I was lucky to have an appointment at the VA on July 21..because The day before a small bump on my left rib appeared suddenly..like what seemed overnight...it WAS small and now they are everywhere!
The VA oncologist wants to wait until August 4th to get a CAT scan and biopsy before he starts chemotherapy.
I think should start now!
Since May 8th, 2018:
Zytiga 750 mg/5 prednisone
Lupron every 6 months
Highest PSA EVER!! 3.6
What’s now guys? Help me out please
That's only 2 weeks away. Good idea to get a bone scan/CT and biopsy. Why only 750 mg Zytiga? Maybe switch to dexamethasone in the meantime.
Instead of prednisone?
Good advice
The 1,000 of zyitga was to strong for my liver would liver...
Gotcha
Dean, with a low-fat meal, some men have reduced the zytiga to a single 250 mg. tablet. Google this issue and you will find numerous discussions,
You could talk with your MO and change prednisone for dexamethasone 0.5 mg/day, which could make zytiga to work for a while.
pubmed.ncbi.nlm.nih.gov/300...
Then get the biopsy and if there are specific mutations in the cancer you could qualify for olaparib, rucaparib and/or keytruda.
You could also discuss the possibility of getting a PSMA PET/CT (Ga 68 or 18F DCFPyl) , there are clinical trials for these studies:
clinicaltrials.gov/ct2/resu...
clinicaltrials.gov/ct2/resu...
If the metastases express PSMA then you could consider a Lu 177 PSMA treatment instead of chemo or other anti androgen. It is not the SOC but Lu 177 PSMA most of the time does not have major side effects and could control the cancer for a while.. There are also clinical trials for Lu 177 PSMA:
clinicaltrials.gov/ct2/resu...
If the clinical trials are not adequate for your situation, the PSMA PET/CT can be done at UCLA paying $ 2800 and the Lu 177 PSMA could be done in Australia or Europe if it is feasible financially.
There is also the possibility of doing a clinical trial with modified niclosamide which could resensitize the cancer to abi or enza again. They had some good results in a previous limited trial.
clinicaltrials.gov/ct2/resu...
health.ucdavis.edu/synthesi...
Discuss the possibility of doing Provenge as soon is considered possible.
Best of luck on this journey!!.
Hey Tango, is Australia allowing Americans in for medical treatment with Covid running wild here...? and for a side note my OC at Duke was involved with the clinical trial there at Duke (Lu-177). She was really pumped about the results...I am going to UCLA for a scan then off somewhere for Lu-177 at some point...She really prefers Australia but she admitted thats who they work with on this study. .Blue Skies ,,Sky King and Penny (woof)
Hi pilot. The present restrictions are as follows
Australia’s borders are closed. Only Australian citizens, residents and immediate family members can travel to Australia. Learn more about who can enter Australia from the Department of Home Affairs.
If you check out the videos on UroToday and look for those presented by Michael Hoffman from Peter MacCallum Centre in Melbourne they probably refer to the clinical trial that your OC was referring to. Peter MacCallum Centre is in Melbourne where COVID is a big problem at the moment but here in Sydney, where those men who aren't on a trial and pay for Lu 177 there are very few cases. Patrick Turner on this site often posts about it and I'm sure he has his treatment in Sydney, maybe at St Vincents, but I'm not sure as there is also a private hospital that also provides Lu 177. Hope this is helpful. Happy to check out anything else if of assistance.
Thanks , great info...Blue Skies
Some info to travel to Australia:
usa.embassy.gov.au/news/cov...
usa.embassy.gov.au/news/cov...
"Compassionate and compelling reasons to travel
The Commissioner of the Australian Border Force may grant you an exemption if you are seeking to travel for compassionate and compelling reasons. Compassionate and compelling reasons include, but are not limited to, needing to travel due to the death or critical illness of a close family member.
You must hold a visa and have an exemption to Australia’s travel restrictions before you travel. You can request an exemption using the form below and must provide appropriate evidence to support your claims. All documents need to be officially translated into English.
Where possible, you should apply for an exemption at least 4 weeks, but not more than 3 months, before your planned travel. If you are travelling due to the death or critical illness of a close family member, you can apply inside this timeframe and we will prioritise your application.
If you are not granted an exemption, you should not continue with your travel plans, as you will not be permitted to board a flight to Australia. If you are granted a travel exemption, you need to take evidence of that exemption decision to the airport.
Apply online for an exemption"
-----------------------
Best of luck.
I believe you need to talk with the center you want to go in Australia or Europe. I heard that for. medical treatment it could be possible to go if you agree to quarantine for 14 days. I am not sure if this information is correct.
Lu 177 Psma treatment may be more effective if done earlier.
I went to to Munich in 2016 immediately after being diagnosed with lymph nodes metastases and it was effective in controlling the metastases.
Best of luck with your jourmey.!!
Good job in Munich Tango! 🤙
Hello and thanks for all the help...Dr. Zhang had UCLA call me this am...got my flight and room on campus...they have it set up for Aug. 10th...now we can find where the monster lives....Once this is done the next step comes....Blue Skies
Best of luck!! They are very nice at UCLA. I always had a good experience with them . It takes time to prepare about 1 1/2 hour and then the scan is about 1 hour. Completely painless.
thanks....once we get results and if recommended I'm all in for Lu-177....I think all the research hospitals are super...So far MD and Duke have been great....if you let them know that SOC is fine until it begins to fail they are on board ....
It seems than Lu 177 PSMA is more effective when done earlier in the disease process, even before chemo.
snmmi.org/NewsPublications/...
If your cancer has metastases expressing PSMA, Lu 177 PSMA, is one possibility since it is a systemic therapy which is different than direct treatment to mets.
I have a similar plan and I consulted at the MSKCC and at UCSF and they supported the approach.
I’m appalled ! 😩Who wouldn’t be scared brother? A small bump now many . Wtf? That’s crazy stuff. “ Its back” is in all of our nightmares. I’m now praying for you Dean .🙏 Bravery is not the absence of fear but just dealing with it all. Hang in there guy! Scott🌵
Good luck with the scans. You are one of the brothers and we all pray for you.
Ty
Read the replies and a lot of good advice. Best of luck and I hope that things will soon take a turn for the better!!
Your doctor might want to know for sure that it's PCa before starting chemotherapy. Imaging and biospy seems like a smart approach to me. I don't think a couple weeks will matter although it's hard to wait, I know that from experience.
Based on my experiences, it sounds like you're both in good hands, and getting fine advise at the VA.
Best of luck!
Bumps everywhere ... may not even be mets. Time to just relax. Take your beautiful wife out (If you can find anywhere to go!)
Someone needs to give you a 1/2 Nelson to try to calm you down,,,, As Monti said take your wife out.... and you stay home with your girl friend 👀
Good Luck, Good Health and Good Humor.
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