I am not exactly sure how this site works. I want to introduce myself and possibly get feedback on anyone who is in a similar situation. I have anxiety/depression but I also have stage 4 non small cell lung cancer. I just had my 2nd treatment of chemotherapy and immunotherapy. A friend of mine told me about this group and said she seen someone had posted about lung cancer and is on the same chemo route as me. I am on Alimta, Carboplatin and Keytruda. I will get my first ct scan to see if it's working on September 30th. If you know who this person is, maybe you can tell them to contact me. Or if anyone else is interested in talking, please let me know. Good luck to you all and thank you.
Sandy B.
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sandyk1107
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Welcome, Sandy. You will likely find more than “one person” on that regimen here since that is standard of care first line therapy. I am not one of them, though...I was diagnosed stage IV nsclc in April 2015 when the first line treatment was different. I started with chemo only of carboplatin plus alimta. After 8 treatments of that (most people have fewer), I dropped the carboplatin and received alimta every 3 weeks for more than 4 years. In fall 2019, I had progresssion in my lung and switched to a doublet immunotherapy of Opdivo plus Yervoy. Now I continue monthly with Opdivo. It is a very similar drug to Keytruda manufactured by a different corporation. If your treatment plan ever drops the carboplatin, I hope you will find the side effects much more easily managed. Best wishes for your CT scan September 30. (My daughter’s 16th birthday!). Also, make sure they did a complete pet scan at diagnosis and are monitoring your brain To watch out for cancer spread. Some of my most difficult challenges have resulted from metastasis to the brain rather than the systemic treatments of the lung cancer.
Welcome to the lung cancer board. It’s the weekend so it may take a bit to connect with someone who is on the same treatment.
By now you are probably noticing a pattern of good and bad days around your treatment. It helps that they are predictable.
Jenniferroseolson mentioned you you that what you are on is standard of care. It’s standard of care because more people survived on it with longer progression free survival.
Anxiety and depression are normal reactions to this diagnosis. I found that meditation helps me when I’m anxious. There are free meditation apps on line.
I’m the meanwhile, if you would like to be matched with a mentor/phone buddy who has had the same treatment you can get one here: go2foundation.org/resources...
Hi Sandy, I'm not sure how this site works either. I am so sorry you are have anxiety/depression. Can you get out an walk or swim or some activity to clear your thinking. I am a Christian and pray when I start getting worried or anxious. Are you having any side affects from the drugs. Also, you could get a phone buddy from go2foundation.org that has really helped me.
I too believe in prayer and I pray all the time and feel this is what has gotten me through. I have had 2 treatments so far and both times have ended up in bed the 3rd day after treatment. I get so sick that I cannot eat and make myself drink what I can. I am not sure which one is making me so sick and if it is working ( I find out on 9/30 when I get my ct scan and see the Dr) if the treatments are working. IF they are, then I will suffer before being taken off even as sick as it makes me. It's certainly unlike anything I have ever felt in my life. I have always had a bad stomach though. I would appreciate any input from anyone else that has been this sick and what they have that works or helps. I wish you luck and hope we can talk more. I am here if you need me. I go to Moffitt in Tampa.
Hi Sandy. I was diagnosed with NSCLC stage iv adenocarcinoma, high pdl-1, in January 2019. I was on Keytruda only for about 1.5 years with 50-65% reduction in tumor size until about 3 months ago. At that time I had to start Alimta and discontinue Keytruda because I had 1 pesky tumor that increased in size. As of last scan, I am stable. Feel free to message me if you want to chat.
My sister is recently diagnosed with stage 4 lung cancer . Her age is just 30 . She is non smoker . But we are surprised how she get this ?we are searching for good treatment as soon as possible . Please any good suggestions ? Can we talk in private ?
Okay ... there is much better treatment than here ... that’s the main problem for us that our patient can’t get good treatment . But I am praying for her .
Hey Sandy, how are you doing? We are on the same treatment plan. I'm not really sure how this site works either but I have been thinking of you and wondering how you are doing. Please reach out to me anytime. I have my 3rd treatment tomorrow, how about you. Please stay in touch and if you need to talk I am available also. Hope your anxiety and depression are easing up a bit.
Hi, So we are on the same treatments? Today I go get my port in, as a matter of fact leaving in a few minutes to head there. The chemo makes me bad sick, in bed sick. Last time I was so sick I lost 12 pounds. I could not eat a bite, even jello was terrible. I think from what I've heard from others that it could be the Carboplatin but I don't want anything taken away if it's helping me. I would love to talk more with you. I will be going on September 30th for my labs, ct scan and 3rd chemo treatments. I will let you know more then. Reach out to me please as I really would love to talk more. Hope you have a good day! Sandy B.
Hope your treatment is a little easier on you today. Sorry you are having such a rough time. I have been juicing carrots. I have heard of a lot of people that believe in juicing. I'm not saying it's a cure but it puts good vitamins in by body. Also, I eat a rainbow diet. But maybe smoothies would put some weight back on you. I will pray for you today. God Bless you. Hang in there. You have touched my heart.
Hi Sandy. Like you, this is my first post. I was diagnosed with Stage 4 NSCLC in March of 2019. I was at low risk for lung cancer so by the time it was diagnosed, it had metastasized to the bone. I started treatment of Carboplatin, Keytruda and Alimta in April of 2019 every 21 days. I had four rounds of these three, then the Carboplatin was dropped. Since then, I have been on Keytruda and Alimta with the same 21 day schedule. Based on my experience, and there's quite a lot I don't know, the Carboplatin was the worst one but had the best results. I am blessed that my side effects have been minimal and nothing permanent. Even with the Carboplatin, fatigue was the main side effect. There were days that I didn't even have the energy to shower so I just napped a lot. But my scans showed the lung tumor had decreased to half its' size and most of the bone cancer was gone while on the Carbo. My fatigue has gotten better. My scans for the last few months have been stable with my next scan in mid October. My Oncologist wants to continue the Keytruda as long as it keeps working and my body tolerates it as well as it has. I'm sorry that you've been so sick. Early on, I had difficulty sleeping and also didn't have an appetite. I was prescribed an anti-depressant to take at bedtime to help me relax. It also helped with my appetite. The good Lord has gotten me this far. Stay strong! You're in my prayers.
My sister is recently diagnosed with stage 4 lung cancer . Her age is just 30 . She is non smoker . But we are surprised how she get this ?we are searching for good treatment as soon as possible . Please any good suggestions ?
Hi Sandy, just wanted to give you some encouragement. I was diagnosed with stage 4 non small cell adenocarcinoma in 2013. I was also a non-smoker.
My mutation was ALK and I had carboplatin and Alimta initially. I went off both for a year during which I took targeted drugs Xalkori (7months) and Zykadia (5 months) instead. When they caused more serious side effects, I went back to Alimta alone every three weeks until 2016. It is used as a maintenance drug. After side effects became too much, I finally stopped taking it. Fortunately, my scans were clear when I stopped. I have had no evidence of cancer since 2016. So my words to you are stage 4 can be surviveable. It is important to have an understanding relationship with your oncologist as you work out a plan together. Don’t be shy with your questions. Let your doctor know if you are experiencing side effects since there are medicines to help or Possibly other options. Faith, hope, and humor played a big part in my having a survivor attitude.
Glad you connected here. A great group with experience and helpful information!
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