Living with lung cancer - Introduce yourself & come say hi

I don't know why I have issues posting on this site.

I have a couple of questions. I have a rare firm of lung cancer, LCNELC, but lung cancer is lung cancer, I guess.

I have been having some discomfort and occasional pain in my liver area but know I have spots there. However, I will get pains in other areas of my body. Had pretty bad pain on my right shoulder blade for a few days but that is pretty much a twinge now. Have had pain on and off in various places on my ribs but that comes and goes. Have had pain, like this morning, in my upper chest. Had pain above my left breast. Had pain on the side of the breast toward my arm pit that cones and goes. Asked the doctor, who has been doing this for over 29+ years, what was causing these pains and he said he didn't know! No discussion, that was it. Anyone with LC have pains like this? If so, anyone have a doctor that knows the cause?

I have read that but hard to believe he coukd exoect much improvement by Tuesday but I don't know how quickly they regenerate. Yes, read about being careful and how, tell my husband! I think family and friends are getting tired of me asking them to use hand sanitizer.

Yes, I have blood work done before my chemo. Thus woukd have only been my second round. Niw, he has me scheduled for Chemo then 5 days of Granix injections, then a PET scan. He had talked to me about getting a port, something I was not excited about. Now, has me scheduled for a port after the PET. Nurse calls me to set up the port procedure then reads his notes and it says, if needed. WTH! Does that mean if no improvement, or it has spread, no more chemo? With this cancer, they have given me no alternatives.
There is not a whole lot of support thru Sutter, not even a Support group.

@margot69, I can understand that you're concerned about low white blood cells. It is common for chemotherapy to lower blood count levels. White blood cells are responsible for fighting infection. So when they are low, you have to be careful to avoid infection. This is something you should be cautious about, but don't let it overly worry you. Here are some good tips on reducing your risk of infection while on chemotherapy:
- How to Lower Your Infection Risk During Chemotherapy https://www.verywellhealth.com/neutropenia-and-chemotherapy-2249337

As you and Merry have both experienced, white blood cells are always checked before the next chemo appointment to make sure they are high enough to get the next dose of chemo. The white blood cells recover after chemo, but after several chemo treatments, it may take them a little longer to recover. When my dad had to travel to get chemo, he was able to get his blood tested locally the day before to know if the counts were high enough to get chemo.

Is there a nurse on your care team who may be able to help answer questions for you?

Saw my dictir this morning. My Neutrophols are only .8! He us skipping Chemo this week, will recheck blood work on Tuesday, Chemo next week for 3 days the 5 days of Granix injections. Going to try and schedule me to get a port put in (shudder) then a PET scan. I was going to ask him how he thought I was doing but guess he can't answer that until after the scan. Asked him about the pains I am getting and he didn't know why. Had pain in my cgest and by my left arm pit this morning. Hard to believe he has done this fir so many years and has no answers. To,d him I found a couple of posts where people with this LCNELC are also getting Keytruda or Opvido but he says that is immunotherapy and he and Wakelee are wary of trying that on me because, this undiagnosed, they are sure I have some immune probkems going on since before this cancer diagnosis. Guess it is a wait and see. Wish he were more talkative.

Thank you, Merry. You are a world of knowledge and support. I actually joined a Chemo Support group on FB and everyone shares knowledge and experience. I did get a wig a couple of weeks ago and ordered a couple of the Chemo caps, which look horrible on me! Guess I can wear them around the house. I need more poof. Have read it is better to buzz your head rather then shave it. Yes, this is very hard as I am one that curls and styles my hair every day. Now, I haven't washed it for a week. I guess, since I have not been given many options for treatment, this almost seems futile but I do not want to die any time soon. I would talk to Wakekee before I make any decisions. Was thinking of maybe going to Scripps but, again, would be difficult and I hate to be far from home. Will see what he says this morning.

@margot69- Yes, hair loss is a big thing with women. Had you been told that you might lose it with this chemo? All the ifs I think are catching up with you. I think that you have to ask yourself if it's worth it. Or if your were to find out that a close friend had your cancer, what would you say if they were given a year? Between now and then there could be a new treatment or new medicine or even a cure found. Do you want to stick around for that? Do you have goals that you want to achieve this year? What had been your plans before you found out that you had cancer?
https://www.mayoclinic.org/tests-procedures/chemotherapy/in-depth/hair-loss/art-20046920

I will see what he says this morning. He was concerned how I would react to the Chemo and I don't even have a port. I am afraid of infection and getting sick. Yes, just been beside myself the past couple of days. I think starting the loss of my hair set me off. I don't know. Beginning to wonder if all this is worth it as he only gives me a year, maybe, with treatment.

Margot- My counts were down when I had chemo. It's very normal, although not ideal for sure. When you go for your infusion ask the nurses for more information about blood counts. I know that when my blood counts were bad from chemo it was disconcerting, I even was turned away because of it and missed one session. What is it that is upsetting you about this? That you will miss one or that it's not within a normal range? Chemo kills a lot of things so that it can kill your cancer too. Very upsetting. I'm glad that you are writing everything down.

Thank you, Merry.
I pretty much do all those things. I have started a notebook and write down questions for each visit and things I want to discuss. I do communicate electronically. Some doctors are better at responding then others. This Onc gives brief answers or often says it is better to discuss in person. Well, I don't see him that often and he is cutting diwn on office hours. Thanks! Have an appt this morning and woke up with my chest hurting. With my WBC and Neutrophils down, I worry.

Hi @lisdorn...can you tell us the doctor's name in Maryland? My wife's oncologist left Mayo and went there. We would like to stay in touch with him.