Just found this site, Newly diagnosed

[Jerrye]

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

[Don Wood]

Jerry, welcome to the board and the family here. My wife's experience is similar to yours (see bio below), so if you have any questions of her I would be happy to relay. She does have arthritis, but is not on any medications since cancer treatment. She takes 60 mg morphine a day for the bone pain. She has been on Zometa since last June, which is for bone strengthening and preventing bone mets -- you may want to ask about that. Good luck. I see we are fellow Texans. Don

[SandyS]

Jerry -

43 yo female here myself - but mine is small cell - and has been in remission for almost a year now.

With each round of chemo, your blood counts and platletts dip a little deeper, resulting in feeling a little crummier, a little more tired each round. Everybody is different - you MAY still be able to squeek out a full days work, but then make sure EVERYTHING else is covered. Let someone else cook, clean and tend to the other details of your life, because you will need to rest in the evening.

Best of luck to you,

SandyS

[luvmydog2]

Hi Jerry,

Welcome to the board. While I can't answer all your questions, I am sure you will find the answers to your questions here. I was dx with NSCLC in 3/03. I never knew the stage. I had Carbo/Taxol just like you along with my radiation treatments. I had 5 chemo (1 weekly) and 30 radiation treatments. I had great results with this as it shrunk from 7.5 cm to a microscopic trace. I then had left lung removed. I never had any chemo after surgery so I can not answer your questions beyond that. Are they planning on surgery for you. I was able to work while getting treatments but had to get SS disability after surgery. Hope you are able to return to work and not have to go that route. By the way, if I am not mistaken, I think stage IV is automatic qualifaction for SS (if you qualify otherwise).

Good luck with your treatments and by all means come here and keep us posted. We will laugh with you or cry with you. We will listen if you need to vent. Who knows we just might make you laugh too. .

[Cindy RN]

Welcome. I am a 47 yo mom with sclc, diagnosed 3 yrs ago. I am still around. I have had 1 yr remission and this time I am hitting 8 months chemo free. The more the chemo the yuckier you will feel. BUT it gets better after the chemo is stopped, so it is worth it. If you think you may have trouble working, check into the Social Serviices about temp or permanent disability. Those things take time so the sooner you check the faster you may get an answer.

Again glad you found us, we are a good bunch Cindy

[Donna G]

Welcome Jerry. Keep us posted how you are doing. Donna G

[J.C.]

Welcome Jerry,

You will find a lot of information and many good people

that could help you if you have questions,

Hugs

J.C.

[Snowflake]

Jerrye,

I can't answer questions on chemo, I didn't go through it...

As for returning to work in a few weeks, what do you do? If you have a good ol' sitdown job, low stress, etc., you may STILL have issues with fatigue. I started back four months after surgery (and after radiation) and began with two hours per day, steadily adding an hour per day each week until I was back to full time. That is how the 'illness' was handled with my job.

The bad thing about fatigue is that it seems to drain the short-term memory. I had problems remembering a conversation from minutes before (and I'm STILL finding Post-Its from that time...of course, they don't do me any good because I didn't LABEL the darn phone numbers, etc.)

Good luck in the job, hope they allow you to ease back into it. It's not just a physical trip, it's a big mental one, too.

Becky

[SharKats]

Hi Jerrye,

Welcome from another Newbie. Like you, I am ever so glad I found this site. I saw some rather depressing sites before locating this one - I know just how you feel.

I am getting ready for 4th round of chemo next week and I have been having problems with being SOB upon exertion. I am almost 60 so I went on short-term disability through work until I finish my chemo. Do you have short-term through your work? I think it's important we rest and don't add too much fatigue onto what the treatment already causes. But everyone is different so you may be just fine with working.

I just wanted to welcome you and wish you the very best!

[Elaine]

Jerre

Welcome to the best place on the net. I am newly Dxed too and am your age--only a year older.

Does your company offer short or long term disability?? I imagine with your dx, you qualify for long-term, if you have that coverage.

I am still in shock over my dx, so I know it can be rough. If you ever want to talk, just PM me

Do you have kids?? That has been the roughest thing for me

Elaine

[mhutch1366]

Hi Jerry,

I was 44 when I was diagnosed with a stage IIIa pancoast tumor, which most figured was the end of me, as it had involved much of my shoulder and neck, messed with the blood vessels into my head and the nerves..'

I had 25 days of radiation with a 6 day chemo at either end. Seven weeks later I had surgery, upper lobe left removed, and then two more rounds of chemo, finishing on Halloween. I ran out of leave time in Feb, so for two weeks I worked half time, and then I went full time. I was wiped out and slept alot when I wasn't working, but I did it. I didn't do much else during chemo and waiting for surgery, as my boss requested I stay out until I was finished with treatments.

I do know plenty of people who work full time through the chemo, though. So much of this is individual.

Good luck, and I hope the chemo isn't too bad. You are young and otherwise in good health, so you should be able to weather the chemo pretty well (according to my oncologist...)

Take care and keep us posted,

MaryAnn

[ahhappy]

Welcome. I'm not really new but I don't do a lot of posting. Just a lot of reading. And this is a very upbeat place. There are a lot of wonderful people here.

I just wanted to say that my mom has stage IV nsclc diagnosed in 1999. She just passed her 5 year mark on February 9th! She has mets to the brain. It's a battle but there is definitely a lot of hope! It's great that you have a positive attitude--that can do nothing but help!

Amy

[Connie B]

Jerrye,

WELCOME! So sorry you needed to find us, but am glad we are here for you. I can't add anymore to what the others have said, but I did want to welcome you.

Amy, Regarding your mother being a 5 YEAR SURVIVOR of stage IV, WOW, that is AWESOME!! HOORAY!!! I know a lady that is a 4 year Survivor of Stage IV and she is doing VERY WELL and cancer free. I also see your from Minnesota, hello neighbor! Not that other states don't have OUTSTANDING treatments for lung cancer patients, I think Minnesota is pretty aggressive in most treatments for lung cancer patients. CONGRATES to your mom.

[bphyllis]

Hi, I am 49 and have just started the carbo/taxol. I have not had too many side effects so far. This is the 10th day since my treatment and I do feel tired and my shoulder hurts which it always seems to do with chemo. I have always managed to work pretty much full time through everything except when I was first in the hospital for two months in 2001. I only worked part-time during the radiation. If I could live on social security disability at this point I would definitely take it. I just don't see how people afford to support themselves on it if they are single with a child. It is an individual thing. Good luck.

[Jerrye]

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.

[Don Wood]

First, you have to realize and accept that you can't ever go back to "the way we were". That period of your life is gone. Second, you have to want to set a new "norm" in order for it to happen, and take it one day at a time.

My wife had to go through those stages before she was willing to move on. Last August, after her pneumonia, she decided she wanted to get better and do what she could do (not dwell on what she couldn't do). She has been sewing a lot (a love of hers) and the work and goals in that area have sparked a new positiveness. She is even going to take training to be a caregiver to others with lung cancer, even though she does not know how long she will be around to do this! I think that's the kind of attitude you have to foster. Focus on something positive and work toward it.

Good luck. There are many cheerleaders on this board for you. Don

[DeanCarl]

Jerrye,

On September 25, 2003 I completed my usual 10hr shift as a metropolitan bus driver. A fast paced, physical, high stress job if there ever was one and one I LOVED! I was a bit more tired than usual and had a bit more muscle pain than normal. The next day I completed one round trip on my route (2hrs) and could not lift my arms above the steering wheel. For the first time EVER I had to call for a releif driver. I went to an urgent care close to my work and was told, after some x-rays, that I had pnuemonia and that there was "something else" in my right lung. A month later I had my final dx (see sig below). I went from active and physically fit (mostly ) to disabled and house bound (until I got my scooter) in ONE DAY! It has taken 5 months to come to any kind of acceptance of all this.

I wrote that to qualify the following: What you are going through is NOT "minor". Cancer is a life threatening disease. This we all know. What we are often shocked to learn is that cancer can be, for many, a life CHANGING disease. For the patient AND for the family. Gay and I have had to do (and are still in the proccess of doing) exactly what your husband said. We've had to re-evalute our life and decide what "life" ment for us now. We had to do what Don talked about and accept that the "way we were" was just that .... the way we WERE. Once that was done we are now in the process of asking ourselves, "ok, so NOW what?". Those answers are coming and it's kind of neat. The other day I was riding a bus on a route I used to drive. I started out feeling bad that I was sitting on my scooter rather than in the drivers seat. But then I started noticing a bunch of stuff I'd never seen on that route even after driving it for over 5 years. By NOT driving I didn't have to pay attention to all the ... er ... shall we say "less than skilled" drivers on the road and could take a close look at the scenery (it's a rather rural route). Beautiful stuff!!!

What you end up doing with your life will, of course, be up to you. My suggestion, if I have one, is the same as Don's. Take a look at what you CAN do. Maybe there's something you've put off that you'd like to do but didn't really have the time. Or maybe somethings waiting out there you never even thought of before. If you don't spend too much time worrying about what you can't do your eyes will be open to a whole WORLD of possibilities of what you CAN do.

Dean

[mhutch1366]

Dean Carl,

Thanks for putting this so well. I learn things from reading what you have written......

XOXXOXX

MaryAnn

[Jerrye]

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

[-Cheryl-]

Jerrye,

I too am age 44, and live in Greenville, Texas. I have NSC-Adenocarcinoma stage III A-B. I was diagnosed May 12, 2003. If you would like to communicate with me just PM me. I will be happy to help you through this if can.

Cheryl

[Mr Ry]

Jerrye,

I was a programmer when I was dx. For the longest time after I left work I thought getting back to work would return me back to normal. My life since lung cancer has and will never be normal again. I went from short term disability to long term disability to permanent disability from Social Security. When I filled out the forms for SS disability it was hard to give up normal. My family responsibilities became the top priority. Ry and I have three children, 16, 12, and 5. It became easy to get normal from my family.

Also one more similarity is I am artist. Your art maybe a good way back to a new normal. Good luck with all your choices. Take care, John

[Jerrye]

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