I bumped this post because I wanted to again stress how important it is to keep track of your general health. I know on TKI's we often want to blame anything and everything concerning side effects but there are times we are right.
Without going too far into old material I was diagnosed with Pulmonary Hypertension in 2014. Because I have no other related symptoms or medical diagnosis it is called Idiopathic PH. My PH specialist and Cleveland Clinic are convinced it was the Sprycel that caused the PH.
I have been on a great path with Letairis and Adcirca for almost a year after having a picc line with IV Remodulin for 9 weeks to treat the PH. I have been having some difficulty and saw Dr. Simon at Presby in Pittsburgh yesterday. When diagnosed my internal pressure was 75, this February it was 35, yesterday it is 60. I am fighting with fluid retention and the Letairis cannot be increased until I/they get a handle on the fluid. Unfortunately, the Letairis can cause excess fluids. Currently I am on 100mg of Lasix and it is still not removing the fluid where it should, although I swear I am desert dry. The PH causes permanent damage, it can be managed but there are serious side effects.
My only reason for this post and update is to once again remind everyone to be careful of your symptoms, pay attention to your body, and do not accept the 'there is nothing wrong with you', comment. I was at the local ER last Thursday, I had chest x-rays, labs, EKG, urine tests, and probably a few more I cannot remember. They sent me home because they could not find anything wrong. Many of us go to local doctors and hospitals and only see specialists a few times a year. I was in 3 hospitals last year, passed from place to place because all regular testing came back fine. By the time I was diagnosed I was passing out from low oxygen and I have damage to the right side of my heart.
Note: Pulmonary Hypertension can only be diagnosed with a right heart catheterization or an echocardiogram. The echo is not as accurate as the right heart cath but acceptable for initial pressure readings.
Please do not discredit how you are feeling or pass it off as a fluke. I would rather you go to the doctor or hospital and have nothing wrong than become ill because it is believed to be a 'side effect'.
I also want to stress the fact I believe that taking your TKI is important and following a plan with your oncologist will increase your chances of, or keeping, an undetectable reading. Unfortunately, they all have side effects, finding the right one and dosage for your situation may take a while but it is worth the time to increase your quality of life. My CML & PH doctors work well together and share information accordingly. They spoke on the phone several times during my appointment yesterday.
Pay attention to your body, ask questions, and never believe you do not have the right to question results. You know your body best and you know when you are not feeling well. Make someone listen to you and seek out second opinions.