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brsarah

My mother Diane

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Hello,

My mother Diane was diagnosed with NSCLC IIIB/IV with pleural effusion in chest and lungs, tumors in her lymph nodes and a tumor pressing against her heart and esphagus. It started as a cough back in January. She has been a realtor for years, self-employed single mother with no health insurance. I begged her to go to the walk in clinic to have her lungs checked becuase the cough was not going away. She went and they gave her some pills for congestion. I was relieved, thinking it was nothing but a cold. Then it didn't go away. She started to sleep late which is not like my mother. I moved out in May after I finished grad school and just one month ago she calls me to tell me shes feeling like shes having a nervous breakdown. She goes to a doctor, a physcian of general medicine. She has shortness of breath, extemely tired. He gives her xanax and an anti-depressant. She goes to him two more time complaining of shortness of breath. He changes the anti-depressant. She calls me at work and tells me she cannot make it up the stairs. The next call I get (an hour apart) she is in the ER and told there is a mass in her lungs, fluid around her heart, and chest and a collapsed lung. Something a simple chest x-ray could pick up. Now, I am one month into this. I slept in ICU at her bedside for over two weeks. I have sobbed, not eaten and literally found out what it feels like to have your heart break. This is my mother. I am a social worker, I worked in the very ICU where my mother is now a patient. I worked with families who were losing someone to awful medical situations and I know nothing about this process. She is now, on a regular floor. I was told that there are no options for her. That she should choose Hospice Care. I was told that she would have 2 months to live and that the Chemo would not do anything. My mother is fighting. She chose Chemo to the medical team's dismay. She is losing her hair. She cannot walk, she is weak and tired and I am so scared for her. Thank you for all posting your stories on this board. Its amazing how the world keeps spinning even when your own world seems to harshly stop.

Sarah

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Sarah-

I am so sorry for what you are going through. I hope the chemo helps buy your mom some time. If you read the stories here you know that there is a good chance your mom will prove the doctors wrong. Hang in there- I know this is hard.

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Dear Sarah,

I am sorry to hear of all you are going through. I don't know the whole story with your Mom, but I would advise you get a second opinion. My Mom was diagnosed in July with Stage IV - widely metatstic cancer (including 6 brain tumors). She is still receiving treatment. You can read all the detals below my name. I am relatively new to all this, but I would want a hard and fast explanation as to why they will not pursue treatment. And if you don't like the answer, keep looking.

Take care and good luck. Brandie

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Welcome Sarah. I am so very sorry about your mother's dx and subsequent prognosis. You don't mention where you are locarted and at what type of facility your mother is being treated. Many here would strongly offer the suggestion of another opinion before progressing any further. My thought is that lung cancer is nothing short of pure evil..........the way it just sneaks up on unsuspecting people. And the treatment of the medical folks offering xanax, etc. is quite a commont story here.

Gather your facts, take many deep breaths, seek out at least one other opinion, and stay with us here for the support and information you will need. In the meantime, I offer you much hope and best wishes to see you through.

Kasey

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HI and welcome Sarah,

I'm so very sorry about your Moms DX. It's important to understand that Doctors do not know all. If your Mom has chosen to fight this S.O.B then I like her chances! Attitude is everything. Miracles happen everyday. There are many long term stage IV survivors on this board. Read their stories to your Mom, they will help inspire both of you to fight!

Cancer is not a death sentence, numbers mean nothing and if you don't like what one Doctor is telling you or your Mom, move on and get a second or third opinion. There are MANY new options for treatment available, if one doesn't work, try others, try clinical trials, pray, research nutrition for cancer patients, research and read, knowledge is power!

With each day your Mom fights and is alive... New treatments and drugs are being approved and implemented for Lung Cancer.

My very best thoughts and prayers to you and your family.

Warmest Regards,

-Rod

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Sarah,

I'm so sorry to hear about your mom, but would like to say to you not to give up hope. I'm glad your mom wants to fight and is having chemo.

I was diagnosed almost 18 months ago with Stage IV and thankfully will get to see my daughter married this weekend.

I feel that where there is life, there is hope.

Joan

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I want to thank you all for such quick responses and wonderful support. I teared up with all the kindness. I just heard from the hospital and my mother had a blood transfusion and presently has a blood clot in her arm. All of it just seems so big. Like a monster. I'm just banking on having quality time with her. I'm literally taking it day by day. She wants to get a second opinion from Yale Cancer Center, so we have started that process. Presently she is too sick to leave the hospital. We have only had the opinions of the medical team there. Once again, thank you all for your kind words. Sarah

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Sarah,

I'm so sorry to hear of your mother's diagnosis. I believe that a second opinion is worthwhile and I especially believe in allowing the patient to decide when to discontinue treatment. Many of us have stage IV with wide metastisis and yet we are doing well.

Don't give up hope, but do cherish your time now.

Mary

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Sarah

I am so sorry about your mom's diagnosis. I am glad you are looking into a 2nd opinion and I pray that there will be a good course of treatment for her.

Please remember to take care of yourself in all of this. It is so easy to get run down trying to cope with all of this.

Keep posting and let us know how we can help.

Sending prayers for you and your mom,

Chris

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Hi Sarah,

Can't add anything to the wonderful advice you've gotten so far but do want to add my prayers for you and your mom.

I know how painful and difficult this is but hang in there.

Please know we are here to support you in anyway that we can.

Hugs,

Libby

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If your Mom wants to fight find a doctor who will fight not give up per say. ther are a lot of things going on right now and an aggressive treatment would probably be in order, But if she is in fighting spirits, Get a 2nd opinion and 3rd if need be. Sending prayers. Keep us posted.

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Sarah,

I am sorry to her about your mom. There is no cancer that can not be treated. You need to get a second opinion and find a doctor that believes that he can help. Fifteen months ago I was diagnosed with stage IV lung cancer with a pleural effusion. I was told that there was no cure, but after 3 months of chemo I was cancer free and have been cancer free since November 2005. There is always hope. Ask about Tarceva. If there is a problem with money contact the manufacture of whatever drug they suggest. Many of us will be praying for you and your mom.

Stay positive,

Ernie

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Sarah,

I'm sorry to hear about the situation with your mother. It sounds as though she wants to fight, that is a good sign. If you need any help or have questions about Yale let me know as that is where I am treated and the Thoracic Oncology program is excellent and the nurses and doctors are wonderful.

Your mother is in my prayers.

Lilly

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Sarah,

Sorry to hear about your mom's diagnosis. I too was diagnosed with Stage IV NSCLC with a malignant pleural effusion back in Dec. 2005. After 4 months of chemotherapy and 5 more months of targeted chemotherapy, I have just been told that my cancer is in remission! Do not listen to the statistics and do not give up hope! Get that second opinion and then strap yourself in for the ride. We are here to help you along the way. Glad to hear your mom is a fighter, attitude will take her far in her cancer journey. Hang in there and stay strong. I am praying for you and your mom.

God Bless,

Sharon

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Sarah,

Sorry to hear about your Mom's diagnosis. It just plain stinks, BUT there is hope for prolonged life WITH quality. I echo everyone's sentiments about different opinions. We were really blessed to have an oncologist who was very aggressive from the start. My husband Tony was also diagnosed with IIIb/IV NSCLC in March of 2005. Both of his lungs were completely loaded with cancer. A wedge section biopsy for confirmation, 20 cycles in a row of doublet chemo, a little radiation on the side and he is still crankin'. The cancer has never completely gone away, but it is being managed. He is now on what we like to call "chemo-lite", Tarceva (which is really a targeted therapy and not like the heavy duty chemo he had before.) AND the oncologist is still plotting several options for the future treatments. I am not saying this is going to be a picnic, but life with dignity and some quality can be sustained, even in the face of a disasterous diagnosis.

Hang in there -- sounds like your Mom is a fighter!

Good luck, keep us posted, and please include a bio for your signature line.

Welthy

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Sarah I am sorry to hear about your mom's diagnosis. Unfortunately many others have been initially misdiagnosed and then found out about their cancer after being checked into ER. I think there has got to be a better screening process for LC. I am glad your mom is seeking a second opinion and I hope she gets enough strength back to go there. Yale Cancer Center is a good comprehensive cancer center. I think any cancer is treatable as long as the patient has the strength and the will to undergo treatment. You and your mom have my best wishes.

Don M

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Hi Sarah,

Your mom is so lucky to have such a wonderful daughter at her side. Her wanting to fight is wonderful and should be encouraged. I do not believe in what doctors tell patients when it comes to stastictics.

You should seek out another opinion and see what they have to say.

Your mom is quite a fighter and I know that is because you are right there with her.

Keep us posted on her progress. We are always here for you 24/7 for support, prayers, knowledge or if you just want to vent. We have very broad shoulders here and can help you with that heavy load you are carrying.

Maryanne :wink:

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I, too, am so sorry for what you & your mom are going through. I am glad she has chosen to fight. I agree, a second, third, fourth, etc. opinion is perfectly in order.

Perhaps your mom's doctors would consider sending her records/reports, etc. to Mayo in Rochester. I believe they have a tumor board there that accepts outside inquiries from all over the country. Even if she is presently too ill to leave to hospital, they may be able to further advise her physicians of other treatment options, based on her records. Also, check out the R.A. Bloch Cancer site: http://www.blochcancer.org/ LOTS of hope, and solid information there.

In the meantime, we are here, rooting for your mom (and you :wink: ) Your mom is very lucky to have such a devoted advocate on her side.

(((((HEALING HUGS))))) and prayers for strength!

Yours in HOPE!

Stacey

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Just want to welcome you to our group.

My brother was critically ill when he showed up at the ER. He was intubated and in a coma for several days. I could not see any hope. The doctors wanted to give him chemo. I thought it was a waste of time and that the chemo would add to his suffering body. Just the opposite happened. He came out of the coma, was extubated and healed up enough from the pneumonia to start on some chemo. We had some very good quality time and experiences after he started treatment.

I like that your Mom is willing to go to lengths for her life.

Cindi o'h

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I am amazed and truly appreciative of all the support, prayers and hugs for my mom. I too send them out to all of you. I have a question re:appetite. I told my mother about this board and will print out all the comments and support received in order to lift her spirits and keep her hope strong. Presently, her appetite is very poor if not even present. Today she drank one boost and ate a little watermelon. I'm concerned about her strength. Have others experienced appetite loss? Presently she has had two rounds of chemo, 2.5 weeks apart. She was also told that a brain lesion was discovered. Her doctor told her not to be concerned about that now. Should she? I have to let you all know that I am so inspired by your stories and so grateful for your support. This is a painful, scary experience, but the support pours light into the darkness. Thank you, Sarah

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Sarah,

there is light. It might seem very dim at times and at others brilliantly bright, but it is there.

There ARE survivors of this disease and your mom wants to fight! As long as she wants to fight, she deserves the best medical options available.

I am praying that she can gain some strength to begin a treatment plan or move forward with second opinions and other medical facilities. Knowledge is power and knowing her dx., metastatic areas and ALL the treatment options available will help aid in making the best medical choices. It is her choice. Let her continue to dismay those doctors!! I have seen others make a turn around and those folks (some of whom will reply to your posts) are doing very well today.

There IS HOPE.

As for appetite, have they prescribed any appetite enhancers for her? My dad took MEGACE and it helped greatly, but it is known to cause blood clots, so that may be why they haven't prescribed it. There are other appetite enhancing prescriptions out there- sometimes, you have to be your own medical advocate and ask.

In the mean time, taking her up loads of her favorite foods might help- even if she takes a nibble off each, it all adds up.

You can do a search on appetite on this message board and get threads with loads of tips as well.

Please keep us posted ok? And give your mom a gentle hug from me.

Keeping you both in my prayers,

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