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Mally

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  1. Sad
    Mally got a reaction from Tom Galli in Mally   
    Thankyou for your replies its always good to hear positive feedback ....im in hospital at the moment for dehydration and not able to tolerate water because my voicebox is working one side and not enough to protect my wind pipe so ive had 3 bags of saline and potassium and on magnesium tablets and these semi thick fruit juices because apparently they slide over the wind pipe better 
  2. Like
    Mally reacted to Tom Galli in Mally   
    Mally,
    A recurrence, never welcome and yours is in a tough area. From duration of radiation, it sounds like you had precision radiation SBRT or CyberKnife and is a good thing. Now your chemo is likely adjuvant therapy, likely reduced strength and duration. 
    We have many problems in our (US) medical system but being put on a waiting list is not one of them. Glad the ENT lifted your priority. Chin up. You can do this again. 
    Stay the course. 
    Tom
  3. Like
    Mally reacted to Susan Cornett in Mally   
    Mally - 
    I'm so sorry that you are having to endure all of this. Keeping good thoughts for you - 
  4. Like
    Mally reacted to BridgetO in Mally   
    Wow, Mally, you've really been through it! I'm sorry to hear about your lymph node and the resulting voice box problems! Are you getting any IV hydration? Have they considered it?  I hope for the best for you.Please keep us up to date.
    Bridget O
  5. Sad
    Mally got a reaction from Tom Galli in Mally   
    Well i heard about recurrences in lung cancer but didnt want to think about it but ive had very little voice for the last 3 months because apparently the nerve from my voicebox is being trapped because of an enlarged lymphnode in my neck which biopsy showed cancer so i had a 5 day radiotherepy. 5 weeks ago and now oncologist is taking me off opdivo and ill start chemo next week a combination of carboplatin and another one perm???? Cant remember the spelling of that one so this voicebox problem is not allowing me to drink or eat much without choking and bringing it back up so ive lost a lot of weight and im scared im getting too dehydrated only using the bathroom once a day some days and im on the list for surgery to repair the voicebox with collagen to keep it closed and dr said ill get immediate success and even better after a week or too so im checking the mailbox everyday hoping for admission date and both oncologists have heard my whispering voice abd did nothing so i went to a gp and got a referal to a ears nose and throat specialist and hes put me on urgent list because of quality of life so i could have kissed him 
  6. Like
    Mally got a reaction from Tom Galli in Mally   
    Thankyou Michelle could do with some good news and yes south Australia where i live is up to 13 days with no new cases and only 2 in hospital and none in intensive care ....i think closing all state borders has helped stop the spread here and isolation ..the only time ive left my house is to keep hospital appointments...i wish you guys had the same success 
  7. Like
    Mally reacted to Rower Michelle in Mally   
    Hi am ally,
    Here is the US the Aussies are getting high marks for managing the pandemic, hopefully this nasty virus will burn itself out.  
     
    I’m sorry you feel so crappy, sometimes with radiation (from what I hear from my friends) it was worse then chemo, particularly the fatigue and cough.  
    This is a great shot to NED, hopefully you’ll get great news in the next few weeks.  We’re pulling for you!
    Michelle
     
     
  8. Like
    Mally got a reaction from Tom Galli in Mally   
    After months of shoulder and neck pain after 2 days of radiotherepy the pain went so that was great but i feel tired and no appetite which is unusual for me and a dry cough so the next scan wont come quick enough on 21st may to see if the radiotherepy has worked but times are more depressing with this corona virus to worry about ..
  9. Like
    Mally reacted to Babs in Mally   
    Hi Mally,
    I’m not sure but has anybody thought it might be shingles?  I was at the end of Radiation/Chemo and developed some painful red bumps at the back of one thigh and turned out that’s what it was.  Are they only on 1 side?  Just a guess?  If it is, they should be able to give you something to help with the itching/pain until it runs it’s  course which unfortunately it has to do.  I hope you can find some relief/answers.
    Babs
  10. Like
    Mally reacted to Rower Michelle in Mally   
    Oh good grief Mally.  You must feel so uncomfortable!  AND being given the MD run around.  Most of these GPs don't have any clue as to what these newer therapies are all about.  I'm so glad you did the homework as antibiotics and immuno don't mix.   
    When I was first diagnosed I went to my PCP as part of the hospital discharge, my PCP said my diagnosis went way over his head.  At first I was miffed, but now I'm relieved because my onc in double boarded in Internal Medicine so he's my quasi PCP too.   It's worked out much better.   Are any of the docs down there double boarded to help you stream line your care. 
    I do hope you feel better soon.  Take care. 
    Michelle 
  11. Like
    Mally reacted to BridgetO in Mally   
    Have you talked to your primary care doctor about this?
  12. Like
    Mally reacted to LUNGevityKristin in Mally   
    I'm so sorry, Mally.  Can you get a second opinion or talk to someone else about your concerns?
  13. Like
    Mally reacted to Tom Galli in Mally   
    Mally,
    Do I understand you are receiving another SBRT treatment?
    I can't hazard a guess about the nature of the clusters of tender nodules.
    Stay the course.
    Tom 
  14. Like
    Mally got a reaction from Tom Galli in Mally   
    I dont think they are painful enough for shingles because my mum had them many years ago and she said they were very painful but its going to be very sore after radiotherepy like severe sunburn so nothing to look forward to but if my upper arm / neck pain goes away ill be a very happy lady 
  15. Sad
    Mally got a reaction from Tom Galli in Mally   
    My gp was the first to say i may need a biopsy on these nodules this is after asked my oncologist if this was a lymph node and pointed to it and he said no so i made another appointment at my dr surgery with the dr that does biopsies and at this stage there was about 6 or 7 nodules and he just looked with a surprised look and said "whats that ",and i said i dont know thats why im here so he prints out a script for antibiotics and said take these and come back in 2 weeks and i asked him if these antibiotics are ok to take while on immunotherepy and he said yes they are so i read up some things that suggests taking antibiotics is not good so i stopped taking them and asked my oncologist and he said i never should have been prescribed these when he didnt even know if i had an infection.....so ive never felt so out of control as i do now and these bumps have been seen by 2 oncologists and 3 gps and none seemed worried about them and now ive been measured up for radiotherapy and i dont get that until april 21st and they are warm and tender and slightly itchy and i accidently scratched too hard and a couple of them were oozing a clear liquid ...sorry for the rant im just confused 
  16. Like
    Mally reacted to JC63 in Two separate cancers   
    Hello Everyone,
    Last summer, I was diagnosed with NSCLC, had surgery/chemo, and am doing okay so far. At the same time, I was also diagnosed with follicular/papillary thyroid cancer that they initially thought spread to my lung, but turned out to be two different cancers. 
    Two weeks ago, I had my thyroid removed and am not doing so well emotionally. I was wondering if anyone else has been diagnosed with two cancers and how you are dealing with it all. I'm just feeling really overwhelmed.
    Thanks,
    JC
  17. Like
    Mally got a reaction from Tom Galli in Keytruda side effects   
    Ive been on opdivo now for 25 months and after about 5 months i had itchy rash which woke me up through the night so i saw a dermatologist and a steroid cream and a good moisturizer to use 3 times a day and it corrected it to an occasional itch and now non to speak of ...so best of luck to you ..
  18. Like
    Mally got a reaction from Rower Michelle in Keytruda side effects   
    Ive been on opdivo now for 25 months and after about 5 months i had itchy rash which woke me up through the night so i saw a dermatologist and a steroid cream and a good moisturizer to use 3 times a day and it corrected it to an occasional itch and now non to speak of ...so best of luck to you ..
  19. Like
    Mally reacted to RonH in Keytruda side effects   
    SPS - I can't speak specifically about Keytruda as I am on Durvalumab, but a rash with or without itching seems to be fairly common on many of the immunotherapy drugs. I broke out in a rash within a week or two after my first infusion, which worsened after the second one. My infusions were then temporarily stopped for 5 weeks due to my liver function (AST & ALT) test going high (yet another side effect to keep on eye on). Once those returned to normal levels, and my rash went away, I restarted the immunotherapy. After almost 8 months now I still get the "itches' and maybe a little rash the week of the infusion, but no where as significant as it originally was and I barely notice.
  20. Like
    Mally reacted to TJM in Slow growing lung nodule   
    Thanks Mally. Not the best of nights last night but should be better tonight.
  21. Like
    Mally got a reaction from TJM in Slow growing lung nodule   
    I understand how you feel Tom as I had the same thing happen to me but looking back and getting told it's a dormant nodule made me feel relieved and the idea of getting it out didnt cross my mind then roll on a few years and it's gone and hopefully for good and I wish you all the best too ...
  22. Like
    Mally got a reaction from Tom Galli in Mally   
    Thankyou everyone for your replies ...
  23. Like
    Mally reacted to BridgetO in Mally   
    Whoo hoo Mally! May you and NED have a long and happy relationship.
  24. Like
    Mally reacted to Tom Galli in Mally   
    Hey everybody, Mally is NED -- AGAIN!  How about that.
    Stay the course.
    Tom
  25. Like
    Mally reacted to Rower Michelle in Mally   
    A very Happy Birthday Mally!  Wonderful news!
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