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Roz

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  1. Like
    Roz got a reaction from LouT in Malignant lung cancer   
    Sajid,
    It sounds like your wife is doing so much better with the targeted treatment. 
    The weight loss can be scary. Hoping that the dietician will give you suggestions to help. Sometimes having 6 small meals a day that are high in calories can help, especially if she feels full after eating.  The fact that her cough is better is positive.
    I hope her targeted treatment continues to work and that her upcoming scans in July show reduction in her cancer!
     
    Best,
    Ro
  2. Like
    Roz got a reaction from LouT in Home from surgery update!   
    Hi MaryLou,
    I'm happy to hear that you are feeling pretty well after having undergone a lobectomy. My guess is that little by little you will start to feel better, breathe better, and cough less. I'm sure it feels great to be out of the hospital. Just remember to take it slowly at first and give your body time to heal.
     
    Best,
    Ro
  3. Like
    Roz got a reaction from LouT in Still processing PET scan and biopsy   
    Lizzy,
    I'm so sorry to hear your news.
    I hope that you can spend the rest of your time with your family and friends.
    Wishing your comfort and peace,
    Ro
  4. Like
    Roz got a reaction from Maryloumoo in Home from surgery update!   
    Hi MaryLou,
    I'm happy to hear that you are feeling pretty well after having undergone a lobectomy. My guess is that little by little you will start to feel better, breathe better, and cough less. I'm sure it feels great to be out of the hospital. Just remember to take it slowly at first and give your body time to heal.
     
    Best,
    Ro
  5. Like
    Roz got a reaction from Tom Galli in Still processing PET scan and biopsy   
    Lizzy,
    I'm so sorry to hear your news.
    I hope that you can spend the rest of your time with your family and friends.
    Wishing your comfort and peace,
    Ro
  6. Like
    Roz got a reaction from Justin1970 in Still processing PET scan and biopsy   
    Lizzy,
    I'm so sorry to hear your news.
    I hope that you can spend the rest of your time with your family and friends.
    Wishing your comfort and peace,
    Ro
  7. Like
    Roz got a reaction from Tom Galli in Home from surgery update!   
    Hi MaryLou,
    I'm happy to hear that you are feeling pretty well after having undergone a lobectomy. My guess is that little by little you will start to feel better, breathe better, and cough less. I'm sure it feels great to be out of the hospital. Just remember to take it slowly at first and give your body time to heal.
     
    Best,
    Ro
  8. Like
    Roz reacted to Lizzy in Still processing PET scan and biopsy   
    Hello Again to Everyone! Thank you all so much for your comments and emojis of support these past weeks, and to Lisa - what a wonderful story to share, I am so pleased for you and your story is inspirational to me, thank you for that.
    So, my apologies for being MIA for the past few weeks, as you all know this disease takes you physically and mentally all over the place and the last few weeks has been an emotional and physical rollercoaster. The PET scan came back and to everyone's shock the following was observed. The primary mass in the lung reduced significantly (down to 3.7x3.1 from 5.5x5.4) with metabolic activity down from 27 to 3.1. The radiation rounds definitely made an impact there together with the chemo.
    All of the other masses and nodules (apart from the one in the right adrenal gland which is still growing slowly) have also reduced in size and metabolic activity with some of the prior soft tissue activity having disappeared altogether. My oncologist is truly blown away at these findings and levels. Going forward the plan is to do another PET scan in June at the same time as the MRI for the brain. No plans for any further radiation at this point. I am so grateful to all of the medical team whose treatment plan has allowed me to come this far, it is truly overwhelming to still "be here" and see some positive directions in the treatment to slow this thing down.
    Chemo. That is carrying on via a 21 day cycle made up from Keytruda and Pemetrexed. For the past few cycles I've been dealing with various elements of cytopenia, so as part of trying to get the white and red blood cells back in range and to attempt to minimize the other other chemo side effects, they have me on 50% strength on the pemetrexed. Round #7 will be coming up on April 21st and my Oncologist is hopeful I can go up to 75% so long as the blood counts support that.
    Physically, I'm tired a lot (anemia), and my stamina doesn't give me much leeway for anything more than pottering around the house and garden, so I am taking advantage of sleep and rest, but I'm also trying to not get into a rut of TV with more TV.
    Mentally, it's been rather strange to go from thinking about and planning my death, to move to thinking about the joy the day I wake up to can bring. Some things I find difficult (showering - cannot balance for the life of me) but that bring me the joy of a long soak in the bath instead.
    I'm on my final paper for this year's University study so I'm hoping to get that done and dusted while I'm in this good period of everything generally going in the right direction of slowing down the cancer spread. 
    I can't believe the 5 month journey this has been so far with so many twists and turns, but here I am, 5 months in, with a working treatment plan, feeling mostly great except for the original pain in my back and extreme tiredness. I will never get over being so grateful for the medical team I have, and I treasure the moments I share with my hubbs (even the puking in the buckets moments) - yep you read that right - multiple buckets strategically placed around the house because we learned early on I was always in the wrong room).   Take care everyone. If anything new crops up I'll let you all know. Thank you to each and everyone of you for your support to me on my journey.
    Lizzy
     
     
     
     
  9. Like
    Roz reacted to Judy M2 in Still processing PET scan and biopsy   
    Lizzy, I'm very sorry you've reached this point. I hope that you get the best hospice care possible. Wishing you peace and comfort. 
  10. Like
    Roz reacted to Tom Galli in Still processing PET scan and biopsy   
    Lizzy,
    We all face this reality. Life has two certainties: it begins and ends. The length between for us tends to be shorter. 
    When it is my time, I hope to face it with the grace and dignity you've displayed. It has been a distinct pleasure to have made your acquaintance. I pray for your peace.
    Stay the course.
    Tom
  11. Like
    Roz reacted to jack14 in A new therapy for NSCLC?   
    The immunotherapy drug keytruda worked for almost two years. 
    Then the Tabrecta was working for a couple of months and then it began causing lung problems. Bi-lateral pneumonitis and almost did me in.
    So, now I am in chemotherapy and so far no real bad issues. Second round this week.
  12. Like
    Roz reacted to Maryloumoo in Home from surgery update!   
    Hi all! My surgery was 5/26/22. I had to stay 4 days because of the chest tube just wasn’t ready to come out. The tube was not painful, just very annoying. The nodule was cancer so they did the full lobectomy.
     
     The surgery wasn’t bad! I had a lot of nausea afterward, but that’s how anesthesia effects me always. Pain and nausea were controlled with meds and I was up walking the evening of the surgery. I had a combo davinci / vats- surgeon had to switch from robot to vats to get a better look and to actually go in with her fingers to find the culprit nodule! I am very sore but not in pain. My breathing is different, not painful just hard to take deep breaths. I’m do all the exercises and I feel like I will heal well.  
    surgeon is  confident she got all the cancer and no further treatments are warranted.  Just scans every few months. I’m happy with the outcome and glad it was not a recurrence of the other cancer I had! 
    i can’t remember who it is on here who is having the same surgery here soon and was very anxious, I hope whoever that is reads this! It’s not a day in the park but it’s really not that bad! I’m just sore and that’s it. I’m coughing as I should which can hurt a bit while I’m coughing but overall I feel pretty good. I got up this morning and made my own coffee and breakfast! Everyone is different, sure, but as far as surgery goes, this ain’t a bad one after the first day! Good luck to you. Here if you have any questions for me! 
     
  13. Like
    Roz got a reaction from Tom Galli in Malignant lung cancer   
    Sajid,
    It sounds like your wife is doing so much better with the targeted treatment. 
    The weight loss can be scary. Hoping that the dietician will give you suggestions to help. Sometimes having 6 small meals a day that are high in calories can help, especially if she feels full after eating.  The fact that her cough is better is positive.
    I hope her targeted treatment continues to work and that her upcoming scans in July show reduction in her cancer!
     
    Best,
    Ro
  14. Like
    Roz reacted to Tom Galli in Malignant lung cancer   
    Sajid,
    Your report on declining fluid does in fact suggest Gefitinib is working--great news! O2 saturation between 95 and 98-percent is indeed good. So I'm glad things are moving in the right direction.
    I'm not a doctor but I do have a morning cough, especially in the spring with increasing pollen. It also presents like something stuck in the middle of my chest and wanes after midday. I believe this symptom occurs because of congestion that happens during my evening sleep. I often accelerate the process of dealing with it by starting my day with a long, steamy shower.
    As to how long Gefitinib keeps working, I just hope it keeps working. And yes, perhaps another targeted therapy for EGFR but let's keep things in prospective. Each day Gefitinib works is another day of life. Live in the day. Find joy in each day. Rejoice about the small victories you are having together.
    Stay the course.
    Tom
  15. Like
    Roz reacted to Sajid in Malignant lung cancer   
    Thank you , everyone here for the support and useful information….
    we went today for our first meeting with the oncology consultant named Dr Andrew Conn based here in Bradford, England.
    The bio marker result was EFGR mutation L858R. 
    she was put on Gefitinib (Iressa).
    What concerns me is he said they normally prescribe Osimertinib. 
    but didn’t because of NHS guidelines and because of the condition my wife was when she was admitted to hospital with her breathing and fluid in lung.
    Good news he said was that , 3 weeks of taking Gefitinib, by looking at recent X-ray the fluid has not built up again, so it may be having some positive effect.
    a Ct scan in July will properly tell. 
     
    her condition at the moment is ok , breathing ok , no oxygen required , oximetry level 95 - 98 % .
    but every morning cough with a bit of phlegm, like something stuck in middle of chest . After midday .. no cough ! Can’t understand why ? 
    also tiredness , fatigue. Will this ever go away .
    and does anyone know how long could she be on Gefitinib before it stops working? …. then what ? Another target therapy pill ?
    thank you for reading …
    regards
    sajid.
     
     
  16. Like
    Roz reacted to Judy M2 in Malignant lung cancer   
    Gefitinib (Iressa) is a first-generation tyrosine kinase inhibitor (TKI) that is used to treat EGFR-mutated lung cancer. I happen to take osimertinib (Tagrisso), which is a 3rd generation drug.
    https://pubchem.ncbi.nlm.nih.gov/compound/Gefitinib
    Lots of people take Iressa. I can't speak to side effects, but you may want to join these private Facebook groups, where there is loads of information:
    https://www.facebook.com/groups/targetedtherapylung/?ref=share
    https://www.facebook.com/groups/EGFRlung/?ref=share
    The good news is that your wife will be taking a targeted therapy. Hope she gets great results. 
  17. Like
    Roz reacted to Tom Galli in Malignant lung cancer   
    Sajid,
    Weight loss during lung cancer treatment is something to be concerned about. Your wife’s targeted therapy may be suppressing her appetite. I’d inform her doctor. 
    I had another type of targeted therapy, Tarceva, as a combination with Taxol and Carboplatin. This affected my taste sensation and I lost my appetite. When my weight started to drop, my wife (a dietitian) read that mint flavoring might amp my appetite. It did and I lived on 3 meals of chocolate mint ice cream till my taste returned to normal. Calories count during cancer treatment.
    Stay the course. 
    Tom. 
  18. Like
    Roz reacted to Tom Galli in Malignant lung cancer   
    Sajid,
    I'm very sorry to learn of your wife's diagnosis. To your questions: is lung cancer curable and does the coughing go away? The answer to both is yes, although cure is not normally used in our community. Here is an explanation of the various terms associated with lung cancer prognosis and here are some suggestions for mitigating coughing.
    You mention targeted therapy and that is indeed a possible treatment. But there is another method that is moving the survival curve substantially--immunotherapy. The bio-gene testing or biomarker testing should reveal if either or both of these methods are a way forward for treating your wife's lung cancer. I was diagnosed in February 2004, well before the advances in targeted therapy or immunotherapy. I had five failed treatments before a precision radiation treatment--CyberKnife--dealt with my lung cancer. Unfortunately persistence and patience are treatment fundamentals, but if I can live, so can your wife.
    When a treatment plan is devised, there is every reason to hope that it will mitigate your wife's lung cancer. Treatment may also reduce the need for supplemental oxygen. I look forward to you telling us about your wife's successful treatment that results in NED--no evidence of disease, our gold standard result.
    Stay the course.
    Tom
  19. Like
    Roz reacted to RJN in Malignant lung cancer   
    Dear Sajid,
    I am sorry to hear about your wife. I can’t add much to the above, but wanted to welcome you to this forum as someone with a similar diagnosis based in the UK. It can be a lot of help to navigate this difficult time. I am an otherwise healthy 49-year old, and stage 4 NSCLC adenocarcinoma and was diagnosed last year, so can understand your shock.
    The next few weeks will likely be difficult, as you wait for a treatment plan, but hang in there. There are great treatments available and a good chance that your wife’s symptoms could improve. My cough wasn’t too bad, but it disappeared a few weeks into treatment.
    Let us know how it goes, Rikke
     
  20. Like
    Roz reacted to Rower Michelle in Malignant lung cancer   
    I’m so sorry you’re on this horrible roller coaster ride.  The circumstances were very similar at the time of my stage IV diagnosis.  In order to stop the rapid clinical decline my oncologist opted to give me one round of a chemo/immunotherapy cocktail while we waited for the biomarker testing. That decision probably saved my life. Nowadays a chemo combo of Carboplatin and Altimpta would be administered without the immunotherapy.  That was four years ago and I’m still going on the first line of targeted therapy.  Hang in there and keep asking questions…. We’re here for you. 
  21. Like
    Roz got a reaction from Justin1970 in Stage much worse than I expected   
    Hi LilyMir,
    It's devastating to learn that you have lung cancer no matter what the stage. 
    I'm so sorry that your stage is different than you initially thought. 
    Once you get the results of your biomarker testing, there may be a targeted therapy.
    If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.
    We are here for you.
    Please ask any questions too!
    Best,
    Ro
     
  22. Like
    Roz got a reaction from WalkingHorse in Stage much worse than I expected   
    Hi LilyMir,
    It's devastating to learn that you have lung cancer no matter what the stage. 
    I'm so sorry that your stage is different than you initially thought. 
    Once you get the results of your biomarker testing, there may be a targeted therapy.
    If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.
    We are here for you.
    Please ask any questions too!
    Best,
    Ro
     
  23. Like
    Roz got a reaction from Tom Galli in New here but diagnosed 2 years ago   
    Welcome to the Lungevity family.
    If you have any questions we are here for you.
    Wonderful that the Tagrisso is doing its job!!
     
    Best,
    Ro
  24. Like
    Roz got a reaction from Tom Galli in Father diagnosed with adenocarinoma possibly stage 3   
    Hi Salem,
    I don't like when the medical community says something is not curable. I choose not to believe that and its so much better that way. Who know what treatments will be available with research? I never give up hoping for a treatment.
    Hard to answer your questions yet as you don't have results of the biomarker testing. 
    So glad you found our Lungevity community.
    Best,
    Ro
  25. Like
    Roz got a reaction from Tom Galli in Stage much worse than I expected   
    Hi LilyMir,
    It's devastating to learn that you have lung cancer no matter what the stage. 
    I'm so sorry that your stage is different than you initially thought. 
    Once you get the results of your biomarker testing, there may be a targeted therapy.
    If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.
    We are here for you.
    Please ask any questions too!
    Best,
    Ro
     
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