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Kate7617

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Everything posted by Kate7617

  1. Thank you very much! No I wasn't able to do 26 treatments of Durva, I did 5, that was all my body was able to tolerate! The great news is NED after one year, only scar tissue there. So 6 months and then another test. meanwhile, at home day 7 Cov 19 has decided to dictate my life, hey I am all for self isolation when needed. I love my house, and can always find ways to keep me satisified. Hey, we pay so much for the roof over our heads, now it's time to enjoy it. Be well, my cancer buddies! Kate
  2. Great news! NED is on our side, keep on keeping on and enjoy your loved ones daily! Kate
  3. Please check your PDL1 and make sure no auto immune disease is in family history, being your own advocate is worth it's weight in gold! Good luck and hoping for a NED for you! Wash hands frequently and don't touch your face is my advise for all of us! Kate
  4. Well I do not know how much the Durva came into play for me, I only had 5 infusions of it, and that sent my health into a downward spiral, but happy day today clear scan and I am on cloud 9! Thank you for all the good vibes and words of encouragement, I am grateful, Kate
  5. No uptake= No cancer, as far as I was told. My PET on Wednesday, great results, clear, so I'm good for another 6 months check with PET. So I am going to live it up! At home, with my compromised lungs until the Corona virus is in the rear view mirror! So now is clear= NED? Thanks Kate
  6. Hmm, Barb well to see if Durva is actually killing cancer, I honestly believe that a PET wouldn't give that information. What it will show ( as you are aware of) is any uptake. In fact Durva has not gotten that far to tell on a PET. So the CT will show any new tumors ( God forbid) so that is where they leave it, unfortunately. And you are still tolerating the Durva walking 3 miles so I am saying Hip Hip Hooray, and lets start another day!!! The best always, Kate
  7. Fight for your rights! And don't quit, you are entitled to a certain amount of PET scans while battling cancer. FIGHT FIGHT FIGHT!!!!
  8. Hi Polly, something that I learned along the way, check what your PDL1 is, mine was negative, also make sure that auto immune disease does not run in family history. I had a very bad experience with durva, and right from the start had very very bad side effects, also with breathing. I do pray that the Dr that is treating you is on top and has your complete recovery in mind, unfortunately I didn't have that experience and now suffer from the after effects, I am not trying to scare you, however you need to be your own advocate, I certainly wish you every success and hoping that you are breathing a little better now! You have had success with chemo radiation and that is TERRIFIC! All I know is that Durva is not suited for everyone. Also check to see if you have bio markers. You have to be aware of all that is available to you. Prayers are coming to you now from me! Kate
  9. Thank you so much to Eagle 13 and to DFK, inspiring and uplifting messages, needless to say! I believe I had a bio marker EFGR and it is no, if there be any others I am all ears! And thank you Eagle 13! Hey its hard enough to be diagnosed with stage 3b lung cancer, then to have Doctors that tell you....We aren't expecting a miracle, and looks like you have one or two years to live was really the worse thing a Dr could possibly say! Well I am a firey red head ( back in day) lol and now I got my Irish up again, and with God willing we will show those former Drs Just what I am made of! I'm not going to worry, worry is useless, and I continue to be grateful for each day! You are all in my prayers and with all the prayers coming around I can't lose! Thank you again, and I will let you all know what happens with PET SCAN when I know! Kate7617
  10. Hi everyone! Been a while wanted to let you know Monday I get a PET SCAN and follow up with Onco on March 11th, scary times for me, needless to say. The Durvalumab didn't work for me, as I said I got Hashimoto thyroditidis heart problems, skin basel cell cancer, my spine is degenerated, had pnemonuitis so basically my health is not all that. It truly sucks, because my former Doc wouldn't listen to me when I said what was happening. I wish I had happier news, but I am very happy that some of you guys it is working for! I could certainly use some encouragement now, I did sign up for respiratory therapy, so that is covered by insurance. I am going to wait and see how this test goes on Monday! Keep on keeping on, like I do against the odds, hey all things are possible with God!
  11. Georgia, thank you for showing you care by messaging me, truly appreciate you doing that! I made an appointment for this Wednesday to speak to my new onc regarding clinical trials and hoping for good news. thanks again, and I will keep you posted. Enjoy your day!
  12. DFK thank you for your very kind words no treatment now I asked for clinical trials, nothing being offered so needless to say I sit on the edge of my seat everyday. Not sure of anything, however Who is? I’m going to talk to new onco this week local papers are showing promising hopes about clinical trials. I don’t understand why nothing but every 3 months have PET SCAN. I don’t know???? Wishing you all the best DFK I’m so happy you made NED! Stay close, we need your optimism! Kate
  13. Wow!!! Great news NED is the best news ever! I have changed onco and I am very happy, although I still have a lot of side effects from 5 infusions of Durva, I have Hashimotos thyroidists, and my skin is finally doing so much better! after the 5 infusions all I did was go from one Doc to another first a cardiologist, then thyroid doc, dermatology doc, had basel skin cancer all caused from the Durva, I asked to stop the treatment before I got to 5 but the Dr kept pushing me to continue, it was a terrible experience, and I am still suffering anxiety from it, although I am positive we all have experienced anxiety from the cancer itself. I wish that I was able to tolerate the Durva, with a PDL 1 Neg it seemed fruitless to me. I am so happy that DFK is now NED, that is wonderful news, congratulations! I asked if there be an alternative to Durva, and was told, "not in this setting" needless to say my former onco was not the best at giving bad news. Well onward I go, March 9th I get another PET/scan and follow up with new onco please pray for me, it is very scary not having much support here from home, and I appreciate all the good news everyone has to offer. Kate
  14. Katum, Sorry to hear about your Mom's lung cancer. She is a blessed abundantly to have you as her daughter, that is awesome! Everyone has already said the things that needed to be said to help you on this journey. I will repeat that I too am here for you. I pray that your Mom will recover, every day there are new treatments and it could happen to us that we will be cured! Kate
  15. Well Tom it's time to celebrate! Only thing is I recommend not going to the beach with sandals on, lol. Ahh who cares???? Do what ever floats your boat and Enjoy! Kate
  16. Thanks to everyone for the input and for all the prayers! Going to a 2nd opinion, and going to ask about biomarkers and such. The Doctors that have been treating me act as if I am from another planet. Never been treated so poorly in my life! and then to put the icing on the cake, my NOW Dr wants to talk with my 2nd opinion Dr, Yikes!!!! and that's after my NOW Dr seems to find the only solution is to watch me carefully on CT scan every 3 months, WHAT?????? Really is that all there is to offer me? I sit here shaking my head, 400,000.000 $$ LATER, guess I can't get Durva so I get the boot. No more money, terrible to think that way, only I have good reason to believe that. God Bless us all and keep fighting for life! Kate7617
  17. So glad that you have positive results with Durvalumab. Wow!!! Keep on keeping on! Kate7617
  18. Thank you so much for your concern, when I speak to my Doctor about this, he looks at me as if I am from another planet. Of course anyone would want to know if there is an alternative, why wouldn't I? I have never been treated so poorly in my life, and not to mention MSK has gotten paid more than 400,000.$$$ for my treatment, they tell me go to another facility. I have an appointment on Tues, then get this.... Management in MSK Commack calls and asks if it be alright if my Dr there at MSK speak to my second opinion DR, ( wow! Are these Dr's kidding?) so much stress! Thanks to all of you for the input, I am looking into every option. Kate7617
  19. I realize your posting is from 9/23/18 however I was diagnosed 1/29/19 had chemo/radiation/ platinum based, and then the Durvalumab nightmare started. I had 5 treatments and I can not tolerate the side effects and now have basal cell skin cancer on my back, so I asked the Doc if there be an alternative to Durval and was told this is the only option, and we will CT scan every 3 months to see if the cancer has progressed. Wow, this really stinks. If there be an alternative and there is anyone that can attest to it, please inform me. thank you.
  20. I agree with that completely, thank you sharing this info, I have asked to have my treatments every 3 weeks instead of every 2 weeks. So far they are not budging on my request. I have concerns that I may develop RA, my brother at 62 died from the effects of RA, and now my sister has RA, is it genetic, don't know, but I certainly don't want to find out the hard way. Plus the swelling is really a very big problem, now tomorrow I have to go back to my cardiologist, for a heart monitor and sonogram. Ok My life belongs to Doctors and hoping they do the right thing for me.
  21. It is a very difficult place to be. And I know it first hand, when I get my CT scan and follow up with the Doc I will know more. Muscle relaxers? We know the side effects of the Durval is a great problem, but should it be enough to abandon the whole idea of immunotherapy? What you need to ask the Doc...… What are your expectations for me moving forward with this treatment? That is my question. I am so sorry that you are having pain, I went to a pulmonary Dr to actually be informed, and it helped. Every day is a gift, let's remember that. I honestly believe that the Doc gives a prescription just to say, hey I did something. I shake my head.
  22. HI Barb, so the issues you are facing were very similar to what I had. I was given my 2nd round of Durva on Monday, on Tues night when I inhaled my right lung and then around to the front chest was so very painful, went to "triage" they sent me for a CT scan, after being there 3 hours ( sick) the diagnoses was pneumonia, I didn't believe it. I don't believe in coincidence, so I saw a pulmonary Dr that confirmed that is was a result of the CRT and durval, Hmm, could be we all know something about our own bodies? Yes. Well continued 3 more treatments of Durval, I can not handle the side effects, I am blown up like a Thanksgiving Day Float at the parade. On to the cardiologist and it's time for a break! 5 weeks now, I am 85% improved with my health and fatigue and shortness of breath. Yippeee! Is there an answer to this...… not yet. I have a CT scan 10/31 follow up with new Dr 11/4. PDL 1 neg, 12% chance it will work, hmm Dr says, I should go with it, I would like something with better chances, I guess we all do. SO now the ball is in my court, pray for me I make the right decision, and I will pray that you will also get your concerns met with positive answers. Being your own advocate is the place to start, although it is an unpopular place to be in the medical journey, it is what is needed I believe. Best to you! Kate
  23. Hello everyone that is getting IV durvalumab, after CRT, is any one coming up with lung inflammation, OGC, that the Dr won't treat? I have had 5 infusions with durvalumab, and I am getting very bad side effects, sharp pain in my right lung in back, radiating around to my front chest. was treated with Leviquin 500 mgs 7 days. My recent CT scan shows that there is still inflammation but Doc says my results are good. Huh, I will never understand conflicting jargon. Oh Well on to the Doc today, and see what happens. PS The CT was on Sept 17th, and as of today I do feel like I am breathing with less difficulty. Thanks to all of you! And you are all in my thoughts and prayers.
  24. Thank you, Tom, for taking the time to care, in this busy world we live in, it means so much to me!

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