I was released from a clinical trial which I was administered Xeloda. The cancer spread so the next treatment plan is taking Everolimus & Exemestane. I haven't started it yet as I was admitted to ICU last Saturday with Malignant Pericardial Effusions (MPE). My breast cancer caused a lining of fluid around my heart and in my left lung. I was transferred to a regular room and have two drainage tubes.
Is anyone else on this treatment plan? If so, any positive results?
I’ve been in your shoes.... 6 months ago. I was on Xeloda which was working well in liver Mets and then plural effusion both lungs and pericardial effusion . Two drains as well. I changed meds as my fluid was ER- and have been on lynparza for the last 4 months and doing great!! Fluid has not returned and my markers are at an all time low of 19! You can beat it back - hope and prayers to you. Happy to talk more just know that it’s about finding the right drug and staying positive. The drains suck but being able to breath and know that fluid it not building up is worth it. Keep the faith!!
I was taking Xeloda in a clinical trial and they discontinued the trial as my cancer had spread. I've been off of Xeloda for about 3 weeks, ended up in the emergency room for shortness of breath, had two tubes put in me to drain fluid from left lung and fluid from around my heart. Was diagnosed with Malignant Pericardial Effusions (MPE)! Could the Xeloda have caused that???
High probability then it was the Xeloda that caused the Malignant Pericardial Effusions!
Scary but I’ve wondered the same thing - about Xeloda. I’ve been thinking about and your drains. How are you doing? I know it’s hard but I just had my 6 month CT and I have “total resolution” of both heart and lung effusion. I’m sure they have been clear for a few months but It nice to get evidence. Let me know if you have any questions. I was about to work those drains so I was able to cap them off and only drain at night... so No hanging bulbs! Keep the faith!
Since I returned home after having the drains removed, I am so short of breath! Does this shortness of breath ever go away?
Oh wow - I went home with drains. Had them about 2 months - I was draining every day. If your short of breath I would check with your doctor right away. I’m afraid you may still have fluid. It wasn’t until I was drowning under 30mm daily they would consider removing. I keep a little longer given I was going on a trip out of country and didn’t want to worry. How long did you have drains? Please let me know if you have more questions - happy to help!
I’ve just started these two drugs on January 1st...Ibrance and letrazole stopped working
So far I’m just tired more than usual but it’s early days...started on the 10mg dose of everolimus which is the highest dose...eeek
All the best
I’ll be interested in your reaction/experience with this combo
Barb xx
I have only been on the Exemestane, which if you have seen any of my prior postings, you will know that it caused a lot of brain damage to me. It made my cerebellum send the wrong signals to my eyes causing them to move up and down and sideways. As I result I am suffering from dizziness and I have a rather severe problem with my balance. It is hell! What makes me angry is that I was seeing two oncologists and neither knew this was a possible side-effect, though I told them both that I was dizzy and having a balance problem. Tomorrow I start vestibular therapy, if that doesn't work, I don't know what I will do as my whole quality of life has been affected negatively. It is a challenge to stand/walk and it could be very easy for me to fall.
How long were you on it before you started noticing negative side-effects?
I don't remember exactly, but I think it gradually set in at the beginning and progressed. I really like my vestibular doctor. I asked her right away if she knew that this could happen with Exemestane. She said she did. It is so frustrating because my two oncologists didn't have a clue! Be very careful if you use it. I don't know how common it is as a side-effect but I do know that it has taken away so much of the quality of my life! At the therapy, you wear a vest that is hooked to a track in the ceiling. Then you are asked to walk when you are hooked up. I sway so much! When I am on my own walking, I pray that I don't fall. I have fallen three times.
I’m so sorry to hear of your side effects with Exemastane. I was on it for four years and it kept my cancer from spreading even went NED. I did gain like 25 lbs while on it and plenty of fatigue. Since I started this journey 6 1/2 years ago My memory is awful I wonder if it was the Exemastane Eventually it did stop working and cancer spread to spine.
I am on Afinitor and Exemestane. I have been having sporadic eye pain in my left eye during the night. It wakes me up and feels like a pin is being stuck in my eyeball. Very painful. I get a CT scan tomorrow and see my oncologist on Fri for results. Going to tell him. Have you ever heard of this?
Robin
I don't have pain like that but I can feel my eyes jumping around which is strange. Of course, that makes makes me dizzy and very off balance. Someone on here said that if you were very near-sighted, along with other visual issues, you are more likely to have occular issues.
Thank you. I am very near sighted. Had my CT scan yesterday getting results tomorrow. I am nervous.
Robin
I’ve been on this combination since November having had progression on Faslodex and Ribociclib. TM (CA15-3) reduced from >4000 to 1660 in 7 weeks, so we’re hoping it’s doing some good. No terrible side effects but I’m only on 5mg of Everolimus as Onc doesn’t see the point of increasing it while it appears to be working. A few mouth ulcers and strange cramps in calf and neck (but they could have been caused by sleeping heavily in odd position). I feel tired, but have since SBC reared it’s ugly head. Appointment next week and a CT scan to see if it’s working after 3 months. Fingers crossed for both of us.
Any experience with Exemestane or Everolimus?
Everolimus
Exemestane 
Faslodex or exemestane?
Exemestane and Afinitor
