Karen_L

I have a link to a document on how to be an effective advocate for yourself in this treatment process. The link is in my footer. Perhaps that would be of use. 
Best of luck. Go get ‘em!
Karen
 
 

I’m writing from Italy, where I’ve stolen a moment to check email before heading out. So this will be brief.
I’m absolutely horrified that your mother has experienced this. I urge you to get an appointment with a lung cancer specialist at the closest major cancer center you can get to. Do it NOW. 
I’ve found one that I think may be near you: UPMC Hillman Cancer Center, a National Cancer Institute-designated Comprehensive Cancer Center. Read more here and call them. NOW.  https://hillman.upmc.com/cancer-care/lung
Please keep us posted.
——
P.S. I wrote this before seeing Tom’s (more measured) response. I’m glad you have at least two options to consider. 
 
Karen

I have a link to a document on how to be an effective advocate for yourself in this treatment process. The link is in my footer. Perhaps that would be of use. 
Best of luck. Go get ‘em!
Karen
 
 

I’m writing from Italy, where I’ve stolen a moment to check email before heading out. So this will be brief.
I’m absolutely horrified that your mother has experienced this. I urge you to get an appointment with a lung cancer specialist at the closest major cancer center you can get to. Do it NOW. 
I’ve found one that I think may be near you: UPMC Hillman Cancer Center, a National Cancer Institute-designated Comprehensive Cancer Center. Read more here and call them. NOW.  https://hillman.upmc.com/cancer-care/lung
Please keep us posted.
——
P.S. I wrote this before seeing Tom’s (more measured) response. I’m glad you have at least two options to consider. 
 
Karen

Jacob, take care about the things you read about diet and all kinds of other stuff. There’s a lot, and there’s a lot of hoo-ha too. The parting words from the oncology dietician were, “Don’t believe the bullsh—.” 
Credible sources include peer-reviewed articles in research-oriented journals and websites, sites like Lungevity and Go2, sites of major cancer centers. 
I find Cancer  Research UK to have comprehensive articles. This piece on sugar gets into some interesting nuances about sugar and cancer. Most interesting is the video that appears part of the way down the page, called "Ten Persistent Myths About Cancer, Debunked." 
Your mom is probably delighted and grateful that you are with her, but an important part of being a lung cancer person is becoming active in your own care. You might talk with her about what, exactly, she wants and/or needs from you right now. If that’s to overhaul her diet, then great. But if she'd rather just watch Netflix with you, then try to roll with it. 
Which is not to say, don't do anything. Perhaps the search right now would be for a pain management specialist. You'll hear many people talk about their palliative care team, which is a person or group of people who specialize in helping people cope with pain, side effects of medication, etc. The PCP ought to be able to recommend a starting point.
Also, you might check out the caregiver forum group here. 
Hang in.
Karen
 

I said  “I feel you about the Durvalumab” when I should have said, I feel you about fear of damaging side effects! SMH
Hang in, and please keep us posted.
K
 
 

Rebecca, I feel you about the Durvalumab— after 2 infusions, I got pneumonitis. We stopped the durva, then rechallenged. Then I got such bad pneumonitis—“life-threatening,” the pulmonologist called it— that I was on high-dose steroids for 7 months. So I really understand your concern. 
No one wants to be a burden. But, as I told my 90 year-old mom who moved in with us pre-Covid, that’s part of the deal of being family. (Except, as I told her, I don’t do Alzheimer’s) I’m glad she’s here. I think she’s glad I’m here, even tho there’s been some work involved. 😜
Glad you’ve joined us. 

Rebecca, I feel you about the Durvalumab— after 2 infusions, I got pneumonitis. We stopped the durva, then rechallenged. Then I got such bad pneumonitis—“life-threatening,” the pulmonologist called it— that I was on high-dose steroids for 7 months. So I really understand your concern. 
No one wants to be a burden. But, as I told my 90 year-old mom who moved in with us pre-Covid, that’s part of the deal of being family. (Except, as I told her, I don’t do Alzheimer’s) I’m glad she’s here. I think she’s glad I’m here, even tho there’s been some work involved. 😜
Glad you’ve joined us. 

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

The Curcumin doesn’t interact with everything. It interacts with at least one specific targeted therapy, which is osimertinib; there is peer-reviewed stuff that indicates contraindication.  
It sounds like you have a thorough team that works together effectively. I appreciate hearing about the combination of treatment paths you are following, especially since it’s all been given the OK by your care team. Acupuncture is often mentioned by LC people I know. 
Your mention of PEMF sent me looking. My first hit (“PEMF therapy has been reported to produce anti-inflammatory and bone-healing effects by decreasing the production of free radicals and stimulating osteoblasts.“ From: Biologics in Orthopaedic Surgery, 2019) sparked my interest. Without doing much more research, my guess is that this therapy would be especially significant for someone with bone mets. Is there a particular reason you’re seeking out info about it, and about the other therapies? 
FWIW, the only stuff I rely on is peer-reviewed literature, or stuff on official sites like hospitals, cancer centers, research centers, etc. People’s interpretation of research studies may be tricky. Unless they have a research background, they tend to draw broad brushstroke conclusions from very small studies, or to misinterpret findings. So, take care with what you read and give credence to. 

Finally, may I add one caution? Dealing with lung cancer is a lot like doing a marathon— or an ultra-endurance event. I hope you’ll give your husband’s body a chance to absorb and adjust to a treatment before adding another one. I believe you will need the respite of a measured pace as well. 
Thanks for sharing all the information! I look forward to hearing from others. 

 
 
 

You know, @JHP, I completely relate to your dive into the research around the time of testing or appointments— getting a sense of what possible progressions and next steps might be can ease my anxiety.
At the same time, though, my local LC support group reminds me that each day, there are new findings, just as each day, my own cancer can shift. There’s no way to keep on top of it all; besides, they suggest, is that really what I want to be doing? If so, great, but if not, maybe I need to look at what is going on so I can get a little more peace. 
When I need more info, there are lots of places to get it. Peace is good, I tell myself. And it is….

Welcome to this wonderful support team. You and your husband are hitting this stupid cancer with everything you’ve got! With the specific treatment regimen you’ve mentioned, I’m assuming they’ve done biomarker testing with tissue samples, or at least a blood biopsy? 
I echo Lily’s cautions. Curcumin, for example, is a great anti-inflammatory but interferes with the efficacy of TKIs. A friend of mine who’s lived with Stage 4 for 16 years used to make a horrible looking concoction with turkey tail and curcumin. He’s ditched the curcumin, not sure about the turkey tail. At my cancer center, I was instructed to use L-glutamine during chemo & radiation. People in my local support group talk about vitamin C infusions, which got too costly for them to continue. I think we all do what we think is best, but there’s a lot of misinformation out there. Here’s my contribution to the recent discussion we had about sugar: 
Have your oncologist and ND had a conversation? 
BTW, @LilyMir, FWIW, I was just in a webinar yesterday where one of the hotshot EGFR researchers (Dr. Janne) said there is no evidence to support intermittent fasting. 
@LovingWife, please keep us posted about what you learn. Best of luck to you and your beloved. 
 
Karen

The Curcumin doesn’t interact with everything. It interacts with at least one specific targeted therapy, which is osimertinib; there is peer-reviewed stuff that indicates contraindication.  
It sounds like you have a thorough team that works together effectively. I appreciate hearing about the combination of treatment paths you are following, especially since it’s all been given the OK by your care team. Acupuncture is often mentioned by LC people I know. 
Your mention of PEMF sent me looking. My first hit (“PEMF therapy has been reported to produce anti-inflammatory and bone-healing effects by decreasing the production of free radicals and stimulating osteoblasts.“ From: Biologics in Orthopaedic Surgery, 2019) sparked my interest. Without doing much more research, my guess is that this therapy would be especially significant for someone with bone mets. Is there a particular reason you’re seeking out info about it, and about the other therapies? 
FWIW, the only stuff I rely on is peer-reviewed literature, or stuff on official sites like hospitals, cancer centers, research centers, etc. People’s interpretation of research studies may be tricky. Unless they have a research background, they tend to draw broad brushstroke conclusions from very small studies, or to misinterpret findings. So, take care with what you read and give credence to. 

Finally, may I add one caution? Dealing with lung cancer is a lot like doing a marathon— or an ultra-endurance event. I hope you’ll give your husband’s body a chance to absorb and adjust to a treatment before adding another one. I believe you will need the respite of a measured pace as well. 
Thanks for sharing all the information! I look forward to hearing from others. 

 
 
 

Hahaha. I was thinking I wish I’d posted about the webinar so that other folks (especially you) could watch. I shoulda known you’d find it….

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

@Jacob, I’ve been thinking about you and your mom. I hope things are moving ahead.
Karen

@Jacob, I’ve been thinking about you and your mom. I hope things are moving ahead.
Karen

Whoa, whoa, whoa, @Rebecca Chambers, I know this new treatment path sounds very scary, but opting to not do treatment feels like a really shocking move to me. I think you have more options than your doctor gave you.  
People live with Stage 4 lung cancer for many many years— in my local LC group, we’ve got a 9 yr and a 16 yr survivor— and others. These folks are living active, full lives. I’m only into my third year. As a Stage 4 person, I’m training for a challenging distance bicycling ride and heading to Italy tomorrow. I am not trying to one-up your staging, but Stage 3 gives you even wider options! 
What kind of biomarker data is your doctor working with? 
And nobody talks about life expectancy in that kind of way any more— that data is completely out of date, not to mention stupidly inaccurate. I can’t even count the number of people whom I know were once told they had x time to live and are now looking at those predictions in the rearview mirror. 
If you feel strongly that you have only these options, then you need to return to your oncologist for a discussion about other alternatives. If that’s all they’re offering, then you must get to a different doctor, a lung cancer specialist, preferably at a major cancer center and get another opinion. The changes in the field of lung cancer are coming too fast and furiously for a general oncologist to keep up. Doctors will sometimes do second opinion meetings virtually if you feel you can’t travel.

Search these forums for more people’s experiences with Keytruda. Stay off of Dr. Google— unless you have a lot of experience discerning hysteria from fact, Google will just make you a basket case of anxiety. And please, seek lots more information before you make such an extreme decision. This forum is useful, plus there are other sources of support that folks here can guide you to. 
Please, if you can’t feel hopeful right now, let us feel it for you. It takes a little time to learn, but it’s never too late to start. Please keep us posted. 
 
Karen

 

I haven’t been on Keytruda but I know of some folks who have, with no or little side effects. I Amon another similar drew, Imfinzi (durvalumab). No side effects but it’s early. My chemo doc says 92% hav none or very mild. All th info has to cover ALL side affects ever experienced and can be scary. I guess I wouldn’t make my decision based on the worst   Don’t lose hope, as hard as that is. Good luck. 

My CT with contrast happened Monday, I received results Monday afternoon, and met with the oncologist today. 
The scan indicates that my situation is stable. 
My oncologist says I can go from scans every two months to scans every three months. 
Brain checkin next month. 
I am very very grateful.

Hi @Kimbertd, 
I, too, am glad you found us. You're in a hard time, for sure, but you will find good information on this forum, and on the general lungevity.org site. Perhaps you'd do a separate post on the Introductions page. There are people here with young children and with lots of stories of mets. A separate into will make it easier for people to find you! 
I will tell you the story of friends of my daughter. 30 years old, bad back pain. They couldn't figure it out but saw that the spine was degenerating so went in to stabilize it. They did some biopsies and, there was Stage 4 lung cancer. Fast forward a year: she's off crutches, back at a demanding job, stable on a TKI, and newly married, to boot. 
Lung cancer is horrible and devious, but again and again, I've seen people come back from bad times. I wish you and your husband the best moving ahead. 
Please keep us posted.

Judy! 
I was recently wondering how you are doing. So glad to hear you continue to be well, and that your husband is now well, too. Enjoy these spring-summer days.
Karen 

Hi Jeff,
Your mom has had a rough road so far; I'm sorry to hear that. The arm swelling and headache are important info for the doc to know; the cancer center where your mom is being treated should have a palliative care team, which can help with pain and side effects.
I wish I had better news about the esophagitis, but after I finished radiation, I was told things would get worse for about 2 weeks after the final treatment, and then things would s l o w l y improve. They were right. Things got worse. But they *did* get better. The key is to stay in touch with the medical team. The adage, "The squeaky wheel gets the grease," is important to remember. We tend to be too dang nice for our own good. Your mom had the right to not suffer, you have the right to make sure she isn't, and they have the responsibility to help her. The key is to be assertive but not aggressive. 
Best of luck , and please keep us posted,
Karen

Judy! 
I was recently wondering how you are doing. So glad to hear you continue to be well, and that your husband is now well, too. Enjoy these spring-summer days.
Karen