Magnus19643 years ago

I am not sure I understand. How long were you on Eligard and xtandi? It seems like your doctor switched you to Zytiga without giving Eligard and xtandi a real chance?

Rexwaterbury in reply to Magnus19643 years ago

PSA was rising on Eligard and full dose xtandi. Psadt approximately 2 months. Entered a clinical trial which failed, that included switching from xtandi to zytiga. Psadt 1 month. At that point I started multi agent chemoRx with noted results in original post.

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Magnus1964 in reply to Rexwaterbury3 years ago

Ok, there are a lot of other treatments after chemotherapy, casodex, Provenge, xofigo plus clinical trials.

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Hidden3 years ago

The lowering PSA numbers can simply mean your damaged immune system is killing less and less cancer with each chemo round. You will need to wait a few weeks to get a "new" PSA reading as your immune system recovers and you return to a sort of "steady state" again. At that point you will then know if the chemo worked or not - if under 10 and steady, you had a win. Alas, the majority get a loss (and they do not need to wait 6 weeks to find that out as the PSA may now be doubling every 10 days).

The big problem with chemo is that it takes years for the immune system to fully recover and "assistance" is needed. There may be "new" Diabetes Type 2 and blood pressure to deal with as well. If blood sugar rises at all, that will feed new cancer growth and undo the good work. The DB2 may go away by itself after a while, but treat it until it does and avoid any sugar in the diet.

Try to use "benign" cancer killers like Vit C via IV, rather than more poisons which will keep your immune system in permanent bad shape. Failure to wait out 6 weeks odd to see what your real situation is could lead to poor next steps. It sounds like your doc is a "get it all!" guy so you may have to slow him down or seek alternate support. Doctors like to disguise a bad chemo outcome by quickly starting some other idea, so that can be blamed instead of the chemo!

Do not be afraid to do some experiments to see what works for you. Read about raw foods and smoothie diets to help the immune system recover - yours has been knocked back about 95% and your gut biome killed off so has a very long way to go. It will take years. Good luck on your journey!

Zetabow in reply to Hidden3 years ago

I had good result from Chemo PSA 1386 down to 0.38 but developed high blood pressure about 6-7 weeks later. I assumed this was more to do with ADT, medication has got BP under control.

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Hidden in reply to Zetabow3 years ago

Glad you were one of the lucky ones that got a good result. Chemo works a treat for many. The problem I have with Chemo is the appalling standards of pre-selection which leads to appalling survival rates. Chemo literally kills a lot of patients - it just may take a while to do so, and something else usually gets blamed. One would think that after 23 years of use, there would be some very precise markers that would sort the sheep from the goats. But ability to pay seems to be the standard test applied.

Your BP problem may be tied to poor breathing and sleep positions to get some sleep - a common problem and side effect of many of the meds we take. It is easy enough to check that out - take a few deep breaths and see if that drops the BP (and pulse rate) in a few seconds. If that does not do the trick and the BP is dangerously high, try sipping brandy or wine (get the vapour into the lungs), and add a 5mg Amlodipine (it seems to act more quickly than any other BP medication - other than brandy of course). I was having many episodes of 205/105 (perhaps higher but not measured) for 18 months after chemo. I was lucky to not get any strokes.

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Zetabow in reply to Hidden3 years ago

Highest it got was 180/114, most of the time it was 150/100. Interestingly what led me to see the Doctor about BP is still happening to me, a build up of pressure in my head, it's now mostly at night when I lay down, feels like my head is filling up with a liquid lol I keep checking BP but shows almost normal.

I'm in Europe so not at Insurance companies mercy. I think my biggest advantage in taking the Chemo was I was young (55) not overweight, in good physical condition and never had any previous medical issues.

I will try what you suggested. I do have a lot of issues sleeping due to pain, I don't move around much at night and very locked up and stiff in the morning, the totally wrong kind of morning stiff lol

Thanks

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Hidden in reply to Zetabow3 years ago

Are you using anti-inflammatories like Diclofenac or Celebrex as your primary pain control? Then 500mg Paracetamol as the next step up. Usual pain killers can get your brain swimming ...

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Zetabow in reply to Hidden3 years ago

I'm taking Opioids, Oxycotin and Oxycodone as well as Nuerontin. Some damage to Femurs as the cancer got into the Marrow. I have quite a cocktail prescribed by a pain specialist.

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Hidden in reply to Zetabow3 years ago

I bet you could cut these dangerous pain killers by 80% if your base was anti-inflammatories. Try it and see. The pain is caused by inflammation! Buy some cheap diclofenac and see what 50mg does.

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scarlino in reply to Hidden3 years ago

My PSA on taxotere had an initial drop about 25 and then rose again. They took me off Taxotere and started on Jevtana. Same thing, first infusion it dropped about 30% but after the second infusion it rose slightly andvi developed my first bone met on a rib (had been located only in lymph nodes but they also increased slightly) . They have added Carboplatin with my third infusion. What I’m hearing is perhaps they should have waited? I’m at MD Anderson so I would think they would know this. Will definitely question on my next visit. My thought was the rise meant it wasn’t working but perhaps it was.

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Hidden in reply to scarlino3 years ago

The core problem with what is going on during Chemo is the mis-interpretation of the PSA readings - and that leads to many very bad decisions. The way I see it is like this:

1. The first day or two while the chemo is still in the blood - if the PSA rises, that would indicate a direct kill of the cancer cells - the higher the PSA, the better the kill. Alas, nobody takes the PSA at this time! For all we know, the chemo does not kill any cancer at all.

2. The second phase is supposed to be the main mode of action - the shutting down of cell division. This certainly works on many of the bodies normal functions where cell replacement cycles are a few days. Thus the immune system is shut down, and the gut biome is devastated because of its short life cycle. The theory seems to be that the cancer cells will die because they cannot reproduce - just like the T-cells and gut biome. The problem with this theory is that cancer cells live a long time and have long life cycles - hence the idea to hit them again after 3 weeks with another round. Again, we are short of PSA numbers in the 4 to 10 day period, so the actual kill is not known. Or, for that matter, the now unrestricted growth (nothing to stop it with no immune system) is also not known. My guess is that some mutations get killed, while others take no notice of the chemo and grow. Thus the mutation mix post-chemo is quite different - and tougher.

3. PSA readings 2 to 3 weeks after chemo are very variable and vary with individuals as well. The general PSA readings come in lower than the "start" number, which means that less killing of the cancer is happening than before chemo - logical as the immune system that does the killing is now out of action. Onco's like to point to these low numbers and say "See! It worked!" But if you wait for the immune system to start recovering, that PSA can rocket higher, doubling every few days and ending a few weeks later higher than the start before chemo (and the patient can be in dire trouble). There is a mystery here - for the lucky ones (what makes them different?), the PSA seems to stay low, even though it can be assumed the immune system is recovering. The answer seems to be that the chemo did kill off the cancer - less to kill - less killing - lower PSA.

The bottom line is Chemo is a shot in the dark. We need some good research done to find out what happens.

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immunity1 in reply to Hidden3 years ago

I agree that PSA readings are prone to misinterpretation. Imaging is more informative.

However, when one does PET FDG scans on PC often you can find the lesions are metabolically active, that is the cells are multiplying faster than surrounding body tissues. So it is logical to use cytotoxic drugs. Besides which there are many anecdotal testimonies to show the palliative or curative effects of chemotherapy. =Rob

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mklc in reply to immunity13 years ago

apologies for my lack of knowledge about scans.

Is the PET PET FDG the same as the Gallium 68 PSMA PET CT Scan?

Thank you. Mike

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immunity1 in reply to mklc3 years ago

I am not a radiological whizz but PET/CT PSMA scans using 68Ga or 18F labeled ligand are used to detect a cellular marker (PSMA) that is often present at higher levels in PC cells (as compared to normal prostate). High avidity PSMA cells may then be targeted with the same ligand with a gruntier label, such as Lu177 or Ac225. PET/CT FDG is a more generic scan to measure metabolic activity within the body - hence it will detect cancer (of various types, not just PC) and other fast growing cells. Hope that helps. =Rob

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mklc in reply to immunity13 years ago

Thank you so much...now I understand.

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podsart3 years ago

Have you been with dr drake all through this process?

Did you get any genetic tests?

Did Dr drake discuss immune therapy, that’s his specialty?

Rexwaterbury in reply to podsart3 years ago

Been with dr Drake 2 years. Genetic testing shows I have loss of PTEN. Dr Drake is considering immunotherapy, but I’m interested in all options.

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Grumpyswife3 years ago

My husband has PTEN deletion as well and we were told that is very common in PCa and that there was no specific immunotherapy for it yet. However, that discussion was more than a year ago and things may have advanced.

From what people have written here, chemo often resets the ability of Xtandi and other previously failed agents to work again which would be a great reward if it works for you.

I will be interested in what Dr. Drake suggests. Please keep us informed and good luck.

dmt11213 years ago

It wold be very helpful for you to provide your history of diagnosis and treatment, including timeline.

Thanks.

Patrick-Turner3 years ago

Since 2009 when I was diagnosed, I had a similar history of failing ADT and added drugs, then then chemo that failed badly, Psa moved from 12 to 45 over 5 shots. After quitting chemo Psa fell to 25. But scans showed a horror story so I then got 4 shots Lu177, and that seems to have worked well so far, and scans then showed bone mets were healing, all soft mets gone, and I didn't have mutant Pca that had not responded to Lu177. So may I am lucky, but Psa is about 0.4 now. I am also taking Xtandi which docs say aid the effect of Lu177.

They said the chemo probably made my Pca re-sensitized to effect of Xtandi.

I'd had Zytiga fail after 8 months, so docs knew it was no use trying Xtandi straight after that, and it is not allowed under our Medicare system here.

I can buy more Lu177 if Pca returns and PsMa Ga68 scans show its likely to work. So instead of feeling I had only a year left at this time last year, maybe I get another 4-5 years from now. I am still on ADT with monthly injections of Lucrin.

I am cycling again and doing 100km+ per week at 72yo, so docs are well pleased. I'm in Australia, but US men have to get into Lu177 trial or go to Germany. But I met two US men in Sydney on one of the days I had an infusion. They had the dough, and had flown over from US to get treatment from Theranostics Australia. Cost for 4 infusions was usd $27,000 plus some PsMa Ga68 PET/CT scans.

Patrick Turner.