[Brain MRI.... was it the right thing to do at this time?]

thank you all so much.... everyone is absolutely right...and although I tried not to borrow trouble, the weekend was very difficult especially since i did not tell my husband about the messages or my suspicions... i spoke with my mom and my son and both agreed that telling him over the weekend would only make it more difficult...

he probably would have been asking millions of questions that I need the answers to MYSELF.

Well here I sit about 45 phone calls later....still no specifics other than the radiation onc wants to see us at 2pm

we are off now.... i will try to come online later today....

thank God for this site....it helps so much to be able to vent here... and EVERYONE is so supportive of each other...

my only hope is that i can give back as much as i get....

Lisa

[Brain MRI.... was it the right thing to do at this time?]

thank you all so much.... everyone is absolutely right...and although I tried not to borrow trouble, the weekend was very difficult especially since i did not tell my husband about the messages or my suspicions... i spoke with my mom and my son and both agreed that telling him over the weekend would only make it more difficult...

he probably would have been asking millions of questions that I need the answers to MYSELF.

Well here I sit about 45 phone calls later....still no specifics other than the radiation onc wants to see us at 2pm

we are off now.... i will try to come online later today....

thank God for this site....it helps so much to be able to vent here... and EVERYONE is so supportive of each other...

my only hope is that i can give back as much as i get....

Lisa

[Brain MRI.... was it the right thing to do at this time?]

Hello Everyone,

Last weekend I was out with my son and my husband. We had been sofa shopping on Saturday but went home to think it through. We breifly looked at some local ads for tag sales and second hand sofas bu finally ruled that option out b/c with Ahmed sick it is difficult to move any thing that big. So by Sat night we decided to go back to the store on Sunday and order the one we wanted.

We Sunday comes and we all get ready. It was about 3:00pm and we were still waiting for my son to come out of the shower. My husband kept asking what time does the store close. I said maybe 5 or 6, but wasnt real sure....

Anyway we finally get onto the highway around 3:30pm and head up to the store. we got about 2 exits and my husband started asking, "Where are we going?" I reminded him, "to the store to buy the sofa" He got real angry and kept saying is this what we planned??? I was puzzled b/c I wasnt sure where he was coming from? I asked him if he wanted to stop anywhere else first. He said "thats it, this is not what we planned, I'm getting out of here" and he opened his passenger door.... He freaked me and my son out...my son grabbed him from behind ( I was driving 65mph)..... I grabbed hold of him with my right hand.... we got him to shut door.... I was HYSTERICAL now, crying etc... I got off the highway and pulled over.... 'why are we getting off the highway" he was saying... after i calmed down a bit i told him that i did not understand why he did that.... he swore he didnt do it.... i told him we were going to the hospital instead....

He got so upset and was saying stuff like "oh so you thingk i am crazy".

We sat for a while and calmed down.... he told me he thought i was driving to the beach....and he thought he opened the door when i got off the highway.... i didn't know what to think.... is this brain mets???? is it all the meds he is on b/c the meds HAVE effected his personality in a big way....he is very easily agitated now and ALL of this is out of the norm for him.... he said please we dont need the hospital now.... i am just tireed from the meds.

my son and i decided not to take him to the ER on a sunday and put him through all of that when they prob would not do anything anyway until monday....

monday we saw an on call doc re: swelling in his hands and face and legs...(our onc is on vacation until next week) .... the on call doc sent him for an ultrasound to r/o blood clot.... (results of that were no blood clots )

when the nurse started down the hall towards Ultra Sound with Ahmed in the wheelchair, I snuck back to the doc quickly and explained what had happened, I told him i didnt mention it in front of my husband b/c i did not want to embarrass him...

he said he would order a brain MRI

Well he was okay with news of the test and had it on thursday....

Friday my cell phone was dead....forgot to plug it in.... and when i checked for messages last night i had 12.... 6 or 7 were from all different docs...first from the on call doc saying he wanted to make sure that the radiation doc called us...

then from the radiation doc 3 or 4 times saying they needed to see us that day....

then a couple of calls from doc in New Haven that i had never heard of before.... i think from the message they said they were from the GAMMA KNIFE CENTER???? I'm not sure, does that make any sense...

anyway, not one of the calls indicated why the urgency nor did they mention at all the brain MRI.....

my son told me not to jump to conclusions but this MRI is the only thing that could have triggered all those calls, we had nothing else scheduled until the 20th which was just a follow up with the onc re: Iressa .

I am so scared. Scared of what the results are and scare of the consequenses and the TX.... all that i have read is that tx's involving the brain are tough on the patient.... i feel like perhaps i opened a can of worms....

when we found out he had mets to the liver , bone and adrenal gland, the onc said he wouldnt do anything right now in the way of radiation.

He said it is much more important to get the chemo in.... chemo was systemic and might not be tolerated in combination with RT which was Ahmed's experience in the beginnin....RT was a nightmare for him.... for 7 weeks he could only drink shakes b/c everything else burned in the esophagus going down....

my concerns are plenty... i wish his onc was here...i dont like going to all these appts we are being referred to w/o his advice.... second did i jump the gun with the open door on the highway thing...what if it was the meds?

he hasnt acted strange at all since that happened and except for the mood swings.... is other wise himself.... i dont want him to go through all this hell b/c of one episode which if my son hadnt been there too, my husband might have been able to convince me wasnt a big deal....

oh what to do...

Lisa

[Heroes, NRA & Lung Cancer]

My 14yo son , who began his first semester of college last week, took English 101 in a college summer course.... he had to write many essays.

Two that will stand out in my mind forever are his essays on What is a Hero? and another on the NRA.

At 14 (he just turned 14 on 6/26) he spoke of heroes as being those who fight against diseases such as Cancer. He went into great detail of genetics and immunology and how those who give the most seem to benefit the least but they don't even notice it because they are so focused on their mission.

When he had to write an essay about the NRA (National Rifle Association) he took a postion that surprised me. He said that although criminals with guns are a threat to society, far too much money and attention is spent on this cause.

He said the thing we should be afraid of in this country is CANCER!

While approximately 11,000 people die each year from gun shots, Lung Cancer alone kills more than 190,000 per year.

He made me think of all the things I have been afraid of all my life....

-->afraid of flying because the plane might crash

-->afraid of driving in the rain or snow becuase the car might crash

-->afraid of gangs with guns

-->afraid of carjackings, hijackings and terrorism

-->afraid of burlars, muggers, rapists and murderers

I NEVER thought of CANCER.... I am a nurse and I NEVER though of CANCER until it hit.... and although I am not the one with the cancer, I may as well have been.... this disease hits you and your family worse than any gun shot or plane crash....

It took my 14 year old son to make me ask "What am I afraid of?" "What are we afraid of?"

The answer..... I am afraid of CANCER!

Don't get me wrong, this realization is not to bring me or anyone else down, in fact it has done the opposite for me.... It has made me focus....rather than wasting my time being afraid of everything, I can focus on doing something about this..... letting everyone know that CANCER is out there... it is lurking.... and somehow, someway it WILL affect your life or someone you know....

We have to try to stop it now....

We have to try.

14 y/o's are so wise.....

We have to try.

[How do you handle being told you are terminally ill?]

Excellent points, Cheryl.

I completely understand what you are saying about keeping your profession quiet.

When we were at Yale, Ahmed kept telling everyone "please talk to my wife, she's a nurse". At first I thought it might help to get things done, you know, maybe someone would show a little "professional courtesy".

Not only did we not receive much professional courtesy but in fact the opposite happened. Many of the docs and nurses blew us off when it came to explaining the diagnosis, patient education, etc... Everyone kept saying " well, your wife is a nurse, she understands" I had to keep shaking my head and begging for information from docs who had one hand on the doorknob.

I realized that we should probably try to keep it quiet for a couple of reasons. First of all, I am a new nurse. I graduated from an RN program in MAY 2003. Secondly, I was not a cancer nurse and new little of the specialty until this Dx. (I am a home care nurse but haven't worked since Dx in April).

When we changed docs and hospitals, I told Ahmed to try to play the nurse thing down a little. At our first consult with Dr. Coscia, he already knew I was an RN from our family doc but I thoroughly explained my experiences and my need for details and to be treated like any patient without a medical background. Thank God, he totally understood.

Afterall, nurses like doctors do not know EVERTHING and in fact look at all the specialties we have. There is a reason medical professionals choose specialties, so they can be great at one and not be labeled as Jack of all trades, master of none.

On another note, I completely agree about the activism thing. I am told that nurses in general are notorius for not being activist.... I for one do not intend to follow that stereotype. When my husband was first Dx'd, I thought to myself, "someday I will speak out against this ugly disease but right now I have to focus on us".

I guess I am finally at a point where I realize that you cant wait for someday... somehow I will find the energy and time to do both, NOW. We don't have time to say someday with lung cancer. This disease doesn't afford it's victims the luxury of TIME!

I have read some of the threads on activism and see some great ideas pertaining to the media, walks, etc...

Now don't laugh but can't we sue congress or the US government or something to get more money into research.... what about organizing marches on Washington or speakers, etc...... class action law suits usually get attention.... so do major protests....

I am thoroughly disgusted when I read things that give me the impression that somehow lung cancer gets ignored because people might think that "it was the patient's fault for smoking".

First of all, even if only smokers got this disease, why the wouldn't you blame everyone who gets heart disease for eating to many cheeseburgers ( I wont go on and on, I am sure you get the point)

Secondly, people in this country need to WAKE UP! THIS IS NOT A SMOKER'S DISEASE!!!!! What on earth is going on with the volume of patients getting lung cancer who had "no obvious exposure or family history".

There is so much we need to look at here. I agree with the other replies also Cheryl. Although I am new here and am not at all familiar with your husbands posts or positions. But I am sure of one thing, WE ALL NEED TO AGREE TO DISSAGREE sometimes and bear in mind that the most important thing here is banding together to FIGHT THIS DISEASE!

We need people like your husband who have the dedication and desire to fight regardless of the method or style of his approach.. Again, I have no idea of his style but in my experiences sometimes the 'odd one out' gets the most attention... in this case, is that a BAD thing????

Okay sorry for the rant, my fingers are tired now, so I'll be back later.....

Keep up your spirits everyone... it's not over 'till it's over, and even then...

Lisa

[THANK YOU ALL]

Thank you everyone for your responses. I was so surprised to see how many people are actively reading this board.... I agree with all of you I am grateful I found this site but wish I never had to.

I actually discovered this forum in April, a couple of days after we were diagnosed but after reading a couple of entries regarding the changes in personality etc, that occur with brain mets, I found I couldn't handle it. It was so difficult for me to read about the changes everyone is going through, I was very depressed and shocked.

After beating myself up for a couple of days for not seeing this coming , after all "I'm the nurse"...I decided that I needed to focus on the positive and getting to Tx everyday and looking for more options, etc...gave me an avenue for what little energy I had left.

I started reading this site again about a month ago and discovered another side to it.... It truly is wonderful how everyone can come together in such horrible circumstances and share information, experiences and even offer support to each other...

Everytime we start something new I get my hopes up but for some reason we always end up with bad news....I keep saying we just need one break here.

My son has been very active in all aspects of my husbands care, especially knowing the right questions to ask the docs when I forget. He has been an amazing strength to me... we have always been a close knit family.... I know it is so difficult for him now....

My son has been asking me if he can post here as well.... I encouraged him to do so... i was wondering though, are there any other teens posting here?

Which is the best thread or forum to post in on a regular basis? Does it matter?

Also does anyone have any feedback re: the vaccine trial at Mary Crowley Medical Center/ Baylor University in Dallas.... tommorrow I will call to make the appt for a consult with Dr. Nemunaitis

Again thank you all so much, glad to know you're all here.

[NEW HERE....41 y/o husband, never smoked, has NSCLC]

Hello, I am fairly new here. My husband was dx'd with Non Small Squamous Cell Lung Cancer with mets to lymph nodes in April.... He now has mets to liver and adrenal gland.... just started Iressa. We are praying for a miracle....it's a good thing we believe in them!

I am 36 and a registered nurse. My husband is 41, NEVER SMOKED, and an accountant. We have a 14 year old son that we have homeschooled since kidergarten and he just began his first semester of college.

The following is our timeline:

3/04 My husband, Ahmed, came down with a cough, doctor said he saw small spots of pneumonia on xray

4/05/04 Ahmed was not getting better, took him to ER at Yale New Haven hospital, he was amitted w/ collapsed lung and to rule out TB

4/07/04 TB ruled out, doctor concerned with abnormal CT scan, Mass appeared on right main bronchus

4/12/04 Bronchoscopy to biopsy mass in airway

samples not sufficient, will need further testing

4/14/04 Esophogoscopy to obtain fine needle biopsies of lynph nodes, results = all were positive for Non Small Squamous Cell Lung Cancer w/ mets to lynph nodes on right side of chest and in the AP window (left side)

4/15/04 Surgeon refuses to remove right lung due to AP window lynph node involvement

4/15/04 Bronchoscopy with laser ablation of mass in right airway, lung subsequently reinflated

4/16/04 doctors say they want to be aggressive w/ treatment b/c Ahmed has always been very healthy, never smoked and is only 41 y/o

4/16/04 Brain MRI showed no mets

4/19/04 PET scan, docs say "nothing that we dont allready know about" -- no mets outside of right chest

4/21/04 Began six weeks of RT 1st dose of chemo (expect chemo to be 6 months)

Chemo = Mitomycin, carboplatin, navelbine

4/25/04 Rehospitalized with fevers up to 103.5

5/09/04 still no known cause of fevers, docs assume they are tumor related and D/C him with Rx for Alleve 2x per day....oh and they pulled his porta cath "just in case"

Porta Cath was clean and free of infection. Portacath replaced 1 week later.

5/18/04 chemo Tx #2...Mitomycin, Navelbine and Carboplatin

6/8/04 last radiation TX...appt with RT doc and Oncologist.... chemo Tx #3 scheduled for next week (6/15/04)

6/12/04 got call from chemo nurse...."congratulations, your dad is done with chemo"

ALL DONE???!!!??? he hardly began!!!! WHAT HAPPENED???? WHY STOP NOW?????

Oncologist said she re-read the article citing the protocol and it said stop after 2 Tx's

6/13/04 took Ahmed to Fox Chase Cancer Institute in Philadelphia for another opinion.... They said "NO WAY....DO NOT STOP CHEMO..."

6/15/04 took Ahmed to Dana Farber in Boston....they said the same and they called the oncologist at Yale. They called us back and said he could complete chemo at Dana Farber if we didn't mind travel to Boston because when they called Yale the oncologist said "I am not going to give any more chemo just to make them happy."

Dan Farber also disagreed with original staging and the involvement of the lymph nodes in the AP window....they said there was no evidence of disease outside of the right chest and that the pathology slides from the esophogoscopy "must have been mislabeled"

SCARY.... could he have had the surgery then???

After much research regarding our onc at Yale we discovered she is 78 years old and still PRACTICING !!!! Several docs said that the chemo she gave my dad was a much older regimen (about 15-25 years old) and much more toxic to the patient.

7/13/04 Dana Farber repeated PET and CT scan...showed progression of disease and now has mets to lumbar spine (L2 and L3)

7/15/04 found new oncologist closer to home that wants to be aggressive....gave us 2 choices .... "you can start chemo today or you can start chemo tommorrow." He started the same day with Taxotere 30mg/m2 every week.

8/18/04 Took Ahmed to Mayo Clinic in Florida... they said prognosis is extremely poor...less than one year....

they said Iressa was worth a try and told us of a clinical trial at Baylor University in Dallas for a vaccine for NSCLC

8/25/04 after 6 Tx's with Taxotere, repeat CT scan showed significant progression of disease ... now in left lung with mets to liver and left adrenal gland.

8/26/04 started Iressa...now we are praying for a miracle...we have also called for info regarding the vaccine clinical trial....we are praying he gets accepted.