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PaulaC

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  1. Like
    PaulaC got a reaction from Shercares in Throat irritation and involuntary exhaling   
    AnnaTaters
    I have noticed this since my lobectomy. I personally just thought it was my body trying to recover. To me it feels like I’m out of breath. 
  2. Like
    PaulaC got a reaction from LouT in Justin   
    Hello Justin, it’s been a bit since I’ve been in here but was reading through your post. I wanted to let you know that I went through the same diagnosis. Diagnosed on Feb 13, 2018. They found the spot during a X-ray Dec 29, 2017. It does take a while to get things going.
    Stage 3b and told no chance for surgery. The main tumor was in my left upper lobe and 3 lymph nodes in the center of my chest. 
    I was given a cocktail of Carbo/Toxal and 28 days radiation. My esophagus was a huge problem and I actually had to go see a digestive health dr to help me swallow. I went in twice for her to stretch my esophagus. They challenge was keeping my strength up. I drank a lot of ginger ale and water. I tried every type of ice cream, anything to get my calories. 
    Like you I had no markers. 
    I went through the whole treatment only missing one chemo day due to low white count. I finished radiation and remember being so weak I thought I was hiking a mile into the center. 
    I know it was a long story but the end results were they were able to shrink the tumor and the radiation took care of the lymph nodes. I was able to have the surgery which removed my upper left lobe and the effected lymph nodes. I’ve been NED since Oct 2018. 
    the biggest thing for you is figure out what you can swallow and if you have any questions just ask me. 
    sending positive and healing thought your way
    Paula
  3. Like
    PaulaC reacted to Justin1970 in Justin   
    Hi and thank you for the replies,I have been given some antacid and anesthetic medicines but it's not really sorting the pain out, I only have 3 more radiotherapy treatments left so hopefully it will get better soon, the oncology team have said the cancer is shrinking already and that they are really pleased with the outcome so far, I finish the chemotherapy on the 24th December so hoping for a better new year lol, 
    Kind regards 
    Justin 
  4. Like
    PaulaC got a reaction from Rower Michelle in Throat irritation and involuntary exhaling   
    It’s been a couple of years since I posted my response and I personally don’t think it was figured out. With me I think it was recovering from my surgery. I hope you get it figured out. 
    paula
  5. Like
    PaulaC reacted to D iane in Small Cell Diagnosis   
    Good morning.  We had a wonderful Thanksgiving and holiday weekend with friends and family.  
    Husband is doing pretty well.  He is eating good and he/we have figured out his abdominal pain is more from constipation than disease.  Once we took care of that he is feeling much better.  He has gained a couple of pounds back!  The heartburn has also resolved.
    Yesterday he had a port placed which went well. He also had an oncology appt. His labs are better than last week so 2nd cycle is scheduled to begin Monday.
    Some more good news.  No evidence of metastatic disease was found via brain MRI he had on Tuesday!!  👍
    Here's hoping all goes well with this round.  There's still going to be some trial and error involved, I just hope since we both understand a little more, it will help us stay ahead of any side effects.
  6. Like
    PaulaC reacted to Tomm in Durvalumab   
    Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track.
    Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/
     
    I got #14 today, blood work all good ,most  fatigue is gone. No side effects. No other medications except 1/2 gram cbd oil in a cap most nights
    CT says I'm still NED!!
    enjoy the season
     
  7. Like
    PaulaC reacted to RonH in Durvalumab   
    For my fellow Durva Club Members…as promised, my updates:
    I received my actual biomarker test report back today. Although I was told last week that I was EML4-ALK+ on the phone, I wanted to read the report for myself.
    Yes the written report confirms what I was told over the phone, EML4-ALK Positive. There was also a "NFE2L2 p130F Missense Variant – GOF" listed (Whatever that is I'll have to do some reading on).
    There were no EGFR KRAS BRAF ROS1 RET MET or ERBB2 (HER2) variants found.
    For those that Inquired: My PD-L1 Expression is Negative.
    So the wait is on for my Specialty Drug Insurance Company/Supplier to approve and send me my Alecensa (Alectinib). Wow, a 600mg dose twice a day!  The prescription was sent to them and I am just waiting for approval and receipt. Today I had to meet with the Oncology Nurse Practitioner today for "Targeted Therapy Alectinib Training", but to be honest between here on the forums and elsewhere I didn't learn anything new. But since I had to go in for my blood work (including thyroid panel and TSH) anyway why not listen to the NP for 30 minutes.
    Best to all out there. 
  8. Like
    PaulaC reacted to RonH in Durvalumab   
    Just a quick update:
    Well I had my consult with my previous Radiation Oncologist (from last year) and she believes that she will be able to use stereotactic radiation for my recurrent tumor. Its about in a perfect location and size for SBRT, in the middle of my right upper lobe and not on the surface near a rib and is also far away from my spine, throat, heart etc. She does want to discuss with her practice partners as well as a thoracic surgeon first before making a final decision to treat or not, but at least I am currently scheduled to be fitted with the immobilization device next week. She has some thinking and calculations to do regarding the number of doses (fractions) she will use due to the same spot being irradiated last year, but is thinking between 6 to 10 fractions over a 2 to 3 week period (not the normal 5 +/- fractions over 1 or 2 weeks). Also I forgot to mention, my Medical Onc told me that there are some indications (not proven conclusive yet) that having radiation treatments while on or have had immunotherapy may kick start the immunotherapy drug again and help it be even more effective. This along with the Med Onc sending my biopsy and blood samples off for biomarker (EGFR) testing for possible targeted therapy treatments in the future puts me in a much better state of mind.
    Thanks all....I'll keep everyone posted! -Ron
  9. Like
    PaulaC got a reaction from DFK in Durvalumab   
    Bob, you’ve got this!  I’m sending positive thoughts your way. 
    Take Care
    Paula
  10. Like
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Tom
    She mentioned  radiation option in that area again and she will discuss that option with the team next week, If i get anymore radiation i might be candidate for Los Alomos  New Mexico. I am fine with what ever plan they come up with and that the cancer has never spread thanks to Durvalumab and feel in very good health as the side effects are in decline from that drug. .Seven hours straight sleep last night.
    Bob
  11. Like
    PaulaC got a reaction from Robert Macaulay in Durvalumab   
    Bob, you’ve got this!  I’m sending positive thoughts your way. 
    Take Care
    Paula
  12. Sad
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Well i just returned from my meeting with the Onc this morning and the news is there seems to be a possible reccurence at the original tumor site since the last scan in April this year.She is going to discuss this next week with the team and most likely a pet scan to and do further checks and she will put me in touch with a Pulmonologist. Sound familiar. All the other pictures taken except that one area were fine on the ct scan.I was well aware of the odds with taking Durvalumab and onward we go with plan C in the near future. Que Sera Sera
    Bob
     
  13. Like
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Opal
    My thoughts are the Durvalumab done one excellent job of stopping any progression and they have caught this possible  recurrence at the original site early so i have no concerns there and from what i read there are lots of treatment options for recurrence at the original site.Thinking her plan is to let this settle take another CT then needle Biopsy  followed by pet scan and then hopefully targeted therapy depending on the results, Those decisions are up to the doc and as long as the are giving me treatment i am happy. The break is just fine by me.
    Bob
  14. Like
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Tom
    Is that valid at Wallmart for discount. lol
    I would like to take this opportunity to thank Imfinzi for supplying me the drug and clinic at no charge. I never thought this thread would become so popular this last year thanks to the people on this forum who contributed and all those that viewed over this time.
    Special thanks to Kleo  who was a great support in the beginning of this journey and alas had to stop the drug.I believe it was because she did not receive the Durvalumab goody bag.😎 Thank you Kleo and all the best on your new path.
    Going forward thanks to everyone and it is my hope we all can benefit from this drug in the coming months and years. Going to take a break now and will update on my future scans ,The  word is it could take up to eight weeks for the side effects of the drug to wear off.
    Bob
  15. Like
    PaulaC reacted to Robert Macaulay in Durvalumab   
    Thanks Michelle
    Just heading out the door for the last  one, Twenty six consecutive infusions and now Durvalumab will be a thing of the past. What next.😎
    Que Sera Sera
    Bob
  16. Like
    PaulaC reacted to Tom Galli in Durvalumab   
    For bravery, intrepidity and resolve in engaging life-threatening lung cancer, and for pioneering a new treatment path bringing hope to countless lung cancer suffers, Robert Macaulay is hereby awarded the Cancer Combat Action Badge* for enduring 26 infusions of Durvalumab.
    Stay the course.
    Tom Galli, LUNGevity LCSC Moderator
    *Photo is a US Army Badge awarded to soldiers who experience live-fire contact with an enemy. Experimental infusion of chemotherapy is a far more dangerous condition.

  17. Haha
    PaulaC reacted to Kleo in Durvalumab   
    All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁
    So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another.
    My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL
    This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way.
    Got home and thought...do you think she was saying BOWELS?
     
    🤣🤣
     
  18. Like
    PaulaC reacted to Barb1260 in Durvalumab   
    Woohoo. Brain MRI came back clean. That with the PET results a few weeks ago is making me believe this Durva stuff is doing what it’s supposed to. Only 19 more to go!!!
  19. Like
    PaulaC reacted to Charles in Durvalumab   
    Thanks Tom and Steph,
    Also answers questions whether prednisone stops the imfinzi from working, NO it doesn't, even the maximum dosage of prednisone (1mg per kg of body weight per day) and even when on 50 mcg of thyroid hormone replacement pills, and even low PDL-1 (10%) THANK YOU LORD!
  20. Like
    PaulaC reacted to Charles in Durvalumab   
    #9 gone for me, Pet/ct scan results in=  Shrinkage, SUV less. mediastinal node gone, with small plueral effusion, and small pericardial effusion, no new C ANYWHERE, Hoorah! Great scan!
  21. Like
    PaulaC reacted to Barb1260 in Durvalumab   
    Well the onc is so pleased with the PET results that I just have to keep going for the infusions and see her after the next CT end of September. Asked her if the Durvalumab causes weight gain, she said no but being cancer free can. Don’t think she means I’m NED yet, I think she’s referring to the little activity left in the tumor. 
    Anybody have head pain that comes and goes or a feeling of pressure in your head?  I’m getting a CT on Monday to check it out
     
     
  22. Like
    PaulaC reacted to Charles in Durvalumab   
    I would like to convey a public apology to Eagle13, Robert Macauley, and all who read and were offended by some comments I made a few posts ago in this forum. I was contacted by Tom Galli about these posts and chose to edit them for content but also wish to go a step further by issuing this apology to all concerned and hope that I will be allowed again in the good graces of my fellow Imfinzi pioneers older and newer. Thank you,    Charles......
  23. Like
    PaulaC reacted to Charles in Durvalumab   
    Tomm.
    Thank you for that but I must confess that my mental strength sometimes makes my typing fingers "say" things they ought not to say, Thank you for your inspirational words and techniques, as we all go into our different battles to slay our many dragons on our road to the defeat of the beast!      
    Charles....
  24. Like
    PaulaC reacted to Barb1260 in Durvalumab   
    Hey Tomm. Going for #6 tomorrow. Got my results for last weeks PET/CT. lymph node is inactive and no longer large-death to that spot of cancer. Main tumor is now 2.8cm and not very active. Radiologist gave me the lowdown on Tuesday. Small pleural effusion-he wasn’t concerned about it but he showed me the pic, it’s very small compared to other pics I’ve seen. Will get onc’s opinion on that tomorrow. 
    I actually flew north this past weekend and had no problem with fatigue like I thought I would. I’m feeling normal almost-whatever normal is. Enjoy the weekend 
  25. Like
    PaulaC reacted to Barb1260 in Durvalumab   
    I need to stop googling. 
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