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  2. My thoughts are with you during this time. I'm so very sorry for your loss
  3. Today
  4. Hi Ro, the conference is going virtual this summer. Details are still coming but I will post them when we have them.
  5. D iane, I am so sorry to hear this. I'm thinking of you and please know we are here for you.
  6. MarieE

    TP53

    Thanks, Tom. Makes sense.
  7. D iane, I am sorry to learn this news and I'm sure you are devastated. Thank you for remaining by his side and caring for him as he endured treatments. My wife's caregiving was of vast comfort to me and I'm sure your husband held the same view. I have no magic words. Lung cancer sucks. Small cell sucks squared. I am praying for your peace. Stay the course. Tom
  8. Marie, Welcome here. I certainly don't have an answer to the genetic radiation exposure risk you are speaking of. I'd pose the question to your husband's radiation oncologist. I do recall, however, in my first consultation with my radiation oncologist, her discussion of a risk of radiation exposure is the possibility of a future radiation-induced cancer. In resolving that dilemma, I thought it best to go after a certain problem rather than worry about a possible problem. Stay the course. Tom
  9. My husband lost his battle last Sunday, May 24th.
  10. I'm so sorry for your loss, Lily. You are, of course, always welcome to keep posting here and we have a Legacy Facebook Group as well if you would like to connect with others who have lost loved ones to lung cancer. https://www.facebook.com/groups/legacysupport/ You and your family are in my thoughts and prayers.
  11. I am also so sorry for your loss. May the Lord comfort you and bring you peace. I lost my husband to lung cancer but he will always be with me in my heart. Donna G
  12. Lily, I am very sorry for your loss. I lost my Mom on 5/5 so I know your pain. Hold on tight to the memories. I hope you will find peace during this sad time.
  13. Yesterday
  14. Roz

    First Time Out

    Did I already miss the lung cancer summit?? Ro
  15. Steff

    First Time Out

    I wandered into public for the first time in awhile to pick up some tomato and jalepeno plants - ours got zapped by the horrible wind we had for 4 straight days. I donned a handmade mask and a hat - the mask to supposedly protect others from my possible germs and the hat because I have not had a haircut since March. Not only was I overheated from wearing the mask and hat, I was overwhelmed by people! My neighborhood consists of 4 homes and 11 people, all separated by 5 acres each. We may see each other in the distance and wave, but that's about it! In my home, it's just my husband and I. We've gotten so accustomed to grocery pick up and Amazon deliveries that I am going to have a hard time entering society again!
  16. Susan - I echo your and Tom's thoughts - my mom says all of the time...I didn't beat lung cancer to die from this crap! lol I've been lucky enough to work from home too. I've come to absolutely love it and dread the day I must return to a physical office and coworkers (who aren't the furry, 4 legged type). As a part of management, I have had a voice in what our "new normal" will look like. My state has 4 phases of start-up, each County is considered a separate entity (apparently COVID doesn't cross county lines!). My county just entered Phase 2 (don't ask what that all means because I have no idea!), but it does mean that we are getting closer to going back to "normal" in a month or so. Now that I have a general timeline, my anxiety has peaked. I feel that if I am forced back into my physical office, I have to choose between my job and hugging my parents. I hate that this is a choice we have to make not only for ourselves but our loved ones. While I am less worried about myself or husband contracting the virus, our isolation is driven by our need to see our family. Although my concern has not been related to recreational activities at this point, I have given some thought as to what future concerts and similar large events will look like. I'm scared to think about it because my mom and my favorite thing to do is go to concerts. She has also gotten into the local non-professional hockey team in her town. I got her season tickets this year (prior to COVID) because she had so much fun with her friends at the games last year. I am sort-of hoping that the season will be cancelled so my mom isn't torn as to whether she should go or not. I really wish you had a crystal ball so you can tell us what to expect and what to do! lol
  17. That wasn't so bad. Approximately 29 hours in the hospital in a private room and all I had to do was drink as much water as possible and shower half a dozen times. The goal being to rid myself of the radioiodine I had been given at the beginning of my admission. This "therapy" is used to measure the iodine related to my papillary thyroid cancer and to determine presumably, whether in fact the tumors in my lungs are thyroid cancer which has moved, whether it's still lung cancer, or both. To say my life depends on the results of this finding and the interpretation of the follow-up gamma camera scans this Tuesday is perhaps a bit much. But my life expectancy sure depends on it, as well as my treatment life going forward. There's too many ifs, ands, or buts to present here, but suffice to say, my future, yet again, is sort of up for grabs. For the moment, however, I feel mostly fine. I'm back eating the foods that I love, after a 31 day lull when I was on the low iodine diet, so all is semi-back to normal. Being able to satiate once again does soothe the ravenous beast inside me. Nevertheless, there are bigger problems/possible solutions in the offing that M&Ms, Double Stuf Oreos and Entenmann's Marshmallow Devil's Food Iced Cake can really address. Still, if I'm going to go down, I can now go down with a smile on my face and a delicious dessert/snack in my mouth. In a way, I'm back on the precipice. Are the tumors in my lungs all lung cancer, which has previously led to my being given a "terminal diagnosis/prognosis: "13 months to two years" back in late February 2009 or are they papillary thyroid cancer, stage II; not terminal, and not just treatable, but curable? Or are they something in between, as yet undiagnosed? Maybe I've developed new tumors? Maybe I'm to be diagnosed with a third type of cancer? Maybe, maybe, maybe. That's how I have to roll for the next few weeks (thyroid cancer) and the next six weeks (lung cancer) when I will have the usual upper torso CT scan of my lungs, the first one I will have had in over five months (all my lung cancer-related treatment was stopped while we addressed the thyroid cancer). Perhaps in mid-July I'll know the "end of the story" as radio icon Paul Harvey used to sign off; "Good day!" For now, all I can do is wait and not "smoke em if I got 'em" but "keep my powder dry" and "keep my eyes on the prize." It's really no different than pretty much how I've managed to live my life since I got the diagnosis 11 years and over three months ago. Although, oddly enough, it feels different than it did before as if I didn't have as much at stake then as I do now. Almost as if this is my last chance to catch a break, especially considering that living nearly a decade past my original prognosis, I've already received a lot of breaks. Somehow, though, this medical-diagnosis-to-be conjures a kind of inexplicable finality. I don't want to go back. I want to go forward. Unfortunately, which direction I'm headed is out of my control. The endocrinologist and the oncologist will tell me whether I "Return to Jail" or "Pass Go and Collect $200." They will be monopolizing my future and in so advising, will indirectly determine my covid-19 risk as well. Will I be visiting my healthcare provider/facility regularly for treatment and possibly exposing myself to the virus(which would be a major complication for a patient like me: over 65, with lung disease and a weakened immune system) or will I be able to live my life without any of the life-ending-type fears I've had since 2009, and the world has had since the first quarter of 2020? So even though I don't know for sure that my life is at stake, I think I can definitely say that my living is. Will it be cancer-centric or not? Either way, I'll live with the outcome. The only question is: for how long?
  18. Last week
  19. I've been reading about the mutations appearing in my husband's NGS test results so far and wondered whether anyone else had experience here. One of the areas involved the TP53 gene and I noted this: "Avoidance of exposure to radiation therapy is recommended, when possible, to reduce the risk of radiation-induced cancers." His doctor recently advised radiation either in combination or before/after his other treatment. This has me wondering. Also in the report was this: "Mutations in TP53 may increase resistance to ionizing radiation therapy." I'm trying to resist Googling our way through this but sometimes it's hard.
  20. I haven't been on here much in the last few months, maybe a year. Work kept me much busier than usual but I *think* that is going to finally level out now that we've hired a new director and a couple of additional consultants. I also find it more difficult to break away from my work when my daily commute is now just a walk down the hall. I'm fortunate - and I know it - because I've been able to continue working without interruption. My employer has offices in CA, FL, NJ, OH, and TX and all of our offices were closed through May. They continue to encourage us to stay home through June and to come back at our new pace. Now I have to figure out what this new "new normal" looks like for me. When do I return to the office? Should I return? When can I go see my parents? I know that we don't have a crystal ball but I'd love to have an idea of what's next. I take an annual beach trip with my girlfriends in September but I'm beginning to think that won't happen this year. Two of my friends have jobs that require them to interact with people all day. Even if I drive to our destination, they will all be coming off an airplane and possibly exposing me. I know the beach will still be there next year but this is one of those trips that I look forward to all year. I see Super Doc in a couple of weeks and Super Pulmonologist in July. Hopefully they'll have some thoughts on all of this. Until then, I'll continue to stay at home. Ugh. Please stay well, friends.
  21. Tom Galli

    First Time Out

    Today, I ventured out of the house for the first time since March 2nd. It is 86 degrees, no wind (reduced pollin), and I’m sitting in a lawn chair in my front yard overlooking a verdant green cul-du-sac. There is hardly any noise except for the birds and what might be the first chirping of cicadas. This is supposed to be a loud summer. It doesn’t sound that way yet. It is the dinner hour for most so the quiet stillness is expected. Still, it is abnormal in my experience. I read a news piece that Rush Limbaugh is having a tough time with first line treatment. Lung cancer is the great leveler. King or surf, prince or pauper, everyone gets the same stuff. Most of us don’t get celebrity attention. I’d venture most of us don’t want it. Can you imagine having to get all gussied up for an interview two days after an infusion? No thank you! But Rush is notable in some circles and his plight (the stuff we all quietly deal with) somehow becomes newsworthy. On reflection, I can think of a number of notable persons among us who ought to endure our “plight”. If they did, I bet the lung cancer world would be vastly different. Did you know Hope Summit alumni are having a Friday zoom-meeting. Let me know if you are interested and I’ll ensure you get an invite. It is great fun. No news from me is good news. Stay the course. Tom OBTW—am well socially distant. Closest thing to me is a male cardinal who is slightly pissed off with my intrusion!
  22. Earlier
  23. Hi. My husband was just diagnosed last week. We knew only 1 person with this type of cancer and he lived for 8 months from diagnosis to death. Needless to say, we are devastated. It's extensive stage. Mets on his liver, adrenal glands. Nodule on his kidney was indeterminate. Still waiting for MRI of head to be scheduled. He did have a ct of his head in July for a head injury and nothing of significance was found at that time. We're praying no brain mets. PET scan scheduled end of week. Chemo should begin next week regardless of these test results. We have radiation consult tomorrow. No clue how long the set up will take to get the concurrent treatment going. I believe the 1st line treatment will be carboplatin + etoposide + tecentriq. I was recently reading combining the 3 drugs is showing a little promise in longer survival. I hope he does well. One can only hope for the best and that he doesn't get too sick from the treatment. I don't want to be here, not sure if I'll be back----Just looking for any sort of hope and if anyone would be familiar with a clinical trail should he not respond to treatment. He said he would be open to it, but wants to go conventional route first. We are located near Philadelphia PA.
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