Latest on IRE Nanoknife Focal experience
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Well, I spoke with doctor today and he has prescribed Casodex immediately. He's arranging for an appointment with a Fox Chase medical oncologist asap. Can't say I'm feeling too positive, but it is what it is. My doctor is very professional and caring. He tells me due to the low volume indication in the nodes that there's still a slight chance of cure with zapping them with radiation along with the hormone drugs I will be prescribed. I'm imagining this as wishful thinking? He also told me that if I had opted for RP or RT instead of Focal, I would have likely still be in the same boat. Because of the typically slow progression of Pca he concludes that the cancer was already in the nodes of the aortocaval region, only too little to show up on the first PSMA PET scan.
My lousy journey continues!
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Sorry to hear that, shipmate. On the not-completely-**** side, you avoided the worst side effects of RP or RT while ending up in the same spot.
The leaps in bounds in medical technology for PCa continues apace. A lot of guys on this forum have lived a long time with similar diagnoses. Keep on keepin' on…
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Maybe not on the RT? My surgeon spoke with one of Fox Chase's Radiologists whom thinks it not a bad idea to do the 5 week ( I think IMRT) radiation of the prostate along with whatever cocktails the medical oncologist will advise. He's hinting at perhaps still a chance at cure. But at what cost? The side effects from these modalities sound pretty scary, which my Focal journey was attempting to avoid. Took the first Casodex (bicalutamide) tablet this morning to start shutting down my testosterone. Haven't felt the urge to slip on a dress yet! Lols! Anyhow, two more appointments on the schedule to speak with the new doctors.
Yes, some of the forum guys are amazing how they keep fighting. I hope I can follow their lead. Sure would like to have more time to influence my grandson and granddaughter.
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Seems like your IRE got the bad Gleason 4 cancer out of the prostate, but you had some Mets that escaped prior. Your actual bad cancer load should be light? But it is spread around a bit in your lymph nodes? Suggests that between the HT and targeting those specific locales, you have a long run of containment ahead of you. In time, Pluvicto could move to a primary therapy too.
Keep your speed up @swl1956 , and keep living your life, shipmate.
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Wow, thanks for reporting your story in such a detail. I wish you success in your next steps.
I want to congratulate your team of doctors for choosing the F-18 PSMA - Pylarify tracer in the PET exam. I think this tracer to be better than the 68Ga to identify lesions in the prostate bed area.
Probably you need now to get biopsies of those identified spots to clarify the presence of metastases.
Best
VG
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Hi Vasco,
Thank you too for the multitude of information you've contributed to this forum. You are an inspiration to many of us here. My doctor hasn't suggested yet biopsying the new spots. I'm not even sure that's a option? He did seem pretty confident that it was no false positive after reviewing the scan and report thereof. He seemed to be favoring a 5 week course of RT along with hormone treatment to attempt to nip the bandits in the bud. All very scary at this point for me.
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swl1956,
Experienced radiologists (and several other oncologists) trust their interpretation of the scan images and tend to advance on their judgment when advising a treatment.
In PET exams they use SUVmax considering any SUV above 7 as cancerous if such is detected at apropriate regions.
Judgements in lower SUV become ambiguous and could generate false negatives.
This could have been the reason in your case for the existing node metastasis being there at the beginning but not reported as cancerous. A biopsy comes in hand when doubts arise on a spot. However, many lymph nodes are located in places of difficul access, so the tendency is to radiate instead of dissecting. Surely the intervention of an urologist would be required.
I trust the radiologist reporting the exam this time as he has gone in details comparing all exams. Probably the IMRT modality was chosen as the area to be radiated is vast. I think that the protocol will include the prostate bed, the lymph nodes and the urethra even if the SUV at this area (6.5) could be a cause of excreted urine.
Well, so far you have chosen the best way to handle your case. I also give high credit for the quality of life whenever such is possible.
We all are scary when dealing with the unknown. My IMRT of 2006 was also for 5 weeks. Each section took only 10 minutes so that doing the treatment in facilities close to home is better. I found that drinking loads of water one hour before avoided some injuries from the RT.
I recommend you to discuss with your doctor the means to protect against radiation side effects.
Wishing you luck.
VG
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Update:
I've been on bicalutimide (Casodex) for about a week now. So far little side effects, except having some bouts of flatulence.
Had appointment with Fox Chase medical oncologist yesterday. She was very nice and knowledgeable. If I understood her correctly to start my ADT the Doc gave me the choice for step 1 of Orgovyx pills or Eligard injection. I choose the Eligard which my first shot is scheduled next week. She mentioned that Orgovyx might have a high copay and that the bicalutimide eliminates the testosterone spike that occurs with Eligard? She indicated that they perform about the same. After reading a bit, it sounds like Orgovyx might have some other advantages? I'm uncertain if I made a good choice? Anyhow, she said step 2 will be taking four Zytiga pills and one prednisone and likely doing all of these for a couple of years. I don't see the radiologist until middle of next month. I understand it's advantageous to beat the bandits down a bit before nuking them. Does this sound like a reasonable standard course of action? I just feel anxious about these periods of time between actual treatments is where those little bandits are eating me alive. 😓
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Update:
Been on Bicalutimide (Casodex) for almost a week now. Haven’t noticed any effects except some bouts of flatulence.
Had an appointment with Fox Chase medical oncologist yesterday. Very professional, she’s offered me a choice for step 1 of Orgovyx pills or Eligard injections. She mentioned that Orgovyx can be cost prohibitive and the Bicalutimide will prevent the testosterone spike known with Eligard. If I understood her correctly indicating that they were comparable options. I choose the Eligard. After reading a bit, it sounds like Orgovyx may have some other benefits? Now I’m second guessing myself. Any opinions on this?
Step 2 is four Zytiga pills and one prednisone. Sounds like I’ll be taking all of these for a long time. Perhaps 2 years. I don’t see the radiologist until middle of next month to discuss his plan. Likely IMRT for 5 weeks. I understand there’s some logic to weakening the bandits before nuking them but all this waiting between treatments is stressful. Seems like too much time for the bandits to eat me alive.
Geez! This stuff can be all consuming.
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Casodex is standard of care prior to Eligard.
Orgovyx doesn't cause a testosterone flare; hence Casodex isn't really needed.
There are some advantages when comparing Eligard to Orgovyx: here is what I remember (!)
Orgovyx acts faster and the effects dissipate more quickly; this is not relevant because you will follow up with Zytiga.
Eligard injections have to be done by a skillful nurse. Taking a pill is easy, but the patient has to remember…
Orgovyx may be a bit better with respect to cardiac issues.
Eligard isn't cheap, but Orgovyx is even more expensive, depending on insurance.
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Thanks Old Salt! Sounds like I'll be OK with taking the Eligard shots. The Fox Chase Docs and nurses all seem very professional. Maybe I'm naive, but I feel like I'm in good hands there. I must admit, I'm very worried about the side effects from these drugs and then the radiation treatments to follow. Sometimes I wonder if I didn't do any treatments at all, might quality of life be better even if it's a shorter amount of time?
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