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  3. Thank you very much , I will try my hardest to quit ..
  4. Johnny, I had VATS robotic surgery - lobectomy. They removed 1/3 of the upper left lobe - stage 1B. I also had a wedge resection on the lower left lobe that turned out to be in situ cancer - stage 0. I had an air leak which caused some discomfort. Other than that, no complications so healing might be different for you. Just try to be patient with yourself. I still have numbness on the left side of my chest and sometimes it's painful. I think it might be scar tissue. Paula - I still hear air when I am breathing deep or talking for an extended period of time. I never had that before either. I'm wondering if it will go away with time. A thoracic surgeon told me that we only use 22% of our lungs. I didn't fact check that, but that's what she told me.
  5. Hello my Fellow ALKies- The GO2Foundation.org is hosting a free Teleconference with the leading ALK Researcher at Dana Farber. Here is the registration link! https://zoom.us/webinar/register/f89a7fa9964a0461cde7dc3c8da9331e
  6. Johnny I had VATS “keyhole” surgery. It sounds like you had a thoractomy or open lobectomy surgery. Thoractomy surgery has a longer recovery time and the potential for more issues longer term. I like you perspective though. Hey ho we are still here!
  7. Best wishes. I smoked for 54 years and up to two packs a day for the last 4 years - most of them burned up on their own though while I did crafts and stuff. Since going on a trip May 27, I am down to two packs a week and vaping more, not that I have found a product that is satisfactory. Oh, and I rarely inhale the vape since it’s not necessary. If you haven’t made a change, think about it. Bless you.
  8. Bingo Barb...PDL-1 expression @ 90%. I really think the scientist who named Programmed Death (PD) should receive some kind of reward. I love thinking the drug lines up all the cancer cells and says: "prepare to meet your maker at 0900 hours!" Stay the course. Tom
  9. I will Paula. It’s a relief to know that this doc has been on top of things all along. And we’re all leaning toward the inhaler being the culprit so give me infusion #3 and let’s destroy this uninvited guest.
  10. Pulmonologist put me on an inhaler Tuesday and seems like I am having a side effect to that-vertigo. Called both the pulmonologist and the onc's office to figure out if its the inhaler or the Imfinzi. It's now a process of elimination, stay off the inhaler and see if the dizziness subsides, if not it's the Imfinzi. BUT, as I was speaking to my favorite onc nurse, I asked her why I can't get a PDL # so I know if this is all just a waste of time. Lo and behold, that test was done way back in December from the biopsy, its is 90% expression-YAY!!! I was under the impression that the PDL was part of the biomarker test-I was wrong and could have saved myself months of mental anxiety if I would have asked the correct question. And they probably told me this way back then but my head was spinning with the dx and I probably let it float right over my head. Live and learn. Have a great holiday weekend.
  11. Hi Johnny, I hope things get better for you. I had a open lobectomy of the upper left lung in Oct 2018. I’m not sure my situation is the same because I still have the smaller portion of my left lung. I do still have numbness and weird feelings under my ribs on the left side. My breathing is getting better but it’s weird I really hear air breathing in and out which I don’t remember doing before. I started off trying to reach 5000 steps a day and increased to 10000. I’m now doing the program c25k with hopes of just getting through it. I’ve gotten to week 5 and started over. I guess I’m trying to say keep pushing yourself but don’t overdo it. I just want to get some of my strength back th I lost with radiation, chemo and surgery. Take Care Paula
  12. I’ll ask the doctor when I go , ty good idea .
  13. What surgery did you have, that’s amazing that you can do all that, did you have keyhole? They had to go in through my back as there were many complications ☹️ Hope you keep recovering well 😊
  14. I think as I’m 59 and the whole of my left lung has been taken, I should understand it will be a slow process. I’ve many problems twisting and bending and my surgeon has intimated that he might have to do some corrective surgery in a couple of years. My right lung has expanded and it is pushing on my tracea which has its own complications. Hey ho I’m still here 😊
  15. Tom...you are a blessing to us. You show us to fight back. Spanner- keep asking your questions here. It's amazing what help, guidance, and hope can be found from those here who are going through the same issues. Hugs and prayers.
  16. Spanmer, Welcome here and very sorry to learn of your dad's dx. You asked about pleural effusions and if they are an indicator of poor treatment outcomes. A pleural effusion is a buildup of fluid between the outer tissue of the lungs (pleura) and the chest wall. This fluid results from irritation and causes include: congestive heart failure, pneumonia and cancer malignancy among others. They are not necessarily and indication of treatment prognosis because removing the irritation (addressing malignancy) may stop the effusion. I recovered after two recurrences with only chemotherapy as my treatment method. I was found to have no evidence of disease (NED) after my first post surgical recurrence from 6 cycles of Taxol and Carboplatin. But the cancer recurred and again 6 more cycles of chemo knocked down the tumors . Unfortunately, my NED stage only lasted about 6 months and I needed precision radiation to finally eliminate my lung cancer. So chemo works, and my chemo recipe was 20 years old. New chemo therapies work much better and actually have a chance of eliminating tumors. Here is a next treatment possibility (read the Immunotherapy paragraph). Your dad's doctors may want to explore combining conventional chemotherapy (pemetrexed-platinum types) with another course of Keytruda. As for recovery, I'm a 15+ year survivor of NSCLC (squamous cell) and if I can live, so can your dad. Stay the course. Tom
  17. You can ask your doctor to also read and interpret the scans. You can also bring them for a second opinion. I did.
  18. I’m sorry to hear about your dad’s diagnosis. My father too had Stage 4 lung cancer many years ago and I was recently diagnosed. It is a really difficult disease where hope can be elusive. I don’t have any direct experience with the issues your dad is facing but others may have. Hang in there.
  19. Hello all, I wouldn’t normally post in forums, but I’m starting to loose hope for my dad. He was diagnosed with stage 4 adinocarcinoma about 5 months ago. He had it in the bone and chest wall too. He had keytruda over 3 months and 5 rounds of radiation. The cancer shrunk by 40% and no sign of bone Mets which was amazing. Then he developed full pleurisy of the lungs and got put on steroids with some results but still left lung full of inflammation. They also took him off keytruda so he could get over the inflammation. Went back today and they are telling him he won’t be going back on keytruda cause it’s not working. They suspect it was the radiotherapy that shrunk his tumors and now he has plueral effusion bone Mets again and cancer in the renal gland. They want to try him on chemo but he’s not keen on the idea. I hear that once they develop plueral effusion the outlook isn’t great. Can anyone confirm a similar case with recovery with chemo? Many thanks.
  20. John, I take only 2 supplements: a multivitamin and 1,000mg of Magnesium daily. The latter is to offset very low magnesium levels in my blood, another side effect of too much chemo. I don’t have any experience with the supplements you mentioned. Stay the course. Tom
  21. To answer your question, I now recall that I took acetyl-l carnitine during and after my chemo. Don't know it it helped with the neuropathy or not- maybe it would have been worse! I've been on fish oil with omega 3 for years. I never thought of it as a remedy for neuropathy, but again, maybe it helped my taxol toes recede. I don''t think any of these supplements can hurt, and if your neuro recommend them they're probably worth a try.
  22. Hi Johnny, I think Curt and are just a couple of weeks apart on surgery. I am determined to increase my cardio and endurance. I started playing tennis a couple of days a week - no matches just yet. I definitely notice the difference in my breathing and limitations. I was just saying that I should go for a series of lessons to further develop my skill so I won't have to run so much! It's getting a little better each week. I've added intervals...1 minute walk, 1 minute run for 2 miles on the days I'm not playing tennis. I started a free weights class 2 times a week. At this point, I am just so happy that I can do all of these things. My surgeon told me that after 12 weeks I should be back to normal (not sure what the new normal will be). So, since it's been 9 weeks tomorrow, I still have 3 weeks to go.
  23. Banna, I feel like we're in the same place. I had an upper left 1/3 lobectomy March 22 - no radiation or chemo. My first scan will be in September. During the day I'm able to adjust my thinking when I begin to experience anticipatory anxiety about the scan. But, I wake up at night a couple of times a week in disbelief that I had lung cancer and then wonder if it will come back. I lost two brothers and one sister to cancer. So, out of 6 kids, 4 had cancer the other 2 did not and are alive. I sort of feel that's in my genes. I am working toward resuming my pre surgery fitness routine. I eat healthy, but then again, I did that before cancer! I think we just do our best to take care of ourselves. Katie B. I loved what you wrote, and I couldn't agree with you more.
  24. Hi Johnny. I had an upper right lobe lobectomy three mo the ago. I am very focused on regaining my lung capacity. It’s been slow but I’m getting there.
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  26. Hi Linda- Yes, the Insurance is a real problem in our community. It’s a totally unnecessary stressor! It’s not atypical for this type of denial. Aetna just lost a big lawsuit in Oklahoma over radiation. Your doctor will need to initiate the appeals process. Do not sign any financial liability paperwork today at the hospital (that’s what my clinic tried). Just say no thank you! You can also file an appeal through the HR department. If the employer is self insured, they may authorize an exception if they are paying the bills. This is also known as an ASO contract (Administrative Service Organization). Insurance companies are notorious for denying newer services that doctors recommend. If they do issue a denial then they must provide a comparable alternative. Its going to be a frustrating process so the more help you can get from HR the better off you will be. Ask for an insurance case manager to be assigned to you from the oncologist team. This will help you from getting random answers (and not necessarily correct ones) from the main customer service line. Keep us posted!
  27. Hi Joe- Those are legitimate questions. I worked as an insurance executive for a number of years however, I don’t know how the coordination occurred with the clinical trials. I would start with the hospital finance team first. Then I would schedule an appointment with your team pharmacist ( you should have one assigned directly to you). The PharmD might know. This isn’t the first time the question will have come up. You may want to ask the Insurance Advocate at the employer. These individuals are supposed to be experts in understanding the “Specific Plan Documents” This explains the employer coverage You will need to understand if the policy is ASO (Administrative Service Organization) or Fully Insured (meaning the health plan manages the finances on a profit loss basis) ASO contracts are better as the employer has the fiduciary authority to make coverage decisions. The Insurance company is a resource of last resort. The people who are answering the phones only know how to give scripted answers. Let us know what you find out. Be patient- the Insurance is worse than the disease!!! Michelle
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