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  2. You Katie Brown are one amazing human being!!! How I wish there had been someone like you around in 1991 when my father was diagnosed with and died 5 months later of lung cancer. You have truly made a difference. I now am going through this a second time only this time it’s my Mom. The difference in the information and support now is astounding. Thank you from the bottom of my (breaking) heart.
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  4. 15000+ posts...congratulations!! Make sure to treat yourself! You deserve it! Thank you for all you do for us!
  5. Hey Irene- Wer’re hear for you when you’re able to update us. Hope the procedure went well today. Michelle
  6. Wow Katie!!! Bless you for everything you have done and will continue to do.
  7. I am so very sorry to hear about the pain your are having because of neuropathy. I am hoping there is something that will help you soon.
  8. Looking forward to meeting with the new doc and get everything straightened out. Thanks.
  9. The post diagnostic worry and haze is tough. Try to enjoy life now. Save the worry for scan time. I haven’t figured out how not to worry when those come around.
  10. Hello Barb. I was Stage 3B. The tumor was in the apex of my right upper lobe. Pressing on nerves going down my arm, and onto my chest wall I had chemo and radiation, it shrunk. I then and had my right upper lobe removed and more chemo after as was planned. That was finished in 1998 and I am still here. Best wishes , keep us posted. Donna G
  11. Hi Barb, Like Paula, I was also diagnosed 3B because not only the tumor had spread to lymph nodes but also to all over right lung. I was told by everyone - my med onc, thoracic surgeon, and then later radiation onc (I had post surgery radiation treatments) - that the surgery wouldn't have been an option if I wasn't so "young and healthy". So I'm thinking how healthy you are does count into their recommendation of whether or not present a surgery as an option for you. I'd recommend a consultation with a kick *ss 😀 thoracic surgeon - good luck to you... MB
  12. Due to all my cancer treatments for metastatic kidney cancer, luckily, most of my tumors are now gone. I still have to stay on my targeted therapy cancer treatment (Votrient) for now. My question is, now that I am left dealing with painful neuropathy in my feet from all the cancer treatments, are there any patients out there dealing with this kind of pain? If so, have you found any medication, supplement(s), or therapy that help to calm down the foot pain? Currently I take Gabapentin, but it's not helping at all.
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  14. Hello to my TKI peeps- Now that the nice weather is here (sort of), thought I would pass along my latest accidental discovery. There’s a bunch of potassium in watermelon and it seems to help with the edema. Onward. Michelle
  15. Hi there Banna- Just wanted to drop in and say hello. It’s perfectly okay to feel like a basket case right now. None of us ever expected to join this club. In time you’re confidence will increase. I know that’s hard to imagine at this point however there are better days ahead. I’m the meanwhile, do what you can, laugh, sing, live. Michelle
  16. Thank you Tom. I was just such a shock and panic set in. I really need to focus on the positive
  17. Curt, thank you soooo much for this! I am a basket case.
  18. Good, let’s get the ball rolling... prayers for you!
  19. Hi Jo- You’re doing a great job! There are big guns on the team at UCSF. You may want to check out the Lung Cancer Living Room on YouTube ( Formerly the Bonnie J Addario Foundation now Go2Foundation). You might consider attending in person. It’s a wonderful organization where you will feel supported and inspired. Have faith that you are doing all that you can. Michelle
  20. Hi Jo. I’m sorry to hear about your husbands diagnosis. My father had Stage IV lung cancer and I was recently diagnosed at Stage 1. My dad liked fruit smoothies (we’d hide veggies and protein powder in them) while he was undergoing treatments. Milk shakes also. I hope his symptoms improve and you get some of of those bright days you are hoping for soon.
  21. Jo, It is amazing that your primary doctor took advice from second opinion doctors from different hospitals. Telling my doctor another doctor says he is wrong? Whoa. And them listening? Double whoa. So you've got a great team with backup data. An integrative oncologist may help. I'm seeing mine for the first time next week. And always know that people are reading your entries and hurting with you. I'm glad to be of any help. With an aching heart, Joe
  22. Isabelle, I've been following this thread and am glad to hear that you have the appointment setup. KatieB is absolutely correct that you never want the system to control your care or treatment. I hope this Pulmonologist will be the right one for you. For my part it was a pulmonologist that noticed my nodule on a CT Scan taken months before I saw him for something unrelated to cancer. He was sharp and pushed everyone else in the "system" to get me treated and I'm so glad that I came across him. I wish the same for you. Please keep us updated. You'll be in our thoughts. Lou
  23. Thank you, Tom. I am grateful to you & the many others here who are thinking & praying for me. I'll post here as soon as I can after it's over. Irka
  24. Update: have an appointment with a new Pulmonologist on the 29th, so will go from there.
  25. Thank you all for your kind words and encouragement! @BridgetO: On palliative care, he was just referred. Our first appointment is at the end of next week. Looking forward to some new eyes and approaches on the symptoms!! Although I do have to say his oncs have been very engaged, listen well and are active in looking for solutions and open to alternatives (we feel very fortunate on this front). @KatieB: I might not have a precise understanding, but he had a CT scan to check on his lymph nodes due to the swelling. That scan was earlier than intended for the status check. Dr talked about the pseudo-progression scenario, but felt the growth was way too aggressive (doubling in 10 weeks) for that to be the case. We also discussed whether we should add chemo vs switch and they recommended in his current state health that it would be too harsh on him to do both. There are resources, but the social worker and our nurse navigator don't seem to play that overall role (the onc himself has been the most involved in all the symptoms - along with the radiation onc - as a team). I am hoping the palliative team will step in here now and provide more symptom support overall. @Joe: Thank you for support and hope. Just writing and reading the responses does make me feel less alone! @Michelle: I am very much trying to be that advocate. Talk about feeling inadequate!! What a roller coaster! We are at Kaiser in Northern California. We did engage UCSF for a second opinion so we do have a Dr there that we met with. We now send her all the reports and results and she reviews (sometimes talking to the UCSF tumor board) and sends her findings and reports to our primary Onc. Surprisingly, they seem to be collaborating pretty well (For example, UCSF recommended we evaluate putting in a stent to help his cough & swallowing - so we will have a consult with a gastroenterologist (hopefully soon). It is all just overwhelming right now. Lot's of prescriptions trying to address all the symptoms. Mostly I just want to help make his days as bright as possible and encourage optimism of treatment helping, but that's a tall order right now (and his unwillingness to eat is making all worse). Thank you all again for being here and letting me release! Jo
  26. Tomm, Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7 He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME! THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...
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