bes Posted February 25, 2018 Share Posted February 25, 2018 Just a update on my hubby starting last week my husband's pain level has been decreasing until he now has very little pain and is on no pain meds whatsoever; he was taking morphine and another opiate to control pain and breakthrough pain plus Tylenol. I am stunned, happy and just don't know really what to expect next. He has only had 2 treatments of Keytruda with the next one scheduled for March 6th with a CT scan on the 20th to see how things are progressing. Since this is new to us we don't know what to expect even the Palliative care Dr was surprised told us to keep the meds incase he might need them. My husband felt so good today that he wanted to try to go to the movies without me--I was apprehensive but said nothing; you don't know until you try. I just got a call he is in his seat and waiting for the show to begin. I know this won't last forever but we are enjoying while we can. If anyone else has experience with Keytruda could you please post it would help so many of us on this journey. Thanks Link to comment Share on other sites More sharing options...
BridgetO Posted February 25, 2018 Share Posted February 25, 2018 Hi bes, Good news! Its important to live one day at a time and it sounds like your hubby is doing this. Yay for him! Bridget O Link to comment Share on other sites More sharing options...
Steff Posted February 25, 2018 Share Posted February 25, 2018 Bes, I am happy to hear about the decrease in pain your husband is having and that Keytruda is tolerable for him. I am including a link to my regular updates on my mom - she has been on Keytruda since July. Mild side effects and she is feeling great! I hope things continue in a good direction for your husband. http://forums.lungevity.org/topic/44225-finding-hope-in-my-moms-cancer-journey/ Link to comment Share on other sites More sharing options...
Tom Galli Posted February 26, 2018 Share Posted February 26, 2018 Bes, This is indeed wonderful news. Going to the movie alone is a grand idea. Next, go on vacation together. Some where warmer than New Jersey! Stay the course. Tom Link to comment Share on other sites More sharing options...
bes Posted February 28, 2018 Author Share Posted February 28, 2018 Thanks so much for the replies and Steff so glad your mother is doing fine what a journey she has had. Link to comment Share on other sites More sharing options...
bes Posted March 31, 2018 Author Share Posted March 31, 2018 Update on Hubby he had ct scan and everything is either stable or shrinking which is great news he is scheduled for another keytruda treatment on April 17th. Keytruda has caused his thyroid levels to be high so he has started meds for that this week; other than being tired he tells me he feels great. Such great news after weeks of pain and being nauseous. The large mass that was on his ribs had decreased from 1 1/2 inches to 14mm and the other large nodule he had went from 2.4cm to 1.7cm plus several smaller nodules have all decreased in size. Hard to believe that this all happen with only 3 treatments. The Dr. tells us it is the combination of radiation treatments, Keytruda, and good attitude. Link to comment Share on other sites More sharing options...
BridgetO Posted March 31, 2018 Share Posted March 31, 2018 Great news! I'm happy to hear that the treatment (and attitude) is working. Bridget O Link to comment Share on other sites More sharing options...
LaurenH Posted April 13, 2018 Share Posted April 13, 2018 That's great news, bes! Thank you for sharing an update. Please continue to keep us posted on how you and your husband are doing! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
bes Posted May 24, 2018 Author Share Posted May 24, 2018 Well it's been another 3 treatments of Keytruda and another CT Scan today the results as not as good as we were hoping. Nodules and lymph are stable or shrunk a little but the concern now is that was area that had reduced is size to 13 x 21 mm is now 16 x 30 mm. There is a notation on the document stating that it could reflect disease progression-- we hope not. He has been having more and more difficulty breathing since the last 2 keytruda treatments and went from walking without aid to having to use a wheelchair again--I hope this is just a bump in the road. We have a dr. appointment this Tuesday along with bloodwork and another treatment. I wished the same person read the ct scan every time you had one done but I know that's impossible--every result is different and this one had a lot more detail than any of the others--don't whether more is better or not. I am the type of person that prints out the results and then go online to see if I can figure it out--perhaps not a good idea. It's just strange at the bottom of the page it says Findings? then Decreased size of mediastinal lymph nodes?? and then Esophagitis??. It certainty makes me feel as though the Dr. that read the ct scan wasn't sure. Link to comment Share on other sites More sharing options...
BridgetO Posted May 24, 2018 Share Posted May 24, 2018 I hope the doctor you are seeing will look at all the scans and say what he or she thinks.. is it a medical oncologist? Does your husband have a pulmonologist? I was really impressed when my pulmonologist put up a series of CT scan images for me to see and pointed out some very small differences from scan to scan and interpreted the significance of various small abnormalities. Let's hope the news from the doctor is good. Bridget O Link to comment Share on other sites More sharing options...
Tom Galli Posted May 25, 2018 Share Posted May 25, 2018 Bes, I agree. When I've had confusing scan reports, I called or messaged my medical oncologist and asked that actual film be available during our consultation. I have a very seasoned medical oncologist and he's treated me from day one. We've called up actual scans on the computer and looked at what the radiologist saw, then looked at historicals and things became less confusing. You are right about having different radiologist doing interpretation. Your medical oncologist can always send the scan back for reinterpretation. I'd mention that. Stay the course. Tom Link to comment Share on other sites More sharing options...
bes Posted May 25, 2018 Author Share Posted May 25, 2018 We see the oncologist this Tuesday plus bloodwork before; he does go over all results and explains everything clearly and we do has access to seeing the ct scan with explanations. Our Dr. is right up front with his opinions/diagnosis if he thinks this is disease progression he will tell us if he is not sure he will order pt scan or something else if needed. Link to comment Share on other sites More sharing options...
LaurenH Posted June 8, 2018 Share Posted June 8, 2018 Hi, bes, Just wanted to check in and see how you and your husband are doing. How did the latest appointment go? We're thinking of you! Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
bes Posted June 8, 2018 Author Share Posted June 8, 2018 Hi Lauren So far things are still going ok Dr says all tumors and nodules are still shrinking. The area that showed an increase he believe was inflammation so he is on antibiotics and low dose prednisone; we return to the dr in a few weeks. His breathing difficulties have not changed due to severe COPD. Thanks for asking Link to comment Share on other sites More sharing options...
BridgetO Posted June 8, 2018 Share Posted June 8, 2018 Shrinkage is a good thing! Yay. Bridget Link to comment Share on other sites More sharing options...
LaurenH Posted June 11, 2018 Share Posted June 11, 2018 Hi, bes, I'm glad to hear that you got a good report from the doctor! Has he tried pulmonary rehabilitation to help with his breathing? Here's some information from LUNGevity's website. I hope this helps! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Diniw Posted August 10, 2019 Share Posted August 10, 2019 Bes. My doctors told me that the 2 most important side effects of Keytruda are shortness of breath and diarrhea. Maybe ask his oncologist about the shortness of breath. I had to come off Keytruda because of severe diarrhea. 🙏 Link to comment Share on other sites More sharing options...
bes Posted August 10, 2019 Author Share Posted August 10, 2019 Hi Diniw My Husband always had shortness of breath; he had severe COPD. I'm sure you didn't read my previous post but my hubby passed away in March. Good luck on your journey wishing you the best. Link to comment Share on other sites More sharing options...
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