Hi everyone,
I’m hoping someone could offer some insight or even their own thoughts into my dad’s latest dilemma as I think it’s possibly a rare situation. You all have been so helpful in previous posts, thank you so much! I couldn’t do this alongside my dad without this forum. I can’t find much info on my question in my research. My dad is 64, stage IV NSCLC adeno, low volume tumors, dx 2/28/18, started clinical trial of Carbo/alimta/Pirfenidone pills 3/30/18 for 4 cycles, 2 Alimta maintenance so far and 3rd next Friday with scans. He has 4 areas of cancer right now. One tumor in his right lung pressing some on the bronchus, right atrium of the heart causing mild SVC syndrome. Recently developed a 5” blood clot outside the heart and is on lovenox and it is working fairly well so far for the clot. He has a very small portion of his right 4th rib showing cancer on PET scan but it’s minor and small tumor in each adrenal. Chemo has not shrunk his cancer but HAS kept him stable since day 1 so far
My dad’s oncologist isn’t big on radiation or sees a need in it. At my encouragement, I had dad see a radiation oncologist independent of Moffitt, locally here. This radiation oncologist is fantastic and my dad has come to trust him. The radiation oncologist has reached out to his oncologist to discuss my dad’s case but his oncologist will not return his call, stating he does not need to talk to the radiation oncologist. This is leaving my dad to make the decision himself. So here’s the dilemma -
The radiation oncologist has said he doesn’t feel my dad absolutely needs radiation right now for he SVC syndrome, however if he does radiation he would like to radiate ALL tumor sites on my dad. This would be IMRT to the one tumor in his lung between heart and bronchus, and SBRT to the small area right 4th rib, and SBRT to both small adrenal tumors. I realize this is rare (at least I can’t find much on it) to have a radiation oncologist willing to hit all known tumor sites for stage IV. He did say it’s a gamble, one that could work in my dad’s favor or not. There’s also the risk of radiation side effects which he believes esophagitis and possible scarring is the most extreme possibilities. This would take my dad out of the clinical trial - essentially he would stay on Alimta maintenance but have to stop the Pirfenidone pills, which we don’t know if that’s helping as his cancer is just holding stable and Alimta is good for doing that anyways. It would also eliminate any future biopsy sites for mutation tests in future as his left adrenal is the target lesion. We are getting no help from his oncologist except to say radiation will not extend anyone’s life. I disagree with that as I have seen it many times on here where radiation has helped stage IV. My dad is torn and I’m trying to help give him enough information so he can decide what he should do. Stay on chemo and stable or stay on chemo and radiate all 4 tumor sites and gamble that it just may work in his favor for NED in the long run and come off Pirfenidone in clinical trial. Any help would be most appreciated!!!
Severe cough after chemo
Radiation to the chest (the mediastinal region)?
Stage IV Lung Cancer Diagnosed/ Life Expectancy 
Been wanting to write this for awhile
I am not a doctor and this is NOT medical advice. But if this was my decision, I would avoid the radiation at this point. His oncologist is most likely correct about the benefit vs risk not being worth considering. While radiation CAN have minimal side effects, depending on where and how it is administered, the description you gave about tumor locations leads me to think that your father will end up quite ill as a result of this. I've had radiation once, specifically for a metastasis pressing against my sciatic nerve. It was super painful. It had to be treated. Radiation was the only way to do it and it worked really well, but I did get sick and I lost about 25 - 30 pounds (and I was not overweight, so this was a big problem from which I am still trying to recover six months later, but many factors play into that).
Here is something to mull over: the effect of radiation will not change if it happens now or in six months, as long as the tumors are holding steady in the clinical trial. But it is a FACT that you do not know whether other metastasis are likely to form, and radiation will do NOTHING to prevent that. You cannot be cured of Stage IV disease by radiation, and being NED at this point is misleading. In fact, in MY OPINION, you want to keep the primary tumor intact so that you actually have something to monitor via CT scans. This shows the baseline of your progress. Without it, you have no idea whether anything is working.
My feeling is that clinical trials are worthwhile staying in for multiple reasons and sometimes they even get the patient better, more personal care. That is, of course, if they work and are not causing more harm. I'm in one now and, frankly, I had to consider pulling out due to side effects, but I am glad I am in it and I am going to tough it out as long as possible.
If your dad has good insurance and wants to stay on just Alimta, that could work for a while. I was on it for 40 rounds. But it will eventually stop working, just like other chemo drugs -- the longest I have heard of a patient being on it is seven years, but that was just one patient. I had expected perhaps 80 rounds, but only got half way there. The thing is, whether it is 20 rounds or 100 rounds, as long as it is keeping things stable, it is stretching the amount of time before the next treatment has to be considered. New targeted drugs and better immunotherapies are coming out with some frequency, but the longer you have to wait for them, the more options there will be. Radiating everything pretty much eliminates that choice, because you would not be able to effectively biopsy anything to find the best genetic matches for a new drug.
Let me repeat that: you would not be able to effectively biopsy anything to find the best genetic matches for a new drug.
I am on my clinical trial now because of a mutation that was not treatable when I was diagnosed. Now it is. Two drugs that are often effective targeting it did not work for me at all, but this trial has knocked the primary tumor down to a tiny fraction of its original size and eliminated most of the metastasis, and it did so in 8 weeks. But I had to get a fresh biopsy to be approved for this drug, and that required an active tumor.
Again, I am not a doctor. I have no medical training. But I have been a Stage IV adenocarcinoma patient since 2014 and I have been through, now, 4 different chemical treatments and that one tangential bit of radiation. If you think my experiences might be useful for your father, you can check out my blog at justbadforyou.com/blog and see why and how I formed a lot of my opinions.
Regardless if his ultimate decisions, I hope you keep us informed here on his progress. Wish him well. These are hard choices and we always hope for the best.
Thank you so much for taking the time to respond and help!!! Everything you wrote is exactly my concerns. The one thing is because of the SVC he will more than likely have radiation guaranteed to at least that tumor. It’s just a matter of when as right now it’s stable and not an immediate threat to collapsing his heart ventricle but at some point I believe that one will be unavoidable for radiation. If radiation took care of the 4 areas and my dad did well then the best possible outcome is his cancer doesn’t show up anywhere else and his tumors are dead and/or gone. I am definitely going to spend time reading your blog and pass on all info to my dad, so I cannot thank you enough for your help and advice! It will help him make an informed decision! All my best to you!
I had radiation twice it is the one that zaps you right on the spot I had 10 treatments then it came back so I got5 more but obdivo saved my life
How many treatments of Opdivo did you take?
Did you have any intentional difficulties?