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Mally

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Everything posted by Mally

  1. Mally

    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. Mally

    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
  3. Mally

    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
  4. Mally

    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 ..
  5. Mally

    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
  6. Mally

    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
  7. Mally

    Mally

    Hi everyone its been a while since ive posted on here ..im having another 5 day radiotherepy 21 april for a lymph node in my neck and i also have this very thick like clusters of peas red tender on my upper chest and i pointed this out to my oncologist asking is this a lymph node and he didnt touch it but just said no and after my last ct scan i asked about it and by now they looked red and sore and had multiplied but they said they werent worried about them but im getting radiotherapy along with the node in my neck now so if he listened to me when there was one lump about 8 weeks ago but no one else has said they have had this so i cant get any information about it and google lead me to sarcoiditis which it says isnt cancer but they wouldnt do that treatment if it werent so for the first time in my cancer journey i feel out of control.
  8. 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 ..
  9. Keep posting Tom and keep us updated..
  10. 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 ...
  11. Mally

    Mally

    Thankyou everyone for your replies ...
  12. Good for you and I bet this year will be even better !!
  13. Mally

    Mally

    Well I got my results of my scan today and all is good with no new spots anywhere so NED is feeling pretty good right now and I hope you are all doing well too ...my only problem is this inflammatory pain which is not comfortable but a common side effect and if I use my cold pack on my shoulder and neck it soon settles so forward march and I'm planning a holiday for my birthday in march and my 4 kids and partners and lots of my grandkids are coming for a trip down memory lane to the little town I lived my first 10 yrs of life in and i cant wait to watch my grandkids swim in the same swimming pool that i swam in all those years ago and to visit the school that i started in ....sorry about the ramble but makes me feel good ...
  14. Mally

    Mally

    It looks at times like the whole country is on fire and the sad part is that so many have been deliberately lit and I hope these people get punished severely because hundreds of houses have been lost and over a million animals have perished so it is a sad time for Australia at the moment ....thankyou for thinking of me ..
  15. Mally

    Mally

    January 4th makes my 3 year anniversary of my lobectomy...wow that time has flown by and I'm hoping my scans will show I'm still doing well but as usual I have scanziety waiting to get my results next Wednesday..I had to have my infusion port removed on December 13th because it was infected and I was in hospital for 4 days on iv antibiotics followed by 10 days of oral when i returned home and that bothered me because i think I've read that antibiotics are not the best to take while on immunotherepy...any thoughts on this please ?
  16. Mally

    Mally

    Hi everyone I'm just wondering if anyone on opdivo treatment are having pain in joints like with me its shoulders and neck and at times into my arms and collarbone area ? My dr says it's an inflammatory condition caused by opdivo and the fact the pain moves around and comes and goes during the day hes confident that's what it is ...I've had scans and waiting on results next week but have any of you experienced pain in different areas and your dr says it's the inflammatory reaction to opdivo ?
  17. Hi Punky sounds like things are looking positive for you ...great to hear !!
  18. Mally

    Mally

    Hi I think that would be a good thing to have someone to talk to that understands and to support and be supported
  19. Mally

    Mally

    Tom I'll skip the shrimp and put a snag on the barbie....lol
  20. Mally

    Mally

    Hello everyone I just want to let you know that I had my 44th dose of opdivo yesterday and got my scan results which were NED and i feel so happy. Tom you were right when you said the radiotherapy would fry the lymph node in my neck and it did just that ...I start on monthly infusions now so that will feel more like a normal life than every fortnight ...I wish everyone on here the best of luck and keep positive because treatments are getting better every day
  21. Mally

    Port?

    I'm so glad you got the port and that your happy with it ...
  22. Mally

    Mally

    Tom you were right that my sore throat didnt last too long only about 2 and a half weeks which I'm really pleased with so thanks for the confidence you give ..
  23. Mally

    Mally

    Hi all my fellow survivors I've finished radiotherepy on a lymph node and it was a 5 day treatment which all I can say is thank God it was only 5 because I dont know how I wouldve coped with more because my throat is very painful to swallow and I have a dry cough and fatigue is noticeable whereas when i was just getting opdivo i felt like there was nothing wrong with me and I'd had radiotherapy 7 yrs ago on my leg for 5 weeks for a sarcoma cancer and felt no side effects then except a sunburnt like leg and the set up for radiotherapy on the side of my neck was very uncomfortable with a mesh screen type thing moulded to my face and attached both sides to the bed and it's so tight that i couldnt move my eyes and my mouth was just parted but if a trickle went down my throat i wouldnt be able to turn and cough and that's what caused anxiety.....one more thing i was told today that i could do opdivo monthly instead of fortnightly but my choice so just wondering if any of you guys have gone onto monthly ?
  24. Mally

    Port?

    Hi Lin I'm having immunotherepy and I have to say getting a port was the best thing I did because I had chemo months before starting the opdivo and I had a vein close to rupture and it was getting difficult finding a vein and I have my blood tests done from my port as well so I would highly recommend it but not so much a pic line because you have to keep that dry I believe whereas the port is under the skin
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