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SteveD

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  • City
    Amesbury
  • US State (if applicable)
    MASSACHUSETTS
  • Country
    USA
  • Gender
    Male
  • Status
    Lung cancer patient/survivor
  • Interests
    Wooden boats, oil painting, the outdoors.

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  1. Tomm, No I don't know what the PDL-1 is. I didn't get a copy of my labs last time either. Hope to have a conversation soon with my doctor. What I do know is, I've had a bad reaction to this drug, and/or, my body must be stronger to withstand this treatment.
  2. The facts are out there. 36% of those receiving Durvalumab had to suspend treatment due to severe "side effects." Some studies put the number upwards of 42%. Pallative care, aka pain killers, does not appeal to me. Occasional use may be OK but the need for ongoing "pallitive care" is self-defeating, in my opinion. If I am one who cannot tolerate the drug, so be it. I'll wait to speak to my chemo doctor.
  3. RonH, That't what I'm thinking now. A further break to gain strength before I decide whether to forge ahead. The big question, is it really worth it if I am to be so miserable?
  4. Had my first Imfinzi treatment on Dec 3rd. My reactions were at least ten times worse than chemo (Carboplatin and Taxol) Fever, pounding headache, sinus neck and eye pain, joint pain, fatigue. I must reassess whether I can tolerate this for a year. One week later I am barely getting back to "normal" . While I have been hopeful I might regain my energy after chemo ended, unless there is a way to moderate this immunotherapy I think I'm going to have to stop it.
  5. My first Imfinzi treatment was Thursday after getting a good result from the CT/PET scan on Tuesday which showed no unusual activity. It was very cool in the treatment area as the maintenance crew worked on the heat. The infusion took a lot longer than expected, so when I got homeand started getting chills I thought that must be the reason. Wrong. My temperature went up gradually to 100.5 F before I climbed into bed. My head was pounding later as I woke up with sinus, eye and neck pain. About 4am I took a tylenol and again at around 8am, then. My temp had come down. I'm not sure how to asses this since my temerature tonight is again on the rise. I'll just have to hang in there and see if I can tolerate this treatment that they say must last a year.
  6. Well the CT/PET scan showed no activity in my body other than "normal" inflammation caused by the radiation treatment that ended Oct. 28. It might have been problematic for me to determine what a 3.3 degree of activity meant at the targeted upper left lung location. Both doctors were upbeat with the results.
  7. Iggy, It sounds like you and I are on similar paths. I just had a month long break from radiation and chemo and tomorrow I will learn about the changes via the CT/PET scan results. Unlike you, I have developed rather severe shortness of breath and some pain at the radiation site. I can only hope that a lack of exercise is a factor and I may regain some energy when I resume a more active regimen.
  8. Funny I should come across these posts today. I had a PET/CT scan yesterday to show the chemo/radiation treatment results from September through October. Sheilds, who does the scans, usually posts the images and the report. I was eager to see the report today before my doctor's appt. tomorrow but it wasn't available. While the full body imaging is probably too large, the previous diagnostic report was made available within a few days. I am fortunate to have doctors that will go over the details and answer any questions I have. When I read the last report online, it lacked the context and depth a physician could offer. What is very valuable for me is the access to the images, MRIs for example, from a few years ago and reports that document a timeline of conditions. As for me, I am not very optimistic as to the results even though I would like to be. I have been experiencing a much worsening shortness of breath and pain, or more specifically, an ongoing ache at the radiation site on my chest. So, as usual, anticipating the test results may be worse than the actual facts. The next step proposed a month ago is immunotherapy with Infinzi. We'll see. My appointment are with the Chemo doctor on Thursday and Radiation doctor on Friday.
  9. Barb, that is a very grateful Thanksgiving message. I am happy for you!
  10. Thanks. I have a CT or PET scan due for Dec 1st to see how the Radiation and Chemo went. Then the doctors want me to start the Imfinzi every three weeks. I am not looking forward to more fatigue and hair loss, but the results sound life-extending. I guess there is still an argument going on in my brain and body where I want to regain my physical strength and grow my beard back.
  11. Please excuse the duplication. When I tried to post this I got an error message, over and over again until I came back and saw the duplicates. Then, when I tried to delete the dupes, I got another copy!
  12. Where do they find these names! Perhaps I did not dig deep enough into the 2018 posts but, I would be keenly interested in any treatment updates with this immunotherapy regimen. I completed chemo and concurrent radiation therapy last week and I'm hitting a new depth of side effects now. That said, I hope to regain some energy before my next treatment protocol scheduled for Dec 3. Once again, talking with the doctor about the possible side effects of immunotherapy can only be offset by the potential benefits. In many respects, I am fortunate to have doctors willing to spend the time with me and explain all the things that could go wrong during the treatment. It's funny when you think about it...no one ever tried to sell a used car this way! I do know there was considerable excitement about this drug when it first came out. I would be happy to hear some encouraging stories from people here.
  13. Where do they find these names! Perhaps I did not dig deep enough into the 2018 posts but, I would be keenly interested in any treatment updates with this immunotherapy regimen. I completed chemo and concurrent radiation therapy last week and I'm hitting a new depth of side effects now. That said, I hope to regain some energy before my next treatment protocol scheduled for Dec 3. Once again, talking with the doctor about the possible side effects of immunotherapy can only be offset by the potential benefits. In many respects, I am fortunate to have doctors willing to spend the time with me and explain all the things that could go wrong during the treatment. It's funny when you think about it...no one ever tried to sell a used car this way! I do know there was considerable excitement about this drug when it first came out. I would be happy to hear some encouraging stories from people here.
  14. Where do they find these names! Perhaps I did not dig deep enough into the 2018 posts but, I would be keenly interested in any treatment updates with this immunotherapy regimen. I completed chemo and concurrent radiation therapy last week and I'm hitting a new depth of side effects now. That said, I hope to regain some energy before my next treatment protocol scheduled for Dec 3. Once again, talking with the doctor about the possible side effects of immunotherapy can only be offset by the potential benefits. In many respects, I am fortunate to have doctors willing to spend the time with me and explain all the things that could go wrong during the treatment. It's funny when you think about it...no one ever tried to sell a used car this way! I do know there was considerable excitement about this drug when it first came out. I would be happy to hear some encouraging stories from people here.
  15. Where do they find these names! Perhabs I did not dig deep enough into the 2018 posts but, I would be keenly interested in any treatment updates with this immunotherapy regimen. I completed chemo and concurrent radiation therapy last week and I'm hitting a new depth of side effects now. That said, I hope to regain some energy before my next treatment protocol scheduled for Dec 3. Once again, talking with the doctor about the possible side effects of immunotherapy can only be offset by the potential benefits. In many respects, I am fortunate to have doctors willing to spend the time with me and explain all the things that could go wrong during the treatment. It's funny when you think about it...no one ever tried to sell a used car this way! I do know there was considerable excitement about this drug when it first came out. I would be happy to hear some encouraging stories from people here.
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