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Christine808

Dad initial diagnosis poor

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Hello All,

 

I received a call from my dad last Saturday.  He was distraught after visiting the local hospital for what he thought was Bronchitis, after the on call Doc looked at X-rays and MRI images he was informed that he had a large mass and fluid in one of his lungs and that he had six months to live.  This has been incredibly frustrating, I live in Hawaii and dad is in Oregon.  My sister arrived in Oregon to set up further consultations and schedule a biopsy.  It is incredible that with the kind of progress in treatment that a Physician could say a person has such a beak prognosis.  I am not delusional, I’m sure that this doctor knows his field.  But there are options and we are actively exploring them.  Dad will have his Biopsy this week and then we will have a better idea of what it is he is really facing. 

Like other caregivers, the feeling of helplessness and frustration is bubbling underneath everything all the time.  We have a supportive close-knit family and that is a great comfort.  For now my sister is taking the largest burden and for that I am so overwhelmingly appreciative.  I will be traveling to Oregon once treatment is recommended. 

Thanks for listening and I will keep up dating as we know more.

 

Aloha,

Christine

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I'm so sorry to read this post.  It saddens me when I hear about doctors who just blurt out such things!  There are many many people who have outlived the timeline given by their doctors.  My first thought when I hear these things is that the patient will simply "give up" and that is NOT an option.  I'm glad to know you have such a loving and supportive family.  That means a great deal when someone is dealing with this.  Please keep us updated on you and your dad ((hugs))

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Christine,

 

I'm a member of the six months to live diagnosis club and good Lord willing, on February 4th of next year, will have lived 12 years after diagnosis.

 

First step - get acquainted with the disease.  Start your reading here:  http://www.lungevity.org/about-lung-cancer/lung-cancer-101

 

There are two very important words missing from your description of your dad's cancer - stage and type.  The MRI should have been definitive enough to suggest a stage.  Perhaps your sister might have the information.  The type will be determined after the biopsy by the pathology investigation.  Normally, a type and stage are determined before physician suggests a prognosis.  They are necessary elements of information before a treatment means can be determined.

 

You'll have many questions and this is a good place to ask away.

 

Stay the course.

 

Tom 

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Michelle,

thanks for your words of comfort.  This is just the beginning of a long journey.

 

Tom,

I meant to mention that we really only can all agree that there is a mass in his right lung and any "prognosis" will have to come with understanding the kind and type of cancer he has.  Basically my sister told the doctor they saw yesterday that we want to start at the beginning.  He had a thoracentesis today and will have another tomorrow. Friday is a PET scan.  Things are moving in a better direction. 

Thanks for your words of hope I have been looking though the resources at the link you provided before posting.  I appreciate the wealth of knowledge shared here.

 

Aloha,

Christine

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Christine,

 

Yes - any cancer diagnosis is overwhelming.  Lung cancer results in a special form of overwhelming.  Still hoping the PET scan shows localized disease.  Let us know the results.

 

Stay the course.

 

Tom

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Christine I am so sorry.  It must be horrible to be so far away.  I am glad at least he had  images done that let them see that tumor.

 

So many go so long with symtoms of pneumonia but finally they find out it was Cancer and it has spread all over !

 

The biopsy will give more info .  Many people respond well to chemo or combined with Radiation.  Let us know what they find and

 

decide.  Best wishes.

 

Donna G

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Christine, 

It upsets me too when doctors just blurt out things like that. I personally have a good friend who is living well with stage 4 lung cancer, for well over 6 years now. I'm hoping his PET scan has good results. Please keep posting and letting us know what you find out, we will help as best as we can. 

 

Cindy

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This is the news form the oncologist.

Stage 4 Non-Small CellAdenocarcinoma  sub-type will be confirmed with further tests.

It has spread to bone – neck, back and lymph node. Lung is inoperable

They are doing another scan to look at his brain

Initial treatment suggested chemo + immune therapy working for as much longevity as he can.

They are looking at treating him in closer to home.  For now he is remaining in Oregon and has Navigator Nurse trying to expedite appointments.

Thanks for listening and all of your concern.

Christine

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Christine,

 

It goes without saying, this was not the news you wanted to receive.  That said, there is very promising news about immunotherapy emerging for certain types of non small cell lung cancer. I hope your dad's disease is within the immunotherapy treatment window. 

 

Chemotherapy close to home is a good choice.  Looking back on my chemotherapy experience, the small clinical setting for me was preferred over the large hospital treatment center.  First line treatment could be an 18 to 27 week cycle and the smaller setting allowed me to get to know the nurses and staff.  If your dad is experiencing difficulty with vein access, ask about the possibility of using a port.  Vein access for my first line treatment was a challenge.

 

There is hope.  Almost eleven years ago I had nothing but chemotherapy available to treat my disease.

 

Stay the course.

 

Tom 

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Tom,

 

Thanks again, your words of encouragement mean a great deal.  

I will be making a trip to see dad soon.  He is optimistic about the treatment suggested.  I will be sure to mention the port option.  I have, unfortunately, had a few friends and family members go through Chemotherapy and they utilized a port. 

 

I will keep you posted as he moves along.

 

Aloha,

Christine

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Christine,

 

I am encourage by your father's optimism about his treatment.  I've found attitude is so very important to my successful treatment outcome.

 

While there are not statistically relevant studies that relate patient attitude to survival, common sense suggests that people who cooperate and show interest in their treatment and outcomes are likely to fare better than those who don't.  Who knows?  If your father presents himself as an informed, interested and tractable patient, his medical professionals might be inspired to go an extra step to find a combination of therapies that lead to extended life.

 

Stay the course.

 

Tom 

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Hello again,

 

I have recently returned home from spending a much needed week with my dad.  I am struck by his hopefulness about his treatment.  He is most definitely not giving up.  He was honest about the fear that this diagnosis has brought but had determined that this is not the end while he can fight.  He is healthy and the Doctor is focusing on keeping him that way.  He is returning to Oregon next week to undergo a Biopsy they were not able to identify the genetic mutation after they do so his treatment regimen will begin. 

 

It was good to be there and prepare a hot cup of tea or rub his back and prepare a wholesome meal.  It was hard to leave but my family needs me here and I am confident in the family support we have for him.

 

Thanks for all your kind words and support it is a great comfort knowing you are here.

 

Aloha,

Chrisitne

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Glad you got to be with your Dad.  A positive attitude is very therapeutic also, so that's good news.

Let us know how that test goes to see if he has the genetic factor.  Best wishes.

 

Donna G

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Christine,

 

Wonderful that you were able to visit.  Families are so very important to fighting cancer.  Happy also about your dad's attitude.

 

Can your sister scan his test reports to you so you can stay connected to treatment and results?  Of primary interest is the radiology report on all his scans. Doctors will willingly share these reports with family members provided the patient (your dad) signs a HIPPA release.

 

Stay the course.

 

Tom

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This is Christine's sister. Today we received news it is metastasized in his brain. Therefore he can not be in the study group in Oregon. Good news however is that the mass in his lung and brain are both small. I am home right now in California. Exact size is unknown to me. (Step sister went to appointment with Dad). The recommendations from the oncologist is to get aggressive radiation and chemotherapy close to home. He has an appointment with a radiology oncologist in Oregon to inform him of what will happen. Both oncologists will refer Dad closer to his home. I also feel appreative to the Doctors in Oregon. They are walking us through each step and referring him to a colleague. Our nurse navigator is also handing us over. With the admonition that Dad is still "theirs" until the new hospital picks up. I also feel this is being handled quickly. I am forever grateful that they aren't just closing the door and sending us on our way.

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Migates,

 

Welcome here.  

 

It sounds like you've got all the pieces of your Dad's treatment plan nailed down.  Very happy that all the medical providers are cooperating and your nurse navigator is staying connected.

 

Here is some information that will read you into aspects of your Dad's radiation and chemotherapy - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options-for-lung-cancer 

 

Stay connected here and feel free to ask questions on this forum.

 

Stay the course.

 

Tom 

 

 

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Wow! In just 24 hours so much has happened. Dad has a consultation on Monday with Radiation to begin on Monday the 30th. My step sister already spoke to our new nurse navigator. I am breathing a sigh of relief knowing we truly aren't taking a step back moving to a new hospital and new doctors.

Marie

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Marie,

 

Conventional radiation comes in like a lamb and ends like a lion.  If a six week course of treatment (30 radiation treatments M-F), he may not feel anything the first 2 weeks.  Symptoms like fatigue and skin burning will appear in his 3rd week of treatment.  He'll need help getting to the last 2 weeks of treatment.  Radiation sucked the energy out of me the last 2 weeks of treatment.  Watch for his developing a dry, non productive cough and a sore throat.  If he gets these symptoms, have his radiation oncologist prescribe a blend of cough medicines we lovingly refer to as "magic mouthwash".  I lived on that and Halls lemon cough drops the last 2 weeks.

 

Let us know how he is getting on and don't hesitate to ask further questions.

 

Stay the course.

 

Tom

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Thank you all for the insightful and compassionate feed back.  I am moving this conversation over to the a more appropriate forum.  

Tom, Thank you for the great advice and encouragement.

Marie, welcome I love having your here.  Our family is the foundation to helping each other through this incredible journey.

 

Mahlao and Aloha~

 

Chrisitne

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Christine and Marie, 

Thank you for continuing to update us. I am so glad that you are getting some answers and feel better about your Dad's new treatment center. 

 

I look forward to continuing to get to know you,

Cindy

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Christine808 and Migates,

I am truly sorry to hear that your father has cancer. Glad to hear you have found supportive health professionals and they are moving quickly.

Even if you father cannot be part of a study due to the spread, there are some new immunotherapy options that have already been approved by the FDA, depending of course on the type of cancer and the specific DNA of same.

We lost my mother to NSCLC this month, distance of family was an issue for us too. I'm glad you have both been able to see and spend time with your father, to lend that support that I'm sure he appreciates right now.

Your father sounds like a fighter. I know that will help not just him, but you two also.

My thougts are with you.

Mary

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Tomorrow dad will start his second week of radiation. So far his only complaints are fatigue. I'm insisting he fill the "magic mouthwash" prescription to have it on hand. An ounce of prevention, right. I will be going up on Saturday for 5 days to help out as much as possible. He also has a consultation with chemotherapy tomorrow so we will find out all the details on that treatment.

He got scanned on Friday and they already see regression on some areas. Yay! His only other complaint is that he was smelling something funny and it tastes bad when he drinks water. Dr. Sarah told him it is ozone? So that's interesting.

Looking so forward to seeing him.

-Marie

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