Anyone have experience with Proton therapy...? The Dizzying array of radiation techniques out there promising to minimize SE's and providing more accuracy becomes overwhelming whether it be Stereo Tactic, Image Guided...etc..etc. Proton Beam is rather new in the field.... comments? Experiences??
Does Proton Beam therapy have any pro... - Advanced Prostate...
Does Proton Beam therapy have any proven advantages.
Written by
Tommyj2
To view profiles and participate in discussions please or .
Read more about...
37 Replies
•
There hasn't been any randomized trials yet, but the numbers don't look any better (in spite of what you may read about Bragg peaks):
pcnrv.blogspot.com/2016/08/...
Thanks TA... Jacksonville results are less than impressive... No good reason, at this point, to pay more for similiar results..
• in reply toTommyj2
I agree with TA. The benefits touted are all theoretical. Things like high Linear Energy Transfer and Bragg peak will give you some introduction into radiation physics but Linear Energy Transfer doesn't transfer into better results.
Protons are significantly better for some cancer treatments. But those alone are not enough to pay for the very expensive equipment so it is marketed for cancers where is has no benefit like prostate cancer.
I was told one advantage is that the radiation stops at the target and doesn't also radiate any tissue behind the target whereas all other radiations go all the way through the body( radiate tissue behind the target).
One big disadvantage is the cost. Insurance will always try to switch you to a cheaper treatment.
I was told by a resident at UCSD that Proton for PCa provides no benefit because the doses used to treat this cancer are relatively small. The advantage comes in use with other cancers that require higher doses than PCa.
Just read recent study results re: side effect profile of PBT which cited FAR lower SE profile with PBT..... THEN I came upon this older post of yours and AGAIN had to adjust my thinking...... one could be driven crazy : ) WHO do you believe?? How much time can you research before you make a decision?? One could get paralyzed if they wanted to be absolutely sure that they are choosing the right treatment.... Fortunately PCA usually offers a fair amount of time for deliberation..... If I had it all to do over again today I think I would look more closely at the available forms of Focal Ablation ( HIFU, Cryo, Laser) or SBRT..... HIFU was not available when I was treated except as a "pay as you go" tx out of country....
Here's another conflicting study showing rectal bleeding has a higher incidence with PBT > IMRT. Yes those options you mention are good for T1-T2 tumors as an alternative to surgery, but once escapular I would go with HDR-BT + IMRT.
healio.com/hematology-oncol...
Like I said... one could get paralyzed waiting to be ABSOLUTELY sure that the treatment they chose is the right one for them..... Just as one could go bankrupt trying to do everything "right" to treat a recurrence..... I look at the diets and supplements that some guys are on and I simply could not afford to eat that way or buy that many supplements..... I'm still wondering how I will afford Zytiga when my time comes if the manufacturer doesn't help out..... as if the stress of the disease isn't enough.... the stress of affording to keep it under control adds another substantive burden....
I finished 39 proton treatments (78gy) at Provision (Knoxville), on 15aug17. So far, no side effects, but during treatment, I took Flomax.
Bob, G 4+5, proton, adt.
I also had 39 Proton treatments at Provision Proton in Knoxville. I finished mine in Aug. 2015. Have had no side effects and like Bob I took Flomax at the time but don't take it now. My G was 3+4. Just had my psa run and it was still 0.18. Had the hydro jell instead of joining the brotherhood. Was 71 yrs old at the time. Medicare and BCBSH-F paid it all except for Jell. Have been told that they pay for the jell now. For me it was the only way to go. Call an inquire and they will send you all the information for your research. Don.t regret having treatment and would highly recommend if you qualify.
Thanks for the reply....though I don't know what you are referring to when speaking of "Hydrojell...rather than joining the brotherhood"??.. Glad the Tx seems to be working well for you.
SpaceOAR Hydrogel. To protect the rectum during radiation. Medicare now covers it. Other insurances are slowly following Medicare's lead. spaceoar.com/
The brotherhood is "Bob", brotherhood of balloons. If you have the SpaceOAR Hydrogel they don't have to use a balloon each treatment. Only way to go. Good Luck.
Hmmmm... is this something reserved for Proton Beam therapy?? I never had any protection for my rectum when I had EBRT or is this something that they have started doing in the past few years for ALL radiation therapy to minimize damage to adjacent tissues?
Their all good, research, there is one that is the best for YOU. Hit the computer, compare to your condition. One will be the best.
Get advocating for yourself.
SpaceOAR only approved in USA last year. I had Proton Beam Therapy in Seoul, South Korea in 2013. 28 radiations. Had the balloon as SpaceOAR not available yet. Many radiation patients in Australia having SpaceOAR inserted before radiation of the prostate. If I had had SpaceOAR before my PBT, I would have avoided a very small radiation burn (size of my little finger nail) that resulted 6 months after radiation completed. It has NOT been a big deal. PBT definitely protects the other organs from radiation damage. The reason for the slight burn was because the rectal wall is pressed against the prostate by the balloon. Overall cost of 3 months in Seoul was US$60K including accommodation, driver, etc. Cost of conventional radiation in Australia would have been US$33K.
Present major multi-centre comparison study will highlight PBT strengths. I would have selected focal ablation of my tumours if I was diagnosed now. I explain all this and more in my book "An ABC of Prostate Cancer Today -2nd Edition".
Alan....
Were you able to get any of this reimbursed by insurance or was it all out of pocket?? Those kinds of dollars would have been outside my ability to pay were I to have gone that route..... If I were going to pay OOP probably would have opted for HIFU due to more reasonable price and cost/benefit ratio ( hard to get the full story on any of these treatments without REALLY doing your homework...which it appears you do..... I'm in the process of thinking which way to go now that my PSA is climbing again..... whether there is any way that I might be able to avoid ADT ( had conventional radiation once already)....next step ...more testing to find out where the cancer actually IS ( bone scan negative).... Unlike some here... I am limited entirely to what insurance will cover...anything else and I would be wiped out financially..... thanks for the response... You didn't mention, BTW, if the results were overall positive??? I'm presuming not entirely or you would not be part of this group ..no??
Hi Tommy. My treatment was entirely successful. My interest in this forum is two fold. I have a brother with Stage 4 mCRPC. Secondly, I am an active speaker at PCa support groups, Rotary, Men's Sheds etc. I am also writing my third edition of "An ABC of Prostate Cancer Today". I also do an intermittent newsletter that goes to 1000 support groups world wide.
I paid the full cost of my PBT in Korea. It knocked a hole in my finances, but other alternatives that I considered to be appropriate to my specific condition, were also going to leave me well out of pocket in Australia.
I won't comment on your condition as I haven't review your previous posts.
Alan.... I had some contact with you a few months back re: PBT and realized that I don't know how long ago you were treated.... it seems, since I've joined this forum, that no one is ever really out of the woods..... Best one can hope for is that the PCA keeps at bay long enough to be taken out by something less painful ( like a nice heart attack in ones sleep or passing into oblivion while on the operating table at age 87 : )..... But...if I were someone lucky enough to be returning negative psa values after a decade I guess I would pretty much consider myself " cured "....even though I now know better.... BTW....did you do anything along with the PBT... eg Brachy or ADT??
OOPS...sorry.... noted earlier posts that answered my questions....
Bob
Please be aware that protons are now being administered in an SBRT protocol. Several men on other forums have recently had proton therapy for prostate cancer done in only five sessions.
They participated in a clinical trial that is being conducted at some of the nation’s best known cancer centers. I think that you may now be able to get that therapy without participating in the clinical trial.
Of course, reducing the number of sessions should reduce the costs, and that may cause less issues with insurance.
Having worked in hospitals my guess is that they will simply raise the price of each individual session ( since the sessions are longer and the machine is in use the same amount of time)..ie...fewer patients...longer exposure times for SBRT.... Even so... I am interested in consulting with Radiological Oncology if my remaining cancer appears to be in locations that could profit from radiation and forestall the use of ADT..... thank you for the information and advice
Hi Tommyj2,
I had Proton Beam Therapy 10 years ago at 72 years old. My psa was 4.5, Gleason 6. Caught it early. I had 45 treatments over nine weeks. No pain, no tiredness, no problems no side effects then and now.
Proton radiation has been around 30 years. Doctors won't recommend it because they don't get any $$$ from Proton clinics!
Good luck and God Bless!
Those were my stats when I was first Dx'd with Prostate Ca. If I knew then what I now know I would have treated it rather than active surveillance.... Ended up Treating when it moved up to a G8 and now I'm recurrent..... LIve ( or die) and learn
I waited until I was Gleason 8 before treating as well....though there is always the possibility that they missed the G8 cores when they did the biopsy initially as the time between biopsies was not all that long..... Hindsight is often 20/20 and I, too, would do a lot of things differently had I known then what I now know.... Frankly... I can't imagine that I would not have chosen active surveillance as well had my stats been the same as yours back in THOSE days ( before I knew that the cancer can take hold even WITH psa's that low..... I was depressed with a rather low quality of life back when I was initially Dx'd and I didn't want to do ANYTHING that would make me more unfomfortable than I already was.... Now here I am 8 years later facing the same dilemna only with a much more serious situation on my hands.... treat or die.... If the cancer would kill me quick enough that I could get assisted death in short order I might be inclined to consider it but as best as I can determine the damn thing eats away at you piece by piece and you can last a LONG time..... not a good way to go..... What protocol are you on currently??
medicine.wustl.edu/news/pro...
Thank you for this reference..... it is getting SO hard to put together the truth about one Tx modality over another.... It's almost like arguing with someone over who makes the better cars... Ford or Chevy.... Doubtless someone reading THIS article could find a reference elsewhere that says that there is NO difference in side effect profile..... Ultimately one has to put some trust in the people treating him/her or you'll be stymied in choosing ANY treatment...... I am about to start ADT and I am utterly freaked out about the potential QOL issues that surround it..... THEN I read reports of people who undergo it with minimal side effects....THEN I read reports of people who can barely function under the regime..... Trying hard to believe that I will be one of the lucky ones who tolerates it well..... If I ever am back in the position of considering RT I will have to look closer at Proton beam.....thanks again.....
Bob
I had all the same fears when I started ADT. You hears stories that cover the complete gamut.
I my case I am about two months into my first 6 moth shot. I get pretty decent hot flashes, and sex is on hold till I get off this. All in all not so bad if it doesn't get any worse that this.
Hopefully we will both end up with one of the good ADT stories.
Glad your response has not been so bad....what are you taking?? Moreover thanks for the report.... I am always happy to hear stories of ADT that is not catastrophic.... I remember a couple of posts a while back where people were asking " how do I know if this is working.... I don't have any side effects"... THAT is the person _ I _ want to be : ) thanks for weighing in and heres hoping your good luck with the meds continues....
I am on the 6 month Lupron Shot. The hot flashes are a problem, but one that is dealable. I have no prob with the daytime ones, but at night it wakes me up, and if I am not careful I will wake up at 04:00 shivering because the bed is soaked.
I have been dealing with this with different sheet / room temp combinations. At this point what is happening is I wake up 3 4 times sweating like a pig. I wait till I get cold, grab a beach towel stashed by the bed and dry off, then pull the covers back on and go back to sleep. Fortunately I am one of those that can get back to sleep easily. With wicking sheets this is tolerable to me.
I have also been taking Megace for the last two weeks to deal with the flashes, So far I can detect no results from that.
My husband has been on ADT for a year now. Does the monthly. Supposedly side effects aren't as strong. But who knows. Everyone is different. Exercise helps A LOT. His hot flashes are getting worse but the mood swings and forgetfulness are not. He starts proton tomorrow.
Remember, YOU ARE THE BOSS OF YOU. Fight on Tommyj2!!
Did he initially have RP and now getting salvage radiation or is this his first go round with definitive "curative" Tx??..... I am quessing the former with a rising psa??..... thanks for the info on ADT response...
Last week I got a copy of copy of the latest Brotherhood of the Balloon newsletter. It included results of a PBT vs IMRT trial. PBT came out tops.
Hi, I had Proton Beam Therapy 10 years ago. I had no discomfort whatsoever. Never was tired. My wife and I are still intimate. Absolutely no side effects. I am now 83 years old.
It is not a "new" treatment! Their are Proton centers all over the U S. It's expensive and Insurance companies don't care about your health and well being they care about money! You have to fight for it. Good luck and God Bless
Not what you're looking for?
You may also like...
Proton Beam Therapy
Has anyone had Proton Beam Therapy for their prostate cancer. I have read up on it but would like...
Proton beam therapy please help
Hi did anybody try proton beam therapy. With Mets to lower their pas and did it help thanks sooo...
Proton Beam vs IMRT
Hello All , I just completed 3 sessions , ( fractions ) 9 grays each day , of Sbrt to the 1 lymph...
Proton beam vs. x-ray therapy
I was lucky enough to be recommended by Darryl and Malecare (thank you for that) to participate as...
Proton Therapy
Unfortunately many are not aware of the use of proton radiation therapy for eliminating the cancer....
PROTON THERAPY
judge in proton beam therapy class action lawsuit shames UHC
Proton beam for Gleason 10
Proton therapy finally starts
Should I consider Proton Therapy 
