Judy M.

Suzanne Sry I didn't see this post sooner. For some reason I don't always get notifications on my phone even for people I'm following like you. I certainly do know about SBRT for stage IV lung cancer. I just had my second SBRT treatment yesterday. And I'm thrilled to have the opportunity to have this treatment. From all I've read this has better outcomes than either chemo alone or chemo/radiation concurrently. I'm scheduled for 5 total treatments. So 3 more to go and so far I've had no troublesome side effects. I have 1 nodule in my left lung and 2 in my right lung. They are treating all 3 each session. Had standard radiation for breast cancer last year. The difference as far as the experience goes is that standard radiation was 5 days a week for 6 1/2 weeks and the sessions themselves only lasted a couple of minutes each time. With the SBRT I only go twice a week for 5 total sessions, but they are much longer. Took about an hour and forty five minutes for the first one because they were still working on lining up perfectly. Yesterday took an hour or so. The only difficulty is having to lay absolutely still with my arms over my head the entire time. But no big deal. It's not like I'm in terrible pain or anything. And, in my opinion and also that of my Medical Oncologist, this is my best chance of good results long term. I've written all about the process of getting to finally have this treatment and how it's going in other places on here. Let us know what you decide. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

My husband also has V.A. coverage and was recently approved for Veterans Choice Program. So I know it's still available. If they can't get you in in a reasonable amount of time you can be treated at another hospital and V.A. will cover cost. And his condition wasn't nearly as time sensitive. Hope that helps Judy M. Sent from my SAMSUNG-SGH-I337 using Tapatalk

I second Susan's hope that you don't have lung cancer. It's a pain. And also her request that you keep us posted. I'm new here but as far as I know venting is allowed. Lol. Judy M. Sent from my SAMSUNG-SGH-I337 using Tapatalk

Recent brain scan shows no mets. Port is in place without any problems. Radiologist called and they were able to make a plan to do SBRT on all 3 of my tumors. Which means chemo probably eveey 3 weeks instead of every week. Thankful to hear all that. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thsnk you, Tom. Obviously, this is a common experience. Just hope the brain scan doesn't send them into another pow wow and I can get started next week. P.E.T in Feb. showed no spread but that was 2 months ago Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thanks for letting me know you have experiienced the same Suzanne. Maybe it's the usual way. I keep praying, trying to trust God's timing. I comfort myself with knowing He is never late. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Well, I only thought I was starting treatment. They did C.T. and set up for SBRT last Monday and said they'd call me when they had the plan ready. Waited all week and called them Friday. Said they'd been working on my plan all week and would call me next week. Is this normal? It's been 6 weeks since I was diagnosed and I've yer to receive a single treatment. I'm praying for patience Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

What a great idea! You go girl! Sent from my SAMSUNG-SGH-I337 using Tapatalk

My Medical Oncologist's A.P. called me about my port question. She says the Radiation Oncologist will expect a chemo port and they can work around it. Also, that it will be right beneath my collar bone and they can put it on the right if they need to. Plus the radiation field will be very small. Just passing on the info. I got. So, Meloni was right on and I feel much better about getting the thing after hearing from you guys. Thanks to all of you who shared. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thank you Meloni. Thinking left side because I had 2 nodes under my arm removed in surgery last year. They are just being cautious about lymphedema issues on that side. Doubt I'll have any since there were only 2 removed. Thanks so much for sharing. It makes a big difference being able to hear from people who've walked this road when making decisions. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Have sent the info. to the surgeon who'll be placing my port and will probably also ask my Radiation Oncologist what he thinks. Thank you, Tom. Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thank you so much, Julie. I really appreciate you sharing your experience with me. Especially since you've had both. Peace, Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Surgeon's office called yesterday to make appt. to have port put in for chemo. I actually ask my Oncologist if I'd get one because of reading what Tom has said. They will want to put whatever on my left side because I've had 2 nodes removed on the right side. Problem is I watched and Emmi video they sent and it will be right over my upper left lung which is exactly where I'll be receiving radiatiion. This would seem to be a problem. Plus, I didn't care much for the risks involved with having a port implanted in my chest. Shot off a message to my surgeon telling him about the radiation and asking if a Picc line or something else would be possible. My daughter says a Picc can only be placed in your right arm. Anybody had experience with another alternative for chemo and blood draws? Thanks for your help. Will probably be sending a load of wuestions now that treatment is starting. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Tom, Thanks so much for sharing that there were changes during your treatment also. I've been concerned about that at times, but I really like both my Oncologists and have no desire to change. They are at the same hosputal and meet together on a regular basis with one another and my Pulmonologist. My breast cancer treatment was just so straightforward. It was laid out first visit with my Med. Oncologist and went like clock work. I'm learning that this lung cancer is a very different beastie. During my set up for SBRT I didn't itch (thankfully) but my hands go to sleep from being held immobile over my head for so long. Same when I have a P.E.T. scan. Already know and love my Radiation Techs. They are wonderful, caring, cheerful team. Makes a big difference. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Good morning fellow travelers. Was listening to a testimony from a cancer survivor some time ago and she said something I've found helpful, so thought I'd share with you guys. She said, "The disease is going to do what the disease is going to do, the doctors are going to do what the doctors are going to do, and God is going to do what God is going to do. All you have to do is mind your joy." Helps to keep me focused when my mind scatters. Also, read that some studies show that vitamin E may help prevent lung fibrosis resulting from radiation. Suppose it can't hurt to try that. Have shot a note to my Oncologist asking if there are any vitamins and minerals I shouldn't take during radiation or chemo. Did set up session for SBRT yesterday. Radiology Oncologist now says they are going to do SBRT on the 2 tumors in my right lung rather than the one in my left. Then radiation/chemo concurrent on the one in left lung. The plan appears to me to have gone through a number of changes, but I'm happy to be getting SBRT on 2 rather than just 1. I have both a Med. Oncologist and a Radiation Oncologist. Not sure they're communication is always the best. Feeling good today and planning to enjoy it. Hope all of you are also. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Sounds right, Mally. I'm probably using my dx as an invitation to eat since I can't blame it on chemo yet. Now I know I'm not the only one. Sent from my SAMSUNG-SGH-I337 using Tapatalk

I meant more from the chemo than the cancer itself. Sigh. I blame it on my age. Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thanks, Tom. I knew you had lost weight. But sounds like it was more from the chemo than the treatment itself. I've considered that I may be thankful for this extra weight when chemo starts. Sent from my SAMSUNG-SGH-I337 using Tapatalk

This isn't a burning question, but I am curious. So far, I have almost no symptoms from my cancer. A slight cough that has actually gotten gradually better since pneumonia cleared up. My question is about weight. I keep reading that lung cancer causes weight loss. I've actually GAINED weight. I weigh more now than I ever have in my life. Not overweight yet, but getting close. Did any of you gain weight? There are some funny things on this jouney. About a week ago I weighed and my weight was the same so I thanked the Lord that I hadn't lost any weight. Then I had to laugh and say, "Well, Lord, that's the first time I ever thanked you because I HADN'T lost any weight. I'm thankful but also puzzled. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

I'm sorry to hear about your upgrade, but glad to hear you can take Keytruda. Have heard of some good results with that. Telling family is very difficult. I also have 4 grown children. We'll keep praying for one another and trusting God's heart. Bless you. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Cindy He referred to N.C.C.N. or National Cancer Committee when he said this treatment had just come in to standard of care. Tried to look it up, but you have to log in. Could get far enough to see that non small cell lung cancer ( which is what I have) had just been updated. Hope that helps if anyone wants to look into it further. Will keep you guys updated on how it goes. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

He told me it was just coming in to standard of care. Looked it up somewhere and now he says it's standard of care. I have a recording of where he said this. I'll trying to find where he refers to it and post it for you. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

I think it was the result of a study my Medical Oncologist was a part of. If you google Durrani Oligometestatic Lung Disease you can read it on the net. So far I have no spread anywhere else. Only in my lungs. That's my best guess Cindy. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Thank you, Tom. The Oncologist explained it to me as treating each lung as a separate cancer. It's different. Have a brain M.R.I. scheduled end of next week right after start ( or completion-don't know how many treatments I'll have yet) of STBR. P.E.T. in February showed no mets. Praying that's still the case. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk

Finally got a date to start treatment. Will begin next Tuesday. Learned why the Radiology Oncologist didn't want to do the stereotactic surgery on all 3 nodules as the Med. Oncologist originally wanted to do. He felt that it would be too toxic to do stereotactic concurrent with chemo. But, from what Tom has said that may still be an option down the road if necessary. So, stereotactic on the 1 nodule in left lung which is the largest and then radiation concurrent with carbo/taxol on the 2 in the right which are both less than 1 cm. Was looking at my health record on an app my hospital provides the other day. Rather than saying I have stage IV it reads that I have stage I left lung and stsge III right lung. Find that interesting. Has anyone else seen that? Hope you guys are all feeling good today. Still praying for you Suzanne. Judy M Sent from my SAMSUNG-SGH-I337 using Tapatalk