Will be getting my second treatment on Tuesday.
Unfortunately, my PSA has not dropped a whole lot. It went from 248 to 222. My Alk Phos shot up from the mid 300s to almost 600 now. Hoping things improve after the next infusion. Hope it's just dying cancer cells affecting the PSA.
I still feel better than I did before the first infusion, but pain levels have been fairly steady with Norco needed pretty much around the clock. I did get a little pain relief initially.
What does your MO say about the PSA and ALP response - are they as expected at this point in the treatment? Hoping for the best for you.
I haven't asked yet, but will when I go in for the treatment. I figured I was going to do the second one, pretty much no matter what the numbers were. After number 2, I will want to get a scan and take a closer look before continuing. I really don't want to chase after treatments that aren't working and delay or potentially eliminate other options.
I would take any reduction in PSA after one infusion as a win. However, 600 is a high ALP - what are your other liver function markers like (e.g. bilrubin, ALT, AST, etc.)?
How extensive are your bone mets? Your profile only mentions "progression on left side of pelvis"?
I have progression in my hip and pelvis, mainly the left side. My other liver enzymes aren't too bad. AST is slightly out of ranger but ALT and Bilirubin are in range. ALP is a function of bone turnover so could be bones repairing. I'll have to ask the doctor.
In that case, it sounds like bone repair/cancer dying response but I'm no doctor. Any other bone profile markers out of range?
I don't think there are any other bone specific markers they took on my last blood test. They are mainly looking for bone marrow suppression and liver enzymes usually < 5X ULN. They are OK with high ALP.
Thanks.
Hold onto an amethyst during the infusion (just kidding).
Let's sing it together:
🎶Mystic crystal revelation 💎
And the mind's true liberation
Aquarius!
Aquarius! 🎶
It's interesting how it's the people who don't have cancer that are always the ones recommending things like amethyst crystals. My young neighbor accross the street told me that yoga will cure my cancer. It's working for him.
🤦🏽♀️
I’ve got some quartz crystals for sale Ed. My natural healing guru says they’re more effective than amethyst if you’re in late stage cancer.
They work even better if you grind them into a powder and add to a banana and spinach smoothie…
good luck Ed for Tuesday. My second is on Wednesday. I have managed to come off the morphine and only using Oxy so that maybe a good sign. I think the true test for both of us will be results after the 2nd and 3rd.
Hopefully no supply issues before Tuesday. I think you would have heard by now.
Best to you Ed.
Regards
Dermot
Glad to hear you are using less pain meds. I'm using less too, mainly Norco 5mg vs. Norco 10mg before my first infusion. Not using morphine although I have it.
Even though I still have pain, it's an improvement. Let's hope number 2 really crushes the cancer!
Sound like a scratched record but I too am hopin for the best. I think all you can do is wait for scans and another infusion with resulting blood tests to get a better picture of what's happening. I'll be optimistic and lean on it being dead cells.
Just started the Eclipse Trial & had 1 infusion & they warned me that the PSA often goes up after the first, due to cell die off! Best of Luck!
Hoping you get a great response!
Those 3 “isolation” days were tough for us. Hang in there! Glad they are offering scans after second round. I’d say it’s a good sign you've been able to decrease pain meds.
Best wishes to you, thanks for keeping us posted.
Sending you ((HUGS)) and praying your treatment lowers your numbers and brings you pain relief!!! ❤️
sounds like it’s going in the right direction. Prayers for continued improvement. I started Jevtana chemo treatments Friday until I can get my Pluvicto appointment scheduled. PSA is now 273 - climbing about 60 points every 30 days for the last couple of months.
Good luck Ed. Praying for a good response for you and all of the other guys in this thread.
When was your PSA taken? if it was taken within a few weeks after your first treatment, instead of around the six week mark, it may not be a true mark.
My PSA at my initial 6 week mark showed a drop of 70+% at 23. But within 2 weeks after my 2nd treatment PSA showed an increase of 50+%. I expect this is not a "real" #, and I will have an update in the next few weeks. My Oncologist did tell me that when I got blood work at the 2 week mark the lab automatically did PSA test even though he did not, nor would not,order it at that time.
Sounds similar to where my dad is at. He just had 2nd infusion last Friday and after first, he had an initial decrease of ALP, then it shot up. PSA showed increase at both blood tests. Keeping my fingers crossed it's cancer dying/bone growth.
Ed - I always appreciate your real life insight to all of your cancer journey; sharing thoughts of kicking cancers azz to what a future date of when it's time to fold the cards.
But for now, keep fighting the fight! You have a lot of love and support from your other Cancer Brothers!
Thanks!
I'll have to evaluate whether this is working after this infusion. Not sure it is.
At some point, I'm going to have to take the exit ramp. I think it's a mistake to chase after tretaments that aren't working trying to complete the "hail mary" pass. Allowing yourself to become debilitated from cancer progression will insure you can't use the "death with dignity" option which I intend to pursue. I have seen this happen several times now. At some point it's just rearranging the deck chairs on the Titanic.
Best of luck to you Ed! I'll be thinking about you!
I will be too. From what I have heard, John4803 is correct, the PSA can be slow to move at first and may even go up, even if the treatment is having a positive effect.
I send heartfelt prayers for you EB and all the other warriors posting in here. Not much to report just yet regarding our own journey, but I read most everything out here and I'm learning so much.
Good luck tomorrow.
Good Luck Ed🙏, please remember “NVR Give Up” you will get thru this
My Father always told me, Sweety“ this too shall pass”, I lost him 32 years ago, still hurts
I just got my labs for my first Pluvicto treatment of 6 weeks ago. All labs are within standard limits and PSA has dropped from 7.5 to 5. I have the second treatment set for 03.23.2023. I’ve had some nausea and tiredness but nothing major.
how’s it going after your 2nd treatment Ed? I have increased pain after mine but believe this is normal.
Funny you should ask today. I just had a significant drop in pain today over yesterday. I also had a pain drop the same number of days after the first treatment, but started off at a higher level. I think I'm at lowest pain level today since I started. But pain does go up and down so I don't want to read too much into this until I see a sustained reduction in pain.
I still need Norco, but definitely less.
I’m a day behind you so it’s a pain day for me. Norco is my friend. Fingers crossed for Saturday.
I'm doing 5mg of Norco every 4-5 hours today and that's good for me. Yesterday was really bad for me. I was doing 10s, partly because I got behind so that was bad. Norco is kind of slow and that's something I really don't like. A friend of my wife is a Hospice nurse and she said they don't use it because it's too slow. Also taking Ibuprofen and that helps a lot.
Woke up this morning and I was almost walking normal, huge improvement.
wow. I hope to walk normally and without a cane 🙏. I take 2x 10mg which can last 4-6 hrs. I don’t like the pain which really started December 2022. How things have changed after 7 good years.
Do you find that Norco is slow to provide relief? It's probably not a problem if you are taking it continuously, but I am stopping and starting it up again and that may be where the problem is.
how you doing today Ed?
For me I have more pain Sunday night and Monday morning😳
My pain is going up and down. It went up on Saturday, but then back down on Sunday and today it's also pretty good. The problem for me is I just don't want to take the opioids so as soon as I start getting better, I start stretching them out more and it seems like there's a reservoir that's gets depleted. When my pain returns, I end up starting over a little building the relief back up again. Really hard to titrate with Norco for me.
I want to find something that's faster acting than Norco. It takes too long to get relief because I don't feel like being drugged up all the time which would be one solution. Ibuprofren helps a lot so I figure a lot of it is probably inflammation.
same here ironically. Took only 4 oxy all day on Saturday and a few more Sunday. I guess that’s the cycle for now. I hear people saying it’s the cancer cells dying but not had that confirmed by a MO. Hopefully we see improvements in the next week or so. 🤞. Keep fighting my friend.
Nice picture!
I saw in another post that you are going to Kaiser. I am too. They support the death with dignity which we have here in California. I may use it because this pain is only going to get worse and worse as the cancer progresses. Could start having bones break, fractures, cord compression, etc. Who knows. I think the potential for suffering is too much.
yes I agree. That’s my view also but not for a few years yet🤞. Pluvicto will work for both of us and give us some pain relief and a few more years. The pain when it’s bad distorts our views on life but it’s good to know that we have a plan when all treatment are done. I do not plan to live be my life in excruciating pain. It’s not worth it.
Hi, I'm in Australia and we seem to have different names for a lot of these pain relief medication.I was taking Endone which I believe is fast release Oxycodone. But I've been moved to TARGIN which is slow release Oxycodone. Each tablet has 10mg Oxycodone Hydrochloride plus 5mg of Naloxone Hydrochloride.
I've been taking one of these tablets every 12 hours (4am & 4pm) and it's been a game changer for me. I have not missed a nights sleep due to pain for over 6 weeks now. I'm over the moon. When I get up in the morning I feel great because I've had a good nights sleep.
Pluvicto pain
Pluvicto Update
