Hi. I have been bothered by pain “ in the muscle” of my right thigh over the passed nine months. Very bad at times. Both of my legs are swollen right more than left. This is likely due to swollen...
Yup. Been finding other things to do rather than make a final post to the forum, but things are lining up for the moment, so..... I was diagnosed in May 2016 with hormone sensitive metastatic PCa,...
Fairwind- I am very glad you are in the treatment arm. We are three weeks apart for injection dates; I get #4 next week. keep us posted and great luck to you- grandpamarv- everything in your posts...
reply to Sr Sailor regarding variable responses to 177Lu-PSMA- some correlations exist- Some extreme responders also carry BRCA mutations, which cause defect in repair of double strand breaks, which...
UPDATE on VISION trial I am tracking PSA response to 177Lu-PSMA therapy in my signature. My clinical response has been very good but not steady up. 10 days before and after 3rd dose, I felt like a...
Thanks to all for support and kind words- Fairwind: yes, I am getting treated at UCHealth in Denver- a note about Scottsdale- the address they gave me for the Gallium PET-scan location was not useful...
UPDATE on Lutetium-177 PSMA 617 therapy (VISION trial) As described in my previous post, this targeted treatment attacks PCa cells with radioactive molecules that bind to PSMA, get engulfed by the...
Cateydid- I know rising PSA is scary and the urge to hit back is strong. As others have said, second-line ADT is likely one of the options your doc will consider when the PSA number becomes...
BOOKEND CLINICAL TRIALS- an update Almost three years since initial diagnosis of metastatic G10 PCA. I started the journey with a PROSTVAC/docetaxel clinical trial at NIH, which, along with ADT,...
An update from a metastatic G10, 2.5 years since diagnosis. Quick summary: ADT for life, early docetaxel with Prostvac, then Provenge, Xtandi (quick fail), BAT for 6 months, zytiga (total fail), and...
I am very sorry to hear this. Peace and comfort now I hope for a life lived in love. Whatever the stage of the journey, I know that love makes it better. In each day, it is the sacred gift, it is...
It's all a journey, right? Zytiga looks to be my last approved systemic therapy and I have been WAITING on it to tell me, one way or another, what to do about potential clinical trials- They say you...
I wish the best for you in the next steps, Fairwind. I am about to prove resistant to Zytiga I fear and, barring a clinical trial enrollment, will likely face decisions similar to those you make now...
TO Fairwind- But the UCDenver trial is Denmeade's trial- unfortunate they cast you out- maybe another call is warranted? my understanding is they are most concerned with bone mets in dangerous spots...
Just a note about this trial; I had inquired about a Phase II trial on this drug just before this Phase III came out- same people running both trials- I asked about cost to patient- patient was...
Fairwind- My MO wrote the scrip for med and syringes; my wife (an NP) gave me the shots at home; I had just had a scan and we (MO and I) figured that I met the eligibility criteria for Denmeade's...
Hi Fairwind- no trial on BAT- self-administered at home with the blessings of my MO in the Springs; a choice I made given all treatment I receive is palliative in nature anyway- I feel that it did...
Amen to artist mark on making an effort to post to this thread. I check the forum daily but my worries seem disconnected from much that is discussed on main thread. So a bit over 2 years since...
Regarding BAT studies, there are different protocols depending on the study. I am going by memory here, but I think this accurate; please forgive any errors- BATMAN: this study, completed, examined...
Susan&Steve- I am sorry for what you are facing- I too was metastatic G10 (nodes only) on diagnosis, just one year earlier. I can offer only my opinions based on therapy experiences I have had for...
Hi- I believe Provenge is a good addition to any other treatments you may be getting for PCa. Especially if you get it at an early stage of the disease. It is hard to say if you will see direct...
Pierre- I am sorry you find yourself in Round 2, but clearly you have a fighting chance for a clean knockout. Regarding ADT by Lupron, I offer the following comments: (1) focus on the fact that it is...
Sir- I am sorry you are dealing with increasing PSA, especially at your age and with significant family history of disease. The mpMRI, as stated in earlier post, can identify regions in the prostate...
Soldier on dude, good work! regarding the heartburn- the chemo can trigger a lot of histamine release from mast cells in your body- histamine can stimulate stomach acid production a lot, that is one...
Fairwind- I am sorry chemo is on the table. It may well be your best option at this point. It was also my next logical step after a quick fail on Xtandi, but my MO and I decided to try BAT first (my...
hi guy- I am sorry you are facing the beast- I offer comments based a lot on my experience of two years (so far) after diagnosis of de novo metastatic PCa- (1) you will go on ADT of course ASAP- this...
Hi J's wife and J- I post only to relate my experience, and I say at the outset, my case is very atypical (or as my URO said ".... we never see that..."). He also said "...some guys just run hot on...
Hi guys- for me, no physical problems with the Provenge treatments regarding playing of music or the moving of large objects (which is much more difficult for me now anyway after 1.5 years on ADT and...
Fairwind and Faustmann- peace and clarity and luck to you both, brothers rf...
Hi anb- You are in the same trial I was in, I got into Arm A. It is very interesting to note that the original trial did not have Arm C (PROSTVAC before docetaxel) and it makes me wonder (darkly) if...
Hi thomasjohn- I am sorry for the things you are going through. I hope xofigo makes you feel better. Comorbidity is a condition usually physical for which one must account while treating another...
Very hard to see to type right now, through my tears... I am so sorry, Beth. And so sad. I am so thankful you have shared with us, thankful that sharing in this place is sacred and confirming for all...
Oh Beth- You are so strong. You are love in action and presence. Gary is special, as are you.. You guys give me comfort and faith that the special will be there regardless. What you share I carry...
CHAPTER 9: RELEASED and FINAL ENTRY My adventure at NIH is now over. Under trial protocol, patients return to NIH every three months for a lookover, labs, and a lupron shot. Scans are done according...
Real great post, kmclark1- it is hard, daily, to suppress worry- but setting those milestones, aiming towards the better moments in the near future, keeps me half sane at least- thanks for the post rf...
Congratulations! CaliJR on completing this very hard task, and especially on the apparent success of the treatment. Reports like this help us all to feel good- thanks for sharing- rf...
singer-songwriter guitar guy here- 30+ song performance set with 11 originals and mix of covers and traditionals (bluegrass/old time) at this time- adding new songs all the time- music for ~ 2 hrs...
outstanding news!!! rf...
Thanks to all who have responded- I seem to be out of the woods on this thing now- lesions are healing and pain is almost not worth treating with tylenol. Stress is such a mind-killer; unexplained...
Have others experienced a shingles attack (my first) shortly after initiating radiation therapy? I was 3 days in on therapy and begin having dermatome sensitivity on left flank and front abdomen....
Hi Beth and Gary- please do post- it will help me for sure and I hope it helps you. I think that writing about these experiences always helps one to place the more difficult feelings in a broader...
Mtnwife- please know you are not alone- your description is so true to my own experience of late. tomorrow is May 5- I count that as my diagnosis day because it was my first appointment with my MO in...
Starfinder- I am not sure why early STAMPEDE protocols included daily prednisone with docetaxel, but the most recent published protocol:...
thanks guys for the info and tips- soldiering on... rf...
So as my PSA rises post chemo and Prostvac, hematuria detected in the UA triggers a cystoscopy, which reveals a tumor in the bladder neck, and I have been having increased frequency and urgency of...
:-) awesome rf...
So....... Just back from the RO office, first visit- Some background as to current status: Jan 10 NIH visit (PSA = 0.38), hematuria in UA, and I have had episodic bladder spasms, including an episode...
just askin'....... rf...
I am so sorry for you guys- I wish you peace and calm wherever you may find it in this stormy sea. rf...
Hi people- I am here to say you have every reason to be optimistic- the chemo will seriously knock back any cancer that has not been killed by the ADT. the is a thread "taxotere side effects" where...