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Curt

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  1. Like
    Curt reacted to PaulaC in First year Cancerversary and NED   
    All my toes are painted so maybe next pedi I’ll start having one done a special color. I was told Feb 13, 2018 that I had NSCLC and the whirlwind began. After chemo, radiation and surgery I start year two NED. 
    I think tonight I’ll celebrate. 
     
  2. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Curt, sending you a prayer and hug for tomorrow, please let us know how you are doing.  Love and light ❤️
  3. Like
    Curt reacted to Rower Michelle in Wedge Lobectomy Scheduled Feb 26   
    Prayers for you Curt!  Hoping all goes as planned.  
    Michelle
  4. Like
    Curt got a reaction from LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Thank you for checking in Michelle.  I’m on a family vacation this week so that’s a nice distraction.  I’m ready to get the surgery over with and confront what’s next.  
  5. Like
    Curt got a reaction from PaulaC in Wedge Lobectomy Scheduled Feb 26   
    Thank you for checking in Michelle.  I’m on a family vacation this week so that’s a nice distraction.  I’m ready to get the surgery over with and confront what’s next.  
  6. Like
    Curt got a reaction from Steff in Wedge Lobectomy Scheduled Feb 26   
    Thank you for checking in Michelle.  I’m on a family vacation this week so that’s a nice distraction.  I’m ready to get the surgery over with and confront what’s next.  
  7. Like
    Curt got a reaction from Rower Michelle in Wedge Lobectomy Scheduled Feb 26   
    Thank you for checking in Michelle.  I’m on a family vacation this week so that’s a nice distraction.  I’m ready to get the surgery over with and confront what’s next.  
  8. Like
    Curt reacted to Rower Michelle in Wedge Lobectomy Scheduled Feb 26   
    Hi Curt
    Just checking in to see how things are going in advance of the surgery next week? I’m thinking about you!
    Michelle 
  9. Like
    Curt reacted to wwroam in Good CT scan results   
    Yesterday I received the results of the CT scan from a week ago.
    Still in remission. My oncologist seemed quite pleased /confounded as I have never had surgery , only chemo ( Gemzar+ Carbo and Taxol + Carbo) and radiation.
    He had played a small trick on me by leaving the scan from his previous patient on the light screen. it looked pretty awful but he did say that it wasn't mine and that mine was a lot prettier.
  10. Like
    Curt reacted to Susan Cornett in CT Results   
    Today's results: NED! The SBRT I had in September continues to work its magic. I'll scan again in 4 months instead of 3. Super Doc says he doesn't have a standard to follow for my case because it's been a little unusual.
    This leads perfectly into next week's 3 year cancerversary.  
     
  11. Like
    Curt reacted to Pam Vandeberghe in small cell lung cancer and moved to brain as well   
    My husband was diagnosed with sclc in February of 2018 (almost a year ago).  He had a couple of pretty large tumors in his right lung (inoperable) and lymph node involvement as well. He began chemo treatments a week after diagnosis and they used carboplatin and etoposide. He had 4 cycles that were 3 days each. Starting with his second cycle he also began radiation on his tumors. 30 treatments, 2 a day for15 straight days. Then had 10 low dose brain radiation treatments (PCI).  It all lasted from February to July of 2018. You are correct about the tethering statement as we have practically lived at the cancer center.  The cancer has now metastasized to his liver and he has undergone two more cycles of chemo now along with one of the new immunotherapy drugs, TECENTRIQ. He had 6 liver tumors which 4 are gone now and the remaining 2 are 50% smaller.  He has had TECENTRIQ 3 times and is tolerating it fairly well. They have now found a spot on his rib bone so have stopped chemo but are continuing Tesentriq and adding a drug called zometa for bone strength.  He will get scans every 2 months now instead of every 3 like he had in the beginning. The decision is ultimately yours and your family’s, of course, but we both would recommend you do treatments.  Our family has had the blessing of him still being with us for almost a year now, when it appeared to be a very grim situation in the beginning as I’m sure it is for you right now. It has been VERY hard on him (and me too) but would we take the same course again, knowing and going through what we have?  He and I both say yes!!!  I will tell you the honest truth.  He was hospitalized 3 times, low sodium, needing blood transfusions, and got sepsis on top of all that!  He’s always been a very strong man.  A brick mason.  A weaker person may not have been able to endure all that he’s had to endure and I really believe strength is important for these types of treatments. But, for any side effect, they usually have something that will help too though. It’s a very hard road to go down but I would recommend that you do it. Any extra time you get is a blessing and every day they are finding new immunotherapy drugs to help sclc.  Despite the extremely rough journey there is always hope. Everyone responds differently too so you could have an easier time of it than my husband has. Take care and the very best of luck to you. If you are near an MD Anderson facility, my husband and I would strongly recommend them too. I hope sharing his story has helped you.  Keep us updated.  
  12. Like
    Curt reacted to Golfman in small cell lung cancer and moved to brain as well   
    Thank you, Pam and Ron. I'm very fortunate that people like you and others have taken the time to provide such invaluable insight. This really helps us with our decision, and even more importantly, reaffirms that there are such incredible people like you in this great country. I was given my diagnosis on Feb 14, and have to admit that everything the Oncologist said after her "2-4 months without treatment or 12 months with treatment" went over my head. I was numb. Luckily, my wife was there to keep me focused.  She tells me they will be including immunotherapy along with my chemo. We are scheduled to meet with a radiation oncologist on 2/18, and will proceed with treatment. My wife and I will now begin the long road living with this diagnosis. I will keep you posted on our journey. There are no MD Anderson facilities nearby, but we will be using Northwestern Medical, which is highly recommended.
  13. Like
    Curt reacted to Ron for Peggy in small cell lung cancer and moved to brain as well   
    So sorry to hear of your diagnosis and am sure you are struggling for answers to many questions.  My wife, now deceased, was diagnosed with small cell in June, 2017 and passed away 11 months later.  Starting out we knew the survival rates, once the cancer had spread, were really poor but we opted for the standard chemo therapy knowing that this was not a permanent solution but hoping some new effective treatment would emerge and potentially be effective for her.  She tolerated the standard chemo very well and did not cause suffering and she showed good improvement for three months and at the end of the six month treatment plan we were informed that the chemo treatments were no longer working (we knew that there was no permanent benefit from the chemo) and opted for an immunology drug called opdivo which she tolerated well but proved ineffective.  At that point she chose to discontinue treatment and go into hospice and she did not suffer.
     No one can tell you what to do.  I can say that I am sure her life was extended for several months, that she was able to enjoy family and friends up until her last week of life and the treatments were very tolerable.  I can also say that I know the chemo treatments are usually effective for longer period than what my wife experienced and pray there is now some better treatment available for you.
  14. Like
    Curt reacted to Lisa L in Pet scan   
    Tom that made me smile so big ..Curt I will be checking in on you ..you guys are the best.
    Love and Light ❤️
  15. Haha
    Curt reacted to Tom Galli in Pet scan   
    Lisa,
    I just read a "study" that states, unequivocally, Hawaiian vacations are the best therapy for troubling lung nodules..... 
    Stay the course.
    Tom
  16. Sad
    Curt got a reaction from Rower Michelle in Thank you   
    Bes my father opted for hospice after it was clear the treatment for his lung cancer was not having the desired results.  It was difficult for me and others to accept, but I did get the opportunity to spend a lot of time with him during that period.  I am grateful we were given that time to spend together free of doctors, hospitals, scans and treatments.  I believe he was grateful for the reprieve as well.  My thoughts and prayers are with you and your husband.  
  17. Like
    Curt reacted to Rower Michelle in MRI Scheduled 2-6   
    The results are in- no cancer on the spine!  The Alectinib knocked it out!  Thanks to my national support team for the good wishes & prayers! 
    Chest CT is 2-18..... forward march!  
  18. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Curt I’m glad you will be getting answers in a few weeks and I’m sure it will be fine.  Like I said I finally see the pulmonologist on the 13th and I’m sure he will have me wait another month for the ct scan.  Hope you enjoy your trip to Mexico, after I find out what doc says I’m going to Hawaii for 12 days.  Keep us posted.
    lisa
  19. Like
    Curt got a reaction from LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Lisa I have been feeling pains on my rights side but as Lexi said it is highly unlikely it is a results of the nodules.  Stress and tension can have amazingly negative affects on your body.  I’m chalking it up to that.  As my very wise father said, “at a certain point in life if I wake up without any discomfort I’ll start to worry”.  
  20. Like
    Curt reacted to LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Yeah, that was the plan with my surgery, too.  Because there was no biopsy, they did the wedge resection first.  I found out afterward that the resection did not show cancer, but my surgeon was sure enough that it was, that he proceeded with the lobectomy anyway.  (It also turned out that the wedge resection did not get ALL of the nodule).  Anyway, glad he did, because the pathological exam of the tissue removed in the lobectomy showed that it WAS cancer, and that it was "deep," with possible pleural invasion (according to the pathologist--my surgeon didn't think there was any pleural involvement).
    Actually, though, even if it had turned out not to be cancer, I would not have been upset.  I feel just fine and don't miss the missing lobe at all.
  21. Like
    Curt reacted to Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Curt,
    Sorry about the surgical communication gap.  I was lucky, my surgeons completely explained everything but I know people who get very little explanation.  I also know lung cancer survivors who wanted very little explanation.
    Lung surgery is difficult to explain. Often surgeons only get a "pencil thin" view of the problem before and the situation vastly changes during surgery. Sometimes there is too much uncertainty.  Your surgical condition typifies the uncertainty. Then there are the vocabulary challenge, the medical abbreviations used in surgery speak, and even concern about potential litigation that hinders communication.
    It is complicated but you have an approach and I do hope your VATS solves the problem.  Nothing yields a better path to NED in our disease than surgery.
    Stay the course.
    Tom
  22. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Hi Lisa.  Thank you for the light and thoughts.  I have been keeping myself distracted until the biopsy at the end of the month.  I had a trip to New Orleans this last week for work and a vacation to Mexico in a few weeks.  The distraction is good.  I am looking forward to getting this either over with or knowing what the next steps are.  I appreciate your thinking about me.  The support on this site is amazing.  
  23. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Hi Lexi.  Yes it is going to be VATS.  The doctor tells me the biopsy or the lobectomy are the same procedure. The only difference is how much of the lung is removed, a small nodule or an entire lobe.  That actually created a lot of confusion for me with the first doctor.  She didn’t do a very good job describing that and I left thinking the only option was the full lobectomy, not the smaller wedge resection. The second option cleared that up.  I followed up with the first doctor and it turns out that was also her plan, it just wasn’t as clearly explained.
  24. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Curt I have been thinking about you..I know you are scared I am also scared and you are probably not getting on here trying not to think about all this until your surgery which I understand totally. If you need a sounding board I am here, I haven’t even got a diagnosis or seen my pulmonologist until feb 13 but yet I feel we are in the same boat so I am, just know I am listening my friend. Love and Light ❤️
  25. Like
    Curt got a reaction from LexieCat in So frightened   
    Thank you Lisa.  We do seem to be on similar paths.  I’m hoping it’s nothing for both of us.  The early testing does create a lot of uneeded stress for the 60% of people that have nodules that are benign.  It does also provide a potential for a cure for the other 40% who do have cancer.  I’ve been told that some people can have lung cancer for a very long time and it never grows.  My grandmother had a nodule on her lungs for 20 years that never grew.  They found it when she was in her 70’s and they opted to not do a biopsy and just to watch it.  She ended up passing away in her 90’s, her passing was not related to cancer or her lung nodule.  Spiculated is the word that rings in my head as well.  When I went to Sloan Kettering for a second opinion they said that does increase the concern but they said they see plenty of nodules that are spiculated that are not cancer.  Whether or not it grows over time and whether it glows on the PET are more concerning. They have greater concern for me because of my family history.  My father passed away from lung cancer and three of his sisters have had it, two of them also passed away.  The one that is still alive had a lobectomy and has been NED since.  They gave me the option to continue watching it or go ahead and do the surgery.  I’ve been at this for almost a year at this point.  I’m ready to know what it is and what needs to be done going forward. 
    My best advise is don’t think about it anymore.  Worry about it when your next scan comes around.  Until then assume it’s nothing and carry on with life.  Just make sure you do the follow up.  There was a part of me when the time came for my follow up that really didn’t want to put myself through it again.  You have to do the follow ups.  
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