New to board and diagnosis

[jeanetteb918]

First time I've posted on a board regarding diagnsis of cancer. Here is my story -

Divorced 53 yr. old female w/soon to be 16 yr. old daughter. I live in small town in Oklahoma.

In January I left long term employment w/a great company to go into new field with risky company. Began not sleeping, loosing weight, depression which I attributed to stress of new job.

In June I started feeling lightheaded at times w/cranial pressure. Nothing painful but bothersome.

Went to the doctor around middle of July and was referred on to ear, nose, throat specialist with appt in August.

On July 23, had seizure at work (that was a trip) and ER doctor told me I had several brain tumors and lung tumor and must go to larger hospital to neurosurgeon.

Did MRI, CT scans, and bronchoscopy all night after arriving via ambulance at larger hospital. Initially said they would do surgery to remove brain tumors but put if off for several days due to weekend and more conferences needed. Also had another seizure while in hospital.

On my birthday, 7/28, neurosurgeon told me surgery was not an option any longer and radiation oncologist would be in to talk to me. The oncologist told me and my family that I was stage IV and had (statistically speaking) 6 months left, give or take 3. Lung tumor was probably 2 years old and brain tumors started 6 months ago.

Said I should start radiation immediately to shrink tumors in brain. Did 13 entire brain and 13 entire lung radiation treatments. Finished about 3 weeks ago.

Went for my rescan last week and then met with chemotherapy oncologist. He recommends 3 months of chemo using Platinol-AQ and Gemzar. When I asked what I would get in return, he said it would probably extend my time by 3 months. They only rescanned brain and the tumors did shrink!

I called MD Anderson to see about getting in there for 2nd opinion.

Been like bad dream. Shopped online for caskets today then made reservations to Florida for me and daughter. (is that ying and yang or something?)

Has anyone had experience with a estimated lifespan of 6 months and/or MD Anderson?

Just looking for information I can use for either hope or planning.

Thanks for taking the time to let me introduce myself.

Jeanette

[recce101]

Hi, Jeanette, welcome to the group! You've had a rough couple of months, that's for sure. From reading your post, it seems to me that you've received very good medical treatment so far and that some excellent decisions have been made by you and by others on your behalf.

You should be getting some more answers in the morning when our mainland members wake up, but since it's still your yesterday evening in Hawaii I'll jump in with what I can tell you.

Prognosis statistics. Since you used terms such as "statistically speaking" and "probably," it appears that these figures were presented to you along with some explanation of how they should be viewed, and that you understand they are just general averages/means for a very large number of people who received a similar diagnosis in the past. There are many factors involved, and some people do worse, while others do better, even much better, than these numbers. We have members who were given a prognosis similar to yours 1, 2, 3, or more years ago and are still doing well. You'll be hearing from some of them, and you can also browse through the My Story forum for some interesting reading.

M.D. Anderson. I assume you're referring to the center in Orlando. We do have members who go there, and from what I've heard they are quite happy with it. One of them, "Judy in Key West" (username jaminkw) drives from Key West to Orlando every 3 weeks or so for treatment, and she can give you more details on the facility.

So we're both Leos. My birthday is 1 day (plus 20 years) before yours. Best wishes and Aloha,

Ned

[Patti B]

((((Jeanette)))

So sorry you found the need to be here but this is an awesome site with some great people.

PLEASE do not listen to statistics and "timeframes". I just passed my 2 year anniversary from diagnosis this past Monday and I was told only 1 year. MANY, MANY people here have lived long past any so-called expiration date. Doctors really don't know how YOU are going to respond. Their statistics are based on overall statistics and my original doc even told me that many of those statistics are based on very elderly patients who have other medical problems.

I know how hard it is with a child - my son turned 16 in July. In the beginning he was quite angry and we argued alot, now, except for those normal teenage moments he has, he is my biggest supporter.

Please continue to post and let us get to know you better.

Hugs - Patti B.

[MsC1210]

Hello Jeanette and welcome to the "family"

I am so sorry you had need to find us but very glad you joined!

I want to also say this in regard to statistics... Stats are numbers, lots of times out dated numbers, and are all about averages and based on huge groups of people. YOU are an individual with unique qualities. Nobody can tell you how you will respond to treatments, etc, that is all to be determined. So forget the numbers and time lines and all that and put that energy into positively fighting.

I am very glad you have begun looking into 2nd opinions. That is something that is recommended here, and if the 2nd opinion is not enough, get a 3rd or even more. It is important to find the "right" doctors who are willing to treat this in the way you want.

Please keep posting and let us know how we can help you. We are always here and we care and will do all we can to answer your questions and provide you with support and hope.

Warmly

Christine

[JB]

Jeanette, First sorry to hear of your struggles, but I have a very simple answer for you.

There are probably a hundred people who post today on this board who have been given time frames similar to yours, and that was many many years ago. Had my wife and I asked, we would have been given the same time frame...That was 2 years ago as of Oct. 13th and she and I were ice skating with Jack (our 4 yo) just last night.

It IS VERY possible to live with this. Best of luck to you.

[coni]

GRRRRRRRRR It makes me so darn mad when Doctor's say how long a person has...

I had cancer (not lung) 32 years ago and was told wayyyyy back then I only had 4 weeks to live, then had cancer again 5 years ago and was given only 3 years. With my hubby we don't ask and we wont let them tell us how long he has....so PLEASE don't let it get to you..they have no clue how you will do with treatments........My thoughts and prayers are with you.

[Muriel]

Hi Jeanette,

Welcome to our group. I think you will find lots of information, hints, tips, and support here. Forget the statistics - they're averages and you're an individual.

I've been going to MDAnderson-Orlando for about a year and a half. I had already seen two other Oncs. in Orlando and one in Fairfax, VA (before we moved to FL). MDAnderson, it's doctors, nurses, facilities, receptionists, everyone there in fact provided the best of my experiences. I haven't had chemo, radiation, or surgery there - I had done all of that before we moved. Judy in Key West and I see the same oncologist (Dr. Tseng). I think she's wonderful.

When is your appt. at MDAnderson? I hope all goes well and that you're happy that you got a second opinion. In your situation, I certainly would have done so.

Muriel

[jaminkw]

Welcome Jeanette. I guess I'm the poster child for MD Anderson. My cancer (IIIB, IVa in the new staging system) was dx'd Oct 07, my first chemo Nov 6. By April 1 I was, and still am, in remission.

The staff at MDACC never talked in terms of time remaining. Why my onc did say is "it's not cureable but it's manageable." I've learned that is a common outcome of even advanced cancers today.

The only negative thing I have to say about MDACC is that it seems to be going through some growing pains recently. Nothing major but screw ups in scheduling etc. They have so many new patients, they are opening more chemo rooms on another floor.

I wish you all the best. Do keep us informed about the outcome of your second opinion. Like Muriel, I'd be interested to know when it is.

Good luck, Judy in Key West

[Donna G]

Welcome to the board. I think it is great that you are going for second opinions. some people are even operable after the brain mets are taken care of. Sounds like you are saying there is only one lung tumor, that sounds good too. Please keep us posted. It is possible to beat this disease!

Donna G

[Bruce u]

Hello Jeanette. Welcome to this great site. I am sure you will receive great support here. Members are also very knowledgeable and will provide alot of information on your questions.

[Wendy]

Welcome!

I ditto those that replied above me - no one knows how much time we have and second opinions are important too.

That being said, I have been stage IV for 2 years 9 months. Today I went to lunch, went to dinner, shopped and read with my granddaughter. I am still living strong!

Good luck and let us know how things are going for you.

Wendy - 4 yrs 6 month survivor

[Flyman35]

Hi Jeanette. Welcome to the family. Sorry you have need to be here. You will find this board very suportive and informative. As the others have said, statistics mean nothing here. So many have way passed up their expiration dates.

Best of luck to you.

Denise

[Judy-OK]

Hi Jeanette. I can not add much to what has already be sid above. Just wanted to welcome you from one small town Okie to another. Judy

[SandraL]

Hi Jeanette and welcome. So sorry you had to find this board but I am sure you have already found that there are kind caring knowledgable people here who are in the same boat. Don't ever listen to the statistics as you are not a statistic. It is good to hear that your treatment has been successful to date and I hope that continues for you.

Sandra

[Connie B]

Hello Jeanette,

I was just looking over some of the messages from our new members and I noticed you hadn't checked back in with us. I hope your doing okay, and I hope you'll let us know how your doing. We tend to take a special interest in our fellow lung cancer survivors.

I also wish to share with you the Richard Bloch from H & R Bloch had 6 months to live. He lived 23 years and did NOT die from cancer.

[jeanetteb918]

Thank you all for the wonderful responses when I did the initial post! What a great group of people!

Dr. at MD Anderson confirmed treatment plan but wants to extend chemo (Gemcitabine and Cisplatin) from 3 mo to 6 mo. Had port installed Tuesday and first treatmemt on Thursday. Friday was great but today quite a bit slower.

Had cold and one ear will not unplug--driving me crazy!

Where should I post for on-going correspondence?

Also, sent local tv stations some stats on the uneven funding among differeent types of cancer--especially lung cancer! When was the last time you say a major appeal in a magazine for lung cancer?!?!?

Thanks again!

Jeanette

[Connie B]

Hey Jeanette, Wow that was quick, and how nice to hear from you.

You can post in the LC SURVIVORS FORUM, or the NSCLC FORUM or the GENERAL FORUM. Most everyone here read all the forums. So where ever you feel comfy.

This is Lung Cancer Awareness Month, but sadly enough you wouldn't know it. They don't advertise like other cancers do. But, I won't go into that, we all get pretty disgusted with how lung cancer gets passed over.

I'm very glad you came back and I hope you'll stick around and get to know us, and let us know you better.

I'm also glad to hear your doing chemo. It's a HELL of a battle, but it's DOABLE and this disease is treatable. Sorry to hear about your ear. Maybe something warm on it would unplug it? Might need to talk to your doc about it.

[SandraL]

Hi Jeanette. Thanks for checking in with your update. Good to hear you have started your treatment plan. It can be a tough haul, but as Connie says, it is doable. Be sure to drink plenty of fluids, that will help you get through it with less side effects. Even if you don't feel like eating, remember to drink.

Yes, I too was shocked at the lack of empathy and funding for lung cancer. Good for you for trying to spread the word. I have done some advocacy work myself. If we are healthy enough to do so, I figure we should all try and do something and give real people's stories and faces to this horrible disease. Because if we don't, I am hard pressed to think of who will.

Best wishes with your treatment plan. I hope it puts your cancer in full retreat mode. Take it a day at a time and look after yourself.

Sandra

[recce101]

Hi, Jeanette, thanks for checking in with an update. I among many others have been wondering how you're doing.

As Connie said, there are several places you can post, and it doesn't make much difference for general comments and questions about your treatments. We do have a special forum for test results (Test Time / Updates), and there's the Just for Fun / Off Topics forum which sees a lot of activity. One thing I'd suggest is that whenever you have a new question for the group that you want the max number of people to see, start a new topic thread for that question instead of sticking it at the bottom of some other thread (some will miss it if they've already read or responded to the first message in the thread).

I didn't have the same chemo combination as you're getting, but I think most regimens have a similar fatigue pattern — feel fine for a day or so after the treatment, partly because the premed steroids are still active, then rather tired for 2-3-4 days, then the energy starts to return. Aloha,

Ned

[jaminkw]

Jeanette,

Glad you checked back in. I had mild nauseau for several days beginning about the fourth day after my chemo. But without doubt, fatigue has been my worst side effect throughout my treatment.

Glad you got to MDACC. Houston or Florida? You said they suggested a change in your chemo treatment plan. Are you doing it at MDACC or taking that info back to your original treatment center or hospital?

All the best of luck. Keep us posted on how it goes.

Judy in Key West

[MsC1210]

((((Jeanette))))

So good to hear from you and I am so glad you did go with the second opinion!

Please keep us posted and let us know how we can help you as you continue this journey. We are here for you!!

I want to say THANK YOU for taking the time to correspond with the local media there. It is so important that we continue to do our part in keeping lung cancer in the spotlight however we can!

Continued good wishes for you and your daughter...

Hugs

Christine