Cari Posted October 15, 2019 Posted October 15, 2019 Hello, New to the group. My dad was just diagnosed with NSCLC adenocarcinoma Stage 2B. He had a left upper lobectomy and once healed from that he will be starting chemo. I am scared about side effects and curious to see if anyone else has been on Cisplatin/Navalbine combination and how they did with it?
LouT Posted October 15, 2019 Posted October 15, 2019 Cari, So sorry to hear about your dad. My NSCLC Squamos was treated with surgery only, but many others here have had chemo and will provide excellent information from their experiences. For my part I wanted to welcome you, tell you that there are many here who have had LC and are still going strong after treatment and to warn you to please stay away from Google. Online LC stats are based on multi-year running averages rather than based on the latest stats for recurrence and survival. Just listen to your dad's medical team and learn all you can here at Lungevity. There are posts on LC overviews, treatments and survivals. Also take a little time to read some of the responses other new posters have received in this forum (INTRODUCE YOURSELF!) and you may hear information important to you as well. I wish you and your dad all the best and welcome again to the group. Lou Torres
LUNGevityKristin Posted October 15, 2019 Posted October 15, 2019 Hi Cari, I'm sorry about your dad's diagnosis but this group is wonderful and very supportive. Here is the link to Lung Cancer 101 https://lungevity.org/for-patients-caregivers/lung-cancer-101 it is a great resource for all of the "what happens next?" questions. It seems like everyone handles treatment differently and the side effects can really vary from person to person. If you need any help with nutrition, Ina can answer questions via text 24/7. https://lungevity.org/for-patients-caregivers/support-services/meet-ina-your-personal-intelligent-nutrition-assistant LUNGevity also has support for caregivers and patients through the LifeLine peer mentoring program. https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lungevity-lifeline Keeping you and your dad in my thoughts. Please keep us updated on how he's doing.
Cari Posted October 15, 2019 Author Posted October 15, 2019 2 hours ago, LouT said: Cari, So sorry to hear about your dad. My NSCLC Squamos was treated with surgery only, but many others here have had chemo and will provide excellent information from their experiences. For my part I wanted to welcome you, tell you that there are many here who have had LC and are still going strong after treatment and to warn you to please stay away from Google. Online LC stats are based on multi-year running averages rather than based on the latest stats for recurrence and survival. Just listen to your dad's medical team and learn all you can here at Lungevity. There are posts on LC overviews, treatments and survivals. Also take a little time to read some of the responses other new posters have received in this forum (INTRODUCE YOURSELF!) and you may hear information important to you as well. I wish you and your dad all the best and welcome again to the group. Lou Torres Thank you so much for your kind words. Yes, reading Google survival rates have been alarming! He had the lobe that contained the nodule removed and 15 lymph nodes too. Only one contained cancer cells. I’m definitely hoping after chemo he has more than 2 years left according to Google. I will keep reading everyone’s stories. Thanks again. Cari
Louise B Posted October 16, 2019 Posted October 16, 2019 Hi Cari, I’m so sorry you have to be here, but you will find wonderful support and guidance. My husband had a similar diagnosis (in March 2018, aged 64). NSCLC adenocarcinoma, initially staged as likely Ib/II, but after 2 right lobes were removed by robotic surgery it was ‘upped’ to a IIIa, so like your Dad it was followed by a course of adjuvant chemo. He was given Cisplatin & Alimta. While the mix is not quite the same as your Dad, it’s worth telling you that my husband tolerated the chemo surprisingly well. We were warned of various side effects, what to look for, and how to cope with each, and I’m so glad we were armed with all that information, no matter how scary at the time, but everyone is different and it’s entirely likely your Dad can go through it all as smoothly as we did. My husband had absolutely no issues with his bloodwork, so the infusion schedule ran like clockwork. He experienced no mouth sores or many of the other possible side effects, but he did constantly gargle/rinse with a salt water solution that was recommended. I don’t know if that avoided sores or whether he simply was not susceptible, but I would recommend it as a safeguard. The only significant effect we had to deal with was the nausea and tiredness which gradually increased as the sessions continued. The challenge was to find something that he could and would eat to keep up his strength. I researched this very early on so that we had various options when eating later became more of an issue. We found liquids or very sloppy foods were best. He couldn’t cope with anything he had to chew much. I read a lot of sites to get ideas that packed in as much nutrition as possible, but then it just comes down to personal choice. I tried different kinds of smoothies. I mixed many recipes at home for him, with little success, but found a mango smoothie (Bolthouse) with a very high protein content that he very much enjoyed, so stocked up on that and other high protein shakes as backups when he wouldn’t eat ordinary food (I think Ensure was another that he sometimes tolerated) and got one down him whenever I could!...I had to remind (gently nag!!) him to eat/drink something often, otherwise he would simply not have done so! I also cooked up a very sloppy mix of ground beef and loads of different vegetables - I know, it sounds less than yummy, and he hasn’t wanted to touch it since, but it had lots of goodness in it and he woofed it down at the time! Like I said, everyone’s experience and journey is different, but there are many like my old man who have had the same scary diagnosis, gone through the surgery and chemo very smoothly, and for whom life is back to normal with each follow-up scan being 100% clear! 👍 I wish your Dad a very speedy and smooth road to recovery too! Do please let us know how he goes on. You have amazing people on this site with a wealth of experience and knowledge. They helped me every step of my journey, especially during the most scary surgical time, and I am so grateful! Best wishes, Louise
Cari Posted October 17, 2019 Author Posted October 17, 2019 Louise, Thank you so much for you kindness and advice. Cari
Susan Cornett Posted October 17, 2019 Posted October 17, 2019 Cari, I suggest you check out chemocare.com. It is a site run, in part, by The Cleveland Clinic. It has great information on the chemo drugs - what to expect, how to deal with side effects. We all tolerate chemo differently so keep that in mind.
BridgetO Posted October 17, 2019 Posted October 17, 2019 Hi Cari and welcome. You've had some great advice and info from others here, so I don't have much to add, since I haven't experienced the kind of chemo your dad will be having. I have had chemo for a prior non-lung cancer, cisplatin along with radiation, and then carboplatin and taxoterre. Be sure your dad knows that any fever during chemo should be treated as an emergency. Many chemo drugs cause depletion of neutrophils, a kind of white blood cell that fights off infection. If neutrophils get too low, the body can get overwhelmed with infection in a matter of hours. I had this twice during my chemo-- once my neutrophils were zero. A late night call to the doc about fever sent me to the ER where after tests, I was put on antibiotics and recovered with no ill effects. After subsequent infusions I had injections of neupogen, a drug that helps to prevent this neutrophil crash. Best wishes to your father and to you- support by family is really important. Bridget O
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