I am reading this forum every day and getting very valuable information. Thank you so much. My hats off to all of you for sharing your experience and knowledge over here and providing much-needed compassion to each other.
My Case:
Age 73. First diagnosed with advanced PCA in October 2019.
Biopsy results: 5 of 12 GS 10, 2 of 12 GS 9, and 5 of 12 Benign.
PSA 3.5.
Scans Results: Only one Met Increased uptake in S1.
Genetic test: negative
My case was reviewed by three MOs and it was concluded that although I have a high Gleason score, based on CHAARTED and LATTITUDE I have low -volume low-risk disease (no visceral involvement, 1 site of bony disease). So it was recommended to follow the STAMPEDE trial.
Treatments:
1)Lupron shot every 3 months effective December 2019.
Less uptake in S1. No evidence of new bone metastasis disease.
Bone Scans 03/19/2021
Tracer uptake associated with sclerosis in S1 Slightly less pronounced compared to the prior exam. There is no new focus of tracer uptake suspicious for new osseous metastatic disease.
Side effects due to ADT: Very little. No Fatigue, no hot flashes, no weight gain.
LifeStyle:
Exercise: Walking 5 miles/day + workout with a trainer
Diet: Plant-based + Fish every other day
Questions:
With these results shall I go for scans every 6 months or every year? One Oncologist says 6 months, the other says every year. How about PSA testing still every 2 months? Thank you to all of you.
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Pheart2
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I do not think you are cured. A PSMA PET/CT will show additional lesions the bone scan cannot detect. You have a Gleason 10 which puts you in the very high risk group. I get a PSA test every month to monitor my tumor closely. So I would keep the two months in your case. Also, you may want to get a PSMA PET/CT instead of a bone scan to get a better understanding where your tumor currently is.
I didn’t say I’m cured but according to Doctors it has gone into remission now. At least let me enjoy beautiful sunny day today rather worrying about snowy bitter cold day of next January.😀
This does not apply if he does ADT. ADT reduces the PSA value but not the PSMA expression. ADT shrinks the tumor so you may see less with a PSMA PET/CT though.
My understanding, as is that of my MO at MD Anderson is that PSMA Pet-Ct scan resolution is very poor unless you have a significant PSA expression, at least 0.5. This is clearly shown in a chart in the following link:
PSA and bone alkaline phosphatase every 3 months + normal bloodwork. For most people, an increase in those would trigger a new bone scan. But because you have a low PSA subtype, it's prudent to have an annual bone scan/CT.
If insurance covers generic abiraterone, it's best to have 1000 mg without food - that way you can be sure the proper amount is absorbed. I'm sure you are taking 5 mg prednisone/day with it.
Thank you Tall_Allen. Yes, I’m taking 5 mg Prednisone. Matter of fact I started with 1000 mg but saw your post on one successful trial of 250 mg with low fat breakfast and Oncologist agreed so I’m on it since June 2020. Since PSA is understandable he let me continue with it. Thx for information on frequency on Scans.
The only reason to take 250 mg with a fatty meal is to save money. However with low-cost generics, that may not be at issue. If you can afford it, it is better to take 1000 mg without food- you know what you are getting.
Saving money is not an issue. Insurance covers the cost. I thought 250 with low fat meal would have less side effects and same benefits as 1000 . I’ll discuss with Oncologist again. Thx.
Side effects are a result of the dose absorbed, not of the dose you take by mouth. Increased absorption leads to increased side effects. You can increase absorption of abiraterone by having fat in your gut when you take a dose. I'm sorry that anything I wrote led you to such an erroneous conclusion. If there were lower side effects, I certainly would have said so.
PSA and ALP every month and bone scan every 6 months is a great way to monitor your type of PCa. My definition of CURE is that you stay in remission for such a long time that you die of some other cause. Everyone has to go some day...including the once who do not have PCa or even so called "patient advocates" death is inevitable and incurable condition for entire human race.
You are right about the same side effects. My bad.
The following are my conversations with an Oncologist who is also a Professor at the University of Pencinvlania. I always check with him prior to starting any treatment.
I asked him in May 2020.
"Thank you, Doc. One quick question. My oncologist wants me to start taking Abiraterone 250 g with low-fat breakfast instead of 1000 mg without food. Based on a study/recommendation published by NIH. I would love to do that but thought to check with you first. Thank you for your time. I came across the following clinical study.
"Yep, that is totally acceptable. There was a good study supporting this. It's appropriate to do it either way.
The idea is to get the same drug level in the body, but less drug. So taking it on an empty stomach 4 pills should lead to a similar drug level as 1 pill with food. So not sure it will mean fewer side effects, unfortunately, but definitely a fine thing to do.
Take care."
Since drug efficacy was the same in both scenarios per study I changed to 250 mg.
Thx TomTom. That’s exactly I’m going to do. Blood test every 2-3 months and Scans every nine months unless blood tests show something abnormal. Not to cut cost but to cut anxiety. Just like someone posted before, anxiety over the future is robbing us from enjoying the present.
We only mention the word "cure" here when we're talking about pickles..........
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 04/19/2021 10:21 PM DST
Scans yearly , PSA tri-monthly is what I’ve been on for six years . I like everything that you’re doing. Especially the diet and 5 miles per day . Keep up the great work . Live well . 👏🏼👏🏼🏋🏻♂️
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