Living with lung cancer - Introduce yourself & come say hi

Welcome to the Lung Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with lung cancer or caring for someone with lung cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentors and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself?

These stories are so encouraging! I will be getting my second round of Chemo this week then scans sometime. I see the local Onc tomorrow but he does not seem very receptive to new info. Have forwarded a lot of this to Dr. Wakelee at Stanfird but have not heard back. Traveling and having to stay somewhere really is not an option or something I would feel comfortable doing and my husband shoukd stay close to his doctors as he is having some heart/BP issues. Wakelee is supposed to be one of the best in this field and you woukd think they woukd cone up with something. I think they want to see how I respond to the Chemo. I have just been so depressed the past few days. How do you get them to listen??

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@margot69

These stories are so encouraging! I will be getting my second round of Chemo this week then scans sometime. I see the local Onc tomorrow but he does not seem very receptive to new info. Have forwarded a lot of this to Dr. Wakelee at Stanfird but have not heard back. Traveling and having to stay somewhere really is not an option or something I would feel comfortable doing and my husband shoukd stay close to his doctors as he is having some heart/BP issues. Wakelee is supposed to be one of the best in this field and you woukd think they woukd cone up with something. I think they want to see how I respond to the Chemo. I have just been so depressed the past few days. How do you get them to listen??

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Hi Margot, I had the same trouble as you with a doctor and there was no way he would listen to me. As I was checking out, I told them I would not be back and found someone to replace him. It is so difficult when you are going to the best and he doesn't HEAR you. Bring a close friend, relative with you to your appointment, so when you speak to the doctor that person can affirm what you are saying with a nod or verbal reply. If not that, when the doctor comes in, look at him square in the face and tell him I want you to listen to me in a firm voice. Maybe these suggestions may work. If not, remind yourself that you are doing the best you can and you chose the best. And this should being out a "best"outcome. Blessings.

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My husband goes with me but is pretty non-committal. I gave been bringing a recorder but need a new one.
I don't hesitate to speak up. Unfortunately, there are few specialists in my area and few good ones. That is why I went to Stanfird but it is too far to travel for regular treatments. Dr. Wakelee, at Stanford, sent her notes to the Onc here thus the decision to do this Chemo combo. They admit there is little known in the way of treatment for this type of cancer. Money and research gies to the types most people get. I have found some info and have sent it to her. Bith cases being treated at Sloan. Today, I see my neutrophils are way down and I sure don't want those shots!

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@lizdorn

21 years?? Wow. If that doesn’t give all of us NSCLC hope I don’t know what would. When I started the chemo in 3-16 I had everything done. In January of 2018 my oncologist said that she has run out of treatments for me and that should except this and go do my bucket list. Well you know what I wanted to do with that bucket. Anyways I call the National Institute of Health in Bethesda Maryland and was able to get in on a trial. At my 7th treatment my team of doctors told me that the 2 large tumor on the right side had decreased by over 60% but there are 3 little ones that were continually getting bigger. So of that trial. I live in Wisconsin. To make that trip every 28 days of 11 hours, needless to say I searched for someplace closer. I am in the beginning steps to see if Mayo can help me.
Wow. 21 years. That is fu””omg awesome

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@lizdorn – Good morning. It must be very very upsetting to hear that you have to pack up your bag for your next life from a doctor. Have you been told that you have Multifocal adenocarcinoma? It means many nodules at once. I'm glad that you are trying to get into see a doctor at Mayo Clinic. When you said that you had everything done are you including surgery? How are you feeling?

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@margot69

These stories are so encouraging! I will be getting my second round of Chemo this week then scans sometime. I see the local Onc tomorrow but he does not seem very receptive to new info. Have forwarded a lot of this to Dr. Wakelee at Stanfird but have not heard back. Traveling and having to stay somewhere really is not an option or something I would feel comfortable doing and my husband shoukd stay close to his doctors as he is having some heart/BP issues. Wakelee is supposed to be one of the best in this field and you woukd think they woukd cone up with something. I think they want to see how I respond to the Chemo. I have just been so depressed the past few days. How do you get them to listen??

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Good morning @margot. I'm so sorry that you have been depressed. This whole journey has been quite a struggle, more due to personality than competence. This can have quite an impact on your health. Why don't you want the shot to bring up your white blood cells?
Here are a few suggestions on how to get your doctor to listen.
https://health.usnews.com/health-care/patient-advice/articles/how-to-talk-so-your-doctor-will-listen

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Wow…that's great! See there…never give up!

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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.

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@merpreb

Good morning @margot. I'm so sorry that you have been depressed. This whole journey has been quite a struggle, more due to personality than competence. This can have quite an impact on your health. Why don't you want the shot to bring up your white blood cells?
Here are a few suggestions on how to get your doctor to listen.
https://health.usnews.com/health-care/patient-advice/articles/how-to-talk-so-your-doctor-will-listen

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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.

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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.

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@merpreb

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.

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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.

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@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

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@merpreb

@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

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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.

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@margot69

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.

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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.

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@margot69

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.

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@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?

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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.

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