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IMRT delivery options for G9

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Posted 2/23/2017 2:31 AM (GMT 0)
Hi,

I posted here 2 days after my husband's diagnosis (while in a world of hurt) and found so much help here. Now that we've done some more research and work, I am back smile

My question this time is with regard to IMRT...we've found a great doc, but he's farther away than is ideal. We're trying to weigh our nearby options and I'd love to hear ideas from some of you who used a several week long radiation course as part of your journey. Advance apologies for the lengthiness of the background in this message ;)

We met with Dr. Chris King at UCLA today to discuss radiation options for my husband's Gleason 9 prostate cancer. We've decided my husband is really not a surgical candidate at this point, as he would almost certainly require radiation as a follow up treatment as well.

After meeting with Dr. King, we're pretty comfortable that our best shot at a cure is the Triple Threat (HT, 5 weeks of IMRT at 5 days/week and a brachytherapy boost). We are meeting in 2 weeks with Dr. Demanes at UCLA to discuss the brachytherapy and hopefully put it on the calendar.

One outstanding thing we hadn't expected today is a PET scan Dr. King ordered. We thought the bone scan was thorough enough (and had expected a first shot of Lupron today), but Dr. King wants to have this scan to be certain there's no bone involvement prior to beginning the HT.

We live in South Orange County (southernmost tip of the greater LA traffic nightmare), so while the drive to UCLA (70 miles) for the brachytherapy treatment is really no problem...to drive up there 5 days per week for 5 weeks would be possible but onerous (it can easily be a 3 hour journey at the wrong time of day). After meeting with King, my husband felt so comfortable with him doing the IMRT that he is plotting how to get up at 4 am for 5 weeks in order to be the first appointment of the day and then drive back down to OC for work.

So...for those of you who have been through IMRT...is that a reasonable thing to expect to have energy for? I'd love to say I can drive him, but we still have 3 children at home with us (youngest 11) and we can't really both disappear for the entire day. Also, we have UCIrvine and Hoag hospitals nearby...is it reasonable to expect that he could have the IMRT done locally? Would there really be a loss of competence in the practitioner?

Thank you in advance for any insight you can offer!
Posted 2/23/2017 3:07 AM (GMT 0)
I'm glad you had a successful meeting. I get the same feeling of confidence whenever I meet with him or talk to him, which is fairly often. I think you will like Jeff Demanes as well.

While I think that Dr King can do an excellent job with the IMRT part of the therapy, I think others can as well. I think it would be very difficult to drive that far every day. There may be some fatigue towards the end of the treatment (he ought to exercise a lot!), but the bigger issue is the frequency and urgency he will start to feel.
Posted 2/23/2017 3:22 AM (GMT 0)
TA-any chance you know any RO's you can recommend down here at Hoag or UCI? We have one referral from the original urologist who gave us the dx (but honestly that guy has been such a creep through this whole process, I don't trust him at all. haha)
Posted 2/23/2017 3:58 AM (GMT 0)
I'm sorry I don't know any ROs in OC. As to what to look for... Of course, experience with this kind of therapy is useful. I like VMAT or Tomotherapy. If VMAT, they will all use either fiducials or Calypso (RF transponders). Will the pelvic lymph nodes be treated?

The PET scan can help you rule out futility of treatment. Which PET is he recommending? I think UCLA offers the C-11-Acetate PET for $2300. They have Ga-68-PSMA PET CT for $2650, but last I checked, they were only allowing it for patients who have recurrent PC. The Axumin/fluciclovine scan (available at Cedars Sinai) is only for recurrent patients.
Posted 2/23/2017 4:10 AM (GMT 0)
He called it a sodium fluoride PET scan. He gave us an order to take locally, but if we have trouble getting it done here he will go back to UCLA for it. Dr King said to expect insurance to cover it.

He didn't actually say anything specific about the pelvic nodes. I suppose I should've asked him that. We did not feel rushed in the appointment and I asked a bunch of questions, but I managed to leave that one out.
Posted 2/23/2017 4:33 AM (GMT 0)
I did the daily drive to UCLA from Redondo Beach and it was manageable--but I couldn't imagine doing it much further away than that. They requested a full bladder and drink 24 oz of liquid 30 mins before and my memories of chugging Gatorade on the 405 weren't exactly the highlight of my treatment.

I think the key to IMRT is having latest technology equipment and...an insightful enough RO that can make sure that the programming is appropriate for the diagnosis. I'd have to think that can be managed separately from UCLA's brachy, but that there needs to be careful coordination. Good luck with the additional scan!
Posted 2/23/2017 5:00 AM (GMT 0)
Yes NaF18 is available pretty much anywhere, and is usually covered by insurance (get pre-approval!). It shows bone mets.

With a Gleason 9 and a PSA of 6, the risk of LN involvement is about 34%, and they would typically treat the pelvic LNs with anything over 15%. You can email him that question.
Posted 2/23/2017 5:11 AM (GMT 0)
ok, thank you. I just looked at the website for the radiation oncology department at Hoag hospital down here in OC. They have a fancy website (not that that means anything of course), and TomoTherapy and VMAT are both listed as advanced equipment and resources (Tomotherapy is specifically mentioned for use with IMRT...at first glance I don't see VMAT listed in conjunction with IMRT but I'm not claiming to have been thorough yet). They offer the HDR brachy there too (but I think we want to go to UCLA for that...).

https://www.hoag.org/specialties-services/cancer/treatments-services/radiation-oncology/state-of-the-art-equipment/
Posted 2/23/2017 12:54 PM (GMT 0)
To echo Tall Allen's last comment, my lymph nodes were irradiated to 50.4 Gy due to a very similar likelihood of involvement (as G9, PSA 5.2). It went well for me, no side effects from that.

My radiation therapy was IGRT by IMRT, performed with a Varian Trilogy with RapidArc. A smooth and fast delivery system, millimeter accuracy, aligned to my 3 fiducial marker implants. There are various methods for EBRT, but this worked well for me with few side effects.

I had about a 45 minute ride from work to the hospital, and the same back again. Going to the appointments wasn't a problem, but driving back to work would have been tiresome. My wife was able to drive me both ways, and I usually napped in the car on the way back to work. People do drive themselves, but after the first couple of weeks I felt noticeable fatigue after each treatment. I could feel it about as soon as I sat up after each one. Just felt "off" somehow.

Three hours fighting LA traffic after a treatment would likely be a significant challenge.
Posted 2/23/2017 1:18 PM (GMT 0)
I successfully used the "triple Play" for high risk PCa. I was greatly influenced to use HDR brachytherapy by the information I received from Dr. Demanes and am glad I went that route. See www.cetmc.com.

For the IMRT, I tried to get either the first appointment or last appointment of the day. I ended up getting the 7:00 pm spot. My reasoning was that I was working and I would get the IMRT either on the way to work in the morning or on the way home in the evening. I got the last slot and it worked well. It allowed me to go to the gym on the way to work, then work a full day. and get the radiation on the way home. This kept me out of most of the rush hour traffic each way (Atlanta is brutal), and maintained my work and work-out schedule. It did make for a bit longer day, but was no problem.

As for radiation fatigue, I experienced none. I had full radiation of the prostate area and pelvic lymph nodes, was on ADT and had two HDR procedures all in the course of about seven weeks (and a colonoscopy). I think I avoided the radiation fatigue by improving my diet and increasing my exercise. I cut out caffeine, carbonated and acidic drinks, decreased red meat, decreased white carbs (bread, pasta, etc), and increased fruits, vegetables, and seafood. I replaced coffee with green tea and all other drinks with a of water. This kept me very hydrated and meant I was using the bathroom very often which helped alleviate any urinary distress. Importantly, I maintained my regular evening glass of red wine.

In all, the IMRT was more of an annoyance than anything. There was never any distress, side effects were minimal and disappeared within 10 days of the last fraction, and everything went well. I met many wonderful people in the waiting room and shared many experiences of cancer treatment. By comparison I was very glad to only have high risk PCa. Many others were in real trouble and not all are with us today.

IMRT is very minimal in its physical imposition for most men with PCa. Thankfully, it is very precise, effective and presents very minimal side effects most of which reverse quickly. You will do very well and it will fly by quickly.
Posted 2/24/2017 2:10 AM (GMT 0)
Fatigue does set in about a third to half way through IMRT. Also ADT is usually a prerequisite for Gleason 9 prior to during and after IMRT for up to 18 months. That adds to the fatigue. I see no way that a long commute is workable. In addition lymph nodes are highly likely to be involved now or in future with Gleason 9 so IMRT now could be very helpful.
Imho the thing to look for is latest equipment, great RO and staff particularly dosimetrist with much experience with PCa patients. Finally the patient must follow instructions carefully regarding having full bladder and avoiding gassy foods.
Bob
Posted 2/24/2017 2:55 AM (GMT 0)
I had a 70 mile one way trip down to Sarasota. I was also on ADT at the time

I was able to time the commute off hours, as I started work later in the day, otherwise it would have been impossible. So if you are able to time it for the lowest traffic density, it's doable

6 weeks for me. I decided I would put up with the inconvenience of the arduous commute to be treated by the most experienced RO I could find in my area. You really only get one shot to get this right.

Once I figured how to urinate while driving, without having to stop, it was easy.
Posted 2/24/2017 3:39 PM (GMT 0)
BTW, if you haven't touched base with HW poster CaliJR, he had his IMRT done locally (Ventura county) in conjunction with his HDR brachy at UCLA. I'm sure he could share his insights.
Posted 2/24/2017 4:09 PM (GMT 0)
Thank you all.
We have a facility nearby (Hoag) with all the latest equipment...it seems to me that we need to do our due diligence and meet with the RO's there.
We read CaliJR's blog but I don't think my husband has personally contacted him yet - we'll do that for sure. I really think it makes more sense for him to do the IMRT locally...not only will it be way less taxing for him, he'd have more time to otherwise take care of himself (rest/exercise/etc).
If anyone on here sees this and knows of an RO in Orange County (particularly at UCI or Hoag), give us a shout!
Posted 2/24/2017 9:02 PM (GMT 0)
JNF, Your post was very encouraging for people who are getting ready to start IMRT like myself. I start 43 days on Monday morning. Like so many others I waited and made all my appointments for the same time 7:15 am each day and then come to work. I truly hope I do as well as you did.. Thanks again for sharing it HELPS!!!..

Jay
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