. Thanks for sharing. Dad has been on xl184 for a little over two months and he is doing much better. Dosage was adjusted on the second week due to extreme...
Thank you Theresa! It is certainly a roller coaster ride. There are good days and many bad days. He had 6 treatments of taxotere every 3 weeks. Although, when he had taxotere he was not in any pain....
Hi Theresa, Yes very similiar in pain and Psa. Last week during his 2 week interval with his oncologist His Psa is up there 1,232. It's been rising since May. He has tried xofigo during the summer...
Hi Theresa, Is your dad experiencing pain? My dad had local radiation in the beginning of the year on his hip. He was having a lot of pain and couldn't walk. He had a few treatments. And pain...
Thanks Allen, Yes, he is on monthly zometa. After his xofigo he was still in extreme pain and had radiation done on his shoulder pain which I think may also had contributed to his alk phos decreasing...
My father was diagnosed July 2011 with Gleason 9 and mets to bones and lymph nodes. Was started with Lupron in 2011. During 2012 with increase in PSA, he started Zytiga thru clinical trial and...
Before xofigo Psa was 97.94 and alk phos 223. First injection 6/17, second injection 7/22. Psa results on 7/22 were 232 with alk phos of 505 (increase of 138% and 126% respectively from 6/6. August 8...
My dad is a type 2 diabetic for 20 years. He has been on metformin for years as well and still takes 1000 mg twice a day. Diagnosed with Gleason 9 July 2011. And currently extensive widespread mets....
Hi all, how many treatments after infusion do you see an improvement in alk phos? My dad had two infusions and opted out and had no pain relief with both Psa and alk phos going up. He ended up...
Great news adjust, thanks for sharing!...
Thank again adjust. Last night after consulting the oncologist the dosage was reduced to 40mg. Immodium is somewhat helping and relieving the frequency. But all in all 7 times in day doesn't sound...
Hi Adjust, My dad started taking XL184 last night at 60mg. Today he has experieced frequent diarrhea 4 times an hour apart. Unfortunatlly all four time he had loss bowel control and mom had to clean...
Thank you Zimac for the response. The bad news hit us this week and it's been rough. We were at radiation planning yesterday and the radiologist said that there will be a chance that the radiation...
Hi Zimac, Was searching for info on xl184 and came across this post. My dad is a Gleason 9 with extensive mets. He has tried zytiga, Provenge, Xtandi and taxtore. He recently was on xofigo. On the...
Adjust, Thanks for sharing all the details. Please keep us all in the loop....
Thank you all again tremendously. It is great to share experiences and also find support here. I am grateful for all your kind responses. adjust, that is great to hear your PSA is sliding down the...
thank you all for the reponses. adjust, Can you also shares your PSA levels while on XL-184 for the past few months? Also, the oncologist suggested to start my dad off with 60mg which he states is...
Thanks all. Yes the oncologist is prescribing xl184 off label...
My dad was diagnosed July 2011 with Gleason 9 and mets to bones. He has been on hormone therapy and pretty much has gone through the list of zytiga, Provenge, Xtandi, taxotere, and xofigo. All worked...