My husband traveled to Turkey mid-January to receive Ac-225 after Pluvicto failed. In spite of high PSMA uptake and no discordance, treatment failed as the widespread disease burden was too great. His liver mets in particular has grown exponentially since August when it was first seen immediately prior to first Pluvicto. (He had Pylarify scan plus MRI and CT in July 2022, and no lesions were yet seen in liver.)
His disease has continued to progress since his Ac-225 treatment just 6 weeks ago, and he will receive no further treatments in Turkey. (By the way, he tolerated treatment well with no dry mouth!)
Currently he is weak, having difficulty eating, and his Hgb has been low at 7.5. He has minimal to no discomfort and is not yet ready to give up on treatment. He would love to enjoy a few more months at least.
His Guardant 360 does show a CHEK 2 mutation which would make him eligible for Lynparza. He also has a high TMB of 14.35 which makes him eligible for Keytruda.
He is also willing to try chemo, again, as he has always tolerated it well. We do understand that it could be more difficult due to his current weakened condition.
I turn to this knowledgeable group for suggestions on where to turn next. Would he even be eligible for a clinical trial in his weakened state? Is there any hope for Lynparza or Keytruda giving him a reasonable QOL? Can he take both at the same time? Or should he try chemo?
Any and all input is appreciated. We will travel if necessary, although it’s a bit more challenging than it was.
Tall_Allen, do you think he could still benefit by a consult with Tanya Dorff? Where do you think we should turn?
Thank you in advance, and thank you for all the support, advice, and caring that we have already received from this group.
Written by
leebeth
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Thank you. It appears that if we can’t improve his nutritional state, he won’t be eligible for any trials. His cancer is advancing, but more alarming is his inability to eat. He finally has had two days with no vomiting. (When he did not take the Compazine, Zofran or Reglan.) He is on dexamethasone to stimulate his appetite but it’s not really working.
After reading the criteria for trials, I don’t believe he will be eligible. Heartbroken.
leebeth I am saddened to read the above from you. This happens sometimes that someone I remember quite well here has a reply buried in a thread and I miss it or in this case almost miss it.
I think of you as so well put together. So much common sense and intelligence in your extensive research and decision making for your husband. Truly remarkable.
Your husband and you are in my thoughts. I hope he can pull thru and get some more decent time here.
Thank you so much. He is really declining, in large measure because he won’t eat. He tries but finds the texture unappealing. He is drinking a lot of fluids, but he finds the protein waters to have an aftertaste and the shakes too thick. He has been eating peaches in thick syrup, and strained fruits. We also found a jello that is very high in protein and he likes that if we freeze it first!
He is in no pain.
I thank you for your kind words and support. I am a nurse, and this is the most difficult thing I have ever done. Based on the criteria for all the clinical trials I have researched, he is just too sick to qualify. It’s been so sudden…really the past two weeks. 💔
Really sorry to hear. The first couple times reading thru I missed your comment about no pain standing out by itself. Thats a blessing.
I've experienced the no appetite issue twice. 3 years ago when I was unknowingly walking the earth with fully metastasized cancer and recently when I was progressing again and also not tolerating Docetaxel at all, unlike 3 years ago. For me the gag reflex comes on strong. It can be just at the mention or thought of food. Dry heaves. And of course being wrong about thinking I could tolerate a certain food and subsequently vomiting.
This latest experience has mostly been looked at as possibly a thinning of my digestive track from steroids. 3 years ago it was seen as lymph nodes compressing my stomach. I am luckily way better now. Almost "mended" from this recent bout of no appetite.
Other than cannabis which wasn't always of help none of the 3 or so prescription anti-nausea, anti-acid meds helped.
I hope you too are holding out ok. I remember you as being a nurse. You have made some really intelligent contributions to threads.
Thank you so much! You are right; the 3 prescriptions do nothing and often it’s dry heaves. He has always had a hairpin trigger on that gag reflex! Motion sickness, etc.
The decline in 2 weeks is just shocking. I hope he remains pain free. He has not been impressed with cannabis. He is taking Decadron which is helping with his scanty intake.
Hi Lee BethI'm just wondering did lu work at all for your husband? My husband has had two doses of lu177. Psa has dropped from 600 in December to 20.1 last week. Scans today to show if it working on the cancer which I'm hoping will be positive. I'm just wondering if it stops working or if he manages to have six and is able to tolerate it all what is the long term with lu177? Does it continue working or like chemo will we be back to square one again when it finishes?
My husband’s PSA continued to climb while on Pluvicto, although at a slow rate. Now, since stopping Pluvicto and starting Ac-225, his PSA has skyrocketed to from 109 to 843. Scans showed improvement in some areas but new areas popping up. Interestingly, he felt better clinically immediately after each dose. That only lasted 4 weeks though…not the 6 weeks to the next dose.
My 82 yr old brother has had a great response. He has had one dose and his PSA dropped from 124 to 40. His second dose is next week.
Nothing works forever. How long it works will be determined by your cancer’s aggressiveness and other factors. With luck, it will last a long time.
Some men stop cancer in its tracks for years with triple therapy, and remains hormone sensitive. Others become resistant within months or weeks.
We have not been that lucky. Everything he has tried had failed. He has had xtandi radium 223 chemo twice and now lu. He felt great physically after the first dose..a fantastic improvement qol but gone backwards a bit after dose 2. Thank you so much for your response and good luck to you both with whatever you decide is next. It's a difficult road🥰
Hi, Let me throw this in. Contact Ishita Sen at Fortis Delhi. While she is nuclear medicine there is an immunotherapy available in Delhi where some of our members have gone and gotten results when they were out of options. I am pressed for time now but will search back to find some of the people who underwent this therapy. My tumors are bone only at this point and I would not qualify for this treatment as they would have a difficult time getting a biopsy however that would not be the case in your situation. Dr. Sen is very responsive and will direct you to the proper department. There is also a clinic near Fortis that specializes in this procedure. She would know their name also... It was my understanding this therapy was initially developed at MD Anderson Houston but I cannot verify this at this time. This was from an oncology nurse and Anderson who passed this to me....
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