Yes - I started on Zolodex, failed after about 7 months, went to degarelix, lasted about 1 year, now onto Lupron - its one year this month and still working. Sequencing on different HT drugs can...
Advocates can be very helpful, but you also need to be insistent and continue your appeals all the way up the chain. I recently went through something similar with Aetna on a $4400 PET scan. it took...
I'm not a Bracytherapy guy but has SRT and had an episode of blood in urine about 2 1/2 yars after RT. A cystoscopy revealed radiation damage tothe urethea...
I did it, the shots are painful and the SE's knocked me out for about 36 hours each month. If they do it, they will likely do degaralix with casodex, not degaralix alone. But if you haven't done HT...
25 stinking pounds - that's with a 6 day/week 1hr/day exercise routine. Clothes dont fit anymore, On 1/1 I downloaded one of those free calorie counting apps to my phone and began to eat like a bird....
Chattybill The wonderful insurance industry will only pay for 5 pills/month, whether medically indicated or not. I think its pretty universal. Get your doc to order 20mg and get a pill cutter. You'll...
Mel yes I did notice a difference before the blood tested confirmed it. Reduced hot flashes, began to think about perhaps trying to have sex /community/emoticons/turn.gif . It didn't register with me...
Here an interesting twist for HT club members. I have chimed in from time to time about the difficultly of the traditional meds to keep my T levels down. Started with Zolodex, worked for 7 months...
Todd- thanks - looks like zytiga is next for me so I will check out the blog. You did it pre chemo right?...
Mel. I gained 25 lbs over 18 months. But I was very very good for the first 12 months, only 5-10 pounds. All went to hell in the past 6 months. Now I somehow have to try to lose at least 15...
Thanks so much for Posting. I'm still laughing. I sent it to my oncologist!!!...
my T has increased steadily over the past 4 months, now at 150 with a T free of 48...
Didn't want to highjack Hummbugs thread, but thought he wouldn't mind on a little twist on the title. Its interesting how varied this disease is and how uncertain the treatment protocal is. Anyway, I...
Interesting - I'll talk to Petrylak next week. As he did a lot of work getting Taxotere FDA approved initially, I'm sure he has some insight here. I (unfortunately) might be a candidate as degarelix...
Yep my docs monitor it regularly. There is a school of thought that Vitamin D has some cancer fighting properties. I in fact take a daily supplement...
redwings 57 - I had failed RT within 8 months or so. My oncologist suggested the NA/PET because of how quickly I failed both surgery and RT....
grandpa - We are in about the same boat, PSA about the same , same head to toes Mets, also on casodex and degaralex. I do see a top notch oncologist (Petrylak) every month for my degarelix shot. At...
If your willing to drive a little, Dan Petrylak from Yale. he is in Greenwich Conn....
tHANKS ALL, I will talk to Petrylak in 3 weeks, he wants to run another PSA. You have all given me some interesting things to discuss with him (Casodex). With my PSA still at 0, I'm not prepared to...
still am on casodex. I haven't heard of it promoting growth . you have given a question to ask. thanks...
Quick summary - Surgery in 09, IMRT in '10, HT started in '12. Mets identified in march 12, multiple lesions. No pain. First visible only with a PET, now visible with regular bone scan. Started HT...
I called his office a few times, left messages, ect. Still no call back and still no letter. He is a great surgeon and I have always valued his advice not only on surgical issues but also on...
As a person with asymptomatic METS, I am on continuous HT. Until one becomes refractory (PSA rising despite HT) that is likely to be the recommended treatment. I think the drugs and the surgery...
Just had it confirmed from Tewari's office. His last day in NY Presbyterian is 10//14. letter is going out to all patients later this week....
Thanks for the heads up - Im trying to get through to his office, but they are sending all calls to an answering services ( a little bush league if you ask me). I left a message and hopefully they...
Steve ---15 posts per beer.... nah too many posts. I'm going with Susan......., wings and beer tonight, its friday happy hour after all...
Well its been 18 months on HT, with the last 12 on Degarelix. I have learned to deal with hot flashes, fatigue, complete loss of libido, inability to get an erection (which is ok , see loss of...
Lee - As a fellow Degarlix user, Im interested in whether you have seen any METS yet. Also curious as to where your T level has gone since you began using the drug. I find the drug to have some very...
todd- im sure your feeling down, but let me quote a line from a great movie of our time... "over, it ain over till we say its over, was it over when the germans bombed pearl Harbor., no and it aint...
as a degaralix patient for about 1 year now, the SEs you mentioned are exactly on point, from the pain at injection site, redness, swelling muscuar pain ect.., all exactly right. its a strong drug...
had it done earlier this year. was teriffied going in. Turned out to be unpleasent , but no dig deal. They used the gel on me (very sloppy). No problem drinving home...
7 pills a month, no more (Aetna). Very frustrating and expensive...
With a positive margin, radiation may be in his future, but they will moniter his PSA for now. If it stays low, you guys are good to go!!!...
I'm with overthepond. I actually forgot my password its been so long since I've been on this site. When I first joined, I would say that about 40% of the discussion threads were - to coin a phrase...
Good thread Indirectly yes, I have changed my financial plan. I am 52 and really want to get off the merry go round of being a securities attorney and worrying every day about my clients ability to...
lee I've done zolodex aNd degaralex. Degaralex is different. Done 9 shots so far and it's pretty painful each time. The itching usually lasts only a day or two but then the spot of the shot will turn...
Southern comfort I could not have said it better than you. I feel exactly as you do and its good to know Im not alone. great attitude. You will get through your dog days I feel sure....
Thank you Piy - it does appear one need to be refractory for Aetna's coverage. That is what i thought...
Pepsiguy - Best of luck to you, I will be wacthing as provenge may be in the future for me as well. One question ----Just looking at your signature, when you say "bone scan inconclusive, 2nd scan...
49 You should consult an attorney. I happen to have first hand experience that you do not need a psa of 4 or higher to suceed on a failure to diagnosis case. Can't say anything more but it is worth...
I discussed estradiol with my oncologist. He said there is a very small chance that it might have a negative effect on the tumors (promote tumor growth). Its a small chance he said, but he suggested...
In fact, most attorneys do not spend any time in court. Whether they are securities attorneys like myself, real estate attorneys or, corporate law attorneys....... litigators are indeed a a 'special"...
Attorney - specializing in Mutual funds and investment advisers. I mostly write,react to the never ending stream of new laws and regulations, and counsel boards. I have never been in a court room my...
I try to describe it to my friends in this way. It is NOT at all like going in a suana or outside on a 100 degree day. The heat starts inside, like my blood is boiling, then emerges through the skin,...
My 2 cents (and its probably worth that) - I don't think you should assume a recurrence at this point. Going from .01 to .03-.06 in 3 years is FABULOUS. At this rate, it might be 20 years before you...
wow - i guess this thread hit a nerve. Thanks to everyone for the feedback . I was off line yesterday meeting with the oncologist as to next steps. I also learned a few things along the way. Lesson 1...
Jazzman- Thanks, that is my initial reaction as well...
just got some bad news (see my "Fudge" post). But here is a different question, I have been working on a great opportunity with a potential new employer and think I may get an offer soon. I was not...
Its a sad day for me. The plan had been to take an HT holiday. been on the stuff for 1 year now and i hate it. Only needed to confirm that my METS, previously visible only with a PET scan, did not...
That sucks, I wonder whether they will recommend ADT3 , adding another hormone drug to the mix, or something else. keep us posted and keep your spirits up....