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Anna K

Worried about my Dad

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Hi everyone, 

I was not planning on posting on here but I'm not sure what else to do. My 52 year old dad was diagnosed with stage 4 lung cancer this past month and at diagnoses we learned it already spread to his bones and brain as well as both lungs and lymph nodes. 

Im stuck between trying to find hope but also wanting to be realistic. 

We learned he is positive for the EGFR mutation, which to my understanding is great. He started on Tagrisso and was only on it for a week when his vision started to go bad and he was constantly dizzy. The doctor decided it was best to stop the chemo pill and immediately switch to WBRT. He has had 3 of his 10 radiation treatments so far. He's still dizzy, still has vision problems and is getting VERY weak and tired. Like, gets winded walking around the house and sleeps most of the time. He's lost alot of his voice, and has trouble swallowing, but still eats alot it just takes him a while. But besides this, he has no other symptoms. 

This is really scarying us. Is this weakness common during treatment? Is there hope he can bounce back? I've read alot of stories of people surviving for a while with this nasty cancer even when its caught late, and I REALLY want my dad to be one of those stories. Will WBRT even help him at all? I just want him back on tagrisso asap as I know this drug can really help. 

I guess im just looking for some reasurrance, or maybe a reality check. Whichever one seems most fitting. 

Thankyou in advanced for any responses. 

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Anna,

Welcome here. So very sorry to learn of your father's diagnosis.

Will WBRT help? Yes. It will kill tumors but the side effects you report are typical. 

Did you father's doctor stop Tagrisso because of vision and dizziness side effects, or did he stop it because he was concerned that brain mets were causing those symptoms? If the latter, then he'll likely return to Tagrisso after the brain mets are fried by WBRT.

I won't soft pedal brain mets. They are serious business. WBRT can eliminate them but side effects (vision, imbalance, and fatigue) may last for a significant time after treatment.

Stay the course.

Tom

 

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Hi Tom, 

I appreciate the response. The doc stopped tagrisso and switched to WBRT because he suspects dizziness is being caused by the multiple brain tumours my dad has. So I do hope you're right that he can return to tagrisso once done with WBRT. Im glad to hear you say his extreme fatigue is not abnormal. His dizziness has not improved at all yet, but he has only had 3 radiation treatments so far, and I'm assuming it will take time to kick in. This is all so new to us! Trying to stay strong and learn info for my mom and dad as they are both really struggling emotionally. 

Thankyou again!

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Anna,

I suspected your dad's doc decided to tackle the brain mets with WBRT when dizziness and vision problems set in.

Ok, you are new at this.  My best advice: read into your dad's disease.  This is a good place to start.

Here is an assemblage of lessons learned from my lung cancer experience. And faith and hope  count!

Stay the course.

Tom

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Thankyou Tom!! I appreciate it. I just hope there is some hope yet for my dad. I feel there is, but i dont want to be unrealistic.

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Hi Anna, 

I wanted to drop in and say hello from another mutant.  I have ALK which is similar to EGFR.  You ask if there is hope.  Yes, there is always hope.  If you haven't already seen the inspiring book by Diana Lindsay, "Something More Than Hope", I'd encourage you to purchase a copy.  Diana is a 14 year Stage IV EGFR survivor who had brain mets, pioneered some of the targeted radiation.  There is life after WBRT, people can and do bounce back with Tagrisso.  In my support group, there are several EGFR members who had life threatening conditions who are now kicking butt in yoga class.  Take this process one day at a time.  Be sure your Dad reports everything to his doctor, this is a new way to be a patient where we are not complaining but informing the doctor.  They want to know everything, right down to a case of the regular old sniffles.   I'd also encourage your Dad to look at some of the holistic practices such as acupuncture and Tai Chi.  Tai Chi is amazing for breathing, relaxation and balance.  It can be done sitting down in a chair.  The Chinese practices are under represented here in the US.  Many services are free or low cost to cancer patients.  Ask his social worker about resources.   Nutrition will also be key, as discussed in Anti Cancer Living by Lorenzo Cohen PHD, 

Please keep us posted and ask any questions.  We're rooting for your Dad and you! 

Michelle 

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There is always hope Anna!  Prayers and hugs sent your way as you and your folks go through this difficult journey.  Take care now.  Susan Rae

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Hi Anna,

I am happy to hear that your parents have you to do their research for them...that was my job too when my mom was diagnosed with Stage 3a non-small cell lung cancer.  As you have seen so far, you and your family are on a roller coaster ride through the diagnosis and treatment of lung cancer.  Rest assured, there is light at the end of the tunnel.  During my mom's 2nd bout with lung cancer, there were times that it seemed there was no hope, but she persevered.  With your dad's EGFR diagnosis, he has many more effective treatments now than just a couple of years ago.  Advanced stage lung cancer diagnoses no longer needs to be a death sentence thanks to great advancements in treatment.  But unfortunately, many of the treatments come with side effects, as you are seeing with your dad.  It's never easy to see your parent struggle with their health, especially when they go from fine to very sick in a short time. 

My best advice is to arm yourself with knowledge and reach out for help when you need it.  Be sure that your mom is taking care of herself as much as she can.  I am always told, as a caregiver/advocate, that I need to take care of myself...that I need to take a break, etc.  I never listened and did what I felt I needed to do to help my mom through the fight for her life - to me, that was what taking care of myself meant.  So, I am not going to tell you to take care of yourself/make sure you are taking time for yourself/etc/etc/etc...do what you need to do, arm yourself with knowledge, be the cheerleader when your parents are struggling emotionally.  Build memories with your family while you can (something we all need to do even when our parents are in good health).

Finally, you will get through this.  You may come out the other side with some scars, but that's a part of life.  Through the hell that my mom has gone through, we have many scars, but also have some great memories.  I hope you find this true for you and your family as well.  Please feel free to reach out to us whenever you need. We are here for you.

Take Care,

Steff

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Thankyou all for the encouragament and kind words. Tonight was rough with side effects for my dad, so I thought I would come on here and Im happy i did. I read your responses to my dad and it helped provide more hope. I believe he can get through this. I just need him to believe it too. Thankyou!

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