How long will Pluvicto anemia last? - Advanced Prostate...

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How long will Pluvicto anemia last?

Nettie8200 profile image
32 Replies

My sweet dad had two Pluvicto infusions (the second one was 3/3, so we’re a month out—he got a reduced dosage because his blood counts were already dropping after first infusion) and his blood counts have taken a huge hit. Hemoglobin got down to 6.3, but went up to 7.9 after two bags of blood. Unfortunately a week later he was back down to 6.6, and got another bag last night. We are trying to figure out if it’s solely the doing of Pluvicto, or just the cumulative effect of five years of PCa treatments or what. He’s also got Afib and stents so that makes the low counts even scarier. Does anyone have any information or personal experiences about how long it takes to recover from bone marrow damage post treatment, or how long it takes to get Pluvicto “out of the system” so to speak?

Thanks so much,

Nettie

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Nettie8200 profile image
Nettie8200
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32 Replies
Nettie8200 profile image
Nettie8200

Follow up to add the Pluvicto doesn’t seem to be working so we will likely discontinue; just need scans to confirm.

Fightinghard profile image
Fightinghard in reply toNettie8200

everyone reacts and recovers differently to these drugs mine dropped to high 6s then rebounded before each cycle to low 8s. But i had to stop after 3 treatments because of progression and it caused really severe bone pain right after 3 rd round.

Tall_Allen profile image
Tall_Allen

Unfortunately, PCa attacks the bone marrow too. It is hard to get recovery sometimes.

Nettie8200 profile image
Nettie8200 in reply toTall_Allen

Yeah, that makes sense. Thanks Allen.

noahware profile image
noahware

I'm glad to hear your father is likely discontinuing the Pluvicto. Unfortunately, one possible answer to the question of when blood counts will fully recover is "never."

As TA mentioned, the anemia may not just be from the Pluvicto itself but could be from PC in the bone marrow (or both). I would ask your team if that seems to be the case with your father. (CT and bone scans will not show this, but MRI will.)

Over the course of four Pluvicto infusions, my counts were in slow decline though not alarmingly so. But after the fifth one, I went from "mildly anemic" to "moderately anemic" and my fatigue increased. I declined to get the sixth infusion, as I was also seeing rising PSA and ALP.

Within two months, my red counts fell off a cliff. Platelets, too. So for the past three months I have needed transfusions every two weeks or so. Some of this drop in counts could be attributed directly to the Pluvicto itself, and some indirectly to the Pluvicto as its failure may have helped promote micro-mets to the bone marrow. (MRI confirmed bone marrow involvement.)

I finally start BAT (high-dose T) this week after several delays due to other health issues. This therapy is a long shot so far as controlling cancer progression, but I am hoping at the least it will help with the anemia. As I'm sure you know, many therapies have anemia as a potential side effect, so I am avoiding those for now.

I cannot advise on the next step for your father, but I do advise stopping Pluvicto for sure. Good luck!

Nettie8200 profile image
Nettie8200 in reply tonoahware

Yeah, at this point, we're done with Pluvicto. Such high hopes for it. :(

noahware profile image
noahware in reply toNettie8200

Me too... but these new "silver bullets" don't work for everyone.

tango65 profile image
tango65

He may have a diffuse bone marrow infiltration by the cancer.

In this situations pluvicto may not be indicated since it could make things worst attacking the cancer cells in the bone marrow and the same time irradiating normal blood cells around the cancer cells.

It is a difficult situation since problems with the CBC may disqualify for clinical trials and other treatment such chemo will also affect the bone marrow.

Benkaymel profile image
Benkaymel in reply totango65

Would Radium 223 be an option in this case?

Nettie8200 profile image
Nettie8200 in reply toBenkaymel

He's already had it. I think we're out of SOC options.

Nettie8200 profile image
Nettie8200 in reply totango65

Right--it puts us in a bad position for any other potential standard of care treatments or clinical trials for that matter. :(

tango65 profile image
tango65 in reply toNettie8200

Perhaps the immunological clinical trials may be an option.

You could consider to consult with Dr. Tanya Dorf at City of Hope, she is excellent and doing a lot of immunological work in PC

cityofhope.org/tanya-dorff

GP24 profile image
GP24

You could try a re-challenge with Cabazitaxel. If you want to take part in a trial, I recommend the ODM-208 trial. orion.fi/en/newsroom/newsro...

urotoday.com/conference-hig...

Nettie8200 profile image
Nettie8200 in reply toGP24

if we can get his blood counts up, I think a rechallenge might be in order.

GP24 profile image
GP24 in reply toNettie8200

You can apply Cabazitaxel with a reduced dose in a two week schedule. This has lower side effects.

urotoday.com/conference-hig...

Nettie8200 profile image
Nettie8200 in reply toGP24

Good to know. Thank you!

nobaday profile image
nobaday

I followed Lu177 after each infusion with a Geiger counter and did 5 infusions. Unfortunately CT and MRI is showing progression after 5 infusions at CT/ C3 and C4. My T spine maybe diminished in activity but my prostate showing progression by increased size of tumour. It’s obviously the CSpine that’s the worry as further growth could be disastrous.

I followed exit of Lu177 with a Geiger counter and took around 4 days to be really low at 3 feet distance but still showing some CPM counts per minute after 3 weeks when Geiger placed directly against my liver/ kidney/ bladder where the Lu177 exits the body.

CJ4J profile image
CJ4J

My husband is in the same situation here. Last Pluvicto was in November. Has had 3 blood transfusions in January-February. What helped was 2 Iron infusions in February and now Hemoglobin is steady in the 7's. But his Platelets continue to drop and currently at 18. Petscan confirmed infiltration of cancer in the bone marrow. The next treatment after Pluvicto was Keytruda, but that failed too. Went on dexamethasone for a bit to help stop his decline and get his appetite back and stop nausea. The only option left for care is Nubeqa and just got approved to start last week.

Hope this helps, keep swinging!!

Nettie8200 profile image
Nettie8200 in reply toCJ4J

Did he have gene mutations identified in order to try the Keytruda? My dad has ATM mutation and tried Lynparza previously but it wasn't effective. We might get him genetic tested again to see if any other mutations will show up. My dad hasn't done Nubeqa either--did your husband have Xtandi or Zytiga previously?

CJ4J profile image
CJ4J in reply toNettie8200

Yes, he had High Tumor Burden which qualified him for Keytruda and also a small ATM. But blood counts are to low for anything else.He has taken Xtandi, Zytiga and Erleada. Nebeqa was the only one left to try, and it took a little work to get it approved.

MateoBeach profile image
MateoBeach

Really tough if PC has infiltrated bone marrow to such a high degree that blood counts are not replenished. Are platelets and WBCs similarly low? Thinking that perhaps an EPO drug (erythropoietin) could stimulate remaining potential for RBCs. And Nulasta for WBCs. Testosterone also stimulates marrow production but BAT not appropriate if painful bone mets or critical spinal mets present. Then transfusions and stay close to him.

Nettie8200 profile image
Nettie8200 in reply toMateoBeach

Platelets are at 80 but were at 70 a few days ago and WBC also low. Yeah, I think there's too much cancer activity for BAT. He had another transfusion yesterday. He's also holding his blood thinners and that is causing hemoglobin to rise a bit which is a good sign. Apparently extended use of blood thinners can cause anemia...

Zengal79 profile image
Zengal79

Sorry to hear that Pluvicto wasn’t beneficial. Tough spot to be in for sure. For my guy, the counts never recovered. Platelets soon took a tank as well. Hoping your dad’s drops are just transient. Best wishes to you. Your dad is lucky to have you. Prayers!

Nettie8200 profile image
Nettie8200 in reply toZengal79

Thank you! He's been holding his blood thinners and we are seeing a rise in his numbers, so I'm hopeful we're on the right track. I think Pluvicto pushed him over the edge.

Zengal79 profile image
Zengal79 in reply toNettie8200

Glad he’s off the blood thinners. My heart goes out to you. Keep us posted.

Brbnbrn profile image
Brbnbrn

We are now in a waiting line for Pluvicto. He's gone through the whole SOC regime starting in January 2018. He had 34 tri-weekly rounds of Jevtana. (Almost 2 years.) PSA holding in mid-30's. PSMA scans show no major spread past initial results after 1st chemotherapy in 2018. Doctor says "remarkable" response to Jevtana.

So they took him off it to start Pluvicto. Major withdrawal symptoms from Prednisone.

After reading these threads.. I'm wondering, is it worth it?

I know he's exhausted after this 2 year routine.. like having the flu for 10 days out of every 21. He says he's ready for something new and promising.

Now I'm doubting that decision. 😕 especially since we have to wait at least 2 months sans treatment until a shipment arrives.

My question: Was it worth it to you and your hubby? Was he able to have a very good quality of life? Were there other side effects that made the decision to receive Pluvicto a regretful one?

Sorry for making this about us... but my heart hurts a little with all this!

❤️

Nettie8200 profile image
Nettie8200 in reply toBrbnbrn

Hi there--unfortunately Pluvicto was not effective for my dad and his cancer-related pain is just increasing so I would say no, not worth it for us, but upon looking back at his PSMA-PET scan, it did say he had low to medium expression of PSMA, which could be the reason why he's not responding well to it. Some men respond very well, others don't. I would encourage your husband to get both a PSMA PET scan as well as FDG PET scan, and that might give a clearer picture if Pluvicto will be effective.

To be honest, my dad's quality of life is quite low right now. He's in pain, sedentary, and not able to do things he previously loved. It is worth it to me and my family to keep him with us as long as possible. He has lots of grandbabies he wants to see grow up as long as possible.

j-o-h-n profile image
j-o-h-n

Sweet Dad has a sweet daughter....

j-o-h-n <===<<< Senior management is about to spike my spikes....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/06/2023 6:26 PM DST

Mw921000000 profile image
Mw921000000

hi nettie, just wanted to check in because my dad is almost at this point, how is he doing?

Nettie8200 profile image
Nettie8200 in reply toMw921000000

Hello Mw,

I’m sad to say my dad passed on August 30th. He was essentially blood transfusion dependent from April and his last transfusion was 6 days before he passed. They most definitely helped his energy for a while but the last month they did very little to improve his quality of life. Dad wound up having one full and one partial dose of Pluvicto at the beginning of this year but really no effective treatment from October ‘22.

I’m sending you and your dad many good wishes. Please let me know if there’s anything else I can answer.

-Annette

Mw921000000 profile image
Mw921000000 in reply toNettie8200

Oh no. I am so so sorry. I was worried this was the case 😢 my dad became castrate resistant last year. We stopped xtandi when it failed a few months ago and did some targeted radiation. He’s starting chemo next week and I’m praying for good results and an improved quality of life when it’s all done. I know pluvicto will be in his future (hopefully not the near future), so I was wondering your dad’s results. I feel terrible to have read that he passed. 💔 thank you for responding. Wishing you the best on your healing journey —Michele

Nettie8200 profile image
Nettie8200 in reply toMw921000000

Is this your dad's first time with chemo? My dad was diagnosed in March '17 and immediately started Docetaxel which was definitely a success. He tolerated it pretty well except for the pain from Neulasta which we learned could be tempered by taking Claritin in advance.

Thank you for your good wishes. My dad had nearly 5.5 years after his initial diagnosis, and got to see the birth of 2 additional grandchildren. We are grateful we didn't lose him in October 2020 when he had a bad bout of Covid. The loss is profound, but it was a blessing to have time with him these last few months, as hard as it got in the final weeks.

Sending you all the best.

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