Renate Posted August 7, 2009 Share Posted August 7, 2009 Had my last Chemo in May 2008 and had to stop any further treatments due to severe Neurapathy.My Neurologist put me on Fentanyl. I got weaker & weaker, was most of the time in Bed with pain. Could hardly walk anymore, The Neurologist told me, this is what Nuropathy does.In Febr. 2009. Medicare appoved a Power chair. I had lost 20 Pounds. The end of May, my husband said you have to go to a Pain Clinic. At About the same time I forgot to replace the Fantynyl PAtch for 3 Days and realized it did not do to much to control the pain, and I did not replace it anymore. I was feeling better and better every Day. I got my strengh back, I am driving my car again after 1 1/2 years. I gaine weight and doing geat for the first time in one year. Recently I had a CT Scan and ond of course my Cancer has grown. Still everything inside the lungs. My Onco recommended 6 weeks of Radiation. I am scared what side effects I will have to endure. Any input? I just found my life again two month ago. And here we go again. Would love to hear from you. Renate Quote Link to comment Share on other sites More sharing options...
Patti B Posted August 7, 2009 Share Posted August 7, 2009 ((((Renate))) I am so sorry that I have not emailed you in a while. Kind of ashamed of myself but life has had its up and a lot of downs lately. I am so glad that your neuropathy has gotten better - I remember how bad that was for you. As far as the radiation to your lungs - I cannot answer that. I am just finishing up whole brain radiation but the side effects will be much different for you. Others will come along soon who have had lung radiation and will let you know. Its so good to hear from you. I have thought of you often. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 7, 2009 Share Posted August 7, 2009 Dear Renate, Well aren't you just a BRIGHT FLOWER in the garden of lung cancer to see. Wow, so the Fentanyl was doing all that too you??? WOW, I believe it! These meds can play havoc on our bodies and sometimes we figure it out and sometimes we don't. I am SOOO HAPPY to see your up and about and doing so better! It's been a long time that I did my radiation but, fatigue is one of the common side effects of it. It also depends where they are radiating you on your chest area. I am just so happy to see you back. You go Girl! (((((((((((((((Renate)))))))))))))))))))) Quote Link to comment Share on other sites More sharing options...
Carleen Posted August 7, 2009 Share Posted August 7, 2009 Hi Renate, I'm glad to hear that you are feeling better. Boy what a crazy journey you've been on, and all because of the medication that was supposed to be helping you. I am so happy things are looking brighter for you. When my husband had his radiation he did have fatigue, but he did not experience it nearly as severely as when he was on chemo. His biggest complaint was when they radiated a spot that was close to his esophagus. It causes a pretty bad sore throat and he had difficulty swallowing. For that we made him up a potion called Magic Mouthwash, which seemed to help him quite a bit. I don't recall the recipe anymore, as it's been a while. I think you can actually buy it somewhere premade, otherwise I think there may be others on here who have the recipe, as this is where I got it from. (Thanks guys) The other issue he experienced was later in the radiation cycle. The continued radiation to a set spot caused redness and dryness to the skin, sort of like a sunburn. For that we got him a really really good moisturizing lotion and I also applied aloe, just like I would for a sun burn. I hope the radiation does amazing things for you with minimal to no side effects. God Bless you! Quote Link to comment Share on other sites More sharing options...
cat127 Posted August 7, 2009 Share Posted August 7, 2009 My sister did concurrent chemo/rad and honestly she breezed through it. Very little effects at all. And she had positive mediastinal nodes so the radiation was right over the esophagus. As she told the Dr at one appt, it isn't like she was able to eat crunchy, crusty bread or anything. That she had to dunk in soup first. So she did modify her diet a bit because the esophagus was a bit sore, but never enough for her to need the 'magic swizzle', or magic mouthwash as it is also called. The rad onc can write you a scrip for that so you can have it on hand if needed. There are several recipes for it, but ultimately it is viscous lidocaine to numb the throat. Other things that can be added to it include benadryl, maalox, kaopectate. Here's hoping that you don't have any bothersome side effects from it, sounds as if your pharmacological side effects have been many and problematic. Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 7, 2009 Share Posted August 7, 2009 Renate — what a joy to hear from you! I can't help with your radiation question, but do want to say I'm absolutely delighted you're feeling better. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Renate Posted August 7, 2009 Author Share Posted August 7, 2009 A warm hello to all of you. was thrilled to hear from you. Patti,so sorry to hear you have to go through radiation again. Hope it goes well. Yes, It was the Fentanyl that dragged me down. I got weaker and weaker. Monday 8/10 I will have a Pet Scan. Will take it from there. Thanks for the advice about the radiation. I would like to shorten my profil and do not know how to do it. I am sure Ned has some ideas? Thank you in advance. Wanted to go to Germany to see my Family, I think this will have to wait. Renate Renate Quote Link to comment Share on other sites More sharing options...
jaminkw Posted August 8, 2009 Share Posted August 8, 2009 Renate, good to see you back. I can empathize with your disappointment in just getting your life back only to find out your cancer has progressed. I went off chemo for six months and somewhere in the middle of it, I went on that "feeling normal" high only to begin to feel my energy slip again and find out with the second scan that my cancer had progressed. Hang in there. I've heard good results from many people here who were candidates for radiation. I think if you get the sore throat/eating thing and get that knocked, I'm sure you'll do great. Judy in Key West Quote Link to comment Share on other sites More sharing options...
blaze100 Posted August 10, 2009 Share Posted August 10, 2009 Hi Renate, They zapped my right lung and mediastinals too. I thought radiation was easier and less scary than chemo. They said it might burn my throat - so I drank iced green tea on the way to radiation and had a large vanilla shake immediately after radiation. My burn in my throat was minimal, but I couldn't eat pizza or cranberries. I also used radiacare gel on the skin and did not get much of an outside burn. Hope you come through with no problems. Barb Quote Link to comment Share on other sites More sharing options...
babylove91297 Posted August 10, 2009 Share Posted August 10, 2009 Hi Renate, I haven't posted much on these boards in awhile, but I do know about some of the side effects of the radiation. I took 35 treatments to my chest and back starting in July of last year. After the first week of radiation I had to take a week break because of the burns to my esophagus (sp?), I had lost about 10 pounds, it was hard to swallow anything, but I felt better by the time I started back, and the changed the position of the radiation so it didn't happen again. I did however get bad burns on my chest and back, they gave ointment for it. Also it was hard to be out in the sun for any length of time. And yes it does zap a lot of your energy, but I worked the whole time while I was doing my radiation. I hope this helps, Bobbie Quote Link to comment Share on other sites More sharing options...
recce101 Posted August 11, 2009 Share Posted August 11, 2009 Sorry, I've been busy with appointments and missed this earlier. Click the "Profile" button above, scroll down to the "Signature" block, add or delete as desired, scroll all the way to the bottom, and click the "Submit" button. Let me know if that doesn't work. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Renate Posted August 11, 2009 Author Share Posted August 11, 2009 Thank so much you Ned, it works. I could not answer and thank all of you for your replies, due to being attmitted to the Hospital last week. My Cardialigist sent me to the Emergency room, he thought I had a stroke. MRI and Ct Scan of the brain did not reveal that. I had dizzy spells & blurry vision, could hardly see anything. Now I have to see a Neurologist again. This was like an episode of my Neuropathy. And all of this above getting Radition soon. HAd a Pet Scan yesterday, see the Onco today. From all the side effects you have told me about, it scares me to death. Renate Quote Link to comment Share on other sites More sharing options...
Connie B Posted August 11, 2009 Share Posted August 11, 2009 So sorry to hear you were in the Hospital Renate, I'm glad your donig better. This lung cancer ride holds all sorts of surprises and some days the road gets a little bumpy. Stay strong and keep in mind, this to shall pass and you can do this and you can beat this. When I did my radiation I too had some radiation burn in my throat area after about the 4th session it started to bother me. A little tough to swallow. My suggestion to you is KEEP YOUR DOCTOR in TUNE of how your feeling throughout your treatments. Don't hold anything back. If your throat burns BAD then tell them. But there are things they give us to help with that discomfort. Mine wasn't all that bad, and only lasted about a week. But I also know others that have said the same things. Yes there are the horror stories of radiation, but there are also the stories that aren't of horror. I'll just send up a prayer for you that our on the good side. If you get SOB (short of breath) Let your doctor know right away. I just have a feeling your going to be very tired from this, and if your body is tired, then listen to it and rest, rest, rest. When this is all over the hopes are you will be cancer free and on your way to becoming cancer free and/or in remsission. Find the Silver lining in all this, your going to make it and your going to be a long term Lung Cancer Survivor. Quote Link to comment Share on other sites More sharing options...
Renate Posted August 11, 2009 Author Share Posted August 11, 2009 Hi Connie, Thanks for your good wishes and advice. I am sure I will come back to the board crying for help. My Onco said there is a only 30 % chance of survival. Not very promising. Last night I thought if it's worth to go through with the radiation treatment? Will see the Onco today and hear about the Pet Scan results. Renate Quote Link to comment Share on other sites More sharing options...
Snowflake Posted August 11, 2009 Share Posted August 11, 2009 Renate, Radiation is livable. The pain in swallowing does not start on the first day, it is cumulative and continues after the zapping stops. When my throat first started feeling sore, I started drinking a shot of pure aloe (comes in a jug for drinking, not the gel for burns) four times a day. When the burning was more severe, I was given some nasty stuff to drink after taking the shot of aloe, I can't remember the name of the prescription, but it was an old ulcer remedy and coated the soreness. On the bright side, I ate Double Stuf Oreos and lost weight! I also was told to buy a pure aloe cream for the burn that could happen on my skin. My skin pinked up, and then "tanned" so it enhanced my cleavage by making the shadows darker (hey, a girl has to find the positives). As for the 30% chance of survival, don't look at it as a 70% chance of non-survival. Change your view, SOMEONE has to be in that 30%, why not you? I've beat the odds of 8-15%, I'm sure glad I didn't give up in the beginning or I wouldn't have made it! Set your cap to being the survivor and seek treatment in that frame of mind. You WILL beat this, you WILL throw everything at it you can, and you WILL know when to say when - it's just not right now. The dizzy spells? Could it be a bit of stress and anxiety, all things considered? Geez, when it rains, it pours... Remember, one day at a time, one breath at a time. You can do this, one step at a time. Take care, Becky Quote Link to comment Share on other sites More sharing options...
Renate Posted August 11, 2009 Author Share Posted August 11, 2009 Hi Patti, Have you finished your radiation? And how has is affected you? I hope very much the Mets have disaapeard. Have been thinking about you a lot. Aws good to hear from you. Hugs Renate Quote Link to comment Share on other sites More sharing options...
Renate Posted August 12, 2009 Author Share Posted August 12, 2009 Hi Carleen, I am so sorry about the loss of your husband. He passed away much too early. I always think I had my life and when I see young people in the Chemo room, my heart goes out to these fine young men and or women. I hope you will be healing a little bit as the years go by. Thank you your input was helpful. Renate Quote Link to comment Share on other sites More sharing options...
Renate Posted August 12, 2009 Author Share Posted August 12, 2009 Your Sisters radiation treatment sounds encouriging. I hope I will be as lucky as she was. Thank you for responding. Renate Quote Link to comment Share on other sites More sharing options...
Renate Posted August 12, 2009 Author Share Posted August 12, 2009 Dear Connie, It's always nice to hear from you and see your picture, you are a long time Cancer survivor. As you said I will rest whenever I am tired. When I had my 36 radiation treatments in 2005 for Cancer in the Anus I slept most of the time. I had no burns on the outside, but inside and it is still sore and hurts sometimes. Thank you for your input. Renate Quote Link to comment Share on other sites More sharing options...
Renate Posted August 12, 2009 Author Share Posted August 12, 2009 Hi Becky, I am extemely happy to hear you are Cancer free. What a wonderful feeling. You gave me a lot of encouregment I thank you very much for all your advice. When I had Chemo in 2005 for cancer in the anus canal, I had very bad blisters in my mouth. It was very painful. The Doctor gave me a prescription to coat the inside of my mouth it helped a lot I do remember now since you mentioned it. I guess I will go through with it like everybody else. Renate Quote Link to comment Share on other sites More sharing options...
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