Rower Michelle Posted January 25, 2019 Share Posted January 25, 2019 Hi Charlie Thanks for your post- it’s very interesting. I’ve heard of a few PDL-1s monitoring their diet & PH levels too They are all in NED. You might want to see if there is an Integrative Oncologist in your area to help you put together a comprehensive treatment plan. When I was first diagnosed, I suppose like many, I did hours of research. For me the internet can be a scary place. My Integrative oncologist aka the hippie doctor is doing a great job. The less time you spend online is more time to enjoy doing other things. Hope this helps! Michelle Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted January 25, 2019 Share Posted January 25, 2019 Rower Michelle, what is NED? Link to comment Share on other sites More sharing options...
LexieCat Posted January 25, 2019 Share Posted January 25, 2019 "No Evidence of Disease"--IOW, what we all want. They don't like to use the word "cured" but NED is where we all want to be. Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted January 25, 2019 Share Posted January 25, 2019 oh, okay Lexiecat, thanks for that . Link to comment Share on other sites More sharing options...
Kleo Posted February 15, 2019 Share Posted February 15, 2019 Hiya Fellow Durva folks! Anybody miss me? 🤣 How's everyone doing? I started working again...supposed to be part time but...well...they keep increasing my hours. LOL Doing much better now...back at my durva infusions. Caught that nasty bug that was going around but a quick dose of antibiotics fixed it. All the muscle pains in my side and back went away with the steroids. Now I just have a sore shoulder thing. I'm looking into physical therapy for that I guess. Doc says it's just me...not cancer related. I get the weirdest stuff. 😁 Hope everyone here is doing good! I don't get to drop in as much as before with all the working. Meh Rower Michelle, Robert Macaulay and PaulaC 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 15, 2019 Share Posted February 15, 2019 So glad to hear you’re doing well! Link to comment Share on other sites More sharing options...
BridgetO Posted February 15, 2019 Share Posted February 15, 2019 We did miss you ,Kleo! I was getting ready to post a "Where is the other Durvalumab twin?" message. I'm glad to hear you're doing well. Link to comment Share on other sites More sharing options...
Barb1260 Posted February 15, 2019 Share Posted February 15, 2019 Glad you are doing well! Link to comment Share on other sites More sharing options...
LexieCat Posted February 15, 2019 Share Posted February 15, 2019 Great to hear from you, Kleo! Sounds like you're doing great--keep it up! Link to comment Share on other sites More sharing options...
PaulaC Posted February 15, 2019 Share Posted February 15, 2019 Good to hear your doing good! Link to comment Share on other sites More sharing options...
LaurenH Posted February 15, 2019 Share Posted February 15, 2019 Hi, Kleo! It's good to have you back! Thanks for the update and we're glad to hear that things are going well! Have a wonderful weekend, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 15, 2019 Author Share Posted February 15, 2019 Good to hear Kleo Have you got your Imfinzi Silver medical bracelet yet?. Now halfway completed. Bob Link to comment Share on other sites More sharing options...
Charles Posted March 9, 2019 Share Posted March 9, 2019 Hey Robert, how are you doing on the Durvalumab? Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 9, 2019 Author Share Posted March 9, 2019 Charles Number 14 coming up next week all my blood work except Lymphocytes which has been out range since day 1 (low). Fatigue has gone but that could return at any time same with the itching. At present time this is the best i have felt since starting treatment late August last year. The only thing is chest congestion in the morning due to inflammation with slight cough caused by the drug working its thing. Is it working ? i never ask seen the doc yesterday and next scan is late April and as i was told in the beginning if there is any progression the treatment will halt.So i just keep showing up for the blood work and infusions bi weekly with monthly doc appointments and three month CT. Que sera sera Bob Link to comment Share on other sites More sharing options...
Charles Posted March 9, 2019 Share Posted March 9, 2019 Hey Robert, glad to hear back from you. just finished number 3 on Tues. I had a liver scare so went to E.R. and it turned out to be inflammation so I didn't take the third infusion due to prednisone but got it a week later. I'm like you, feel better now than any point in treatments. Coughing comes and goes but can do more physically, inflammation is worse as the day goes on but not near as bad as it was, starting to have more "good lung" days than "bad lung" days and hoping no more side effects except inflammation. Charles Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 9, 2019 Author Share Posted March 9, 2019 Charles In the past with gout i took ibuprofen and worked real well for me. Also took some last December when i got bad chest infection . Now seeing my lungs are inflamed by the drug working i decided to take one once a day and it sure has helped my condition. Bob Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 9, 2019 Author Share Posted March 9, 2019 Charles This is some information i read on Ibuprofen and immunotherapy https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/ibuprofen-while-ipi Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted March 10, 2019 Share Posted March 10, 2019 Robert, funny you should mention Ibuprophen, I just happen to have a bottle not 6 inches from my left hand here by my computer, yeah it works pretty good , thanks for the link, Charles Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 10, 2019 Author Share Posted March 10, 2019 Charles I have also been using Mucinex tablets twice a day it Helps loosen mucus and makes coughs more productive. They are approved according to the Durvalumab site as safe drug.on there lookup register. Link to comment Share on other sites More sharing options...
Charles Posted March 10, 2019 Share Posted March 10, 2019 Robert, I use generic Mucinex, have been since before the diagnosis, for COPD. Link to comment Share on other sites More sharing options...
Opal Posted March 17, 2019 Share Posted March 17, 2019 On 3/9/2019 at 5:02 PM, Robert Macaulay said: Charles Number 14 coming up next week all my blood work except Lymphocytes which has been out range since day 1 (low). Fatigue has gone but that could return at any time same with the itching. At present time this is the best i have felt since starting treatment late August last year. The only thing is chest congestion in the morning due to inflammation with slight cough caused by the drug working its thing. Is it working ? i never ask seen the doc yesterday and next scan is late April and as i was told in the beginning if there is any progression the treatment will halt.So i just keep showing up for the blood work and infusions bi weekly with monthly doc appointments and three month CT. Que sera sera Bob Hey Bob, Opal here.. I'm 2 infusions behind you tho I started 8/30 I had a nasty rash and my immuno was held. Happy to say that rash is gone but got blotchy rash on arms now. My lymphocytes are low too, but told not to worry. I'm due for scans about April 15 or so. Here's hoping we both get great results. Kleo.... wondering how your joint and back and side muscle pain is? You arent only one getting weird stuff, I too have strange joint back and muscle pain and stiffness. Tylenol is not helping. I get infusion this week and will be inquiring about this. Are these adverse reactions or side effects....or old age perhaps. Hope you are doing good and not working too hard😉 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Opal Posted March 30, 2019 Share Posted March 30, 2019 Hello Durval pals, I will not be getting anymore Durval infusions, did not get #13 but got CT and MRI 3 weeks early due to what I thought was a pulled muscle creating some intermitent pain between my scalpula. My PC doc sent me for Xray, long story short I saw my oncologist and he said MRI shows a lesion on T5. Oncologist had me get blood work up to see if I have mutation...why dont they do it at the get go, I feel all those weeks getting infusion could be wasted. But that was standard treatment for stage III I was told. I'm scheduled for sterostatic radiation next week for the lesion. Does an MRI show cancer, because report uses words like "favorable" and "possible invasion from adjacent primary tumor". I am thinking I would prefer more definitive description before getting my spine zapped! I'm trying to be positive and think now I can perhaps get targeted treatment and this is going to be all good. Anyone have similar experience? Whew! High anxiety here!! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted March 30, 2019 Author Share Posted March 30, 2019 Opal Sorry to hear of your recent results from the MRI and if they sending you for sterostatic radiation next week for the lesion they must have had good indication from the ct and MRI to proceed in that direction. My next scan is due April-30 with follow up the following week with the doctor for results.I am similar to you and staying positive . Link to comment Share on other sites More sharing options...
Barb1260 Posted March 31, 2019 Share Posted March 31, 2019 Sorry to read this Opal. I’m nervous about starting this myself for the same reason without mutation tests. Seems it is somewhat standard for stage 3. My insurance won’t pay until stage 4 and I can’t afford to pay. Hopefully it was found quickly. Keep fighting. Thinking of you. Where are you in NJ? I left 3 years ago. Link to comment Share on other sites More sharing options...
Rower Michelle Posted March 31, 2019 Share Posted March 31, 2019 Hello Opal- Fellow Jersey Girl here. Exit 150. Yes a MRI can show cancer on your spine. Totally understand your situation. I’m really hoping you have a mutation. If that’s the case you might not need radiation- I had spinal Mets at the time of my diagnosis. I was too numb to be terrified. The onc said he wasn’t worried about it so I didn’t dare go to Dr Google. The targeted treatment knocked out the cancer in a few weeks. No radiation required. The MRI showed the cancer on the spine is gonzo. Stay Jersey Strong Michelle Curt 1 Link to comment Share on other sites More sharing options...
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