BridgetO

Indeed Tom, there is a big uptick where I live and many people are reporting being sick again. I am getting more careful again though I never unmasked in general but started to do things with some risk like unmasking to swim at a public pool, eating on the side indoors at a (very well ventilated) friends house and downgrading N95 mask from head loops to ear loops. Tightening all that now for the Fall. My husband just had another health scare and we certainly are of the philosophy that masking may at times be socially isolating and occasionally inconvenient but surviving and being as healthy as possible so our little boy is not orphaned is all what matters. Stay safe.

This is interesting that this topic was recently refreshed.
We are entering a new COVID season, complicated by the emergence of RSV (Respiratory Syncytial Virus) and of course the flu. I will get all the shots and boosters. I'm also seeing masking and social distancing as topics of discussion on social media. Yes, I lost about 2 years of social engagement by isolating myself during the pandemic but I am alive. I am planning to isolate again as my strategy for avoiding infection because of my very marginal pulmonary capacity.
I can only control what I do and self-isolation is inconvenient and boring but I am alive to be inconvenienced!
Stay the course.
Tom

Yep, no concerts for me this season either!

Ummm, sorry, Doc, but NO. Take a look at this, @Karen62, and see if you'd like to look for another doctor: https://www.mycancergenome.org/content/alteration/egfr-s768i/
Karen

Thanks so much for your replies.  Before I started treatment and was so frustrated/scared at the length of time it was taking to actually get started with treatment, I contacted the lung cancer center at Atrium Baptist Hospital in Winston Salem, immediately got an appointment there and got established with a great doctor there.  Since he was recommending starting out with chemo and radiation, and the radiation would be given every day, he arranged with my local cancer centers to immediately begin treatment here so that I would not have to drive from Asheville to Winston Salem every day.  Once I am through with these, he will become my primary doctor again and I will get all future treatments, including the immunotherapy, through him.  I feel very confident and comfortable with going there and will have access to a broader range of treatment options and also clinical trials if needed.  I would like to acknowledge that I have been treated very well at the local centers I am currently going to, I just felt I needed to strongly advocate for myself on not just the length of time everything was taking here but also looking ahead to where I might have the most options for future treatments.
I meet with my chemo doctor today and will discuss the possibility of switching to a different chemo, even though I only have 2 more treatments scheduled.  Of all the many side effects I have experienced from the chemo and radiation, most are tolerable or handled well with other medications.  But this persistent cough has not been manageable and I'm not sure I can handle 2 or 3 more weeks of it, the episodes are just so bad.  RJN, Thanks for the suggestion of the syrup with codeine, I will also ask him about that.
LouT, thank you for listing more resources, I will definitely check those out, and I am glad you said to stay away from looking at statistics on Google.  Of course, that wàs one of the first things I did when I received my diagnosis, wanted to know exactly what I was facing, but got confusing and contradictory info and I also came to realize everyone is different and may respond differently to treatment.  So I will remain as informed as I can and try to make treatment choices based on my doctor's opinion as well as what I feel is right for me.
I am so grateful for this forum and having a place to share.
 
 
 

Hello Elki. I'm sorry to hear about your situation.  Do hold on to hope. Live now, because you never know what will come. Statistics about survival are based on large numbers of people, and you are a case of one. My father-in-law had a type of non-Hodgkins lymphoma and was told that noone had survived with it for more than 6 months. He got into a clinical trial and he lived about 20 years longer. Have you checked to see if there are any trials you might be eligible for? I don't know what d system is for that in England, but maybe someone on here does. 
Also, could you get a second opinion? My lung cancer was Stage 1 and the treatment was pretty cut and dried. However,  I had a prior gynecologic cancer, Stage 3 of a rare and aggressive type. My medical oncologist actually wrote in my chart that my prognosis was "dismal". I sought out a second opinion, and that doctor recommended some additional chemo. I belong to a health plan that only pays for treatment by in-group providers and I had to pay out-of-pocket for the second (out of group) opinion. My in-group onc agreed to follow the second opinion doctors recommendation. I am now 12 years out from that diagnosis and have no evidence of disease. 
Hang in there, Elki . I hope for all the best for you.

NED is definitely our best friend. I hope he's visiting you permanently, Rikke.

NED is definitely our best friend. I hope he's visiting you permanently, Rikke.

Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist  was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis".  It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.
So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.
All my best,
Bridget O

Ooops - sorry - just realise you have been on here a while….
 
Hi Johnny, welcome to the forum. Sorry to hear about your diagnosis. Of course no-one wants to be here, but plenty of good advice as you move along the treatment.
Seems like you are already trying to get your head around your options. I know a couple of folks on here will no doubt offer you some general guidance, so just a few things your post mentioned. 
1. It is frankly a very very outdated way of looking at LC as smoking or genetic, and I am quite gobsmacked that an oncologist will use such language. I can only hope the doctor in question tried to make things simpler, but IMHO this is an unhelpful and largely irrelevant distinction. While it is true that certain lung cancer types and certain mutations favour smokers, this isn’t an either or. Regardless of the cause, it is the mutations and PDL that determine whether targeted therapy (tablets) or immunotherapy are likely to work. My cancer is likely linked to smoking, but I have been on immunotherapy and my next line will likely be a KRAS inhibitor (a tablet). Reversely, I have never-smoking LC buddies where chemo was the only option. 
 
Another thing you should ask about is radiotherapy. There is increasing evidence that a combination of systemic treatment and radiotherapy may be a winning combo.
2. Re opiods, I am with you and would rather stay clear. When I had some pain early in my treatment, I found that codeine and paracetemol combined did the trick. While codeine is in priniciple an opioid, it is much weaker, and not linked to significant risk of addiction. Still a bit of issues with constipation, but not as bad as the stronger stuff…
Finally, do not look at statistics. They are completely out of date and tells you very little about the current treatment environment. Many of us are alive and living a fairly normal life years and even decades after diagnosis. 
 
Keep us posted,
Rikke

Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer.
Some things to know, though:  sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register.  Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray.
If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for!
Bridget O

JuneK and Sally,
Hang in there, both of you!  It's definitely worth looking for clinical trials. You're in my thoughts.
 

Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist  was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis".  It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.
So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.
All my best,
Bridget O

JuneK and Sally,
Hang in there, both of you!  It's definitely worth looking for clinical trials. You're in my thoughts.
 

Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer.
Some things to know, though:  sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register.  Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray.
If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for!
Bridget O

Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist  was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis".  It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.
So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.
All my best,
Bridget O

Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer.
Some things to know, though:  sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register.  Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray.
If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for!
Bridget O

JuneK and Sally,
Hang in there, both of you!  It's definitely worth looking for clinical trials. You're in my thoughts.
 

Hello --- thank you for your feedback and thoughts.  I had surgery to remove my left adrenal gland and a partial to my right adrenal gland.  Focused radiation was a second alternative to the right adrenal gland; however, one stop shop treatment was the objective.  The results of the surgery went well in that both deposits were successfully removed, and I do not have to take any daily steroid supplement.  The next step going forward is continued control.  

Hi Beth,
Sorry you need to be here, but glad you found us.  Sometimes the diagnostic process for this disease alone can make one crazy.  It needs to be exacting, definitive, and accurate.  I can tell you know that while CT and PET Scans have a place in diagnosis the definitive diagnosis is made via a biopsy.  So shadows, nodules, and other abnormalities could be indicative of cancer the biopsy is the only definitive tool to determine malignancy, and other factors (i.e., genetic markers).  Please take a look at "Navigating Your Diagnosis" and you'll see the difference between screening, markers, and definitive diagnosis.  You need to get to the biopsy stage for a true diagnosis.  Along with that you also want to know what genetic markers may be impacting the findings.  Once you have that data settled you will begin to look at what treatments are available to help your Grandmother.  So while it may be possible or even probable that it is cancer we don't pull the trigger on anything until it's been diagnosed.

I'm not fully familiar with the UK health system but others here are and I'm sure that you'll hear from them soon.  In the meantime please keep us updated and ask any other questions you may have.
Lou

Not yet but I'm working towards it! I've increased my fat intake by 40% up to this point. So far, so good
(I have 2 more weeks before I can go all out on fat content! Then Carl's Jr......look out!)

I was getting ready to post a very similar post. I had very good results from the chemo radiation. Tumor shrunk to almost nothing at end of April and no progression   Started on durvalumab in May. After three months a Ct scan showed lots f progression. A follow up PET scan indicated many lymph nodes, mass in right lung and spot on liver and spleen cyst now lighting up. Now on gemzar and carboplatin and basically told OS average 8-12 months. Stunned.  I have an appointment at U of Michigan this week and hope there is some other option. I still feel good, except emotionally.   

In researching clinical trials, I came upon some interesting info regarding BMF-219. It has shown great results for leukemia, and now they are looking at trials for lung cancers with any KRAS mutation. This is hopeful for me as I have one of the lesser known types - KRAS A146V.
Here are a couple of links I hope some will find interesting:
https://www.targetedonc.com/view/treatment-with-novel-kras-inhibitor-commences-in-phase-1-1b-study-covalent-10
https://aacrjournals.org/cancerres/article/82/12_Supplement/2665/699885/Abstract-2665-Irreversible-menin-inhibitor-BMF-219
Best to all, June

Hi Sarah, Sometimes surgeries are done on stage 3 lung cancers but usually after the tumor has been shrunk by chemo. I do agree with Tom and Karen about getting a radiologist consult and also other opinions . 
Two other things: If you decide to take time off to care for your mom after surgery, 3 to 4 months might not be necessary. I had a lobectomy and lymph node removal by VATS (video assisted thoracic surgery) for a stage 1 lung adenocarcinoma at age 71 and my recovery was pretty fast. I was released from the hospital the day after surgery (with a chest tube still in) and was taking short walks outside the next day. I could have taken care of myself after 4 or 5 days with  two  exceptions :needing help changing dressings on my chest tube site until the tube came out in 10 days and being unable to lift anything heavy (over 15 pounds, I think.) Of course I didn't have the anesthesia issue your mom has had.  Nor did I have metastases in my mediastinal nodes, but 27 of them were removed and tested. But your mom's recovery might be shorter than you expect.
I especially agree with Karen about seeking some advice or help for yourself about whether taking the extended time off work  to be sole caregiver for your mom is in your, or her, best interests. If your mom has  surgery and needs long term caregiving, a social worker could possibly help your mom (and you) figure out other options.
I had some issues  with my  own mom over caregiving, so I know it can be hard to set limits. I, too, am an only child. I lived at a distance (several hours by air) from her, and there were no family members in her area that would provide much besides brief visits. My mom was a survivor of two advanced cancers, but the precipitating issue was that she broke her hip. I went down to be caregiver, or as I preferred to say, to get her back on her feet. Fortunately I had a lot of sick leave accrued at my job and my employer allowed me to use it for Family Medical Leave. So I took 12 weeks off. In the first several , it looked unclear that she was wanting to get back on her feet. She resisted her physical therapy and wanted to be waited on instead of doing what she could for herself. I sympathized and knew she had pain, but I also knew that the prognosis was poor for older people with broken hips, especially if they didn't get on their feet quickly. So I 'got tough" and told her that if she wanted to get to be able to care for herself I was there for her, but if not, she could decide to go to a nursing home. She did get more active in her own recovery and was able to be alone, with some housekeeping help, when I left in 12 weeks.  If I had not had the paid time off, I wouldn't have taken that much time. I couldn't have afforded to leave my job, and additionally, the 12 weeks of caregiving pushed me to my emotional limits. 
All my best to you and your mom, and be sure to take care of yourself, too.

Hi Sarah, Sometimes surgeries are done on stage 3 lung cancers but usually after the tumor has been shrunk by chemo. I do agree with Tom and Karen about getting a radiologist consult and also other opinions . 
Two other things: If you decide to take time off to care for your mom after surgery, 3 to 4 months might not be necessary. I had a lobectomy and lymph node removal by VATS (video assisted thoracic surgery) for a stage 1 lung adenocarcinoma at age 71 and my recovery was pretty fast. I was released from the hospital the day after surgery (with a chest tube still in) and was taking short walks outside the next day. I could have taken care of myself after 4 or 5 days with  two  exceptions :needing help changing dressings on my chest tube site until the tube came out in 10 days and being unable to lift anything heavy (over 15 pounds, I think.) Of course I didn't have the anesthesia issue your mom has had.  Nor did I have metastases in my mediastinal nodes, but 27 of them were removed and tested. But your mom's recovery might be shorter than you expect.
I especially agree with Karen about seeking some advice or help for yourself about whether taking the extended time off work  to be sole caregiver for your mom is in your, or her, best interests. If your mom has  surgery and needs long term caregiving, a social worker could possibly help your mom (and you) figure out other options.
I had some issues  with my  own mom over caregiving, so I know it can be hard to set limits. I, too, am an only child. I lived at a distance (several hours by air) from her, and there were no family members in her area that would provide much besides brief visits. My mom was a survivor of two advanced cancers, but the precipitating issue was that she broke her hip. I went down to be caregiver, or as I preferred to say, to get her back on her feet. Fortunately I had a lot of sick leave accrued at my job and my employer allowed me to use it for Family Medical Leave. So I took 12 weeks off. In the first several , it looked unclear that she was wanting to get back on her feet. She resisted her physical therapy and wanted to be waited on instead of doing what she could for herself. I sympathized and knew she had pain, but I also knew that the prognosis was poor for older people with broken hips, especially if they didn't get on their feet quickly. So I 'got tough" and told her that if she wanted to get to be able to care for herself I was there for her, but if not, she could decide to go to a nursing home. She did get more active in her own recovery and was able to be alone, with some housekeeping help, when I left in 12 weeks.  If I had not had the paid time off, I wouldn't have taken that much time. I couldn't have afforded to leave my job, and additionally, the 12 weeks of caregiving pushed me to my emotional limits. 
All my best to you and your mom, and be sure to take care of yourself, too.