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  2. I totally understand how you feel. Once you get a cancer diagnosis of any kind it changes you. I am so happy to know you are doing so well and caught it early which is so important for our survival.
  3. Nicole, Has your dad ever been tested for sleep apnea? This order is normally diagnosed by a sleep study. This could explain his breathing while sleeping difficulty. Ensure someone alerts the pulmonologist to this possibly. Stay the course. Tom
  4. "A market research company has asked LUNGevity to share a paid survey opportunity for patients within the US with Stage IV lung cancer. Those who qualify and complete the 35-minute survey between June 21st – July 12th will receive $60, paid via check. To take the survey, click Please note: if you do not complete this survey in one sitting a unique link will be sent to you within 24-48 hours to continue where you left off within the survey. This will only come if you fill in your address information and I have the email to send you the link. The email will come from Elizabeth Lawson ( You will not receive payment for completing the survey more than once."
  5. No, they didn't focus on the cancer. He has a central lymph node that appeared the same, no worse/no change. The focus was on the scarring and he has fluid in his lung. He is going back to the pulmonologist. It's the strangest thing...he has no energy and cannot "get his breath". He says he gets short of breath and then feels panicked and that makes him more short of breath. It is worse at night and in the morning...I guess because he is stirring around more??? It takes a lot out of him just to take his shower.
  6. Nicole, OK! Scan and some scaring left from radiation. Did the scan show no evidence of disease -- NED? Stay the course. Tom
  7. Mally, Right! Anxious time to next scan. Remember, lung cancer is persistent so keep your game face on. The 6 month scan interval is a good sign but it is just a sign. Most important is to be doing something you enjoy while surfing your NED. You got the promise of treatment -- extra life. Now have fun! Stay the course. Tom
  8. When i was first diagnosed they said it was at a curable stage and then the results after surgery showed clear borders but some lymph nodes showed positive so then chemo followed so im thinking because i was clear in my ct scans from neck to pelvis that there was no new growths from the lymph nodes but like everyone its an anxious time till next scan Sent from my SM-N920I using Tapatalk
  9. So, my father has completed this last phase of treatment. He had a CT and has some fluid and lung damage due to the radiation. Lots of lung damage. His next CT is in September with contrast. He is going to see his pulmonologist to see about a plan for the lung damage.
  10. Kaly, Your brother's report is not a good one. But, Squamous cell does respond to chemo. If it didn't, I wouldn't be here. With the extent of metastatic disease, it is hard to see how radiation could be used except to moderate pain as palliative care. And, Squamous cell does not respond to targeted therapy. This treatment is only available for a percentage of those with adenocarcinoma NSC lung cancer. But, there have been recent advances in immunotherapy for Squamous cell folks. Ensure your brother asks about immunotherapy at his next doctor consult. Stay the course. Tom
  11. Vicky, How about that! Great report. I'm using a phone to respond. Helping my daughter with her brain radiation so I'm struggling with this small keyboard. But the forum format on my phone starts with one's first post. I therefore took time to read yours. Interesting, indeed. So you are on the NED road and what does one do with the gift of NED? Stay the course. Tom
  12. Yesterday
  13. That's great news, Vicky!
  14. I'm on a 90 day scan cycle. Super Doc says when I go 2 years without a recurrence, he'll move me to the 6 month cycle.
  15. Happy to hear the positive news, Vicky! Way to be an overachiever!!! I hope that this positive news will help you and your husband to look forward to the future. Best wishes!
  16. Mally, my last scans we're 6 months apart however the most recent scan showed a new area of concern so I am back to every 3 months for now. I had been NED for 26 months on a targeted therapy drug, that is the reason my doc extended the time between scans. I think maybe 6 months might have been a little too far apart. I am only speaking from my own experience and I know insurance dictates the number and frequency of scans allowed.
  17. Hi all...It's June 21, and I have an update. My oncologist took scans of my brain an lungs. The cancer tumor on my diapham has shrunk for 12 centimeters ti about 1 centimeter./ All but one of the lesions has disappeared from my brain and the radiation oncologist says my progress is further ahead for the amount of time I have been in treatment...he called me an overachiever. I have 2 more chemo treatments and will be able to see what the doctor wants to to do. Thanks for your continued support. Vicky Hey everyone, Thanks for all the support. I go for CT scans on my head and lungs on June 1st to see what, if any, good the radiation and chemo has done. I got the markers back and do not qualify for Keytruda. They require 50 in the PD-L1 and mine came back with a 4! Figures! Anyway. the doctor is still pretty positive. I just need some good news from the doctor like some damn procedure has worked.Thanks for listening all...hopefully I will get some good news soon. Vicky
  18. Kaly, I'm sorry that your brother's results were not what you had hoped. I pray that his oncologist can suggest additional treatment options.
  19. Got the scan results, feels devastated . Looks like chemo is not working .primary mass size increased from 10 cm to 12cm. Supraclavicular, mediastinal, abdominal lymph nodes sizes also increased and new nodes also found. Is this the reason for not able to eat?Tomorrow is Oncologist appointment to know the future plans. Also I read some where squamous cell doesn't respond to chemo, is it true? If chemo doesn't work what are the other treatment plans?Immunotherapy is very expensive in India. Since no mutations found no question of Targeted therapy. I asked my brother to ask doctor to insist on radiation but I doubt doctor will go that route. (Last month when I talked to him he said he suggest if it spreads to bones /brain to manage pain) So confused, scared. Thanks Kaly
  20. Thank you Tom and Michelle. His planned 6 chemos are done and waiting for the scan results which was done yesterday. Hoping for the shrinkage.Reason I am more worried is he was absolutely fine until last week other than 2-3 days after chemo infusion.(His last infusion was almost 3 weeks back) From last week he was very fatigue and not eating anything because of pain. Since I was not with him I am not sure where he was feeling pain exactly yesterday he clearly mentioned that it's painful at throat and rib cage when he is earing. This worries me a lot. Unfortunately he can not take ice cream as he is diadetic as well. Will update as soon as scan results come. Thanks kaly
  21. Apparently the WBC and neutrophls were from the Nulasta (sp) administered two weeks before. I didn't know it was still effective that far out! Dad got his last high dose chemo today. Not sure what happens next. Doctor said he has a "few cards in his back pocket" to play for future treatment but that we will see him again in 3 weeks and do more scans. Dad seems to be doing well. Still down 40 pounds from when all of this began but we're in it for the fight. I've considered taking him to Duke for a second analysis but not sure if that is necessary. He's been going to work half days for the past month and will be retiring the end of next month (40 years in civil defense). Hoping he makes it out of this with good news. Thanks all!
  22. Last week
  23. Congratulations Mally! Have no idea. Oncologist did pelvic and abdominal scan before chemo. Nothing there. Yay! At one time said scan in the middle of chemo and now talking scan at the end. I really think they reevaluate and make decisions based on what they're seeing as treatment progresses. Sounds like yours thinks you're doing pretty good. Just M. Sent from my SM-J100VPP using Tapatalk
  24. Hi Mally, Yay for NED! I'm on a 6 month scan schedule.
  25. Hi Kaly, Has he looked in to drinking some Ensure? It will provide needed nutrients. Its not bad when mixed with ice cream into a shake. The ice cream would also provide extra calories and nutrients. It might be easier swallowing a shake, and would help stop the weight loss. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk
  26. Cindy, I am seeing your post for the first time and my response may not be timely, but I have some information on "adult" coloring books. I actually took a class on in at a local Cancer Survivorship Conference I attended with my mom last year. The person who taught it teaches art therapy and provided a lot of research to back up what she was saying. That being said, either coloring is for you or it's not! Her message was that coloring can be very relaxing for some. I personally love "adult" coloring books but never felt relaxed after coloring. Her explanation was simple - she suggests not coloring the fancy coloring pages that are of traditional things (like animals, flowers, etc) for a few reasons...1) many times the coloring page is too involved and you are unable to complete the picture in the time you have to color, this can cause stress because the picture is unfinished. 2) When we color traditional things (like animals, flowers, etc) we tend to stick with the colors we have pictured that are associated with the thing (coloring an elephant gray, water blue, grass green, etc). This does not allow our creative juices to fully flow. So she suggests coloring Mandala shapes (google Mandala coloring pages and a bunch will come up free to print). Mandala shapes are symmetrical, which our brain likes, and can be quite simple. The instructor's point was that simple Mandala shapes can be colored in as little as 10 minutes and there are no "pre-set" beliefs as to how we should color a Mandala; which allows our creative juices to flow. I bought a small Mandala coloring book and do find that it is much more relaxing than the in-depth, fancy coloring books. I actually do feel relaxed after coloring the shapes and can do it in about 15 minutes, which is about all of the time I have to relax! Hope this helps a bit, I found the information she gave very interesting.
  27. Jeffrey, My mom had her upper right lobe removed in January 2016. I've been reading your journey so far through this post and hear some of the similarities. It took her awhile (a month or so) to feel that she "recovered" from the surgery enough to resume some of her hectic daily schedule. After surgery, she had quite a bit of fluid built up and had to have some of it removed at one point. She still has some fluid around her lung from the surgery but it is slowly decreasing now on its own. We are told if may never totally go way, but not to worry - I would still be sure to have it checked as Tim said. Even more than a year later, she still has pain where her incision was, she is told that is normal due to all of the trauma that went on in that area. I wish you the best in your healing process and hope all goes well for you. Take care
  28. Thinking about your daughter and you, and praying for only the very best results.
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