New developments, Xofigo, Xgeva

[chascri]

First week of April started experiencing pain in left femur area, thoracic spine and ribs, and front chest.. Initially controlled with Naproxen Sodium. Pain in femur has pretty much resolved. Pain in Thoracic spine, ribs, and chest has gotten much worse, now severe and continuous, requiring hydromorphone (2 mg every 3 hours) last week or so. Coughing causing pain in chest, ribs and thoracic spine.

Blood tests generally within normal range, PSA 1.14, Testosterone 17.  CT Scan and Whole body bone scan: Metastases in the sternum and thoracic spine have increased in size and number. Mild anterior wedge compression at T7 which may be metastatic. T 11 and 10th ribs are involved. Impression metastatic disease in left femur has improved, worsening metastatic disease in the thoracic spine and adjacent ribs. Referred to a radiation oncologist for Xofigo consultation. Expect to start Xofigo in a couple of weeks. Medical oncologist suggests starting Xgeva again. Currently still on Eligard injections every 6 months. Thinking I will start Xgeva again in view of first evidence of vertebral compression, despite all past bone density studies being normal and additional risks and side effects of Xgeva. Probably while doing Xofigo. Thoughts? 

Its not the years in your life that matter, its the life in your years. Live it!

[CERICWIN]

I'm currently on Xgeva injections monthly, Xtandi 120 mg/day, and Avodart for the cancer and mets.      I have continuous back pain plus pain from left femur, and from the prostate, also---(they couldn't remove my prostate) and just finished 20 radiation treatments to the prostate.

For pain, I take 60 mg extended release morphine in the morning, and then 30 mg in the afternoon and 30 at night---every eight hours.       For breakthrough pain, Dilaudid every three hours as needed---4-6-8 MG, as needed, depending on the pain level.         While my bone mets aren't very extensive, yet, they're in places which cause extreme pain, and my doctors put me on a palliative service for pain control back in August, 2014.

From what I've heard, Xofigo can help reduce bone met pain very quickly, but in the meantime I'm surprised that your doctor didn't give you an extended release painkiller for the constant pain, leaving the Dilaudid for breakthrough pain.

CERICWIN

[JoelT]

Really sorry to hear that the cancer is progressing.  Xofigo is a good idea and should provide you with relief fairly quickly.  You should ask the doctor how concerned to be about the spinal compression.  Should it be dealt with more quickly as opposed to waiting for the Xofigo to e arranged?  Spinal compression can be VERY serious.

Joel

[chascri in reply to JoelT]

Thanks for the suggestion Joel I checked with my medical oncologists. He said the compression shown on the bone scan was very mild, but if the pain got got worse he would order an MRI.

I am trying to decide whether to restart the Xgeva now or after I finish the Xofigo. Thinking it might be best to wait until I finish the Xofigo treatments so as not to compound the side effects of the two. What do you think?

I increased the frequency of the Hydromorphone to 2 mg every two hours instead of every 3 hours. Working much better. Keeping the pain at about a 2 or 3 level now. Also have stopped all exercise and activities except bocce for the time being.

[JoelT in reply to chascri]

The clinical trials for Xofigo were executed with what is termed as the standard of care. This means that the men in the trials who received Xofigo also, a the same time, had hormone therapy along any bone treatments (Xgeva, zoldronic acid etc.) they were having. I would recommend that you do go back on the Xgeva while you take Xofigo.

Joel

[DFZ4835]

Looks like a good plan. The Xgeva will keep your bones strong and the Xofigo will releave the pain and it attacks the lesions in the bones. You could also try CBD to help with the pain. Look at ( hemplifetoday.com ) to see if you would be interested. It helps my pain all day without opiate pills.

Dennis

[chascri in reply to DFZ4835]

How about other side effects? I don' like being foggy headed or lethargic, which I get with the Hydromorphone.

[Magnus1964]

Why did you ever stop xgeva? I had bone pain in my hip. A bone scan showed a problem. I had external beam radiation and was told I would be on xgeva to prevent any further metastatic disease to the bone. I thought that was the idea behind xgeva or am I wrong? 

[chascri]

 My understanding is it is supposed to strengthen the bones and help prevent osteoporosis and bone fractures and compression.  I had two injections but I started having back pain from it and I was concerned about all the side effects from it.   My oncologists at the time read some studies that caused him some concerns as well so we stopped it. My bone density studies have always been normal and until  now scans  had not shown any evidence of compression or fracture. Now with scan evidence of compression I think I will start it again.

[JCRush]

I have extensive bone mets to pelvis, spine, ribs, and now my left femur. I have been on Xgeva now for nearly three years. Last year I had Xofigo while I was also on Xtandi. I have yet to have Taxotere. Taking both at the same time stopped the progression of my mets for a year. Unfortunately my last bone scan showed progression and I am now on Zytiga. I never experienced pain relief from the Xofigo though I know that is normally the reason it is given. Instead it increased throughout 2015. I am now on a 75 mcg Fentanyl patch which I can change every 48 hours if I choose and 30 mg oxycodone for breakthrough pain. Whereas it did not give me pain relief, I do feel it did work with the Xtandi to prevent the spread of my bone mets. The Xofigo caused some nasty side effects on the last two doses, the main one being very nauseous and causing the loss of my appetite which has never returned. I dropped 50 pounds, going from 207 to 156. Even so I feel it did me some good.

[chascri]

What has been your experience with Xgeva? Did it prevent osteoporosis, bone fractures and compression when you had mets? Did it relieve bone pain caused by mets? Did you experience any of the bad side effects of Xgeva? Since the Xofigo didn't give you pain relief could it be the bone pain you were experiencing was caused by bone fractures or compression and not the mets. While Xofigo would relieve pain caused by the tumors themselves, I don' think it would do anything to relieve pain from bone fractures or compression caused by mets. As I understand it Xofigo kills and shrinks tumors and stops the resulting pain but other treatment maybe required to fix bone fractures and compression which cause pain.

[JoelT in reply to chascri]

chascri,

You are correct. Xgeva will not do anything for any pain resulting from fractures or compression. In the clinical trial it did help prevent osteoporosis, it also significantly improved median bone metastasis-free survival by 4.2 months compared to placebo and significantly improved time to first occurrence of bone metastases.

[JimVanHorn]

Hi Joel, I'm new to this site, have had metastatic prostate cancer in my bones for over 5 years with minimal side effects (Xgeva and Eligard) and 72 radiations. At times I have severe bone pain that is transient (day to day) and I find that Timed released Tylenol (8 hour 650mg) taken with other stronger pain relievers helps sustain a pain threshold for a longer time than just the one strong pain reliever. Sometimes I use two of the tylenols without using the stronger meds with the same results. The onset is about a half hour though.

[DFZ4835 in reply to JimVanHorn]

Jim please be careful with the Tylenol. Going beyond the suggested daily Tylenol can run your liver. Cancer with mets is a full cup you don't need liver failure too.

Dennis

[Victorq1 in reply to DFZ4835]

I agree

Tylenol is a strong liver toxin

and god forbid to have any alcohol

even beer or a small glass of wine with it .

Acetaminophen (Tylenol ) should not be on the market

without really strong warnings about side-effects !

And you might be amazed

here in Mexico

with about 80 pro-cent alcoholic men

there is usually no warning on the label ...

[Wifeinjamul]

Hi Joel, I been reading all the comments on xofigo with interest. My husband is currently waiting for his blood counts to come up before the sixth and last infusion of xofigo. He has continued with Lupron and Xgeva injections every three months while having the infusions. He has responded very well to xofigo. It has improved his quality of life from the first infusion significantly. He was able to stop using his walker and cane and work in his garage again. Very encouraging for someone who has CRPC Mets to 99% of his bones. He also had a hip fracture just prior to starting xofigo. He was able to reduce his break through pain med to once a day (he still needed the fentanyl patch 75 mcg every 72 hours). He has slight nausea easily handled with zofran or compazine. We are grateful for the quality of life and the pain relief he has had for the past 5 months. BUT, now the the transient pain is back with a vengeance. After the last xofigo treatment (IF there is one), a bone scan will be done for possible spot radiation for pain control . I hope this helps someone else in their journey .

Wifeinjamul

[Kevinski65 in reply to Wifeinjamul]

I have had PCa for going on 6 years. I've been on Lupron and Xtandi with a yearly Zometa treatment for bones. I was Gleason 9, M1 stage, PSA 31, doubling time 5 months, 3 bone Mets on spine and scapula. I have pain but I took aspirin and an antidepressant called norpramin (desimpramine). This tricyclic antidepressant slows prostate cancer and blocks some of the pain. Aspirin slows prostate cancer and reduces inflammation. Inflammation plays a big role in matastasis. I take Zyflamend for prostate which you can get online at Amazon. It's being studied at Washington state of. It's an herb combo. Depending on genetics Lupron and Xtandi has put the fire out so to speak. PSA has been 0.02 for 3 years. I have osteopenia which I take D3 and calcium. To help with the side effects, neurontin and Klonopin at night. I've avoided narcotics because with what I'm doing there's been little pain. I take tagamet for stomach if it gets irritated from aspirin. Tagamet slowest prostate cancer. Check these out online. I've toyed with the idea of taking something like Ritalin but rely on coffee to defeat fatigue and walking. I get all the same side effects; sweats, fatigue, depression, liss of labido etc. I'm 65 now. I've read that lipitor and those erection medications like Viagra slow prostate cancer. That's about it, I sit in front of a fan and A/C for sweats. It sucks but I get to see my grandchildren...I'm retired. Good luck to all.