dmfan71 Posted January 16, 2019 Share Posted January 16, 2019 My dad has stage 4 nsclc with brain mets. He had surgery to remove 80% of brain tumor and radiation as well as chemo for the lung tumor. He just had a CT and MRI and the oncologist said the chemo isn't working and the cancer has spread to the lining of the brain with more small brain mets. He has suggested immunotherapy...which drug I don't know..the dr said its a grave situation and has given my dad 2 weeks to read up on immunotherapy and to decide if this is something he wants to do...he said without any further treatment he would have weeks to approx. 4 months (could be less or more) survival rate..not sure how much the survival rate increases with immunotherapy but he said having it spread to the lining of the brain isn't good. My dad will see the brain dr next week to see what his thoughts are. The oncologist did say that immunotherapy does have side effects that could end up hospitalizing him (ie diarrhea etc). Ultimately the decision to go ahead with immunotherapy will be up to my dad but I am just trying to see if this is worth it for him or not....thoughts? How bad are the side effects? I know it can affect everyone differently. Needless to say I am heartbroken for my dad and cannot even imagine what he is going through right now. thanks for any input. Link to comment Share on other sites More sharing options...
Steff Posted January 16, 2019 Share Posted January 16, 2019 Hi there, My mom was on immunotherapy for over 1 year. The side effects for her were mild for about 1 year. Now she is suffering from GI inflammation from having an overactive immune system for so long. But for the first year, most of the side effects were a rash (pretty common side effect), changes in skin pigmentation, thinning of hair lack of energy, and some mild inflammation in the lungs. Diarrhea did not start until the GI inflammation. My aunt was also on immunotherapy for 2 years for melanoma. Her only side effects were a slight rash, feeling sluggish, and hair thinning. Immunotherapy can do great things with few side effects. If it is an option, it may be a good one for your dad. I would, however, ask how effective the specific immunotherapy drug they are considering is in treating brain mets. Link to comment Share on other sites More sharing options...
LaurenH Posted January 18, 2019 Share Posted January 18, 2019 Hi, dmfan71, I'm glad that Steff already shared her experience and advice! You may also want to check out the Immunotherapy section of LUNGevity's website and download the Immunotherapy patient education booklet. It might answer some of your dad's questions and give him enough information that he feels empowered to make a decision. We're here for you both, so please continue to let us know how you and your dad are doing. And if you have any more questions, feel free to ask and we'll try to get you all of the information you need! With gratitude, Lauren -- Digital Community Manager Link to comment Share on other sites More sharing options...
Tashia Posted January 20, 2019 Share Posted January 20, 2019 On 1/16/2019 at 11:07 AM, dmfan71 said: My dad has stage 4 nsclc with brain mets. He had surgery to remove 80% of brain tumor and radiation as well as chemo for the lung tumor. He just had a CT and MRI and the oncologist said the chemo isn't working and the cancer has spread to the lining of the brain with more small brain mets. He has suggested immunotherapy...which drug I don't know..the dr said its a grave situation and has given my dad 2 weeks to read up on immunotherapy and to decide if this is something he wants to do...he said without any further treatment he would have weeks to approx. 4 months (could be less or more) survival rate..not sure how much the survival rate increases with immunotherapy but he said having it spread to the lining of the brain isn't good. My dad will see the brain dr next week to see what his thoughts are. The oncologist did say that immunotherapy does have side effects that could end up hospitalizing him (ie diarrhea etc). Ultimately the decision to go ahead with immunotherapy will be up to my dad but I am just trying to see if this is worth it for him or not....thoughts? How bad are the side effects? I know it can affect everyone differently. Needless to say I am heartbroken for my dad and cannot even imagine what he is going through right now. thanks for any input. I am so sorry to hear about your Dad. This whole Stage IV Cancer nightmare is fairly new to our family. My Uncle was diagnosed on October 23rd. Thankfully his brain scan was clear. It has spread however to other areas of his lungs and to his lower back. He had radiation first, and now doing Chemo and Keytruda. It is such a difficult place to be to watch those we love feel so sick. Thoughts and prayers for you and your Dad 🙏 Keep us posted when you can. Link to comment Share on other sites More sharing options...
Tom Galli Posted January 20, 2019 Share Posted January 20, 2019 dmfan, I'm also sorry to learn about your dad metastasis to the meninges (tissue surrounding the brain). This does in fact complicate treatment and your father faces difficult decisions ahead. Your dad's overall health and age will factor into a decision to continue with immunotherapy. Immunotherapy has proven to be a very effective treatment for advanced stage lung cancer. While side-effects are troubling, if it works, it works wonders. Are you in a position to accompany your father to his next oncology consultation? There will be a lot discussed during this session and a second set of ears to ensure understanding is helpful. His oncologist will not likely be able to project how effective immunotherapy is on your dad's cancer. He can and should give projections on the effectiveness for the type and stage of your dad's cancer when treated with immunotherapy. Additionally, he can cover how he will treat side-effects if they occur. I say if because, as you've said, immunotherapy drugs effect everyone differently and side-effects vary accordingly. To summarize, ensure your father's general medical health is considered in addition to immunotherapy effectiveness at his next consultation. We understand your heartbreak over your dad's condition, and wish we had a way of eliminating it. Stay the course. Tom Link to comment Share on other sites More sharing options...
dmfan71 Posted January 23, 2019 Author Share Posted January 23, 2019 Thank you for all your kind words and advice. I did go with my dad to the neuro oncologist today. He suggested whole brain radiation.. He said this is more serious than the lung right now so we need to control the brain mets. He will have 10 rounds of wbt over the next two weeks...hopefully he starts this Monday or next..we have to wait to hear when the appt is. He said lets see how that goes and then if he recovers well from the radiation then we can start immunotherapy if my dad chooses too. The doctor had said it will be Opdivo. So he will have 2 weeks of radiation and then the dr said recovery would be about 2-4 weeks then we can discuss immunotherapy with the other oncologist...It just seems like a lot of waiting to start immunotherapy. I feel more positive today than I have felt the last few days....The dr today kept stressing this isn't a cure, we are only looking at quality of life and being comfortable...we are talking he could have more months but not years...maybe that was just for the brain mets..and not the immunotherapy. From what I have read, immunotherapy is not a cure, but it can extend your life and give a good quality of life, for how long, I don't know...I'm guessing everyone is different and maybe its different because my dad has brain mets. All I know is I am glad my dad is doing this and this way he can say he tried and what will be will be. Maybe we can get a another year, who knows. I am just taking it day by day right now. Again, thank you for your replies :-) Link to comment Share on other sites More sharing options...
06211219 Posted February 4, 2019 Share Posted February 4, 2019 I’m so sorry to hear about your dad. My husband has SCLC with brain Mets - he did 5 cycles of chemo and also had WBRT. He is now on Tecentriq immunotherapy. His doctor said it could possibly add 2 months. He hasn’t had any side effects from it, just side effects from having advance stage cancer. once it spreads to the brain, unless it is one tumor that can be removed surgically, I’m not sure there is a whole lot that can be done, besides add a little time. I know people on here disagree, but I’m only going on what all of my husbands doctors have said, and from the research I have done. I do hope it works for your dad, and you get as much time as possible. Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 4, 2019 Share Posted February 4, 2019 dmfan71 I am on Immunotherapy and very glad, I was given the option knowing full well it is not a cure but if it stops my progression as it seems to be be doing for me right now. Que sera sera. Bob Link to comment Share on other sites More sharing options...
Mally Posted February 6, 2019 Share Posted February 6, 2019 I've been on opdivo for a year now and apart from an itchy rash I feel good and had scan results today and the lymph nodes cant be seen and no new growth anywhere so it can work very well and it's been an easy treatment so far and compared to chemo it's a dream ...I wish you and your dad the best of luck and hope opdivo does good for him.. Link to comment Share on other sites More sharing options...
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