Can't stop worrying and reading up about lung cancer

[catlady91]

My mum was diagnosed with stage 3B non-small cell squamous cell lung cancer in Feb and underwent chemo and four or five weeks of very intensive radiotherapy. Now since June, she has been having immunotherapy (durvalumab or imfimzi). Mum is doing really well and is very active and in good spirits. I have some days where I feel really depressed and am scared that my mum won't make it long-term. I Google everything about lung cancer and get upset. Statistics on 5 year survival vary for stage 3B from 3- 35%. Also it says online that stage 3B lung cancer can't be cured but the oncologist said that they're aiming to cure my mum. She made it seem like my mum's 5-year survival rate was high. Another oncologist on the team also confirmed that they're still aiming for a cure. The doctors seem to be very positive despite my mum having such an advanced stage and they keep commenting on how well she looks.

Why is it that these different articles online say different things even if they're medical websites? Also can immunotherapy result in long-term remission? I've read that in most cases immunotherapy delays the progression. Even if lung cancer returns can it be successfully treated and go away? My mum doesn't have any mutations as far as I'm concerned and she has 80% PD-L1. 

I can't imagine my mum not being around for a long time. I say that my mum will live to be 102 (she's currently 71)! The future is very scary and my mum has another scan coming up soon? Whenever I search the internet most of the articles say that stage 3 lung cancer isn't treatable and doesn't have a good prognosis but there seem to be a lot of survivors out there.

[catlady91]

If there's been so many advanced in treating lung cancer, why isn't there more information about it on the main cancer websites? Why do they use old statistics?

[GaryG]

catlady91; First congratulations to you and your mum for doing so well. As a newly diagnosed 3b like your mum, I will be delighted, thrilled and happy with those results.

Second your question should have been "since there's been so many advanced in treating lung cance"r and not "If there's been so many advanced in treating lung cancer".

Maybe I am not the most experienced or knowledgeable person on the subject here but I spend countless hours reading and taking notes. The advances are coming so fast and furious due to the discovery of new drugs giving Oncologists and researchers more capabilities to mix and match drugs from different categories for different patients with different stages. In the US alone, 230,000 new people are diagnosed with lung cancer each year alone. Now imagine how many lung cancer patients around the world are diagnosed and treated. Our bodies are made of trillions of cells that act and communicate to perform functions. If you want to learn more about the subject you can read this article: https://www.cancerquest.org/cancer-biology/cell-structure?gclid=Cj0KCQjwu8r4BRCzARIsAA21i_BlsiO6j3J4np7wzlR5_TO9MYBE5bzsz1WGsNEsbx6KOMO17wPGDiIaAv79EALw_wcB.

  Some good news on the way hopefully. I the past oncologists, researchers, pharmaceutical companies all worked alone and never shared their work with anybody else. New rules are underway to record clinical trials in a data base so they are accessible to every body.  New rules also mandate that cancer hospitals and oncologists log their patients, treatment and progress into the same data base accessible to everybody. Since we have trillions of cells each and since it takes one day to compute and compare one single person cells to another (thanks to newer and faster computers. The old ones took a month) hopefully soon the puzzle of why drugs work for one patient and not the other is solved.  

Now back to your question again, it is currently impossible to keep track of the advances and log the correct statistics each day. But once the Data base and  information sharing is complete cancer therapy should become less daunting. That effort by the way is driven by the Federal Government so if you want it to continue contact your rep.

Meanwhile, enjoy the great results you are getting and congratulations to your medical team for putting you on the right path. 

 

[Tom Galli]

Catlady,

Welcome here. I was diagnosed stage IIIB non-small cell squamous cell lung cancer (NSCLC), in other words, the same form of lung cancer as your mother's in February 2004. I'm still alive and if I can live so can your mother.

So, let's talk about lung cancer statistics.  First read this. In the United States, we have a very comprehensive system of reporting lung cancer diagnosis but not a very comprehensive method of reporting death by lung cancer. So, I could be diagnosed with lung cancer in July and recorded in the federal government data base and hit by a bus in August and my death would not be reported to the lung cancer data base. Survivor statistics are a good faith effort to predict survival but the prediction is extremely difficult and now, perhaps most importantly, the prediction is based on data 3 to 5 years old. So many new methods of treatment have been introduced for lung cancer in the last 3 years that the survival statistics are just flat inaccurate.

Can immunotherapy result in long-term remission you ask? First some vocabulary. Remission is a state where lung cancer stops growing or spreading but doctors cannot explain the halt. All cancer may go into remission with or without treatment so we don't use the word. We don't use the word cure either because lung cancer is a very persistent disease, often recurring many times after successful treatment.  In my treatment history, I had 4 recurrences. We use the term no evidence of disease or NED and that is the state we hope to attain through treatment. Can immunotherapy cause a NED state? Absolutely, positively, and most assuredly, it can and with your mom's PD-L1 level, I expect good things.

You used the term mutations. This term is mostly used in conjunction with targeted therapy associated with adenocarcinoma, another form of NSCLC. With squamous cell, there are no mutations and no targeted therapy but immunotherapy is a different deal and is effective, very effective, against squamous cell. I notice you live in the UK. Our medical systems are different but I note your mom had moved right to immunotherapy after fractional radiation and is not receiving conventional chemotherapy. This is the US Standard of Care for squamous cell NSCLC not surgically treated given a high expression of PD-L1. So you mother is receiving top notch treatment and there is every reason to believe the treatment will work. We hope it does.

More questions? This is the place.

Stay the course.

Tom

[Lisa Haines]

CatLady,

  One thing that was advised to me very early on was to not rely on much of the information found online doing Google searches.  Dr. Google as many of us refer to is in the cancer world is not a very reliable or updated source of information.  Another thing is that I never allowed any of the statistic to really bother me, I knew they were not great for a Stage IV patient, but I tried to keep a very upbeat and determined attitude and felt that not matter what I was going to beat this and continue to hope every day that a cure will come for me in my lifetime, or if not a "cure" more treatments options, so that I can continue to treat this and Live life.  More and more Cancer Survivors are being treated like other with a chronic long term illness.  As long as we have options and have a good response, that's what matters most to me.    I have never asked for a long term prognosis and never will and quite honestly I don't then any doctor should really ever put a time frame on any life.  There is simply no way to know for certain exactly how each person will react to treatment and how well it may work for them.   

  If you want to find the more reliable informative, your'e much better off in one of the large and well established groups Ike LUNGevity.   I have learned far more from LUNGevity the another website and I'm very thankful and grateful for all the time and effort they put forth in trying to provide us with the most updated and current information relative to Lung Cancer.  One of your other best sources of information should be from your (or in your care, your Mum's) oncology team.   I find it vital to have a team I am confident in and one that I can openly and effectively community with.  I've been through the heartache of losing a beloved "Oncologist" who I adore and feel was my life saver.   She left my area for a wonderful new career opportunity and after she left I felt lost for well over a year.  I had an Oncologist in the same center take over my case, but I never liked him or feel I could easily communicate with him, even though he was not to be brilliant and had been practicing much longer than my first Oncologist.  I then went through two more "consults" to purse finding a new team, but because I also adored all the other staff and my hospital, it was a huge decision to ahve to leave ALL of them and go somewhere else.  In the end, my hospital had by then hired two new Onc's and after getting to now each of them over a few months, I ended up moving my care to one of the newer docs but was able to stay in the same hospital with the same nurses and other staff that I have now become very comfortable with.  I'm very happy again, but I know the struggle when you are now confident in your team an that's huge.  Luckily because I had such a close relationship with my first Onc, we still keep in touch via email and I can still go to her with any questions or concerns.  I feel she is the one that picked the best treatment plan for me and it's because of her that I'm still here 5 1/2 years later and Stable with Stage IV NSCLC.

  As for Immunotherapy for me it was my life saver and I think in my case and with my cancer it's been the best possible treament.  I started with Chemo and that was the standard at the time of my diagnosed in early 2015.  Back then the Immunotherpay drugs were still only in trails but were also showing good results.   I ended up having major progression my first year and by then they had been FDA approved, but were still brand new and it was hard to find a lot of info out them on them and even from doctors, because most had not tried them yet.  My Onc wanted to put me on Opdivo was was FDA approved as a second line regardless of PDL1 (which in my case had not been tested, because it was not a test done in early 2015).  She could have tried Keytruda, but that would have required a new biopsy and more time, so she felt the Opdivo was the best and fastest option and with and with an agressively growing tumor we needed to start ASAP.   And it was very frightened and the side effects all scared me even more, so much so that I at one point decided to decline it and went to see her to discuss other options, but after a long talk and follow up with my PCP, I gave in and went with her decision.    I was the VERY first patient at my hospital and I'm currently the longest survivor.   All we could go on was what we knew from Clinical trials and of course, we learn more and more every day still.  Immunotherpay is still relatively new, but when it does work it's amazing and I am certain if I had not taken it I would not be here today, so I think in my case it was not a drug that prolonged progression, it shrank my tumor dramatically in a matter of months, despite side effects.  And after only nine months I was Stable and doing well and have been ever since without further treatment. 

As for long term stability, I'm a great example of someone who is doing very well.   I have been off Opdivo now for almost four years and have remained stable all this time and have not needed or pursed any other treatment.  I have scans every six months (Currently) and am due again in August.   According to my Oncolgist and from the latest trial updates, those who have had my type of response continue to do well and our long term outlook is very positive, they feel we will remain stable for many more years and that makes me very happy.   

I hope your Mum does with with her treatments and also will soon be stable or NED.  I really don't even worry so much about what "term" they want to give me.  All that matters is that my cancer is under control, it's not growing or changing and that I'm doing pretty darn well considering when this all started I was in a hospital with a brain tumor, that turned out to be a met from Stage IV Cancer and I also had a pulmonary embolism.  ALL came on with no warning until two days of of neuro changes I thought was sudden vertigo.  ALL this also was only four weeks after having hip surgery and my chest xrays during and after surgery, as well as the pre op testing never showed any indication of Lung Cancer???

Please take care and try as best you can not to let this overwhelm you...there truly are many living long lives even with Stage IV Lung Cancer -- the advances in treatment continue each day and now we need to spread the world that we are the leading cancer killer and the we need more funding and research...

 

   

 

  

[catlady91]

Thank you for your replies everyone. Lisa your story is incredible and inspiring as is yours Tom. Gary I wish you all the best in your treatment and hope you will do well. 

Tom I just wanted to ask whether immunotherapy can reduce the likelihood of recurrence. If recurrence does occur, can it be easily treated and what is the treatment path for that. Do you get given a different immunotherapy? I know that you were treated before immunotherapy was used. What was used to treat your recurrences and what got it to stop?  

Monica 

[catlady91]

Also Lisa how long have you been stable for? 

[MarieE]

14 hours ago, Tom Galli said:

With squamous cell, there are no mutations and no targeted therapy but immunotherapy is a different deal and is effective, very effective, against squamous cell.

Tom,

I'm confused about your statement. My husband has squamous cell NSCLC and is taking a targeted drug (Tabrecta) since he has a MET mutation.

[Tom Galli]

MarieE,

I may have been wrong. Apparently METex14 gene marker can occur in squamous cell. Here is the study that shows a very small percentage of those with MET3x14 genetic markers also have squamous cell lung cancer.

I do hope Tabrecta works for him.

Stay the course.

Tom

[MarieE]

Thanks, Tom. Yes, from what I have read previously, it is a very small percentage.

Unfortunately, my husband is having a tough time tolerating the Tabrecta. We'll need to see what the oncologist recommends for next steps.

[catlady91]

4 hours ago, catlady91 said:

Tom I just wanted to ask whether immunotherapy can reduce the likelihood of recurrence. If recurrence does occur, can it be easily treated and what is the treatment path for that. Do you get given a different immunotherapy? I know that you were treated before immunotherapy was used. What was used to treat your recurrences and what got it to stop?  

Monica 

Hey Tom sorry to be a bother. Would you be able to answer my questions about immunotherapy and likelihood of recurrence? Thanks.

[Tom Galli]

Catlady,

I can’t answer your question about immunotherapy and impact on recurrence with precision. I don’t think there is enough data to generate a statistical basis for immunotherapy’s effect in recurrence. It hasn’t been around that long. 

But in physiological sense, immunotherapy  drugs paint cancer cells as foreign and thus don’t allow cancer to hang out as normal cells. Once a foreign cell is identified it remains indetified on recurrence. There is however one way pathogens avoid immune system recognition—by mutation. The annual flu is an example of how a slight mutation can cause it to be ignored by the immune system. So immunotherapy may destroy most all cancer cells but if one mutates quickly, it might survive and multiply. 

Some targeted therapy remedies stop working because of cancer mutation. In some of these treatments, mutation is expected and alternate therapies have been developed to attack the mutating cancer. I don’t think immunotherapy has been around long enough to develop this functionality. 

Be mindful, I am not a physician. I just read a lot about lung cancer. Your best answer will come from your treatment physician. 

Stay the course. 

Tom

[Lisa Haines]

Monica,

  I have now been stable for almost 4 full years without any further treatment.  My last Nivo Infusion was on 8/31/2016.   My next CT Scan will be on August 3rd and I'l see my Oncologist on the 5th for all my results.  

[catlady91]

Thanks Tom; I appreciate any knowledge. My mum's doctor who is in charge of her immunotherapy doesn't know a lot and isn't able to answer my mum's questions. I guess it's like you said; it's because immunotherapy hasn't been around for that long. After all most cancer statistics are derived from very old data. I really hope that immunotherapy will help prevent recurrence. You explained it perfectly with the flu analogy. It makes sense now. I guess it's how the flu jab is there to protect against most strains especially for the vulnerable and elderly. 

Lisa that's so fantastic to hear! May your good health long continue. Good luck for your scan, but I'm sure everything will be fine. My mum has another scan at the end of July. The last scan in May showed that the tumour had shrunk by half which the oncologist said was excellent news, so I hope that good things will keep coming. My mum and I have had a lot of bad luck in our lives, but hopefully our luck will change.

[Dragonmew]

Hi Catlady,

I feel for you.  My mom just diagnosed in February this year due to a fracture.  Since then, I researched and googled and got so sad by what I have read...My mom is at stage IV with the very rare mutation of Met 14 skipping. Before the result of biopsy, the oncologist was hoping her mutation to be EGFR, the most common one with many choices of targeted drugs.  My mom is currently on Capmatinib and she seems well with it, but I can’t stop thinking what’s the next?  What will be 2nd or 3rd line treatment once the cancer cell stops responding to it?  I could Only find very few information regarding this mutation From online.  Like you, I thought my mom would live around 100 ( now she’s only 68). She was such a healthy person before that fracture.  I can’t imagine my life without her...