My PSA increased from 0.46 to 1.09 in 45 days. URO called lasted Wednesday and told me the news. He is starting the process of looking for a affordable drug, xtandi,erleada or nubeqa. My co-pay for theses drugs is over $3000/month.
I emailed my MO at Hollings Cancer Center at MUSC, we have a phone appointment on June 7th. His approach is to find the PC and treat it. URO wants to knock it down with one of these drugs. My problem is, what to do, the pills should put me back to undetectable and the scans will not be effective.
Friends asked me why I see the URO, he’s 12 miles away and just gives me lupron shots and can give me one of the drugs. MO 100 miles away, that’s my answer.
So, what should I do, take the drug or try to find the little SOB’S and treat them?
ET
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Echotango51
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I am not a fan of seeing a Urologist instead of Oncologist. I drive 180 miles to see him. For me the oncologist has better treatment options in my opinion
Did the same. The makers of Xtandi are very accommodating. They will ask for past tax forms to see where you are in financially. From free to affordable.
I had some trouble getting pharmacies to accept the GoodRx coupon for abiraterone but Kroger Specialty pharmacy is charging me $270 per month. If money is a big deal you might consider taking 1/4 the dose with low fat breakfast.
I’m thinking that one of these ADt drugs will put your Psa away again . None like adt ,but personally I ll take it over pc any day . It sucks that paying for it comes to you . C meds Should all be free ! Imho. Good luck brother !
I'm also on a medicare advantage plan, . J&J assistant program allows me to get Abiraterone for free. If you are single and earn less than about 77,500 per year, ( I'm retired) you should qualify. Johnson & johnson 1-800-652-6227.
Two things, you can always telemedicine with MO, as I do, with occasional visit.The other thing is; During my 1st Lupron shot i went into Boston and told my MGH team that i am wanting Nuqeba (darolutamide) but it is to expensive. They impressed me again when the Nurse Practitioner told me don’t contact manufacturer we have already been discussing your case with the team and we are contacting manufacturer for you.
I would think MGH has much more influence than me. They are also working on getting me on Orgovyx (religolix) instead of lupron. Insurance just approved my Nubeqa yesterday after denying me the day before. I have TUFTS medicare preferred. I bet the heavy hitters are working behind the scene on my behalf.
See if a hospital recommended insurance broker can help you create a qualifying event to be able to get off Medicare advantage plans. Never get on a Advantage plan with Medicare, never.
I have been on advantage plans from day one when I turn 65, now 71. All my plans have paid for my lupron shots. My insurance agent told me he might not be able to write me a Medicare supplement plan, if he could it will be expensive . My advantage plan doesn’t cost me anything. Thank you for your reply.
Yes when you go on advantage plans on Medicare you can no longer get part D supplement plan under the guaranteed low price. You gave up that right when you joined the advantage plan. They can now charge you anything they want or deny you outright. There are many other negatives associated with advantage plans when you are sick with serious conditions. That why they should be avoided at all cost when associated with Medicare. I hope the best for you.
As far as we know, you cannot "find the little SOB’S and treat them," unless your pelvic lymph nodes have not been treated. That is a basic misunderstanding of what metastases are. You are thinking of them like dandelions - you weed your lawn often enough and you can get rid of them. Instead think of them like mushrooms growing under an oak tree. It doesn't matter how many you pick - there will always be more. That's because the mycelium extends way down into the soil and into the roots of the tree. It is systemic, and the only way to treat it is systemically - with ADT, advanced hormonals or chemo. You will never be able to get rid of it completely - there are far too many microscopic "spores" - but you can slow it down quite a bit.
There is also no reason not to also treat any visible metastases if it is safe. I'm just not sure it accomplishes much other than reducing PSA.
The most recent evidence (from breast cancer) is that treating metastases does not delay progression. Will that be true for prostate cancer as well? We don't know yet - we will have a better answer in a few years. Meanwhile, it would not be prudent to forgo the hormone therapy.
If prostate cancer ends up being the same as breast cancer, then would that mean that doing chemo, adt etc would not extend life span any better than doing no treatments at all? I know it’s hypothetical, just curious. If that was the case, then quality of life could be much better for a few years while the metastasis burden is low, and guys could have higher energy, sex drive etc. Instead of the opposite.
I'm not sure why you think that hormone therapy and chemo do not extend life in women with breast cancer - they certainly do. QOL is much worse in men who don't avail themselves of the QOL-preserving medicines.
Pc is Not the magic mushroom breed that I like .. good analogy ,it’s the fungus among us ! With 12 clear yours are gonzo . Me with 7 clear , anything could happen . 💪
Get PSMA scanned ASAP, in the next month if possible. Your doubling time is a month right now. At that doubling time and amount of rise your cancer is likely to found by PSA of 2.0
Find out what your dealing with, glad your MO wants to find and treat, this may work for some and may not work for many but don't pass on the possibility.
Get scans read by Dr Kwon at MAYO Clinic Rochester MN for second opinion, Get this arranged now before the scan.
If you haven't had PBLN radiation that might be your next treatment along with ADT for up to two years.
If you have already had PBLN radiation you might get SBRT, and no ADT to see the effect of the radiation.
Depending on your scan results, you might be offered a number of other choices.
Get the scan scheduled right away, Get second opinion, scan review scheduled from DR Kwon right away.
After CyberKnife it looks like you came off all meds, if they can find my PC and treat them that will be good. I’m will be starting xtandi soon and will stay on the pills after they treat the PC, if they are found.Thank you for your reply
Actually I was off all meds. for 1.5 years and my PSA went from <0.1 to 0.4 the less sophisticated scan only showed the T-11 lesion. When it jumped to 7.3 I had the latest PSMA Pet Scan and it revealed more. Then I went on Aptalutamide (Erleada) and Lupron. Have you thought about Apatalutamide? It is a vastly improved Casodex and seems to have less side effects.
My uro is working with xtandi. I had too sign some papers Wednesday for the nurse. I live only on my social security income. Haven’t drawn on any of my retirement funds, which is a good thing. I have no taxable income. The nurse told me that’s even better for me. Should get the drugs really cheap or at no cost. I will know maybe next week.
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