Mally Posted January 3, 2020 Share Posted January 3, 2020 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 ? Link to comment Share on other sites More sharing options...
Tom Galli Posted January 3, 2020 Share Posted January 3, 2020 Mally, My thoughts are for a NED scan! Stay the course. Tom Link to comment Share on other sites More sharing options...
Curt Posted January 3, 2020 Share Posted January 3, 2020 No thoughts on the antibiotics @Mally. Lots of positive thoughts for good scans though. Link to comment Share on other sites More sharing options...
Mally Posted January 8, 2020 Author Share Posted January 8, 2020 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 ... Link to comment Share on other sites More sharing options...
Steff Posted January 8, 2020 Share Posted January 8, 2020 Great news! Link to comment Share on other sites More sharing options...
Curt Posted January 8, 2020 Share Posted January 8, 2020 Awesome! Link to comment Share on other sites More sharing options...
Robert A. Posted January 8, 2020 Share Posted January 8, 2020 Great news. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted January 8, 2020 Share Posted January 8, 2020 So great! What a wonderful way to celebrate your birthday! Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 8, 2020 Share Posted January 8, 2020 A very Happy Birthday Mally! Wonderful news! Link to comment Share on other sites More sharing options...
Tom Galli Posted January 8, 2020 Share Posted January 8, 2020 Hey everybody, Mally is NED -- AGAIN! How about that. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted January 9, 2020 Share Posted January 9, 2020 Whoo hoo Mally! May you and NED have a long and happy relationship. Link to comment Share on other sites More sharing options...
Mally Posted January 9, 2020 Author Share Posted January 9, 2020 Thankyou everyone for your replies ... Link to comment Share on other sites More sharing options...
Mally Posted June 2, 2020 Author Share Posted June 2, 2020 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 Link to comment Share on other sites More sharing options...
BridgetO Posted June 2, 2020 Share Posted June 2, 2020 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 Link to comment Share on other sites More sharing options...
Susan Cornett Posted June 3, 2020 Share Posted June 3, 2020 Mally - I'm so sorry that you are having to endure all of this. Keeping good thoughts for you - Link to comment Share on other sites More sharing options...
Tom Galli Posted June 3, 2020 Share Posted June 3, 2020 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 Link to comment Share on other sites More sharing options...
Rower Michelle Posted June 4, 2020 Share Posted June 4, 2020 Well Mally, this totally sucks, I'm so sorry. I love your GP too, good for you to keep pushing. We're routing for you, hang in there. A big hug to you. Link to comment Share on other sites More sharing options...
Mally Posted June 8, 2020 Author Share Posted June 8, 2020 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 Link to comment Share on other sites More sharing options...
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