Update

[TJM]

Been awhile since I posted an update. I have been staying up on the posts tho.

On last round of Chemo this week. Each round has been a bit worse side effect wise, but much of that is because of my cluster headaches. Bottom line is I am convinced the anti nausea medicine makes them worse so I quit taking and paid the price. Also, I think my problems two weeks ago could have been partly low blood counts.

Will admit this last treatment has me more stressed rather than less. Getting a brain MRI on Thursday, then a Cat scan on June 1st so scanziety might be part of it. Plus I am a tad worried about general radiation. Seems like more potential long term side effects. Meet with Rad Onc next week to get set up. 

I am looking forward to a three week break from treatment as I feel physically good after just one week.

Not sure what the long term plan will be as for work. I have a very stressful job that is not task driven. Since the odds are pretty good that I will get a reoccurrence I am questioning if I want to spend what could be myvlast few years working. Tho not rich, I am in a position to survive not working. Funny how much less money you spend when not working and in quarantine.

I feel blessed that I was mostly treated pre COVID and tho not a fan of my Governor at least I could continue treatment during lockdown. I really feel terrible for those whose treatment was affected 

Peace

Tom

[G.A.M.]

I'm retired, @TJM and I am astonished at how much money I spent just working. Gas (3 hour commute a day), lunch, clothing, shoes, unreimbursed expenses, et al. I have a small pension, a splash of SSI, and I have yet to touch my 401ks or IRAs. I still do some work from home, but not a lot. I highly recommend it.

Why are they recommending general radiation? How many rounds of chemo did they go with?

Best,

Glenn

 

[Tom Galli]

Tom,

I worked for 5 years after 3 years of multiple treatments. I developed chronic pain as a result of multiple thoracic surgeries and 18 infusions of Taxol and Carboplatin and that pain really soared during stressful periods at work. Most difficult was the lack of sleep that stress-elevated chronic pain caused so I took social security disability. Here might be useful information on SSI disability applications for lung cancer patients: 

 

Questions? Don’t hesitate to ask.

Stay the course.

Tom

[TJM]

3 hours ago, G.A.M. said:

I'm retired, @TJM and I am astonished at how much money I spent just working. Gas (3 hour commute a day), lunch, clothing, shoes, unreimbursed expenses, et al. I have a small pension, a splash of SSI, and I have yet to touch my 401ks or IRAs. I still do some work from home, but not a lot. I highly recommend it.

Why are they recommending general radiation? How many rounds of chemo did they go with?

Best,

Glenn

 

G.A.M.

I believe they are just giving me first line treatment for Large Cell and ignoring the fact I had surgery. Like Small Cell, Large Cell has a high rate of reoccurrence and one of the nodes they found was the medysiinal (sp?). I've only had one consult with Rad once and it was weeks ago. He did not mention doing any radiation to the brain tho. I will ask next week. When I asked what they would aim at he said the node and the general area of surgery. Like I said I'll know more in a week.

Peace

Tom

[TJM]

46 minutes ago, Tom Galli said:

Tom,

I worked for 5 years after 3 years of multiple treatments. I developed chronic pain as a result of multiple thoracic surgeries and 18 infusions of Taxol and Carboplatin and that pain really soared during stressful periods at work. Most difficult was the lack of sleep that stress-elevated chronic pain caused so I took social security disability. Here might be useful information on SSI disability applications for lung cancer patients: 

 

Questions? Don’t hesitate to ask.

Stay the course.

Tom

Tom

I am looking into SSD. I am right at the board line for a compassionate care ruling (3A versus 3B) but got a,letter from my Onc that he kindly worded as not a good prognosis. I am going to apply once I get scan results. If I do have any METS that should push me over. If not I will apply with what I have 

Just found out I can get unemployment thru the CARES act so am applying for that as well.

Thanks for the info.

Peace

Tom

 

[MyWifeSCLC]

Hey Tom ... good to hear from you. You indicated a 3 week break so I assume any radiation wouldn't occur until then.

I wanted to comment on typical thoracic radiation. My wife's pain is almost solely based on the radiation path affecting her esophagus. She has days where she can eat semi-normal but in general she doesnt eat well. Sometimes magic mouthwash helps if given at the right time. Her radiation oncologist commented that she was atypical with the severity of the pain 6 weeks after completion if the treatment (April 7). With having both chemo and radiation at the same time, all toxicities can be heightened/increased and most certainly has happened in my wife's case.

I forgot where your cancer was but if it is possible to miss the esophagus with radiation, I would. The radiation path is key in that you are only allowed a certain amount of radiation to specific organs while treating the cancer with the highest amount. I suspect that the esophagus is allowed more radiation than the heart or other organs but I don't really know. Knowing what I know now I would have asked about the radiation path. It probably wouldn't have changed anything.

Note that the typical radiation my wife received (photons) cannot be given again to her main cancer and other areas receiving this radiation, again, since the maximum amount has already been given in that particular radiation path. Ask your radiation oncologist these things to make sure I told you correctly.

This post has been leading up to Proton Therapy! The radiation path amount with Proton Therapy is much different and in general has much less radiation to things not cancer. Unfortunately, insurance doesn't normally pay for it. When you are 65 Medicaid (or Medicare?) pays. That's just sad! More clinical trials are needed before insurance will pay. The difference is photons vs protons and the amount of radiation along the path until hitting the cancer.

I'll stop rambling but hopefully I have given you some things to talk about with your radiation oncologist.

Steve

[Rower Michelle]

Hey Tom, 

Good to hear from you.  Glad you are trucking along.  Scanziety bites.  We all know it.  No real way around it, only through it.  Before COVID, I scheduled a bunch of spa appointments in the week leading up to the big day.   Looking forward to doing that again someday soon.   

Just about every surviving cancer book I've read has a section on jetting stress, particularly from employment, out of your life.  Stress created a chronic state of inflammation, some think it places us at a higher risk for recurrence.    You've gotta love those docs who know there way around the SSD documentation.  Here is KC, you're less likely to get denied if a well known shark type lawyer with a strong track record files the claim.   It's a major hassle to pull together the requirements, and totally worth it in the end.  

In NJ, my mother had no access to outpatient oncology and has spent the last 14 days inpatient for a totally avoidable admission due to low sodium levels.  Thanks to @MyWifeSCLC Steve for all those posts, I knew what to expect.  Totally backwards, the way NJ is handling this COVID crisis!!! 

Carry on! 

Michelle