Posted by Bear1 on Aug 26, 2020 2:47 pm
This morning, I received an early-morning call from the radiation oncologist. She had changed her mind about the radiation risk, which confused me. I later spoke with the ablation radiologist and he agreed about going with radiation instead of ablation. I am quite worried about the sudden change of plans as well as the potential side effects of radiation.
I am wondering if others have had troublesome side effects from radiation (no chemo included) and how difficult they were (are) to deal with? And how effective radiation has been for you.
I have researched radiation treatment, but would like to hear personal stories. Thanks in advance if you care to respond.
Connie (Bear 1)
Posted by Smalls555 on Aug 27, 2020 6:52 pm
I've had radiation without chemo and it was totally painless with minimal side effects, but not everyone is the same. For me, there was some fatigue and when I had it on my head I lost a lot of hair. When my lung was treated with radiation I did get a worsened dry cough for a few days before it started to get better. I also had a kind of ache in my back and throat but both were minimal and I didn't need any pain meds.
Honestly I'd say the only part that made me squirm was when they gave me tiny dot tattoos as markers (I've never been tattooed otherwise).
I hope things go as well for you as they did for me!
Posted by WestCoastSailor on Aug 29, 2020 12:57 pm
It has been a roller coaster ride for sure, shifting treatment plans can make it seem like the docs don't know what they are doing. In fact there is usually a lot of thought and collegial discussion going on. And they are trying to make the best choices with you. Ultimately it will be your decision. Gathering information is great.
My own radiation experience was generally positive also. Sure they burned my esophagus which resulted in regular heartburn issues. But I can control it with diet (stay away from spicy and greasy food which I don't always though I know what the consequences will be) and medication. I had aggressive chemo at the same time so it would be hard to sort out which effects were due to what. Fatigue is an issue but I think that will be true of any treatment. For what's worth, I'm planning on running in the 5K run for a cure on Oct 4th, two years after my treatment and even though my cancer is much more advanced (Stage 4.)
Thanks for your questions.
Posted by gladup on Aug 29, 2020 3:20 pm
Posted by jorola on Aug 29, 2020 5:46 pm
My husband had radiation with concurrent chemo. He had about 7 weeks of radiation, 5 days a week at a very high dose as he was only 40 years old and the doctors were doing a hail Mary. He had fatigue of course but with managed with naps. The one problem my husband did run into, but it did resolve itself, was burning to his esophagus due to the location of his tumor. I will add he was stubborn and did not say how much pain he was in with swallowing liquids or foods for some time so it did get more out of hand than it probably should have. His tumor was partially in his bronchial tube. For part of his treatment, they focused the beam even more on that part which caused probably most of the burning. Again, with medications (liquid painkillers) and time, this did resolve itself in a few weeks, although he did lose quite a bit of weight in the meantime. Still not everyone experiences this or as bad as my husband did. This is just his story. As you can see from the others stories, radiation is for the most part handled very well. Even in hubby's case, it was managed and he has been cancer free from stage 3b cancer for over 6 years now.
Posted by Bear1 on Aug 29, 2020 6:12 pm
My cancer is on the outside wall of my right lung. I don't now if that would affect my esophagus.
I guess I'll find out on Wednesday when I have my "simulation," etc.
How wonderful that your husband has been cancer-free for over six years! That gives hope to me and, I'm sure, to others.
Bear 1 (Connie)
Posted by Little Bud on Aug 30, 2020 1:31 pm
I was my father’s caregiver 17 years ago, seems like yesterday now, when he was diagnosed with lung cancer. After 3 rounds of chemo that put him in the hospital with seizures and delirium, he passed away from fluid on the lungs with the inability to breathe..... 9 mons after his diagnosis. He wanted to stay at home until the very end, but I just couldn’t cope anymore watching him suffer from the inability to breathe. When I took him to the hospital the last time for draining his lung, I told the nurses I was unable to do this anymore, I was totally spent and having chest pains. They put him in a private room and gave him morphine. His last words to me were, “I just want to go to sleep and never wake up!” He passed away 2 days later! He was my rock, and I wanted to be his rock....😔 I did what I could and I know he appreciated all the care and love I was able to give him.
I now have Stage 4 NSCLC, diagnosed a yr. and half ago. It started with a compression fracture in my back, and an X-ray of my lung to determine the diagnosis. I have had 2 more fractures on my spine and kyphoplasty to repair them. I have had several radiation treatments, pelvis, ribs, and spine. I had 2 rounds of chemo with different drugs. I reacted badly to both of them and my oncologist stopped them right away. He then tried Immune Therapy but that didn’t work either. During my last appointment with my Medical oncologist he suggested one more try with a very strong chemo drug...last ditch effort for sure...for a few more months, maybe!! There was no guarantee that I wouldn’t react to that one too! I wanted my last few months to be on my terms. I did not want to put my husband/caregiver through what I went through with my dad. I wanted my quality of life, what is left, to be as normal as possible! So I said, no more! Palliative care and Radiation when possible is what I chose. I have had another radiation treatment on my spine, which helped with some terrible pain issues in my arms. My lungs are now badly affected, some fluid, 100 smaller tumors and one large one. My cough is bad when up walking and talking and I have shortness of breath. My radiation oncologist said he would try radiation to the lung, but he is not sure where to radiate for the cough and breathing issues with so many lesions. He doesn’t want to put me through more pain in the throat, fatigue and side effects from steroids (another issue) I am on morphine, small dose prednisone to help with inflammation and pain. I am registered with Hospice and have a nurse coming once a week, or more if we need her. I will stay at home as long as I am able, and as long as i’m not putting too much strain and stress on my husband and family, then it’s Hospice care.
i read how so many of you are doing well with treatments for lung cancer and living a fairly normal life (and Westcoast running a marathon, you are amazing!) I am so happy for you all!!
You know, because of cancer and heart disease in my family, I did everything I could, exercise, eating healthy, socially active, the whole nine yds. to keep my body safe from those diseases! Well, breast cancer in 2013, lumpectomy and radiation, heart attack 2015, main artery totally blocked, stent, then the lung cancer diagnosis Mar/19! My oncologist called it “Bad Luck!l One is never safe, no matter what you do to try to prevent it!!
I wish there was something that worked for me, but I guess it’s just not in the stars! I just turned 70yrs.old and my husband and I just celebrated our 50th Anniversary! We have 2 children,a boy and a girl, and one 17yr.old grandson. We live on a quiet lake in Ont., have travelled the world, lived the life of a Snowbird the last 8 yrs., and we have a wonderful group of friends and supportive family. Unfortunately with Covid, we have not been able to see everybody as we normally would, but there is always the phone and FT! I thank whoever is out there watching over me, for the wonderful life I have had, and hope that my remaining time will be fairly calm and not too painful, of course there are drugs for that! I sometimes lay awake at night and say the same thing my dad did, “I just want to go to sleep and never wake up!” When you are not “You” any more, and unable to do the things in life that you used to do, and people are waiting on you hand and foot, it is just not right! I feel so helpless and useless, and I’m not accomplishing anything!! But I lay in bed, looking out over the lake, and at the birds at the feeder, my hanging geraniums, the woods, and listen to squirrels antagonizing our cat, I am thankful that I am still alive!
My love and best wishes to you all on Cancer Connections! Your stories and advice, your love and support to all patients and caregivers has been my morning reading for several months. I have learned from you, been amazed by you and cried for you, and now here is my story to you! ❤️
Posted by jorola on Aug 30, 2020 1:45 pm
Thank you so much for sharing your story. Your strength and beautiful outlook on your life and journey brought tears to my eyes. You are simply amazing. Sounds to me as you were the loving devoted daughter who then went on to live life on her terms to the best of her ability, no matter what came her way. You saw the joy and beauty of life and loved along the way. You are the embodiment of Life Laugh Love - the words I try to live by. I only hope I am half as fulfilled as you when I am your age. You are a true inspiration.
Posted by ashcon on Aug 30, 2020 5:16 pm
Bonnie, what a gentle and generous note you've shared with this community. What a balanced perspective you have on your reality, and your hope and joy of life. I especially love this:,
When you are not “You” any more, and unable to do the things in life that you used to do, and people are waiting on you hand and foot, it is just not right! I feel so helpless and useless, and I’m not accomplishing anything!! But I lay in bed, looking out over the lake, and at the birds at the feeder, my hanging geraniums, the woods, and listen to squirrels antagonizing our cat, I am thankful that I am still alive!
Thank you for sharing. WestCoastSailor may be training for a marathon, but you have really gone the distance and, I believe, inspired many others with your words.
Posted by WestCoastSailor on Aug 30, 2020 8:12 pm
Tears streaming down my face. That I might have your grace and strength when I get there. If you weren't alive you couldn't have shared these words with us. And that is not nothing. I know we have a lot of "lurkers" - people that read our words but choose not to write - and that is okay. Thanks for choosing to share your story with us. It helps others to understand the decisions we make about how we choose to spend the end of our lives.
Just to keep the record straight - it's only 5K not a marathon. (Though I did download the training program for 10K this morning...😉)
Posted by KatKat on Sep 13, 2020 9:54 pm
I am helping my Mom as she is presently getting radiation for pelvis/sacrial joint cancer.
From what she is telling me, she gets dull, throbbing pain. First of all, my mom (pre-cancer) could probably count on one hand how many Tylenol or other pain meds she has taken in her life. It has been a struggle explaining to her and convincing her to stay ahead of her pain...and not waiting until it is dictating her day. I really REALLY suggest using pain meds to control your pain, or it will end up controlling you. I have seen my mom weep and apologize for being very short and almost mean to me when her pain is too much. I can empathize completely, as I have had spinal surgery and fell into the same abyss! If the bottle says 'every 4-6 hours, I suggest taking that next dose at FIVE..no later. And carrying an extra little bottle with a dose in it, in case you are out and time runs away from you. This happened to use Friday and it makes for a crappy evening.
Mom also stated that her skin feels very hot, almost burning at times. Her face was flushed and quite warm on Thursday, but when she took her T3 meds, it calmed down almost completely. I will be asking her doctor tomorrow if she can apply ice to the area...?? If anyone has any suggestions for surface pain, it would be greatly appreciated!
Posted by Lianne_Moderator on Sep 16, 2020 7:10 pm
I just came across your post now. Thank you for sharing what a life well lived looks like. Your observations and appreciation for all the things around you was beautiful to read. I too watched my dad pass from cancer and your love and support for yours came shining through in your words.
I am so glad you decided to reach out and make your first post - and what a first post it was!
Holding you and your family in my thoughts
Posted by Cynthia Mac on Sep 17, 2020 9:35 am
I lost my Dad at the end of June, but not to his lung cancer, which had metastasized. And, my mother’s name was Bonnie. She passed away in 2017, just 2 weeks before their 59th anniversary (from heart failure). Mom and Dad’s home looks out over a larger lake in Ont., and they, too, fed the birds and squirrels in their back yard (as do I in mine). So, your story has hit very close to home.
Thank you for sharing your story, for you have given me leave to process more of the love and grief I have for them. May the grace that you possess and have shared here continue to be with you.
Posted by Kims1961 on Sep 17, 2020 10:29 am
I too, live in a small town in Ontario. Although not on a lake, close to a lake, where i often go with my dog for runs , paddles and snowshoes. I often pause at these moments, looking out at nature, in hopes that when it is my turn to leave this earth, I will recapture these visions. As you described taking care of your dad, this too, is a gift you are giving your family. It is an honour to be present with our loved ones during our remaining time here. Sure, it is not easy, but life was not meant to be easy, but rather being present for the love, for the sadness, for the memories. It sounds like you are living a life of love - if only all others could experience the same.
Your story will be one i remember. I didn't get a chance to meet you in person, but i met you in my heart. I am happy to hear you are getting meds to keep you comfortable and love to keep you embraced. Thank you, from me, you have shown me courage and inspiration. In peace, Kim
Posted by Elsie13 on Sep 17, 2020 10:21 pm
You spoke to the doctor Sept. 14th as planned? Did you get good information?
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