Deb W Posted September 13, 2021 Share Posted September 13, 2021 Hi everyone, I am beginning to understand that remission, full remission, stable disease - mean different things. It seems that if you have spots that are cancerous but have not changed or grown it is considered a partial remission? I haven't had treatment since the end of April with Tabrecta - it was stopped after 10 days due to an allergic reaction. I've had 2 follow up CT scans - but they were without contrast so I think not much was seen. I was symptomatic not knowing if it was still the allergic response to targeted therapy or something else so my oncologist ordered a PET scan last Thursday. It turns out that there are 3 very small cancerous spots right down the middle of the mediastinum that can now be radiated - which is good news because previously I was not a candidate for radiation. I was still in somewhat of a shock as I thought that I was going to hear - we'll watch it and come back in 3 months. The watching is over and I begin radiation today with the hope to eradicate the cancer. I'm feeling really confused about the meanings of the terms used to describe the status of cancer. I just want to know if this is another recurrence or just cells that were always there but without any activity. Just when I thought I understood, I realize I still don't know so much about this awful disease. If someone would be willing to comment on radiation and how it went I'd really appreciate it. Link to comment Share on other sites More sharing options...
Tom Galli Posted September 13, 2021 Share Posted September 13, 2021 Deb, I'll comment on precision radiation. It saved my life! You should have perhaps several short sessions of SBRT or similar precision radiation, then your little spots will be toast! Literally, fried. My treatment analogy is the extreme heat and bright light that occurs when a welder puts the lead on steel. Here is some information on remission and other treatment outcomes. The outcome I'm expecting from your precision radiation is no evidence of disease! NED! Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 13, 2021 Share Posted September 13, 2021 Hi Deb- If I had to take a stab at this, with a Stage IV diagnosis, there’s a school of thought pertaining to micro-metastasis which means the cells are always there but undetected by imaging. As crazy as it seems, the watch and wait protocol is pretty common with some of my LC group members. Some people have small spots of cancer that don’t do anything. If something lights up on a PET then they receive a short course of radiation. You can expect some fatigue and maybe a little nausea so ask for some anti- nausea meds just in case. I would say that given how long you’ve been without treatment, this is a pretty solid plan with the expectation of No Evidence of Disease. I asked my doctor about the different terms once before and I still don’t get it. Link to comment Share on other sites More sharing options...
Judy M2 Posted September 13, 2021 Share Posted September 13, 2021 At Stage IIIB, I am NED. Since April, my PET scan reports have said "no evidence for recurrent malignancy", and all scanned areas appear normal. I don't consider myself cured but I do think that chemo and radiation (prior to targeted therapy) killed the cancer cells that were present. Radiation is very effective, just be prepared for the side effects which will hopefully be temporary. Link to comment Share on other sites More sharing options...
LexieCat Posted September 13, 2021 Share Posted September 13, 2021 Hey, Deb, I think the fact that they can radiate those remaining li'l suckers is encouraging! I can't provide any insight on the radiation experience or effects--my tumor is located in an area not that amenable to radiation (i.e., it COULD be done but likely to do a lot of damage to my esophagus). Hopefully you will find it to be easily tolerated. Link to comment Share on other sites More sharing options...
TJM Posted September 14, 2021 Share Posted September 14, 2021 My two cents Precision radiation is a great treatment plan. Adjunctive radiation is something I would consider a bunch before I recommend it. It was the radiation that messed me up much more than Chemo. The impact on the ephocapus is not trivial. In your case however....I think precision radiation is a great option. Peace Tom Link to comment Share on other sites More sharing options...
Deb W Posted September 14, 2021 Author Share Posted September 14, 2021 Thanks for your comments and insight - so helpful and this is the only people I know of that can provide this kind of understanding and support - so thankful for this group. Well, that was quite an appointment. I didn't hear anyone use the term SBRT or precision radiation, but it had to be because my body was marked up and precise measurements were taken - that scan felt like it was taking forever. I will start 9/22. It's so hard to determine why I have experienced so much inflammation and pain (there's been a significant improvement since it started in June) - my oncologist says it was from Keytruda (last infusion of was 12/20; Tabrecta was 4/21 (severe allergic reaction) or the Entyvio infusion in 6/21 (for the colitis that was caused by the Keytruda but terrible side effects) it all started after the Entyvio. There is no literature on this and my onc said he's never seen a reaction like I had (he didn't prescribe the entyvio that was from the gastroenterologist)---and he's been practicing for over 40 years. If you're offered Entyvio for colitis - understand that it's not the harmless infusion they present - at least it wasn't for me. I am being tapered off of prednisone - down to 8mg per day. They are lowering it by 1 mg. per month. Thank you for the info on radiation. He said it's going to be a heavy dose given 5 days a week for 3 weeks and I think he said it's 3 minutes each time. Those terms for remission - now I realize it's confusing to most of us! This is the 3rd hospital system I've been treated at. I was so impressed with the level of education and materials provided on what to expect. They made sure I had all the numbers and set me up with a nutritionist. That never happened at the other two facilities where I found the care to be fragmented. I feel like I'm in good hands. And so, like all of us, I carry on. Deb Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 14, 2021 Share Posted September 14, 2021 Finally, the third time is the charm. The more I learn about Keytruda toxicity, I think about how fortunate you were to have pulled through. It’s because you’ve never settled and kept pushing forward. Keep going! Link to comment Share on other sites More sharing options...
LouT Posted September 15, 2021 Share Posted September 15, 2021 Deb, I like what Michelle said about you "pushing forward". Keep doing so! You've got some great insight from folks that have had the treatment and my prayer is that it does for you what it's done for them. Lou Link to comment Share on other sites More sharing options...
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