Update

[TJM]

Just got back from first consult with oncologist. Seemed like a competent and straight forward guy and willing to get aggressive.

Basically confirmed that my cancer is very rare. The fact I had it removed surgically makes my case even rarer. He considers the fact it was removed is a good thing (I agree). He has treated Large cell about 8 times in his career.

Treatment will be what I expected as well. Combo of Cisplatin and Etoposide. 4 treatments. He also wants to do radiation (I do as well) but needs the Tumor board to agree. He is assuming they will so getting that all set up. Then, assuming no hiccups, do a scan after treatment and start waiting.

His description of the way it responds and spreads is very similar to small cell. Treatments will start first week of March.

Based on his demeanor and what he prescribed me today I think my worry about getting medication is a thing of the past.

No walk today but I was out and about most of the day so I'll count it. Tired enough.

Peace

Tom

[Rower Michelle]

Well check that box you’re done with the first visit & have a game plan.  Sounds like heavy artillery.  Good news the doc has experience with this rare bird.  Any mention of immunotherapy? 
You’ll  want to have your health and disability up to date for all the necessary approvals.  Surprise medical bills are not fun.  Your insurance company has a case management department, see if you can get one assigned proactively (before they analyze claims).  
So lock and load, the battle is about to begin.  Time to create a very inhospitable environment for any lingering cells.  
 

 

[TJM]

Unfortunately I do not have any disability insurance. Company I work for is small and premiums were high so I declined. Funny...had it for 90% of my working life. Ahhhhhh well.

As for insurance, since I am with Kaiser it should not be an issue. They are big in the Portland area so everything under one umbrella. One of the reason I choose them. Timing wise...perfect. Already hit my max so rest of the year covered. Very helpful and so far all the care has been good and zero issues with paperwork 

Not quite locked and loaded yet. Was when all fired up for the surgery and recovery. Going to watch movies and mope tonight but I will be in fighting shape soon enough and give it the best I got.

Peace

Tom

[Rower Michelle]

Understandable, this is round two  which really wasn’t expected before the pathology report.  It’s a whole new mindset to gear up for. Moping is healthy in the beginning.  If you’re looking for movies- my favorite for this stuff is Kill Bill Vol 1 and 2.  (I named my tumor Bill).  
 

Did the doc talk about nutrition as part of the pre-chemo regiment?  You might want to check out Dr Weill’s Anti-inflammatory diet and learn to love broccoli.  You can use this time before treatment to get your body in an anti inflammatory state which some people believe can make chemo more effective.  
 

A note about disability insurance, I totally get the small company costs- I spent a fair share of my career in start ups.  I don’t think it will come to this but tuck this away- with lung cancer we are automatically qualified for Social Security Disability (six months post diagnosis). For some reason the social workers aren’t used to dealing with those of us who were working at diagnosis.   An attorney should file the application (it’s no cost if filed five months post diagnosis).   Like I said, probably not necessarily but useful information.  
 

You may also want to find an Integrative Medicine Doctor (and you have lots of them in your neck of the woods @BridgetO  has had some experience with them).  You want to create a very hostile environment for this cancer.  Worth considering.  I call them hippie docs.   I’ve been seeing two of them and my oncologist is sort of mystified about my progress.  
 

One day at a time, putting one foot in front of the other. 
Michelle

[TJM]

Thanks Michelle. Actually I am planning on following up with SS disability. Just starting the process now. Hadn't looked into it much because the earlier prognosis was so good.

Think it was Bridget who had the same surgeon I had. Small world 

Love Kill Bill....both of them. Last night I watched Ford versus Ferrari. I thought it was excellent. Then a QT movie...Reservoir Dogs. Not his best but still good.

Peace

Tom

[JC63]

Hi TJM,

I had a bilobectomy back in September. All they offered me was chemo afterwards. Since you had your lung lobe removed, where would they do the radiation? I feel like this is a dumb question, but I thought radiation was to target existing tumors. 

Thanks,

JC

[TJM]

8 minutes ago, JC63 said:

Hi TJM,

I had a bilobectomy back in September. All they offered me was chemo afterwards. Since you had your lung lobe removed, where would they do the radiation? I feel like this is a dumb question, but I thought radiation was to target existing tumors. 

Thanks,

JC

Not a dumb question at all. In fact I have that exact question in to the oncologist now. I believe it will be targeted at the lymph nodes.  I'll let you know when I hear back.

Peace

[JC63]

Okay, Thank you! I thought maybe they missed something with me.

[TJM]

1 hour ago, JC63 said:

Okay, Thank you! I thought maybe they missed something with me.

Heard back from my oncologist. They are going to target a mydisenel (sp?) Node and the general area of the surgery. It was the node that showed cancer that was the reason my tumor was upstaged to IIIA.

Hope that helps. 

Tom

[JC63]

Oh, okay....That would make sense. Thank you! 

JC

[Tom Galli]

TJM,

This captures my lessons learned from SS Disability application.

Stay the course.

Tom

[Rower Michelle]

That’s a good summary on SSD Tom. I learned the DIY approval rate for first round submissions is about 60%.  If an attorney files, especially one whose practice is SSD the approval rate is 98%.  
The rules changed not too long ago- if filed by an attorney prior to six months of eligibility there can be no attorney fees according to federal rules.  I paid a $250 admin fee to an oily shark type law firm that got my application done in less than three weeks.  In my case SSD got approved before my employer’s disability policy.  
 

Here’s another tip on SSD, if COBRA is needed and you have SSD, Federal rules allow for COBRA to extend from 18 months to a minimum of 29 months (longer if State law differs). Medicare eligibility kicks in after 24 months of SSD eligibility.  Very long winded way of saying that health insurance is available. One less issue to worry about.

 

 

 

[LouT]

Tom,

Good to hear that you have a plan and an experienced Oncologist to go to battle with.  You have such a good attitude that I have high expectations of you knocking this cancer out of the park.  I look forward to your updates and you're in my prayers.

Lou

[Brenda F]

On 2/13/2020 at 1:47 PM, TJM said:

Not a dumb question at all. In fact I have that exact question in to the oncologist now. I believe it will be targeted at the lymph nodes.  I'll let you know when I hear back.

Peace

Yes radiation is aimed at lymph nodes,

[TJM]

Just finished my head scan (MRI) to confirm no brain METS. I actually enjoyed it. Something about the beat and sound while taking the images. I would not be a bit concerned other than my cluster headaches have been coming on regularly and I am near the end of my Prednisone taper...which normally knocks the headaches back. So...like probably every other symptom I get from now till forever I will always wonder...is it that dang cancer.

Did decide to get a second opinion at OHSU for both the treatment plan and the prognosis. I am betting they have seen a lot more cases of Large cell than KP. And the prognosis from my onc is actually too good. He is still calling it curable with the surgery. That is awesome of course...but doesn't help with SSDI and really doesn't match what I have researched. Sucks I can't use the Dr. Google stats when I could benefit. Classified as NSCLC....so needs to be stage IIIB...but acts like SCLC in both aggressiveness and treatment. If it was classified as SCLC I would automatically get the compassionate care SSDI. Hence the second opinion.

Peace

Tom

[Rower Michelle]

Well let’s take the good news and run with it!  No brain Mets (and you breezed through the MRI) is      now one and done. 
As for SSDI, an experienced attorney can help.  For those who use a legal expert, the approval rate is 95%.  Worth every dime in my opinion.  It’s really in the physician’s documentation regarding functional daily impairment.  I went armed with a list of key phrases from the lawyer to my oncologist and said, not trying to tell you how to do your job but..... don’t screw this up for me.  
Remember, regardless of what the experts say, diagnosis is not prognosis.  Carry on. 
Michelle

[TJM]

12 minutes ago, Rower Michelle said:

Well let’s take the good news and run with it!  No brain Mets (and you breezed through the MRI) is      now one and done. 
As for SSDI, an experienced attorney can help.  For those who use a legal expert, the approval rate is 95%.  Worth every dime in my opinion.  It’s really in the physician’s documentation regarding functional daily impairment.  I went armed with a list of key phrases from the lawyer to my oncologist and said, not trying to tell you how to do your job but..... don’t screw this up for me.  
Remember, regardless of what the experts say, diagnosis is not prognosis.  Carry on. 
Michelle

To be clear...no results yet, just the scan.

As for legal help for SSDI I struck out last two days trying to get some. To the person they said they do not get involved until after denial normally. Had one guy said he would do it for 275 per hour but knew nothing about Lung cancer applications. I was very disappointed. So plan is to apply myself whenever I think it makes the most sense. I have little faith that I will not get a reoccurrence. If/when I do then it will be a done deal.

Peace

Tom

[Tom Galli]

Tom,

I believe there is no harm applying without legal help for SSDI on your initial application.  As I understand lawyer participation, they don't participate "at no cost to you" until there is a denial from SSDI.  I had to submit my denied application and the SS denial to the legal firm that filed my appeal. Then they decided if they wanted to take my case. These firms make their money when a denial goes before an administrative law judge and the judge orders the Social Security Administration to pay the claimant's legal fees. 

I've heard that SSDI now rapidly adjudicates disability claims from stage IV claimants and small cell claimants. Ensure your application captures your diagnosed type and stage.

Stay the course.

Tom

[D iane]

We applied for SSDI right away, we were approved in 30 days or so BUT don't for one minute ever think the government is going to give you your money back right away.  We were told to expect the 1st check in MAY 2020.  Benefit is 6 months from approval, then another 3 weeks to get into the check cycle.  I've heard there's some sort of compassion request you can make, we haven't done that yet.