Opal Posted November 21, 2018 Share Posted November 21, 2018 Thanks for sharing. I'll see if I can find it here. I'm using RX steriod creams costing a fortune and not stopping the rash. My rash doesn't itch, just looks ugly. I can live with it but wish I knew if it really was the immunotherapy causing it. Thanks again for info. I hope I can get back on and do as well as you are!! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted November 21, 2018 Author Share Posted November 21, 2018 That is the first thing the doctors ask me everytime do you have a rash. I say no just itch and she was going to give me cortisone cream yesterday for the itch and i told her how well the Derma-E was working and she replied just continue with it. Rash does seem to be big concern in side effects with this drug. Link to comment Share on other sites More sharing options...
Opal Posted November 21, 2018 Share Posted November 21, 2018 It seems to be a common side effect yet not much out there about it. Link to comment Share on other sites More sharing options...
Robert Macaulay Posted November 21, 2018 Author Share Posted November 21, 2018 When the drug company sends you cream in a gift basket, That tell you something. lol Link to comment Share on other sites More sharing options...
Kleo Posted November 26, 2018 Share Posted November 26, 2018 I didn't get no durva gift basket! Man Bob you get all the goodies! 😁 I haven't gotten a rash or even itching all that much. I did notice my skin is extremely dry though. Back spasms have stopped and now it's just sore muscles...I can handle soreness just not that spasming crap! My doc said I get a pet scan next month. Tis the season to get pet scanned...fa la la lala....🎄🎅 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted November 26, 2018 Author Share Posted November 26, 2018 Kleo Well the tube of itch cream they give you in the gift basket might last you two days and the plastic water bottle is now on its way to be reycle depot, They must have paid more to the courier to deliver the contents. But to be fair they are covering all the costs for the infusions and clinic costs and without that i would not be getting this treatment at his time till the goverment make the decision to cover this drug. I am good till February till the next scan. My bet is they are waiting till nearer Xmas to give you your basket. Ho Ho Ho. Bob Tom Galli and Kleo 2 Link to comment Share on other sites More sharing options...
Kleo Posted December 1, 2018 Share Posted December 1, 2018 Got my pet scan appointment....Dec 7th! Now I'm gonna do the scanxiety thing for a week....🤨 Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted December 1, 2018 Share Posted December 1, 2018 Stay positive! Ask for a copy of the scan on a CD. There are youtube’s on how to look at the scan yourself. The PET should light up any cancer that is active. I pray that your scan is clear. 🦅 Kleo 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 1, 2018 Share Posted December 1, 2018 Hey Kleo- The “twins”are gaining quite the following! I admire your tenacity! If there’s anyone who can boss cancer out the door it’s you!! Michelle Kleo 1 Link to comment Share on other sites More sharing options...
LexieCat Posted December 1, 2018 Share Posted December 1, 2018 7 hours ago, Rower Michelle said: The “twins”are gaining quite the following! Personally, I'd tune into their podcast. Kleo, Rower Michelle and Tom Galli 1 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 6, 2018 Author Share Posted December 6, 2018 Heading down to the clinic this morning pretty sure i have Pheumonitis and yesterdays infusion just confirmed, as the cough was getting worse over the last two weeks. No big deal in the big picture. lol Bob Tom Galli 1 Link to comment Share on other sites More sharing options...
PaulaC Posted December 6, 2018 Share Posted December 6, 2018 1 hour ago, Robert Macaulay said: Heading down to the clinic this morning pretty sure i have Pheumonitis and yesterdays infusion just confirmed, as the cough was getting worse over the last two weeks. No big deal in the big picture. lol Bob Prayers Bob Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 6, 2018 Share Posted December 6, 2018 We are praying for a speedy recovery! Link to comment Share on other sites More sharing options...
LexieCat Posted December 6, 2018 Share Posted December 6, 2018 Bummer--I sure hope it resolves soon. Sending good vibes! Link to comment Share on other sites More sharing options...
Roz Posted December 6, 2018 Share Posted December 6, 2018 Kleo, That's tomorrow!!! Good luck with the scan!! Ro Link to comment Share on other sites More sharing options...
Roz Posted December 6, 2018 Share Posted December 6, 2018 Bob, I hope you feel better soon!! You certainly have a great sense of humor and attitude!! Be well, Ro Link to comment Share on other sites More sharing options...
BridgetO Posted December 6, 2018 Share Posted December 6, 2018 Good vibes coming your way! keep us posted. Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 7, 2018 Author Share Posted December 7, 2018 Well that was a intresting long day ,The clinic that does my checkup both doctors were unavailible and were GP, So the nurse told me to go to emergency i cringed and away i went and checked in at 10-30.They took blood work and the young doctor came in and checked me over and i told her the symptoms and the drug she never heard of it and ordered a x-ray. Thy gave me a private room which i was grateful for this time of year.Four hours later the doctor came back and was sorry for the delay. My oncologist in Victoria was on vacation and the on call individual had not returned her call. One hour later and those four wall in the private waiting room were not looking so good but the oncologist had called back and wanted a CT scan done, within ten minutes I had my IV in and taken right in as soon as got there for the scan. Got taken back to my private jail cell and that was taken. No big deal they had two.Doctor came in after about ten minutes and had been in discussion with the on call oncologist. with the results. She said they would rather not use predistone at his stage as it would mean cancelling Durvalumab. All they could see on the scan was Pneumonitis around the my tumor and other than that both lungs were clear of Pneumonitis and i agreed with there decision as the blood work was all good and oxygen levels no concern.Over the counter cough medicine will be choice at bedtime tonight. I do not have another infusion till Dec-19 and bet they will wait as see the doc on the 18th prior.What i found intresting the inflamation was all centered around the tumor, and with my extensive medical knowledge i have to take that as good sign. 😎 If you have to go to the emergency dept take as much information with you, I had all this information but never thought i was being sent there.All in All long day but pleased with the outcome even after coughing for seven hours last night. Bob PaulaC, Tom Galli, LexieCat and 1 other 4 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 7, 2018 Share Posted December 7, 2018 Seven hours of coughing- yuck. I’m so sorry. Your ED visit sounds like mine last month. Those poor docs have never heard of the super duper drugs we are taking. I brought a encyclopedia of info with me & told the docs what labs to draw! Good news on busting out of jail. Check out belly breathing on YouTube. It sure helped me with the pneumonitis. BridgetO, Robert Macaulay and LexieCat 3 Link to comment Share on other sites More sharing options...
LexieCat Posted December 7, 2018 Share Posted December 7, 2018 You're a trouper, Bob! Sounds like that tumor isn't happy about having its happy existence disturbed. Glad you went and had it all checked out. Your visit to the ER sounds a bit like my re-admission for the crepitus I experienced after my surgery--after the four-star treatment at the time of surgery I felt like I was back in the Motel 6. What counts most is coming out of it OK. Hang in there and hope the coughing is done soon. Tom Galli, BridgetO and Robert Macaulay 3 Link to comment Share on other sites More sharing options...
PaulaC Posted December 7, 2018 Share Posted December 7, 2018 Good morning, I hope you were able to get some rest last night. Your trip to the er sounded terrible. I’ll remember your advice and take stuff with me if I have go. Take care of yourself and get better. Paula Robert Macaulay and Tom Galli 2 Link to comment Share on other sites More sharing options...
Kleo Posted December 7, 2018 Share Posted December 7, 2018 Dang Bob! I'm glad they got you sorted out. How ya feelin now? Did they offer an antibiotic? Or just the cough meds...? Sounds like your tumor is having a bit of a pneumonitis- like temper tantrum...LOL Well I did my pet scan today...results are in. I'm not thrilled. FOUR new nodules. FOUR! Only one nod shows uptake- 3.3. Tumor shrunk alot but still shows uptake 3.6. And now a new spot on my right ribs...uptake 4.1....right where that dang spasm was too!😖 Does this mean my Durva isn't working? Ugh....what the heck man. 😢 Link to comment Share on other sites More sharing options...
LexieCat Posted December 7, 2018 Share Posted December 7, 2018 Aw, Kleo, I'm so sorry--that's gotta be discouraging. When will you see the oncologist to get a better idea what any of this means? Sending a hug (and a tissue). Kleo 1 Link to comment Share on other sites More sharing options...
Kleo Posted December 8, 2018 Share Posted December 8, 2018 I see radiation doc on Monday but not sure she'll know anything. I see oncologist on the 19th. I kinda expected the right side to show something though after that pain I had. Could be cancer starting in my ribs... or could be inflammation I guess. It's the same general area that my last PET in May said had a very small uptake...they suggested it was post traumatic change...whatever that is. 🤨 I can't worry bout those new little nodules yet. 3 of em have no activity sooo....... Not gonna sweat the little sh*t. LOL Will update when I get with the onc. Robert Macaulay 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 8, 2018 Share Posted December 8, 2018 I’m rooting for you Kleo! The Kleo-Bob show is better than Netflix! Tom Galli and Kleo 1 1 Link to comment Share on other sites More sharing options...
Recommended Posts