Deb W Posted March 23, 2021 Share Posted March 23, 2021 Hi friends, I have been holding off on writing this update because I realize there are people here with a similar treatment plan (maintenance Keytruda), and I didn't want them to feel discouraged. But, I also thought of those of you who might not be satisfied with your oncologist and feeling overwhelmed by changing. I can't stress enough how important it is to have a good relationship with your oncologist. I kept thinking I could overlook the poor communication because he knew the science so well. Briefly, my history: diagnosed with 1B in 4/2019 and had surgery - no other treatment because no cancer showed in any of the lymph nodes that were tested. In 4/2020 I was diagnosed with Stage IV metastatic lung cancer. I was treated with the triplet, Alimta and Keytruda, then just Keytruda for about 7 1/2 months and developed toxicity causing colitis and the Keytruda was stopped at the end of December. Two weeks ago i had an eight week follow up CT scan (scans were clear in 8/20, 10/20, 12/20) that showed new areas of growth. A PET was ordered and confirmed that new cancer cells had formed. So, even though Keytruda worked on my original cancer, it didn't prevent me from having new cancer. I wondered why my body didn't recognize those cancer cells. It was explained to me that a third of the people it will work on and they go on maintenance and they don't have a recurrence; 1/3 of people it will work on, but then new cancer forms (me). What was unusual about my case is that often when a person has extreme side effects/or toxicity, it generally means that the drug worked. Then there is 1/3 that it won't work on at all. Without going into detail, I switched oncologists. Communication was not good and the delivery of the latest information about a recurrence was conveyed in a cold way. I tried really hard to maintain a relationship with this oncologist, and the last thing I wanted to do was make a change at this stage when I felt so vulnerable. I knew at this point I needed not only a smart oncologist, but a kind and caring one as well. I did find one with the help of this community. I have the MET Exon Skipping 14 mutation so I will be starting Tabrecta as soon as it comes in - maybe as soon as Thursday. A brain MRI (major scanziety with this one) has been ordered, but now waiting for a slot to open. If anyone would be willing to offer information on their experience using Tabrecta, I'd really appreciate hearing from you. So, I start again...Deb Link to comment Share on other sites More sharing options...
LexieCat Posted March 23, 2021 Share Posted March 23, 2021 I'm sorry, Deb. And yeah, oncologists don't have to have a perfect personality, but a bit of compassion/empathy goes a long way. I'm glad you've found someone you can work with. I hope the Tabrecta knocks this thing out. Did you just recently learn about the mutation? Or how did that come about? Sending hugs/good vibes your way. Link to comment Share on other sites More sharing options...
Judy M2 Posted March 23, 2021 Share Posted March 23, 2021 Deb, I'm sorry that you've had progression and hope your new oncologist is a better fit. I know how important a doctor's attitude and manner are. Fingers crossed for your MRI and hope the Tabrecta is more effective. Sending you good vibes. Link to comment Share on other sites More sharing options...
MBinOregon Posted March 23, 2021 Share Posted March 23, 2021 Hi Deb, Urgh, this sucks so so bad. I'm sure you'll soon hear from other folks with Tabrecta experience here, but I'm glad you changed your oncologist to someone you can work with (I'm on my 4th oncologist - as Tom G said a while back "you're paying for the service" and it is your money.) I hope you get the MRI appointment asap and I also hope you tap into your inner warrior and feel the support from your support system (including us!). Sending prayers and hugs, MB Link to comment Share on other sites More sharing options...
TJM Posted March 23, 2021 Share Posted March 23, 2021 If I have a recurrence I also will be changing my oncologist. He and I are not on the same wavelength. As long as we are in the "cook book" phase of treatment he will do. By cook book I mean just follows all protocols. There are an unbelievable number of cook book Engineers out in the world. Never use their skills to come up with out of the box solutions. As an Engineer I quickly learn to ignore them, because I am as far from cook book Engineer as I can be. MBOregon....I thought we had the same Onc? Have you switched again? KP in Longview. Peace Tom Link to comment Share on other sites More sharing options...
MBinOregon Posted March 23, 2021 Share Posted March 23, 2021 Hey, Tom, nope, I've never had KP as my insurance in my life and I never will. All 4 of my med onc's have been within the same "system" although my insurance allows me to go to all other systems as well, but given it is the only cancer center rated "comprehensive" in the area, I'll be sticking with them despite my onc changes. I think you mentioned in one of the post a while back that you and someone else on the forum belong to a same clinic. 😉 MB Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted March 23, 2021 Share Posted March 23, 2021 I'm sorry to hear this update, Deb, but I hope you find the new oncologist to be warmer and a better communicator. Please let us know how you are doing when you start the new medication. Link to comment Share on other sites More sharing options...
TJM Posted March 23, 2021 Share Posted March 23, 2021 2 hours ago, MBinOregon said: Hey, Tom, nope, I've never had KP as my insurance in my life and I never will. All 4 of my med onc's have been within the same "system" although my insurance allows me to go to all other systems as well, but given it is the only cancer center rated "comprehensive" in the area, I'll be sticking with them despite my onc changes. I think you mentioned in one of the post a while back that you and someone else on the forum belong to a same clinic. 😉 MB There is. Dang Chemo brain...😁, which is my standard go to line as my memory becomes challenged by age. Good luck. Link to comment Share on other sites More sharing options...
Deb W Posted March 24, 2021 Author Share Posted March 24, 2021 Lexie - the MET mutation was discovered by my 2nd opinion oncologist last May - although the first oncologist had the information, but it was overlooked. I had already started on the triplet and it was working so they continued with it. Link to comment Share on other sites More sharing options...
ConcernedSib Posted March 24, 2021 Share Posted March 24, 2021 Dear Deb, Sorry to hear about your recurrence, & lack of empathy from your onc. Hope things will go better for you when you change onc. My sister diagnosed in Dec 2020 with bm nsclc with the same gene mutation as you have. She received 2 weeks of WBRT tx then put on Trabecta in late January. So far, so good with virtually no side effects - no swelling. Just had an MRI - results pending. She has an excellent onc with a supportive team of MDs, RNs, social workers, etc. on a 24/7 basis. At MDs office, a specialty nurse explained ins & outs of starting the drug. Also since the drug is delivered to her by a specialty pharmacy, the pharmacy called & thoroughly explained how to take the med(as well as being available for any ?s she may have). Through her insurance, she has another RN who calls her once a week to see how’s she is doing. This nurse is like an angel who is full of compassion & knowledge. Deb, my hope for you is that you get with a team of caring & compassionate medical professionals who give you all the advice, care, knowledge, & compassion that you deserve. Good luck & the best to you in your journey. Link to comment Share on other sites More sharing options...
Deb W Posted March 24, 2021 Author Share Posted March 24, 2021 Hi ConcernedSib: Thanks for sharing and your kind words. Hoping your sister has a good MRI result. I think I found the right onc this time...it's my 3rd and they are all from different Health Systems! I just received a voicemail from Novartis and wondering if it's regarding finances. She will call back tomorrow. I think the copay is way high on this drug. What was your sister's experience with copays for this drug if you're comfortable sharing. Deb Link to comment Share on other sites More sharing options...
Steff Posted March 24, 2021 Share Posted March 24, 2021 Deb- I hope you find this new oncologist much better than the lasts. It seems if we do not like or have little faith in our oncology team, dealing with cancer is more stressful. Hopefully this one knows about good communication! That being said, I am sorry to hear about your recurrence and that Keytruda wasn't the magic bullet for you. Hopefully your next targeted therapy will be the ticket! Take Care, Steff Link to comment Share on other sites More sharing options...
LouT Posted March 24, 2021 Share Posted March 24, 2021 Deb, So sorry to hear about the recurrence and the fact that you didn't have a supportive Oncologist. I have been blessed with my medical team (Oncologist, Surgeon, Pulmonologist) and I realize not everyone has the same. You should surround yourself with people that are focused on you and your physical, emotional and spiritual well-being. Skilled physicians are adept at all those aspects of patient care. Also; stay strong, you have been here before and returned victorious. You've got all of us pulling for you and you're on my prayer list. Please keep us updated. Lou Link to comment Share on other sites More sharing options...
KM_NRP Posted March 24, 2021 Share Posted March 24, 2021 MB Thank you for sharing your story. I read it today. Being able to know others experiences is helpful to me. Also, that A personality. ~KM Link to comment Share on other sites More sharing options...
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