Ruthie50

I have stage 3B NSCLC which was found to be inoperable. I took chemotherapy and radiation everyday, Monday - Friday from 12/14/15 to 2/5/16. My first 3 months followup in May, showed the tumor was in remission. However my second 3 month followup showed the same results but with a few complications. I was diagnosed with radiation pneumonitis and have been on strong steroids since September with hopes of stopping after 10 weeks. As a result, I have gained 15 unwanted pounds. I also started having some odd symptoms and went to my heart doctor,. The blood work showed that my thyroid numbers were "really bad." My face is really swollen and I now have a goiter . I will be seeing my family doctor on Monday to follow me on the thyroid medication. He wants me to see an endocrinologist because there were nodules on the thyroid but the earliest appointment I could get locally is 12/23/16. Has anyone else had side effects from really strong radiation and chemotherapy?

22 Replies

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  • Sadder Sunday, sorry to hear about your condition, and truly hope you will feel better soon. I am sitting and writing this reply the chemo really tore me up, I am totally wore out, throat hurting and my wife telling me to get something to eat, apparently she doesn't understand the pain associated with radiation therapy.

  • I'm a retired RN with stage 4 Adeno Carcinoma of the lung. Diagnosed 4 + years ago. Being treated the the Cancer Treatment Centers of America. Superb care and I owe them my success. Sloan Kettering gave me months to live. I strongly urge and recommend a radical change in diet to reduce inflammation and boost your immune system. You need to give your body the arsenal of ammunition to defeat this monster awakened in you. I urge you to buy the book and follow the nutrition recommendations of "Anti Cancer A New Way of Life", by David Servan-Schreiber M.D., PhD. He was a brilliant neurologist diagnosed with a malignant brain tumor with a few months to live. With a lot of research and studies he altered his nutrition and survived 15 more years. He cites many nutritional changes with facts and figures to back up each suggestion. He's done the homework for us. This has become my bible. Give your body the chance it needs and deserves. Put the odds in your favor. He does recommend traditional treatment but that alone is not enough. Wishing you the best and my prayers are with you. Please be in touch anytime if I can help with any questions...

    Roberta

  • I'm a retired RN with stage 4 Adeno Carcinoma of the lung. Diagnosed 4 + years ago. Being treated the the Cancer Treatment Centers of America. Superb care and I owe them my success. Sloan Kettering gave me months to live. I strongly urge and recommend a radical change in diet to reduce inflammation and boost your immune system. You need to give your body the arsenal of ammunition to defeat this monster awakened in you. I urge you to buy the book and follow the nutrition recommendations of "Anti Cancer A New Way of Life", by David Servan-Schreiber M.D., PhD. He was a brilliant neurologist diagnosed with a malignant brain tumor with a few months to live. With a lot of research and studies he altered his nutrition and survived 15 more years. He cites many nutritional changes with facts and figures to back up each suggestion. He's done the homework for us. This has become my bible. Give your body the chance it needs and deserves. Put the odds in your favor. He does recommend traditional treatment but that alone is not enough. Wishing you the best and my prayers are with you. Please be in touch anytime if I can help with any questions...

    Roberta

  • This is my first time on here and my husband has nsclc he will be starting Radation next week. Thanks for the suggestion to buy the book. Going to Amazon now to see if they have it.

  • Tell your husband to try to stay positive and God bless!

  • Its worth following the nutritional suggestions. If it gets to medical just be sure to go to the chapters where the doctor gives the dos and don'ts for food. I can tell you drink lots of green tea, stepped 10 min and drink within the hour, use turmeric whenever, wherever with a pinch of salt. Stay away from processed foods (all the white carbs). Eat organic raw fruits and veggies. If you can eat organic free range poultry and organic grass fed beef. Nuts are good too and dark chocolate 70% cocoa or more. I am so strict about what I eat. You need to reduce inflammation (which is fuel for cancer cells) and you need to boost your immune system to fight off this monster that has the nerve to set up home and grow inside your hubby. This is healthy eating for the entire family, the entire world and eventually the government will crack down on the food industry to stop killing us. 1 out of 3 cancers are food related.... This change in nutrition is vital and will give your husband some odds in his favor. Wishing you guys the best of luck and lots of prayers for you. Just holler if you have questions.

    Roberta

  • please forgive the typos. I should have proof read.... steap tea.... too medical.... the rest looks ok... lol

  • Radiation caused my throats and esophagus to be raw. My doctor gave me a medication with Lidicane in it to help numb my throat so I could swallow. Even with the medication, eating was painful. I had to eat only soft foods and that got old real quick. I forced myself to eat but I didn't want it. I pray your treatments end soon. It took about 6 weeks after the last treatment to be able to eat without pain.

    No one understands better than someone who has been through it. Hang in ther as this too shall pass.

  • @Ruthie1950 I don't know much about what your going thru but my oldest daughter. Got thyroid disease and dr.s kept telling her its all in your head. Well we found a dr. who knew what it was she almost died and the dr.put her on meds for it . She didn't have cancer thank god. But Ruthie remember your Guardian Angel is there by your side she will always be there for you.I care if you need to talk i'm here @Jo

  • JoTaylor

    Thank you for the words of encouragement. I am on medication but it doesn't seem to be doing anything. I will see my doctor tomorrow and plan to discuss it with him. Hopefully he will be able to give me some relief.

  • Yes chemo and radiation wiped me out. But once stopped on opvid(spelling is a piece of cake

  • As a nurse practitioner I can tell u your primary can handle u until ur endo appt. so don't worry about that. And yes I just finished radiation on my cervical spine and I can hardly swallow. And I'm nasused most of the time. I'm not sure what from.

  • Lalukie

    I'm so sorry you're going through this. My diet pretty much consisted of tomato soup, mashed potatoes, puddings, oatmeal, etc. I'm sure it wasn't what my body needed and most days I really didn't care if I ate anything or not but my family and doctor insisted I eat. It will pass but it takes time after your last treatment. Right after a radiation treatment, I would be very weak and tired. I was nauseous because of the chemo. The doctor should be able to give you something for the nausea. I hope your treatments work and end soon.

    God bless you.

  • Ruthie1950 - I have read this thread and like everyone else, wishes the very best for you and hope you can stay up-beat, strong and forward looking.

    During my years of struggle with cancer, I have come to understand, as the song said, "One things leads to another", when thinking about and dealing with cancer treatments.

    The most important thing to toss away is any weight gain from taking steroids. The weight gain is just a way your body shows you, that you made a life and death decision. You decided to live a bit longer. You will lose that weight, and who cares if you don't? You are still here, and that is really all that matters.

    I am dealing with my 3rd and 4th cancers. I am terminal by just having my 3rd, which is HPV Lung Cancer, and the 4th was found during treatment for the lung thing. I went through an Immunotherapy clinical trial at Johns Hopkins in Baltimore at the very start of my treatment regime. During my 8th week I was pulling out due to a complication that included pneumonitis. I was given a huge dose of steroids, and I also gained a bunch of weight during the recovery period of the pneumonitis.

    So, I was more or less given the last option, which was chemotherapy. My cancer is inoperable, and radiation would not help. Which meant I had only two choices. Chemotherapy or nothing. I opted for chemo.

    I almost died in July when the port they implanted in my chest went septic, and I spent a week in the hospital after a few days in the ICU. However, I am almost used to having to deal with new issues while fighting the main issue. This is just a part of the whole process. Your body is being hit hard with all kinds of things, that create a different set of problems.

    I guess, in my long winded way, I am suggesting you only worry about two things and those are your quality of life, and how many tomorrows you see. I know that is not much to hang your hat on, but sometimes that is all one needs.

    Keep us posted, keep winning the night with each sunrise and only worry about things you can control. By the way, I lost all the weight I gained when I went on steriods and I am still here. Being here is all that really matters to me, my family and my friends.

    Mike "Serrecko" March

    Leader of the Skyline Gaggle of Noobs

  • Serrecko,

    Thank you for the words of encouragement. I also received treatment and follow up visits at the Sydney Kimmel Cancer Center at Bay View, Johns Hopkins. Everything your telling me is true and I do totally thank God for every day He has given me. I realize the time I spend with my loved ones is a gift from Him.

    With that being said, I guess I wasn't expecting any of the after effects of the treatments and so every time a "new" one arises, I wonder what is next! I'm a glass half full person and really do make the best of the current situation.

    You have been through so much and I'm glad you're still here to continue your story. I pray you know the Lord as your personal Savior as He is the great physician. I had brain surgery in 2013 to repair two aneurysms and in February 2015, I had half of my colon removed because of cancer. I know that I am only here because of God's mercy and grace on my life. I'm not giving up and I'm glad to hear you're not either.

    God bless you and your family on this journey called life.

  • Ruthie,

    I am sorry for all you have gone through, and are now enduring. It does sound like your medical team is staying on top of things, and that you are a very good advocate for yourself - all good things! Thank you so much for sharing all of this, and for helping others in this community with your wisdom. It is a pleasure to be a small part of this group; blessings to all of you.

  • Yes, I have and having a hard time still. Basically same as you. Nsclc last oct, rad and chemo 7 weeks, shrank the timers but after back to work, radiation pneumonitis, low lung function, and now disabled and oxygen. Can't treat now with much because of lungs. Tried Gemsar, Opdico, now trying tercevo pill tp maybe slow down. My lungs are shot now. Good luck and God bless to you

  • NancyG55,

    I'm so sorry your health has not improved. I pray God will strengthen you and give you His peace that passes understanding. I have found that if I keep my mind occupied and not allow myself to dwell on my present circumstances, I feel stronger and better. I love to read and even cleaning out closets, drawers, etc., helps to take your mind off of things.

    May God bless you.

  • After my radiation and chemo ended in May. I developed radiation pneumonitis in June. I was out on 60 mg of prednisone fir six weeks and then they tried to wean me. In August the pneumonitis was worse so I was put back up to 40 mg for 8 weeks and now I am at 20 For 8 weeks. I too have to see an endocrinologist because my blood numbers are whacked for my thyroid. My appointment isn't until November. I was also told that getting what is left of my lung (I only have the right upper love left since surgery) to heal could take up to a year. In additiin to the oral steroid I am also on an inhaler with a steroid as well as a rescue inhaler which I use occasionally. Also during the 60 mg treatment of prednisonebi gained 10 pounds. when they lowered and then increased it again I was so upset about the weight gain I decided that I was not going to gain weight my hope was to at least maintain during treatment so I joined Weight Watchers and trackvd everything I ate I actually have lost 8 pounds since the beginning of September and I cannot exercise due to shortness of breath the steroid has given me the moon face but they said that is normal with the steroid

    I also developed neuropathy in my hands and feet as well as some hearin issues with my left ear since surgery.

    At least the cancer is gone. I have tried to cut out processed sugar as much as possible and no more diet drinks or food with fake sugars. My husband and I juice a vegetable muxture that is high in anti oxidants which smells and tastes nasty until you get used to it drinking a pint a day.

  • SAdams,

    Thank you for your response. I am not in my eighth week of prednisone at 10mg with a call from the doctor every week to discuss how I'm doing. I shouldn't complain because I'm still able to do a lot of what I was doing previously since starting the steroids.

    It sounds as though you're handling your circumstances well and Also keep an eye on your caloric intake. I pray you do well and that the pneumonitis improves and you won't have to take any more steroids.

    God bless you.

  • I'm a retired RN with stage 4 Adeno Carcinoma of the lung. Diagnosed 4 + years ago. Being treated the the Cancer Treatment Centers of America. Superb care and I owe them my life. Sloan Kettering gave me months to live. I strongly urge and recommend a radical change in diet to reduce inflammation and boost your immune system. You need to give your body the arsenal of ammunition to defeat this monster awakened in you. I urge you to buy the book and follow the nutrition recommendations of "Anti Cancer A New Way of Life", by David Servan-Schreiber M.D., PhD. He was a brilliant neurologist diagnosed with a malignant brain tumor with a few months to live. With a lot of research and studies he altered his nutrition and survived 15 more years. He cites many nutritional changes with facts and figures to back up each suggestion. He's done the homework for us. This has become my bible. Give your body the chance it needs and deserves. Put the odds in your favor. He does recommend traditional treatment but that alone is not enough. Wishing you the best and my prayers are with you. Please be in touch anytime if I can help with any questions...

    Roberta

  • I'm a retired RN with stage 4 Adeno Carcinoma of the lung. Diagnosed 4 + years ago. Being treated the the Cancer Treatment Centers of America. Superb care and I owe them my life. Sloan Kettering gave me months to live. I strongly urge and recommend a radical change in diet to reduce inflammation and boost your immune system. You need to give your body the arsenal of ammunition to defeat this monster awakened in you. I urge you to buy the book and follow the nutrition recommendations of "Anti Cancer A New Way of Life", by David Servan-Schreiber M.D., PhD. He was a brilliant neurologist diagnosed with a malignant brain tumor with a few months to live. With a lot of research and studies he altered his nutrition and survived 15 more years. He cites many nutritional changes with facts and figures to back up each suggestion. He's done the homework for us. This has become my bible. Give your body the chance it needs and deserves. Put the odds in your favor. He does recommend traditional treatment but that alone is not enough. Wishing you the best and my prayers are with you. Please be in touch anytime if I can help with any questions...

    Roberta