My 63yo mom diagnosed with Lung Cancer in left lung upper lobe, rib, t3/t4 vertebrae

[Jacob]

Hello,

 

I'm 24 years old and moved out of home last year, but flying back in a few days after my mom received the diagnosis a few days ago. She has been having a specific back pain since last October, and some rib pain she thought was indigestion. She was taking aspirin and Tylenol for the pain much too long, and was originally getting scans for related issues. 

 

She got a CT scan finally recently, and found out while at work Friday that it's lung cancer. It's in her left lung upper lobe, t3 and t4 vertebrae, and one of her ribs. Apparently the rib is not looking good and will probably need removed.

 

She's seeing a specialist on Monday (tomorrow), to figure out where to go from here I guess. I've been researching like crazy, I couldn't get a decent flight until Wednesday so I'll just be panicking until then I guess. 

 

I'm here to find out what to do, where to go, what to tell her, etc. I'm completely lost. I know she's lost too. She lives alone, we have family in the area but they have families of their own, so I'm fully expecting to fly back and help her wherever I possibly can, and don't care if I ever come back to where I moved. I am fortunate enough to work remotely so there is no worries there. She works for a hospital system outside Pittsburgh, PA, and has for most of her life as a transcriptionist and a front-desk assistant, and was due to retire in a few years. She's definitely not heading back to work now ever again though, she told me she's taking the week off since she has so much saved up PTO to figure things out. So I guess she will use all of her PTO, or however that works, and do some kind of medical leave so she can have insurance to handle the storm that just arrived. 

 

Since we live within an hour from Pittsburgh, I've been researching anyone in the area to help us with getting some sort of biopsy to figure out exactly what mutated. To my understanding, there are targeted drug therapies available for specific mutations, as well as new-ish immunotherapies such as TCR Gene Therapy. I also found some hope here. I'm assuming a combo of surgery, chemotherapy, followed by immunotherapy is in the near future. 

 

I'm trying to create a plan, and so far I have the following:

 

1. Get back home as soon as I can and help her with absolutely anything she needs (she's in good shape, not overweight, but has smoked 1/2 cigarettes a day most of her life)
2. Find out what she can take right now for reducing the back and rib pain so she can sleep properly at night (looking into CBD edibles or THC, doesn't matter, just anything that will help the pain that's not Aspirin or similar).
3. Get to the specialist on Monday and devise a plan with them
4. Get a biopsy scheduled to figure out exactly what kind of gene mutation she has as soon as possible to devise a treatment plan

 

I want to note, I'm a software engineer so I (think) I am capable of understanding complex treatments and the situation here, and am familiar with advancements in using artificial intelligence to personalize lung cancer treatment, so feel free to dump absolutely any help on me regardless of how complicated. If anyone has any knowledge of places in the Pittsburgh area, or anywhere in the world really, that use these newer methods using AI of finding treatment / targeted drug therapies / immunotherapies, or anywhere that uses T-cell gene therapy, please let me know. I am a firm believer in data, and prefer to work with any treatments or clinical trials that focus on such.

 

To whoever reads this, thank you so much for taking the time. I'm terrified and so is she / our whole family. Our dog recently passed away in January, who was my sisters who passed away in 2012. My mom has been through more than any human should go through, so I just want to spend as much time as I can with her and help make this time worth living through. 

 

Thank you,

 

Jacob

[JHP]

The early days are the worst when you don't have any knowledge of what is happening and all that waiting to get appointments. The most important thing is getting a full diagnosis first. What kind of LC is it? If it is NSCLC, then biomarker testing. Before getting the biomarker testing done and knowing what kind of mutation he had, the local hospital's plan for my dad was to just do lots of radiation. After he moved to a hospital with more resources and got the biomarker testing results, it turned out that radiation would only be a small part of his treatment plan, and it would mainly be targeted therapy.

Maybe you can ask the specialist she's seeing if they offer biomarker testing. If they don't or if you're looking for an alternative place for long term-treatment, you could start with NCI facilities. The designation basically means that they have better outcomes relatively speaking than local hospitals or other places without the designation. Ideally, find a oncologist specializing in LC.

Quote

Find out what she can take right now for reducing the back and rib pain so she can sleep properly at night (looking into CBD edibles or THC, doesn't matter, just anything that will help the pain that's not Aspirin or similar).

The doctor can prescribe oxy or other strong painkillers.

Quote

Get a biopsy scheduled to figure out exactly what kind of gene mutation she has as soon as possible to devise a treatment plan

Yes, the sooner the better. They'll be able to tell pretty soon after getting a tissue sample what kind of LC it is under the microscope, but the biomarker testing has a longer turnaround time for tissue vs liquid biopsy. For my dad who got both, it was 3 weeks vs a little over a week. The biomarker testing will determine whether targeted therapy or immunotherapy would be applicable.

[LilyMir]

Sorry to hear about your mom Jacob! A LC diagnosis is brutal but after recovering from the shock one has to move very fast to figure out: what kind of LC, are there actionable mutations, what chemo/immuno/targeted therapies are relevant. Given it seems to be stage 4, I assume doctors will do radiation? For answers you need to consult: a specialist LC oncologist, a radiation oncologist, possibly a thoracic surgeon, and a pain and symptoms management doctor.

As to what to tell your mom: tell her to ignore stats on Dr. Google, they are very outdated, to have hope since LC therapies advanced by leaps and bounds over past 5 years, to seek support from this wonderful forum should she need to connect to fellow patients or explore other experiences. Personally, the first thing I did after my diagnosis was put my affairs in order, not that I was told to expect immediate disaster (doctors were talking curative intent) but it made me feel some form of control in a new phase of my life where nothing else seemed controllable. This is a terrible disease but survival, many long term, is improving so fast.

Good luck!

[RJN]

Dear Jacob, I am sorry to hear about your mum, and reading your post brings me right back to where I was just under 2 years ago. Getting your head around the field is a vastly confusing, especially as you await confirmation of a diagnosis. As others say, this is the first critical step but can take ages. For me, it was an almost two month wait from my initial CT result to starting treatment. Depending on this there are so many different pathways that can be taken. In another LC group I am in, we are 12 stage 4 LC patients, and not two of us are on the same treatment. Once you know more, your capacity for understanding complex information will be a great help so you can read up on options. 
 

First thing though is to follow @LilyMirs advice. Dr Google is pretty useless as stats are all pre-immuno and targeted therapies (let alone various advances in personalised treatment that you mention). The real-life stats are on a very different curve but are anecdotal so far. The majority of people I met online around my initial diagnosis are going strong, and are either NED and have stable disease - and living their lives more or less as normally. I have come to think of my own diagnosis as a chronic illness, rather than a terminal one. It does take mental energy, and all the treatments etc is a major time-suck, and there is always the risk of complications/progression, but I can still run my international business, go travelling and live a fairly normal life. I did take 3 months off initially though, so I could focus 100% on my health.

re the back/rib pain. Here in the UK, we are less free with strong painkillers than in the US, so my perspective is a bit different. I had bad shoulder pain and was given a combi of paracetamol and codeine, with the occasional ibuprofen gel. It did the trick, and I would recommend trying this first, w the oxy and opioids as a second line. I have also had very good results from acupuncture (but only from a very experienced therapist). I had quite a few family members get highly dependent on opioids, so I would personally only take these as a last resort. 
 

Finally - it is tricky being far from your family. I am in the same boat as my family lives in Denmark (a two hour flight/five-hour journey). Initially, they came over often, but I eventually found it a bit much, as I just wanted my life to get back to normal after the initial shock and confusion. Your mum’s journey is likely to be a marathon, not a sprint, so it is great that you can be flexible and be there for her when she needs it.

Keep us posted, Rikke

 

[Jacob]

Thank you so much to all of you. I really, really appreciate it. You have very kind souls for even taking the time to give me any information. 

9 hours ago, JHP said:

The early days are the worst when you don't have any knowledge of what is happening and all that waiting to get appointments. The most important thing is getting a full diagnosis first. What kind of LC is it? If it is NSCLC, then biomarker testing. Before getting the biomarker testing done and knowing what kind of mutation he had, the local hospital's plan for my dad was to just do lots of radiation. After he moved to a hospital with more resources and got the biomarker testing results, it turned out that radiation would only be a small part of his treatment plan, and it would mainly be targeted therapy.

Maybe you can ask the specialist she's seeing if they offer biomarker testing. If they don't or if you're looking for an alternative place for long term-treatment, you could start with NCI facilities. The designation basically means that they have better outcomes relatively speaking than local hospitals or other places without the designation. Ideally, find a oncologist specializing in LC.

The doctor can prescribe oxy or other strong painkillers.

Yes, the sooner the better. They'll be able to tell pretty soon after getting a tissue sample what kind of LC it is under the microscope, but the biomarker testing has a longer turnaround time for tissue vs liquid biopsy. For my dad who got both, it was 3 weeks vs a little over a week. The biomarker testing will determine whether targeted therapy or immunotherapy would be applicable.

Okay, she's having a call with an oncologist today (as long as her PCP didn't forget to get it scheduled), otherwise she'll be making calls around herself. I'm definitely hoping it's NSCLC, because it seems targeted therapies would be a much more likely option, and I'm also hoping the mutation is not one caused by the (light) smoking, since it seems those mutations are more rare and harder to target still. This hospital seems to be the leader in Pittsburgh for LC treatment, who is partnered with our neighborhood nearby hospital. I am completely open to taking her to any corner of the earth for the best treatment, but insurance and such is going to be quite annoying. 

 

I told her to mention to the oncologist today about the biomarker testing if NSCLC, and about getting some sort of sample to find out if NSCLC.

 

Thank you again.

 

8 hours ago, LilyMir said:

Sorry to hear about your mom Jacob! A LC diagnosis is brutal but after recovering from the shock one has to move very fast to figure out: what kind of LC, are there actionable mutations, what chemo/immuno/targeted therapies are relevant. Given it seems to be stage 4, I assume doctors will do radiation? For answers you need to consult: a specialist LC oncologist, a radiation oncologist, possibly a thoracic surgeon, and a pain and symptoms management doctor.

As to what to tell your mom: tell her to ignore stats on Dr. Google, they are very outdated, to have hope since LC therapies advanced by leaps and bounds over past 5 years, to seek support from this wonderful forum should she need to connect to fellow patients or explore other experiences. Personally, the first thing I did after my diagnosis was put my affairs in order, not that I was told to expect immediate disaster (doctors were talking curative intent) but it made me feel some form of control in a new phase of my life where nothing else seemed controllable. This is a terrible disease but survival, many long term, is improving so fast.

Good luck!

Thank you Lily, I appreciate it. I'm starting to understand the process here, you summed it up well. NSCLC? Common mutation that has a known targeted therapy / treatment options for it?  I've let my family know to stop consulting Dr. Google, including myself, since all I keep reading are stats, but I do realize that treatments for this disease have progressed a lot recently. Once I get home, I'll be grocery shopping for healthy foods, taking her on walks each day as she is able, and getting that immune system boosted through this process. I think it will improve mental health as well, and help us think more clearly through this all. 

 

Thank you again so much. I actually quoted some of what you said and sent it to my brother. It's one thing to find these new accredited research articles online on LC treatments popping up, but it's another to hear from someone that advancements truly have occurred. I know not many decades ago was LC considered a sentencing, so I'm trying to get the modern-science-hope energy across to my family. 

 

5 hours ago, RJN said:

Dear Jacob, I am sorry to hear about your mum, and reading your post brings me right back to where I was just under 2 years ago. Getting your head around the field is a vastly confusing, especially as you await confirmation of a diagnosis. As others say, this is the first critical step but can take ages. For me, it was an almost two month wait from my initial CT result to starting treatment. Depending on this there are so many different pathways that can be taken. In another LC group I am in, we are 12 stage 4 LC patients, and not two of us are on the same treatment. Once you know more, your capacity for understanding complex information will be a great help so you can read up on options. 
 

First thing though is to follow @LilyMirs advice. Dr Google is pretty useless as stats are all pre-immuno and targeted therapies (let alone various advances in personalised treatment that you mention). The real-life stats are on a very different curve but are anecdotal so far. The majority of people I met online around my initial diagnosis are going strong, and are either NED and have stable disease - and living their lives more or less as normally. I have come to think of my own diagnosis as a chronic illness, rather than a terminal one. It does take mental energy, and all the treatments etc is a major time-suck, and there is always the risk of complications/progression, but I can still run my international business, go travelling and live a fairly normal life. I did take 3 months off initially though, so I could focus 100% on my health.

re the back/rib pain. Here in the UK, we are less free with strong painkillers than in the US, so my perspective is a bit different. I had bad shoulder pain and was given a combi of paracetamol and codeine, with the occasional ibuprofen gel. It did the trick, and I would recommend trying this first, w the oxy and opioids as a second line. I have also had very good results from acupuncture (but only from a very experienced therapist). I had quite a few family members get highly dependent on opioids, so I would personally only take these as a last resort. 
 

Finally - it is tricky being far from your family. I am in the same boat as my family lives in Denmark (a two hour flight/five-hour journey). Initially, they came over often, but I eventually found it a bit much, as I just wanted my life to get back to normal after the initial shock and confusion. Your mum’s journey is likely to be a marathon, not a sprint, so it is great that you can be flexible and be there for her when she needs it.

Keep us posted, Rikke

 

Hi Rikke, thank you. I hate to bring people back to the past, but you seem like a soldier. I see your from the UK; my mom's father (never got to meet him) was Scottish, and served in the royal Air Force in WW2. He was actually captured by Germany and released at some point. He had 8..? children I believe, so I have quite the extended family. It's been a dream of mine since childhood to visit London and Scotland. 

 

It seems that getting personalized treatment plans is the way to go now, considering not two of you in the 12 person group is on the same treatment. I'm going to try to be in the room with my mom when she speaks to doctors to stay up to date. It's always helpful to hear that Dr. Google is not the best reference, since I know my family and I probably all jumped straight on google and typed in the same sentences. 

 

I like the way you think of this disease, as a chronic illness and not a sentencing. I hate to admin it but the first think that popped into my head upon waking up to the phone call was a giant timer. But seeing this as an illness to battle helps shape it differently. I'll be doing my best to help her avoid painkillers (maybe too much information, but I grew up around many people addicted to them and things worse, so I fully understand the effects they have on the body, brain and soul), and since marijuana is medically legal in Pennsylvania, and takes about 5 minutes to get a license for, I won't be surprised if she goes that route. I know there are edible versions that stop the pain but don't mentally affect you. If that doesn't work, then onwards to other options. I'll be speaking to her about acupuncture since I've only really ever heard good things about it honestly. 

 

I am prepared for the marathon. I've accepted that I may never come back to where I moved (8 hours of non-direct flights, not including the 1 hour drive to the airport from home), and am willing to leave all things behind, besides what I bring with me, to get this situation under control. I hope that it doesn't come to that and things calm to where I can go back and forth without anxiety, but I'm prepared at least.

 

Thank you for responding with your personal experience. I sincerely appreciate it. I'll introduce my mom to this forum since I think speaking to people that have been in her situation will help her feel less alone. As much pain as I'm feeling and everyone else is feeling, she's the one going through it at the end of the day so I'm sure speaking to others will help a lot. What a blessing this forum is. Thank you again. 

[Tom Galli]

Jacob,

Welcome here.

I'm alive 19 years after an advanced stage diagnosis with a total of 5 progressions. I've experienced every form of treatment but immunotherapy, and the last and curative was precision radiation in the form of SBRT CyberKnife. I'm a civil engineer and like you have a deep preference for data and analysis to self-solve problems. But, my analytical approach failed miserably. There was just too much to absorb, the disease was too complicated, and (fortunately) the multitude of treatments available and conditions for their application was too daunting for me to assimilate. I recommend you concentrate on the basics and absorb this material, all of it.

Like building routines of software to solve problems, treating lung cancer is a step function. Each step is well defined by best practice, and in the United States, we codify our best practice as national standards of care. These function like our engineering standards and guide the clinician in the application of well-discovered methods and techniques. I'm not trying to tell you that your analytical skills are not helpful. Indeed they will help you rapidly assimilate Lung Cancer 101 and give you a foundation to understand our disease in its myriad of presentations.

As an example, you cite immunotherapy as an advance that might apply to your mother. But your description of your mom's condition points to advanced-stage disease and her clinicians will likely want to kill cancer cells quickly. To do so, they might turn to combination "old school" therapies that do just that: perhaps conventional chemotherapy and fractional general radiation. Then, once the tumor burden is lessoned, progress treatment to targeted therapy or immunotherapy.

I'll take off my engineer's hat. Analytics have their place but so does faith and hope. To bolster my assertion, look at this photograph from our recently concluded Hope Summit. Our Lungevity Nurse Navigator is in the middle and surrounded by long-term survivors, three of which are still in treatment. I'm the outlier in the upper right. I was pronounced cured 2 years ago.

Know you've found us, and we are an assemblage of people who well understand this disease, its presentations, frustrations and treatment. We will help you every step of the way.

Help your mom through diagnosis; a biopsy is surely in her future. Help her understand what is happening. Apply your learning from Lung Cancer 101 to explain the first and perhaps subsequent treatment plans to your mother. Help her manage fear. Keep her from despair. Attitude counts. Listen to this noted scientist on statistics, attitude, and prognosis. And, we are here for you to answer questions.

Stay the course.

Tom

[Karen_L]

Jacob! I'm glad you've found us. 

You've gotten so much great information already. I want to go back to what Lily said early in her response and give it a big emphasis. It's essential that you find and work with a lung cancer specialist. The changes in the field are simply coming too fast for a general oncologist to keep up. 

I was diagnosed three years ago, when I was 63. The first year was rugged, but I've been stable for more than a year, and living a pretty wonderful life. (I'm getting ready for two weeks in Italy! Woot!) 

My only symptom was a stupid cough, which I thought was asthma. I had an innocent chest Xray to see if I had pneumonia, on February 8. Treatment started on April 1, 7 weeks later (it still cracks me up that I started treatment on April Fools Day.) At one point, I said something to one of the team about speeding up the process. He gave me a sympathetic look and said, "Believe it or not, we are moving at warp speed." 

So, please try to remember that It takes time, a lot of time, for the docs to get the right information to craft an appropriate treatment plan.

Waiting is agonizing. Try to keep your mind in the present moment. Take slow, deep breaths to relieve a little stress. 

We'll be glad to meet your mom whenever she comes. 

 

[Jacob]

On 5/8/2023 at 11:50 AM, Tom Galli said:

Jacob,

Welcome here.

I'm alive 19 years after an advanced stage diagnosis with a total of 5 progressions. I've experienced every form of treatment but immunotherapy, and the last and curative was precision radiation in the form of SBRT CyberKnife. I'm a civil engineer and like you have a deep preference for data and analysis to self-solve problems. But, my analytical approach failed miserably. There was just too much to absorb, the disease was too complicated, and (fortunately) the multitude of treatments available and conditions for their application was too daunting for me to assimilate. I recommend you concentrate on the basics and absorb this material, all of it.

Like building routines of software to solve problems, treating lung cancer is a step function. Each step is well defined by best practice, and in the United States, we codify our best practice as national standards of care. These function like our engineering standards and guide the clinician in the application of well-discovered methods and techniques. I'm not trying to tell you that your analytical skills are not helpful. Indeed they will help you rapidly assimilate Lung Cancer 101 and give you a foundation to understand our disease in its myriad of presentations.

As an example, you cite immunotherapy as an advance that might apply to your mother. But your description of your mom's condition points to advanced-stage disease and her clinicians will likely want to kill cancer cells quickly. To do so, they might turn to combination "old school" therapies that do just that: perhaps conventional chemotherapy and fractional general radiation. Then, once the tumor burden is lessoned, progress treatment to targeted therapy or immunotherapy.

I'll take off my engineer's hat. Analytics have their place but so does faith and hope. To bolster my assertion, look at this photograph from our recently concluded Hope Summit. Our Lungevity Nurse Navigator is in the middle and surrounded by long-term survivors, three of which are still in treatment. I'm the outlier in the upper right. I was pronounced cured 2 years ago.

Know you've found us, and we are an assemblage of people who well understand this disease, its presentations, frustrations and treatment. We will help you every step of the way.

Help your mom through diagnosis; a biopsy is surely in her future. Help her understand what is happening. Apply your learning from Lung Cancer 101 to explain the first and perhaps subsequent treatment plans to your mother. Help her manage fear. Keep her from despair. Attitude counts. Listen to this noted scientist on statistics, attitude, and prognosis. And, we are here for you to answer questions.

Stay the course.

Tom

Hi Tom, thank you for responding, and sending those links over. I read all of the Lung Cancer 101. I understand the warning for not trying to understand every corner of this. I'm definitely trying to, and it's probably making things worse, because doctors are currently moving slower than the panic I'm having calls for, and its against all the information I'm taking in about the urgency of the situation. 

 

Currently just from the CT scan it's known to be in her lung (grapefruit sized mass), in a rib bone (apparently the doctor used the word "massacred" for explaining the rib, and my mom is afraid of moving wrong and breaking it now), and in her t3/t4 vertebrae as some sort of mass I think.

 

Right now I'm also trying to target diet. I came home to all the food that was sent to her, which was dessert after dessert. To my understanding, 0 sugar is required since it's like jet fuel for the cancer cells. I've read some about this idea of "starving" the cells in any way you can, just to slow the growth at some rate. 

 

I appreciate you telling your story. I've certainly been praying every night lately; I don't believe anyone in the world deserves something like this. Thanks again. 

8 hours ago, Karen_L said:

Jacob! I'm glad you've found us. 

You've gotten so much great information already. I want to go back to what Lily said early in her response and give it a big emphasis. It's essential that you find and work with a lung cancer specialist. The changes in the field are simply coming too fast for a general oncologist to keep up. 

I was diagnosed three years ago, when I was 63. The first year was rugged, but I've been stable for more than a year, and living a pretty wonderful life. (I'm getting ready for two weeks in Italy! Woot!) 

My only symptom was a stupid cough, which I thought was asthma. I had an innocent chest Xray to see if I had pneumonia, on February 8. Treatment started on April 1, 7 weeks later (it still cracks me up that I started treatment on April Fools Day.) At one point, I said something to one of the team about speeding up the process. He gave me a sympathetic look and said, "Believe it or not, we are moving at warp speed." 

So, please try to remember that It takes time, a lot of time, for the docs to get the right information to craft an appropriate treatment plan.

Waiting is agonizing. Try to keep your mind in the present moment. Take slow, deep breaths to relieve a little stress. 

We'll be glad to meet your mom whenever she comes. 

 

Hi Karen, thank you for sharing your story. My mom has not seen an oncologist yet; I thought that's who she was seeing on Monday, but her PCP directed her to have a call with a surgeon, who she is now meeting on Friday (it's Wednesday right now). Her PCP prescribed her Tramodol for now, for the rib pain.

 

I'm not sure if things are moving fast enough, as she clearly needs something more fitting for the pain right now, and it doesn't seem there was any speak of a biopsy or meeting with a lung cancer oncologist or any oncologist yet. She thinks the surgeon will lead her to one after speaking with them Friday, but I'm not sure if things are moving fast enough at that rate since it seems up in the air. I might / probably will try to find a lung cancer oncologist in the Pittsburgh area to email today, to get things moving. 

 

I'm trying to wait, it's just so hard with her having active pain all day in the rib and the back. I wish there was something more I could do right now. CBD, creams, anything. Thank you again for responding, I sincerely appreciate it. 

[Karen_L]

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

 

[JHP]

Quote

I'm not sure if things are moving fast enough, as she clearly needs something more fitting for the pain right now, and it doesn't seem there was any speak of a biopsy or meeting with a lung cancer oncologist or any oncologist yet. She thinks the surgeon will lead her to one after speaking with them Friday, but I'm not sure if things are moving fast enough at that rate since it seems up in the air. I might / probably will try to find a lung cancer oncologist in the Pittsburgh area to email today, to get things moving. 

I was exactly where you are now back in December except my dad could no longer walk or turn his head. He managed his pain with pain killers and accupuncture for about two months before going to the ER and getting diagnosed. Worst of all, it was an insurance quamire since he was moved across state lines after the admitting hospital decided this was beyond their scope (their surgeon was not specialized in this and the risk was paralysis) and they wouldn't allow any oncological treatment before returning to state. To their credit, the biopsy and biomarker testing was done at the second hospital. After this choosing a facility ordeal, my advice is to find an oncologist specializing in LC at the best facility overall that you can, because they will be more up to date with LC specific treatments and have more resources. For example, waiting for scans has never been a problem at the current place because it's as simple as if the doctor decides that it's urgent they let him jump the line same day (not the case with the two previous hospitals he was at). My dad's oncologist became the main point of contact to coordinate with other specialists like radiation oncologist, brain mets specialized radiation oncologist, neurosurgeon, etc.

I don't personally know anyone who has a drug addiction, so maybe it's different for people who did witness addictions all around them. Imo, if your mother is hurting and unable to sleep, and being able to rest is important, now is not the time to worry about developing a lifelong drug addiction. I worried a bit about this too and asked if he should wean off after his condition improved a bit, but the oncologist's attitude was basically you never know what will happen in the near future and any fears at this juncture should be weighed against giving the patient a good quality of life at this moment. 

I highly encourage you to reach out to facilities you're interested in with oncologists + radiation oncologists by phone to inquire about possible appointment times because they'll need to be brought on anyway. If surgery is needed later, the oncologist can always refer you, but you don't necessarily need to see the surgeon before trying to make these appointments. I coordinated with the hospital's patient outreach to get him appointments with the place he's at now, but idk about your insurance. If your mother is already diagnosed, then reach out to the pcp or whoever diagnosed her to try getting a referral to where you want to go. Also, do your own research about the facilities. Before they discharged him, Dad was given the choice of going back to the subpar original hospital that transferred him or going to a good NCI but with a 2 week wait time for oncological treatment. I later asked about a third option and it was actually available and even sooner, but they just routinely recommend to the good NCI.

 

[LilyMir]

Regarding the 'no sugar for cancer patients', I am not sure what basis was ever used for such a claim. A human body normally regulates glucose level in the blood and keeps it at a narrow range (a process called glucose homeostasis where the body uses insulin to lower blood sugar, and glucagon to raises it). While cancer cells have faster metabolism (a fact used in the PET scans we  get), eating more sugar does not increase your blood sugar to abnormal levels unless one has other diseases, like Diabetes, affecting sugar regulation.

Excess sugar beyond that needed for normal body function is stored in body in form of fat etc or released in urine. Being overweight can cause a host of problems, sure, however, blood goes everywhere and feeds all cells so sugar does not just "feed cancer cells"  (it feeds  all cells!) and "starving cancer" means starving oneself, just not possible. I hear of research trying to find ways to indeed just starve the cancer cells by changing their metabolism but I am not aware of any clinical usage yet.

Certainly we all should eat healthy.  Variety and balance is the key though. To me, life without any sugar is just bleak.  

[RJN]

So much great input here, so just popping in to support some really critical points - and clarify my own…

- The sugar/diet thing is complex, and probably not worth prioritising - personally I don’t have a sweet tooth, but if anybody had decided to take my bread and butter (literally - it’s my favourite snack!) during the early days of diagnosis, their prognosis for survival in my omenwould have been poor!

- Make sure you really check in with your mum on what is important for her right now. My dad drove me bonkers with his concern, whereas my brothers and friends hung out with me and had a glass of wine and that was the best thing to keep me grounded. Everyone have different needs at this crazy stage.

- Like you, I am concerned about opioids, and I would try a few things first, but @JHP is absolutely right that a good night’s sleep is crucial for both physical and mental health at this stage. I would most certainly have moved to an opioid if the other options hadn’t worked. We don’t have much of a palliative care system here in the UK, so I can’t comment personally, but sounds like a great idea.

[JHP]

I agree with everyone about sugar. It certainly won't hurt to reduce added sugar if excess amounts are being consumed, but carbs are turned into glucose too so you're not really removing glucose from the body by removing sugar. If one were to consider trying to affect the body via the fact that cancer cells have a higher metabolism, then there seems to be some benefits to reducing the body's glucose levels beyond normal...but people who are severely weakened and who have lost a lot of weight shouldn't try according to the papers. There's more literature out there about combining IF with radiation/chemo.

Quote

The blood marker analysis included information from 99 people in the study. Overall, the fasting-mimicking diet:

• reduced blood glucose levels by 18.6%
• reduced blood insulin levels by 50.7%
• reduced insulin-like growth factor 1 (IGF-1) levels by 30.3%

Research shows that high levels of blood glucose and insulin are linked to a higher risk of a number of cancers, including breast cancer. IGF-1 is a hormone that helps support cell growth and development, including cancer cells. The researchers also reported results from a very early analysis of how the first calorie-restricted part of the diet affected the immune systems of 22 people diagnosed with breast cancer. This analysis was part of another ongoing study: the DigesT study.

For the DigesT study, the people followed the first five calorie-restricted days of the fasting-mimicking diet seven to 10 days before breast cancer surgery. The researchers compared:

• levels of tumor-infiltrating immune cells and activated immune marker genes in cancer tissue samples removed during biopsies before the people started the diet
• levels of the same things in cancer tissue samples removed during surgery after the people completed the first five days of the diet

The analysis showed that levels of tumor-infiltrating immune cells were higher after the fast-mimicking diet. There were also changes in the activated immune marker genes, indicating that the immune system was beginning to recognize the cancer as something it should attack.
 

source

[Tom Galli]

Jacob,

Now that you've described the extent and location of your mom's tumors, I offer this path for your mother's care.  Here is how I'd proceed.

• Surgeon: Based on the extent of your mom's disease, surgical treatment is likely not possible. But, if the surgeon is evaluating for a biopsy, then this consultation is useful.
• Radiation Oncologist (RO): This discipline can rapidly moderate your mother's pain with radiation. You ought to be able to make an appointment with a RO without a referral (Unless your mom's health insurance is an HMO). Any RO practicing at the University of Pittsburgh Medical Center (UPMC) will be able to deal with your mom's pain quickly without disturbing curative treatment. A RO need not wait for a biopsy to begin treatment so your mom can be scheduled for a biopsy, and in the dwell time for this procedure and designing a treatment plan, be seeing a RO for palliative treatment to reduce and perhaps eliminate pain.
• Biopsy: If the surgeon is not doing one, then an interventional radiologist can perform one. Again, this level of expertise is at UPMC.
• Medical Oncologist: This discipline will develop systemic treatment that your mom needs but biopsy results must be in hand before treatment design is performed. That is why a biopsy is so important. In reality, two biopsy procedures should be performed. A pathologist will look at tissue under a microscope (called a histology exam) to determine the type of lung cancer (each type responds to different systemic treatment). Then, the sample should be submitted for further analysis to determine if Targeted Therapy or Immunotherapy are possible methods. It is important to ensure your mom's treatment team performs both of these biopsies. Sometimes they don't do a lab biopsy.

So rather than a linear approach to diagnosis and treatment, I'd advocate a shotgun approach focused on eliminating pain as a priority measure. For help in arranging treatment for your mom, please contact Kristi Griffith, Lungevity's RN Nurse Navigator, at kgriffith@lungevity.org  Provide your phone number and she'll call you.

Stay the course.

Tom

[LilyMir]

2 hours ago, JHP said:

I agree with everyone about sugar. It certainly won't hurt to reduce added sugar if excess amounts are being consumed, but carbs are turned into glucose too so you're not really removing glucose from the body by removing sugar. If one were to consider trying to affect the body via the fact that cancer cells have a higher metabolism, then there seems to be some benefits to reducing the body's glucose levels beyond normal...but people who are severely weakened and who have lost a lot of weight shouldn't try according to the papers. There's more literature out there about combining IF with radiation/chemo.

source

Interesting angle, thanks for this. I have been hearing about intermittent fasting for a long while. This is restricting all foods (limiting calories), not just restricting sugar. I am not sure how they go from observation of correlation to causation on a small set of patients in this study though. Also, looking at their diet, one wonders if such life is better than cancer, I mean how long can one tolerate brown rice and broccoli? 

"The fasting-mimicking diet was made up of two parts: For five days, people ate a plant-based, low-carbohydrate, low-protein, calorie-restricted diet. On day one, people could eat up to 600 calories. On days two through five, people could eat up to 300 calories. For comparison, 1 cup of brown rice contains about 216 calories and 1 cup of broccoli contains about 31 calories. The people received a list of foods and beverages — with specified maximum amounts — they could eat during these five days. For 16 to 23 days after the five low-calorie days, the people could eat whatever they liked, but were advised to follow guidelines for a healthy diet."

More seriously,  I recall hearing from a top researcher that they believe the best way to have a very long life is to eat half what we now typically eat. With cancer, I guess this has merit; I assume when food is scarce, the body will start shutting down non-important parts, and with cancer cells being so hungry, it makes sense for the immune system to get rid of them fast?

BTW, I am not aware of any evidence that lowering sugar intake increases survival. One also should be very careful with fasting so as not decimate muscle mass or cause malnutrition. Interesting area of research indeed.

[JHP]

@LilyMir Glad this was of help

IF has several types which include the one mentioned here and more which this paper talks about here.

Quote

Interestingly, SF (SF is a complete cessation of all caloric intake for a limited interval of time), CR, and a KD could exert radioprotective effects because healthy cells would more efficiently adapt to glucose starvation than cancer cells, which led to a concept of a “differential stress resistance” (37–39) (Supplemental Figure 1).

The rational explanation supporting differential stress resistance is that metabolism of healthy cells is censored by suppressive control checkpoints [Rb, p53, p21, phosphatase and tensin homolog (PTEN), sirtuin-3 (SIRT3)], and is thus more flexible than cancer cell metabolism, which lacks censoring mechanisms (40, 41).

Similarly to SF and CR, KDs induce chronic glucose starvation since, in contrast with normal cells found in healthy tissues (in particular, the brain, heart, and muscle), cancer cells cannot catabolize either exogenous (supplied by dietary intake) fatty acids or endogenous ketone bodies (derived from FAO and released by the liver) to produce energy (55,56) because they lack catabolizing mitochondrial enzymes [i.e., 3β-hydroxybutyrate dehydrogenase (3β-OHBD) and succinyl-CoA:3-ketoacid-coenzyme A transferase (SCOT)] (56).

Concerning the interest of protein/amino acid restriction, it must be noted that biosynthesis and proliferation of various cancer cells lines can be supported by other nutrients than glucose (i.e., glutamine), especially in case of glucose starvation (57,58). Starvation in amino acids can inhibit tumor proliferation, as shown by arginine (59,60), serine, glycine (61), or methionine deprivation (62). Interestingly, cisplatin-resistant cells appear to be very sensitive to glutamine starvation (63). Arginine deprivation can counteract cancer development because the molecule is a precursor of polyamines, NO, and proline. An arginine diet could be effective in many cancers knowing that arginine-succinate synthetase 1 (ASS1) is commonly reduced or lost in liver cancer, metastatic melanoma, renal cell carcinoma, platinum refractory ovarian tumor, and in almost 90% of sarcomas regardless of their subtypes (60).

From <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7490158/>

There is an elevated risk of gallstones when fasting very severely so that has to be weighed against possibly beneficial outcomes as an adjuvant for people undergoing treatment. The thought is that something about plunging the body into near starvation mode modulates the immune system and primes the targeted cells to be more responsive to treatment relatively speaking. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7490158/

Quote

Preclinical experiments suggest that a short period of fasting prior to radiation, and/or transient caloric restriction during treatment course, can increase tumor responsiveness. These regimens promote accumulation of oxidative lesions and insufficient repair, subsequently leading to cancer cell death. Due to their more flexible metabolism, healthy cells should be less sensitive, shifting their metabolism to support survival and repair. Interestingly, these regimens might stimulate an acute anticancer immune response, and may be of particular interest in tumors with high glucose uptake on positron emission tomography scan, a phenotype associated with poor survival and resistance to RT.

Quote

I am not sure how they go from observation of correlation to causation on a small set of patients in this study though. Also, looking at their diet, one wonders if such life is better than cancer, I mean how long can one tolerate brown rice and broccoli? 

I believe the calorie number is the most important so technically it wouldn't have to be brown rice and broccoli but downing a calorically equal amount of soda probably wouldn't be an efficient way to go about it. I get it though. This isn't for everyone and people can do fine without it. It'd be hard to eat like this long-term, which according to the papers is not necessary though, only when paired with ongoing chemo/radiation treatments. There are some papers studying the timing of fasting when paired with treatments. IIRC, there was a specific paper saying fasting before radiation is beneficial but continuing to fast after is harmful, etc. The timing is important. They have known for a while about this mechanism, but I believe this is a recent human study. Article from 2012 on benefit with chemo

https://news.usc.edu/41212/fasting-makes-brain-tumors-more-vulnerable-to-radiation-therapy/

Quote

Short-term fasting has been shown to improve chemotherapeutic treatment with etoposide [40], mitoxantrone, oxaliplatin [41], cisplatin, cyclophosphamide, and doxorubicin [42] in transgenic and transplant mouse models of neuroblastoma, fibrosarcoma, glioma, melanoma, and breast and ovarian cancers. Alternate day fasting has also been shown to improve the radiosensitivity of mammary tumors in mice [38, 43], likely due to enhanced oxidative stress and DNA damage during short-term fasting on cancer cells. Fasting has also been shown to control circadian clock genes, the expression of which usually oscillates at specific intervals throughout the day and is coupled to processes such as oxidative stress response and DNA damage repair [44]. Chemotherapeutic treatment administered at different times of the day has been found to improve efficacy, believed to be due to circadian rhythmic control of stress responses [45]. Fasting may therefore improve the efficacy of anti-cancer therapies in part by controlling the circadian rhythm.

From <https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-017-0873-x>

Quote

 I recall hearing from a top researcher that they believe the best way to have a very long life is to eat half what we now typically eat.

Considering that statistically people eating the typical western diet are getting fatter, that checks out in general.

Consuming excess calories in general can cause excess weight -> obesity is a major cause of inflammation -> inflammation is associated with many conditions including development and progression

But speaking specifically about fasting, there's some beneficial mechanism there...

[Karen_L]

Jacob,

It looks like we’ve strayed into territory a bit afield from the immediate topic of you and your mom. It may give you a feel for how interesting research becomes to many of us— after we’ve gotten through diagnosis, treatment, and the accompanying emotional storms. 

Please keep us posted about what’s happening with you and your mom. We’ll be thinking of you both as all the appointments begin. 

Karen

[Karen_L]

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

Karen

[Jacob]

On 5/18/2023 at 8:46 PM, Karen_L said:

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

Karen

Hello Karen, 

 

Sorry I have not been giving any updates. I was hoping to come back with some good news for once, but our experience with her hospital system has been not good, to say the least.

 

This is her 3rd week after diagnosis, and she has not received a biopsy, any plans for radiation treatment, or better pain management.

 

She was prescribed the simple 5mg Oxycodone, and told to take every 6 hours, and given 1 week supply with no refills. We are told to run out on a Friday, and get a new prescription each Friday. It does not work. She is in often excruciating bone pain since it has reached her ribs, and needs the oxy 24/7 to stay coherent. She can't eat or sleep when the pain exists. I want to convey the level of the pain but I'll leave other details out, hopefully this gets the point across. We have asked multiple times, saying please give her some better pain management, so this week they prescribed her 5mg Oxycodone again (basic tablet, not extended release or anything), which has consistently taken 30 mins or longer to kick in, and lasts about 3 hours at its best. So, she has been taking it every 4 hours to be able to function. Based off all this information we gave the thoracic surgeon's office (not her PCP, he refused to provide any prescriptions or help on that side, and said that is up to the thoracic surgeon's office who has been scheduling her care), they instead prescribed her 5mg Oxycodone this week again, but a 2 week supply, and instead of recommending 6 hours, the bottle now says every 8 hours. I don't understand what they were thinking, but they made it worse.

 

So now it is week 3. She received a call a few days ago apologizing for some kind of mixup from the radiation oncologist for not having either biopsy scheduled, and no treatment plan in place. The needle biopsy is now scheduled for Thursday, and more bloodwork tomorrow for something, I forget. That is another worry, since they told us about the rates of collapsed lungs caused by it, but I guess due to the location of the tumor nothing else is possible (?).

 

She has worked for this hospital system for 35 years, and somehow they have managed to allow her to go 3 weeks since diagnosis with no pain management beyond a 2 week supply of 5 mg basic tablet Oxycodone, no biopsy, no treatment plan. I won't lie, it has been very hard to wake up most mornings to my mom crying because of how bad her pain is, and how the oxy is not helping for more than a few hours through the night. Very hard to watch her be ridden to the couch, because it keeps her stiff in a position she can be somewhat more comfortable in versus the bed. Very hard to watch these things happen while spending every day hoping for a call from someone to move things forward. 

 

After the CT scan however, we were able to visit the thoracic surgeon who reviewed it with us in the room. I forgot to make it clear whether or not it seemed to be multiple tumors outside the lung, but right now it is a fairly large one in the upper left lobe, that seemed to have either grown through or around the rib bone behind it. She had the PET scan a few weeks ago, but we've heard nothing about it since. I'm assuming the radiation oncologist from a few days ago has ahold of it. My mom and I have decided to not look at it, as we've decided ignorance is a bit of bliss during this turmoil. 

 

I really, really wish I had some good news to give. But it has been extremely rough, with the pain she is in and having to motivate her to make the phone calls to find out why nothing is going on. It is coming down on her, that she's having to make sure people are doing their job while they refuse her better pain management even in the meantime. The thoracic surgeon's office actually told her to cancel a pain management appointment she made with the local place, as "they will be handling that". Of course she is not going to do that, especially since they told her she won't receive an appointment until the last week of June, unless a cancellation comes up. 

 

I'll bring back updates as they come, hopefully better news. But I am extremely fed up with this hospital system, and the fact that she worked for them her entire adult life, and know she is in horrible pain in her back and ribs, and have moved nothing forward without heavy push from our side. 

 

I have however got a better regimen going for her. The first week was rough, but the second week was much more rough. There wasn't much leaving the couch, let alone going outside, and no leaving the house due to the pain. Fighting for the pain meds worked though, even after being denied by the family PCP. This helped her to get back outside and we've even been to some stores and shopped as normal. I am on her HIPAA forms now, so I will be making many calls this week to get their problem fixed. I also should put here that she is around 5'4 or so and hovering around 120/130 lbs, normally quite active.

 

I hope this is not TMI. But this is the raw experience right now, and maybe I'm hoping someone tells me this is not how this is supposed to go, and the hospital is truly messing up here. Or maybe this is normal, I don't know. But I'm fighting for her and making life as comfortable as I can at the moment. 

[Tom Galli]

Jacob,

I can definitely say your struggle to get physicians to pay attention to your mom's disease is definitely not normal. Please call Kristi Griffith at (214) 726-2112. Kristi is a Registered Nurse who works for the LUNGevity Foundation. Tell her I asked you to call her and see if she can move your mom's medical system.

Stay the course.

Tom

[Karen_L]

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

[RJN]

Dear Jacob. Although I may not know the US system, I feel confident to state that this is far beyond the pale of what is acceptable in just about any system in the world (and I lived in a lot of so-called developing countries). Hope Tom’s advice will move things to a better place. I am utterly shocked. Wishing your mum and you all the best, R

[LilyMir]

Hi Jacob, this lack of care or any empathy is horrifying, and I am from BC where we now ship cancer patient to Bellingham for care since our healthcare system has been mismanaged to the ground.

You must seek better care for your mom, the US has some of the best care anywhere (hopefully she is insured). From experience, you have to ensure things happen. Never sit idly waiting for anyone to call. Call and (respectfully but firmly) demand immediate care and don't stop until you do get that. Being  left in such pain is medieval, my gosh what are these doctors thinking!

Also, doesn't you mom know many in that healthcare system if she worked in it for decades? Now is the time to call for urgent "help" within the system.

[Jacob]

Thank you everyone, it's one of those things where I really just want to trust these people to be handling the situation properly, and so does she, especially since it's the health care system she's worked at for so long, doctors she has known / known of for years. Everyday I ask to call and get updates, but I'll definitely be making calls this week now. I kind of just went along with this limbo thinking this is how things go when having a cancer diagnosis, and that we have to wait, lists are long, or something like that. But now I realize that this is really not how this is supposed to move along. I have been so surprised how non-chalant each person we've spoke to so far have been. It's honestly bizarre at this point.

 

3 hours ago, LilyMir said:

Hi Jacob, this lack of care or any empathy is horrifying, and I am from BC where we now ship cancer patient to Bellingham for care since our healthcare system has been mismanaged to the ground.

You must seek better care for your mom, the US has some of the best care anywhere (hopefully she is insured). From experience, you have to ensure things happen. Never sit idly waiting for anyone to call. Call and (respectfully but firmly) demand immediate care and don't stop until you do get that. Being  left in such pain is medieval, my gosh what are these doctors thinking!

Also, doesn't you mom know many in that healthcare system if she worked in it for decades? Now is the time to call for urgent "help" within the system.

Thank you, yes she has great insurance, but they are of course having her stay in the system she works for. I really can't tell you how many times I've said this is 2023, in the United States, and she's worked for this hospital system for I think over 35 years at this point, and this is how this really goes? I thought no way this is really how people are treated after such a diagnosis. I will be on the ball now and figuring out what is going on here. 

 

3 hours ago, RJN said:

Dear Jacob. Although I may not know the US system, I feel confident to state that this is far beyond the pale of what is acceptable in just about any system in the world (and I lived in a lot of so-called developing countries). Hope Tom’s advice will move things to a better place. I am utterly shocked. Wishing your mum and you all the best, R

Thank you, it's good to know that I'm not crazy and her health care providers need to get their things together right now.

 

4 hours ago, Karen_L said:

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

Thank you Karen, it's just she believes she's a bit trapped with this specific healthcare system she works for in the area since that's who her insurance is through. They work with the hillman center apparently though, so we are expecting the care to be on par. Or at least we were. At this point I'm just going to give them a call and explain what's been going on, and see what they think can be done. Thank you for sending it along. 

 

5 hours ago, Tom Galli said:

Jacob,

I can definitely say your struggle to get physicians to pay attention to your mom's disease is definitely not normal. Please call Kristi Griffith at (214) 726-2112. Kristi is a Registered Nurse who works for the LUNGevity Foundation. Tell her I asked you to call her and see if she can move your mom's medical system.

Stay the course.

Tom

Thanks Tom, she did send me a few emails over the last couple weeks. But it's been a bit hard to respond to anyone lately on anything. I'll get that handled tomorrow and make the connection. I knew there was no way this is the norm. 

[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