Just starting this journey...

[linda018]

I am very grateful to have found this site.  I've spent a lot of time reading through the topics, trying to soak in information as much as I possibly can.

I was just diagnosed with NSCLC.  All of the tests aren't back yet from the biopsy so the stage hasn't been set nor treatment plan although my oncologist says it will more than likely be Chemo, Immunotherapy and Radiation.  Three weeks ago, if you would have told me this was growing in me, I wouldn't have believed it.  I was concerned about a possibility of COPD.  I'd had bronchitis three times this season, given antibiotics each time and it cleared up, but never totally.   I had a horrible cough, oftentimes pretty violent.  About the end of March my back started hurting in spots.   Other than that, there was nothing.  Without going into lots of details of a number of ER visits for the increasing back pain, xrays were done and they told me there was a mass in my right lung.  That led to a CT scan.  Although sent home that day,  less than a week later I was back in the ER with the pain that just plain wasn't being controlled with whatever I took.  By that time I had appointments set up for the following week with a pulmonologist and oncologist.  The attending doctor though at the ER suggested he admit me and all could be fast tracked.  I could get the biopsy before even my first appointment.  I agreed.  Some of my pain was coming from the fact that I also had a broken rib that was displaced that they saw on the xray.  I knew there was something like that, but up until then, it seemed no one really believed it.

While in hospital I had a CT guided biopsy, that was easy.  The problem I had was getting control of the pain.  Nothing really worked except for IV Morphine and then Dilaudid.  But they wouldn't release me until I was on all oral and it was controlled.  An up dosage of Norco seemed to do it.  However, since I've been home, it has been pretty awful.  It just doesn't keep it at bay.  They have me on 15mg of oral morphine, extended release and Norco for the breakthrough pain.  They finally upped the nighttime dosage to two as it was still not controlling it.  That hasn't made much difference.  I've got to get control over this or what's coming next will, I imagine, be even worse.

No surgery at this point anyway.  Too big and not in a great place. Has spread the the lymph nodes there locally, so could be elsewhere, the PET scan should show that. I'm scared but ready to fight and walk through what is needed to do all that can be done to get rid of this. My oncologist is very candid and right up front said there isn't a cure, but there are so many options now and more coming all the time, that will allow treatment to make a major difference.  He

 I have a PET scan tomorrow morning and see the radiologist on Wednesday.  They tell me the radiation will also help with the pain as it begins to shrink the tumor. I just want to start something. With action, I will feel as though we're moving forward.  Until then, it intensifies the anxiety.  I'm trying to continue life, doing things that distract, and try not to let this take over every aspect of life.  If I could just get this pain under control, I think that would be more than possible.

I look forward to getting involved here, sharing my story and in time, helping others from my experiences.

[Rower Michelle]

Hello Linda,

Welcome. You’ve been through so much these last few weeks; we understand what you are going through as we’ve all been there.  Your circumstances are very similar to mine. The cracked rib from the coughing spasms was terrible.  I did get acupuncture for with very good results.  The coughing spasms will settle down as your treatment plan is implemented.  Try not to talk too much and hold a small pillow into your rib cage when you have a coughing fit. 

The anxiety and emotions are very intense, difficult to describe to anyone else.  Don’t stuff those emotions.  My husband and I balled our eyes out for weeks.  As the treatment plan swung into gear, I started to feel better pretty quickly.  The better I felt, the anxiety decreased. There are brighter days ahead.  Some days it’s one hour at a time.  The good days will begin to outnumber the bad ones.  I was diagnosed last September today my disease is stable thanks to the medical miracle of targeted therapy.  I’m out living life at 110% every day.  Give yourself time to adjust to your new normal.  It takes some time AND you will get there.  Lung cancer is managed like a chronic condition today.  There is hope.  

We’re friends here. We cry, laugh, hug and celebrate each step of this journey.  Let us know what questions you have and how we can best support you-even if you just want to chat about anything or nothing in particular. 

Its nice to meet you! 

Michelle

[BridgetO]

Hi linda and welcome. I'm glad  you found ua and so sorry you're having so much pain. A couple of suggestions on pain. First, i wonder if some antianxiety medication would help? Pain causes anxiety and anxiety can make pain worse and make it harder to get a handle on it. Second, consider asking for an immediate referral to a palliative care specialist. Some people think palliative care is the same as hospice. It's not, though hospice services often include palliative care elements. Palliative care is useful for anyone who is having pain (or other diaabling or unpleasant effects) from illness or from side effects of treatment. It's aim is to improve quality of life and also help coordinate complex treatment.With your pain, you would certainl qualify. With your treament, you're lilely to have some side effects that could be helped, too. 

I hope you'll be more comfortable soon. Hang in there! 

Bridget O

[Steff]

Hi Linda,

Welcome from me too!  I too am happy you have found us.  This site is very helpful in navigating the diagnosis and treatment process.  From what I have gathered from folks who are in severe pain from their cancer mass/tumor/etc is that radiation helps reduce the pain very quickly (usually within a few visits).  But to get you to that point and to help with comfort, palliative care may be a good option for your, as Bridget mentioned.  

As with all complex systems and stressful times, there will be lots of questions and emotions.  We are here for you.  Please feel free to reach out to us as you navigate your way through this cancer diagnosis and survival.

Take care,

Steff

[Susanrae]

Take care Linda as you navigate through this.  I am also very new to this journey.  The resources within this site are invaluable for coping with this disease.  We are here for you.  

 

 

 

 

 

 

 

 

 

[LouT]

Hello Linda,

Welcome to our community.  I'm sorry to hear your plight, but glad that you found us.  I see that you've already received some great counsel and experience from other members and that is the beauty of this forum.  There is a wide variety of experience and knowledge here that can be helpful to anyone with LC and always a great place for support as you go through so many difficult phases.

Please keep us updated and ask as many questions as you need to.

Lou

[linda018]

On 5/12/2019 at 11:02 AM, Rower Michelle said:

Hello Linda,

Welcome. You’ve been through so much these last few weeks; we understand what you are going through as we’ve all been there.  Your circumstances are very similar to mine. The cracked rib from the coughing spasms was terrible.  I did get acupuncture for with very good results.  The coughing spasms will settle down as your treatment plan is implemented.  Try not to talk too much and hold a small pillow into your rib cage when you have a coughing fit. 

The anxiety and emotions are very intense, difficult to describe to anyone else.  Don’t stuff those emotions.  My husband and I balled our eyes out for weeks.  As the treatment plan swung into gear, I started to feel better pretty quickly.  The better I felt, the anxiety decreased. There are brighter days ahead.  Some days it’s one hour at a time.  The good days will begin to outnumber the bad ones.  I was diagnosed last September today my disease is stable thanks to the medical miracle of targeted therapy.  I’m out living life at 110% every day.  Give yourself time to adjust to your new normal.  It takes some time AND you will get there.  Lung cancer is managed like a chronic condition today.  There is hope.  

We’re friends here. We cry, laugh, hug and celebrate each step of this journey.  Let us know what questions you have and how we can best support you-even if you just want to chat about anything or nothing in particular. 

Its nice to meet you! 

Michelle

Thank you Michelle for your words.  I'm looking forward to those days once treatment has started that will be less painful than now, even realizing treatment brings its own set of things to contend with.  I'm staying relatively calm, but only wish the right combo could be found for the pain.  It's doubly frustrating dealing with the insurance companies.  They will try one med and get the authorization for it, and we find as I take them, it needs adjusting, usually by more, and they call in either something else or the same but "too early to refill" and then the authorization thing goes back into affect.  Finally backed into a wall two days ago.  They have me on an extended release morphine 15mg and then Norco 7.5mg for breakthrough pain.  Unfortunately the breakthough pain happens in about 4 hours and I've gone thru the Norco pretty quickly.  They now what to forego Norco and try a quick release Morphine 15mg and the insurance won't authorize it.  They tried calling in a ten pill Norco prescription and the insurance said no, too soon to refill.  The suggestion given to me was to tell the pharmacy you'd pay out right for them and they'll fill it.  Now, you wouldn't think they would if across the board all are worried about narcotic abuse and addition, but they didn't hesitate.

I have a radiologist appointment tomorrow morning.  Had a PET scan yesterday.  I hope that we can start the radiation very quickly as I believe it will greatly help. Then once all the rest of the results are back from the biopsy, we'll have a treatment plan in place.

Thank you again,

Linda

 

[linda018]

On 5/12/2019 at 11:58 PM, BridgetO said:

Hi linda and welcome. I'm glad  you found ua and so sorry you're having so much pain. A couple of suggestions on pain. First, i wonder if some antianxiety medication would help? Pain causes anxiety and anxiety can make pain worse and make it harder to get a handle on it. Second, consider asking for an immediate referral to a palliative care specialist. Some people think palliative care is the same as hospice. It's not, though hospice services often include palliative care elements. Palliative care is useful for anyone who is having pain (or other diaabling or unpleasant effects) from illness or from side effects of treatment. It's aim is to improve quality of life and also help coordinate complex treatment.With your pain, you would certainl qualify. With your treament, you're lilely to have some side effects that could be helped, too. 

I hope you'll be more comfortable soon. Hang in there! 

Bridget O

Hi Bridget.  Thank you for writing.  I have been on anti-anxiety meds for a few weeks.  It was one of the first things suggested.  Haven't been sure it's been helping but I don't feel to anxiety ridden, but then again at times, I'm not sure how I'm feeling - lol!  They have talked about palliative care.  I've read a little about it and will do some more.  Thank you for suggesting that.

Hanging in there the best I can.  I know attitude is a huge, huge factor.  I tend to be naturally positive, so I'm drawing on all of that for this!

Linda

[linda018]

On 5/13/2019 at 9:50 AM, Steff said:

Hi Linda,

Welcome from me too!  I too am happy you have found us.  This site is very helpful in navigating the diagnosis and treatment process.  From what I have gathered from folks who are in severe pain from their cancer mass/tumor/etc is that radiation helps reduce the pain very quickly (usually within a few visits).  But to get you to that point and to help with comfort, palliative care may be a good option for your, as Bridget mentioned.  

As with all complex systems and stressful times, there will be lots of questions and emotions.  We are here for you.  Please feel free to reach out to us as you navigate your way through this cancer diagnosis and survival.

Take care,

Steff

Hi Steff and thank  you for responding.  I've heard from everyone that radiation makes a huge difference and very quickly.  I'm more than ready to start that.  I have a radiologist appointment tomorrow, so I hope something can be scheduled very soon.  I'd be more than happy to extend the appointment right then and there and start.  Doubt that will happen though.  Did have a PET scan yesterday, so he'll have those results and hope that's all he'll need.

I'm so thankful to have found this site.  I've poured over the posts for days, it is indeed comforting.

Linda

[linda018]

On 5/13/2019 at 10:57 AM, Susanrae said:

Take care Linda as you navigate through this.  I am also very new to this journey.  The resources within this site are invaluable for coping with this disease.  We are here for you.  

 

 

 

 

 

 

 

 

 

Thank you Susanrae.  It helps so much to have people respond and to just know there are many walking the same path.  I've been pouring over all the resources and experiences and it all has a calming effect.  I hope you too are finding  your way through this all and it too is bringing comfort.

Linda

[linda018]

On 5/13/2019 at 11:59 AM, LouT said:

Hello Linda,

Welcome to our community.  I'm sorry to hear your plight, but glad that you found us.  I see that you've already received some great counsel and experience from other members and that is the beauty of this forum.  There is a wide variety of experience and knowledge here that can be helpful to anyone with LC and always a great place for support as you go through so many difficult phases.

Please keep us updated and ask as many questions as you need to.

Lou

Hi Lou and thanks for writing.  I've read many of your posts from your journey and most recent surgery.  I hope you continue feeling better.  There sure is a wealth of information to be found here.  I think it's oftentimes just better to read real life experiences of those who are walking similar paths.  It's relateable.  And it helps.  Even though it's going to be a tough road, I'm ready to fight and full of hope that there are many things that can be done.  

Linda 

[Rower Michelle]

Hi Linda, 

I do hear you!  In my working career, I spent about 20 years as a Health Insurance executive.  Today it's such an embarrassment to be on the patient side of the delivery system.  I spoke to one of my colleagues recently and he indicated a number of us have left the field or retired; therefore, the kids who are running the show today literally do not know how to manage. So when you hit a wall, have your doctor file an appeal.  You can also call member services and ask to file a patient complaint. Make noise and do not take no for an answer; even it that means making multiple calls.  The customer service agents are so poorly training, you could call back and get another one with a totally different answer.  The best customer service agents work Monday through Friday from 9am- 4pm in their time zone.  These are metrics that insurance companies have to track and report so they do try to resolve these types of pharmacy issues.  I had similar issues with the opiates for my coughing spasms.  I was on an unusually high dose and had to try a couple of different things; none of which I'm sorry to say worked all that well.   Once my treatment started, I felt so much better.  I wasn't able to drive during this time frame;  it took me a little while to get back into the swing of things with very short drives.  

Once I was feeling better, I started a program to help manage depression and anxiety that included restorative yoga, acupuncture, and Tai Chi/ Qi Gong.   The acupuncture actually worked best for the pain management too. 

Are you able to get much sleep?  I didn't sleep through the night for months and I will never forget my first full night of sleep in October.  That will help too.  Right now you're in the day to day thick of things; it will settle down once all the testing comes back.  Keep us posted and we will be there every step of the way. 

Michelle 

[linda018]

I again appreciate the words for everyone.  It is, indeed a scary journey.

My oncologist just called me to address the pain situation.  We'll try the extended release morphine and a quick release morphine for the breakthrough and see how that does.  He does, however, want me  to be in radiation treatment as quickly as possible.  He says, without a doubt, it will help the pain.  Because the mass is large, it's certainly advanced.  The PET showed that there is involvement with the ribs in the chest and a small, small area on left shoulder blade, less than an inch.  It is in some lymph nodes near the spine, but the spine is not involved. No organs such as liver, spleen nor bowel are affected.  There looks to be a slightly enlarged area of the abdomen.  All that said, it is what he was expecting anyway.  

He said the good news is that pathology has came back with results from the biopsy and this tumor is highly sensitive to immunotherapy.  There are great results for lung tumors like mine for these targeted drugs.  He says the treatment should work well.  

He says after I see the radiologist tomorrow, we'll make determination.  If we can't get in for the start of that for a week or so, he may opt to begin the treatment of the chemo and immunotherapy then first.  He says he has enough information now to devise a plan and that is fine by me.

I'm going to hang on the good news part and just pray and hope we can get started on all of this as near to immediately as possible.

 

[LouT]

Linda

Absolutely hold on to the good news and take the battle one step at a time. I'm also glad to hear that you will soon have more relief from the pain via the extended release morphine and the upcoming treatment. 

Will keep you in my thoughts and prayers for great outcomes on all fronts 

Lou

 

[Rower Michelle]

Linda- you’re about to turn a new corner as this is excellent news. The immunotherapy is very, very effective.  You will soon be on your way to healing.  Hang on a little while longer...

Michelle

[Curt]

Hang in there Linda.  Once you settle into a treatment path things will start to get better for you.  Squeeze the good news tightly.  

[CSmith]

Hello Linda,

I’m new to this too so can’t really offer the voice of experience, but can offer my best wishes for you to feel better soon.  My family and friends and myself are still in the “what’s going on” phase and worrying a lot about every little ache and twitch...but we are starting to realize that good treatments exist and the skies will clear.  I’ve started on one of the targeted therapies and feeling much better.

I’m literally in tears reading your story and all the support offered by this group of people...and these are tears of joy realizing how much support is available here.

All the best from Canada!

Craig

[Rower Michelle]

Hi Good Morning Craig-

Back in the day Sister Sledge knew what she was talking about- “We are Family!”  🙃

[linda018]

On 5/14/2019 at 9:08 PM, Curt said:

Hang in there Linda.  Once you settle into a treatment path things will start to get better for you.  Squeeze the good news tightly.  

Squeeze the good news tightly.  That is a wonderful visual.  Thank you Curt!

[linda018]

2 hours ago, CSmith said:

Hello Linda,

I’m new to this too so can’t really offer the voice of experience, but can offer my best wishes for you to feel better soon.  My family and friends and myself are still in the “what’s going on” phase and worrying a lot about every little ache and twitch...but we are starting to realize that good treatments exist and the skies will clear.  I’ve started on one of the targeted therapies and feeling much better.

I’m literally in tears reading your story and all the support offered by this group of people...and these are tears of joy realizing how much support is available here.

All the best from Canada!

Craig

Craig,

Thank you for the well wishes and in return I am glad to hear you say how much better you are feeling.

I understand the worrying about every little ache and twitch. It seems like I feel something different or new every day.  I don't know if it's related.  Probably lots of times, it isn't.

It truly all feels surreal.  I'm sure that will change as things settle, but for now it's so all consuming.  And I, too, am so thankful that this site exists and for the people here.  It definitely is an emotional time.

Take care,

Linda

[Isabelle49]

Linda, so sorry to read you are going through this with so much pain. Ask you doc’s about the possibility of a duramorph, fentany or other opiate pain patch. Something like this may serve you better because the pain medication is delivered at a constant level and there are no peaks and valleys as in oral medications. With a pain patch, you will still be able to take additional pain medication orally for breakthrough pain. I will keep you in my prayers and hope you are more comfortable in the very near future. Bless you. Adding, RN here with CT showing a mass in my right middle lobe centrally located. Saw one pulmonologist, fired her. Waiting on assignment to another pulmonologist so we can get disgnostics underway.

[linda018]

I've been trying to stay the course and keep spirits up.  I think I'm doing pretty well, then another challenge comes up...usually with insurance, and it feels like 3 steps back.  Expected, but still...

Pain is still not managed.  I'm getting by on the morphine.  I start the radiation today.  When I had the CT scan simulation on Monday, it was pain filled getting the mold done and just trying to get through it all.  I managed.  Today, they finish the precise measurements and hopefully then the first treatment.  I'll have 15, one daily.  They know I"m having trouble with the pain meds and also my breathing.  They will have oxygen ready if needed.  I want this to start because I know it is suppose to help.with pain along side shrinking and killing the cancer cells.

Yet, I'm scared about any radiation side effects.  I know that I can get through and handle things, I just hope that I am one who has few side effects from it. With all the other, it would be encouraging to catch a break. 

My insurance initially denied the treatment.  However the doctor requested it, the insurance review said it's not supported for the cancer in the lung. They said the type of RT supported for me is 3 dimensional, conformal RT (3D-CRT).  It changes the shape of the beams to match the cancer site and helps prevent exposing healthy tissue to the beams.   Now, it would seem to me, my doctor would have already requested the treatment to be this, so it is confusing.   

I'm extremely wary of insurance companies, so I just don't know if they just search for the least expensive, right a accepted level treatment options and maybe it isn't the best care.  I hope that's not the case.

Anyway, this evening at 6:20, I'll see what all this radiation treatment is all about !

 

[Rower Michelle]

Hi Linda-

Yes, the Insurance is a real problem in our community.  It’s a totally unnecessary stressor!  It’s not atypical for this type of denial.  Aetna just lost a big lawsuit in Oklahoma over radiation.  Your doctor will need to initiate the appeals process.  Do not sign any financial liability paperwork today at the hospital (that’s what my clinic tried). Just say no thank you!  

You can also file an appeal through the HR department.  If the employer is self insured, they may authorize an exception if they are paying the bills. This is also known as an ASO contract (Administrative Service Organization).   

Insurance companies are notorious for denying newer services that doctors recommend.  If they do issue a denial then they must provide a comparable alternative.  

Its going to be a frustrating process so the more help you can get from HR the better off you will be. 

Ask for an insurance case manager to be assigned to you from the oncologist team. This will help you from getting random answers (and not necessarily correct ones) from the main customer service line. 

Keep us posted!