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Stage 3B

RHumphrey
Posts: 12
Joined: Mar 2013

I'm 46 and just got diagnosed with stage 3B non small cell lung cancer.  Just got a brain MRI and am waiting on the results.  I am looking for any advice on maintaining energy level and what to expect with the 6 weeks of chemo and radiation.  Mass is 3cm by 3cm In upper left lung.  If treatment shrinks it they may want to remove what is left of the mass.  The odds of survival on the Internet are not very encouraging.  This site seems to have a much better outlook on recovery than I have seen elsewhere.

dennycee
Posts: 647
Joined: Mar 2011

Welcome.  Please ignore those Internet survival numbers.  They do not reflect the new, targeted therapies.  If they find no brain mets you will remain stage 3a.  That means that they can still try to effect a cure.  At the very least it is treatable.  There are long term survivors of late term LC who have survived 15 & 20 years.  They check in only occasionally as they are out there living.  

Exercise is the thing that helped my recovery and energy level.  It doesn't have to be heavy duty exercise.  Stretching and flexability exercises can be done in bed.  Chemo radiation and surgery can be very fatiguing so don't over do it.  Staying well hydrated and nourished will help you the most.  Also, when treatment starts use stool softeners.  

I look forward to hearing more from you. 

RHumphrey
Posts: 12
Joined: Mar 2013

Thank you.  This site is much more helpful than the info I got from the doctor.  I was a bit shell shocked at the time and don't think my mind had fully taken in what was being said at the time.  You always seem to have questions when the appointment is over.  I feel much more confident about this situation after finding this site.

dennycee
Posts: 647
Joined: Mar 2011

Never be shy about calling the nurse or pa to ask questions if you need an answer Or more explanation.  get copies of all your test results and keep them in one place.  Write out your questions in advance if you know what you want to ask.  This list is quite comprehensive and leaves room for answers.  Always bring someone along to help record. 

http://cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf

RHumphrey
Posts: 12
Joined: Mar 2013

My brain MRI was clean so I start chemo next Tuesday and talk to a doctor about radiation Monday.  I was told chemo would be two days of chemo and a shot the third day.  Twenty one days between cycles.

dennycee
Posts: 647
Joined: Mar 2011

Good news indeed.  You must be able to breate again.  What chemo agents will you be given?  Will they do the chemo and radiation at the same time?   

RHumphrey
Posts: 12
Joined: Mar 2013

i don't know the chemo agents will be.  I am waiting for some prescription meds that I will have to take with the chemo.  Radiation will be at the same time.

RHumphrey
Posts: 12
Joined: Mar 2013

Had first chemo today.  Agents are Alimta and Cisplatin.  Total time in IV was about four and a half hours.  Doctor told me the effects should hit me in a week or so and to stop eating uncooked foods like lettuce.  Guess its steak and fries for a while.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Also 3B here, diagnosed April 2010, simultaneous radio and chemo, and I'm still kicking pretty hard with great quality of life. You can get through the radiation and chemo without big problems.

The stats you read aren't meaningless, but short of maybe getting some details of your life in order that you wouldn't want to leave undone if things went south, you don't want to dwell on them. They don't describe you as an individual. Hell, based on the stats, there's probably a 10% probability I should be alive right now. I'm 100% alive, so far as I can tell (pinching self to make sure).

Check in anytime; you'll get understanding and semi-educated answers out of the veterans here. Best of luck with the treatment.

JPare93372
Posts: 7
Joined: Mar 2013

Does it cause loss or severe soreness if used in esophagus or trachea area?

dennycee
Posts: 647
Joined: Mar 2011

My experience was very much like the Ex Rock n Roller.  My cousin or sister would chop up roast beef or pork chop very find (not purée).  I was able to do okay with smoothies and ice cream though.   I whole heartedly agree that you may want to start eating like it was that day though.  Throat relieving did not work for me either.  Mostly I just swallowed through the tears.  It is survivable and many people have terrific results with the magic mouthwash.  

RHumphrey
Posts: 12
Joined: Mar 2013

I was told six weeks of radiation.  Also chemo will be two days with an IV and third day will be a shot.  Twenty one days between chemo treatments then repeat for six courses.  If I can handle it then three more chemo courses.  Is this about the same as you experienced?  i have some steroids I will have to take and another drug each of the days of chemo.  I plan to try to work as much as possible during this whole process if I can.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Thirty-eight days of radiation (Monday through Friday), and three courses of dual chemo, one week on, three weeks off. The chemo weeks took the form of Cisplatin and Etoposide on Monday, Etoposide only Tuesday through Friday, and another Cisplatin the next Monday. No shots. Depending on the chemo, they may give you any number of other drugs along with. I remember Decadron (steroid) and Kytril (anti-emetic) every time, and something to make you pee like a racehorse with the Cisplatin.

I worked a fair amount during treatment, starting with on-site, then from home via computer with some off-hours on-site visits to avoid exposing myself to people, then computer from home only.

It's pretty likely that the last few weeks of radiation you won't feel like doing much of anything for any length of time. "Grand piano on your back" is how I would describe it. Some people may differ, but I think it's pretty tough to escape the fatigue even if everything else goes well.

RHumphrey
Posts: 12
Joined: Mar 2013

Saw the radiation doctor today.  Treatment starts next week.  Five days a week for seven to eight weeks.  When I asked about possible eating issues, he said the target area was far enough away from the throat area the most I should feel is more like heartburn and it should not keep me from eating.  i may get lucky with that.  First chemo treatment tomorrow.

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Good deal on that. If you can escape that side effect, you're 90% of the way to a problem-free treatment regimen, at least based on my experience. Best of luck!

dennycee
Posts: 647
Joined: Mar 2011

So glad that you are ready to start treatment.  Do be prepared with some aloe juice.  My doctor told me that I might experience some minor irritation.  She did not prepare me for the pain I would experience.  Knowing what I know now, I would still do it, just add the aloe juice.  

Ex_Rock_n_Roller's picture
Ex_Rock_n_Roller
Posts: 267
Joined: Mar 2011

Yes, that will happen if the radiation pattern overlaps or comes near the esophagus. Along with severe fatigue near the end of the course, that was basically the only noticeable side effect I had.

And although it came on me pretty near the end (luckily), it can be impressively painful, making it hard to swallow anything other than lukewarm water, and sometimes even that. I didn't have a whole lot of luck with the magic throat-deadening meds (they work well for some people), so I just toughed it out for a couple weeks. My recommendation would be to eat as though you had the problem even before it happens, and it may put off the onset. That means eating things that are slippery and go down fast. Counterintuitively, pasty but bland things like mashed potatoes are bad, because they can get stuck in one place and require a lot of swallows before they go down. I lived for a couple weeks on nothing but diced-up boiled hot dogs and boiled spaghetti.

The good news is that this usually doesn't last long, and so far as I can tell now, it never happened (i.e. I have had no lasting swallowing discomfort).

RHumphrey
Posts: 12
Joined: Mar 2013

I finished 8 weeks of daily radiation and start my 6th chemo treatment next week.  My CEA number started at 15.8 and went up to 24.6 durring radiation and now is 7.8. 

I am hoping after this chemo treatment that the following 3 are "maintenence chemo" with just Alimta and no more Cisplatin.

 

The radiation doctor said the mass in my lung was over 50% smaller than when I started radiation.  Chemo has been rough but I hope I am near the end of it.

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