Log in or Register to participate in these discussions

My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by TanyaLynn on May 28, 2019 4:14 pm

Hi everyone, 

My mom was diagnosed with Stage 4 NSCLC with mets to both her brain (very small amount) and bones. She has undergone 6 chemo treatments of Alimta and Carboplatin. She has also had radiation therapy done on the spot on her brain. 

Last week (May 23rd) we got the results of her post chemo scans and there was no change in the cancer. Thankfully it didn't grow, but it didn't shrink either. She is now going on maintenance therapy.

She has no energy left, her appetite is low, she is in pain in her chest, she coughs a lot. She is only 63yrs old. I know that the chances of a cure are slim to none. She doesn't want to know her prognosis, therefore I don't know what her prognosis is. I just want someone to tell me what to expect, because I am terrified every day that I am going to get THE CALL and she'll be gone.

Can anyone tell me what their experiences have been with loved ones that have gone through this? 

Thank you.

 

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Lianne_adminCCS on May 28, 2019 6:15 pm

Hello TanyaLynn‍ 

I am sorry for the reason that brings you here but I welcome you just the same. I am sure it must be difficult to find that the tumours had not shrank after her treatment. When you say maintenance therapy what are you referring to? Has Keytruda been mentioned as an option at all?
I am including some discussions that are on the site. The first one does discuss Keytruda but there is other info in there that might be helpful. I am tagging Afsi‍ who's uncle was diagnosed with Stage IV NSCLC to see if they can offer any insight to you.

https://cancerconnection.ca/discussions/viewtopic/68/59256?post_id=292362#p292362
https://cancerconnection.ca/groups/forums/viewtopic/82/12209/60755?post_id%20=%20289492#p289492



As far as a prognosis goes, it is not an exact science anyway.  Best to live the best she can when she feels well. Elizabeth06‍  is an excellent example of this and can definitely say it much more eloquently than I can.

We have a booklet Advanced Cancer that may provide you with some answers as well.

I am so glad you reached out here and trusted us with your mom's diagnosis. Do you have someone to lean on as well? You will need your own support system so don't hesitate to reach out to those around you

Take care

Lianne


 

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Elizabeth06 on May 28, 2019 7:59 pm

Hello TanyaLynn‍ 
I am so sorry to hear about your mom.  It is so difficult to watch someone we care about struggle with their health and all of the emotions that go with that decline.
i do not know anything about your moms type of cancer or the treatments involved, but I am living with stage four, or metastatic breast cancer.  
Does your mom have someone with her at her medical appointments or treatments?
is your dad in the picture?
your mom has the right to not want to know her prognosis.  Everyone has a different tolerance level for information about what is happening to their bodies and we should respect their wishes.  Having said that, would she give the doctors permission to talk to family members about what is going on? It would enable you to make sure there is proper care available and set expectations for the future.if that is not possible, or not inline with your moms wishes, could you talk to the hospital social worker to get advice on how to approach this?
you are looking for information with the best intentions and not having access to information is creating a lot of stress.
in the meantime, speaking as someone with a terminal illness, I am always grateful for time spent with my family.  People talk about bucket list items and I have been lucky to be able to travel, but, truthfully, small gatherings, meaningful conversations, feeling the presence of loved ones, is what matter most
Right now. Cancer is always present, but, life is so much better when we focus on living, not dying.
i hope your mom rebounds now that the chemo will be changing.  Generally, maintenance treatments are not as harsh, as the medical team attempts to keep the cancer stable and provide quality of life.  With improved energy and appetite, maybe some new experiences can be had.
Keep us posted on how you are doing.

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by WestCoastSailor on Jun 1, 2019 12:36 pm

TanyaLynn‍ 

I hear echoes of a conversation I had last week with my oldest son. I have metastatic NSCLC. I think it was harder for the Dr to tell me that the lesions in my lung were not responding to the latest immunotherapy than it was for me to hear it. I have been living with this diagnosis for a year now and the restaging was a little depressing. I was hopinig to be one of the "cured ones." That's not happening.

But back to my son, he is realizing that I'm not going to be around much longer and he depends on me more than he lets on. So we talked about the hard things. What will it be like when I die? What do I want that to be like?  To steal and then bastardize a line from Toy Story,  Woody is referring to Buzz Lightyear "That wasn't flying, That was falling with style."  For me - "That wasn't dying. That was living with style." We are all dying and some of us know a bit about what the end is going to look like and how soon it is going to come. It has a way of bringing life into incredibly sharp focus.

So we are trying to create memories. My mother died before he was born and I really didn't talk much about her when he was growing up. By the way I'm sixty and he is thirty eight. I"m trying to tell him about her while I can. And he shares his adventures - fishing last week in Prince Rupert - landing his first king salmon, his struggles at work, his successes and all the "normal things" that we do. He spent a year living with my Dad on a farm outside Love Saskatchewan and I"m hearing stories that I didn't know. Turns out that is all important stuff. Building relationships. Helping where I can.

So far I don't have bone and brain mets but that is probably coming. So far I'm able to be physically active and I have a good appetite. Though there are days when I have to tempt myself to eat. Looking over at my whole wheat waffle with yogurt and blackberry jam. Oh and two eggs and bacon...

When my wife died last winter of pancreatic cancer she didn't want to know her prognosis either. But she was fine with me knowing what was going to happen.  That came from a lifetime of trust that I won't spill the beans. And I have to say the first thing the doctor said "We always get it wrong" gave me a sense of his humanity and the fact that he was trying to paint a picture that is different for everyone. I have talked elsewhere on the forum on how that all happened and what a beautiful time it was together.

To sum up: Have the hard conversations, create memories, and enjoy this time that you have together.

Angus
My story: http://journey.anguspratt.ca

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Kims1961 on Jun 2, 2019 11:10 am

WestCoastSailor‍ 

Angus, sometimes a response is worthy of a big thank you!.  Your response here is so perfect and touching.  You have inspired me and your humility and "realness" is so helpful to others. 

With your permission, I am going to use your phrase:  "Have the hard conversations, create memories and enjoy the time you have together" . words to live by even if we don't have a terminal illness.  

Thank you, Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Sew On on Jun 2, 2019 1:04 pm

Angus. Such clear advice and wisdom for everyone to take to heart.  ThankYou.

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by WestCoastSailor on Jun 2, 2019 8:40 pm

Kims1961‍ and Sew On‍ 

Though that is my phrasing of it Atwal Gawandi in his book "Being Mortal" goes into this in great detail. It has shaped my thinking recently about this whole area.

Angus
My story: http://journey.anguspratt.ca

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by TanyaLynn on Jun 3, 2019 1:34 pm

Thank you everyone for your thoughtful responses.

Thank you Angus, your response resonates so deeply with me. I've decided to reduce my hours at work in order to spend more time with my mom so that we can "Have the hard conversations, create memories, and enjoy this time that you have together". I feel that it's the only course of action at this point. 

Good luck to you in your fight with cancer and I sincerely hope that you get to enjoy many, many, many more mornings with waffles, yogurt and blackberry jam.  <3

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Treepeo on Jun 7, 2019 12:15 am

Hi TanyaLynn‍ 

I think it's a great idea for you to reduce your hours at work to spend more time with your Mom.

My Mom had stomach cancer.  After surgery, they told us she would have about 6 months to live.  I always made sure I lived relatively close to my parents because I was so close to both of them.  So even though I used to see them regularly, I stepped it up to make the most of the time we had left together.  I lost my Mom in 1999, and it gives me peace of mind to know that I was there for her in her final days.  We had the hard conversations we needed to.  They gave me Power of Attorney in case it was needed.  And we also reviewed their Will to make sure it was in order.  They had some concerns about certain family members trying to contest it, but luckily I work at a law firm and I assured them that they would have no worries in that regard as I would make sure their wishes were followed to a tea.  Discussions like that were really important to both my parents, so I was honoured to be able to help them in that regard.

This is going to be a difficult time for all of you, TanyaLynn, but I hope that you will have moments when you can relax and laugh about stuff.  Make note of humorous things that happen at work or on your travels, or things you hear on the news.  Like they say, laughter is the best medicine.  And try to make time for yourself as well.  You need to be healthy in order to be of help to others.  So make sure you go out with your friends, or just sink into a good book or listen to music.  Anything that will lift your own spirits.  Remember, you matter too.

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Sharon F on Jun 20, 2019 6:39 pm

Marty has no energy, won't eat or drink, pain in his back, he doesn't cough, he's 65. Pain killers have reeked havoc with his bowels. Sorry for nothing more positive .

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by TanyaLynn on Oct 18, 2019 11:46 am

Hi everyone, 

I just want to say thank you to those of you that responded to my post to offer your thoughts and advice.

My mom passed away on July 4th. 

It's been a rough few months and I miss her terribly.

Tanya

Re: My Mom has Stage 4 NSCLC with Mets to Brain and Bones.

Posted by Lianne_adminCCS on Oct 18, 2019 12:00 pm

TanyaLynn‍ 

I am so very sorry to hear of the loss of your mom.  I am glad you came here where hopefully you will feel the support and the collective hug of this community.
I can only imagine how rough it has been and how difficult it is navigating your grief.
If you haven't seen it, we have a discussion group called Coping with grief you may find helpful as well as an excellent online resource http://www.mygrief.ca/

Please let us know if/how we can help support you through this very challenging time

Hugs

Lianne