Introduction

[KF1]

Hi my name is Kevin.  My wife Dale (69) was diagnosed with NSCLC adenocarcinoma in the past two weeks.  First symptoms were neurological. We were devastated when told by the ER doc that she had metastatic brain cancer.  Further work up indicated lung cancer.  Had a PEt scan last Monday and currently waiting on results from bio marker study.  We have a meeting with oncologist this Thursday.  She just completed radiation therapy for brain lesions.  

Glad I found this forum.

[Tom Galli]

Kevin,

Welcome here!

First some hope: I was diagnosed with Stage IIIB NSCLC in February 2004. I had every form of treatment except immunotherapy and every treatment save the last failed. But, if I can live, so can your wife. 

Immunotherapy and targeted therapy as systemic treatment methods are game changers in lung cancer treatment, and biomarker results should point to one or both as suitable methods. Many subtypes of adenocarcinoma respond well to both. The cranial precision radiation should be effective. My last treatment, the one that worked, was precision radiation (CyberKnife--a form of SBRT) to a reluctant tumor in my remaining lung. However, my systemic therapy (chemotherapy) was iterations of Taxol and Carboplatin, almost the only formulations available at that time. Thankfully systemic therapy treatments and outcomes have really advanced. One of our members, Lisa Haines, had the same diagnostic path as your wife. Brain metastasis symptoms were her first indication, then she had precision cranial radiation, and following immunotherapy. Now she is NED--no evidence of disease!

One suggestion for your forthcoming oncology consultation. If infused chemotherapy is a proposed treatment plan, I suggest (strongly) you request a port to eliminate the storm of IV assaults on your wife. Doubtless, you'll have more questions as a treatment plan is devised and this is a good place for answers. While we are not physicians, we have unparalleled experience as lung cancer patients and survivors.

Stay the course.

Tom

[Justin1970]

Hi Kevin 

I'm sorry to here about your wife,try not to get to stressed and worried until you get all the results back and speak to the oncologist, I was diagnosed with lung cancer last August and had chemotherapy and radiotherapy, I had a seizure and the Dr's found 2 brain mets about 10 weeks ago I had gamma knife radiosurgery done which has hopefully got rid of the mets, I'm having a body ct scan tomorrow to check the lung cancer and have an MRI scan at the end of june on the brain to see what's going on, it is all a worry but try and stay as positive as you can I wish you all the best

Take care Justin 

 

[BridgetO]

Hi Kevin and welcome. I'm sorry to hear about your wife's diagnosis and mets. It sounds like they're doing all the right things. I'm glad you found us and I hope we can be a support to you. Let us know what questions you might have and how else we can support you. We well know that sometimes a person just needs to vent! Keep us posted and hang in there.

Bridget O

[Karen_L]

Welcome, Kevin. It's a scary time. It sounds like your medical team is on top of it, though. May I suggest that you check to be sure the oncologist is a lung cancer specialist? There's so much new information every day that a physician needs to focus on the field in order to keep up with it. 

Best of luck. 

Karen

[Lisa Haines]

Hi Kevin

 Your  wife’s Case sounds very familiar to mine. I ended up going to the ER back in March 2015 with a very sudden and severe onset of what I thought was vertigo.  An urgent CT scan was done and the ER doc came in and told me I had a brain tumor, my first thought was that I had glioblastoma because I had lost a cousin to it just one year prior. 
 

I was transferred to a larger sister hospital and spent the first week in a neurology unit having multiple test done and ultimately learned that I two had stage four non-small cell lung cancer which later turned out to be KRAS positive.  
 

My first treatment was stereotactic radiation which was very effective and cleared the brain mat which to this day -,thankfully has never returned. I later started on chemotherapy (Carboplatin and Pemetrexed) which was pretty much all we had at the time and did quite well for a few months, but when I was switched to Pemetrexed  to maintenance.  
 

By the fall I had a very aggressive tumor and we knew I needed another treatment - that is when my oncologist suggested I go on immunotherapy “Opdivo” Which had just recently been FDA approved as a second line treatment without any need for high PDL1 - Back when I was diagnosed they didn’t test for PDL1 so I never knew at the time what mine was so this made the most sense.

I also had 10 rounds of radiation to my chest chest before I started the Opdivo.
 

My first scan was in February and we saw a lot of shrinkage and we were very pleased with how well it was working. I continued but ultimately start having side effects and the most concerning was low-grade pneumonitis, this is something that can be a common side effect and also become serious. In my case it didn’t get to that point but by August I had my third bout with it even though it was totally asymptomatic it would show up every time I had a CT scan and there was a lot of inflammation in both lungs.  By this time I was stable so they decided to stop the immunotherapy even though the standard treatment. Is two years. I was on it for nine months and it was a lifesaver for me. It’s now been almost 6 years since that last infusion and I am now NED And have not had any treatment since August 2016. I still see my oncologist on a regular basis, I have port flashes every six weeks, labs every 12 weeks and Scans currently now every six months.

Until you have the biomarker results you will not know if this may be an option, but if it is I would highly recommend it. Most patients now start with a triplet which is a combination of two chemo meds usually Carboplatin And Pemeytexedvalong with Keytruda which is another immunotherapy drug very much like Opdivo.

I definitely started out with a very poor and grim prognosis, but so much has changed in those last seven years and I am very thankful to be doing well and hope and expect to be a long-term survivor for many many more years. There is some new studies that seem to indicate when people have this type of response to immunotherapy it actually may in the very near future be considered potentially curative. I hope every day that will be the case!  
 

Welcome to LUNGevity an amazing support system for all those touched by Lung cancer.

 

in addition to the form we also have several Facebook groups and I tend to be in those groups more often. There is one specific to support and awareness which is the main group and then there are also groups specific to mutations if and when you find out which mutation she has she may find one of those groups to be very helpful. On top of that we have what is called virtual meet ups with your hosted weekly on zoom and you can sign up for those on the main LUNGevity page.  Fantastic group of survivors and caregivers who come together to chat and  fellow survivors and family members.

Wishing you both a very best. Welcome to the group that no one wants to join!

Lisa

 

 

 

 

 

 

[KF1]

Met with the oncologist yesterday to go over PET and biomarker results.  It was a positive meeting.  PET indicates mass in lower right lung lobe, lymph involvement primarily within the hilarity and mediastinal region.  One small spot in right shoulder blade.  Her cancer actually has 2 bio markers. Met exon 14 skipping and PD-L1.  She will starting with Tabrecta as her first line treatment.  Tabrecta can also apparently cross the blood-brain barrier so may have some impact in eliminating any residual brain mets.  

Its amazing to me that she had no symptoms until the neurological ones.  She had ten lesions in brain.

 

 

[Tom Galli]

KF1,

Oh my! I didn't realize your wife's extent of brain mets. Hopefully, radiation did most of the elimination and Tabrecta will keep recurrence down. Most of us with  lung cancer have PD-L1 expression in biomarker results. It is (or was) an indicator of immunotherapy effectiveness. I'm not sure how accurate it is these days.

Stay the course.

Tom

[KF1]

Brief update re: my wife.  Has been on Trabecta for 15 days.  As of now periodic fatigue appears to be the sole side effect.  Will have f/u PET following 3 months of treatment.  She has had significant hair loss as a result of her WBRT.  Brain MRI scheduled for later this summer to assess efficacy of brain radiation.  Keeping our fingers crossed that she continues to tolerate the Trabecta well.  

We both like her current Oncologist.  However we are setting up a second opinion at Moffit in Tampa.  They apparently have a couple of docs there who specialize in the MET mutation that she has.  So now it is sit back and wait.

[Rower Michelle]

A belated hello from me.  Kevin it sounds like you’re doing all that you can and obtaining a second opinion at Moffit is a good idea.  You may not be aware there is a patient advocacy organization dedicated to MET called “The Met Crusaders”.  You can find them on Facebook and Twitter.  It’s an excellent resource for real time peer support.   
Michelle

[KF1]

Thanks for that heads up. I had checked their site and it was where I became aware of the MET docs there. 

[KF1]

A setback for my wife.  She unfortunately has contracted COVID,  despite being vaxed and boosted, and had to be hospitalized due to low O2 levels.  She appears to be on the mend.  She has been on low flow supplemental oxygen and they debated releasing her today.  However the infectious disease doc wanted her to complete the 5 courses of remdesivir.  Hopefully if she continues to improve she will be out Thursday.

My concern is that they stoped the the Trabecta while dealing with COVID.  I hope that she will be able to restart as soon as she clears the COVID virus.  I was wondering if any of Trabecta users have had to deal with this.

[Judy M2]

Kevin, so sorry that your wife is going through this, and I hope she recovers quickly. I know that some people on my EGFR targeted therapy have to go off it for one reason or another and then resume. Be sure to let her oncologist know about her Covid treatments so they can determine when to restart. 

[Tom Galli]

Kevin,

I'll add my concern for your wife and the COVID caused delay in treatment. I don't have personal experience with Trabecta, but delays in lung cancer treatment are common. I hope your wife's treatment resumes promptly.

Stay the course.

Tom