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Moderator

Living with lung cancer - Introduce yourself & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Mar 2, 2017

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?

Interested in more discussions like this? Go to the Lung Cancer Support Group.

All_in_1963 | @burrkay | Feb 12, 2019

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

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Merry, Alumni Mentor | @merpreb | Feb 12, 2019
In reply to @margot69 "These stories are so encouraging! I will be getting my second round of Chemo this week..." + (show)
@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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Merry, Alumni Mentor | @merpreb | Feb 12, 2019
In reply to @lizdorn "21 years?? Wow. If that doesn’t give all of us NSCLC hope I don’t know what..." + (show)
@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 | @margot69 | Feb 11, 2019

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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olgamarie | @olgamarie | Feb 11, 2019
In reply to @margot69 "These stories are so encouraging! I will be getting my second round of Chemo this week..." + (show)
@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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1 reply
margot69 | @margot69 | Feb 11, 2019

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??

REPLY
2 replies
lizdorn | @lizdorn | Feb 11, 2019

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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1 reply
Merry, Alumni Mentor | @merpreb | Feb 11, 2019

Welcome @lizdorn . You've come to the right group so I'm glad that you found us. Have you been operated on or had a biopsy done? I'm a stage 4 NSCLC too and have faked my doctors out for 21 years! Doncha love it!

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lizdorn | @lizdorn | Feb 11, 2019
In reply to @reibur1951 "The main tumor in lung and the rest of the lymph nodes one in the left..." + (show)
@reibur1951

The main tumor in lung and the rest of the lymph nodes one in the left arm pit and chest are are all stable and not growing... just that with the Supraclavicular lymph node acting up for now kicks him out of the original clinical study - he was done to the he went through the 1st 12 weeks week 1 was carboplatin, nab-Paclitaxel/abraxane (both chemos) & Pemrolizumab (immunology) and weeks 2 & 3 nab-Paclitaxel/abraxane (chemo) only with flying colors so to speak no adverse reactions to the drugs, very little hair loss (in fact grew back thicker), and only a little neuropathy in his feet reaching only to about the base of ankles in other words one who others would be very envious of or would like to "punch his lights out" did not have to take any of the 3 bottles of extra medication for nausea & vomiting prescribed; no diarrhea, loss of appetite etc. At least he gets to be in what the call Phase II

Yes we had much the same type weather... I had a nice warm water bed and that where I stayed most of the time in front f the bedroom tv, laptop and smartphone by my side... was diagnosed in Oct 2017 in fact we know before he was out of the biopsy of the lung that he had cancer there was PET scan etc and by Dec 15th he started his treatment... think we were in Indy every week or every other week in between Oct-Dec before we started the 12 week trips till nid April - only missing 3 sessions (delays) one we landed in the ditch on Jan 12th it was a rain/sleet weather with probably 2-3" or more on the highways before the snowplows was out - after getting out we headed home - the other 2 was because his immune count was down and they would not do the treatments (the "Do no harm") ... besides that we have made it through the death of his father on June 29th 2018 (he was not making enough red blood cells & having transfusions every 2 weeks) & his mother who died Dec 28th - of Acute Myocardial Infraction, near 100% blockage, sepsis, c-diff, Stage 3 Acute Onset Kidney disease beside her full right side stroke which she had been in nursing home since Dec 3, 2004 I sat with her and watched her die slowly from Dec 19-26 24/7 all but for about 3 hours she was comfort care only as was DNR no advance life sustaining support and if the did surgery to alivate blockage she would of possible not made it or done more damage than good

Just have to hope for the best and he does as well as he did on the first round but with only one chemo he should and it is to be similar to the nab-Paclitaxel/abraxane

How are you coming along @olgamarie ?

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Wow. You are amazing!! What a book of lessons you have. Everyone says “keep fighting “. I think we all just say “keep living”. Good luck!

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lizdorn | @lizdorn | Feb 11, 2019

Hi everyone. My name is Liz. I have nsclc. It’s coming up to 3 years. My oncologist originally told me I had 6 months to live. Haha!’ I am in between trials. Waiting for Mayo to review my medical history and hopefully find me a trial. Look forward to chatting

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