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Posted 8/30/2007 8:31 AM (GMT -8)

I have been reading posts in this forum for several weeks now.  This is my first post.  I want to thank all those at HealingWell.com for providing this wonderful service for those in need of someone to talk to.  I belong to an elite group of PC victims classified as "high risk."  From reading this forum I know that I am not alone.

 

My journey started back in March 2005 when a routine physical turned up a PSA of 4.0. My GP was not too worried since it was still in the normal range.  I did not know until later that I was at the very top of the normal range.  I had been fighting prostate infections off and on for over 10 years and assumed that this was just another prostate inflammation.  I was put 6 weeks of antibiotics with no further PSA testing.

 

It was 2 years before my next physical.  I could give a million reasons why I missed my yearly physical.  After all, I was as healthy as a horse, had not missed a day of work in 5 years due to sickness and I kept myself in good shape with lots of exercise and eating right. But, the bottom line was that it was a stupid thing to do at my age.  For the men reading this, you are never, never too busy to have your PSA checked yearly.  For you ladies, drag your men, screaming and yelling if necessary to make sure they are tested. You may save their life.  My belated PSA test returned 11.7.

 

I was referred to an urologist who initially treated me for an infection with antibiotics.  My PSA was retested, but it fell only .4 to 11.3.  It was obvious at that point that I had bought myself a biopsy.  My urologist performed a relatively painless 12 core biopsy.  A week later my wife and I were given the results.  We never expected him to use the "C" word.  How could it possible be true?  After all, we had just returned from a week of high altitude hiking in the Colorado Rockies.  How could I possibly have cancer after taking such good care of myself? 

 

Pure terror followed in the weeks after the biopsy results.  Couldn't eat, couldn't sleep and couldn't stay focused.  The fear eventually abated as acceptance of my own mortality set in.  It was time to stop feeling sorry for myself and get to work finding a treatment.  My urologist suggested surgery and referred me to a urology center in Sarasota, FL where robotic prostectomys were performed on a daily basis.  After consulting with the surgeon, I left his office feeling that there has to be a better way.  If not a better way, then something a little easier on my plumbing.  Several more weeks of research led me to proton therapy.

 

I was fascinated by the success of the proton treatments performed at Loma Linda and the almost complete lack of side effects.  More research revealed that several (4) new proton therapy centers had opened in the U.S. and one of the newest was 5 hours away in Jacksonville, FL.  My wife and I both decided that this was the treatment we wanted to pursue and God willing, I would be accepted as a candidate.  I had a consultation at the Florida Proton Institute on 8/20/07 and at which time they gave me a physical and a CT scan.  I received notification yesterday that I was indeed a candidate. 

 

My next step will be 3 days of testing the week of 9/10/07 and then the start of treatment somewhere around the first week in October.  Nothing seems to happen fast in the PC world and the waiting can be overpowering.  My wife and I feel that God led us in our decision to go with the proton therapy even though my urologist and surgeon were appalled that I would not be going under the knife.  To say that they had even a basic understanding of proton therapy would be giving too much credit.

 

Now on to my question.  During my proton therapy consultation, the oncologist told me that because I was a "high risk" patient, she recommended chemotherapy during the proton treatments followed by 6 months of hormone therapy.  From my research, this appears to be the standard treatment protocol for high risk PC.  Has anyone been through short term hormone therapy and what can I expect in the way of side effects?  It appears that the more serious side effects come after a year of treatment.  Also, once treatment ended, how long did it take before you felt things were back to normal?  I know everyone is different, but I would like a general idea of what to expect from those that have been through it.

 

Thanks again to those that support this site and the comfort, hope and support you provide.

Posted 8/30/2007 9:51 AM (GMT -8)

Welcome Computerguy,

Congratulations on choosing Protons and wishing success in your treatment

I speak as a current Proton patient at Loma Linda. See my signature for the details. Your story is very similar to many here and your urologist and suregeon reactions to Protons are the norm it seems. I have heard literally a hundred men tell the same story as to how they discovered Proton Therapy and in only 2 or 3 instances has it been due to urologist recommendation.

To your questions, you are the first I have heard who is being recommended chemo while receiving Protons. I see your stats and because of your PSA and Gleason score their must be some issue with your treatment that would show improvement with receiving the chemo during Proton Therapy. Maybe someone else here would know more on this issue.

There is some data to show that with high PSA (>10 ng/ml) at treatment start that receiving hormones does greatly enhance the effect of the Protons and improves serum free recurrance rates by as much as 30% for the 5-10 years that are typically quoted. As to side effects from the short term HT you can expect as a worst case, fatigue, hot flashes, breast tenderness, muscle and tissue loss, bone density loss. In general it also will artificially supress your PSA resulting in no true reading of the level in your body for approximately 6 months after you cease taking them.

Some patients at Loma Linda with similar numbers to yours are treated with Protons and Photons. Some have been previously given Hormones by their uro for the purpose of shrinking the tumor prior to Proton treatment. You should be encouraged by the fact that they have accepted you as a patient as Protons are not effective at treating PCa that has escaped the capsule or has metastisized.

Please note as a disclaimer that I am receiving Protons only, have never had any other Prostate issues (other than PCa) have never received Cipro or hormones. My knowledge comes only from the dozens of conversations I have with fellow LL patients and conversations with my attending doctor. My email is active below my name and I invite you to ask any questions regarding the Protons themselves at any time. Good Luck

John


Posted 8/30/2007 11:21 AM (GMT -8)

Hi Jayadub, thanks for your response.  I have to admit that I was surprised when the oncologist recommended chemo while undergoing Proton treatments.  From reading the experiences of other high risk Proton patients, I fully expected a combination of proton and photon therapy.  The chemo seems a reasonable approach to kill any of the little beggars that might get away, but I doubt that I will feel like playing golf with the other patients after my treatments. 

I have also read the clinical studies concerning the use of adjuvant hormone therapy in high risk patients which has proven to greatly reduced the risk of recurrence.  Strangely, these same studies showed no advantage in overall survival.  I have questioned if the side effects associated with hormone therapy are worth enduring, considering there is no difference in overall survival.  Why not wait to see if there is a biological failure and then take the hormone treatment.  My wife, who has been my rock through this, looked me in the eyes and said; "Assuming you live another 12 years...if your cancer is going to reoccur, would you rather live 10 years without cancer and 2 with it or would you rather live 2 years without cancer and 10 with it?"  Point well taken!

You are in good hands at Loma Linda.  They were the first and are considered my many to be the top Proton Therapy treatment center in the country.  Hopefully, Proton Therapy will become the new "gold standard."

Posted 8/30/2007 2:21 PM (GMT -8)
Hopefully it will be the gold standard, but at this time it isn't. That standard is surgical removal, and according to my oncologist, who does not do either peronally, it is in his books that way, and that my decision is so far giving me, a pT3b guy, better odds. When I did my T-bar of certainties, surgery way out performed any radiation as a primary treatment. Keep in mind I am a high risk patient and not maybe one. This might not be as true for localized disease. But how do you know that you are localized? Here are my certainties that swung me into the operating room.

1> It is certain that post treatment surgery will clarify if this is local disease or not and its aggressiveness. Radiation only leaves you guessing until it recurs. (read about PSA bounce and the roller coaster ride that can have on you)
2> It is certain that if it is not extraprostatic, then you will less likely need to consider Taxotere, HT, and such. Right now your center is ASSUMING that chemo with RT is going to help marginally with lots of side effects.
3> There are no 15 year studies on Proton treatments and its success rates with advanced PCa patients.
4> Loma Linda, the busiest and largest proton center in the world until MD Anderson just opened theirs, boasts 350,000 treatments on their web site for cranial, lung and prostate cancer. Let's see an average of 40+ treatments per patient that's only 8200 patients for ALL cancers they have treated. Menon has done 2200 LRP's, Wilson 1700, Kawachi 1500, ***in 1200, Patel 900, just five surgeons have treated more patients for prostate disease using the daVinci robot since 2000.

In the bottom line RT does make a comeback of sorts. The long term studies as to which is better do indeed level out with a slight edge to surgery. But that is only studying if those treatments are the lone treatments. In other words if a patient has surgery, finds out the there is still some disease there, can still decide to have RT (like me). When to introduce chemo is now not as much guess work. I like the idea of having control and know I still do. At this time as a confirmed stage III cancer patient, I know that I still have that one more torpedo to fire. I would still be a stage II guy with radiation until my PSA rose then I would have skipped stage III treatment selections. I know this is what was good for me. You have to pick your selections. As one HW poster once said, you get to choose from slicing, burning, castrating or poisoning your disease. I am certain that there is a great need for emerging treatments. Proton is a proven form of radiation treatment. But it can't tote the line alone. And you knew that by expecting the possibility of more than just proton treatment. The reason for that is IMRT is shown to perform better with WPRT treatment. I had that treatment to address to lymph nodes in my pelvic region. Some places will do brachytherapy with IMRT or proton. I felt like if yu are going in with the seeds you might as well take the darn prostate out too. After all that radiation you going to have side effects. Proton only boasts a 10% drop in side effects. Most of that goes away in six months.

Gosh I am not banging this form of treatment, just stating why it was not an option for me. And a few facts you can look up at their sites.

Tony
Posted 8/30/2007 2:36 PM (GMT -8)
Back you your question. .
I am on HT and will be until January, completing 8 months. Others here have completed it and can better tell you than I about how the side effects went away or not. My understanding is that if my PSA is cooperating then come off the HT, preserving QoL, and see how durable my remission is. If it starts to fail we may try Avodart or Proscar to stop production is dihydrotestosterone. And see if that stops the recurrance. If not Ketocanzanole. If not try to combining these with Casodex and Lupron. If not then try experimental. I am hopeful that my disease will stay undetectable about this time next year off the HT. I can answer you then on if the side effects are gone.

Tony
Posted 8/30/2007 4:07 PM (GMT -8)
  Hi ~ ComputerGuy & Loved Ones,            W elcome to…                                  ~ HealingWell ~                                                                           and                                  A    “ Special ”    Warm Welcome   to   You !       KNOWLEDGE     IS     POWER   ...   and   POWER conquers   fear     v       bluebird ~   Moderator for Prostate Cancer Forum http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg   Click here for… Prostate Cancer Resources, Helpful Hints , and Topic Thread Links This link is also located at the top of the HealingWell’s Prostate Forum where topics (threads) are viewed   ;)
Posted 8/30/2007 4:15 PM (GMT -8)
Hi ~   What a “powerful” personal thread…   Thank you so much for reaching out to all of us… and in turn we will definitely be reaching back. We will be walking with you ~ as you traverse the stepping-stones in “Your Journey”.   http://i206.photobucket.com/albums/bb179/mamabluebird1955/Stepping-StonestoHealingWell.jpg     This thread will definitely be viewed by many ~ so please consider staying on this thread for all of your postings that pertain to your personal journey…. like Biker (Jim & MaryLu), Jetguy (Bill & Jan), JustJulie (Julie), Izzyblizzy (Tanya & Ken), and many others have done.   It helps to keep the information together.    Buddy & I invite you to visit “Our Journey” listed in our signature below… It will let you learn a little about us!!!   We welcome you and we send special HUGS to you and your wife. In New Friendship ~ Lee & Buddy  
Posted 8/30/2007 4:17 PM (GMT -8)

 Has anyone been through short term hormone therapy and what can I expect in the way of side effects? "

Not everyone has serious side effects from hormone treatment: Two men I know who currently use it have found it very effective with few side issues. One is 61, the other 89. In both instances their PSA reduced dramatically to below 1.

Suggested ways to reduce side effects are to keep as active as possible, maintain a good diet, change the type of medication if there are side effects.  Prior light radiation to chest can reduce potential for  breast enlargement.

It's worth reading the books by Dr Charles Myers and Dr Lee Nelson. Both authors used radiation and hormone treatment for their high risk PC.

Posted 8/30/2007 7:25 PM (GMT -8)
I have that book with highlighted sections in it. I am on protocol with the Myers analysis. And I am doing well with the HT. My side effects are very manageable. I have a cool room. It's cool because my guitars are in it and it's 70 degrees. And that's quite a drop for living in Vegas. Few minutes and a few tunes and back to working or workouts. I know I am coming off them and will be done before there is any real damage done. And like you said, aus, it may never happen. But I do take the fosamax, the vitamin D, the calcium so that I don't wear out my bones by the time I get to 61 and 89. I've got a ways to go and I don't think continuous treatment will help me much. I have to go on intermittant and try to prevent the long term stuff.

Tony
Posted 8/30/2007 8:57 PM (GMT -8)

On May 17, 2007 after a rising PSA and prostate biopsy I met with my oncologest.  Adenocarcinoma involves 80%, 90%, 25%, 20%, and 10% also had perineural invasion by adenocarcinoma.  PSA 6.81, Gleason on right lobe 4+4=8, left 3+3=6. My Doctor immediatly put me on hormone therapy, (androgen deprivation)  This at least gave me some breathing room to investigate my options.  I am now in my third week of treatment at Loma Linda University Medical Center.  What a great program.  Long term studies that show cure rates better then X-ray radiation, and surgery; and the incidents of the usual side effects of incontinence and impotence in the single digits, all with no blood and no pain.  Proton beam is a no brainer.

In answer to your question there are now several long term studies in the US, Sweden and Australia that six months of testosterone suppression, two months prior to radiation (proton or X-ray) during the two month radiation regiment, and two months after radiation significantly increases survival, (up to 50 %) especially in men with agressive cancer like yours.  Any way go with the advise of the Doctors at Loma Linda, they have been doing this for longer then anybody in the US.  It realy is a great program.

Posted 8/31/2007 5:01 AM (GMT -8)

Thanks to everyone for your responses.  It is helpful to hear the HT side effects from real people and not just go by the published data.  Maybe 6 months of HT won’t be as bad as I feared.  Judge, I will actually be treated at a new Proton treatment facility in Jacksonville, FL.  This facility is part of the University of Florida and is affiliated with the Shands Cancer Center.  I believe I read that their technical staff was all trained at Loma Linda.  As you stated, there has been a significant increase in progression free probabilities due largely to the dose escalation (80 Gy) now being used.  This is especially true in high risk patients.

 

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