Terri L Posted July 6, 2019 Share Posted July 6, 2019 Hope I am doing this right. Have Stage IVb. Starting immunotherapy with chemo on Monday morning. No radiation. I have been perusing the boards and find some comfort in your posts so I have joined. Thank you for having me. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 6, 2019 Share Posted July 6, 2019 Hello Terri- Welcome to “the family” where we cry, laugh, and most importantly live each day together. Lung cancer is so sneaky, 90% of us were diagnosed at Stage IV. The most important thing right now is not to use Dr Google- it’s just terrible in capturing an accurate picture since there have been more treatment advances in the last 5 years, than in the last 50. The science is advancing so quickly, the internet can’t keep up. Let us know how we support you through this process. Got questions-ask away- nothing is too trivial here. Glad you found us, Michelle Link to comment Share on other sites More sharing options...
Roz Posted July 7, 2019 Share Posted July 7, 2019 Terri, Which immunotherapy did they start you on? You said you were diagnosed with Stage IV, but do you know what type of caner it is? Hope the treatments do the trick for you!! Let us know if you have questions! Best, Ro Link to comment Share on other sites More sharing options...
Terri L Posted July 7, 2019 Author Share Posted July 7, 2019 Hi Roz, Tomorrow morning is my first infusion. It's Pembrolizumab, Pemetrexed, Carboplatin . 4 rounds every 21 days. Kind of scared of what the side affects will be. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 7, 2019 Share Posted July 7, 2019 Hi Terri- That’s referred to as “the triplet” which is the standard of care. I had one infusion prior to starting my targeted therapy (pills). For me the side effects were very manageable, take the anti nausea meds (there are two kinds a short acting and a long acting). The tough part is the sleepless night from the steroids which goes away in a few days. Keep track of anything new and inform the doctor of any symptoms, you are not complaining, no symptom is trivial. Did you get the port yet? I hope it goes well for you! Michelle Link to comment Share on other sites More sharing options...
Terri L Posted July 7, 2019 Author Share Posted July 7, 2019 Thank you Michelle. No port. I must have great veins? And yes, I think the side effects are scaring me worse than the infusion. Will let you know. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 7, 2019 Share Posted July 7, 2019 You are definitely going to want to have a port. It will save a lot of time (and your veins). Will be thinking about you.... Link to comment Share on other sites More sharing options...
Momofevan Posted July 8, 2019 Share Posted July 8, 2019 Unless your port gave you a blood clot like mine did. Link to comment Share on other sites More sharing options...
Roz Posted July 8, 2019 Share Posted July 8, 2019 Terri, Best of luck as you start your treatment. Depending on how many infusions you will need it is up to you and your doc about a port. You could ask about taking something to help your anxiety prior to infusions (like Lorazepam, etc.). Everyone responds differently so just keep track of any side effects you experience and they will prescribe you drugs to counteract them. Best, Ro Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 8, 2019 Share Posted July 8, 2019 Lock and load today Terri! Link to comment Share on other sites More sharing options...
Susan Cornett Posted July 9, 2019 Share Posted July 9, 2019 Hi, Terri. Check out www.chemocare.com. It is a great resource for chemo drugs and side effects. I didn't have a port with my first chemo cycle and it was awful. When I had my recurrence, I requested a port and it made all the difference. Now I'm preparing to have it removed. 😁 Link to comment Share on other sites More sharing options...
Susanrae Posted July 9, 2019 Share Posted July 9, 2019 Thinking of you Terri. Hang in there! Susan Rae Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 9, 2019 Share Posted July 9, 2019 How are you feeling today Terri? Link to comment Share on other sites More sharing options...
Terri L Posted July 9, 2019 Author Share Posted July 9, 2019 THANK YOU! everyone for jumping on here to wish me luck. I was getting all your notes but couldn't get my phone to respond to them at the time. So, the infusion went perfectly smooth. You would have to look twice to be able to tell where it went in. No pain at all! So far anyway. I guess we shall see in 21 days. Now waiting for my side effects. Link to comment Share on other sites More sharing options...
Steff Posted July 10, 2019 Share Posted July 10, 2019 Terri, Glad to hear that your first infusion went well. My mom was on the same triplet and had great results from the treatment and has no evidence of disease for about 1 year now. I know that everyone suggests a port - my mom did not have one and although there were a couple of times where they struggled to find a good vein, she did fine. The nice thing is that at any time, you can ask for a port should the needle sticks become too much. As far as side effects goes, immunotherapies often do not have major side effects, at least in the beginning. My mom had a very itchy rash, some skin pigment changes that resolved itself in about 6 months, some hair thinning, and lack of energy. As for chemo, she had the typical flu-like symptoms for about 10 days. Luckily, she only had 6 infusions of the triplet and then went on to Keytruda only. If you want to check out her journey you can do so here. I hope you find these forums as valuable as I have. Take Care, Steff Link to comment Share on other sites More sharing options...
Terri L Posted July 11, 2019 Author Share Posted July 11, 2019 22 hours ago, Steff said: Terri, Glad to hear that your first infusion went well. My mom was on the same triplet and had great results from the treatment and has no evidence of disease for about 1 year now. I know that everyone suggests a port - my mom did not have one and although there were a couple of times where they struggled to find a good vein, she did fine. The nice thing is that at any time, you can ask for a port should the needle sticks become too much. As far as side effects goes, immunotherapies often do not have major side effects, at least in the beginning. My mom had a very itchy rash, some skin pigment changes that resolved itself in about 6 months, some hair thinning, and lack of energy. As for chemo, she had the typical flu-like symptoms for about 10 days. Luckily, she only had 6 infusions of the triplet and then went on to Keytruda only. If you want to check out her journey you can do so here. I hope you find these forums as valuable as I have. Take Care, Steff Thank you Steff. I read your mom's journey, and it sounds like thinks are going so well for her. Hoping my side effects just keep to themselves. Still nothing (maybe slight constipation) so keeping my fingers crossed. And yes, I love this forum. Still learning how to use it properly so trying the quote this time around so hopefully you get this answer. I have a sister that has driven 3 hours to my house to attend appointments with my husband and myself. This other siblings have offered to also, but this one steps in and just takes over for a couple of days and then drives home. Very blessed to have her for that. I told her about how you are doing the same for your mom and how you are Buffett fans. We recently took an early retirement and was about to visit his new properties to see if we wanted to invest as they sound so fun. Well, that's out now I guess. Thanks for sharing! Link to comment Share on other sites More sharing options...
Major Tom Posted July 11, 2019 Share Posted July 11, 2019 Immunotherapy and Lung cancer My wife Deb was diagnose lung cancer 3B one year ago the local doctors Xray, labs, mir then a sample taken from a llymph node all the usual it took 3 visits with our oncologist to pique out he planed to do nothing as he said said this far along its not worth fighting it and his words "standard of care". We went only 50 miles away to Moffit Hospital Tampa, Florida Radiation then Chemotherapy followed by immunotherapy this was their version of standard of care. and they started in one week from are first visit. Debbie's had 1 week that she was exulted and thats it. other then that one week she does everything she ever did better yet, cough went away. Cancer has balled up into a round tumor shrunk in half and her immune system has incased it and is less dense with every Image. God bless you and give you strength Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 11, 2019 Share Posted July 11, 2019 Wonderful experience as to how persistence pays off! Thank God for those NCIs, membership has its privileges. Thanks for sharing. Link to comment Share on other sites More sharing options...
Terri L Posted July 11, 2019 Author Share Posted July 11, 2019 17 minutes ago, Major Tom said: Immunotherapy and Lung cancer My wife Deb was diagnose lung cancer 3B one year ago the local doctors Xray, labs, mir then a sample taken from a llymph node all the usual it took 3 visits with our oncologist to pique out he planed to do nothing as he said said this far along its not worth fighting it and his words "standard of care". We went only 50 miles away to Moffit Hospital Tampa, Florida Radiation then Chemotherapy followed by immunotherapy this was their version of standard of care. and they started in one week from are first visit. Debbie's had 1 week that she was exulted and thats it. other then that one week she does everything she ever did better yet, cough went away. Cancer has balled up into a round tumor shrunk in half and her immune system has incased it and is less dense with every Image. God bless you and give you strength Oh wow. That must have been so scary. The standard of care is changing weekly, daily, hourly. Mine is supposed to be slow growing but once it gets in the lymph nodes decisions change I guess and that is where I am -- at the moment. We will know in about a month. Keep fighting and listen to Michelle above. Persistence pays off! Link to comment Share on other sites More sharing options...
Major Tom Posted July 11, 2019 Share Posted July 11, 2019 On 7/9/2019 at 10:24 AM, Terri L said: THANK YOU! everyone for jumping on here to wish me luck. I was getting all your notes but couldn't get my phone to respond to them at the time. So, the infusion went perfectly smooth. You would have to look twice to be able to tell where it went in. No pain at all! So far anyway. I guess we shall see in 21 days. Now waiting for my side effects. You just may, have any side effects 60% chance of rain means 40% beautiful sunny day Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 11, 2019 Share Posted July 11, 2019 My motto: patience, persistence and perseverance. Keep moving in the only direction we can: forward. Now is the time to say an easy goodbye to any toxic stress. Your full time job is to get well again. Link to comment Share on other sites More sharing options...
Major Tom Posted July 11, 2019 Share Posted July 11, 2019 12 minutes ago, Terri L said: Oh wow. That must have been so scary. The standard of care is changing weekly, daily, hourly. Mine is supposed to be slow growing but once it gets in the lymph nodes decisions change I guess and that is where I am -- at the moment. We will know in about a month. Keep fighting and listen to Michelle above. Persistence pays off! It was horrible just horrible but now every trip to the hosptel is a bit of a joy Link to comment Share on other sites More sharing options...
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