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  1. I don’t know if I am posting this in the right place, but I am hoping someone can help. My dad was diagnosed with Stage IV adenocarcinoma with bone mets about a month ago. It spread to the C2/C3 area of his neck and he completed 10 rounds of radiation. I asked for SBRT but they said they needed to go wider than that therapy could provide. He had his first round of chemo (carboplatin/alitma) and keytruda two days before finishing up radiation. He is absolutely suffering from the radiation. His throat is so bad he will not eat or drink, he is depressed, and saying that he isn’t doing any more treatment. He also developed thrush and mouth sores from the chemo. He is on painkillers (oxy) with no relief. He has had to go in to get fluids via IV. It has been 8 days since he completed radiation and there is no improvement. Does anyone have any words of advice, help, ideas, suggestions? He also has COPD. Thank you!!!
  2. Thank you so much for the mentor program information. I have passed along the information to my parents and I think once my dad becomes more settled with everything they are going to look to the site for support. He has his first radiation treatment today and his first chemotherapy infusion on Wednesday. I know he is super nervous about side effects. This has been just so hard, but I am hoping once the anticipation of it all is behind us, we will settle into a routine of treatment. I guess that brings me to another question. Do the side effects stay the same throughout the course of treatment or do they intensify with time? I am sure it varies from person to person, but any information anyone can provide would be greatly appreciated. Thank you so much! Sheri
  3. Steff, Thank you so much for your response. It is tremendously helpful as I think my dad will be on a similar regimen. I will also look into the books you mentioned and I will talk to my dad about joining the forum. I really think our biggest struggle is going to be his mindset. I greatly appreciate the help. Sheri
  4. Stuff, Thank you so much for your reply. It is great to hear that your mom did well with immunotherapy despite the RA. They are planning on Keytruda, chemotherapy, and radiation. He will start chemotherapy next week and he has his first appointment with the radiation oncologist this week. My dad has been so depressed and I am so worried that the side effects from chemo will get the best of him. Did your mom have bad side effects? I realize it is different for everyone, but I am praying that it is manageable for my dad. I was also wondering if anyone has any recommendations for any good books or references to keep my dad motivated to fight? I greatly appreciate this forum so much!! Thank you! Sheri
  5. Thank you everyone for the responses and especially the guidance!! Your experiences are so important! We found out this morning that his brain MRI came back completely clear!! We are so happy and I can't tell you how good it feels not to be punched in the face today with bad news. We are currently in the process of setting up a radiation oncology appointment and I am hopeful that SBRT will be an option. My dad's RA doctor also cleared him for immunotherapy so that was another small victory. I am learning that these little "wins" mean so very much. I did have one question about the combination of radiation and chemo. I assume they do chemo first and then radiation? I know historically they didn't do both at the same time. Has that changed with SBRT as an option? I am still waiting to hear back about the biomarker/genetic testing and this is at the top of my list of things to pursue and get going. I have heard so many good things about targeted therapy and I am praying that that will also be an option. Thank you again so much, and if anyone has any other suggestions or advice, I am so happy to hear it! Tom: The dogwoods and cherry blossoms have been beautiful this year! Sheri
  6. Thank you so much for the replies. I already feel better than I did just 3 days ago after finding this group. Your experience and guidance means the world to me. Tom Galli—congratulations on your strength, perseverance, and willingness to continue to help others. You are truly an inspiration. Experience counts for a whole lot more than science. I will definitely inquire about the SBRT. The first tumor was removed and determined to be adenocarcinoma but they didn’t do any additional testing. That was in April 2019. The surgeon was positive he “got it all” and told my parents they didn’t need an oncologist. Here we are one year later with Stage IV recurrent adenocarcinoma. The most recent tumor and lymph nodes were already biopsied to confirm adenocarcinoma, but I am assuming they will have to maybe do a second for genetic testing? I called today to follow up with that but haven’t heard back. I have a feeling the oncologist is going to get sick of me. I am praying for a clear brain scan and will keep you posted. Thank you so much! Sheri
  7. Hello! My dad was just diagnosed on Friday with Stage IV adenocarcinoma of the lung. He had a very early stage adenocarcinoma lesion removed a year ago so this is quite a shock. A recent PET scan shows metastasis to the bone in approximately 3 places (hip, rib, neck) but those lesions are small at 1 cm or less. He is having an MRI today to see if it has spread to his brain and will have his port surgery on Friday. I am also following up about genetic testing today. He was a smoker so the chance of a genetic mutation is likely low. I am a scientist so I am my dad’s (and my family’s) advocate and spend a lot of my time digging through the literature looking for the latest and greatest treatments and clinical trials. I know historically this diagnosis has been associated with a poor prognosis, but from what I can see, it thankfully seems to have changed with survival rates on the rise. I was wondering if anyone has had a similar diagnosis and what your experience was or any words of advice for us as we embark on this journey? Thank you so much for your help and support. Sheri
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