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  1. Today
  2. Hi, Thanks for letting me join. My husband after 18 months of back pain and difficulty walking was sent for a bone scan which showed cancer through out his spine and. then chest x=ray showed tumours in lung so stage 4 lung cancer diagnosed. I know others on here will know what the feeling of shock and devastation felt by us both. Our Dr referred us to an oncologist who is going to give radiation treatment just 10 for palliative care. But our confusion is with the Dr who did the lung biopsy as he has contacted a medical oncologist who sent an appointment and we are also to see if my husband would benefit with Chemo as well. That appointment is after the Radiation sessions are finished. All new to us can ay one enlighten me. Does one Oncologist not recommend/oversee both treatments. The Oncologist doing the radiation treatments knows nothing about the other Oncologist. ??
  3. Yesterday
  4. That was a Spirometer. I find it really helps my breathing as well. I had surgery at 4 pm and was up and walking around the hospital at 6 am the next morning.
  5. I don't think surgery is a option due to neurological issues spasmatic and twitch's and jerks Tuesday will end week 2 of therapy but felling nauseous and fatigue and only 2 weeks yuk
  6. Thanks Tom...I kinda feel after 21 years....I have something to say. It's getting better...research is getting better ! One day....I'm sure it will be gone.
  7. Welcome Karen! It is so wonderful to hear that treatment works. You are a beacon of hope in our sea of uncertainty. Stay the course. Tom
  8. Katum, I would definitely disclose the pleural effusion (fullness in left lung) symptoms to the chemo nurse before starting treatment. Let the nurse and doctor make the call on administering chem given this symptom. Stay the course. Tom
  9. wow Karen, completely agree with all you speak of. Laughter being one of the best medicines; Becoming your own and in my case, my husband's advocate. Every time, i learn something new every day. I also have been so on top of it, some on his team (surgery, oncology etc) have missed things, wrote things that were wrong, the list goes on. This new finding is troubling and not a lot of info out there that I can find. Any info you have on Pseudoaneurysm from descending thoracic aorta would be great. Thank you so much and again, Welcome to the forum!!! XX
  10. Yes...Michelle....I fought for a Medical Onc...that would listen to ME. I wanted Immune Therapy. I also got my own copies of my reports and advocated for myself. Don't get lost in the crowd. You're the best one that can take care of you.
  11. Thank-you all for welcoming me. I have to learn how to navigate this site... Moonbeam, I'm so sorry for your husbands diagnoses..but what I can tell you....is endorphins are essential. Stay as positive as you can and laugh as loud as you can, my sister, friends and I have taken complete chemo wards down in laughter xo
  12. I got up and walked arount the unit the same day as my surgery. Generally, the sooner you start walking, the better.
  13. Hi Karen- Nice to meet you! You’re the perfect example of how to live to the next breakthrough. As a Stage IV ALKie that’s pretty much my battle plan. I’d love to hear about your clinical trial experiences & how you found a med onc to support you. Are you still with the same onc or did you have to fire any along the way? Like all of us, LC was not part of the plan. So now we have to make another one. Welcome! Michelle
  14. Karen - your strength is admirable and congratulations on 21 years!!! Welcome to the forum! Husband stage 2b lung cancer pneumonectomy left lung almost 5 months ago
  15. Hi Katum- Thanks for the update! Just a word of caution on the waiting. Learning to be a patient requires patience on the mindset shift to live with this stuff. A simple phone call can make the difference between peace of mind or a visit to the ER. So often times we think we can tough it out when in reality with LC it’s better to be proactive. LC is sneaky & we must not ever let our guard down. I had an issue with fevers after my first dose & landed in the ER. The docs were very aggressive wanting to rule out a pulmonary embolism. A stat CT scan was ordered up & I had a fountain of blood draws. Turned out to be a virus 🦠. I was so glad to be “over treated”! Keep us posted! Michelle
  16. Thanks Robert, I do feel it gives us a purpose for this whole thing. Congrats on 17 years....quite a ride huh !!!
  17. Karen Good for you and i like you comment I believe in being a piece of the cure.. I am 17 years and two cancer diagnoses. Oh well..
  18. Thank you everyone for your encouraging words and support!! Mom just finished 5 rounds of targeted radiation for the brain metastasis. She’s still feeling good and has so far had no negative effects from the radiation. They also did a radiation treatment on her hip to help with the pain. She starts her chemo treatment Monday. She isn’t doing the immunotherapy at the advice of the oncologist at MDA, and apparently this is so she won’t be excluded from potential clinical trials in the future. She’s doing well right now, although she’s now saying her leg is hurting below the knee and there’s a fullness in her left lung. I’m worried that the fullness is pleural effusion, and I suggested to contact her oncologist, but she’s worried this could potentially push back the chemo treatment Monday, so she wants to wait until after the first treatment. I’m not sure if this is the right decision or not, but she says it’s not really affected her breathing, so I guess we can just wait until after the treatment Monday. I really do thank you all for the support as well as the resources y’all have made available for us to try and get a grasp on everything.
  19. they gave me something when i was in the hospital with pneumonia that i have been using u suck in really hard and it blows that little thingy up LOL it seems to really help my lungs and i had that lung test done and they said that i passed that just fine .Now when you got out of surgery how long was it before you could get up?
  20. I was 44 when I was first diagnosed with NON SMALL CELL Lung Cancer in my left lung it was 1998. It was a year after my Dad passed with the same thing. Everything changed..within 3 months. Business closed, husband left and I was looking at Thoracic Surgery. I knew then I was stronger than I ever thought possible. I wasn't diagnosed again until 2014 when I had a second Lobectomy on the left lung. Six months after my Sister passed from the same thing. In 2016 it was back in the lung and spread. I was given massive Radiation on my Pericardium and also had RFA-Radiofrequency Ablation on my lung. I was told I had less than 6 mths. Me being me..fought and got a Medical Onc...who suggested a new treatment that may give me a year at the outside. I had been on 6 Clinical Trials and this would be my lucky 7th. I believe in being a piece of the cure....try what you can ..maybe someday in the future something will work to irradiate Cancer for good. It is now 2019...I've been on Keytruda for about a year and a half. The tumours on my Pericardium and heart are no longer there and the tumours in my lungs have shrunk considerably. I still have Kidney and Uterus to be concerned about but...all in all.....I think there may be something to this. Next month it will be 21 years and 3 lung cancer diagnoses....I think its a mixture of Research and Moxie, Guinea Pigs are tough animals and I'm proud to be one..
  21. Eagle13 Yes Imfinzi sent me all the material for record keeping and a 800 number if rquired for any concerns. while on this drug. I found with getting my bi-weekly blood work sent to me online. That is what the doctors look at prior to ordering your next infusion excellent information to stay on top of
  22. Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups. I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected. The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment. 🦅
  23. It’s different for everyone and depends a lot on your lung capacity before surgery. Exercising and doing breathing exercises before surgery helps. I was really surprised about how little the surgery affected my breathing, even immediately after. The only time I noticed any differences was when I would walk around the hospital wing. After a few laps I’d get winded quicker. There was no pain when breathing, just shortness of breath when being active. I did exercise and use the spirometer a lot after surgery to minimize the differences. I still am.
  24. Eagle13 That is correct. My doctor was upset that the ER doctor kept saying i was on chemo and had no idea i was on Immunotherapy. I now keep the info on me at all times and use the medical bracelet that Imfinzi gave me.
  25. There are breakthroughs in treatment taking place everyday. This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions. Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice. It has made a world of difference for me. Forums like this one and other focus groups you can join are a wealth of information. Be sure and do your own verification on things you learn. 🦅
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