Deb W

JuneK,
Welcome.
Judy's advice is just what you need now--to acquire knowledge about this disease. Her suggestion of attending our upcoming survivorship conference is a good one. It is a virtual conference using Zoom technology and it will be a crash course in understanding all things "lung cancer". Here is the link that allows you to register for this free event.
My diagnosis, like yours, was a surprise. Mine occurred at age 53 and I did exactly what you did--took a deep dive into "Dr. Google" to ascertain survival possibilities. The virtual doctor suggested about 6 months, and I've beaten that by a large margin. In February, I will have survived nineteen years after diagnosis of late stage lung cancer, progressed to Stage IV. So my first suggestion is, if I can live, so can you!
How does one do that? I believe knowledge is power in this disease so learn everything you can about it in general and most importantly, when you get your biopsy information back, take a deep dive into your particular type and presentation. How does one do that? The survivorship conference is a grand introduction but here (our Lung Cancer 101) is a very good tool you can use today.
Besides knowledge, survival attitude, I believe, is important. I don't know why. There is not any science to back up my attitude suggestion. But there are human dynamics that support it. If you present yourself as a knowledgable patient, believing the treatments you receive are going to help, and asking relevant questions of your treatment team, they will stretch to do there best for you. Here is a blog I wrote years ago that cites Stephen Jay Gould, PhD, who was diagnosed with a very lethal form of lung cancer but went on to survive 10 years beyond his diagnosis. In the blog, there is a link to the essay Gould wrote about his survival journey that speaks to attitude and listening to that essay now, for you, will be most helpful.
So we have knowledge and attitude and last but perhaps the most important thing for you to embrace now is hope. And, indeed "hope is a good thing." Here is my message to you about hope.
We are here for you every step of the way. We can answer questions and offer feedback. Recognize that lung cancer treatment is no longer a medieval experience. New and sophisticated methods that actually produce results are in play for those in treatment today. There is much to be hopeful about.
Stay the course.
Tom
 

Hi Kevin
 Your  wife’s Case sounds very familiar to mine. I ended up going to the ER back in March 2015 with a very sudden and severe onset of what I thought was vertigo.  An urgent CT scan was done and the ER doc came in and told me I had a brain tumor, my first thought was that I had glioblastoma because I had lost a cousin to it just one year prior. 
 
I was transferred to a larger sister hospital and spent the first week in a neurology unit having multiple test done and ultimately learned that I two had stage four non-small cell lung cancer which later turned out to be KRAS positive.  
 
My first treatment was stereotactic radiation which was very effective and cleared the brain mat which to this day -,thankfully has never returned. I later started on chemotherapy (Carboplatin and Pemetrexed) which was pretty much all we had at the time and did quite well for a few months, but when I was switched to Pemetrexed  to maintenance.  
 
By the fall I had a very aggressive tumor and we knew I needed another treatment - that is when my oncologist suggested I go on immunotherapy “Opdivo” Which had just recently been FDA approved as a second line treatment without any need for high PDL1 - Back when I was diagnosed they didn’t test for PDL1 so I never knew at the time what mine was so this made the most sense.
I also had 10 rounds of radiation to my chest chest before I started the Opdivo.
 
My first scan was in February and we saw a lot of shrinkage and we were very pleased with how well it was working. I continued but ultimately start having side effects and the most concerning was low-grade pneumonitis, this is something that can be a common side effect and also become serious. In my case it didn’t get to that point but by August I had my third bout with it even though it was totally asymptomatic it would show up every time I had a CT scan and there was a lot of inflammation in both lungs.  By this time I was stable so they decided to stop the immunotherapy even though the standard treatment. Is two years. I was on it for nine months and it was a lifesaver for me. It’s now been almost 6 years since that last infusion and I am now NED And have not had any treatment since August 2016. I still see my oncologist on a regular basis, I have port flashes every six weeks, labs every 12 weeks and Scans currently now every six months.
Until you have the biomarker results you will not know if this may be an option, but if it is I would highly recommend it. Most patients now start with a triplet which is a combination of two chemo meds usually Carboplatin And Pemeytexedvalong with Keytruda which is another immunotherapy drug very much like Opdivo.
I definitely started out with a very poor and grim prognosis, but so much has changed in those last seven years and I am very thankful to be doing well and hope and expect to be a long-term survivor for many many more years. There is some new studies that seem to indicate when people have this type of response to immunotherapy it actually may in the very near future be considered potentially curative. I hope every day that will be the case!  
 
Welcome to LUNGevity an amazing support system for all those touched by Lung cancer.
 
in addition to the form we also have several Facebook groups and I tend to be in those groups more often. There is one specific to support and awareness which is the main group and then there are also groups specific to mutations if and when you find out which mutation she has she may find one of those groups to be very helpful. On top of that we have what is called virtual meet ups with your hosted weekly on zoom and you can sign up for those on the main LUNGevity page.  Fantastic group of survivors and caregivers who come together to chat and  fellow survivors and family members.
Wishing you both a very best. Welcome to the group that no one wants to join!
Lisa
 
 
 
 
 
 

As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb

As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb

As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb

As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb

Jack,
May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
Deb

Jack,
May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
Deb

Jack,
May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
Deb

Lizzy
 I wanted to wish you the very best and try to offer some inspiration!.
I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain.  I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan.
Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy.   I am now Stable/NED and doing well.  I have been off ALL treatments for over 5 years and continue to remain stable.
I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects.  It too, worked well.    I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it.  ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions.  I still have mine and love using is for labs and contrast for my scans.  I go in every 6 weeks for flushes!   
I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you.  I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me.
Take care and be well.  I wish you the VERY best!
    ~ Lisa
PS:  When I was diagnosed I did not have any grandchildren - something I had always dreamed of.  Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life.  They are pure JOY and LOVE!   

Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
Warmly,
Deb

Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
Warmly,
Deb

Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
Warmly,
Deb

Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
Warmly,
Deb

Cancer patients get a unique appreciation and understanding of the medical profession by the very nature of our disease. At the minimum, we interact with our GP, Oncologist or Radiologist, and a brace of medical testing and treatment nurses and technicians. This experience base gives us a lot of insight into the profession. Here is a synthesis of the insight I've accumulated over the years.
Never go to a diagnostic "results revealed" medical consultation alone.
If you don't understand the words the doctor uses, ask them to re-explain without the "medical/techno-speak."
Tell the doctor your special circumstances or medical needs before hospitalization or infusion treatment. Ask these be captured in the admitting orders. Ask to see the admitting orders at admission or before first procedures. Don't get admitted if the order does not cover your special circumstance.
Most procedures can be painless or discomfort can be minimized but you need to ask for relief before the procedure. For example, ask for a lidocaine injection before IV insertion or for Xanax to reduce anxiety during scans. These are examples of special circumstances that should be discussed with the ordering doctor at the time he orders the procedure. Don't be afraid to complain. Be kind at first but if the situation is not resolved to your satisfaction, add anger. Remember, you are paying for all this and you are a customer as well as a patient.
People in the medical profession are like people in any profession. Some are good and some are not so good. The difference is medical professionals have unique authority and special powers that say a consulting engineer or a lawyer will not have. To get prospective on a new medical professional, pay attention to how he or she interacts with the office or clinical staff. They won't treat you any better than the people they work with every day.
The best doctors treat people, not patients. Try and find ways to remind them you are a person. Tell them you are afraid or uncertain, for example, to help them recall they are dealing with a human being. I always find a way to ask if they pray before a procedure.
Most medical professionals, unless also cancer survivors, won't have any idea how or what you are feeling. Tell them before, during and after a procedure.
 
 
 
 
 
 
 
 
 
 
 

Hi Chuck,
Greetings fellow ALK brother!  My CPK levels took a while to even out as well.  I do have long term muscle aches and random joint pain.  As for the water, be cautious not to drink too much as it will decrease your sodium levels and potentially potassium levels which causes- drum roll- muscle aches!  It’s a balancing act the first year on Alectinib.  I drink two 33 Oz smart waters a day, some herbal tea, and at night a glass of lemon water with organic Apple cider vinegar.  
 
I also take a large prescription potassium supplement as well as a calcium supplement called Bone Maximizer.  Those two things recommended by my Integrative Physician helped.  
 
Most of us have at least one dose reduction, since these meds are prescribed at maximum levels sometimes they need adjustments without losing efficacy.  
 
I do light weights, lots of walking and more recently enrolled in the LiveStrong program at the YMCA.  Alectinib is brutal on fatigue so exercise is very important.  Until you get medical clearance to start again check out the Tai Chi videos on YouTube.  
 
Good luck on the scans!  I just had mine, NED 40 months on therapy.  
 
Michelle

Justin, I found this explanation very enlightening: https://www.oncolink.org/frequently-asked-questions/cancer-treatments/how-long-after-radiation-can-tumor-keep-shrinking

Hi Justin,
I was diagnosed with lung cancer at the age of 51, three years ago.  I’m grateful for all the research as I’ve been in remission for almost two years now.  There is life with lung cancer, it’s a roller coaster in the beginning for all of us.  
One of the books I read early on was written by long term lung cancer survivor, Greg Anderson: Cancer- 50 Things to do.   For me it was a good road map on how to sort through the chaos and find a way forward.  
Anyone with lungs can get lung cancer… as Lou said, no one is alone here.  Step by step we will help you find the brighter days ahead. 
Michelle

Hi again and THANKS again to everyone. Update.. the chemo and the targeted lung mass radiation is temporarily 'on hold'. Got word yesterday that Friday's brain MRI showed two active masses, (left frontal lobe 2.2cm with edema and left temporal lobe 3.1cm with edema and hemmoraghing), so now neuro surgery is jumping in to deal with the brain issues first, and then I'll be back to the first plan (no biggie to wait for a week or two,biomarkers aren't in yet) First meeting/consultation with Neurosurgeon is TOMORROW.  Feeling so looked after by all right now 

Hi Lizzie,
Freight train is a good way to put it and at the same type it’s so important to have a complete diagnostic picture before the treatment plan gets rolling.  
 
My oncologist moved very quickly too because my condition was deteriorating rapidly. The triplet was first followed by the port.   That was three years ago and now, it can be done a little differently.  There’s a couple of questions I would recommend asking since the biomarker testing isn’t back yet (?). 
 
Ask about the reason for including Keytruda in the chemo combo.   If you have a biomarker, your targeted therapy could be delayed to allow for the immunotherapy to wash out of your body.   Keytruda and targeted therapy often don’t mix.   Some people are getting the Carbo and Pemedtrexed alone for the first infusion. 
 
Also if you do have a biomarker, then a port may not be necessary either.  
Here’s a short version of what happened to me which admittedly is uncommon: 
I got the B12 shot and one week later the triplet.  The following day after my first infusion I received the port.   The port install was a Friday morning.  Unfortunately I had a complication.   It was messy.  
After the triplet my symptoms worsened. The cough increased, then I broke a rib.  
Just before the second scheduled infusion, my biomarker came back as ALK Positive.  Had we known that sooner we would have held the Keytruda as it’s not effective with ALK and all it did was worsen my symptoms.   Fortunately it had been three weeks since the infusion so it was safe to start targeted therapy.  
Then the port came out, it was never able to be used.  It took a little over a month to heal.   Again, this is atypical but if we had to do it over I would have skipped the Keytruda and the port until the biomarker testing was confirmed.   
So the two questions I would ask your oncologist is:
In the absence of the biomarker results:
1. What is the purpose of Keytruda?
2. Is the port necessary before the first infusion or can it wait until the biomarker comes back?  

The other issue to consider is if your doctor is not at a National Cancer Institute (ie Johns Hopkins in your neck of the woods) then you may also want to consider a second opinion.  Lung cancer has become highly specialized having an expert opinion is very important.  I was diagnosed at a very reputable hospital system in the KC Metro.  The proposed treatment plan was the triplet, but we got a second opinion with additional biomarker testing (called NGS- next generation sequencing).  The NGS identified the ALK mutation where the “standard biomarker” testing did not.  
 
These early days are dizzying, knowing what questions to ask and the process helps to get a little settled.  
 
Good luck next week and let us know how you’re doing. 
 
Michelle

Hello Again Everyone, 
What a busy day! Had a very informative and supportive meeting this morning with my Oncologist, my freight train continues to roll...
Diagnosis Stage IVb (T3 N2 M1c) 
Next up, 
Tues 11/23 biospy adrenal gland,
Weds 11/24 - port being put in chest (Thursday 11/25 day off for turkey day)
Fri 11/26 - Brain MRI
Current chemo infusion plan to start w/c 11/29 is Carbo (AUC 5) +Pemetrexed (500mg/m2)+Pembro (200mg) unless Brain MRI shows positive, then drug plan will change.
Also starting palliative care w/c 11/29
Feeling much more empowered tonight. Knowledge IS king. I truly appreciate my Doctor's openness today with everything. Kind and caring, and NO sugar coating. 
Again, thanks everyone, your support has been truly invaluable to me this week. Take care all.
Will update again after brain MRI result known.

Hello there, my name is Lizzy, 56, wife, mother and grandmother. Like everyone, I never expected to be looking at joining the club. 8 weeks ago my left shoulder blade started hurting, (akin to a pulled muscle feeling), 3 weeks ago went to my doctor as it was getting more painful. Since then xray, CT scan, PET scan and biopsy. PET scan lit up left lung mass, right aredenal gland, lymph nodes in chest, lymph node in neck, and soft tissue surrounding pancreas, liver, and upper abdomen. Got biospy result Friday night on the largest mass (5.5cmx5.4cmx4.1cm) - the lung. Adenocarcinoma.
No other symptoms except for shoulder blade pain. Hoping for call from Oncology tomorrow for an initial appointment date to discuss what it all means and what the options are. I think I'm still in a twilight zone of knowing more than I want to already, and yet it has felt like the longest two days waiting for Monday.  
Thanks for listening.
Lizzy

Thank you all for your support I think I'm afraid to hope for anything good because if i do I will get knocked down again, but I will let you know any news as soon as possible many thanks Justin 

Tom - This is so helpful.  Thank you so much!  Now I see why I've been so confused by the terms!

Tom - This is so helpful.  Thank you so much!  Now I see why I've been so confused by the terms!