Xofigo question

[VisorF9]

Hello everyone,Does anyone have experience with ending Xofigo infusions early and possible consequences?

I have completed three infusions with fourth scheduled next week blood test (today) permitting.

Since beginning Xofigo I am experiencing increased pain, at times significant. Zero pain prior to Xofigo.

Quality of life has decreased, in part because family and friends are afraid (radiation) to be in my presence for weeks following infusions.

I am currently being treated with Erleada and Trelstar with diminishing effect, PSA having risen from 0.30 to 4.37 March to July this year. PSA has begun to decline somewhat over last 6 weeks, first to 3.97, then 3.20. Will see what it is later today following the blood test.

I have asked about treatment options following Xofigo previously here and thank you for your replies.

I was diagnosed PCa stage 4 eighteen months ago with according to bone scan reports "innumerable" mets.

Will greatly appreciate any thoughts you might share concerning stopping Xofigo at this time.

Thank you.

[God_Loves_Me]

It is good path.

Here is the content : prostatecancer.news/2021/02...

try to ask Xtandi or Nubeqa if you have more side effects from apalutamide. Another good combinations with xofigo + docetaxel

PSA will increase during treatment because PSA also report dying cell but same time ALP will stable. Here is content to read for PSA trends during xofigo treatment,

jnm.snmjournals.org/content....

[VisorF9 in reply to God_Loves_Me]

Thank you so much. I will read the attachments and speak with my oncologist about the options you name.

[Tall_Allen]

The pain is caused by inflammation and should be temporary - it is a sign that it is working. You may find that a Medrol Dose Pack affords relief. There is no danger in being in close proximity to you because alpha radiation cannot pass through your skin. One can even hold a bottle of Xofigo in one's bare hands. The only danger would be from contact with fecal matter.

[VisorF9 in reply to Tall_Allen]

I greatly appreciate your advice and will speak with my MO about a Medrol Dose Pack. Will also share with people close to me that Alpha radiation cannot pass through the skin. No one had shared that. In fact, the opposite. Warnings to keep distance for at least 7 days and perhaps to half life of Xofigo. Also blood test today has PSA at 3.37, up from most recent 3.20. Still down from the 4.37 first week of July. Thank you again. Feeling better about continuing with Xofigo.

[Tall_Allen in reply to VisorF9]

Just wash your hands well after you wipe yourself at the toilet and before touching any surfaces. Close the lid before flushing.

[VisorF9 in reply to Tall_Allen]

Definitely. I'm very careful about that. Also respect if people feel uneasy.

[CAMPSOUPS]

Tall Allens suggestion to try of course.

Also in light of how important it can be to stay on the treatment ask your MO about pain relief medication. Up to and including narcotics but keeping in mind inflammation reduction will be important.

[VisorF9 in reply to CAMPSOUPS]

I will do that. Thank you. Today is a particularly testy pain day. I hadn't considered inflammation. Imagine staying with treatments to conclusion can be a challenge for many.

[VitaminPea]

Other than bone pain did you experience any other side effects (e.g. low blood counts) from Xofigo?

[VisorF9 in reply to VitaminPea]

Feeling miserable (nausea, severe headache) for 24-48 hours following Xofigo infusion is the only other negative side effect. Blood tests all have been absolutely normal.

[VisorF9 in reply to VitaminPea]

Nothing concerning in blood tests. Some readings closer to the margins of normal, but MO unconcerned. Appreciate your question Vitamin Pea and apology for lengthy delay responding.

[Grandpa4]

if it is caused by inflammation you would think aleve might help. If it does and you are going to take it daily discuss protecting your stomach from it and watch your kidney function. Stay hydrated.

[VisorF9 in reply to Grandpa4]

Thanks Grandpa4. Aleve does help. Pain increasing in hips, legs and hands. Part of the journey I know. Doesn't help with the golf swing. Still getting out to the course and not prepared to give it up.

[j-o-h-n]

My opinion.......... if radiation is not an issue, keep away from the relatives anyway. No B.S. and more fun that way.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[VisorF9 in reply to j-o-h-n]

Will see a week tomorrow what MO has to say. Then infusion most likely. Leaning in that direction now. Not likely going for numbers 5 and 6.

[VisorF9 in reply to j-o-h-n]

Humour perhaps the best natural weapon. Haven't lost that. A bit off the wall and hesitated with this one, but had laughs from people I know well after saying "I have cancer. Want some?" Would never issue that one cold to someone struggling and who I don't have personal connection with.

[j-o-h-n in reply to VisorF9]

It's free.........

Good Luck, Good Health and Good Humor.

j-o-h-n

[God_Loves_Me]

VisorF9 What's update here ?

[VisorF9 in reply to God_Loves_Me]

Met with MO last week and he persuaded me to continue with Xofigo at least for infusion 4. Was to be that morning, but hospital failed to order and I'm now waiting additional 2 weeks. Also told the proverbial cupboard is now bare, following Apaludamide, Trelstar and Xofigo, except for tri-monthly injection of Xgeva to begin late October. Only treatment option remaining according to MO is clinical trial. Should be one before year's end. Thank you God_Loves_Me for following up with me.

[God_Loves_Me in reply to VisorF9]

Please let me know if you change the treatment, I am following you

[VisorF9 in reply to God_Loves_Me]

Will do. I'll go with the 4th infusion, after that, not sure at this moment.

[Seasid in reply to VisorF9]

You could do PSMA pet scan in order to ascertain that there is radiographic improvement.

[VisorF9 in reply to Seasid]

Thank you Seasid. I have spoken to both my urologist and MO about this and from what I understand PSMA pet scans are complicated in Canada, but then I've only been told about them in relation to simultaneously using Pluvicto which is approved by Health Canada, but only available in Vancouver and Montreal. I'm in Ontario. Also Pluvicto is not covered by provincial health insurance. My urologist hopes this will change very soon. In this country there are many cancer patients either terribly delayed in receiving absolutely necessary treatment, or they're not receiving it at all.

[Seasid in reply to VisorF9]

Thanks for the information. Here is the same or maybe even worse. I was diagnosed in April 2018 as polimetastatic with distant metastases in my neck and spine. I started Degarelix and after 2 months I received early docetaxel chemotherapy six cycles. My psa was 100 and Gleason score was 4+3.

My nadir psa was 0.12 and after around 4 years my psa was 1.2 and I had a PSMA pet scan at PSA 1.25 and my cancer was only visible in 95 % of my prostate therefore we SBRT it with high precision MRI Linac 38Gy. My psa dropped to 0.25 six months after the SBRT radiation. Before the irradiation the psa was 1.4 and just after the SBRT radiation the psa was 1.2. I stayed all the time on Degarelix injection. And since the start of the year 2024 I added bicalutamide when my psa increased to 2.5. My psa is still 2.5 now and hoping that it will stay that way. I will inform what is happening in the future.

[VisorF9 in reply to Seasid]

Thank you. I am learning as I read. Should add I have rejected chemo. Watched my wife struggle with chemo for metastatic lung cancer a few years ago. That and what was described as prophylactic brain radiation which virtually destroyed much function of her central nervous system makes chemo impossible for me. I will update as possible.

[Seasid in reply to VisorF9]

I had early docetaxel chemotherapy six cycles. It is probably too late now?

[VisorF9 in reply to Seasid]

I suspect so. Urologist appears more positive than MO about additional treatment.

[Seasid in reply to VisorF9]

I am not a doctor just follow what they say and ask for a second opinion if you do not feel comfortable with the suggestions..

[londoncyclist48]

I have just started Xofigo treatment on 17th October 2024. I'm not worried about the radioactive risk that everybody keeps on talking about.

My question is this. Is there anybody here who has actually got some pain reduction benefit from it? There's a lot of information online about the actual treatment but, so far, I have not read anything online in which somebody has said "I had Xofigo and it works really well". I'm 5 days in and hoping for a miracle. I haven't had a good night's sleep in 12 months.