Asking on my behalf of my 71 year old dad who was dx'ed in April 2018 with numerous bone mets all over, no activity in soft tissue. He's been on Zoladex from the start, did Docetaxal between July and October 2018, Zytiga+prednisone from August 2019 til now, and Xgeva since May 2020 as well as some targeted radiation in his hip and shoulder in April 2020. He is being treated by Dr. Maha Hussain at Northwestern Memorial in Chicago. Dad also has atrial fibrillation, congestive heart failure, type 2 diabetes as well as high blood pressure so he's on a slew of other medications. Genetic testing about a year+ ago showed no genetic mutations.
As of last week, his PSA (1.08), Alk Phos (57) and testosterone (15) are all trending upwards in the past 2-3 months, albeit slowly and will sometimes drop, but then rise again. His scans from last week look pretty consistent with scans from January and April--some new mets appear while some old mets disappear. I'm not 100% convinced Zytiga is failing, but it might be. Attaching photos of historical data for those 3 markers.
At last week's visit, Dr. Hussain was concerned by the drop in dad's platelet and WBC count (72 and 3.0 respectively) so she sent us to a hematologist today. I think she was concerned that the cancer was in the marrow and preventing platelet production. Hematologist is doing her investigatory work but seems to believe dad's dip in numbers may not be bone marrow failure, but due to other factors (family history, reduction in prednisone recently, possible ITP, enlarged spleen, vitamin deficiencies). Today's blood draw, in fact, had improved from last Thursday (platelets up to 83 and WBC to 4.3).
We see Dr. Hussain again on August 6th to decide what's next, but she mentioned both Xofigo and Jevtana as options. (I'm also going to push to switch to dexamethasone before we give up on Zytiga.) Dr. Hussain sounded like she favors Xofigo. I'm very concerned about going to Xofigo next given its tendency to hit platelets and dad's already low numbers. He tolerated Docetaxal decently (honestly, the worst thing about it was the Neulasta which caused awful bone pain until we figured out the right Claritin + painkiller combo).
My inclination is that Jevtana would be the better of the two options for dad. I'm researching other possibilities, clinical trials, etc. (major shoutout to the wonderful JLS1 in this community who I've been messaging with) but if we get to a point where it's Xofigo vs. Jevtana, I want to feel like I've weighed them against each other as thoroughly as possible.
I'd love any input or thoughts you may have for me.
My sincere gratitude to you all for sharing your stories and knowledge. May there be strength in community.
-Annette
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Nettie8200
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Thank you Annette. I forgot to ask if your dad is taking anything to strengthen his bones - ie., Xgeva? our oncologist at U of C had my husband on that within a year after being diagnosed.
Maybe email this link to Dr Hussain and see what she thinks (I'm sure she is aware of it, but it seems like a good thing to discuss), given his blood numbers:
His cancer is being managed by one of the best MO specialized in PC.
People in this forum does not have any clinical experience. I believe, Dr Hussain has a lot of clinical experience in managing these situations.
You are well informed and have a good understanding of the different therapeutic options. Did you discuss with her your concerns about the platelets and possible bone marrow suppression by Xofigo?
I would follow the advise of the doctor. If I have doubts about her opinion, I will get a second opinion at the MSKCC in NY, The Dana Farber in Boston or the MD Anderson in Houston etc...
We haven't discussed this with Dr. Hussain yet--we were sort of stunned by the low platelet and WBC numbers at our last appointment, and the plan was to get that sorted out and regroup on 8/6 where we will discuss next steps.
Please don't get me wrong--I understand wholly that Dr. Hussain is the expert here. I am not. My aim in coming to this group was to better understand the pros and cons of Jevtana and Xofigo and folks' personal experiences with those treatments.
Lots of us here admire that you are doing your homework as we all should. Kudos to you. Your dad is lucky to have a daughter like you.
With any treatment there is always the issue of the patient's fitness for it. Blood counts in particular can exclude patients from certain treatments at certain times.
You can see what these restrictions are by looking at the prescribing labels of the drugs. I have posted those for Jevtana and Xofigo in this thread.
One thing to keep in mind though is that blood counts are often affected by the cancer itself and succesful treatment can improve them in some cases.
Thanks for the kindness, Gregg. Selfishly, I cannot come to terms with losing my dad yet. I am pregnant with my first baby, due in October, and it pains my greatly to think this child may grow up and not remember my father. Doing this type of homework helps me feel more in control of this rotten situation.
Thanks for the input you've shared--I will make sure to read closely the prescribing labels of Jevtana and Xofigo.
When I was first diagnosed there were no grandchildren on the horizon for me and I really wondered whether I would live long enough to see one. When my daughter became pregnant last year with her first, I was so excited I posted about it last year: Finishing the Dream
I just got to hold my granddaughter for the first time about a month ago so I just want to give you some hope. I really didn't think that would happen and it did. I'm so overjoyed about that.
Just taking one day at a time and getting the most I can out of the life I've been given. That's really all any of us can do.
Wishing the best for you and your dad.
I agree with you about Jevtana being the better choice. Jevtana is a superior treatment as compared to Xofigo.
My doctor has treated a lot of prostate cancer patients and said he has not been impressed with Xofigo. Plus it only works on bone metastases.
Here's a discussion about Jevtana (Cabazitaxel) and it's role as the third-line treatment in CRPC.
Tango, there are studies showing Xofigo causes bone marrow failure in about 40-45% of those with bone mets in the trabecular bone! -and there are tests to reveal who those patients are. Had I known this before my husband started Xofigo, I feel he'd still be here today! Bayer needs to make this known!!
"The analysis of these parameters suggests that, in patients with a high skeletal tumor burden, the incidence of bone marrow failure in the course of radionuclide therapy could be higher than what reported previously. Further prospective studies are needed in order to confirm these data."
Tumor Burden and Intraosseous Metabolic Activity as Predictors of Bone Marrow Failure during Radioisotope Therapy in Metastasized Prostate Cancer Patients
I am not saying he should be treated with xofigo. My point is that his therapy is being conducted by one of the national experts in PC, and the members of this forum should not second guess the decisions of an expert in PC. Besides his doctor has not made a final decision. We do not even know if he has cancer in trabecular bone and in the bone marrow. His platelet count is far from causing serious problems.
Both treatments can improve survival, we should keep our bias in check and let an expert decide what could be the best for the clinical conditions of the patient.
In the original post, she says the doctor is offering both Jevtana and Xofigo. No one is going against her doctor, please read the post and stop making that claim.
It seems like your dad has a number of medical problems and any treatment for Pca will add to the stress on his body from his other problems.
Has your dad had a recent PsMa Ga68 PET+CT scan? If this type of scan shows all his bone mets that have high uptake of Ga68, he might do well to have Lu177. His Psa is still quite low, and you say scans show some bone mets have grown so big then appeared to have ceased growing. I can only guess that the size of his bone mets are not big enough to threaten bone strength. I've had bone mets which reached the size of a pea in femur and pelvis, and countless others have not caused pain and reduced QOL.
I had Lu177, after ADT, Cosadex, Zytiga, and Docetaxel chemo all didn't work for very long. Lu177 worked fairly well for 4 shots in 2018 to 2019, but now Psa has gone back up as it so often does with so many men, so I am having more Lu177. I may have PARP inhibitors if DNA shows I might get a benefit. Its seems Lu177 killed all my countless soft tissue mets in lymph nodes. Pca has not invaded any organs yet.
Ra223, or Xofigo has side effect of making bones brittle, but maybe is OK if bone mets are small, so the volumes of dead bone when mets are killed by Ra223 are small, so bones have sufficient strength if mets are killed, and body tries to repair the bones. Where bone mets are the size of a golf ball, its a real big problem. I was diagnosed with inoperable Gleason9 in 2009, and I have been cycling a regular 200km+ per week since diagnosis and I am 73 now, so I am maintaining a good QOL with no other co-morbidities and my Pca has become a chronic condition that has yet to get right out of control.
I could get Xofigo. It is not commonly used, and not many men have told us their story with this radioactive nuclide. 6 shots Ra223 in Australia would cost me about usd $46,000.
I may need to have it if nothing else works, but the more radioactive things that are pumped in raises possibility of leukemia etc. I can only have so much treatment.
Be careful with Xgeva because too much can cause lower jaw necrosis, and maybe 1 shot every 6 months is a good enough benefit and there could be no point in having any more.
Thanks so much for the feedback and great questions. I honestly don't know how big dad's mets are--I haven't seen a scan with my own two eyes in a while and just read the summaries written up by the radiologists but to my understanding they aren't huge but aren't tiny. Luckily my dad has no bone pain and has had no fractures.
My dad has not had the PsMa Ga68 PET+CT scan. Lu177 seems to be pretty unavailable here in the states and does not seem to be standard of care and might be cost prohibitive for us to travel abroad (nevermind Covid). I will keep that idea in my back pocket, however, once other options have been exhausted.
You're right in that whatever we proceed with will take a toll on my dad because of his co-morbidities and that is important to remember. It is such a delicate balancing act.
Thank you again, and my good wishes to you. Your level of cycling sounds amazing--I wish I could talk to my dad into some more physical activity! I'll have to be satisfied with him gardening and doing yard work.
You are probably right about your dad's met size, neither too big or small, but you can bet they will grow bigger with time. I've had 7 PsMa Ga68 scans so far, first was in 2016 after ADT failed. And it showed first 2 mets which were in 2 lymph nodes near esophagus and I then had additional IMRT to PG which had not been removed and to the 2 mets. Cosadex was added to ADT which I still am having. result was 6 months suppression of Psa, but next year in 2017 there were more mets which had grown big enough to be seen in PsMa scan, including in my bones. It seems probably I had maybe hundreds of mets which had begun before diagnosis in 2009, and they all remained too small to be seen in scans until 2016, or in some biopsies which were done when RP was attempted, but abandoned due to too much Pca outside the capsule. The mets were suppressed by ADT, but over time they all grew larger, and they are what threatens me now. They don't seem to have mutated to a form of Pca that is impossible to treat with anything known - and this does happen in some men, and its real bad luck.
But here Australia the leading Pca experts say the PsMa scan is The Most Reliable scan available, better than any CT scans so commonly used.
I went out yesterday for 40km cycle ride and felt very well after and still do. To my mind, Lu177 has the least side effects of the treatments that actually kill Pca cells. The ADT and add-on drugs like Cosadex, Zytiga, Xtandi merely seem to slow down Pca growth and Pca still manages to grow, although slower, as the history of my scans shows.
Chemo didn't work, there wasn't much else I could try, so Lu177 worked a lot better, and I am having more of it and experts say it should work well, and I see the reasons for saying that because I've followed research findings at Peter Mac hospital in Melbourne where there is a huge Govt funded cancer hospital that leads the world, IMHO. The hospital publishes its findings of trials.
Meanwhile, Theranostics Australia provide Lu177 to any man if chemo fails and it fails so often with Pca. My Psa went from 12 to 50 after 5 shots of Docetaxel, and some mets grew smaller, but most grew bigger, and some new mets were seen because they'd grown big enough to see in PsMa scan. I then qualified to get Lu177 here.
I find the chemo has caused lingering side effects of neuropathy mainly in lower legs and feet, and made walking on gravel in bare feet impossible, but otherwise a bit numb, and slow to react, so my feet are slower to respond to messages from brain to avoid dragging causing a fall. I have to be careful. I think the cycling is forcing my lower legs to repair themselves and my bike average speed has not dropped very much.
Its now 2 years since I began chemo, and the neuropathy is still there, but if I had a lot of other health troubles I would be much worse off. My mind does not seem to have suffered with chemo; this is something claimed by others who had chemo, and again I would say my bicycle has saved me from the worst.
In many cases, and in mine, it is probable that all known Pca treatments just add time to being alive. I don't know much that cures Pca after it has spread widely.
By the time I get through this next round of Lu177 shots, and maybe get big reduction of total mass of Pca that I have, something else might become effective new treatment that is available, and which now is only in research stage. I recall reading about Lu177 and Ac225 some 10 years ago, and how they were able to make these radioactive substances become targeted to Pca mets, and its seemed so miraculous, but after trials were done they found Lu177 gave median life extension of 14 months. But the men in trials were often near death with 3 months to live if they were not treated, and all with high Psa.
I know one who had 7 shots of Lu177 in 2016 and is still alive, but others have died, while a few had very poor response while a few got near remissions. I did so well that docs are confident some more Lu177 should work, and it seems no doc is saying that my Pca has developed resistance to Lu177; maybe its just too hard for my Pca to fight Lu177; being bombarded by Beta particles at close range is just too much for Pca DNA, and Pca cannot repair itself easily. But nevertheless, its likely Pca will kill me, given enough time.
My Pca probably began in 2004. But Psa was too low to justify any investigation.
Threshold for investigation here is Psa 5.0. It should be 3.0, and I might have had a successful RP in 2004, and not had any of the troubles and expense of fighting Pca because it has spread. So the medical system is at fault for not providing action to better prevent Pca from becoming a killer. But in 2004, a PsMa scan was many years away, and only biopsies were reliable, and even these can not pick up presence of Pca, and then we had docs suggesting "watchful waiting" as Psa went higher, because they know some men have a rising Psa above 5, but their Pca does not kill them; they die with Pca, not from its direct effects. I think men should be able to have their PG removed as a pre-emptive prevention measure even where there is no Pca present, especially if they have brothers or fathers with Pca.
It seems Lu177 is easier for me to access than it is in USA. its allowed here to be available without full approval because it gives so much extension to life for so many men.
Before C19 stopped international air travel, I met men from US who came to Sydney to get Lu177. The cost of air fares plus cost of Lu177 just didn't matter; they must have been wealthy enough that the cost meant nothing. But most men in USA had traveled to Germany for Lu177, where this therapy was invented.
The US govt should approve Lu177 now, and not deny men the chance to live longer.
Hi. First off, I would kill for your Dad's PSA Number. My Oncologist started me on a six month course of Zofigo (radium 22). It is one shot monthly. I have had four shots with two to go. After the injection I feel very tired and out of it for two days. I asked my OC what he expects from Zofigo. He told me it should extend my life by two years. I said, "from when? Today or yesterday? He said from the time that I might die without it. Who knows. Zofigo is supposed to keep the bone mets from getting larger, may even reduce the size. After I have had one of the many treatments I have had over the last 21 years. Yes, I was diagnosed in 1999 with PC and further diagnosed in 2013 with stage four PC. My friends always ask, "Did it work." The only way to know if something was beneficial is whether or not you are still alive. Presently I am on Lupron, Zytiga, dexamethasone, denosamob, I am now 75. Best wishes to you and your Father.
I’m due end of October so he’s a Scorpio, just like my mother! And if that’s any indication of my relationship with this kid, I’m screwed! 😂 Thank you for the kind and wise words!
The apple doesn't fall far from Grandma's naughty branch....Scorpios are supposed to be sexy people.....you'll have your hands full....... Enjoy him.....they grow fast....
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