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Sandyk

Just diagnosed

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My 59 year old wife was diagnosed 2 weeks ago w stage 4 long cancer. Perfect health, non smoker and no history of any type of cancer in her family. It does not appear that she will be a candidate for any targeted therapies though we do have one genetic test coming back in a week. The plan is to start chemo and immunotherapy in two weeks. The denial and the shock seem to be wearing off and have been replaced by a little bit of numbness. We do remain hopeful and optimistic though it is difficult to ignore the numbers. I am wondering how people in a similar situation or coping. It is certainly very difficult for us.

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Sandy,

Welcome here.

OK, I understand Stage 4 but what type of lung cancer (Small Cell or Non Small Cell) and if non small cell, what subtype (large cell, adenocarcinoma or squamous cell).  Revealing this information will enable those of us with a like-type to tell you about our experience with treatment.

Do ignore the numbers, for two reasons. First, they are based on a 5 year running analysis and many new therapies for lung cancer have been introduced in the last 2 to 3 years so these results are not baked into the data.  Second, many input variables to the statistical model are uncontrolled (and will always be uncontrolled) and therefore trying to determine the validity of the data for a single individual is near impossible.  Here is more information on this second reason. I notice your wife is receiving immunotherapy as first line (the first treatment) standard of care (a national standard for all types of a particular flavor of lung cancer), and that her immunotherapy therapy is in combination with conventional chemotherapy.  Indeed, this is a relatively new treatment modality and is yielding very good results.

How does one cope? Oh my, that is a very good question. My wife and I coped by learning everything we could about my disease and the knowledge we acquired was very instrumental in my survival.  With new treatments being introduced almost every month, one needs to be smart enough to ask the "terribly perceptive question." My wife's question saved my life. So coping by learning might be something you might want to invest in.  I'd start here and get familiar with new vocabulary, then I'd move to here and start reading into the disease paying particular attention to your wife's type and subtype. And, a lot of folks seem to find this summary of my lessons learned helpful.

Lung cancer is difficult, without a doubt. But thankfully, new treatments are having an effect as many here will attest.  Let us know details about your wife's lung cancer and type of drugs she is receiving, then will provide our specific insight.

Stay the course.

Tom

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Hi Sandy, 

Welcome.  My story sounds just like you’re wife’s- I’m 51, this diagnosis hit us from out of nowhere in September last year. The devastation was indescribable however somewhere along the line, the battle rattle kicked in and now we’re in a new normal managing pretty well.  Each day gets better. 

A word about the molecular testing from our experience- it’s important to have a full panel done.  Initially I tested PDL-1 zero, negative for EGFR and Ros-1 and indeterminate for ALK.  The port went in, received the triple combo chemo, geared up for round 2, then the full panel came back positive for ALK.  There are two ALK tests.   Sometimes physicians are reluctant to order the full panel as insurance coverage can be an issue due to cost. 

Nevertheless, unfortunately your wife’s circumstances are becoming increasingly more common. Nearly everyone under the age of 60 is diagnosed at Stage IV, particularly healthy people.  Your wife’s health will play a significant advantage. A Stage IV non mutant friend of mine has had 72 chemo (Altima/Keytrudra) infusions, Living her life doing really well.  

There’s a ton of resources out there, Lorenzo Cohen’s Anti Cancer Living tells us how to develop a holistic treatment plan, stuff the doctors don’t know or understand.  

For the first time in decades, physicians are going into oncology to specialize in LC as the research is rapidly evolving. 

Let us know how we can support you and your wife.  Here in this forum, you will find the real experts.. 

Michelle

 

 

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Thank you for replying so quick Michelle.. not sure if we had a full panel done or not but in reading your comments there’s a good chance they did not run a whole panel . We did do an additional blood test that gets similar information from a company called Guardant health. It sounds like a lot of  rounds of chemo you went through. Is it really a lot or is that pretty standard? Is it safe to have so many rounds? I live in Southern California, orange county. Not sure how to contact a support group to go to as the only one I found is through my local hospital. That one is small with mostly older people that meets one time per month. Very nice people but I don’t think it’s the perfect fit for us. Makes me feel a tiny bit better just to get your reply. Thanks again

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Hi again Sandy-

My molecular studies were sent to Foundation One in Boston MA.  It took almost a month for the test results to come back. 

If you’re wife doesn’t get a full panel find out why not. 

I received one round of IV combination of Carboplatinum/Alimta/Keytruda.  Initially the treatment plan called for four rounds of this triple combo every three weeks then transition to maintenance Alimta/Keytruda every three weeks which is well tolerated and effective. It’s pretty much the standard of care when there are   no mutations.   I friend of mine is on infusion #72 of Alimta doing very well.   Today’s chemo can be well tolerated.  When we got the diagnosis, initially I seriously considered not doing the chemo route.  It was all such a fog, I don’t even remember why I changed my mind.  

As for the support group, similar experience here in KC.  We did not have a LC support group at all anywhere in town.  Once I had my wits about me, I built my own.  I think it’s perfectly reasonable to ask the clinic social workers to consider developing a different type of support group.  others may have had a similar experience and are likely pretty isolated.  I started this group with 2 people in February, now we’re up to 7.   Doesn’t hurt to ask.  

On the practical side, not sure if your wife is working. If so, you might want to know that she is automatically eligible for Social Security Disability (if there are enough work credits).  My first hospital social worker was pretty much worthless & I learned all about disability on my own.  

The Bonnie J Addairo Foundation has a wonderful introductory book for understanding LC.  It’s in its 4th edition, the best resource available in my opinion. Located in the Bay Area     They just changed their name to GO2FOUNDATION.

You may also want to check out their Lung Cancer Living Room on YouTube where National experts present the third Tuesday of each month. 

The emotional roller coaster is a ride none of us wants to take, go easy on yourself and give yourself permission process all the emotion.  

Please keep us posted as you can

Michelle

 

 

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Tom

thanks for the info.  every little bit really does help.  I"m checking into weather or not they ordered a full panel or not.  I'll also see about the exact type of Non small cell LC she has.  One day at a time I guess.

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I’m sorry to hear about your wife’s diagnosis SandyK.  You’ve gotten some great guidance and advice from Michelle and Tom.  Ignore the numbers on the internet (they are dated), educate yourself and definitely get good genetic testing done.  Not all panels are created equal.  Targeted therapies for specific types of lung cancer can be more affective.  Sometimes this disease requires one hour at a time.  Your wife is lucky to have such a great support system.  Hang in there.  

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thanks Curt.  we should have the tests back from the biopsy in a week and will then be able to determine what direction to go with treatment.  How long ago were you diagnosed?

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I was diagnosed a few months ago.  I went through a year of scans following a lung nodule that was discovered by accident when I got an abdominal scan for something else.  I was lucky to be able to have surgery as a treatment and haven’t required any follow up treatment.  Just semi annual scans.  I have the unfortunate experience of having had family members with lung cancer diagnosis.  Five of my fathers nine siblings have been diagnosed, my father included.  That was a while back and the treatments available today were not available to him.  I’m glad they exist now but it hurts to know that just a few years could have made such a big difference on his prognosis.  Stage IV lung cancer is still a tough disease to fight but it’s not as insurmountable as it was when he was diagnosed.  

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Hi SandyK,

I was diagnosed one month before I turned age 60 and my situation was like your wife's in that I maintained a healthy lifestyle, worked out regularly, have no family history of this, etc.

My diagnosis was Stage IV NSCLC Mucionus Adenocarcinoma.(KRAS mutation)- I had my lower left lung lobe removed using VATS in Sept 2017 and then my upper Right lung lobe removed with an open thoracotomy in October 2017. This was followed by chemo. There was a brief period of NED, and then there was evidence of recurrence in the lower right lobe. I have been taking part in a Phase Ib Clinical trial that uses a personal cancer vaccine and an immunotherapy drug (Tecentriq)..there are lots of options available and I agree what others have said, "knowledge is power." Try to education yourselves as much as possible so that you know what questions to ask. I'm happy to answer any questions once you know more of the specifics regarding typed of cancer. 

One step at a time, and remember you have this entire network of supporters on this forum ready to help and/or make suggestions.

 

Best, 

Ro

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Ro

sounds like it's been a tough couple years but you're still moving forward.  The whole clinical trial world is pretty exciting and I really hope it's a huge help to you.  We start our treatment in about 10 days.  the waiting has been tough as my wife seems to be doing worse over the last week.  She has non small cell stage 4 LC.  Not sure of the exact type but we'll have the tests back from a company called Caris in a few days.  

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It appears there is a small mass in her elbow as well (both in the bone and soft tissue)  this is in addition to the original tumor in one lung and the 5-6 lymph nodes in her lungs and shoulder.  Will the mass in the elbow change the treatment she can receive?  Treatment will begin in about a week or so pending the last genetic testing results from Caris.

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SandyK,

I bet they use precision radiation (IMRT) to fry the tumor in the elbow (bone & soft tissue). That should be a piece of cake and should not effect any future treatment of lung or lymph nodes. A radiation oncologist performs precision radiation treatment so book a consult with one to get the ball rolling. 

Hope lab results show up fast. 

Stay the course. 

Tom

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so, quick question.  My wife has a HER2 and Exon 20 mutation that there is no targeted therapy for.  one of the doctors is recommending we go the route of Chemo and Imunotherapy.  two other doctors are recommending we go into a clinical trial instead that targets those mutations.  the drug is called TAK-788 and they are in phase 2 now.  Any thoughts on the clinical trial route or this drug?

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Yes. I do. Given your wife’s presentation I was betting she had a mutation (like me).  I think the best shot mutants have is through targeted therapy.  Recent trials have resulted in excelerated FDA approval.  

Going the chemoimmuno route could exclude your wife from participating in future clinical trials. Ask the doctor about that. 

Targeted therapy is much better tolerated, works very quickly with a high quality of life. Chemo can always be a back up plan. 

Ask about the potential side effects & to review the preliminary trial data before you make the final decision. 

Michelle

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So now they are telling us that we do not really qualify for this clinical trial.  while she does have the exon-20 and HER-2 mutation she does not have the EGFR to qualify.  We are now being told that the route is chemotherapy and imunotherapy.  The only other suggestion would be to use Afatninib instead of the chemo.  It's not FDA approved but apparently works well about 50% of the time.  Any thoughts?

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50% in the cancer world is actually a pretty decent response rate, the interesting issue about inhibitors is if they are going to be effective, the doc would know really quickly. 

About a week after I started my inhibitor, there was a trip to the ED for fevers of unknown origin. The ED staff didn’t know what to do with me so they ordered a CT scan. In 7 days, the tumor was already shrinking. 

My question would be is if your wife starts the inhibitor as a first line, at what point would the first monitoring check point be for evaluation? 

I wouldn’t be concerned about FDA approval. I’ve been watching the Bonnie J Addairo Lung Cancer Living Rooms for about six months. One of Bonnie’s frustrations in advancing lung cancer treatment is there are probably other drugs which could be “repurposed” for lung cancer treatment.  

Today’s therapies are designed to be personalized, since the mutant cancers are occurring at a cellular level, organ origination is becoming less of a focus.

The other question I would ask is if they could retest for EGFR. It’s unusual to see your wife’s mutations without it.

You might also want to post in the EGFR Facebook group to see if anyone else has had that experience or call the Bonnie J Addario Foundation directly as they have access to the leading mutant researchers (like Wakelee, Shaw, Carbone and Camidge) 

Keep digging it’s so critical to get the treatment plan right the first time.  You’re doing a great job! 

Michelle

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Sandyk,

Sorry that you need to be here, but glad you found us.  As you can tell this is a great group with vast experience so when they share, the info is really valuable.  I, like Curt, had an "accidental diagnosis" after a CT Scan for a kidney stone.  I too had a lobectomy from which I am still recovering (and well, I might add).  But, on the subject of getting the diagnosis and the (sometimes) interminable waiting; it is a terrible thing to hear about yourself or a loved one and when you're waiting, hours can feel like weeks, adding to the anxiety, uncertainty and despair.

We've all been through it and you hear strong voices telling you about learning all they could, preparing for the fight and holding onto whatever faith you choose to follow.  I always give the same coaching (that I received from so many of my forum family); stay in the moment, don't catastrophize the future (one of my special skills), enjoy everyday that you and your lovely wife have (this is good for both of you and her immune system), listen carefully to the doctors, take notes and come prepared with all those questions that seem to find us at 3am when we're lying in bed.  Finally, don't hesitate to get a second opinion and advocate in a healthy, assertive manner for your wife's treatment and ongoing care.  

Please keep us posted and ask anything you'd like here.  As you can tell this place is a great source of information and support.

Lou

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