JHP

I just wanted to share what I learned. https://www.rwjbh.org/blog/2019/june/choosing-the-right-radiation-therapy/ https://www.cyberknifemiami.com/cyberknife-vs-proton-vs-hifu/ https://www.summitcancercenters.com/cyberknife-vs-gamma-knife/ https://polymedex.org/en/blog/edge-varian---sovremennoe-lechenie-v-onkologii https://www.oncologysystems.com/resources/linear-accelerator-guides/varian-high-energy-linear-accelerators-comparison-chart https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7445956/ External beam radiation therapy (EBRT). For this type, a machine sends the rays of energy to the tumor. This treatment is usually done every weekday over several weeks. Includes: SRS SBRT Conformal radiation therapy Image-guided radiation therapy (IGRT) Intensity-modulated radiation therapy (IMRT) Photodynamic therapy (PDT) Proton therapy Total body irradiation (TBI) Total skin electron beam therapy (TSEBT) Internal radiation (brachytherapy). This is also called interstitial therapy. Small seeds of radiation are put inside or near the tumor. EBRT Stereotactic radiosurgery (SRS) Gammaknife is the oldest, and radiation can only be delivered from limited angles to a head that is screwed into a contraption. It does not offer continous tracking. Minimally invasive. Stereotactic Body Radiation Therapy (SBRT)/(SRS) (following bolded are machine brands) Cyberknife is newer and can reach 360 angles. It does offer continuous tracking. Truebeam is like Cyberknife, but newer, and offers higher radiation doses in a shorter amount of time. Varian Edge description "distinguishes EDGE from the cyber-knife system, where only two perpendicular x-rays are used, which increases the risks of inaccurate placement of the patient and can lead to the need for an increase in dose and entails risks of damage to healthy tissues. The innovative Calypso system is used in the treatment of hard-to-reach tumors of the uterus, lungs, prostate, pancreas, and liver. Calypso monitors the mobility of the target (tumor) during the irradiation using implanted markers or beacons, to accurately determine the location of the tumor and tracking its movements during the procedure. This allows you to treat tumors of complex localizations, protecting healthy tissues as much as possible. Varian Edge® is a unique system that allows real-time tracking of a target (tumor) in 6 directions in 2-, 3-, 4D modes and monitoring the patient's respiratory movements using SRS stereotactic surgery or stereotactic extracranial radiation therapy SBRT." Varian LINAC series from oldest to newest Trilogy 2005 > Truebeam 2010 > Edge 2013 Trilogy and Truebeam can deliver 3D, IMRT, RapidArc, SRS/SBRT Edge delivers 3D, IMRT, SRS/SBRT ----------------------------------------------------------------------------------------------------------- Questions: Varian Edge sounds REALLY like radiodynamic therapy...is it the same thing but branded? But the NCI facility said it was the first time this has been brought to the US. I read that they said it was only ever previously used abroad. Some of these faster options deliver higher doses but supposedly 30-40% of radiation exits through the target. If laying down for a long time isn't an issue, would the lower dose Cyberknife be better? But some of them offer clearer imaging and more accuracy... In hindsight...that first local hospital choice sounds like they were saying we have Windows, Word, Powerpoint, and Excel. That list is basically two machines.

He doesn't have a dedicated oncologist in any sense since he is at the out of state facility right now. Insurance is only covering orthopedic care. The hospital will discharge him back to the home state for oncology care. I suspect this is why they did a biopsy on his bone mets and not a lung biopsy. Some good news, I was able to get Option 3 by asking, and they have an even sooner appointment, so there is no tradeoff there. The hospital apparently hadn't even checked to see if they were available, they just recommend Option 2 out of habit. Option 3 has everything Option 2 has + proton therapy. But Option 2 mentions they started rolling out ----- therapy last year which claims to be better than standard radiotherapy, started Phase I trials and they are the only one with that particular machine, BUT the types of cancer they've treated aren't lung in particular so like proton therapy which is location dependent, it's not guaranteed that this technology will be relevant for this situation...

I have been trying to get a hold of an oncologist to ask for an opinion for four days already, so while I'm still waiting, any advice is greatly appreciated. Dad's biopsy on the bone metastases came out and it is not SCLC, but rather NSCLC. Just to recap, there were lesions on the brain, neck, leg, kidney, and pancreas. And a fracture from the bone mets that they said could possibly heal on its own without surgery as long as it was radiated. No one knows if they are all metastasized NSCLC but the bone metastases definitely are. Of course, finding out that NSCLC can transform into SCLC through targeted therapy was frightening. The internal medicine doctor said he would defer specific questions but his opinion was Option 2 is better but it was our choice to go with the sooner or later available places. I was advised that we could not start radiation and switch to another place because mapping would only be paid by the insurance once. We have to choose between starting radiation at one of these two places: 1) local hospital Pros: can see him right away for radiation this week Cons: was the hospital that originally transferred him because they didn't have specialists, not ranked in lung cancer in US News and World Reports, not NCI facility, pretty much no doctors are around after 3PM, current doctor described it as "not having as many resources" What they offer: Varian TrueBream® linear accelerator (LINAC) Varian Trilogy® 3D guided stereotactic body radiation therapy (SBRT) or stereotactic radiosurgery (SRS) when targeting tumors in the brain Image-Guided Radiation Therapy (IGRT) Intensity-Modulated Radiation Therapy RapidArc® Radiation Therapy 2) cancer center Pros: NCI facility, more resources, current hospital's recommendation Cons: 3 week wait time minimum before treatment can begin, What they offer: intensity-modulated radiation therapy (IMRT). stereotactic radiosurgery (SRS) stereotactic body radiation therapy (SbRT) high-dose-rate (HDR) and low-dose-rate (LDR) brachytherapy CyberKnife and GammaKnife radiosurgery hyperthermia high-intensity focused ultrasound (HIFU) hypofractionated IMRT and brachytherapy 3) top ten hospital, should I try to get this place? Pros: NCI + nationally ranked top 10 cancer hospital, has proton therapy in addition to everything above Cons: seems reluctant to accept transfers, doctor did not include this in the two options they presented but this place does accept our insurance, possibly very long wait times I don't know if radiation mapping is just one spot at a time or all of it at once, because for his lung and brain mets, it seems like Cyberknife would be a superior option.

They have informed us that after discussion, the neck bone fracture doesn't necessitate surgery at this time (after telling him to not eat and be ready for several days). That's good news. They're going to radiate his leg at the end of this week, then his neck later. So it will be a bit over two weeks before any type of treatment happens. The leg bone biopsy is pending. No discussion of lung biopsy scheduling at all. I'm going to contact the hospital and ask about it if nothing happens soon. He's really reluctant for me to speak to anyone there, says that the nurses don't know anything, the residents just take their orders from the higher ups so they don't know either, and nothing is certain yet since the leg biopsy result hasn't come out. He says they probably just want to deal with his bone issues first so he can leave the hospital and come to treatments without taking up a bed. I've had two clear-minded days now. I'm so thankful there are people to talk to about this. The professionals seem to be moving like molasses, while I'm the only one in emergency mode.

Hi Tom, I read through the info. It says that waiting for the biomarker tests to come out before proceeding with treatment would be a good idea. From other sources, it seems that SCLC doesn't really have many biomarkers to work with compared to NSCLC, but it does initally respond very well and there is rapid improvement with conventional chemo. The danger is recurrence. Is there a consensus on what order of treatments show improved long-term rates? I read a paper saying that radiation and immunotherapy showed improved rates which they hypothesized was because there were small bits of dead cancer material (same as the cancer vaccine theory). I think someone here posted The Median Isn't the Message by Stephen J Gould who said the right tail of these graphs could extend very long. Would you happen to know where I could locate it for lung? Also, have you heard about the Mt. Sinai personalized cancer vaccine clinical trials? They're in Phase 1 and they mentioned lung as one of the cancers they treated. It sounds like they only offered it to people with a chance of recurrence. Besides this particular one, there seem to be other experimental therapies holding tiny trials. What happens when you are not in the state/hospital of these places holding the trials?

They haven't done any lung biopsies, but they already did all the imaging possible and took one from his leg bone. The result has not come out yet, but they can see from all the imaging the mass that took over the neck bone and caused the fracture. Right now, all they're doing is orthopedic surgery to stabilize his neck and there's been no word about any lung biopsy or treatment from anyone. I looked at the rates as I'm sure everyone has and sometimes I feel like every second is being wasted. It's been two months since he started having neck pain and a week since he got the diagnosis. I don't know if their plan is to wait until he recovers from that bone surgery to do a lung biopsy or not which would be an additional 2-3 weeks. I'm also hoping for a miracle. Almost every week it seems like some new breakthrough is coming out. Just before his diagnosis I read about Mt. Sinai's. I worry intensely about his access to whatever cutting edge science exists. I've thrown every free moment into reading science papers. Still, I tell myself I can only do my best each and every day. All the best to you and your father as well.

Thank you Tom, I will read more about all the resources you posted. Thank you for responding. I have read over a lot of your past replies and everyone else's this past week, and I hope that my dad can also beat the odds.

Does anyone have any experience with bone metastes? Will doing bone surgery first and then radiation later cause cells to migrate? Also, I really don't know how to read the US News hospital rankings. The one he is at currently has is well-rated in equipment for radiation and such. But they are unranked in lung cancer. Will moving to a ranked hospital give him a better chance?

I think you may have seen me post shortly before you yesterday. I am in the same boat. All scans done except biopsy and it has also spread to spine and other places. They said it's eaten away at half of his neck bone so they're doing surgery to stabilize it first and then radiation. Worst of all, his English is limited and so I only get half the picture at any time and it took about five days before I was able to speak to anyone treating him by phone. I have read more scientific papers than I have ever read in my life. I'm still hoping it's not SCLC since the biopsy hasn't been done yet, but it definitely is cancer. I feel sorry that I didn't choose a high paying career so he could enjoy material comforts. I regret the time lost when I argued with him. I'm terrified and very, very sorry. This wasn't what I imagined at all. I am so sorry that we are in this situation. Everyday I say, grant me the serenity and strength to face the things I cannot change. I tell myself birth, aging, sickness, and death are all part of the human condition that no one can escape. I tell myself that some people don't get this extra time. Maybe life will be lived months at a time now, but a lot of life can be lived in those months. All I can do is my best for him now. There is plenty of time to be sad later. Of course, even as I'm writing this I'm still bawling but I have to be strong for him.

Hello, I'm JH, adult child of a patient. I still can't really believe that this is happening. My dad (60s) had been in fine health before these two months. The only problem he had was HBP which he took medication for, an occasional dry cough that came and went, and peripheral neuropathy in a particular leg for over a decade (was scanned before but they couldn't find the issue). He smoked for about fifteen years then quit for about the last fifteen. No breathing problems whatsoever, not even right now. He likes to nod off while watching tv, so we thought he had just injured his neck somehow about 2 months ago. He could walk but because he couldn't turn his neck, we got him a cane for support. The neck didn't get better, and I urged him to go see a doctor a week into this, but he didn't want to. His afflicted leg got worse - he couldn't put weight on it - and his neck didn't get better. He actually had a yearly checkup about three weeks ago where he did bloodwork. They assured him he was fine, except his blood sugar was slightly high and should be controlled through diet. It wasn't until he started needing to take pain meds for his neck and leg at night that he went to the hospital where we got the news that according to their experience, this is SCLC extensive or rarely it could be tuberculosis + other things. They found lesions on his kidney, pancreas, brain, spleen, leg, and neck. His neck problem turned out to be a fracture from a mass growing there. They said where his leg met the pelvis was brittle maybe as a result of the lesion or not. He did have low iron for a while in the past and didn't keep to the supplements. According to what I understand, they've done all the scans CT, PET, MRI, but they just haven't done a biopsy. It's been a week now, and he was just transferred to a different hospital out of state since they needed a specialist for his neck. I've been spending every waking moment besides work trying to research. I have so many questions, but I don't know where to ask. I'm still very shocked after looking at the 3% rate to say the least. I thought I would finish up my education, get a better job, buy him a car, and generally do good by them and he would have many, many years to enjoy this. I feel so sorry that I didn't pick the highest paying career, that I wasn't able to provide materially for him in the way that other better children of immigrants might have. I'm sorry I ever fought with him.