KarenR Posted December 30, 2021 Share Posted December 30, 2021 Hello all, I am a patient at Dana Farber with stage IIIC adenocarcinoma with an EGFR mutation. I had 6 weeks of radiation and 3 rounds of chemo which ended on 7/29/21 and started on Tagrisso on 9/20/21. I just got back from a night at Brigham and Womens hospital in Boston due to blood clots. They had me on Heparin in the hospital and prescribed me Eloquis to take for most likely a few months. The blood clot is near my chemo port. I have a CT scheduled for next week and I am very nervous about the clots and also the contrast fluid used for the CT. Has anyone had any experience with blood clots? Thanks Best, Karen Link to comment Share on other sites More sharing options...
LouT Posted December 31, 2021 Share Posted December 31, 2021 Karen, Welcome to our forums. Sorry you need to be here. I myself only had surgery for my LC, but there are many others here with EFGR mutations and I'm sure you'll be hearing from them soon. In the meantime, we do have a forum dedicated to EFGR mutations and you may see examples of what you're looking for there. You can find that forum here. I'll be watching for your future posts, feel free to ask any other questions and you'll find willing people to respond. Lou Link to comment Share on other sites More sharing options...
KarenR Posted December 31, 2021 Author Share Posted December 31, 2021 Thank you! I posted on the EGFR forum. It’s like a roller coaster ride…. Link to comment Share on other sites More sharing options...
LouT Posted December 31, 2021 Share Posted December 31, 2021 Karen, You hit the nail on the head, a roller coaster is a very good analogy for this disease. But, hang in there we have many stories of struggle and success and I look forward to seeing you in that success group. Lou Link to comment Share on other sites More sharing options...
Judy M2 Posted December 31, 2021 Share Posted December 31, 2021 Blood clots are unfortunately pretty common with lung cancer, and Eliquis is the typical treatment. Definitely let your oncologist know about the clots and your concern about the contrast. I actually don't know if there would be a problem. Sorry you're going through this! Link to comment Share on other sites More sharing options...
Lisa Haines Posted December 31, 2021 Share Posted December 31, 2021 I learned I had a Pulmonary Embolism at the same time as my diagnosis back in March of 2015. I was hospitalized at that time due to a brain met 9neuro issues0. When they did my very first Chest CT, they found my lung tumor and the PE and I was put on Heparin. At discharge I was put on Lovenox injections and later when the oral blood thinners were introduced I was switched to Xarelto and stayed on it for over six years. They had originally thought I'd be on it for life, but because I have lived this long, they recently re-evaluated me and since I have never had any further PE or DVT they took me off. I've now been off a month and am doing well. I know quite a few LC folks who have been on blood thinners with great success. Eliquis is much like Xarelto and tends to now be preferred. PS: ALL my CT scans for the last 6+ years have been done with contrast without any issues. I also still have my port and have never had any problem. I have it flushed every six week. Wishing you the very best. Lisa Link to comment Share on other sites More sharing options...
KarenR Posted January 1, 2022 Author Share Posted January 1, 2022 22 hours ago, Lisa Haines said: I learned I had a Pulmonary Embolism at the same time as my diagnosis back in March of 2015. I was hospitalized at that time due to a brain met 9neuro issues0. When they did my very first Chest CT, they found my lung tumor and the PE and I was put on Heparin. At discharge I was put on Lovenox injections and later when the oral blood thinners were introduced I was switched to Xarelto and stayed on it for over six years. They had originally thought I'd be on it for life, but because I have lived this long, they recently re-evaluated me and since I have never had any further PE or DVT they took me off. I've now been off a month and am doing well. I know quite a few LC folks who have been on blood thinners with great success. Eliquis is much like Xarelto and tends to now be preferred. PS: ALL my CT scans for the last 6+ years have been done with contrast without any issues. I also still have my port and have never had any problem. I have it flushed every six week. Wishing you the very best. Lisa Thank you, I feel so much better knowing you have had CT’s with contrast and you have used your port with the blood clots. I can’t tell you what a relief it is to hear this. Also that you had been on the blood thinners for a while. I’ve always been pretty healthy and everything that comes up is really a shock. I’m so grateful to you for taking the time. I hope I can return the favor to someone else one day. Thank you. Best, Karen Link to comment Share on other sites More sharing options...
Roz Posted January 1, 2022 Share Posted January 1, 2022 Karen, Wishing you continued success with Tagrisso. Sounds like you have a great team at Dana Farber! I don't have the EFGR mutation but just wanted you to know that I was thinking of you! Best, Ro Link to comment Share on other sites More sharing options...
RJN Posted January 3, 2022 Share Posted January 3, 2022 Just my penny’s worth: I had a blood clot diagnosed in my shoulder at the same time as LC. Was sent immediately on blood thinners, first some type of injectable and now eliquis. I have had 6 CTs and a couple of MRIs and PET scans, also with contrast each time, and have had no questions or issues with this. It isn’t even on any of the pre-CT questionnaires here, so I assume it really isn’t a problem. Link to comment Share on other sites More sharing options...
KarenR Posted January 3, 2022 Author Share Posted January 3, 2022 Thank you RJN! Link to comment Share on other sites More sharing options...
KarenR Posted January 27, 2022 Author Share Posted January 27, 2022 Update: The CT went fine and showed a stable tumor/slightly smaller. :) The port is what caused the blood clots and it’s coming out on 2/1. The port removal was delayed due to an increase in COVID hospitalizations, and I’m so grateful for all of the hospital personnel who have kept going through this pandemic! Best to all, Karen Link to comment Share on other sites More sharing options...
Tom Galli Posted January 27, 2022 Share Posted January 27, 2022 Wonderful news Karen! Stay the course. Tom Link to comment Share on other sites More sharing options...
LouT Posted January 28, 2022 Share Posted January 28, 2022 Karen, You're making progress. Once you get the port out they'll be less to worry about on that front. The rest of the news sounds encouraging. I'm glad to hear it. Lou Link to comment Share on other sites More sharing options...
Karen_L Posted January 29, 2022 Share Posted January 29, 2022 Karen, So glad to hear they've removed the port. I had a PE, which was diagnosed via a CT with a bunch of contrast. I'm on Eliquis indefinitely. My pulmonologist said to get a pulse oximeter and check every once in a while-- if the number drops to a certain range, I have instructions for what to do. I also was given the base number for safe exercise, since I'm rather a nut about that. Luckily, my pulmonologist understands that and is supportive. Good luck with everything moving forward. Karen Link to comment Share on other sites More sharing options...
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