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Lisa Haines

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Everything posted by Lisa Haines

  1. Immunotherapy has been my life saver! I hope it will be very effective for you! I’m a 7 1/2 year survivor thanks to Opdivo which was my second treatment!
  2. Thank you for sharing, I’m happy to say that I have never fit and use the statistics for lung cancer and have never really tried to focus on them. I am now at 7 1/2 with Stage IV and despite starting out with a very grim prognosis I am doing well and have now been off treatment for almost 6 years. I do remember looking briefly at the statistics when I was first diagnosed and it was depressing and overwhelming so from that point on I was determined to beat them ! 🤍
  3. 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
  4. Very happy to hear your good news and hoping each day will continue to show positive results! We Love hearing abou good scans ! YAY! Take Care Justin and best wishes!
  5. 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
  6. 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!
  7. 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 -
  8. Tom, This is very endearing and so well written ! ❤️ Thanks for sharing with us all! May Teri now forever be free and at peace!
  9. 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!
  10. Congratulations on such a wonderful milestone! 18 years as a Stage IV Lung Cancer Survivor is fantastic! Something we all HOPE and want for all! May you have many more years and hope you are safe and warm. Snow and Freezing Rain here too and after last week's blizzard I'm sick of winter!!
  11. I feel the same! I'm not sure I'll ever be convinced that having Scanxiety is character building...so me it's stress building...PERIOD!
  12. Ro, I am so happy that this worked well for you and also HOPE it will continue. I first learned about the abscopal effect when I was on Immunotherapy which I had just after radiation (after progression) and there were studies that also showed that it can happen when you do Immunotherapy right after or in conjunction with radiation. Not sure if that is WHY I had such a good result, but I did and I am so thankful to my Oncologist for being such a great researcher! I truly believe she saved my life! Lisa PS: Very creative to call this the Roscopal effect! 💜
  13. I've had two bronchoscopy one in 2015 and one in 2016 and in both cases I was totally out. Both procedures were totally painless and I woke up feeling fine and was discharged an hour later.
  14. I signed up and will be looking forward to learning more. Hope to see more of you there!!
  15. There can be a lot of confusion regarding the two programs offered by Social Security for those who become disabled. SSDI (Social Security Disability Insurance) is for those who worked and paid into the system and then become disabled and meet the SS's criteria to be considered disabled. Generally, you need to be considered unable to work for a least one year. IN my case my Disability date was the last day I worked. I was approved in about 2 months, but needed to wait for the sixth month to start receiving my monthly benefit. My understanding is that Stage IV Lung Cancer is approved quickly, but again, you'll still have to meet your waiting period before benefits start. SSI (Social Security Income) is also a program for the disabled and provides additional funds for those who have very limited assets and income. In most cases if you are married and have a working spouse, you would be denied, because they look at "family income". The asset level is very low, under $3,000 and that is also based on family assets. It's basically for those at poverty level. If however you are eligible there is not waiting period, so you'll start benefits much sooner. In many States this also makes the recipients eligible for Medicaid (low income insurance programs that each State offers). Check the rules for your State to see what you may be eligible for. I always share this link https://www.ssa.gov/benefits/disability/ to the SS website, which has many more details. You can apply online and/or call your local SS office for more specifics, especially now with Covid, as I would assume many of the offices may not be staffed. Good Luck!
  16. 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.
  17. Lisa Haines

    Covid and me

    Thank you Deb! ❤️
  18. Lisa Haines

    Covid and me

    Two are my round trip to Hope Summit 💜 !
  19. Lisa Haines

    Covid and me

    This is story I did with LUNGevity - I was very honored to be given the opportunity to share my how Covid has changed my life, especially as a Lung Cancer patient. I'm sure most of you can relate. COVID and Me By Lisa Haines When I was diagnosed with Stage IV lung cancer in 2015, I was extremely sick and my prognosis was pretty grim. I decided then, with the time I had left, I was going to live each and every day to the fullest. I wanted to do all the things that my husband and I had always talked about doing when we retired, such as travel and spend more time with family and friends, while I was still healthy enough to do so. Luckily, I responded well to treatment and have since been stable and doing well. I have been able to do a lot of the things I decided I would do and crossed many things off my bucket list. In fact, I had planned to celebrate my 5-year Cancerversary in Vegas with family and friends in March 2020. Unfortunately, that’s when the COVID-19 pandemic began. The pandemic has really inhibited my mentality to “live each and every day to the fullest” and taken away my ability to do my bucket list items. I imagine this change in mentality is something that many people with late stage cancer are facing right now. As cancer survivors, we are an incredibly vulnerable population. It’s important for people to realize how significant the risks for lung cancer patients are. Many pre-existing diseases are risky, but many of us with lung cancer have damage to our lungs already or have had a surgery and only have one lung, making the risk of serious illness worse for us. A lot of people don’t seem to understand this. Worse, some people seem to think that because we are so vulnerable, we should just stay home until the vaccine is available. What they don’t understand is that we already have our life expectancy cut shorter than we ever expected. It feels like COVID is stealing more precious time from me in so many ways. It’s a near-impossible catch-22 that this virus has put us in: try to protect your health but also live at the same time. That’s why this pandemic has been really difficult for me. The hardest part is what the virus doesn’t allow you to do. Prior to March 2020, I spent about 20-30 hours a week babysitting my grandkids, who live close by. I would see my 86-year-old mother, who also lives nearby, often. I would visit my son, who lives out West, several times a year. Once the virus hit, I stopped doing all of these things. I felt trapped in my house. As time went on, it was harder and harder to stay isolated. I would do video calls with my family, but it would just make me feel worse because it wasn’t the same. It became a quality of life issue for me. I am looking at my life in a shorter span to some degree, yet someone was telling me that I can’t see the people I cherish in the time I have left. Another added stress for me is that my husband is an essential worker and was still required to go into work each day. We of course took added precautious to ensure he wasn’t bringing home the virus, but there’s no way to be certain; there are just so many unknowns. I’m not sure what I would have done if he did get the virus. It’s really difficult to be in the same house and not touch things. All you can do is hope for the best and frequently hand wash. For me, managing the virus precautions while living with lung cancer ultimately became balancing living life and staying alive. I decided to talk to my doctor about the possibility of seeing my family again. He asked me many questions and ultimately, based on my responses, he was able to understand my need to be with them and gave me his blessing to do what I felt was safe for me. He explained that when COVID starts to affect our quality of life, it is important for lung cancer patients to make choices that they feel are best for them. I am lucky to be stable, off treatment, and not currently immunocompromised, so I decided it as best for me to see my family again. It was my choice to decide what I wanted; I made the choice to live my life. At first, I only saw my family outside and with masks. However, the day my youngest granddaughter cried because she didn’t recognize me, my heart broke. A week or two later, I started to go inside their home. I used extra sanitizer and washed my hands constantly. As I began to feel safer and the COVID case counts in our area went down, I resumed my normal life with them and go to their house on a regular basis. I consider it my second home. We do our best to take precautions, but I know I’m taking a risk. However, for me, quality of life wins out over COVID. I think the best advice I can give for someone struggling is to try to keep as busy as possible. I have used the extra time to keep more involved with advocacy for lung cancer. I even became a LifeLine mentor. I have also been joining the Virtual Meetups; they offer great support and are super helpful for people who might not have family nearby and feel isolation. While things have improved since the spring, I am starting to worry about winter. Right now, we spend as much time outside as we can. I’m not sure what we’ll do when it gets colder and that’s no longer possible. I will very likely need to isolate again this winter and that’s scary and sad. Currently, I have 5 airline tickets that are waiting for me to use. Every day I stay Stable I am hopeful that the time will come for me to be able to use them again. I hope for a safe and effective treatment for Covid, so that it’s safe for us all to get back out again. I look forward to the day that Covid is a bad and distant memory for all. It's not only stealing time, but as also taken far too many precious lives - such a devastating virus in so many ways. About me: Lisa Haines is a Stage IV lung cancer survivor who lives in Northeastern Massachusetts with her husband and two Rescue Chiweenie Dogs. She is Mom to two amazing adult sons, one living locally in MA and one living in CA. She’s been blessed with two sweet granddaughters, Harper now 3 ½ and Hazel who turned 1 this summer. Her grandchildren came into her life after her diagnosis and truly were a dream come true. At the time of her diagnosis, she did not have any grandchildren, but being a “Nanni” was something she dreamed of for many years and they have added even more joy and love to her life. They are now another huge inspiration in her cancer journey. She plans to be here for many years to watch them both grow up. Other than spending time with her granddaughters, family and friends, she also enjoy travel and can’t wait to be able to get back out to San Diego to see her son. She enjoys supporting other lung cancer patients and is very active with LUNGevity. She is also a moderator for two other Lung Cancer Support Groups on FB. Advocacy has become especially important to her and it’s something she wants to pursue long term.
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