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Everything posted by Susanrae

  1. Susanrae


    Hi Deb, I will be saying extra prayers for a good scan for you. The anticipation of the scan and waiting for results is SOOOO hard. You take care now, Susan
  2. SamGirl50, We are happy you found our group but sad because you have to be here, as said previously. I was diagnosed April 2019 with stage IV NSCLC, adenocarcinoma with brain mets. The hardest thing for me was to accept having cancer and being able to "wrap my arms around it and learn to live with it." During the first few months there were a lot of tears and fears but after that, along with the support of this marvelous group, I have been able to live a pretty good life with a cancer diagnosis. Allow yourself the tears, anger, etc whatever you need to do to be able to accept this disease as part of your normal life now. It is not easy, but you can do it and feel free to vent anytime, we all have at one time or another! As Lou stated, stay strong and keep us posted. You take care now, Susan
  3. Susanrae

    No more chemo!

    Great News!!! Very happy for you!šŸ˜
  4. Very happy for you! Thanks for sharing and giving us all hope!
  5. Hi Molly, Welcome to our group! This is a great bunch to be involved with to get you through the labyrinth of emotions, etc, etc, of a lung cancer diagnosis. I am Stage IV NSCLC of the adenocarcinoma variety with brain mets, diagnosed April 2019. It took me some time to "wrap my arms around" my lung cancer diagnosis and learn to live with it; so make sure to give yourself all the time you need to go through the various phases (crying, anger, etc, etc, etc). Grant yourself the grace. This group has been a godsend for me. They DO know how you feel because usually someone out there has experienced or can totally empathize with how and what you are feeling. I don't post or log in real often but truly appreciate those that do and all of the wisdom and support they offer. For myself, there are times, especially when medical appointments aren't on my calendar for 2 to 3 weeks, I don't log in much. I think it is a way for me to have a little "escape" from the cancer world; when I have a lot of appointments it seems to mentally drag me down. I have been very fortunate to feel quite well, except for some fatigue, since my cancer diagnosis. This group also has vast medical knowledge to help you navigate the choices for care you might encounter or how to ease some physical side effects and at no charge! You will find great support here and we welcome you! Take care, Susan
  6. Susanrae

    Side effects

    Hi Tom and Jennedy, I hopped on this site tonight but have not been around since June 2020 which is when my 3 weeks of radiation happened. A few times I suffered from the "block" you described Tom, and I was given an Rx for Lidocaine Viscous HCL 2% which worked. It numbed my throat temporarily so I couldn't feel the block and could eat. The trick is not to get any of this liquid on your tongue so that does not go numb too!! Hope this works for you! Hang in there and take care, Susan
  7. Hi Lisa, Good to hear from you! I am stage IV adenocarcinoma with right lung involvement and a true Minnesotan. Good luck to you on your scans! Take care now, Susan
  8. Susanrae


    Hi Lin, I hope you start feeling better soon. I had my 3rd maintenance treatment of Alimta last Friday and have been experiencing chest pain and fatigue, hope it passes soon. Will keep my fingers crossed and say a few prayers for positive scans for you. Mine are coming up in a few weeks too. Take care now. Susan
  9. Michelle, Thanks for your invaluable input; it is always nice to know one isn't alone. I will definitely start thinking differently about energy use and what is really necessary and what is not. Today was my last day to sign up for the trip to New Orleans and I took the plunge and am going!! Really looking forward to it! You take care now. Thanks again for all of your tips and understanding, Susan Rae
  10. Or, considering the big scheme of things, am I just whining about nothing?
  11. Good morning, I haven't posted for awhile. On 11/13/19 for my stage IV NSCLC (diagnosed 4/2019) I started the combo of pemetrexed and carboplatin and had 4 cycles of it every 3 weeks. During this time I experienced fatigue the first 5 to 7 days (napping in the afternoons for 1 to 3 hours). To make a long story short after this was completed, I had a CT scan and my oncologist said that overall my lungs looked better. As of February 7, my oncologist switched me to pemetrexed maintenance only. Since then I have been napping every day for 1 to 3 hours. I do exercise regularly (walking 30 to 45 minutes 3 times a week, take Tai Chi Chih class Tuesdays for 1.5 hours, ride exercise bike twice a week for 30 minutes), keep up with shopping, housekeeping, cooking, etc. So do feel i am fairly active; but, I just can't stay awake during the day!! At night I sleep well from 10 pm to 7 am. Other than this fatigue, I am asymptomatic for which I am very thankful. I wanted to take a bus trip to New Orleans mid-March but don't feel I should go due to my fatigue; there are many tours planned in the afternoons. Also, the coronavirus is getting to be a concern. Has anyone else experienced this much fatigue with pemetrexed? Thanks for listening,
  12. Very happy for you! Quite a milestone! Thank you so much for your words of encouragement and sound advice for all of us here; it means so much. Susan Rae
  13. My prayers and good vibes are going your way also!! Susan Rae
  14. Hey Lisa, Actually it was gamma knife not cyber knife. Sorry about the confusion. Take care now. Susan Rae
  15. Yes I actually had surgery too to cut the tumor out. I also had cyberknife to "zap" any remaining tumor with radiation in any of the margins.
  16. Hi Lisa Loves Marty, I had cyberknife for brain mets in April 2019 and have had clear MRIs since (every 3 months). After surgery, make sure to take painkillers as scheduled and stay AHEAD of the pain. I slept ALOT after surgery, went to bed at 9 pm and slept until 7:30 am with 3 to 4 hour naps daily for about 6 weeks. Take care now. Susan Rae
  17. Welcome Rose! Good to hear from you. You will find this site invaluable for support with lung cancer. I was diagnosed April 2019 with stage 4 NSCLC with brain mets. Last year I had treatment with Keytruda every 3 weeks, with some tumor shrinkage, until November 2019 but then the tumor started growing. In November 2019, I started chemotherapy and this Friday I receive what might be my last course (which would be a total of 4) of carboplatin and Pemetrexed. We will see what my Tempus results have to say along with the CT scan. I have been quite fortunate because I have not have many side effects from treatment other than fatigue. All the best. You take care now. Susan Rae
  18. Hi Bev V, I am from Minnesota also, close to Rochester. You have found a good place to relay your concerns, thoughts, and anything else. There are a lot of good people on this site to help you navigate the storm of lung cancer. It is a hard pill to swallow, but this the people on this site are a God send and make it easier to handle. Sending good vibes, positive thoughts and many prayers your way for your lobectomy. Take care now. Susan Rae
  19. Dear G.A.M. Sending positive thoughts and vibes your way for your appointment tomorrow. Our thoughts and prayers are with you. Susan Rae
  20. Hi Woco, I was treated with 3-week cycles of Keytruda for about 6 months; although I never had problems with headache. Hopefully you can find some relief from those. Take care now. Susan Rae
  21. Happy Thanksgiving to all! I don't know how I would have coped with my lung cancer diagnosis without having all of you and your words of encouragement, information and HOPE!! Bless you, Susan Rae
  22. Welcome Ronda! Yes this site is a god send. It sure has been for me. I'm a 62-year-old grandmother of 3. In April of 2019 I was diagnosed with stage 4 NSCLC with brain mets. I had my brain tumor removed in April and so far all MRIs have been clean! I started Keytruda the end of May 2019. My August scan showed lung tumor reduction but my early November scan showed lung tumor growth; so carboplatin and Alimta have also been added to my regimen. Very glad to have you aboard! You will gain invaluable knowledge from the members. I don't know what I would have done without this support system!! You take care now. Susan Rae
  23. WIth my Keytruda, carboplatin, and Alimta cocktail of chemotherapy, I have heard side effects are cyclical but I have also heard they can compound with every 3-week dose. Anybody have experience with side effects for this type of chemo cocktail? Thanks much, Susan Rae
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