Denzie

Let me add that MD Anderson has support groups for patients and additional support groups for care givers. It's very empowering to sit with a group of people who know what it's like to hear the words, "You have cancer".

Having been part of both survivor and care giver groups I can assure you that we laugh more than we cry.

https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/support-groups.html


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He's lucky to have you as part of his care team. You seem to be an amazing advocate. I wish more patients had someone like you in their corner.

The manufacturers of the medications your uncle has been offered may have programs that help with payment.

When I was treated my chemo had to be postponed 2x because of my blood count. I waited an extra week and then wound up needing transfusions before we go go forward with treatment. That necessitated a couple extra visits to the hospital for blood tests and long days in the short stay unit while two units of blood were prepped and thawed.

Time spent researching payment assistance would be well worth the effort. Talk to the oncology social worker at your hospital. They should be willing to help with this.


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Welcome. You will meet many through Lungevity who experience the same EGFR mutation. They even have a Facebook group- private- for EGFR patients and survivors. You've landed onto one of the most supportive sights anywhere.

Buckeye-wife, are you still in Ohio? Lungevity will be sponsoring a Regional Hope Summit in Columbus. It's an educational and social event. Please consider joining us. I think it's in November. There will be more info on the website.



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Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



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I don't have experience with chemo (either as a caregiver or for myself), but I just had a lobectomy on July 10th.  The minimally-invasive techniques are FANTASTIC--I have three tiny incisions.  I probably would already be back at work but I had a minor complication of an air leak that caused my face/neck/chest to swell up and I had to go back in with a chest tube for a few days. THAT was tougher than the original surgery.  I would have been fine just having my neighbors look in on me if it weren't for the re-admission, but by the time I got out the second time, I was VERY happy to have my cousin offer to come out and take care of me for a few days.  She just drove me on errands/appointments till I was cleared to drive (which was as soon as the chest tube was removed), and helped with some housework and kept me company.  I was going a little stir-crazy by then.  
If your mom is putting on the game face, roll with that.  The one thing that stresses me out is seeing the furrowed-brow, worried faces.  I'm grateful my family and friends have followed my lead.  It IS scary, for sure, but it sounds like your mom copes with things the way I do.  So to the extent you can support that positive attitude, you will be helping her.  

Hi Katherine,

I'm sorry to hear about your mom's diagnosis. I still remember the day that my dad told me about his. As soon he said the word tumor, I started balling and everything else was a blur after. Things started rolling pretty fast after that. Surgery, chemo, recovery....

After 2 years, we are still in this and like Tom and everyone else said, it is a marathon. So really, I know it sounds cliche, but take care of yourself. Both physically and mentally.

Your dad will of course have a lot to deal with as well being the primary caretaker so be sure to check in with him often.

As far as making things easier on your mom, just try to be there and help as much as possible. Also, it's important to help her feel a sense of normalcy. If she enjoys making dinner for the family, ask her to make it if she's up for it.

As much as they say they are strong and they've got this? They are human too so they will have good and bad days. And so will you. Take it one day at a time. Get support. Talk to friends.

Your lives will prob never be 100% "normal" again but could be pretty darn close on good days!

Hang in there!


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Katherine, 
When I was reading the beginning of your post, I thought it was me talking. I feel the same way about my mother as you do. My mom is on her 2nd diagnosis of lung cancer, the 1st being in 2015. My mom had a lobotomy in January 2015 and then followed up with chemo and radiation because the tumor was more involved than the surgeon realized. My mom did great after her surgery and during treatment and she is NOT the epitome of good health to begin with. So if my mom can make it thru, so can yours. One thing that has really helped me with this cancer recurrence is these forums. There are several members who have provided great insight for me. Everyone on these forums are survivors, whether we are fighting ourselves or fighting for a loved one. There is also great information here that can help educate you in your mom's current health issue. Arm yourself with knowledge. Don't pay attention to the statistics,your mom is not a statistic. As Tom says, if one person can survive, so can your mom. Moms are fighters. 
Do know I feel your pain, you are not alone. I am currently crying by myself too. We are here for you. Take care, keep your chin up. Be strong. Once y'all have a definite treatment plan in place, things will get easier.

At stage 3, depending on the location and Tumor properties, they will treat the patient with curative intent.

Please know that it's alright to be frightened for your mom. Own your feelings, that makes them easier to deal with. Your mom is your mom and I bet she's able to read the fear in you. It's okay to let her know that you are afraid but that you will take strength from knowing that she is dealing with this so well.

Contact the oncology social worker at her hospital. Inquire about support groups for family and friends. My experience in family support groups and now in patient support groups is that there is more laughter than tears and you learn how to help her enjoy good quality of life.

Learn the signs of dehydration (confusion, stumbling, dizziness blurred vision, skin that stays tented when gently pinched. Pulmonary embolisms and pleural effusion may or may not cause sharp pain accompanied by shortness of breath and faster heartbeat. The pain may be referred-it doesn't have to be on the same side as the lung cancer. Watch for unusual swelling in her legs that might indicate blood clots that can break loose and cause heart attack, stroke or pulmonary embolism. If you see any of those symptoms call her dr immediately.

Get her up for short walks or swim. Exercise is important. Calories are more important than balanced diet during treatment. Make smoothies or milk shakes with ensure or boost to get the nutrition she needs.

Hope this helps.


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At stage 3, depending on the location and Tumor properties, they will treat the patient with curative intent.

Please know that it's alright to be frightened for your mom. Own your feelings, that makes them easier to deal with. Your mom is your mom and I bet she's able to read the fear in you. It's okay to let her know that you are afraid but that you will take strength from knowing that she is dealing with this so well.

Contact the oncology social worker at her hospital. Inquire about support groups for family and friends. My experience in family support groups and now in patient support groups is that there is more laughter than tears and you learn how to help her enjoy good quality of life.

Learn the signs of dehydration (confusion, stumbling, dizziness blurred vision, skin that stays tented when gently pinched. Pulmonary embolisms and pleural effusion may or may not cause sharp pain accompanied by shortness of breath and faster heartbeat. The pain may be referred-it doesn't have to be on the same side as the lung cancer. Watch for unusual swelling in her legs that might indicate blood clots that can break loose and cause heart attack, stroke or pulmonary embolism. If you see any of those symptoms call her dr immediately.

Get her up for short walks or swim. Exercise is important. Calories are more important than balanced diet during treatment. Make smoothies or milk shakes with ensure or boost to get the nutrition she needs.

Hope this helps.


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Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



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This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


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Let me add that MD Anderson has support groups for patients and additional support groups for care givers. It's very empowering to sit with a group of people who know what it's like to hear the words, "You have cancer".

Having been part of both survivor and care giver groups I can assure you that we laugh more than we cry.

https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/support-groups.html


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Let me add that MD Anderson has support groups for patients and additional support groups for care givers. It's very empowering to sit with a group of people who know what it's like to hear the words, "You have cancer".

Having been part of both survivor and care giver groups I can assure you that we laugh more than we cry.

https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/support-groups.html


Sent from my iPhone using Tapatalk

Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



Sent from my iPhone using Tapatalk

He's lucky to have you as part of his care team. You seem to be an amazing advocate. I wish more patients had someone like you in their corner.

The manufacturers of the medications your uncle has been offered may have programs that help with payment.

When I was treated my chemo had to be postponed 2x because of my blood count. I waited an extra week and then wound up needing transfusions before we go go forward with treatment. That necessitated a couple extra visits to the hospital for blood tests and long days in the short stay unit while two units of blood were prepped and thawed.

Time spent researching payment assistance would be well worth the effort. Talk to the oncology social worker at your hospital. They should be willing to help with this.


Sent from my iPhone using Tapatalk

Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



Sent from my iPhone using Tapatalk

He's lucky to have you as part of his care team. You seem to be an amazing advocate. I wish more patients had someone like you in their corner.

The manufacturers of the medications your uncle has been offered may have programs that help with payment.

When I was treated my chemo had to be postponed 2x because of my blood count. I waited an extra week and then wound up needing transfusions before we go go forward with treatment. That necessitated a couple extra visits to the hospital for blood tests and long days in the short stay unit while two units of blood were prepped and thawed.

Time spent researching payment assistance would be well worth the effort. Talk to the oncology social worker at your hospital. They should be willing to help with this.


Sent from my iPhone using Tapatalk

Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



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My friends husband was diagnosed at age 65. He lived for 7.5 years after chemo, radiation and PCI (prophylactic cranial irradiation). He died of causes not related to his cancer or treatment.


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My friends husband was diagnosed at age 65. He lived for 7.5 years after chemo, radiation and PCI (prophylactic cranial irradiation). He died of causes not related to his cancer or treatment.


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Welcome. You will meet many through Lungevity who experience the same EGFR mutation. They even have a Facebook group- private- for EGFR patients and survivors. You've landed onto one of the most supportive sights anywhere.

Buckeye-wife, are you still in Ohio? Lungevity will be sponsoring a Regional Hope Summit in Columbus. It's an educational and social event. Please consider joining us. I think it's in November. There will be more info on the website.



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This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


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This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


Sent from my iPhone using Tapatalk

This is something you should call the dr about. He will be given steroids as part of the side effects management and this is something he can't do without. It may take a few infusions before they have an adverse effect but don't chance it. Your dr would rather hear from you before it becomes a problem.

Do ask for a referral for an evaluation with the oncology nutritionist.

Concurrent chemo and radiation can be quite debilitating and if the amount of time off you're going to have to take is an issue for you, he will need you more then.


Sent from my iPhone using Tapatalk

You might consider sleeping in a reclining chair the first few days. That will support your ribs and rib expansion better. Tuck those pillows in & around for some extra support. Also easier to get out of than a bed. Have one pillow to hug incase you cough or sneeze.

You will be given an incentive spirometer to help prevent anesthesia induced pneumonia and to strengthen the lungs. Use it religiously.


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