radium 223: looking for info on side... - Advanced Prostate...

Advanced Prostate Cancer

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radium 223

Mcrpca profile image
69 Replies

looking for info on side effects. We are 5 hours from a treatment center and would like to be comfortably at home for any side effects. I’d love to hear side effect experiences for this treatment. Thanks

69 Replies
GP24 profile image
GP24

The side effects cannot be compared with a chemo. You will have no problem travelling the 5 hours after the treatment. Here is a presentation about Xofigo/Radium223 to provide more background on this therapy for you.

library.mirrorsmed.org/sess...

Mcrpca profile image
Mcrpca in reply to GP24

Thank you so much. This information helps tremendously with our travel plans!

Mcrpca profile image
Mcrpca in reply to GP24

The link you sent was great. Very reassuring. He fits the “perfect patient” profile perfectly.

Leps profile image
Leps in reply to GP24

For whatever it's worth, I recently completed six doses of radium 223 with zero side effects. I hope the same for you.

Mcrpca profile image
Mcrpca in reply to Leps

Me too. Thanks. I’m so glad you had a good experience. Were/are you on bone enhancers?

Leps profile image
Leps in reply to Mcrpca

Yes, I have been on on denosumab for three or four years.

Seasid profile image
Seasid

I hope that your husband is on bone strengthening medication. He should be.

Mcrpca profile image
Mcrpca in reply to Seasid

he’ll be starting that before the radium treatments. Thanks for the support.

Seasid profile image
Seasid in reply to Mcrpca

My MO warned me against not starting bone strengthening agent before Xofigo. Alpha radiation can rip apart bones. You should take this seriously.

Mcrpca profile image
Mcrpca in reply to Seasid

It may in fact happen simultaneously. Logistics are difficult. Thanks for the warning.

Seasid profile image
Seasid in reply to Mcrpca

What will he get?

Seasid profile image
Seasid in reply to Mcrpca

Xofigo▼ (radium-223-dichloride): new restrictions on use due to increased risk of fracture and trend for increased mortality seen in clinical trial

Now only authorised for use in patients with symptomatic bone metastases and no known visceral metastases who have had 2 previous systemic treatments for metastatic castration-resistant prostate cancer or who cannot receive other systemic treatments. Do not use in combination with abiraterone acetate and prednisone/prednisolone.

gov.uk/drug-safety-update/x...

GP24 profile image
GP24 in reply to Seasid

The bone strenghening agents are required if you take Zytiga or Xtandi during the Xofigo therapy. "can rip apart bones" is too drastic. They observed more fractures with Zytiga when no bone strenghening agents were combined.

Mcrpca profile image
Mcrpca in reply to GP24

He won’t be taking Zytiga or Xtandi at this point. It’s my understanding that they are more effective on solid organ mets and he doesn’t have those yet.

GP24 profile image
GP24 in reply to Mcrpca

When there are bone mets one should combine Zytiga, Xtandi or Erleada - provided you do not have a Xofigo therapy. Studies show a benefit for the combination.

Seasid profile image
Seasid in reply to GP24

I totally gave up with the idea of using Xofigo. I am osteoporotic i am not using bone strengthening medication and I may use AC225 PSMA j591 (Alfa radiation) as a systemic therapie.

GP24 profile image
GP24 in reply to Seasid

Ac225 causes dry mouth which is a bad side effect. In Melbourne you could take part in this study, which combines Lu177 and Xofigo: clinicaltrials.gov/ct2/show...

anony2020 profile image
anony2020 in reply to GP24

Does denosumab slow growth as well?

GP24 profile image
GP24 in reply to anony2020

No, it just makes the bones harder so fractures are not that likely.

MateoBeach profile image
MateoBeach in reply to anony2020

if you do not yet have bone mets, then denosumab or Zometa May alter the bone micro environment to reduce risk of new bone mets being established. Also plays well (synergistic) with celecoxib.

Seasid profile image
Seasid in reply to MateoBeach

I am myself not 100 % sure in this?

Do we have some trial proving this with denosumab?

I believe that TA said that they were just hopes couple of years ago that this is true, but didn't substantiate?

I know that it is proven i clinical trial that zoledronic acid with celebrex extends life 20%? If I good remember, but not sure.

Seasid profile image
Seasid in reply to Seasid

Celecoxib or celebrex

Seasid profile image
Seasid in reply to Seasid

I found this article about Brest cancer. The reasearch was done in Basel, a home of Novartis the producer of zoledronic acid infusions:

Bone-Targeted Agents and Metastasis Prevention

Robert Coleman

Abstract

Simple Summary

Bone metastases are common in cancer patients and the role of bone-targeted agents in prevention of metastasis have been evaluated in multiple clinical trials over the past 20 years. Results show that in breast cancer the use of adjuvant bisphosphonates (and possibly denosumab) reduce bone metastases and breast cancer deaths in postmenopausal women. These effects are in addition to the benefits associated with the use of standard adjuvant endocrine, cytotoxic and targeted treatments with prevention of one in six breast cancer deaths at 10 years. Similar benefits have not been observed in other cancers that typically spread to bone, such as prostate or lung cancers.

ncbi.nlm.nih.gov/pmc/articl...

Seasid profile image
Seasid in reply to Seasid

Bone-Targeted Agents and Metastasis Prevention

Robert Coleman

Additional article information

Abstract

Simple Summary

Bone metastases are common in cancer patients and the role of bone-targeted agents in prevention of metastasis have been evaluated in multiple clinical trials over the past 20 years. Results show that in breast cancer the use of adjuvant bisphosphonates (and possibly denosumab) reduce bone metastases and breast cancer deaths in postmenopausal women. These effects are in addition to the benefits associated with the use of standard adjuvant endocrine, cytotoxic and targeted treatments with prevention of one in six breast cancer deaths at 10 years. Similar benefits have not been observed in other cancers that typically spread to bone, such as prostate or lung cancers. Biomarkers that can predict patient benefit from the use of bone targeted treatments in the adjuvant setting are being evaluated. Currently, tumour expression of the transcription factor, MAF, seems to be the most promising biomarker; benefits from adjuvant bisphosphonates are seen in the 80% of patients with normal levels of expression irrespective of menopausal status, while over-expression is associated with a poor prognosis and a higher rate of visceral metastases.

Abstract

The use of bone-targeted treatments has transformed the clinical care of many patients with metastatic breast cancer. In addition, due to the profound effects of bisphosphonates and denosumab on bone physiology and the bone microenvironment, the potential of bone-targeted agents to modify the process of metastasis has been studied extensively. Many adjuvant trials with bisphosphonates in early breast cancer have been performed. Variable outcomes in terms of disease recurrence have been reported, with any treatment benefits apparently influenced by the age and menopausal status of the patients. The Early Breast Cancer Trialists’ Collaborative Group (EBCTCG) conducted a meta-analysis of individual patient data from all available randomised trials to investigate this observation further. This meta-analysis failed to show any benefits of adjuvant bisphosphonates in premenopausal women, but highly significant improvements in bone recurrence (RR = 0.72; 95% CI 0.60–0.86, 2p = 0.0002) and breast cancer mortality (RR = 0.82; 95% CI 0.73–0.93, 2p = 0.002) were seen in the 11,767 postmenopausal women included in the meta-analysis. As a result, clinical guidelines recommend the incorporation of adjuvant bisphosphonates that inhibit osteoclast activity into routine clinical care. Denosumab, which has similar effects on bone cell physiology, appears not to consistently influence disease outcomes, perhaps suggesting that it is the “off target” effects of bisphosphonates on immune function and the biological processes involved in metastasis that are important. Predictive biomarkers beyond menopause are being sought and assessment of the transcription factor MAF (mesenchymal aponeurotic fibrosarcoma gene) appears to identify patients able to benefit from the addition of a bisphosphonate to standard adjuvant anticancer therapies.

Keywords: breast cancer, adjuvant therapy, bisphosphonates, denosumab, biomarkers, bone-targeted treatments

CAMPSOUPS profile image
CAMPSOUPS in reply to Seasid

cancernetwork.com/view/zole...

Mcrpca profile image
Mcrpca in reply to Seasid

I wonder if this only applies to the BRCA variants?

Seasid profile image
Seasid in reply to Mcrpca

Good question. The article is from this year.

I will probably have to start with some bone strengthening medication soon.

I would rather take zoledronic acid than denosumab, but I believe that they will want to give me denosumab as the subcutaneous injection is easier for them to administer than the zoledronic acid infusions.

I am not very keen to get anything for my osteoporosis yet. The Stamped trial didn't prove any survivor benefits for zoledronic acid infusions only, and I don't want to take celebrex. I will try to eat an apple and an avocado a day to get some boron with food, between 1 to 10mg per day and I should walk more.

CAMPSOUPS profile image
CAMPSOUPS in reply to Seasid

cancernetwork.com/view/zole...

Seasid profile image
Seasid in reply to CAMPSOUPS

I will not jump into any swiss medication just because some trial proving that it is useful.

Your information is from 2016. I don't want to take celebrex. I am taking more than enough other medication, plus I don't want to change anything if it is working for me. I don't have any visible mets yet. I can wait until the mets start coming, and they will at some point in the future. I will then reconsider my desission in a light of the latest information. I am not against zoledronic acid, i just don't want to start.

Thanks for the link. I believe that my MO would not prescribed celebrex and I don't even see him, he doesn't show up, only the young doctor. Here where I am the most important is that God is with you. If you are on ADT alone for 4.5 years and you have no visible mets on the PSMA PET CT scan than must be a reason for that and it is better not to change anything.

CAMPSOUPS profile image
CAMPSOUPS in reply to CAMPSOUPS

This link just showed the trial that reported Zometa + Celebrex.

You had mentioned you couldn't remember which trial made the report.

In no way, shape, or form would I ever be recommending you "jump" into anything.

Sorry if there was a misunderstanding.

Seasid profile image
Seasid in reply to CAMPSOUPS

It wasn't a misunderstanding. I am just simply saying that I am a slow mover and I will reconsider my desission in light of the latest information ones I will make a decision.

CAMPSOUPS profile image
CAMPSOUPS in reply to Seasid

Good for you. I am the same. I think.

Seasid profile image
Seasid in reply to CAMPSOUPS

At the time of my diagnosis I was very interested about Xofigo (i had 15 mets in my spine).

I could not get it as Xofigo is indicated for bone pain plus I was told that I have to pay 60k A$ for Xofigo and I didn't have that money at that time.

I started to save money and I hardly bought anything since then.

Now when I could afford it, i realized that I don't really need it mainly because i don't have visible bone mets and no resulting bone pain.

I learned about different aspects of Xofigo therapy what I didn't know 4 years ago.

I also learned that if I take Abiraterone plus Prednisone than I will 100 % need to be on denosumab or Zometa. Plus there is a risk with Xofigo that it will penetrate not only where the cancer is but also to other changes in my bones related to let's say osteoarthritis (i am not sure in this) etc.

Therefore using Xofigo requires luck. My MO said that alpha radiation of Xofigo can result in fractures of the bone therefore he was recommending to start denosumab for that reason before I am castrate resistant. I didn't want that.

I may need Xofigo, but why would I use Xofigo if in the future Ac225 PSMA therapy in a form of J591 will be available?

AC 225 PSMA is also alpha particle emiter and it goes only where the PSMA positive cancer is, not just in my bones but elsewhere in my body. It is a true systemic therapie.

anony2020 profile image
anony2020 in reply to MateoBeach

Yes

Seasid profile image
Seasid

Why not earlier? I am not an expert but I believe that the bone strengthening takes some time to work?

What will they inject?

GP24 profile image
GP24 in reply to Seasid

Bone strenghening agents have bad side effect: necrosis of the jaw. I would not take these if not necessary.

urotoday.com/video-lectures...

Muffin2019 profile image
Muffin2019 in reply to GP24

I have been taking it for 2 years and no issues, even had a root canal without an issue.

Mcrpca profile image
Mcrpca in reply to Muffin2019

Encouraging.

Seasid profile image
Seasid in reply to Muffin2019

What did you take? Zoledronic acid infusions once a year or Prolia (60mg denosumab) injections every six months?

Muffin2019 profile image
Muffin2019 in reply to Seasid

Three month xgevea, infusion of jevtana every 3 weeks, seventh one this week

Mcrpca profile image
Mcrpca in reply to Muffin2019

How are you doing?

Muffin2019 profile image
Muffin2019 in reply to Mcrpca

Scans show improvement, mass in bladder is gone, the lymph nodes are gone, the lung nodes is gone, the liver lesions are still there but the largest has decreased in size. The PSA has gone from 49 to 25.7 so it is working, just going to take time I guess. I feel good after 5 days after the infusion, screws up your taste buds and little fatigue but after a week things get back to normal. Still have PSA stress, having a bone scan to check on a suspicious bone spots that maybe found on the CT scan. Back in the treadmill a couple of times a week since it is cold outside and staying away from people due to covid surge. A past co worker has it and the one that works with her also had covid. Fully vaccinated but with the chemo not going to take a chance. Keep safe and be careful.

Mcrpca profile image
Mcrpca in reply to Muffin2019

You too.

MateoBeach profile image
MateoBeach in reply to GP24

Incidence of ONJ is around 1-2% if dentition well cared for. Incidence of painful bone mets by end stage mCRPC is 90%. Reconsider?

Grandpa4 profile image
Grandpa4 in reply to Seasid

the mechanism whereby these drugs prevent fractures is by getting rid of the weak spots in bone trabeculae. Trabecular bone breaks at weak spots where the body is remodeling. This remodeling process is stopped very quickly. Yes over years bone densities might climb but this is not why they reduce fractures by 50%.

Seasid profile image
Seasid in reply to Grandpa4

I am osteoporotic and was just reading some posts at the osteoporosis section of our site and some people have even difficulty breathing after 5 or 7 fracture and they shrink in size 10 inches. They have to commute with e-scooter.

Seasid profile image
Seasid

You should convince my MO, not me.

GP24 profile image
GP24 in reply to Seasid

Seasid,

if I would get into this situation, I would take a medication way out of the box. If you take estradiol patches and do exercise, your bone mass will increase and you do not have to worry about fractures due to ADT. As a side effect they will reduce hot flushes and improve your mood. These problems are caused by low estradiol as a result of low testosterone.

Mcrpca profile image
Mcrpca in reply to GP24

You obviously aren’t “in this situation.”

GP24 profile image
GP24 in reply to Mcrpca

I have lymph node mets only and can use bicalutamide monotherapy which does not decrease the bone mass.

Mcrpca profile image
Mcrpca in reply to GP24

We’re about 6-7 years down the road from that. You might be interested in reading our profile.

Grandpa4 profile image
Grandpa4 in reply to GP24

yes but estrogens probably increase the risk of heart attacks and at our age on ADT that is significant.

Seasid profile image
Seasid in reply to Grandpa4

Some people are not on ADT.

Seasid profile image
Seasid in reply to Grandpa4

It looks that estrogen is not recommended if you have a BRCA genetic mutation. I may don't have it, but you never know.

GP24 profile image
GP24 in reply to Grandpa4

You only need to increase the level of estrogens to the level you had before starting ADT. It is not dangerous to have a normal estrogen level. Patches avoid problems with estrogens and cardiovascular risks too.

Seasid profile image
Seasid in reply to GP24

I should convince the endocrinologist about that in February when it is scheduled to see him.

MateoBeach profile image
MateoBeach in reply to Grandpa4

Estradiol patch (topical) does not increase CV risks as demonstrated in the PATCH trial.

Tall_Allen profile image
Tall_Allen

I've known a few guys who had it. None had any side effects, but those with significant bone marrow penetration may experience anemia and other blood effects. In one, his bone pain increased for one week before it completely disappeared. Be sure to be using monthly Zometa or Xgeva. It's a good time to have Provenge too.

prostatecancer.news/2021/02...

Alpha radiation doesn't penetrate skin, and other radiation is low. Probably good to sit on opposite sides of the car for a long drive. He should always sit down and flush several times when using the toilet, and use gloves to clean.

Mcrpca profile image
Mcrpca in reply to Tall_Allen

He’s going to be on Zometa as soon as it’s ordered. We’ll do Provenge too but I’m not sure about the timing. To add to the complexity of decision making, my husband now has Stage 4 Alzheimer’s 😢 Trying to balance comfort and benefits with personal agency

Tall_Allen profile image
Tall_Allen in reply to Mcrpca

Argh!

MateoBeach profile image
MateoBeach in reply to Mcrpca

Good for you. Excellent plan to add Provenge if possible, though understand it complicates logistics and this must be balanced. Take good care of yourself. 💕🙏

tango65 profile image
tango65

This is the information from the FDA

accessdata.fda.gov/drugsatf...

Budvar profile image
Budvar

My dad died on radium 223. But it wasn't what killed him. He had bad side effects from the bone strengthening meds. (Zometa) Also piss poor care. He was very late stage diagnosed with nearly 4000 psa 6 years ago.

Mcrpca profile image
Mcrpca

I’m so sorry. My son-in-law’s dad died of PCa. His PSA was 2.4 when he was diagnosed by DRE, almost by accident. It’s a very complex disease with lots of moving parts.

Foldem profile image
Foldem

I finished in August. No side effects, and being off Xtandi/Zytiga cleared my brain fog nicely. Good luck!

OldWarrior profile image
OldWarrior

lots of good responses already. I had second Xofigo infusion 4 days ago. No side effects at all day 1-2. Day 3-4 a little spike of bone pain (same last time). That’s about it. Started Zometa two weeks before first treatment. Felt crappy for 3-4 days. So for me the bone strengthened agent had more side effects than the Xofigo.

Adlon57 profile image
Adlon57

I have Schwannomatosis NF3, which I have had since 14, I am aged 66, finally diagnosed in 2017, I have had surgery over my life for schwannomas, benign tumours, it is a very rare condition, I have NEVER been in contact with ANYBODY with my condition! In 2019 I had a schwannoma on my prostate [about the size of a baked bean] I showed my GP in February 2020, as it was affecting my urine flow, I had a second one in March 2020, just before 23rd March was isolated for Covid 19. In June 2022 was given a biopsy for prostate Cancer, I have a Adenocarcinoma Grade 7, was told it had been "caught early" I am due 20 sessions of radiotherapy starting 28th December 2022. What I am really scared is the radiotherapy going to aggravate my system, causing more schwannomas, especially around the prostate? Those schwannomas are still there although now in a much reduced size, from personal experience, I have learnt that my schwannomas turn into a gelatinous form after a short period due to my age mid 60's! I have asked many medical specialists about this but due to the rarity of this condition, no comeback?

Har036 profile image
Har036

My husband received xofigo approximately 6-7 months after starting xgevea. He’s had issues with anemia and very low blood counts and this continued during his xofigo treatments. He was referred to a hematologist and received treatment and was able to successfully complete all six treatments. His scans since have been stable with no new Mets or advancement of current metastasis. (Treated May 2021-Oct2021)No problems with jaw issues-he’s been monitored for this as well.

Mcrpca profile image
Mcrpca in reply to Har036

Reassuring. Thanks for the comments.

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