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  1. 2 points
    Opal

    Durvalumab

    Hi DFK, Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt the needle. Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way. Take good care, Opal
  2. 2 points
    Grahame Jelley

    Durvalumab

    Thanks Roseann great post on here and most helpful . Good to hear various options port versus peripheral vein This was second go at Etoposide and Cisplatin I also had 29 radiation. 2009 I had seminoma (testicular cancer) and had Cisplatin daily for 5 days eveyb4 weeks x 3 cycles , Etoposide and Bleomycin . I found that regime much more challenging I must say. Quite surprised how I got through the last 6 weeks with as little side effect as I did. We imagined much more significant disability . now we wait and see what happens with Durvalumab Have a great week grahame
  3. 2 points
    Sillycat1957

    Durvalumab

    Hey there Everyone, sounds like all is well in Durva land! Well Hells bells! Been dealing with a whole lotta lotta personal crap, and just not feelin" it. Just came round to see what's going on round here lots I see 😃 Welcome Grahame! 😃 I had the same cocktail as you Cisplatin/Etoposide Yuk! Eh! Concurrent with 31 daily doses of radiation, then onto Durvalumab after 4 wks rest. I too have a port, would not want it any other way, no siree. Everyone here has lots of great things to offer and will never let you down when you have a question or what not so keep coming back now ya hear! I had to skip Infusion #11, really upset me, seems I may have fallen into the 1% category of rare side effect of something called Uveitis? Another freaking "itis" that we as cancer patients have come to know all too well, well myself anyway. I have been complaining about my vision for about 2 months now. I was told to try eye drops or artificial tears. Which I would not, because a long time ago, an eye dr had told me never to use them because my eyes would become dependent on them and my eyes wouldn't make tears naturally. If that was true, idk. But I never used them only when I had hangovers LOL! To get the red out! Any way I have an appt to see an Opthamologistt on Wednesday. My eyesight is pretty important. I sort of remember Charles I think it was having trouble with his eyes at one point? DFK you will not be having Twilight to have your Port removed? With my level of anxiety I could not handle that! When I had mine put in I told my surgeon, the way it goes in, is the way it comes out, he said of course! I hope so. Tomm Congrats on still being NED! Opal there are a few tough cookies as DFK says at my Cancer Ctr that have their infusion like you did, Nope I could never do that, I have the worse veins and I cringe at the site of needles still. I like your comment about motion lotion, it works. You can beat me up, but ya can't keep me down! Roseann
  4. 2 points
    DFK

    Durvalumab

    Hi Grahame, Same here, had labs drawn every two weeks before the infusion and met with my oncologist every other infusion or once a month. But before I started Durvalumab (and chemo), my oncologist recommended I have a port surgically placed. I agreed as I have a very low tolerance to pain and needles. I have had no problems with my port over the course of the year. I was also provided with a numbing cream to put on my port before the infusions so I essentially did not feel the needle going in and being removed. They also drew all my labs from my port and if I needed a CAT Scan with contrast, again my port was utilized. I guess it's all a matter of preference if you want a port. I will have my port removed if my upcoming Scans are clean. Also, before I started Durvalumab, "someone" had to check if my insurance would cover the infusions and you should know ahead of time if there are any costs that you may incur. Durvalumab is a costly medication that even with insurance , you may or may not have a co-pay. If finances are a concern, they have staff, be it office staff or a Nurse Navigator that can provide you with organizations that may assist with costs. I also met with a Nurse Practitioner before I started who instructed me on what kind of drug Durvalumab is, what the goal of Durvalumab is and what side effects the doctor would be monitoring and I needed to report. I was never on a regular schedule for Cat Scans but because I had some problems with increasing shortness of breath and vocal chord damage, I did have a total of four Cat Scans over the course of a year. This is a lot to absorb in addition to your recent diagnosis as well as your recent completion of chemo and radiation. Take care of yourself first, ask questions of your healthcare team and keep a positive attitude as much as you're able. It's a tough road we're all on but doable when information and support are within reach. Take Care, DFK
  5. 2 points
    Tomm

    Durvalumab

    Grahame.. the standard here is 26 infusions in 52 weeks with blood test before each infusion. Most get at least one CT every 3 months. They need to test to see if there is progression or something new and if so then no more infusions. They watch your BUN and Creatinine close and ALT, AST and TSH. Blood test results 15 minutes, ONC consult about 15-20 minutes then get a chair. It takes about 30 minutes to get the meds and then 1 hr. for the infustion. It may be quicker where you are but the place I go does up to 200 people a day with chemo etc. I bring my big Ipad with ear phones and a big lunch. A lot of us have a port..
  6. 1 point
    Zimbabwean born, New Zealand resident european male Family Physcician recentlybdiagnosed NSCLC Satge 3B . Just completed radicalnradiotherapy and chemotherapy with Cisplatin and Etoposide. Await start Durvulamab
  7. 1 point
    LouT

    Hi I'm Gessica

    Gessica, Tom is absolutely correct about the nature of diagnosis as well as this forum. That aside, the important thing now is that your father receive a full set of tests that can provide both a strong diagnosis as well as a solid treatment plan. My coaching to you and your family now is to write down everything you're told, consider the data and ask all the questions you may have about what was found, how it can be treated, alternative treatments and potential outcomes. You need, or someone, needs to be an advocate for your father at this time. It is dizzying to hear that you have cancer and often the questions you want answers to the most don't come to you until you are alone in your bed at 3am. So, take notes, ask questions and don't let anyone give vague answers at any time. We always need to be participants in our treatment and not just passengers. Please update us as you learn more about the diagnosis, any genetic testing done as well as the treatment plan. There are people here with a wide variety of treatments and surely someone will be able to help you.
  8. 1 point
    Tomm

    Durvalumab

    Sillycat Roseann, sorry to hear you missed #11 .. I found this link that may be of interest to you. https://www.cbdhealthcentral.com/can-cbd-help-treat-uveitis/ ..you may find more info. if you search for cbd-uveitis. If you do try CBD try whole plant and not Hemp. What do you call the wife of a hippie? Mississippi
  9. 1 point
    Tom Galli

    Hi I'm Gessica

    Gessica, Welcome here. Lots of us experience delays in diagnosis. Then we suffer delays in getting answers from diagnostic procedures. Delay seems to be the nature of the lung cancer beast. Here is a summary of my lessons learned during diagnosis and treatment that may be of help to your dad. The value of this forum is access to people who know about treatment from a patient's prospective and that is important because few physicians have actual experience with treatments and the delay centered nature of our disease. We also have folks who care for lung cancer survivors and they may field your questions on how to help your dad cope. My advice: read in to our disease. Start here then ask questions on the forum. Stay the course. Tom
  10. 1 point
    Thank you so much for your reply Curt. I'm incredibly grateful for the advice and you're 100% right with what you said. Sorry to hear of your diagnosis but definitely grateful that they were able to find it at such an early stage. How is your treatment going?
  11. 1 point
    Opal

    Durvalumab

    Hi Grahame, I'm 3B same as you, mediastinal but Right lung. Also radiation and same chemo. I recently completed #26. Tomm's description of infusion was same for me. Yes labs were done each time before infusion. They watched thyroid. Actual infusion in chair was just about an hour. Other then pinch for IV I felt nothing. I only saw my oncologist at appointment after CT scans which was every 3 mos. Otherwise I saw nurse practitioner. Good luck to you. Opal
  12. 1 point
    Hello @CoachGessica I’m sorry to hear about your fathers diagnosis. My father was diagnosed at Stage 4 seven years ago. Unfortunately the treatments available today were not available to him. I was diagnosed at Stage 1 last year. I’ve found that treatment options and prognosis are VERY different than they were even just seven years ago. There is a ton of negative information on the internet. Here’s what you should know. 1) much of it is dated. 2) Five year survival rates are rates for people diagnosed five years ago. Many of today’s treatments weren’t available five years ago. 3) More cancer treatments have become available in the last three years than in the last fifty. 4) There is hope and affective treatment options. Being supportive of your father will depend on him and what he needs. It’s different for everyone. One week into diagnosis is still incredibly traumatic for all. The uncertainty and waiting is usually the hardest part. As a treatment plan gets put in place things will level out. There are plenty of people here going through the same things as your dad and others going through the same as you. We are here to help. Hang in there.
  13. 1 point
    Hello, I'm new to the group. This past week I found out that my father has the same diagnosis, also 3b. It's been very difficult not knowing how to comfort him for myself with all of the negative information on the internet. Just wanted to say that I'm really grateful for all of your posts. Any recommendations or advice would be greatly appreciated.
  14. 1 point
    Grahame Jelley

    Durvalumab

    Hi everyone I have had little in terms of information from oncologist about regime for Survulamab and presume at next appointment I will get some further information . Would appreciate your understanding of the typical regime and routine . It appears fortnightly infusions over 42 weeks ? from Opals post pre infusion bloods each time . I guess around an hour per infusion. Any other monitoring ? thanks Grahame
  15. 1 point
    Opal

    Durvalumab

    DFK I did not have a port. It was my onc's decision and I was good with getting a stick every other week. One in the hand for labs then in the arm for infusion. I'm a big sissy for needles too. I'm repeating myself, mostly from joy, but the lack of fatigue is most noticeable and I am so glad it's gone. I feel pretty much my old self pre Durva, pre diagnosis except for the extra weight. I never had a weight problem so it's a bit annoying. Any other questions, ask away I don't mind.
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