Judy M.

Had scans last Wednesday and started chemo on Thursday. Doc is wanting to keep scans his little secret until I see him on Wed. I may let him. Lol. Not too bad until this morning when nausea hit in spite of meds. Lemon water and peppermint candy is helping, so thought I'd pass that along. Hope all you guys are doing well.
Judy M
 
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Had scans last Wednesday and started chemo on Thursday. Doc is wanting to keep scans his little secret until I see him on Wed. I may let him. Lol. Not too bad until this morning when nausea hit in spite of meds. Lemon water and peppermint candy is helping, so thought I'd pass that along. Hope all you guys are doing well.
Judy M
 
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I just got my chest CT scan results from my pulmonologist.  NED! yay! Now I'm waiting to hear from my gynecologic oncologist wtih the results of the CT for the lower half of my body, done the same day. Everybody is so specialized!

Hi Julie, I can understand being freaked out by radiation.  We've all heard that radiation can cause cancer, right?  I've had radiation for two different primary (non-lung) cancers and the effects were different. And I'm still alive, but most recently have had cancer #3, lung. In 2008, I had radiation for breast cancer. I had some burns-- about 2/3 of the way through I developed a severe sunburn-like rash over a fairly large area, and later  blistering, peeling and rawness over a smaller area. Highly unpleasant, but it healed with only a slight redness ( think of the broken veins on an alcoholics nose), and no other scaring. No significant fatigue during ot after. When chemo/radiation was proposed for my gyn cancer in 2011, I was worried about burns and talked to the rad onc about it. She said that skin effects were very unlikely because the radiation was given in a differnt way--as I understnd it, the machine emitting the beams circled around me so that the radiation was more concentrated internally and not so much on the skin. In fact I had no skin effects at all but did have the digestive issues described in my  previou s post.
I recommend that you talk to the rad onc and find out exactly how the radiation will be given and what side effects you can expect. 
I'm NED on both radiated cancers. I'm amazed, especially for the gyn one which was very aggressive and had a poor prognosis. I'm also really grateful  I'm a survivor of 2 courses of radiation, 2 courses of chemo and 3 cancer surgeries. Hang in there, treatment works, even if ti's unpleasant at times.

Julie
I had the standard radiation treatment of 33 treatments taken 5 says a week for 6 1/2 weeks for another cancer and just completed 5 S.B.R.T. treatments for lung cancer. I had no trouble at all with it other than some skin redness sort of like a mild sunburn and not painful just itchy. And one cannot scratch it. Very bad idea. That's asking for infection. Will tell you what my Radiology Oncologist told me since it worked very well for me. Use only Dove soap and just sqeeze soapy water over the treat area. Do not rub that area ever. He also had me apply aquaphor on the treated area 1-3 times a day. You can get it at Wal Mart. And the treated area would sting a bit immediately after sometimes. I'd put ours Aloe Vera gel on it before I got dressed again and that would stop it. You can get that at Wal Mart also. I'd heard the horror stories, but had very little trouble with radiation treatments. I'm the opposite. Getting ready to have chemo for the first time next week and wondering how I'll reacte. Seems no one knows because everyone is different. That may be true with radiation also. Don't really know. Just sharing my experience. Hope yours is as easy as mine have been.
Just M

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Pure Aloe Vera gel. I hate this new phone.

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Julie
I had the standard radiation treatment of 33 treatments taken 5 says a week for 6 1/2 weeks for another cancer and just completed 5 S.B.R.T. treatments for lung cancer. I had no trouble at all with it other than some skin redness sort of like a mild sunburn and not painful just itchy. And one cannot scratch it. Very bad idea. That's asking for infection. Will tell you what my Radiology Oncologist told me since it worked very well for me. Use only Dove soap and just sqeeze soapy water over the treat area. Do not rub that area ever. He also had me apply aquaphor on the treated area 1-3 times a day. You can get it at Wal Mart. And the treated area would sting a bit immediately after sometimes. I'd put ours Aloe Vera gel on it before I got dressed again and that would stop it. You can get that at Wal Mart also. I'd heard the horror stories, but had very little trouble with radiation treatments. I'm the opposite. Getting ready to have chemo for the first time next week and wondering how I'll reacte. Seems no one knows because everyone is different. That may be true with radiation also. Don't really know. Just sharing my experience. Hope yours is as easy as mine have been.
Just M

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The only thing I know is that an elevated white blood cell count usually means you have an infection. It's an indication your immune system is fighting something.
Just M

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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
 
 
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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
 
 
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Suzanne
Welcome. Our stories are SO similar. Which you know if you've read my posts. I also just recently joined this group and it's been very helpful. I was diagnosed with breast cancer February last year. Had surgery and radiation and everything was going great. Then developed pneumonia in Jan. which eventually lead to disgnosis of stage IV adenocarcinoma in March. Not a spread of the breast cancer, but an actual primary lung cancer. My birthday is also in March and had the P.E.T. scan the day before my birthday. I also quit smoking 17 years ago. Ironically, if my research is correct my cancer is the type nonsmoking women usually get. This certainly wasn't a part of my plan for my life. I'm still waiting to get started on my treatment. See my Oncologist again tomorrow, so maybe things will get rolling then. I've been ( as another member put it so well) freaked out off and on. It's a stunning thing to get hit twice with 2 separate cancers. But my Oncologist's N.P. says both are adenocarcinomas. I didn't know that. Don't know that I have any great advice or info. But I can certainly assure you that you aren't alone. Right now my faith in God is holding me together. It goes like this: I freak out, I run and cry out to Him in prayer, He gives me peace in my heart and mind, repeat. Then repeat again. He knew this was coming and I'm trusting that though it wasn't part of my plan it is part of His and He knows what He's doing. Please, keep us updated on how things are going with you. I'm so glad you've become part of this group! No the reason for joining of course, but the choice to join and share your journey.
Judy M.

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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

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Julie,
First, what was the reasoning for denying the treatment?  You and your physician have the right to appeal the decision. Your coverage should provide a process for both standard and expedited appeals.  If you can, either post here or message me the name of your insurance company and (this is key) the number in the lower left corner of your policy or certificate.  This is the form number and, once I have that, I can see the approved contract.  Perhaps my 25+ years writing contracts in the health insurance industry may help someone.  

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

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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

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Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization.
 
I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!!
 
DON'T EVER GIVE UP!! No matter what they tell you!!
 
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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.

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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.

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What a great idea! You go girl!


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Hi, Brenda.  I understand your anxiety.  My grandmother had SCLC and had treatment for the entire 13 months she was ill.  But, as Bridget mentioned, there have been amazing advances in both treatment and in management of side effects.  I'm not saying it's all sunshine and flowers, but it's light years ahead of where we were just 5 years ago.  There are so many long term survivors here.  Wouldn't you love to be able to thumb your nose at cancer and say that you won?  We're here for you.  We've walked (or are walking) in your shoes.  

Brenda,
This is a good place to express your feelings. Your concern is a family history and believing family outcomes will occur with your treatment. 
Cancer is a disease of our genes but I don't believe treatment outcomes are strictly governed by genetics. Why?  There have been many advances in treatment and some of these are genetics based. Surgery is a good path to no evidence of disease (or NED) that is our goal. So try that path and see where it leads. 
Let us know how you are when able. 
Stay the course. 
Tom

Hi Brenda, 
Cancer is anxiety provoking, no question about it.  There is hope, though. To me, treatment is totally worth it. I just came back from Lungevity's Hope Summit.. I met  a  lot of people who have survived many years with advanced lung cancers and who have good quality of life, too! I wish you could have been there! There were also presentations about advances in treatment for LC. There are so many new and effective ones that old statistics are no longer relevant and people's experiences are different than they were a few years ago. 
I'm fortunate in that my lung cancer was found and treated early (Stage 1A). I had VATs surgery to remove my right lower lobe and my recovery was easier than I had expected. I don't need any further treatment right now, but I'll have regular CT scans to watch for possible recurrences. The info I got at Hope Summit was reassuring. If my cancer does recur, I know I have treatment options and the prospect of continuing an active life.
You've had terrible experiences with family members who had cancer. I understand your dread. But hang in there! Things are different than they were 9 years ago and your cancer experience is likely to be different than what you've seen.
This site is a good place to get info and support. Keep us informed, both of your treatment  and your feelings. 

Judy - good news all the way around.  I think I sweat the brain scans more than any other scans.

Glad for the good news! My prayers are with you.

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
 
 
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