Thank you for your condolences. Keep doing what you are doing on here. Bob and I found this site both comforting and informative. Jill...
Thank you for your kind words. I'm not so sure about handling it well...He was a great guy! My hope is that through communication we can better understand the components of this disease and help...
Hi, I am sorry to hear of your prognosis.Thus is Bob's wife, he was only able to have that one bland liver embolization. The cancer was taking over too fast. The immuniotherapy was stopped and on...
I am still chuggin' along. I have had immunotherapy (Opdivo/Yerovoy) and my liver numbers went up so I was off and on with topoeteacan since the radiation treatments in September. All the pain in the...
I saw my RO yesterday, my oncologist today and had my first of 10 radiation treatments to the mass. I also had an MRI today of the brain as my oncologist is afraid yet of the small cell going to the...
Thank you Allen for these talking points. I will bring it up with my RO on Thursday....
My RO does think it is small cell prostate cancer. Why he didn't think of radiation on the tumor when the chemo was over I do not know. I see him on Thursday and plan to ask that and how is plans to...
I gave him a copy of them at the start of chemo. He was impressed with the list. I asked him if a clinical trial would work for me when I met with him at the 6 week checkup. He said, we will talk...
I got the results of my MRI and now this week I am to get a PET scan. My RO called and wants to radiate the tumor. I'm not sure if I should be on here or not, as my oncologist is calling it Small...
Thank you for all the encouragement and responses. I see my doctor on Wednesday and will share this with him. Although I am getting my strength back, recovery is slow. This past week I noticed a...
I am on medicare. Not sure what that will cover. I felt great after 3 rounds of chemo - no pain, tumor shrunk so I could easily pass feces... but I had to wait 3 months for a PET scan... So I had to...
Thank you for the articles and your thoughts on this. Today I emailed the UW doctor you referred me to earlier, Allan and he concurs with you. Dr. Liu said he does not routinely use prophylactic...
In April I learned that my Prostate Cancer became Small Cell Prostate Cancer. I was unable to have bowel movements and had a pain in the area my prostate was. After a PET scan a large mass was found...
No he did not. Our doctor mentioned that he had access to the trials and was going to make contact with Mayo and UW. Port went in today. Getting closer to pain relief and shrinkage....
This is what I heard back from Glenn: The plan is appropriate. True small cell of the prostate is treated similarly to “extra-pulmonary” small cell cancer, which is treated like small cell cancer of...
Yes, I did share the information you gave me. He was impressed by the list you compiled. He said he has access to information not yet made public that he will be checking into also. I did not get...
I met with my medical oncologist today, the one I was first assigned to is leaving in June. My doctor has not treated Small Cell Cancer from the prostate before. He has treated it in the lung. He...
Thank you for that information. We are meeting with Dr. Jasleen Randhawa tomorrow afternoon for a consult. Our daughter is a radiation therapist and said she is "insanely intelligent". I sure hope...
Thank you Allen for that information. I have been looking at other threads on Healing Well forum and found Dr. Eugene Kwon at Mayo Clinic as a PC specialist medical oncologist, have you heard of him....
I might repost now that I know what I have, maybe others are more likely to chime in on treatments or experimental drugs available? I have a consult with an oncologist on Monday he mentioned chemo....
My RO called this afternoon. Bad news. Small cell sarcoma....
I had the biopsy today. It was a CT-guided core biopsy of presacral mass. They went in through my right butt cheek. Reading my report, using coaxial technique four separate 18-gauge core biopsy...
I am glad to hear you don't think it is PC. He said that it is unlikely but he has seen PC come back and PSA stay 0. I would be feeling much better if he had called it a cyst....
I am near the end of my third year on Firmagon, am to finish up in July. So far my PSA has been undetectable. The past couple of months I have had problems with rectal pain and constipation. I told...
They didn't take my PSA after surgery. Following surgery my urologist wanted to wait and get my PSA but my RO wanted to get me on hormones immediately when they found that I had lymph node...
I like the way you think! I alternate between seeing my urologist and RO every 6 months. My urologist is extremely positive, my RO reminds me that lymph node involvement can be tough to get. Thank...
Thank you for your responses. My wife and I attend an Us TOO support group and met a hematologist there that we both really like, that is why I was considering that route. So far I have been really...
I am 2 1/2 years into my 3 years of firmagon after surgery and radiation. I am wondering if anyone else is in the same position as I am and how you are doing. I will be honest. These lymph nodes...
I was 64, diagnosed gleason 9, after DeVinci I was down graded to a 7, so what they say you have is not always what you end up with. See my signature....
I have been on firmagon 1 year now. I guess my body is getting somewhat used to it but still getting fatigued and working hard to keep the weight down. The hot flashes mostly come during the day time...
hi, I just joined this forum today, I fall into this club too...