Living with lung cancer - Introduce yourself & come say hi

@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

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.

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.

@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?

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.

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?

The port is a semi-permanent IV in which blood can be drawn from each time blood tests are needed and they also use it for your chemo/immunology it avoids having to be stuck by needles constantly - also if you have "difficult veins" such as those which have a tendency to roll and seemingly always avid the needle resulting sometimes in several misses or manuring to get a needle inserted properly for either a blood draw or infusion; or if you have fragile veins or veins that tend to "blow" just after a needle or IV is set-up its your choice to have one or not - many choose to have one as it simplifies everything besides the constant being stuck constantly. the "if needed" was probably written in case you change your mind that there is a standing order for it to be done - or in case it becomes impossible to draw blood or insert an IV with out great difficulty the motto is "Due no harm" I at least commend him in that it seems to be a standing order that "if needed" you do not need to await getting the approval which could take only minutes or hours depending on how busy he is with other patients. It can also be used in other emergency situations etc by other health officials for blood draws, administering medications etc.

@margot- I thought that all chemo caused hair loss so my friend came to my house to give me a buzz cut. But just before she plugged in the "buzzer" she asked me if I was sure that I would lose my hair. She had me call the infusion nurse and I learned that the chemo that I would get would not necessarily cause hair loss. Margot- I was seconds away from losing my very long, thick hair! I only experienced hair thinning, not that anyone would have noticed because of all my hair.
Before each chemo session I put make-up on and dressed nicely, even if I had jeans on! It was a small thing, I know, but it made me feel human for a bit!

@margot- Can you ask him to talk more, explain more and suggest more? I'd be ready for some tranquilizers if I had a doctor who responded like a snail. Doctors have to step up or get out of the profession.

Margot-I really wish that you would move closer to Stanford. I know, I know you don't want to. If you aren't happy with your "team" then your attitude will be negative and this will effect your treatments and possibly your outcome. Attitude really does make a difference. It seems as if your need for better medical attention might outweigh that of your husband's right now. He could always get another dr, if for only for the time that you need to be there. You could stay at a Ronald McDonald house or even rent a small apt. Please think about this.