Moving into Chemotherapy for my next step and I told my MO that I would prefer Lu 177 over Chemotherapy. That was the wrong thing he wanted to hear. He said that I would need to follow protocols and chemo was the next therapy. I told him I was going to check on LU 177 in Las Vegas 100 miles from my home. As he walked out the door he said good luck with that. The next day he informed me I was no longer a patient of his. Get another doctor and we will send your records. So that’s what I did and my new MO is in Vegas and appointment soon.
That being said at least everything will be in one town.
He told you correctly that Pluvicto is only approved after chemo. Outside of a clinical trial, that is the only way to get it in the US. Relying on random internet sources is dangerous for your health.
Chemo saved my life nearly 9 years ago. Looks like you're ready to jump into the fire. For some, fearing chemo can be a fatal mistake.
Pluvicto was approved by the FDA after chemo,If you have Medicare part B directly with the goverment (no medicare advantage etc), Medicare will pay based in medical necessity and not the criteria used by the FDA to approve Pluvicto.
I had 4 treatments of Pluvicto and Medicare paid and I never had chemo because I have a peripheral neuropathy.
Talk with your MO.
Lu 177 PSMA treatment has been sbown to be not inferior to chemo when there is a failure of second generation anti androgens.
That's not an "article". It's a conspiracy filled rant with no citations to back it up. And consider that Pluvicto extended life by an average of 4 months according to Novartis, the drug maker.
I believe that is an average or median for all those treated....so for the men who have good results, implies the time would be more than 4 months. Unless the 4 months already excludes the failures????? I'd need to carefully read the study(ies?).
Doctors don’t make the call, they have to follow the so-called “Proper Protocols” set forth by Big Pharma and the FDA, that way all the wheels receive the proper amount of grease. Unfortunately, it seems you really don’t have “The Right to Try” until you’re at the point of no return.
Bingo, I watched a press release put out by the head of the WHO ( no not the rock band ) Looked upon more over as the top pinacle and well respected by the global health community. And based on that PR soon I may not have options other than re education, counciling . To put it bluntly they will squeeze the peanuts out of my M&M's .... Also insurance providers are closely monitoring my decisions based on my doctor report records,( the hand that gives is above the hand that takes ie my insurance) so I try to find doctors that are willing to work with me. I advise myself to tread lightly always mindfull I am being put in a national data base by my loving keepers- Forever. minus an EMP, lol So this IS all part of MY prostate drama. Best
I'm always curious about the fear of chemo over other treatments. Perhaps people only think of the chemo of long ago and the stories of, 'the disease didn't kill them, the chemo did'. None if which ring true anymore. So many in this site had great results with chemo and less side effects than many of the other treatments.
That’s why I like this site because people come forward with their experiences. Someone to hold the proverbial hand and say look at me I’m doing great and nothing to fear but fear itself. And the others who can’t because they have passed.
Yah and the prick had the gall to tell me that to visit this site doesn’t make me qualified to make my own choices. How dare he insult you all. Major prick.
Now back to watching “ The Good Doctor” and his drug addiction. 😱
Hello, Flydoggy’s wife here, my husband passed away in June and I’m not on here much anymore but I saw this and felt compelled to post a response. He was in a clinical trial comparing Lu177 and chemo to determine standard of care. His cancer was aggressive and he was randomly chosen for the Lu177 arm of the trial and it did not work at all. He was then transferred over to the chemo arm of the trial and it stopped the cancer in its tracks. He decided to stop after 6 treatments, with great result but nasty side effects. Unfortunately, the cancer came screaming back after he stopped and it wasn’t long before it got the best of him. Don’t mean to be a harbinger of doom but I hope this helps. The docs wanted him to continue the chemo until they could put him on a lower maintenance dose but he refused. Good luck🙏
He did get genetic testing and it didn't help. His Oncologist told him they were finding the Lu177 treatment more effective with the less aggressive cancers. We were intially pretty pumped to be chosen for that arm of the trial but it didn't have any effect at all on the aggressive type he was fighting. Sometimes I wonder what would have happened if we hadn't wasted that time with the Lu177 - he was pretty weak by the end of that treatment - if they would have been able to get him on the maintenance dose of the chemo and extended his life...but, hindsight and all that. He had a beautiful death and there were so many blessing that came to us over the 8 1/2 years he fought this demon...trying to lean in to that. Wishing you all the best out there. This is not for sissies!
The reason I like the Lu 177 is what I’ve read as well this graphic of 8 men with 8 different cancer intensity. Left the cancer lit up, results after completion and at bottom the numbers before and after.
Your oncologist "firing" you for deciding on another treatment without an adequate explanation of why one will be effective and the other will not for your condition, is ridiculous. I have had this conversation with my oncologist recently for future treatments and she just noted it but was unphased. On the other hand, if the recommended treatment is rejected, even knowing it is highly likely to be ineffective, I can see how an oncologist would feel like they are wasting their time. The key is having an open discussion of treatment options, including with questions and answers about the suitability for the treatment for your condition and stage of disease.
I don't disagree with the premise that chemotherapy is much less effective for PCa but some studies have shown its use with ADT(stampede study) early on can be beneficial for overall survival. I followed the Stampeded Study protocol when first diagnosed. My own experience was that my PSA went up rapidly after finishing the chemo and stopping teh ADT. It also has caused my skin to age prematurely, neuropathy and I think has made my GI issues worse.
I believe the article link you attached is very one sided and makes broad statements about chemotherapy for all cancers without distinction. I don't know if doctor's get paid more for chemo or not. I do believe that pharmaceutical companies are still for-profit companies that will not cure cancer, as it is not in their best financial interests. However, they will help us live longer and "manage" the disease. The longer we live, the longer we pay for their treatments, so that's a plus.🤔
As a business model, it makes no sense to spend tens of millions of dollars to develop a treatment that ultimately removes the patient from their customer base. This is just the way a capitalist system works within the healthcare environment.
I hope you find a more compatible oncologist soon. Good luck.
Yes, but now we are a toxic-capitalistic society. Companies are much, much larger and CEO's and shareholders call the shots (no pun intended). We're not in Kansas anymore.
Yes I have a new MO and highly rated. My appointment will be next week. When I was told to find a new provider the next day I got my records to send to the new MO and got a copy for myself.
I read those records and I was addressed as patient. In the first sentence “patient 78 years old” I’m 70.
As I read it was a very bewildering moment as statements didn’t make any sense as did the age 78.
I then asked the wife to read what I just read as she was in the room with me and she looked at me and said half of what he has stated never happened. I had to agree.
The day I was contacted by phone the nurse who called to give me stated she had some bad news. I asked her does this happen often? She replied that it has happened 3 times in the last 3 months. She was very apologetic. Because we were all in good spirits before the doctor came into the room. He had every right to turn away as nothing says the doctor must take on the care, but is required to find a new provider or send your records to the Dr of your choice. That was done. I found my new doctor in Las Vegas and they expedited the records. But what isn’t allowed to be posted is distorted information or getting the simple facts like my age wrong. Way to many distorted facts as what was said in the room. I’m strongly thinking about going to the state and file a complaint. Let them figure out what happened. I’m done with him but just want him to edit the information that he reported. Because it’s wrong.
Man I can relate. When your treatment seems to run off the tracks and your doctor seems wholly indifferent, the stress and anxiety can be physically and mentally debilitating. Hope your new arrangement is a good match for your needs.
Had them send my records to my new MO and they gave my phone number and address as Wichita, Kansas. I live in Arizona. Was wondering why no one was scheduling my appointment so I called. Then when I got that corrected they gave me the appointment but the wrong doctor. And that took an extra day. It is Weird…
That sounds bad. I am sorry you had to go through that. Charting is an essential part of practicing medicine, so that everyone is working from the same information. More importantly, it is used to make treatment recommendations, track progress based on your history and to make medical assessments.
Hopefully your new oncologist will suit you and have his or her act together.
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