Stage 4 Non-small Cell Lung Cancer

Echeveria

The cancer has spread.

My grandma had stage one breast cancer, surgery, then it turned into stage one lung cancer, chemotherapy, and now she has stage 4 lung cancer in lymph nodes, her spine, and other bones. I acted as her caregiver last round, so I attended all her treatments and appointmetns in the past. This time she had an MRI, a PET scan, and fluid drained from a lung. I suspect the life expectancy is no more than mere months as she is 75 years old and declining in energy suddenly and very quickly. Her shortness of breath and weakness are equivalent to when she was undergoing chemotherapy and she hasn't even started yet. She'll start chemo and immunotherapathy this week, but she's already nauseated often and can't drive anymore when she was fairly active just weeks ago. Her hair thinned before and grew back, but I don't think she'll keep any hair this time. Does anyone have a similar experience or reccomendations for easing symptoms? She is considering medical merijuana for the severe nausea that she remembers from stage one. And she'll be seeing about a power of attourney for a living will. As for the actual chemo I don't know how to make any of this easier for her. Everyone seems to have tragic stories here, but encouragement, even if realistic advice for expectations, is appreciated. What would make the process more smooth other than looking into additional support with a cancer social worker?

jorola

Here's some tips I hope will help her

Some things hubby and I learned when he was in treatment:

• Dress in layers or even take a light blanket. Those places are usually cooler and the treatment can make you fell cold sometimes. It would suck to be there freezing.
• Take some snacks and drinks (water). Depending on the treatment and day you can be there a long time. You may get hungry and then it is good to have something if you do get nauseous.
• Along that line, take something to do. Besides napping all there is not a lot to do. Depending on your chemo neighbour you can have some great conversations but that does not always happen.
• Make sure you have rides to your treatments, at least until you know how it affects you. The drugs Mick got (etoposide and cisplatin) made him kinda drunk - funny, weird and annoying all at the same time LOL. He would not have been able to safely drive afterwards as he was truly impaired.
• Drink LOTS of water. Dehydration is your enemy. It also help to help the chemo flushed around your system better.

I know you may have read some sad stories on here but not all end up that way. Especially with immunotherapy. This treatment has really changed things for people with lung cancer, specially stage four. It can give some people years and even helped a few people become cancer free. My husband was given 8 months to live when he was diagnosed. Although he was not given immunotherapy but had chemo and radiation, he was declared cancer free instead 8 months later. That was 5 years ago and he is still cancer free. If marijuana helps her then so be it. I would go with edibles though as smoking it would only irritate her lungs.

All the best to her and you.

Salmanfray

From My Experience

Hi and thank you for sharing your story.  I am a 56 year old male diagnosed in Nov. 2018 with stage 4 lumg cancer and had to undergo spinal fusion surgery for where a tumor metastized in my neck and shoulder area.  I, like your grandmother, am undergoing immunotherapy [Kitruda] and chemo [Pemetrexed].  For someone who gets nauseaus at the mere sight of things normally, i have to say that i have been nauseaus free since being on this combined treatment.  I do believe the immune has a way of supporting the system in such a way that has made a difference.  I am hopeful your grandmother has the same experience.  She sounds like a strong woman, and i would remain hopeful that the treatement for stage 4 will be less invasive on her.  Also if you haven’t tried, I have found plain bland oatmeal with a few fresh berries thrown in is magical.  it is so tasteless that you experience none of the nauseating feelings from richer foods.  

Salmanfray

jorola said:

Here's some tips I hope will help her

Some things hubby and I learned when he was in treatment:

• Dress in layers or even take a light blanket. Those places are usually cooler and the treatment can make you fell cold sometimes. It would suck to be there freezing.
• Take some snacks and drinks (water). Depending on the treatment and day you can be there a long time. You may get hungry and then it is good to have something if you do get nauseous.
• Along that line, take something to do. Besides napping all there is not a lot to do. Depending on your chemo neighbour you can have some great conversations but that does not always happen.
• Make sure you have rides to your treatments, at least until you know how it affects you. The drugs Mick got (etoposide and cisplatin) made him kinda drunk - funny, weird and annoying all at the same time LOL. He would not have been able to safely drive afterwards as he was truly impaired.
• Drink LOTS of water. Dehydration is your enemy. It also help to help the chemo flushed around your system better.

I know you may have read some sad stories on here but not all end up that way. Especially with immunotherapy. This treatment has really changed things for people with lung cancer, specially stage four. It can give some people years and even helped a few people become cancer free. My husband was given 8 months to live when he was diagnosed. Although he was not given immunotherapy but had chemo and radiation, he was declared cancer free instead 8 months later. That was 5 years ago and he is still cancer free. If marijuana helps her then so be it. I would go with edibles though as smoking it would only irritate her lungs.

All the best to her and you.

Thank you Jorola

your post is terrific and hopeful. Many thanks for posting it.  Hope often gets lost with this illness and it is wonderful to read positive stories like this...

Echeveria

Thanks everyone!

Thank you for the encouragement jorola and Salmanfray. She is definitely doing better than I expected. I think the initial panic and fatigue of not being able to breathe had her spirits declining faster than we have ever seen since an emergency room visit for draining fluid by her lung was the way we discovered the cancer was back. But she improved once treatment and appointments were made. She went in to the emergency room for draining the fluid again and was kept overnight to watch her oxygen levels. This was just before chemo day, so her bloodwork went in late and she was approved for two chemo drugs including Pemetrexed, but not the Keytruda. She'll get that next round in three weeks. The nausea meds Dexemethasone and Ondansetron are helping, they have her taking folic acid and gave her a B12 shot five days before chemo. She has a port in her chest from the previous treatments, so she's used to a lot of the procedures, we're both used to the appointments and waiting, and are getting more savvy about what to ask for right away, like warm blankets, face masks for smells, extra snacks, and water whenever possible. Does anyone else relate to the extreme senstivity to smell with lung cancer? It's any time she meets up with someone, even nurses and they have a strong hair product or even mild soap, sometimes perfume but even more subtle smells. I'm thinking of ordering her special face masks.

As for food, she is somehow managing to make eggs despite sensitivity to smell. Whole foods and less or no sugar was recommended, so she's watching even her fruit intake. Quinoa and chia seeds are new for her. But many things cannot be made anymore due to smell or someone has to cook it off site. You've been very kind and any additional food advise is appreciated. 

Jorola, hopefully you and your husband are still doing well. And Salmanfray, I hope you feel fully recovered from your surgery and continue to be nausea free.

Bubbie7

You are an wonderful grandsonHatevr

im a grandma who is facing a new cancer, with lung and or esophagus probably. Im feeling very anxious and so far I don’t have a diagnosis. Waiting for tests, but I have symptoms and my mom died of lung cancer that spread to her bones 40 years ago. My hope is that medicine is much better today, but I have already started marijuana. I started having pain in my arm and back and was hoping it was a rotator cuff problem but they found a lesion in my arm and now I’m prepared to go through more tests. I’ve been a caregiver for my husband who has dimentia and for the past year or so, I have pr neglected myself.  I am a little younger than your Grandma but I wish her well. Whatever she needs, she should get, and you sound like a loving grandson. God bless you both. Susan

jorola

Way to go Gramma! And what a sweet grandkid!

I love hearing back from people. Gramma certainly has spunk and good on her! Yes it takes a bit to get a rhythm and rountine, but eventually you figure it out. Seems you both are well on your way.

As an FYI - http://chemocare.com/chemotherapy/drug-info/PEMETREXED.aspx

That is just info on that chemo. Looks like a good one with little to no side effects.

Please continue to keep us updated ok?

Mick has his final appointment with his oncologist Aug 20 - if he is still all clear he gets discharged from care! Exciting yet scary at the same time. Thank you for asking and your kind wishes.

Hugs,

Jodie

leonardito

My Experience with stage 4 Lung Cancer

Hi .  I am a 83 year old male diagnosed in May. 2019 with stage 4 lumg cancer and had to undergo many  tests.

Summary of them are inclued on my web page:

  https://leonardito.com/famcleonarditon/familycleonardito.php

All the best to All.