Blessrad Posted October 3, 2015 Share Posted October 3, 2015 I was diagnosed with stage IV NSCLC on September 3, 2015. Besides the tumor in my left upper lung and nearby nodes, I had a tumor removed from my right forearm. I am having an MRI on October 9 to check for brain mets. I just turned 50. I had a port placed this morning and was told there would be slight discomfort and to take Tylenol or ibuprophen for the discomfort. Now the whole area is bruised, there is discomfort when I swallow or turn my head and it hurts to lift my arm. I' wondering if this is common. Also, I don't see the nurse educator regarding chemo until next Thursday and won't start until after that appointment. I'm a bit frustrated about that. I would like some input regarding experiences with port placement. Does it always feel this uncomfortable? It has kept me awake. I took a hydrocodone but the pain woke me before it was time to even take another dose. It's odd because I have a pretty high threshold for pain. Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 3, 2015 Share Posted October 3, 2015 Welcome here. We share a disease and an experience - a port. I also experienced discomfort from my port. There was bruising for several days and pain when I repositioned my chest or moved my left arm. Those were told to me before installation and I was further told if I developed a fever, to report that to my doctor immediately. So, I'd say your discomfort matches mine and mine did pass in a couple of days. Having a port for chemo was so much better that the IV stick battle that ensued during my first and second line treatments. I used up chemo nurses like the interest rising on the national debt. Once, I used every nurse in the clinic and they needed to bring a CT scan technician to find a cooperating vein. Hydrocodone caused me sleep difficulties. I get itching sensations all over my body. I find Tramadol HCL a better pain medication for me. Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
CindyA Posted October 5, 2015 Share Posted October 5, 2015 Hi blessrad, How was the weekend for you? Did the pain ease up? Looking forward to seeing how are you.... Cindy Quote Link to comment Share on other sites More sharing options...
Blessrad Posted October 5, 2015 Author Share Posted October 5, 2015 Hi Cindy, Thanks for checking on me. The pain has eased somewhat. It is still quite uncomfortable and I still have not slept through the night. I almost called the nurse about it today as it is warm, but not hot, but decided not to. The blister seems to look a little better today but even my shirt against it is uncomfortable. I hope things are going well for you. Beth (Blessrad) Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
CindyA Posted October 6, 2015 Share Posted October 6, 2015 Hi Beth I wonder if it is a little infected? I would call their office (before it closes today) to see if what you are going through is normal and if there is some type of numbing topical cream that you may be able to put on it or maybe even something cold? Please keep us posted. Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
bjacksontex Posted October 9, 2015 Share Posted October 9, 2015 Hi Beth, So you are having your MRI tomorrow. Let us know how it goes and if the pain from your port has eased. Sounds like you & I have some similarities in our stories. I saw from your post on another thread that your mom had lung cancer in 2008, and now you. Same here. Mom had been totally healthy seemingly right up to the time in Feb. '08 when she couldn't shake the flu. She was 78. So, she was admitted to the hospital for tests. After being told it was pneumonia, then Legionnaires Disease, the bronchoscopy showed stage IV NSCLC. Even knowing there was a genetic link, I still smoked. But in the back of my mind, it nagged at me. Until I finally asked the doctor for a CT scan. Bingo! Right lower lobe is coming out Oct. 27th. I learned today that they will wait until the pathology results two weeks after surgery before they decide if I'll need chemo, etc. Everything about this seems to be "wait, wait, wait." I'll be thinking of you in your battle against this. My sister likes to tell me our Mom is up there rooting for me. Take care, Barb (now ex-smoker) Sent from my iPad using Tapatalk Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Blessrad Posted October 10, 2015 Author Share Posted October 10, 2015 Hello everyone. The MRI went fine. I was not a big fan of the tight little tube and cage over my face, but all things considered, it was a walk in the park. The port is healing slowly. Yesterday was the first time it was accessed and it was not bad at all. Way easier than an IV. I do have to wait until next week to get the results but I plan to stay busy to keep my mind off it. I also start round one of chemo on Thursday. Barb, your story does sound a lot like mine. My mom was hospitalized for pneumonia in December of 07 and diagnosed with stage IV NSCLC in March of 08. She passed over in August that same year. I took great comfort knowing she was no longer in pain and had joined my father who also passed from another form of cancer in 1994. I had quit smoking in 2003, when she went on oxygen. Now that I have stage IV as well, sometimes it scares to to think about the suffering my Mom endured. At this point, I feel pretty good with some SOB, occasional chest pain and issues with my right forearm and hand. The mets was to my right ulna and I had pretty invasive surgery to get it. I also seem to have a headache everyday and occasionally blurred vision. I have no way of knowing what the future holds, but I choose to believe in great things and the possibility of a long life. Peace and light to you all, Beth bjacksontex 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 10, 2015 Share Posted October 10, 2015 Beth, Glad the port area is healing. You've already experienced the benefit I note. I ask my doc to prescribe a Xanex before I have long scans - PET or MRI. You might think about that to eliminate future stress. Keep us posted and stay the course. Tom CindyA 1 Quote Link to comment Share on other sites More sharing options...
elizac1954 Posted October 11, 2015 Share Posted October 11, 2015 Hello everyone, I had a port placed and it seemed to heal okay. Im still baffled about all of this as I was newly diagnosed in august 2015, a shock to say the least. I thought I had a bad cold. This is and has really changed everything I have ever new in my life. The one thing I find , is when they access my port and flush it , It is almost the same head rush I got in the hospital with the morophine, which I do not like. I ask about this and never really get an answer. I also experience some real bad symptoms during infusions. Feels like im blasted of my *ss. Sorry had to say it that way . Im so scared as to what they are doing to me , I feel like a test subject.. any thoughts on how to deal with this ...Hell I cant seem to get a direct answer, all doctors say similar to something different all the time to me .. and this is my cancer team . lol Quote Link to comment Share on other sites More sharing options...
CindyA Posted October 16, 2015 Share Posted October 16, 2015 Hi elizac1954, I'm glad to hear your port is healing okay. Have you talked to your doctor about what you are feeling during the infusions? I know some people who travel with a notebook religiously so when symptoms or questions come to mind you can jot them down and then write your doctors answers on them. I know sometimes some people talk with a nurse navigator. Is there one on your medical team that you can talk with to help you understand your treatment plan? Also, can someone go with you to your appointments who can take notes for you? If you would like to speak to someone one on one who has been in a similar situation please let me know. We have the LifeLine program (free) which connects you with an actual person who can mentor you and let you know what helped them. Here is the link if you want to get started. http://www.LUNGevity.org/lifeline I can let my colleague know that you will be reaching out if you want, just let me know. We care about you! Cindy Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 16, 2015 Share Posted October 16, 2015 Elizac, Sorry, I overlooked your post on October 11th. I do recall the flushing solution giving me a rush also. Also, it had an anesthesia like smell. I never asked about this and perhaps I'll ask my doc on my next consult. I hope you've shared the bad symptoms during infusions with the chemo nurse. Everyone experiences side effects but these usually take a couple of days to settle in. Bad symptoms during the infusion are serious and should be reported immediately to your chemo nurse. I was scared and I also felt like a "lab rat" test subject many times. I wish I had a solution on how to deal with these feelings. Don't do what I did. I bottled them up and ended up with a full blown case of deep depression that required medication and counseling to address. Find a support group in your local area to attend and share your feelings. Believe New Eagle, PA is near Pittsburgh and there should be many in the area. You might try LUNGevity LifeLine Support at www.lungevity.ort/lifeline Direct answers about how treatment is affecting disease, especially during chemotherapy, are hard to come by. You'll get maybe three or four infusions, then have a scan. After the scan, you may get answers. But, I've had many scans when clear answers were not given. The extent of change in tumor size was just not noticeable. This, unfortunately, is what makes cancer treatment so frustrating. We have this expectation of getting sick, taking a pill (undergoing treatment), and getting better. Then we get cancer, undergo treatment, and don't. We don't even know if we are going to get better. I know my oncologist well after nearly 12 years of association. He still doesn't give me direct answers. For what it is worth, I am still scared! Stay the course. Tom Quote Link to comment Share on other sites More sharing options...
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