My 70 year old husband was diagnosed this June... spread through bones/skeleton, pelvis, ribs, spine, skull, lung, lymph nodes. Started on 3 Firmagon shots and was switched to Lupron and he's taking Darolutimide (Nubeqa) and has had 2 Docetaxel treatments so far. PSA started out at 57.7 and went down to 1.27 on 9/20. His most recent blood work on 10/11 his PSA rose to 7.96. His doctor said he saw this PSA number and was not sure how to interpret it. He said sometimes the PSA rises as the cancer cells die and release it into the blood. He thinks we should continue with our current strategy and then recheck PSA at next chemo treatment on 10/25.
Just wanted to reach out to this group for their expertise.
Thank you so much... from a worried wife! ❤️
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Izzygirl1
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yes, all my bone mets resolved on ADT (Degarelix) alone according to the new 68GA PSMA PET/CT scan from last week.
i just hope that my cancer did not convert itself into a PSMA negative cancer which is not visible on PSMA PET scans.
i am reasonably fine but having enough of the ADT.
my PSA is doubling fast and I have urinary problems related to the PC. I have an active PSMA positive cancer with SUV max value of 14 in my prostate .
My husband has not had the PSMA scan. He had a bone scan with dye. I'm not sure if he is "PSMA negative or positive"? Can I find out my husbands "SUV max value? (Not sure what that is.)
I'm so sorry your PSA is rising and you are having urinary issues. I hope that gets better soon!! ❤️
if you only had a nuclear medicine bone scan and the CT scan with contrast than you don't have to worry about the PSMA positive and PSMA negative cancer.
i had that scan as i have or had a metastasis in my neck just under my skull. I wanted to know if my cancer is in my spine and brain.
it looks that I am fine.
where is the cancer in your husband?
does he have pain related to the cancer?
i have pain but I really hope that it is related to the ADT therapy side effects.
My husbands cancer has metastasized to his bones, spine, ribs, pelvis, skull, lung, and lymph nodes. He had terrible pain in the beginning and could hardly walk. The hormone shots took away his pain although he still gets some restless leg pain which I believe is part of the side effects.
When my husband started on Docetaxel and the PSA doubled from 99 to 200 after the first infusion, MOs said that PSA is not much to go by and that it can fluctuate. Sadly, my husband's PSA never declined on Docetaxel and bone scan showed progression along with symptomatic worsening, so we changed after 4 infusions to Cabazitaxel. After 2 infusions of that, PSA is still rising and scan is worse. We have been told to do at least three infusions and so my husband will do them. In the same lab, same day bloodwork has shown my husband's PSA reading that differed by 23 one time and 145 the other. In your case, given the PSA response to the first one, you should not interpret it badly yet just because of the second one.
T_A said that PSA can vary by 20% so it is not an entirely accurate thing, perhaps more so at the higher numbers. My husband is not feeling great; until there is pain, things are tolerable. As soon as pain comes on the scene, there are painkillers incl steroids and morphine based ones which bring their own side effects. Soon it is not clear what is making the discomfort where.
I hate seeing my husband in pain and just dread it, as I'm sure you do too. I'm sorry your husband and all the other men battling this horrible disease have to deal with so much. And everyone's journey is so different. I just never know what to expect and take it one day at a time.
I agree. He is brave really putting up with what life is giving to him but insists on looking after the family 'while he can' as he puts it. Breaks my heart.
hello, I had chemo last fall. My oncologist told me that he does not like to check the PSA until after the 3rd infusion, because it can rise first, then come down. My came down. I would keep on the path that your Dr has you on. Your results may be different than mine. It is hard not to worry, at what is happening.
I've read that some oncologists don't even check the PSA until after chemo is over. I guess I would rather know what direction it's going in. I'm so glad yours went down! "Worry" is my middle name!! Thanks for replying.... I hope you are feeling well. ❤️
Similar situation here. PSA rose 5 pts to 92 after second cycle. It had decreased initially. Feeling pretty discouraged as you must be. MO says retest next week. He tends to stick with treatments longer than I feel good about, but he’s kept DH up and going for the last 7+ years.
doing ok-Psma scan next Tuesday. PSA is climbing about a point a week. 2/3 of the way thru chemo. We’ll see what direction MO wants to go at appointment Thursday. Hope you’re doing well
Sounds like the right course. Many treatments take time to show stable results. Some people see immediate, then a bit of relax, and then stability. It is the reason for frequent tests, to give baselines and progression curves.
No matter the treatment, your husband has a tough road ahead. Current treatment as Allen writes appears to be the best standard of care available. How he got into his predicament is spilt milk. This bastard disease hits hard; especially if PSA is not routinely monitored.
His scope of disease with a Gleason 9 and wide spread metastatic lesions is completely different than mine and many others. Three important factors in his treatment are body strength, tumor burden, and co-morbidity issues.
Even after annual PSA testing for the ten years prior, I found myself with a Gleason 7 and still metastasis. Though it may seem antidotal, I’ll share my early history: Note dates, Blood draw results (I had blood draw prior to every infusion), and ADT during chemotherapy for my early years. I am 75 years of age today and reached undetectable in the fall of 2006. If dead cancer cells increased my PSA, I am not aware as my PSA was surpressed by ADT along with the chemotherapy.
Tumor burden is a descriptive term. To me it means identifying metastatic lesions early. Staying on top of rising PSA and expected development of cancer in ones body. For example, I had two metastatic lesions in my spine identified and started treatment for advanced prostate cancer; ie, the spread of metastatic to other areas. As opposed to finding out about advanced prostate cancer late with widespread metastasis or finding out and not having systemic treatment for whatever reason - lack of health care, ignorance, insurance, malaise, etc. and, some mean just don’t want a finger up their butt. However, an excellent physician can feel a prostate to determine if healthy.
There are several methods to determine metastatic prostate cancer. One, is through initial nuclear bone scans with corresponding soft tissue CT scans. A base line can be established for comparison. I have had 26 sets. It’s an old yet true method of radiography. There of new types of scans which I have very little knowledge. Like the PSMA scan which, as I understand, measures tumors that express PSMA. There are others developed since I was first diagnosed.
I am not a fan of the USPSTF recommendations. I have had annual a PSA screenings since I turned 40. I am 75. In 2001 my PSA was 3.5. In December 2002, it was 6.8. Confirmed prostate cancer through biopsy in March 2003. Confirmed Stage 4 metastatic in May 2004. By this time, my fourth nuclear bone scan and paired CT scan confirmed.
I admit that I am biased. I rely on myself and physicians for my health care and not any other agency, be it insurance rules or government recommendations. My hear goes out to those who “discover” their cancer late in the game or who have a very aggressive cancer through not fault of their own. Mutant runaway cells are all bastards in my vernacular.
I apologize if I look the long way around your query. Rejoice in that modern treatment is available in today’s world. And, I will get better. Stay positive. Tall Allen is up to date on the latest clinical research available. He can point you and your oncologist to studies and available treatment.
My husband has a very aggressive form through no fault of his own... he had his prostate and his PSA checked every year and it was always normal until this year. Primary doctor thought he had a tick borne disease or full blown cancer. It was his rheumatologist who ordered the correct tests and told my husband over the phone that he had advanced stage prostate cancer. That was in June and we're doing everything the oncologist tells us to get my husband into remission. I am scared to ask if some people don't get into remission?
Not sure why changed from Firmagon to Lupron? That could have caused the recent PSA jump which should be temporary. My radiation oncologist advised me that he believed Firmagon is better than Lupron for PC after I asked him about Lupron since the shot was in the butt and quarterly instead of monthly.
Thank you so much for replying. They changed him to Lupron because oncologist said results would be the same and it would be more convenient for my husband. He gets his next shot in February! I hope you are doing well. ❤️
i noticed your husband started darolutamide. I got a PSA bounce from 0.39 to 2.27 within 4 days after starting daro. a month later PSA dropped to 0.74 abd 2 more months later PSA dropped to 0.14.
Hope his psa test shows a reduction in the numbers. I am lying wide awake in the paliative care department in a hospital in France whist hubby is on a morphine and ketermine drip due to pain in his bone Mets. Will be here until 4th Nov at least which is when he has an MRI scan to see if met/s can be treated with radiotherapy to ease pain. We have blood test next week to see if psa has gone down from 150. Started xtandi a week ago after psa rose from Nadir of 1.42 to 150 whilst on chemo
Hubby had ct scan yesterday morning then mri scan in the afternoon. Doc said he canno even walk to the loo and must stay in bed until they either operate/rádiate met that is causing the pain. Specialist arrived this afternoon to take measurements for a corset. They had to double morphine and ketamine him so he could stand just for 1 minute. Corset will be with him by Monday or Wednesday at the latest. He will keep this on until everything is sorted. All of this on top of just starting Ztandi 10 days ago. Looks like we are in hospital for the next 3/4 weeks. At least I have a bed and I can stay with him 23/7. How are things going with you both
Sounds like he's on the best course of treatment currently being offered. Best not to look at PSA for the first 3 cycles of chemotherapy.
If his PSA does continue to rise in conjunction with progression on imaging, he might discuss switching to second-line Cabazitaxel chemotherapy with or without Carboplatin or consider LU-177 PSMA.
Has he had a biopsy to look at the cancer's immunohistochemistry? That might give him a better idea of what treatments would be beneficial. Genetic sequencing can also be done to see if there are variants such as BRCA1 and BRCA2 that have targeted treatments available.
Thank you so much for replying! He did have some genetic testing done at Sloan Kettering and through Hartford Healthcare but no variants came back that I know of.... but I am going to ask about that!! I hope that you are doing well ! ❤️
Good News today!!! Blood test results came back today and PSA is down to 3 and Phosphatase is down to 464. So grateful numbers are going in the right direction!! Hoping others here have gotten some good news this week!!!!
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