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Lisa Haines

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Posts posted by Lisa Haines

    Introduction

    in INTRODUCE YOURSELF!

    Posted

    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

     

     

     

     

     

     

    Justin

    in INTRODUCE YOURSELF!

    Posted

    Justin - When I was diagnosed at Stage IV with a brain met back in 2015 - my chances of living just ONE year were almost zero.  When I had significant progression my first year I came very close to giving up on any further treament and actually originally "declined" immunotherapy because it was so new and I was so afraid of going though more treatments and side effects.   The day I went in to tell my Oncologist I had decided against it, she sat down and explained it to me in a way that made it much easier to understand.  She felt very confident it would work for me and honestly was the reason I changed my mind.  I can tell you how many times I've thanked her and I credit her and that treatment with saving my life.  I know it's so challenging to not feel down and defeated, but I HOPE you will take one day, one minute at a time!

    We have come so far with treaments since then and there are many people living long lives.   As you know I'm very close to 7 years and honestly NEVER ever imagined it would be possible.  

    I sincerely HOPE we can ALL inspire you to FIGHT this monster and do not give in to it.  PS:  Do not believe all the stats you read online, MANY or very outdated and do not include the most currently treatment options.

    I WISH YOU the very best!   

        ~ Lissa

    Still processing PET scan and biopsy

    in INTRODUCE YOURSELF!

    Posted

    Lizzy

     I wanted to wish you the very best and try to offer some inspiration!.

    I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain.  I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan.

    Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy.   I am now Stable/NED and doing well.  I have been off ALL treatments for over 5 years and continue to remain stable.

    I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects.  It too, worked well.    I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it.  ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions.  I still have mine and love using is for labs and contrast for my scans.  I go in every 6 weeks for flushes!   

    I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you.  I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me.

    Take care and be well.  I wish you the VERY best!

        ~ Lisa

    PS:  When I was diagnosed I did not have any grandchildren - something I had always dreamed of.  Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life.  They are pure JOY and LOVE!   

    Justin

    in INTRODUCE YOURSELF!

    Posted

    Justin -- I posted an update on the thread that your daughter started about Lung Cancer and Brain Mets.   I hope it will help to inspire you!    I'm now close to being a 7 year survivor of Stage IV Lung Cancer that all started with a brain tumor!  

    Best wishes to you!  

    You can read my response here - 

     

    Introducing & Stage IV -- Looking for forums

    in INTRODUCE YOURSELF!

    Posted

      I am a Stage IV Lung Cancer (KRAS 12v) survivor and I was diagnosed in March of 2015 after the cancer had spread to my brain.

     I highly recommend you check out these sources.

    LUNGevity recently opened a Patient Gateway specific to KRAS which you can find Here:  https://kras.lungevity.org/

    LUNGEvity also has a Facebook page specific for KRAS folks here:  https://www.facebook.com/groups/KRASlung/?ref=pages_profile_groups_tab&source_id=50509907859

    The KRAS Kickers has a website and Facebook page and is also excellent:   Website: https://www.kraskickers.org/ and the KRAS Kickers Facebook Groups is at this link:  https://www.facebook.com/KRASCancers/

    LUNGevityVirtual Meet-ups are held weekly and now include one specific for KRAS once per month you can register for that or the general meet ups at this link - https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups

    PS:  I was Stage IV at diagnosis and that that time the cancer had already spread to my brain.  Happily, thanks to treatments I amnow NED (No Evidence of Disease and will be a 7 year survivor next Month!  (March 2022)   THINK Postiive!  

    Durvalumab

    in IMMUNOTHERAPY

    Posted

    As a Stage IV patient (now stable and doing well) 5 1/2 years after my diagnosis -- I have ONLY had ONE Pet Scan and that was done back in 2015 at the time of my diagnosis.  ALL my follow-ups scans are CT Scans and and MRI's -  (I started with a brain met).  

    I also know several others who are always have CT Scans.  I know many insurers will not cover Pet Scans as routine, since they are so costly.  I've asked many times and have never totally understood WHY some folks have so many routine Pet Scans.  I've always been under the impression CT Scans are totally appropriate for routine and Pet Scans are primarily for staging and/or done when a patient progressed.   

    I did have one BONE scan but that was more for degenerative disc disease and significant arthritis in my hips.  Both not related to my Lung Cancer diagnosis.  

    Best wishes to all with your scans -- Personally, I prefer CT Scans (quick and easy and no special prep).   IF and when I may some day have any sign of progression, then I would ask for a Pet.   

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