I Have Stage IIIB Non Small Cell Carcinoma

[Chris48]

Hi All,

This whole ordeal has been a learning experience for me, since being diagnosed in Oct of 2007. I'm glad I found this message board from posts recommending it highly over @ ACS.

To begin with intro about me, I developed a persistent pain in my left shoulder, which I ignored for a few weeks on a belief that I'd pulled somehow pulled muscles in my back and shoulders.

Not having a primary care physician, I went to see a doctor at local "Doctors on Call" clinic and with no x-rays being taken - I was diagnosed as having an upper respiritory infection. The doctor prescribed a Z-pak and sent me home.

When my condition didn't resolve, and shoulder pain became worse I went back to the same clinic to see another doctor a 2nd time; this time I had chest x-rays done, (and while I was told I should be in our local hospital for treatment of pneumonia,) he put me on much stronger antibiotics (Levaquin) and an inhailer (Albuterol) and he sent me home - with directions to return in 1 week for new x-rays.

In one week, (and seeing a 3rd Doctor) - there was no change according to x-rays she ordered. My Right Lung was (and still is) fine, but the Left Lung was stuffed up with crud, and my diaprhagm was not functioning fully (it would get to point beneath ribcage and stop, as if my lungs volume was compressed, or diaphragms movement was obstructed.)

This Doctor referred me to a pulmonologist for evaluation, with my x-rays. Doctor examined me and then took me to look at x-rays. He said there were serious problems, and that he would like to do a CT scan of the Medastinial area of lungs to determine what the trouble was. Meanwhile my pneumonia had become more like Pluresy... I was given to coughing violently, and I was coughing up bloody plem.

I went in about 1.5 weeks later for a CT Scan. A large mass was found in my left lung. It was 8 CM x 5.2 CM x 8.5 CM. + two lymph nodes involved. Right lung was clear.

Next - the pulmonologist ordered a CT Guided Needle Biopsy. These samples were examined by the hospitals pathology dept, and when they couldn't come to a determination of my problem, the samples were sent out to Standford University's Pathology Dept.

Diagnosis: Indifferentiated non small cell carcinoma.

Of Course, by this point I was floored. How could this be happening to me?? I was told I had a type of cancer that was inoperable - because of Masses location being directly over my heart. I was told this finding doesn't mean that its incurable.

Once CT of head, abdomenal cavity, full body PET and bone scan all determined there had been no spread of this cancer (talk about major sighs of relief,) my Medical Oncologist recommended a course of treatment which incl Radiation (Combo Therapy.)

I would have 7 weeks of chemo with Carboplaten/Taxol (blood lab Weds, Chemo on thursdays) while having daily doses of Radiation during same period of time.

After completing a mock run to mark my chest with small dot like tatoos and make a fixture for alignment, and doing simulations - The Radiation oncologist determined I should recieve 20 Days worth of daily treatments, which consisted of full shot through front, half shot from the back thru spine (all later shots from behind were angled off spine.) Chemo and Radiation schedules were later changed to 9 chemo's and 30 Radiation days (due to a CT showing positive effects this Combo therapy is having on Mass - which is actually two tumors.)

At this present point in time: I've completed both the Radiation and Chemotherapy schedules.

My Medical Oncologist has planned to do two final "mop up" chemotherapy's (one is scheduled for this Thursday,) with Cisplaten and Taxol (plus preventative meds I'll be taking before and after.)

Once these two treatments are completed - it will be time for new scans to see where I'm at with my illness - and to determine what other courses of treatment to take.

I'm physically up to doing this chemo Thursday, but I'm not really up to it psychologically; esp at the prospects of being sick, or losing my hair, LOL. I'm sure I'll get over it by then.

[Muriel]

You've had quite a time Chris. Welcome. I'm glad you found us. We have lots of III A and III B people and lots of people who have done radiation and/or chemo. I had three XRays and 2 prescriptions for antibiotics for pneumonia before someone decided that my problems were a lot more than that. Good luck with your last two chemo treatments.

Muriel

[recce101]

Hi, Chris, welcome to the LCSC. I'm glad your found us!

It seems you've been getting good treatment after sort of a rough start, so let's hope for and expect continued response from your next two chemos.

If you can enter your symptom/diagnosis/treatment/scan data into a profile like you see at the bottom of our messages, adding more dates if possible, you'll help us give you better answers and also save yourself some repetitive typing each time you post. Here's how:

Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. From now on, your profile will attach to every message you send.

Let us know how it goes Thursday. Aloha,

Ned

[Ry]

Chris~

I am glad you found our board. I hope your next scans show that the cancer is shrinking. The beginning of this journey is hard, but it will get better -- keep us posted on how things go. Welcome.

Rochelle

[beatlemike]

Hi Chris and welcome. Prayer said that your treatment is effective. Mike

[SandraL]

welcome Chris. I am about a month ahead of you in treatment. Had combo curative doses of both chemo and radiation. My hair is all gone, and I really liked it. You must have had different chemo meds than I. It is a ride for sure. Lots of ups and downs. I have found the information and the folks on this site very helpful. I'm going to see my med onc tomorrow for the official word on results to date.

I will also be starting on a clinical trial soon. It's a vaccinne, trial is called START. It's for 3a or b folks who have had both chemo and radiation and have had a positive response. Let me know if you would like some more information on that.

take care and take time to read lots of profiles on this site..they have given me further reason for hope

[Heather_T]

I am glad you found the board. This is a great group here. I went through before diagnosis just like you. It took about 2 months before I was sent to get a ct scan. I couldn't tell you how many antibiotics. Again welcome!

[ztweb]

Welcome aboard. I am sorry you need to be here, but you have come to a wonderful place. There are so many loving souls here to help us along the way!

Good luck with chemo...water, water, water! That is my recommendation...and try to keep something in that tummy!

Blessings,

Jen

[Don M]

Welcome Chris

Don M

[Chris48]

"Don M"]Welcome Chris

Don M

Thank you all for the welcome to the boards here. I'm not sure how to shrink the signature portion below. Is there some code to achieve this for the whole signature block?

[dadstimeon]

Welcome Cris-- Glad you found us, stay with us and let us know how it goes.

Rich

[Manifest]

Chris, I appreciate you coming on and detailing your experiences. It is looking like I am in the same boat as you and my doctors are running the same protocol to help me.

I have my second Chemo this Thursday and am recieving radiation daily so I'm hoping for the day when mine is under control.

Having a second check by specialists next Tuesday but I'm not sure what they can say that has not been said.

Good luck with the rest of your treatment and please keep us updated.

Mark

[recce101]

"Chris48" I'm not sure how to shrink the signature portion below. Is there some code to achieve this for the whole signature block?

Chris, at the very beginning of your profile/signature block, type and at the very end type [/size ]. Note that you use [b]square[/b] brackets, not parentheses. Also, do not put a space before the right bracket -- I had to do that so the codes wouldn't take effect and disappear. With the codes properly inserted (no spaces), your profile would look like this:

Aug 28, 2007 -- The beginning of my Adventure.

Oct 3, 2007 -- CT Scan reveals a large mass in left lung lobe. its form factor is 8.0 x 5.2 x 8.5 CMs

Oct 23, 2007 etc. etc. etc.

You can shrink it further by using bold or a different color for the dates, then eliminating the blank lines. Look at the top of your message reply window -- the same codes that are there can be used for the profile.

Aloha,

Ned

[Patti B]

Chris-

Welcome to the forum. As others have said, this is a great place to be - everyone is so wonderful and helpful here.

Depending on what chemo you are going to get, doesn't mean you have to get sick. Maybe I have just been very fortunate, but the only time I got the least bit nauseated is when they gave me the wrong anti-nausea drug. Even when I was on Carbo/Taxol I just didn't get sick. So if you should, ask if they can change your pre-meds.

Also, as far as the hair goes - it is hard for us women. After my first chemo, I knew my hair would be gone very soon. A friend of mine and I came up with a plan. I didn't want to wake up one morning with my pillow covered, nor did I want to be all alone screaming in the shower when it fell out. So we planned a party. It was my way of taking some control. In the beginning, you have no control over anything - the docs tell you go here, do this, etc. This was one way of me to take control and lose my hair when I wanted to, not when the cancer and the chemo wanted me to. So we called up my closest friends and my sister and sister-in-law. Everyone brought food, and after we ate and drank, everyone got to cut a huge lock out of my hair!!! My one friend surprised me and had gone to the store and bought beautiful ribbon that said :my friend, I love you" and tied up some of my locks because some of my friends wanted them. After they cut my hair, my hubbie took the clippers and got it down to about 1/2 inch. When it was over, a couple of the girls said they didn't know at first if they could do it, but that they were so happy they did to help me thru a hard time. No one thought it was weird - it was loving friends helping someone!! Then I put on a beautiful scarf I had ordered. Now, 15 months later, my hair is back and I still dread the fact that I may lose it again someday but I know I can get thru it - and so can you!!!

Hoping and praying for good results for you - please keep us posted.

Many hugs - Patti B

[CAL]

Hi Chris,

Your post and those of others who have been lurking but not posting inspired me to join in the conversation.

As long as I've done things correctly you'll see from my profile that we have a fair bit in common re dx. I've finished first-line treatment now and continue to hope for excellent results -- time will tell.

In terms of treatment side-effects I didn't lose all of my hair but it did get a LOT thinner. It's now around 4 months since my last treatment and it's just started to grow back. While not a breeze I certainly found the treatments tolerable and in my case things like the anti-nausea drugs worked very well. The two things that were stressed were (1) to be sure to take the anti-nausea drugs when they should be taken (not when nausea strikes)and (2) get to the clinic or the ER in the event of a temperature (which happened twice to me and was caused by severely low white cell blood counts -- manageable but not to be ignored).

Wishing you the best with your treatments and look forward to hearing your updates.

Carole

[Chris48]

"recce101"]

"Chris48" I'm not sure how to shrink the signature portion below. Is there some code to achieve this for the whole signature block?

Chris, at the very beginning of your profile/signature block, type and at the very end type [/size ]. Note that you use [b]square[/b] brackets, not parentheses. Also, do not put a space before the right bracket -- I had to do that so the codes wouldn't take effect and disappear. With the codes properly inserted (no spaces), your profile would look like this:

Aug 28, 2007 -- The beginning of my Adventure.

Oct 3, 2007 -- CT Scan reveals a large mass in left lung lobe. its form factor is 8.0 x 5.2 x 8.5 CMs

Oct 23, 2007 etc. etc. etc.

You can shrink it further by using bold or a different color for the dates, then eliminating the blank lines. Look at the top of your message reply window -- the same codes that are there can be used for the profile.

Aloha,

Ned

Thanks Ned,

Here I've been doing message boards for a couple of years and I can't believe I forgot all about size= and /size (eye roll.) I guess that is how pre-occupied I've become with my modified schedule.

Doctor decided to break my "mop up" Chemo's down into 2 days, after figuring out infusion was going to take a long time to administer (9hrs +).

With the situation concerning my collarbone (info is in sig block) The Doc added Xomata to the list. On Thurs I was treated with Avastin and Xomata. I had no problems tolerating either one of these meds.

Tomorrow (Feb 18 ) I'll be going back for blood work followed, by my Cisplatin and Taxol infusion.

[Chris48]

"CAL"]Hi Chris,

Your post and those of others who have been lurking but not posting inspired me to join in the conversation.

As long as I've done things correctly you'll see from my profile that we have a fair bit in common re dx. I've finished first-line treatment now and continue to hope for excellent results -- time will tell.

In terms of treatment side-effects I didn't lose all of my hair but it did get a LOT thinner. It's now around 4 months since my last treatment and it's just started to grow back. While not a breeze I certainly found the treatments tolerable and in my case things like the anti-nausea drugs worked very well. The two things that were stressed were (1) to be sure to take the anti-nausea drugs when they should be taken (not when nausea strikes)and (2) get to the clinic or the ER in the event of a temperature (which happened twice to me and was caused by severely low white cell blood counts -- manageable but not to be ignored).

Wishing you the best with your treatments and look forward to hearing your updates.

Carole

Thanks Carole... hopes things are going well for you too. Today hasn't been too great of a day for me. The pain from this broken right clavicle has been so unbearable, I finally called my doctors exchange tonight. She called me right back.

On weds, She initally prescribed Fentanyl 12MCG patches for the pain, and its either too low of strength - or this batch of patches are defective.

Anyhow, I hope to get this mess straightend out before Chemo tomorrow.

[CAL]

Chris, sorry to hear about the severe pain in your clavicle. I haven't had bone or fracture pain but understand that it can be quite nasty. I hope that you've received meds to alleviate.

I've also had something of an up and down time since I last posted and am concluding from my own experience thus far and the experiences of others that I've read on this board that this will not necessarily be an easy ride into known or predictable territory but it sure will be an interesting one.

I've certainly had my periods of optimism as well as my periods of doubt and despondence. It encourages me to remain optimistic when I read so many positive profiles and messages on this board. I also figure that if I'm fighting to stay here and beat this dreadful disease then I can control how I respond day to day (I know far easier said than done) and refuse to let doubt and despondence occupy my orientation and thoughts.

All best wishes for the best.

Carole