Hi all - latest CT scan showed organs were clear which is good. My mets though have increased in size and there is also a new one. 3 in total that are seen. 2 on L5, 1 on pubic bone I think it is called.
Doctor thought that isn't too surprising as I am only about 40days into treatment.
Did Casodex for 30 days and then got first Lupron shot about a month ago.
Do you agree that is not that alarming or what do you think of this news?
**1st appt with MO on the 18th so excited about that (that is weird to say!) because hopefully I can get on the triplet right away**
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Yzinger
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When I was diagnosed, it was considered emergency, I had severe narrowing of the spinal canal due to mets, the beginnings of gait problems, a PSA of 1700, severe pain at night around my rib cage legs, mets also to a few lymph nodes and pelvis. Gleason 9. No surgery or radiation because it was too late. I was put on Firmagon/Degarelix and Dexamethasone immediately. Within a week my pain was substantially subsiding and within two weeks I could say I was sort of back to normal-ish. That was just the beginning.
My point is, from my understanding of standard of care, is that the two meds I mentioned which were prescribed immediately on diagnosis, are what resulted in my astonishingly rapid response.
Since then I'm on full on triplet therapy, as you know, and the dexamethasone has been replaced with prednisone. And that was 18 months ago.Bravo you are seeing a medical oncologist ASAP. Bravo no organ involvement. Maybe others can comment on the fact that since the beginning of August your CT shows that your lesions are increasing in size.
I agree with John. Yzinger - One thing to question is the differential reading on your scans if they haven't gone over it with you. Is what you are seeing truly progression or a clearer scan? It happens - slightly different machines, different contrast uptake, etc. Okay, my non-medical experiences and opinions:
I was only a bit younger than you (49) when diagnosed 7 years ago. I believe that the overall survival statistics are getting much better for our demographic, but the generalization that "younger advanced PCa = more aggressive cancer" still holds true. While only 3 bone mets is absolutely great, the "increased in size and there is also a new one" raises some red flags, and Lupron simply isn't enough (IMO).
My GP didn't go into any detail other than to explain the "new" findings and state that although not great news it could be expected this early into our treatment.
I know Casodex is supposed to limit the Test flare so is it possibly that flare still happened?
Hey, Y. It definitely could be "flare phenomenon" - this is certainly a new development since my diagnosis! It looks like you have months before additional treatment may be needed! I say "wow" even if, as this article says, "(t)he incidence of bone flare is still controversial." In other words, bone flare is real, but the actual percentages of men affected are unknown. See: ncbi.nlm.nih.gov/pmc/articl...
But caution is always the watchword! I have found that being guided through my imaging and asking about the conclusions has been invaluable. Good luck and thanks for the post!
Why wouldn't they put Y on Firmagon? My understanding it works faster. Based on lesions growing in a short period of time it would seem that time is of the essence? There isn't even an MO involved yet ... 🙄
Lupron is multi-month (3,4, or 6), while Firmagon is every month. It takes Lupron longer to kick in, but after it does, the testosterone-lowering effect is equivalent.
be patient otherwise you will stress yourself which can be harmful. I had a Psa of 5664 and pain so bad I prayed to die. Casodex for 30 days and Lupron after on Casodex for 15 days. Psa went from 5664 to 278 in a month. Bottomed out at 6 after 10 months and now we start Abi and prednisone. I recommend you investigate supplements starting with curcumin and magnesium because they are beneficial for controlling a long list of SE you could experience. Also google curcumin and prostate cancer. You got this.
I don't know if PSA numbers differ by location (I am in Canada) - but my PSA was initially 4, went to 6 which made GP think we better involve Urologist. Last PSA was 9.
I think the highest ever recorded was 23000. The type of Pca has something to do with the numbers as well as the amount of cancer. Some of the rare very aggressive forms produce little to no Psa. My scans in 2021 showed cancer in lungs and spine, left femur and pelvis. Psa was 307. When it went up to 5664 and showed two compression fractures I started treatment. No scans at that time but had an mri. I was on crutches for 8 months and bedridden, now I am prepping to go bow hunting. I just turned 73. Research and don’t be afraid to ask your doctor questions. God Bless.
These mets we speak of - is the hope or expectation that treatment will "remove" them or does it shrink them, or does it is simply stop from going further?
The hope would be to remove them. The expectation would be to shrink them. My bone scans from 2021showed uptake in areas that the recent scan shows no uptake. There is a term for this and when I googled it it said that the problem area was resolved to normal status. My ct scan used the same term for my lungs. Also, I think when the cancer goes to the bones it can affect the bones in two ways. One is a met that becomes a tumor and grows and possibly puts pressure on the spinal cord, or it breaks down the bone and makes it very weak and easily broken. I have both. I had 2 compression fractures in the lumbar region that had a height reduction of 50 % and 40%. I have lesions as well as diffused uptake into my left femur. In all honesty I probably should not be here. I certainly puzzle even myself when I think of what I can do with 3 herniated disks, Two collapsed vertebrae and arthritis of the spine as well as narrowing of the area that houses the spinal cord.(stenosis). Kinda like a miracle. Well that’s what God specializes in. Keep positive and stay away from people who aren’t. God Bless!
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Needing a little luck
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