[I have Missed you all]

Carleeb,

I too have had excruciating pain in my left shoulder blade radiating done my arm for at least 8 weeks. The dr's have xrayed, bone scanned, CT scanned and PET and see nothing, I am having an MRI next week for a extra check. But so far, the general consensus is that it is stress related. No, REALLY?

I began going to a chiropractor that I have used for years and he is working on the muscles only. I also began acupuncture last week. I have seeing a HUGE inprovement. Before, it hurt all of the time, getting worse in the evening and becoming unbearable at night (or during weather changes, such as thunderstorms).

Yesterday, for the first time, I did not take anything for pain until about 1:00 in the morning when the pain woke me up and that could have been caused by the bad thunderstorm moving through the area.

Long story, but just a thought, acupuncture and or chiropractic care may give some relief.

Also, the acupuncturists suggested working with me on the cancer. I think I'll try it. Most changes she suggested were diet (juicing raw vegetables, and eating 80% veg/fruit and 20% protein) and finding the CHI that is congested. Don't know if I believe the CHI thing, but I'll try it since sticking a bunch of painless needles in my body for 30-40 minutes could be worth the outcome.

You and your husband are in my prayers....

Jerrye

[I just don't know what to do]

I feel better that it is not the onc that is the problem.

I do not have any experience with negativity from family members. I will have to defer to others on this board that have had more experience with this sort of situation. Hopefully they can give you suggestions.

Take care,

Jerrye

[I just don't know what to do]

Run, run, run to another oncologist! Get another opinion. What was the fever from? Is he better now? Other than the recent episode, is he in pretty good health? I would have a real problem with my doctor playing God and making a decision for me of quality over quantity. Who is he to say what is quality? Is he refusing to treat your Dad? Sure, the chemo and radiation treatments are rough, but they aren't THAT bad. My main complaint has been fatigue. It gets old, but I would rather be fatigued for the next 10 years and be alive waiting for a cure. I'll put up with a lot to have that chance.

I apologize for my rant. I know your are worried and confused about what to do next. The dr could be correct in his assessment, but you will never know unless you seek another opinion or 2 or 3, if only to put your mind at ease.

You and your father are in my prayers.

Jerrye

[Back from Florida]

Tbone,

I have mets to both femurs, sternum and pelvic bone. Went through 15 rounds of radiation. The radiation took away the pain, but I must warn you, the pain got worse on my pelvic bone before it got better. Something to do with the position of the tumor and swelling of the adjoining good tissue.

The good news is, I am virtually pain free in the areas that were radiated, just a little occasional soreness. Bad news is, dependent upon where the tumor is, radiation in this area can effect the rectum, just as radiation to the lung can effect the esophagus. Rather unpleasant, but worth the pain-free results.

Good luck

Jerrye

[Just Curious...]

After 2 cycles of Carbo/Taxol I have lost 90% of my hair. What is strange is that the remaining hair, including my eyebrows is much lighter. I thought I was imagining this, until my husband and niece commented that my hair is much lighter. (medium brown to light brown/dark blond)

Has this happened to anyone else?

Thanks

Jerrye

[Question about low-dose Chem0]

Elaine,

I had low dose chemo(Taxol/Carbo), once every week for 3 weeks at the same time I had radiation to my sternum, right femur and left hip. I did not have any side effects, my blook counts did not even dip.

In fact, I thought this chemo thing was a piece of cake - until I got my first full dose chemo 3-1/2 weeks ago. Even after the first full dose, I mostly had extreme fatique and constipation as a side effect (and of course my hair is falling out). Go for it, you will never know until you try.

Jerrye

[Duck]

A duck goes into a bar and asks the bartender - "Got any grapes"?

The bartender responds - "No!"

The next day the duck returns and asks the bartender - "Got any grapes"?

The bartender responds - "No!"

The third day the duck returns and asks the bartender - "Got any grapes"?

The bartender responds - " No and if you ask again, I will nail your feet to the floor!"

The fourth day the duck goes into the bar and asks the bartender - "Got any nails"?

The bartender responds - "No!"

Duck asks "Got any grapes?"

[Advantage of losing hair...]

Well, I got my hair cut short this morning, looks like a Wynona Ryder cut. I am petite, so it works - good thing, since after getting used to the look for about a week, I might get the same do again... in about 6 months.

I am going to enjoy it while I can.... I think I might go shopping at Saks this weekend...

Get it? Wynona Ryder, Saks? HA!!

Next, the Telly Savalas/ Yul Brenner do.

Wow, can you think of any other disease where you can look like so many famous people in such a short time?

Connie,

I thought about your suggestion.... but, my hairdresser would FREAK. But, I am still hoping for total leg hair loss.

Cindy RN,

I will PM you for your chemo method if the leg hair is stubborn, might as well get something out of this.

If I had only know about this a year ago, I would not have spent the money on the bikini line laser hair removal, chemo/radiation is MUCH more effective and covered by insurance!

Jerrye

[Advantage of losing hair...]

Fay,

Today, my hair started falling out, tomorrow, I get it cut short. I knew I was tempting fate when I had a $140.00 cut and color the Saturday before my dx!

I am amazed how accurate the "fall out" date was. Maybe the developers of Taxol can train weather forecasters and we can get an accurate 14-day outlook.

Seriously though, I have heard everything from

1) I will lose ALL hair, everywhere.

2) It might only thin considerably.

3) I might not lose eyebrows and eyelashes until later.

With my luck, I will lose everything except on my legs, and I will have to continue to shave them... bummer.

Thanks for the laugh... Please keep the beauty tips coming...

Jerrye

[Just found this site, Newly diagnosed]

I want to thank everyone for your encouragement, suggestions and experience.

Last night I slept through the night for the first time in 2 months. Your input has helped me immeasurably. I think I am on the road to creating my new normal.

Jerrye

[Just found this site, Newly diagnosed]

Don and Dean,

My thanks to 2 very wise men. You are correct it is WERE. I have been dealing with the disease for the last 2 months and nothing else. I need to create a new normal.

Even if God taps me on my shoulder tomorrow and I no longer have lung cancer, my world has shifted. At the young age of 44 (or at any age, no one can be prepared) I have been forced to face my mortality. I was resolved to fight the disease, but hadn't dealt with creating a "new normal"

Dean, I liked the story of your new perspective about your bus ride on your former route. You are right - I am used to watching out for my "less than skilled drivers" in the corporate world and have not taken the time to actually "see" the scenery.

Don, your are right there is much that I can do, I am lucky that I am not much physically limited - I walk alot slower and trying to get the bones strong - am taking zometa.

I used to paint quite a bit when I was younger - my husband bought me a complete outfit of new paints to occupy me. Until now, it has been set up and I have not much used it - but now, I think that I am getting close to being ready. Really, daytime TV is the pits and I have NEVER liked it - time to move on....

Thanks to all and God bless.

Jerrye

[Another Newbie]

Lindalu,

I am new to this as are you, dx'd in January. Regarding your question about RA, how long have you had it? I was dx'd with "classic onset RA" 11/2002. Did you take Humira? I have suspected that the Humira contributed to the NSCLC, but I am now wondering if the symptoms that were dx'd as RA were actually NSCLC?

Anyway, I am not having any symptoms of RA now, except for stiffness in the morning. I can't imagine going through this dealing with RA also.

My thoughts and prayers are with you that your test results are good.

Jerrye

[Just found this site, Newly diagnosed]

Thanks to everyone that replied. Ya'll made my day. Yesterday, I was kind of down, hence my post about future side effects and return to work. I have a high stress, fast paced job and I do not know if I can or want to do it at the same pace anymore. I guess I need to rewrite the definition of what is me. For many years, it was my success in my job and marriage. I think lung cancer requires a new definition.

Wondering if things will ever be "normal" again, my wonderful husband told me last night (our 14 year anniversary) that we need to define a new normal - Get well and enjoy life. (he is much more layed back than I am, I knew he is a keeper!)

I have been on short term disability since mid January and there has not been a financial implication. My bone mets needed immediate attention to stabilize and relieve pain. Full chemo was not started until 03/03/2004.

I am very lucky. I do have somewhat of a choice about returning to work. If I choose to remain off work, my STD and FMLA do not expire until 04/15/2004. I can then exhaust sick time and vacation and move on to LTD at 60% pay (after about 6 weeks) until 65( I am shooting for this!).

This is not my problem. How do you change from working 60-70 hours a week at a career you loved? I love the job, but at this time can not face the stress required to function at full capacity. How can I go back at less than full capacity?

I know that these concerns are VERY minor compared with what others on the board and I are facing, but how can I do as my husband suggests and create a new "normal"?

I guess I am getting ahead of the game, but I am a programmer and definition is a way of life for me.

This is way deep for me, but I can tell yo that I am NOT depressed, just wanting some info from others.

WOW! I feel better.

[Just found this site, Newly diagnosed]

I was newly diagnosed with NSCLC Stage IV w/ bone mets in January 2004.

I found this site after looking at some pretty depressing ones today. This is the only site that I have found that people seem to be upbeat (which is how I feel) and survival of the members looks much better than statisitics. I would like to think it has something to do with attitude.

Had 15x radiation to 3 bone areas and am pretty much relieved of pain. Had 3x 1/2 strength weekly carpo/taxol during the radiation. Just started full strength chemo last week and it pretty much kicked me in my butt for about 5 days(fatigue and bone pain). I am female, 44 y/o and in excellent health (other than the cancer). I am supposed to have 4-5 more courses of the chemo every 3 weeks. What can I expect? Will the fatigue/bone pain get progressively worse with each treatment? I am supposed to go back to work on 04/01/2004, and do not know if I can handle it full time. Any suggestions? My HR department doles the info out sparingly.

Also, I was on Humira for 5 months before onset, for rheumatoid arthritis, (which is in complete remission) I suspect that this may have something to do with my suspectibilty to the cancer(drug supressees Tcells). Of course, it is a mute point now, treat the cancer! Has anyone heard of this involvement?

Thanks for any info,

Jerrye