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unknown00

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    GR
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  1. Hi, Some feedback would be great. After the first immunotherapy, when do you start to experience any side effects? Is it instantly? Takes a few days? Do you feel like crap for the whole time between each infusion or you can live a "normal" life in between? I know every person is different and reacts different to different drugs. In our case it's Keytruda, but I am sure the same applies to many other immunotherapy drugs. Thank you. p.s: I've read many posts on keytruda on the forum, I thought I should start a new topic to be able to better track the replies.
  2. Hey everyone, Any input on Keytruda? I've been reading a bit of contradicting information... Also, do you know if you are given any medicine to deal with any potential side effects? Btw on Keytruda's page the second paragraph reads: "KEYTRUDA can cause your immune system to attack normal organs and tissues in any area of your body and can affect the way they work. These problems can sometimes become severe or life-threatening and can lead to death. You can have more than one of these problems at the same time. These problems may happen anytime during treatment or even after your treatment has ended." Not really encouraging for someone to whom is has just been prescribed! -,-
  3. Another update. Additional CT scans showed lumphangitis. Based on this, the board decided that surgery is not an option and that we should go for systemic therapy. In the meantime we're still waiting for molecular test results to determine whether chemo should be done in combination with immunotherapy/targeted. Radiation wasn't mentioned at all. B12 + Acid folic have been prescribed. Do the above make sense based on your experience? Is this stage IV..? I was happy to hear that they didn't find any distant metastasis but the doctor said lumphangitis is not a good sign..
  4. Just a quick update. The biopsy result is NSCLC adenocarcinoma. We're in the process or arranging many other tests this week. We should have the results by the end of next week or within 10 days. Fingers crossed it hasn't metastasized. 🤞
  5. @[email protected] Many thanks for the great advice and the amazing resources you've provided. I'll read everything and keep you posted once I have news. May you all have a great day.
  6. Hi again, thanks @Tom Galli , @Suzanna + @LouT for your comments! I appreciate it. The biopsy confirmed that it's a NSCLC cancer. We are going to meet with the oncologist most probably next week to discuss what steps should be next. I believe it will be some CT + PET to identify the stage. It would be great if anyone can give me some feedback on what it would be good to ask the doctor or some information that will help me "verify" that the process is being done correctly and no steps/tests are being skipped. I know that most medical centers follow protocols but maybe there is something additional that I can ask to be done (even though I would assume this is an oncologist's job and not mine..but OK, let me be the control freak that I am ). @Tom Galli I'm Greek but not living in Greece
  7. Hi there, I really appreciate you taking the time to reply and address all my concerns! Getting feedback from people who have been through this or have been around other people who did is very helpful. I will try to follow your (and everyone elses') advice. The last few days I've been watching the story of many cancer patients on YouTube. The updates on checks/scans, mental ups and downs, happy/bad endings. Even though it is positive and happy when people win this battle (even temporarily), the bigger picture is quite depressing and sad. I really hope the technology and medical science will advance soon and be able to cure everyone.. As the days pass by I come to realize more and more that this is going to be a marathon in an extended period of stress, pain and anxiety for everyone involved. I will keep you guys updated once I have the results of the biopsy and every other scan/test done... Regarding your battle, I really hope you manage to overcome all the difficulties and win. Fight as hard as you can for you and your loved ones. I am new here and don't know everybody's story. I will try to read older posts though to get an idea/catch up. I appreciate your support. Stay strong
  8. I'll keep that in mind, thanks I'll update this topic (or maybe create a new one) once we have the first results. The biopsy will be done about 3 weeks after the CT. I was hoping for earlier but it's Easter and doctors aren't available. Let's hope this 4 week delay won't change much. (3 weeks to the test + 1, hopefully, for the results)
  9. Thank you both for your replies/suggestions and I wish you all the best in your journey! I already feel a bit better talking to people who are actually more relevant to this than anyone. One of the problems is that my dad is afraid of doctors and any medical procedure. Even now he is still waiting for the biopsy results to be convinced it's cancer even though everything up to now basically strongly indicates that. He doesn't like talking about it, or the treatments or any outcome. I too agree that we should take it one step at a time but I cannot ignore doctors' already treating it as a cancer or the CT report suggesting that it is highly suspicious for malignancy (which is basically just giving the benefit of a doubt). I cannot continue my life as it was before because before this I wasn't really too close to him. We would see each other once a week for a short period of time (due to various reasons, work, family, covid). Now we meet daily for a couple of hours, I try to be there and basically make up for all the time "lost" over the years. That's how I feel like doing even though I really don't know if this is actually good (for both). I see that he likes spending time with me. I will most probably have a lot of questions down the road (I always have many), so please bare with me..! p.s: English is not my first language so please excuse me if some things I say may not make much sense!
  10. Hi everyone, I never thought I would ever "need" to register on such a site but here I am. A tumor was found in my dad's lung and we're now waiting to have a biopsy. Based on the initial CT report things are not looking good, the main tumor is almost 5cm and there's strong indication of lymphangitic carcinomatosis (amongst many other findings..). Heavy smoker and with a family history.. Before this, I didn't really know much about cancer. I didn't even believe that there is no cure because I thought it is impossible for humanity and all the brilliant minds to not have solved this in decades. I was convinced that it's the pharmaceutical companies hiding the truth. In the last two weeks I have read a ton of information, because I needed to understand as much as possible what it is all about in order to try and seek for the best possible solution. I learned a lot during the last few days. From time to time I start the blaming game, that if I had known all this info earlier in life I could have suggested a checkup many years ago. Anyway. Currently, I don't even know where to focus. My mood has been really bad. First of all I am still in stock of the diagnosis. I am not optimistic because of the history in family and because I know that the 17% survival rate isn't something made up. It's a fact. It is also a fact that where I live there's nothing else available other than surgery,chemo,radiation as a treatment. No Immunotherapy, no Proton or any other treatment which I've read have good results. Then it's the financial issue not allowing us to travel elsewhere to get something better. Another thing is that I don't know how to handle this time with him. I feel the need to be closer and spend time together because I don't know if he's gonna be here in 3,6,9, 12 months etc. So many thoughts are breaking my heart related to this. Shall I be positive? (if that is an option..) Shall I be optimistic? Shall I be raw and truthful with my thoughts? Shall I try to support him in anyway. Are there things I should/shouldn't say? Should the kids be around him all the time or will this make him feel bad? (for example the thoughts of him not being around when they grow up etc) I will of course seek professional help for this part but I would like to know from people here what they think. Regarding diagnosis, to my understanding, the most important factor that determines how bad a case is, is whether the cancer has metastasized. Is that correct? As long as the cancer is no longer in a single organ, then no matter it's type, it's bad. Whereas if its localized, even if aggressive, it could potentially be treated. Also I read quite a few posts here mentioning "biomarker testing". Is this something that they will do in biopsy as part of the process or is this something additional that I must ask to be done? Thanks for your time.
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