Cryotherapy

[billy1950]

Has anyone had cryotherapy after recurrence after radiation? Would like to hear about your experience. Thanks!

[Tall_Allen]

See this article about results you can expect with salvage cryo, as well as other salvage therapies after primary radiation failure:

pcnrv.blogspot.com/2017/09/...

I urge you to explore other alternatives before deciding. The hard part is finding specialists with experience in those techniques. Where are you located?

[billy1950 in reply to Tall_Allen]

Hi...I am in Upstate NY above Albany...

[Tall_Allen in reply to billy1950]

You should get an Axumin scan and a prostate biopsy*. If negative for distant mets and positive for cancer in the prostate, it may be possible to get focal salvage brachytherapy. Paul Nguyen at Dana Farber in Boston or Michael Zelefsky at MSK in NYC would be good choices.

If the recurrence in the prostate is multifocal, consider the free clinical trial at NIH.

clinicaltrials.gov/ct2/show...

pcnrv.blogspot.com/2016/08/...

*the NIH trial provides a PSMA PET scan, an mpMRI, and a biopsy read by a skilled pathologist, all for free.

[Db999 in reply to Tall_Allen]

I’m no expert but was told although seeds are an option, they would have the least success rate bc it’s just more radiation ??

[Tall_Allen in reply to Db999]

Look at the chart. The column labeled bFFS (biochemical failure free survival) shows the success rate of each of those clinical trials. As you can see, "just more radiation" has higher success rates than than most ablative therapies. The reason for failure is often that not enough radiation was given the first time.

[billy1950 in reply to Tall_Allen]

Thanks for the info....wondering though about the 48% having grade 1 rectal or urinary side effects...seems kind of high. Also in the clinical trial I would need to be at NIH for sometime. Also wondering if I would be excluded due to having Atrial fibrillation.

BTW, where is NIH?

[Tall_Allen in reply to billy1950]

NIH is in Washington DC - they pay for travel. I completed SBRT across 10 days - 5 treatments, every other day.

Grade 1 means minor side effects. It means things like getting up to pee 3x a night, or having a lot of gas. As you probably know, most side effects after radiation are minor (Grade 1) and transient. It is the Grade 3 (serious) and Grade 4 (life threatening) side effects one worries about. Salvage focal cryo has about 16% Grade 3+ urinary toxicity vs about 6% for salvage SBRT.

There is no listed exclusion for afib. I know that IRE is ruled out for afib. Call them to find out for sure.

[billy1950 in reply to Tall_Allen]

Tall_Allen...Thanks for your help...will be looking into this!

[Longterm101 in reply to billy1950]

I can give you the info/contact at NIH if you decide to go that route

[billy1950 in reply to Longterm101]

Longterm,

Tall_Allen has sent me the info...thanks!

[Longterm101 in reply to billy1950]

Best of luck!!

[billy1950 in reply to Longterm101]

Longterm,

I read a number of your posts...how are you doing? Are you having both radiation as well as still on ADT?

Billy

[Longterm101 in reply to billy1950]

I start radiation next Monday

25 sessions of IMRT then HDR Brachy boost at foxchase

I’m on fermigon ADT

Psa was 17 at Dx and is now .09

I’m doing well

Minimal side effects from ADT

I wear an estradiol patch to help with hot flashes

[billy1950 in reply to Tall_Allen]

Tall_Allen,

I received an email back from the nurse administrator at NIH, she needs me to send her a lot of test results which I haven't had...can they be done there? I would not want a another needle biopsy- is there a fusion biopsy that I can get somewhere? I am not sure what kind of MRI would be done here in my town! I prefer a mpMRI which can be read by a specialist as you point out. I did inquire about getting an Axumin but since my PSA was below 2 the hospital that I called didn't guarantee that Medicare would pay for it...

Thanks, Billy

[Tall_Allen in reply to billy1950]

I think you should ask them that question. If they can't do it, you can probably get an mpMRI-targeted biopsy at Yale or in NYC. The cancer has to be "histologically confirmed" - otherwise how do you know whether the rise in PSA is from the local cancer, from a distant metastasis, or from prostatitis?

clinicaltrials.gov/ct2/show...

[billy1950 in reply to Tall_Allen]

Tall_Allen

I talked with Theresa (nurse). She explained the protocol and she said most of the tests can be done there at NIH.

I am assuming that you were in the clinical trial. Could be wrong.! You had written that you had SBRT over 10 days at NIH. If you are in the trail, I would interested in hearing how you are doing?

[Tall_Allen in reply to billy1950]

No, I had SBRT as primary therapy, not as salvage. I'm glad they can do the biopsy for you at NIH.

[Db999]

I had radiation failure a few months ago . Doc suggested Cryo, but I was going to Hifu. Same success rate and lower risk of side effects and re doable if necessary . Unfortunately last minute Pet Scan showed small lesion in lung so local treatment was no longer applicable.. but that was what I was doing .. The two gurus seem to be Dr Scionti and Dr Oravan . Good luck ..but double and triple check no mets ..

[billy1950 in reply to Db999]

Hi...thanks...where are those two doctors?

[Db999]

Dr Scionti is in Sarasota Florida and Dr Oravan is in Toronto . I liked em both but signed up with Dr Oravan .. actually scheduled procedure b4 it was canceled ...

[billy1950 in reply to Db999]

Would Canada accept our Medicare health ins. with a supplemental policy?

[ctarleton in reply to billy1950]

"Medicare doesn't generally pay for medical services outside of the United States and its territories except in extremely rare circumstances."

[Db999 in reply to billy1950]

No. Have to pay out of pocket .. but most insurance won’t pay for hifu anyway .. doesn’t have enough track record

[billy1950 in reply to Db999]

Would you have any idea of the approx. cost for Hifu?

[Db999 in reply to billy1950]

23800 in Toronto ..25000 in Florida

[Hidden in reply to billy1950]

I paid 25K out of pocket in 2016 but I am told that Medicare (and some insurance) will cover at least part of the cost now.

[Hidden in reply to billy1950]

There are any number of HIFU practices now in the US. Here's one in Boston:

info.greaterbostonurology.c...

Just google HIFU.

[billy1950 in reply to Hidden]

did you have HIFU? Did you have a recurrence after radiation?

[Hidden in reply to billy1950]

I had HIFU in Oct 2016. Conventional surgery was ruled out as I had had TURP surgery for BPH ten years prior. I was directed toward radiation but I chose HIFU instead. I live in AZ and got the HIFU done in SF by Dr Lazar.

[20PeteG16 in reply to Db999]

Dr. Stephen Scionti did my cryo in 2008; he has my recommendation.

PeteG

[billy1950 in reply to 20PeteG16]

Thanks ...where is Dr. Scionti

[Db999 in reply to billy1950]

Sarasota

[Hidden in reply to 20PeteG16]

Did you have any 'quality of life' issues after that cryo?

[20PeteG16 in reply to Hidden]

No, in fact for five years I participated in the Scoop Jackson Center QOL study. I had a catheter for two weeks, and started "rehab" within 3 weeks with a vacuum pump. Back to normal for 6 years.

[billy1950 in reply to 20PeteG16]

Pete,

I am thinking about Cryotherapy after they found a lesion (contained) in my prostate. How are you doing now? I understand that Cryo as salvage therapy after radiation can have side effects...

Thanks,

Billy

[billy1950 in reply to Db999]

Hi Db,

I'm not sure from your emails...did you have cryo or HIFU? How are you doing...

Thanks, Billy

[Db999 in reply to billy1950]

I didnt have either .. I had Cyberknife in 2016 and had a reoccurrence but it occurred outside the prostate so I couldn’t have anymore local therapy .. I was set up for HIFU in Toronto b4 we found the met ... I’m doing very well thanks .. Current PSA today was <.1.

[billy1950]

Thanks

[sandbergc9]

Hi billy1950

I had 43 radiation treatments in 2011. A year and half later 2013 I had recurrence and went cryo. 2018 thought I'd be getting my 5 year pass. No such luck. PSA had jumped to 2.6 and I had one major met and a few small mets. Rather than the ADT injections I chose an orchiectomy. PSA dropped to undetectable. Never the less I am on Zytiga and PSA is still undetectable and metastasis free! Good Luck - my experience

[billy1950 in reply to sandbergc9]

I am wondering if you had surgical castration and now have an undetectable PSA, then why are you still on Zytiga?

Are you having any SEs on it?

[sandbergc9 in reply to billy1950]

I joined this group to ask that question! After orchi PSA 0, Mets drop ! How is that cast resistant. They say zytiga increases success. Zytiga causes fatigue, exercising 10 minutes twice daily. Orchiectomy causes lose of libido!! LOL. Be well !!

[Hidden in reply to billy1950]

While the testicles produce testosterone, the adrenal glands above the kidneys also produce T. The zytiga can stamp that out.

[kmack57]

Hi Billy,

I tried salvage cryo from Dr. Onik in Florida and it did not work for me.

[billy1950]

kmack,

Did you first have radiation? What did you do as a result of the recurrence? How are you doing? Sorry I didn't get back to you sooner!