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Susanrae

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  1. Like
    Susanrae got a reaction from Niess in Happy Thanksgiving to my LC Family   
    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
  2. Like
    Susanrae got a reaction from RondaBeaty in Newly Empowered!   
    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
  3. Like
    Susanrae reacted to LouT in Hopeful, confused and sometimes pissed off   
    Niess,
    I told you there were some super folks on this forum, didn't I?  Stick around and we'll all go through this with you.
    Lou
  4. Like
    Susanrae reacted to DFK in Hopeful, confused and sometimes pissed off   
    Niess....laughter in your heart is a magnet for gratitude, blessings and a big fat belly laugh.....and that ain't no jive since we both got dem dere belly fat now! 
    Hugs, DFK
  5. Like
    Susanrae reacted to Niess in Hopeful, confused and sometimes pissed off   
    Hi ya lady. You're too funny and your story sounds familiar.
    We are in the sticks 75 miles North of Sacramento, where we chose treatment for the same reason as you did.
    Wow, I wouldn't wanna give up my sleep number for M-F treatment outta town. Our 100 lb and our 85 lb puppies wouldn't like us being gone either. That's another reason I opted for once a month treatment rather than every three weeks like doc wanted.
    I am 5' even and always weighted around the 110 range and was a strict vegan since 2009. Bring on treatment and I dropped to 95 lbs. Doctor said eat everything and anything ya want. Do whatever ya want and enjoy as much as you can. So I did. AND boy howdy did I go for it.😜😁
    It was a green light for me to eat everything and I did. Now I'm suffering from a tummy that rolls over (which I've never experienced before) and am up to 126.
    Now I'm like, I really like food and have developed the bad habit of late night eating before bed that I gotta stop but so enjoy....lol
    Gosh, thank you. Sitting here typing this, sharing it with my husband and laughing is such a blessing and so uplifting. You Rock sister, diggin it for sure.
    Wishing ya well 🌻👾🌻
     
  6. Thanks
    Susanrae got a reaction from Rower Michelle in Started chemo: Alimta and carboplatin Wednesday, 11.13   
    So far I am tolerating the chemo combo well.  No nausea or fatigue.  Finished the steroids yesterday and also walked our white lab and hopped on the exercise bike so I slept well last night, about 8 hours where the previous 2 nights were about 5 hours.  Thanks for the info Michelle!  Your posts are always informative and much appreciated.  Susanrae
  7. Like
    Susanrae reacted to Tom Galli in Started chemo: Alimta and carboplatin Wednesday, 11.13   
    Susan Rae,
    Is a mass in the lung preferred to the pulmonary artery? Absolutely! I do hope your new combination chemotherapy reduces all tumors and prohibits metastasis.
    Stay the course.
    Tom
  8. Like
    Susanrae reacted to Rower Michelle in Started chemo: Alimta and carboplatin Wednesday, 11.13   
    Hi Susanrae-
    Here’s the best part of your post- core biopsies being sent off for analysis.  Who knows, this chemo combo might be an interim strategy.  
    That’s what happened to me.  I had the triple: carbo/Alimta/Keytruda for one dose before the biomarker came back with a targetable mutation.  
     
    I tolerated the chemo combo well, no nausea at all.  Jitters from the steroids with terrible constipation.  Keep the Miralax on hand!  Even though I only had one dose my tumor did start to shrink.  
     
    In the event the labs don’t yield any new information to change the treatment plan, it’s still important to have your baseline  panel as clinical trials are opening up regularly.  
     
    You might feel really tired for a few days so sleep while you can and do try to stay active, use soup cans for weights, body squats or try and walk one mile a day.   I think the walking helped me get over the hump. 
    Lock & load sister! 
    Michelle
  9. Like
    Susanrae got a reaction from Tom Galli in Started chemo: Alimta and carboplatin Wednesday, 11.13   
    Information much appreciated.  Thank you Tom.  Susan Rae
  10. Like
    Susanrae got a reaction from Roz in Started chemo: Alimta and carboplatin Wednesday, 11.13   
    Good morning,  It has been awhile since I posted an update.  Initially, after my April 2019 diagnosis, Keytruda alone had been working to reduce tumor size.  But, I had a PET scan last week which showed the mass on my pulmonary artery and the one in my right lung were increasing in size, the largest mass (pulmonary artery) increased approximately 2 cm in 3 months.  But on a good note, no metastasis!  
    Initially back in April 2019, the radiologist thought the largest tumor was on my right pulmonary artery. They performed a CT guided biopsy on Wednesday (11.13.19) before my chemo treatment and the radiologist, while viewing the CT scanner, told me he "thinks"  this mass (originally throught to be on my pulmonary artery) is in my lung.  My opinion is that this is a good thing?!?!  Any thoughts/opinions about this will be appreciated.  I will also ask my oncologist about this during my next visit in 3 weeks when I see him before my next treatment.  They took 8 core biopsies and are sending them to 2 different labs to ensure they are giving me the best treatment for my cancer.  
    They added Alimta and carboplatin to my Keytruda which I started on Wednesday, 11.13.2019.  So far no side effects, but have my medications at hand in case they begin!!!  Thanks for all of the information you all have provided on this site so I have an idea of when symptoms might start and how to cope!!  Hopefully, the added chemotherapies will reduce the tumor sizes--yes, praying a lot!!  Thanks for listening!  Susan Rae
  11. Like
    Susanrae got a reaction from Susan Cornett in The results are in...   
    Susan,  VERY happy for you!  Susan Rae
  12. Like
    Susanrae got a reaction from Tom Galli in New to all of this   
    Managing the stress is hard for all so do not feel alone;  all members on this sight DO understand what you are going through and it is tough.  For dealing with my stage 4 NSCLC with brain mets diagnosed April 2019 for which I have been on the every 3-week Keytruda plan and tolerating it well, I go with the old cliche "one day at a time."  I also try hard to focus on chores that I need to accomplish daily, which helps keep my mind off the cancer aspect of my life so it does not consume me.  We are all here for you and you will get through this!  Take care of yourself.  All the best.  Susan Rae
  13. Like
    Susanrae got a reaction from MarieE in Another newbie ... Still a bit in shock   
    Marie,  Very happy to hear that your hubby is doing well 😁!  Take care now, Susan Rae
  14. Like
    Susanrae got a reaction from Tom Galli in The results are in...   
    Susan,  VERY happy for you!  Susan Rae
  15. Like
    Susanrae got a reaction from Roz in Scan Time Again   
    Michelle,
    Your input is much appreciated and valued on this site--thank you!  
    Enjoy the vacation and try not to stress about the upcoming scan; although, we all know it is easier said than done.  You take care now,
    Susan Rae
  16. Like
    Susanrae got a reaction from Rower Michelle in Scan Time Again   
    Michelle,
    Your input is much appreciated and valued on this site--thank you!  
    Enjoy the vacation and try not to stress about the upcoming scan; although, we all know it is easier said than done.  You take care now,
    Susan Rae
  17. Thanks
    Susanrae got a reaction from Rower Michelle in MRI of Spine Tomorrow   
    Congrats on the 25 years!  Enjoy your trip!  
  18. Like
    Susanrae got a reaction from Tom Galli in Ground Control to Major Tom   
    Positive vibes going your way!  Good luck to you!  Susan Rae
  19. Like
    Susanrae reacted to Sharon L. in CT scan results   
    My CT was Clear!  It seems the nodule they mentioned wasn't new but had never been written in my reports before now!  I wasn't aware the radiologist could put whatever they wanted in a report.  I wish I had known this before and I wouldn't have been worried sick all week.  I'm so grateful for still being cancer free!  I'm sorry I didn't post sooner but wasn't able to connect on my iPhone so I'm on my computer now.  Thanks everyone for your support!
  20. Like
    Susanrae got a reaction from Sharon L. in CT scan results   
    Sharon,  My prayers and positive vibes going out to you!  Hang in there!  Take care now.  Susan Rae
  21. Thanks
    Susanrae got a reaction from Deb W in MRI of Spine Tomorrow   
    MRIs are the pits, but you can do it.  I try and think, "OK, this is just 40 minutes out of my entire day, I can do it."  Take care now, Susan Rae
  22. Like
    Susanrae got a reaction from Tom Galli in CT scan results   
    Sharon,  My prayers and positive vibes going out to you!  Hang in there!  Take care now.  Susan Rae
  23. Like
    Susanrae got a reaction from Tom Galli in Introducing...   
    Hi Marybelle:    Welcome to the site!  You will find invaluable support here.  Since April 2019 I have been getting treatment at Mayo Clinic, Rochester, MN, for my stage IV lung ca with brain metastasis.   I also worked there for 25 years.  
    You should be given a business card from any doctor, physician assistant, etc, that is involved in your husband's surgery.  If they don't offer one, ask for it and keep these in a safe place.  The Mayo complex is very large; I assume your husband's surgery will take place at St Marys Hospital.
    Please contact me via e-mail if you need any assistance.  I'd be happy to assist in any way.
    You both take care now...  Susan Rae
  24. Like
    Susanrae got a reaction from LouT in Got a call on my first scan result   
    I just saw your post; I have been away from the site for a few days.  Stable/NED is great news and relief is an excellent word to use after receiving this great news!  And you have such an excellent attitude--inspiration for us all!  Take care now.  Susan Rae
  25. Like
    Susanrae reacted to LouT in Newbie spouse of LCNEC patient.   
    Sophie,
    Like others, I want to welcome you to the forum.  You'll find a great group of folks here that can share experiences, answer some questions and give support so that you don't have to feel alone.  Being a caretaker alone is a very tough road (my wife has Alzheimer's) on its own add to that your husband being ill and it becomes a perfect storm.  Even after your mom leaves you're still worried about her and worried about your husband.  The only advice I can give you is to take care of you!  Let me start by ensuring you know that I'm not saying not to care about your husband, but I am saying that you need to find some time each and every day (it could be 30 minutes...moving up to an hour...then more) when you can be out of the caregiver business.  It can be a walk, a car ride, coffee or lunch with someone (friend, acquaintance), but you need some time for you.  Trust me, prior to my cancer I was running so hard that there were times I could hardly make it through the day and numbness became my defense against all the worry and pain.  If you have any hobby (music, knitting, painting, fitness) find some time to do it.  If you are religious speak to a minister, priest or reverend.  Please find something that gives you joy and make time for it in your life.  Your batteries need recharging.  You have a big responsibility to handle and you need to realize that if something happens to you, then your husband loses care.  But, once he recovers, he's going to want his wife back and you need to take care of her.
    This may sound silly, but imagine you see a good friend going through what you have just gone through.  That friend is in pain, tired and overwrought.  You're worried about her and her well-being.  What would you say to her???  I'll bet the words would be gentle and kind, nurturing and supportive and would be stressing how important she is and how she deserves to be taken care of.  Those words are for you... 
    Stay well, smile, breathe and we'll be here for you.
    Lou
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