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mam12198

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Hi, I’m Robin from Connecticut. I was diagnosed last July with a quarter size tumor in my left lung and a avocado size tumor on my spinal cord. I had surgery on my back the end of August to save me from being paralyzed. I’ve had 5 treatments so far and my tumor isn’t responding to treatment so my oncologists are getting a second opinion from Dana-Farber, so now I hurry up and wait for an appointment. I don’t plan on letting cancer steal my last 15-20 years as I just turned 59. My cancer is also hereditary from my mothers side.

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Hi Robin,

Welcome to the Forum.  I’m very sorry you’ve had to find us. I was 51 at the time of my diagnosis sixteen months ago. What I have since learned is that women in their 50’s are at high risk for lung cancer. Who knew?! Certainly not the PCP community as there is no real screening measure in place like there is for mammograms.  
Dana Farber is probably the best place in your neck of the woods to get a second opinion, they’ve seen a lot as a result can design unconventional treatment plans when the standard of care isn’t responding as expected.  
The biomarker is of critical importance to personalize the treatment plan.  There’s also some really interesting clinical trials at Mass General too.   
Hold onto hope as best you can. Let us know how we can support you.  
Michelle

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Hello Robin,

Welcome to our group.  In my case my LC was confined to a single lobe and a lobectomy (done in May 2019) seems to have taken care of it for now.  I see your case is different and will need a different approach.  There are people here (you already met Michelle) who have had varied and different  treatments for their cancer and you will get a great deal of knowledge from their experiences.  For my part I'll answer any questions I can and will be happy to offer support when needed.  The "hurry up and wait" part of this disease can be maddening, but is so necessary to get to a good treatment plan.  Stay calm, ask anything you want and know that you're not alone.

Lou

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Hi, Robin. I'm so glad you found this forum. We have so many great contributors here. You will learn very quickly that everything is hurry up and wait. I also had to adapt quickly to the loss of control of my schedule! Great news is we've had lots of advances in treatments. We've got people living with this as a chronic disease. Doesn't sound fun but it sure beats the alternative. I'm a stage IV about to hit my 4 year cancerversary. It can be done.

Please let us know how we can support you.

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Thank you all for your support. We’re waiting for Tempus the company that breaks down the tumor and finds the DNA and genetic makeup and also mine. My Drs said 2 weeks. I appreciate my Drs not just trying this and trying that. They’ve already spoken with the Dr at Dana-Farber but we need the DNA to give to Dana-Farber. Another thing I’m grateful for is my cancer is slow growing and my Drs won’t put me in harms way. Thank God my GP pushed me to get the early detection CT lung scan because of family history and my habit of smoking (207 days quit) otherwise I wouldn’t have known I had it until it was too late. I’m sad to be here but it helps to be able to talk with other warriors so I don’t feel so alone. Thank you again!

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On 1/30/2020 at 9:30 PM, Susan Cornett said:

Hi, Robin. I'm so glad you found this forum. We have so many great contributors here. You will learn very quickly that everything is hurry up and wait. I also had to adapt quickly to the loss of control of my schedule! Great news is we've had lots of advances in treatments. We've got people living with this as a chronic disease. Doesn't sound fun but it sure beats the alternative. I'm a stage IV about to hit my 4 year cancerversary. It can be done.

Please let us know how we can support you.

I just signed on and really needed to hear you are at 4 years with stage IV.  So happy you are doing so well. I was diagnosed in July. 4 rounds chemo now on keytruda only. Also had cyberknife for brain mets. Looking for hope. Have mri and cts in next week. 😓

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On 1/28/2020 at 1:42 PM, mam12198 said:

Hi, I’m Robin from Connecticut. I was diagnosed last July with a quarter size tumor in my left lung and a avocado size tumor on my spinal cord. I had surgery on my back the end of August to save me from being paralyzed. I’ve had 5 treatments so far and my tumor isn’t responding to treatment so my oncologists are getting a second opinion from Dana-Farber, so now I hurry up and wait for an appointment. I don’t plan on letting cancer steal my last 15-20 years as I just turned 59. My cancer is also hereditary from my mothers side.

Hi Robin. I'm new here. We have some things in common unfortunately. I was also diagnosed in july stage IV.  I am going to be 57 in a couple months. I'm anxious to hear how Dana Farber helps you. Please keep me posted. I will be seeing in the next week how scans are. 

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On 1/28/2020 at 3:01 PM, LUNGevityKristin said:

Welcome, Robin.  This group is full of wonderful, supportive people.  Did you have biomarker testing done?  Please keep us updated on your appointment.

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I’m so sorry you are here Lisa loves Marty.

 I’m trying to stay hopeful as I wait for my results from Tempus as this is the second week. Of course every ache I feel I think it’s the tumor growing so I have to keep reminding myself my Drs wouldn’t put me in harms way and I have a slow growing cancer. I’ll feel better once we have a plan.

what are your treatments?

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12 hours ago, mam12198 said:

I’m so sorry you are here Lisa loves Marty.

 I’m trying to stay hopeful as I wait for my results from Tempus as this is the second week. Of course every ache I feel I think it’s the tumor growing so I have to keep reminding myself my Drs wouldn’t put me in harms way and I have a slow growing cancer. I’ll feel better once we have a plan.

what are your treatments?

Right now I'm on keytruda every 3 weeks. I had 4 rounds of chemo first along with keytruda. I also had cyberknife for brain mets. I have mri and cts in the next week. Scared of course. Finding hope here tho. Just joined a couple days ago. What is tempos?  Tell me about your journey?

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10 hours ago, Lisa Loves Marty said:

Right now I'm on keytruda every 3 weeks. I had 4 rounds of chemo first along with keytruda. I also had cyberknife for brain mets. I have mri and cts in the next week. Scared of course. Finding hope here tho. Just joined a couple days ago. What is tempos?  Tell me about your journey?

Morning, I was on carboplatin/keytruda/alimta for 4 treatments, then they stopped the carbo and did a PET scan and my tumor was still active but didn't grow so they stopped treatment because it wasn't doing anything for me. This is why they asked for a second opinion and we decided that we aren't waiting for insurance/Dana-Farber and will go to Yale which has Smilow Cancer Institute which is very good. I have a slow growing cancer but I don't want to waste time on insurance companies or hospitals making you get a preauth before they'll make an appt. So Tempus is a company that breaks down your blood to come up with your dna/molecular structure so they have a better idea of what treatment will work on your tumor. Yale will also breakdown my tumor (frozen biopsy) and do the same. Then my treatment can be either an infusion that works or a pill for targeted therapy. I just want something in me.

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I'm mad that I have to have a stupid tumor that can't respond to the conventional treatment that I was on. I have to sit back and remember that I should be thankful to my GP for pushing me to go for the early detection CT lung scan because of family history and I did smoke for 30 years because otherwise I wouldn't have known it was there. So in other words I need to be thankful. I'm trying but some days are harder than others and I know you all can relate to that. I am praying they come up with something that blasts this turd!! I'll keep you posted and you keep me posted on you!!!

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On 1/28/2020 at 10:42 AM, mam12198 said:

I don’t plan on letting cancer steal my last 15-20 years as I just turned 59

Hi mam12198,

I believe you are right... We can all relate to some days being harder than others - as well as being mad in our response to cancer.  I loved what you said above, as well, as it shows your fighting spirit!

I also remind myself to be thankful to my GP / PCP for pushing me to get an early detection Lung CT scan as I would not have known what was lurking inside of me.  I had a previous PCP that I saw for years who never mentioned a lung CT once - knowing I was (then) a 30+ year smoker. I also have a family history of cancers, including breast and ovarian. That same PCP said it's "not necessary" to obtain any genetic cancer testing. Fortunately, I moved to a new area where the PCP insisted I get a lung CT, even though I had no symptoms and a new PCP just wrote a referral for genetic testing.  My initial lung CT showed multiple nodules, one of which was of concern. That was in Dec. 2016. I was 58 y.o. and terrified. I had to watch and wait. Due to the location and small size of the nodule in question, a biopsy could not be performed to confirm if the tumor was indeed cancer. A PET scan showed an uptake of 3.7. I chose to follow my surgeon's recommendation and have the upper right lung lobe removed via VATS surgery. That was in October 2018, so it was a long, almost two year wait from the time I had my first CT to the first step / action towards treatment. Not a day passed that I wasn't aware of something inside of me that might be cancer. The tumor ended up being NSCLC. I required no further treatment, so I should be grateful, and I am.

But learning to live with this - and the new way of life (repeat cat scans, changes in breathing since surgery, anxiety, trying to "live in the moment", etc.) has been a challenge. We are now "watching", once again, another questionable nodule that appears to be a slow-growing ground glass semi-solid nodule on the upper left lobe. I have another CT scan in early April. I am trying to learn to be patient with the waiting. I want to be in control of this and to get it out of my body if it is another cancer... right now. But, as my surgeon said, if it is cancer, it is still too small for him to even find it if they were to operate. So, I try to divert myself by keeping busy, but the closer it gets to the next upcoming CT scan, the more anxious, crabby, distracted and unproductive I feel I become...

I'm sorry you are here, but glad you found us / this site. You will find a wealth of support and information from others here. I am not a great contributor - and definitely not as knowledgeable as others here - but I come here to be inspired and to not feel as alone as I often do in this experience.  The positive outlooks and energy here from others in this battle is amazing.

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Morning ColleenRae, your story sounds almost exactly to mine except for the waiting for the CT scan. I have to get over being mad at myself for smoking 30 years and remind myself that back in the 70's it was the cool thing to do in school and everyone did it, including my Drs and they smoked in hospitals. But I should have never started again after I quit before I got pregnant in 1997!! I quit for 2 years and then like a jerk, started again. Terrible habit but I have to let it go as the damage is done now and I quit in July of last year and hopefully that will help my lung/tumor.

I am jealous that you were able to have the lobe removed, my tumor is located on top of my heart, left lobe. It's too close to my heart to remove. I don't know if they can even do radiation on it because of the location. So we wait for all of the dna/molecular testing to be done on my blood and tumor and consult with Smilow Cancer in Yale New Haven Hospital and see what they think and then back to the drawing board. I am praying they come up with a treatment to blast this turd away. Good thing I still feel fine, just a little tired. There are many days that I still think that I can't believe I have cancer and I get very angry especially when I know many people my age that smoke weed, cigs and so worse but they're fine. I have to stop asking myself why me and just keep moving forward with the fight. it's here, I can't change the past and I have to accept it.

It's great chatting with you as today is one of those blue days for me but I'll get through it. Take care!!!!

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19 hours ago, ColleenRae said:

 

Hi mam12198,

I believe you are right... We can all relate to some days being harder than others - as well as being mad in our response to cancer.  I loved what you said above, as well, as it shows your fighting spirit!

I also remind myself to be thankful to my GP / PCP for pushing me to get an early detection Lung CT scan as I would not have known what was lurking inside of me.  I had a previous PCP that I saw for years who never mentioned a lung CT once - knowing I was (then) a 30+ year smoker. I also have a family history of cancers, including breast and ovarian. That same PCP said it's "not necessary" to obtain any genetic cancer testing. Fortunately, I moved to a new area where the PCP insisted I get a lung CT, even though I had no symptoms and a new PCP just wrote a referral for genetic testing.  My initial lung CT showed multiple nodules, one of which was of concern. That was in Dec. 2016. I was 58 y.o. and terrified. I had to watch and wait. Due to the location and small size of the nodule in question, a biopsy could not be performed to confirm if the tumor was indeed cancer. A PET scan showed an uptake of 3.7. I chose to follow my surgeon's recommendation and have the upper right lung lobe removed via VATS surgery. That was in October 2018, so it was a long, almost two year wait from the time I had my first CT to the first step / action towards treatment. Not a day passed that I wasn't aware of something inside of me that might be cancer. The tumor ended up being NSCLC. I required no further treatment, so I should be grateful, and I am.

But learning to live with this - and the new way of life (repeat cat scans, changes in breathing since surgery, anxiety, trying to "live in the moment", etc.) has been a challenge. We are now "watching", once again, another questionable nodule that appears to be a slow-growing ground glass semi-solid nodule on the upper left lobe. I have another CT scan in early April. I am trying to learn to be patient with the waiting. I want to be in control of this and to get it out of my body if it is another cancer... right now. But, as my surgeon said, if it is cancer, it is still too small for him to even find it if they were to operate. So, I try to divert myself by keeping busy, but the closer it gets to the next upcoming CT scan, the more anxious, crabby, distracted and unproductive I feel I become...

I'm sorry you are here, but glad you found us / this site. You will find a wealth of support and information from others here. I am not a great contributor - and definitely not as knowledgeable as others here - but I come here to be inspired and to not feel as alone as I often do in this experience.  The positive outlooks and energy here from others in this battle is amazing.

Colleen, I'm sorry about you having anxiety over scans. I have a terrible time of it too. Crabby to my wonderful husband. Then I feel so bad. Ugh....its just too much sometimes. Hang in there. Hugs!

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On 1/29/2020 at 6:09 PM, LouT said:

Hello Robin,

Welcome to our group.  In my case my LC was confined to a single lobe and a lobectomy (done in May 2019) seems to have taken care of it for now.  I see your case is different and will need a different approach.  There are people here (you already met Michelle) who have had varied and different  treatments for their cancer and you will get a great deal of knowledge from their experiences.  For my part I'll answer any questions I can and will be happy to offer support when needed.  The "hurry up and wait" part of this disease can be maddening, but is so necessary to get to a good treatment plan.  Stay calm, ask anything you want and know that you're not alone.

Lou

Hi Lou:  I just had a lobectomy on December 16th.  How are you doing since you had yours in May?  I'm wondering what to expect in the next few months.  I'm still a bit sore and still have some swelling.

Terry

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Well, it's been 9 months and I'm back to a full workout schedule where I do 5 miles on the treadmill and 30 minutes with weights per day, 6 days a week.  And I don't find myself breathless.  My healing has come along well although I still have a bit of "tightness and numbness" on the side where two of my incisions are, but it is a mild discomfort and I do see normal feeling slowly returning in that area.  My advise is to rest often, move as much as you comfortably can (walking, etc.), use your spirometer often (it keeps your lungs clear and speeds healing), drink a good amount of water and increase your activity a little be each day.  In no time (4-5 weeks in my case) you'll be getting back to a normal activity level and will likely feel much better than you expected.  The swelling and soreness will diminish and fade over time so please be patient...always let us know if you have any specific questions as we are all happy to share our experience and you're going to be okay.

Lou

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Hello friends, well Smilow/Yale finally got back to us about some clinical trials yesterday. My Drs and I will discuss them and decide if we will do one or for now, do some chemo since I haven't had any treatment since 1/10 and that I don't like. I should be getting something done next week. The chemo treatment will be docetaxel and Ramucirumab (Cyramza). Every 3 weeks I believe. Even Yale's Cancer Dr said that I can do standard chemo for a while and then see if any different trials come up that interest me. I think I'm going to get some chemo in me instead of sitting here with nothing. My Dr called me yesterday and already set it up as they were tired of waiting for Yale to get back to us, so they are thinking the same way I am. Maybe this cocktail will affect the tumor, won't know without trying. Thank you for your support!!!!

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My Dr just called and said my tumor has a mutation in it, same mutation in breast cancer. Makes sense the Docetaxel. 
I’m set for chemo this coming Tuesday.

thank you and I’ll keep you posted!!!

you all are wonderful!!!

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What mutation?  I have HER 2 amplification. Also common in breast cancer, not lung. Immunotherapy did not work for me.  Just finished 4 rounds of Alimta and carboplatin. Scans next week. If still stable I go to maintenance with just Alimta. I only know one other lung cancer warrior with this same mutation. It’s pretty rare. Would be good to know if I have another mutation buddy!

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