OurTime I too am being treated for neuroendocrine PC. Look my thread entitled Small Cell Cancer My Journey. It might be helpful. I went through the Etopsise/Carbopltin chemotherapy. It reduced the...
I just got the results from my latest scans and am happy to report that there has been no progression. Given the depressing reports I read on how aggressive small cell is, I consider myself very...
Sorry for the lengthy delay for those of you who replied. I've been off the site for a while. Things are still about the same. I'm off work right now on disability. I needed a break! I go back in a...
Time for an update: I had my 6 months on Lynparza scans on Tuesday. I was supposed to meet with the Dr. today to get the results. However, he called us Tuesday late afternoon and commented that since...
Thanks Cyclone, While I hate knowing that others my be facing what I face, I hop that this thread will be useful to some. BTW, the only way that I am aware of to confirm Neuroendocrine PC is with a...
Jack, Sounds like a tough few days. Glad you are doing better. Thanks for the update Randy...
Jack, Thank you for reporting your experience. It is a great reminder to all of us. My wife and I are both vaccinated but have close relatives who refuse. It makes me very nervous being around them...
Thanks everyone for your responses. My thyroid level is now normal. Vitamin D I don't have results on yet. My big question is the T level. Mine is 101. I can raise it with T Replacement but my fear...
I just got the results back yesterday from my scans last week - no changes!. I have been on Lynparza now for 4 months and so far it has held my tumor in check. For a drug that is not even approved...
UPDATE - I have my next scans this Friday and will get the results on Tuesday. I have developed a bit of a shortness of breath issue recently and fear that I may now have lung metaatasies. I guess I...
One note I would add - the food in the cafeteria is generally better than what they serve in the rooms. Ask me how I know!...
Stephanie, That is fantastic news for you and your husband. Thanks for letting us know...
Stephanie, My heart goes out to you and your husband. I was originally diagnosed with prostate cancer. After fighting it successfully for 18 months I learned it had transdifferentiated (Dr. speak for...
I've been on Lynparza for 60 days now. Last Friday was my first scans since I started on it. I met with my Oncologist today to get the results. I actually was dreading the meeting because I had...
Thank you guys for your great support. It means a lot to me....
Well, the leaky heart valve verdict is in. The good news is that I don't have one. The bad news is - that I don't have one. What I mean by that is I was looking for the positive diagnosis, and the...
Thanks to all who have responded. Had the echo yesterday and meet with the Cardiologist in about an hour. Normally I'd be pretty nervous but really looking forward to the possibility that this might...
Update It's been about 60 days now since I had my last infusion of Carboplatin/Etoposide and about 30 days since I started Lynparza. A couple of changes have occurred with respect to the side effects...
Djin, I normally follow, and agree with your comments but I'm missing something here. To me, any number at G9 or above pretty much negates the value of doing surgery only to learn that your prostate...
I had my last chemotherapy infusions three weeks ago so Monday it was time for new scans. They did both a CT with and without contrast and a brain MRI the same way. I met with my Oncologist yesterday...
Beazerman, Your G10 diagnosis mirrors mine almost exactly from Nov of 2019. My RO recommended against brachybuit I did have the other two legs of the triple play. By Feb 2020. I was in complete...
I began my 6th and final round of chemo yesterday. Two days to go now. I have handled the chemo reasonably well in the past and that seems to be the case so far as well. My big SE's will be deep...
I had an email exchange with Dr. Beltran about the Clinical Trial she mentioned in our earlier conversation. It is HPN328 entitled Study in Patients With Advanced Cancers Associated With Expression...
logoslidat, Thanks for laying it out there. I appreciate the candor and you are 100% correct Djin, Thanks again for the great information. IT has been very helpful and I deeply appreciate it....
Djin, Thanks for the quick response and the trial data you sent. I had not seen these. It's good to know that the drug appears to work pretty well. I used a different search and find some, but not...
I will be getting my 6th and final round of chemo next week. My Oncologist has now suggested that I go on Lynpanza from AstraZeneca. I had never heard of it so I did some research on it yesterday....
Dusty, Welcome to the site and congratulations on being proactive. My biopsy was done with a general anesthetic and I didn't feel a thing. Prpopofol is your friend as far as I am concerned....
Thank you all for your inciteful and caring replies. This forum is amazing in the level of support it provides it's members. I did find the elusive drug name that I mentioned in my last post. It is...
Had a very much anticipated call with Dr. Hishima Beltran of the Dana Farber Cancer Institute in Boston this afternoon. She specializes in genitourinary and neuroendocrine cancers. Her name comes up...
Cyclone, Thanks for your always uplifting and knowledgeable response. To answer your question about ADT, My Oncologist felt at first that I had been misdiagnosed and had small cell prostate cancer...
First of all, thank you to all who have posted replies. I truly appreciate your inciteful thoughts and continued prayers. I began my fifth round of chermo with carboplatin and etoposide yesterday....
It has been a while since I last posted and much has happened. I continue to recover slowly from my Sepsis incident in December. It seems slow but I am definitely getting better. I have even returned...
Barb, So sorry to hear of your husband's diagnosis. I was diagnosed with G10 PCA back in November of 2019. I was treated with the usual therapies for regular PCa - radiation, Lupron, etc. and...
Thanks to all for your wonderful posts. Your concern and care us deeply appreciated. Recovery seems to be occuring more in gains and losses rather than a marathon. A couple of good days, then a bad...
Well, my NEPC journey took a petty unexpected detour. Since the week after Thanksgiving I have been having difficulty with uncontrollable diarrhea. It was bad enough that I have been hospitalized...
I completed the third infusion of Etoposide in the first round therapy this morning. Have experienced very minimal nausea but the meds they gave me for that have worked perfectly and it has developed...
There seems to be pretty minimal information, both on this forum and, to lessor degree, in the published medical/research field. What is there is pretty ominous. Most of the medical pares start out...
Minn17 I'm certainly no Dr. but from everything I have learned so far, Small Cell does not create PSA or react to treatments for it so it seems pretty unlikely you are dealing with that. In my case,...
Update As noted above, the immunotherapy treatment I was on has failed and my tumor and affected Lymph Nodes have continued to grow. I was supposed to begin a ne chemo regimen last week but wound up...
UPDATE - 11/25/20 I have now been on the clinical trial of the immunotherapy combination of Nivolumab (Opdivo) and Iplililamab (Yervoy) for eight weeks. I've had 4 infusions of Opdivo and two of...
This is an issue that I too will be facing in the not-too distant future. With my new diagnosis I have been given from 6 months to maybe 24 months to live. Hope springs eternal as they say, but at...
Thanks!! I truly needed that!...
I suffer from it as well. For me, it was all about drag racing and loud, unmuffled engines. Absolutely loved it at the time but I am certainly paying for it now. It's getting worse as I age...
I get the nivolumab every two weeks and the Ipilumamob every six weeks. Have had one infusion of both drugs and get mu second infusion of just the Nivolumab tomorrow. So far, I have had no...
This is one of the two drugs, the other being Nivolumab, that I am currently taking in a clinical trial. My prostate cancer is different in that it is not adenocarcinoma but rather small cell...
I have small veins. It drives nurses nuts and causes me some amount of pain since I usually have to get stuck at least twice in order to get a good vein. My infusion nurses convinced me to get a port...
Min17 God Bless you and your husband. This is exactly what worries me about Neuroendicrine Prostate Cancer NEPC. It can, and does mutate from regular PCa, especially after long term ADT and when you...
Same treatment I started on last Friday. First day and a half were pretty rough but no real issues since....
I had my video conference with Dr. Beltran at Dana Farber early this morning. She is outstanding and I was very impressed. While she did concur with my MO's decision to put me in the clinical trial I...
Thanks all for your wonderful responses. I loved Djin's comment as well. That's a very memorable line. This trial is designed to last for 17 six week cycles or about two years. My goal is to be...