After spending the first half of the year in the Vision trial and having great results the beast is knocking on the door again. After lowering my PSA to a low of 0.43 in May it creeped up to 5 in August and my right hip and 5 th left anterior rib showed significant activity that we treated with SBRT. Three weeks later a bone scan reveled a cracked T12 vertebrae so a cryoplasty was done and I felt great. Two weeks later on a vacation I fooled out of bed and had excruciating pain. Two MRIs later reveled and abscess on my souses muscle which was drained, however my back is still very sore several weeks later. Then to finish the fun my choline PET scan showed new Mets to my lungs and left femur. So back to chemo for me ( what a great Christmas present). While I did get down on myself and had a pity party, I also thought about the many blessings I have. Between my wonderful wife and great support from friends and family, I know I will get through this next challenge. My biggest hope is that my hair grows back in time for my daughters weeding next October.
Stay strong and keep fighting!!
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Jackpine
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Hi there Jackpine - I’m sorry you have been in the wars over the past few months and hope your chemo will really help. Which chemo are you getting? A cold cap can help you not lose your hair if it is a taxane - also you are not alone- my husband is having carbazitaxel tomorrow and 2nd treatment on Christmas Eve- I’m hoping that the accompanying steroids will help him get through- fingers crossed for you too .
I will be taking Taxetere again. I will make sure to use a cold cap and keep fingers and hands cold. First time didn’t do the feet and ended up with euro apathy
Hi JP, We follow you closely you may recall. Sorry for what you have gone through but we know you’re one tough guy.
You can always consider a wig if needed. I saw a guy yesterday with a Rod Stewart blonde mullet wig that was soooo sexy.
I hate to say it because I don’t want to jinx it but my guy is having success with Zytiga and Fenben. Might not hurt for you to try the dewormer. Doesn’t seem to hurt.
Hope your guy is doing well. I like the Rod Stewart idea I was thing Elvis as well. I think my daughter would die if I did that to her on her wedding idea but could make for some great pics.
Did your oncologist OK the fenben with Zytiga, or did you, like us, do it without his OK. The minute we started the fenben, my husband's PSA rose 2 times. I panicked, and made him stop taking it.
Have any of your recent mets been biopsied? I'm thinking that if, say, the lung met is BRCA1/2 +, you might benefit from adding carboplatin and continuing to a PARP inhibitor on a clinical trial.
I just did the BRCA test last week so should have results in a few weeks. Once we have that information our plan of attack will be modified. I very much appreciate the information.
I don't know if you can do R-223 after Lu-177... Probably not but it's worth asking..Also BAT is worth a try if you can find someone to do it..If chemo (yuk) is it, then maybe trying a carboplaten - cabazitaxel cocktail might work better than either one alone..At this point, you gotta think outside the envelope, sometimes way outside....Trouble is, few MO's will try strange things... Estrogen patches maybe ?
I'm in the Vision trial, just completed cycle 4. And like you, it's working very well. Also like you, I'm wondering what comes next......Hang in there Brother, Best of luck..
In Australia, it appears that Lu 177 is failing after about 12 months after fourth injection. They are all using the J617 ligand. My brother has done very well until 5 weeks ago when his PSA accelerated from under 1 to 105 in 4 weeks; to 315 in a further 10 days and now to 765 two weeks later. Present in hospital as he has lost use of one leg due to SBRT on T5/T6 spinal tumour. He has been too weak to do Docetaxel, but on bicalutamide and dexamethasone, he is recovering.
I have reviewed J591 a peptide produced by Telix Pharmaceuticals that is offering at least three times longer OS. Trials underway now and more next year. Looks very promising.
I hope they can get your brothers cancer back under control. That is a significant rise in PSA. I only got about 5 months from the LU177 so let’s hope new trials give us better results.
First I wish you continued success on the Vision trial. My Onc will support going out side the box. Once we have the genetic testing done we’ll hit it hard once again.
Oh Jack we are so sorry to hear of the return of the unwanted cancer. You have been a step ahead of my husband in the vision trial. He finished in August and is still undetectable, but watching closely.
I know the Lut-177 gave you some relief for a time, and that is something to be grateful for as we are as well. Supportive family and friends are the medicine to keep your spirits up. May God give you strength as you continue to battle this beast.
Thank you for continuing to update us.
CJ
Hi Jackpine, just last Wednesday (the day before Thanksgiving) I was advised to start chemo...I too start before Christmas. Not the most ideal time of year, but then again, when is a good time? I wish you the best, and Merry Christmas!
Would you consider going abroad (Germany or Australia) for combined 225-Ac-PSMA and 177-Lu-PSMA treatment(s) if those sites still light up on a Ga-PSMA PET scan?
First I like your location better than mine since we got hit with 18’ of snow over the weekend.
I 100% agree with you I need to wear it courage. I know my daughter was asking me over the weekend if she had to move up the wedding because of my health. I told her no need as I plan on walking her down the aisle.
For LU177 I did six rounds as part of the vision trial so I think I need to give my body a break from radiation for a while. But as time goes on I may have to make the trip to Germany.
Better than 2 steps forward and 3 steps back... If you're bald during your daughter's wedding just ask the wedding photographer to airbrush hair on your head.... Maybe different styles and colors for different pictures...Add a little pizzazz to generally boring wedding albums.....
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PSA RISING
Oligometastatic PC and Radiation
Next Treatment Step
Scans 16 weeks into Lu 177 (2 infusions)
Update from my husbands SP Aug 2
