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Lisa Haines

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  1. Like
    Lisa Haines got a reaction from RosieSD in Introducing Myself   
    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. Like
    Lisa Haines got a reaction from Justin1970 in LexieCat/Teri Updates   
    Steph,
      I am so very sorry for your heartbreaking loss.  Keeping you and all of your Mom's Family and Friends in my thought.   May she now forever be pain free and at total Peace ❤️ 
  3. Sad
    Lisa Haines reacted to KF1 in Introduction   
    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.
  4. Sad
    Lisa Haines reacted to G.A.M. in Well, just damn.   
    I was NED in early Feb, and my subsequent CT was scheduled for late July.
    I've been getting light-headed when standing lately and passed out Tuesday evening, hitting the floor hard. I broke my right wrist, my eye socket fractured, badly bruised my right hip, and a tiny brain bleed. A CT also revealed a 2.5cm mass in my right lung and 2 impacted lymph nodes.
    So here I am again.
    Hearing it now was easier than the first time, but it stripped me of my hope, which really hurt. When I first heard the news, I asked for two things. To see my grown son again and to watch my baby daughter graduate from college with her engineering degree. Both happened in May, and I'm good to go if I must.
     
  5. Like
    Lisa Haines got a reaction from Deb W in Introduction   
    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
     
     
     
     
     
     
  6. Like
    Lisa Haines got a reaction from Justin1970 in Introducing Myself   
    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!  
  7. Like
    Lisa Haines got a reaction from catlady91 in Introducing Myself   
    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!  
  8. Like
    Lisa Haines got a reaction from Judy M2 in Introducing Myself   
    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!  
  9. Like
    Lisa Haines got a reaction from Pstar in Introducing Myself   
    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!  
  10. Like
    Lisa Haines got a reaction from Tom Galli in Introducing Myself   
    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!  
  11. Like
    Lisa Haines reacted to CH29 in Introducing Myself   
    Hi Gautham,
    Just chiming in here as well.  My husband received a diagnosis this year that sounds similar to yours, age 45, two teenagers.  He has just had his 5th round this week of Alimta/Carboplatin/Keytruda.  The scan results show that this is working to reduce the cancer.  I believe he will have one more of the same and then they may change the meds but am not sure to what exactly.
    I understand the shock of it all, I do think it can be helpful to know that you are not alone and find others in the same situation sometimes.  I find reading other's positive stories is very helpful.  
  12. Like
    Lisa Haines reacted to Tom Galli in Introducing Myself   
    Gautham,
    Welcome here.
    Sometimes there are good chocolates in the box and one is fortunate to enjoy them. Indeed one never knows what future life challenges will be encountered. But, and thankfully, these days we know a great deal more about treating lung cancer and your immunotherapy treatment, Keytruda, is a very effective method indeed. I know so many survivors with Stage IV diagnosis who've had Keytruda and are now no evidence of disease (NED), our gold standard of therapy.
    Keyturda is so effective, folks are even moving away from need for the drug after the immune system becomes trained. @Lisa Haines is one of those folks. There are many more.
    Stay the course.
    Tom
  13. Like
    Lisa Haines got a reaction from Izzy in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thanks for the update - hoping for positive scan results!  So sorry you need to wait so long to get them, waiting for me was always the hardest part. Please take care!
  14. Like
    Lisa Haines got a reaction from LouT in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thanks for the update - hoping for positive scan results!  So sorry you need to wait so long to get them, waiting for me was always the hardest part. Please take care!
  15. Like
    Lisa Haines got a reaction from LouT in It's just one thing and another!   
    Hope you're feeling much better!  
  16. Thanks
    Lisa Haines got a reaction from BridgetO in It's just one thing and another!   
    Hope you're feeling much better!  
  17. Like
    Lisa Haines got a reaction from Justin1970 in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thanks for the update - hoping for positive scan results!  So sorry you need to wait so long to get them, waiting for me was always the hardest part. Please take care!
  18. Like
    Lisa Haines got a reaction from Cody foote in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thanks for the update - hoping for positive scan results!  So sorry you need to wait so long to get them, waiting for me was always the hardest part. Please take care!
  19. Like
    Lisa Haines got a reaction from Tom Galli in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thanks for the update - hoping for positive scan results!  So sorry you need to wait so long to get them, waiting for me was always the hardest part. Please take care!
  20. Like
    Lisa Haines reacted to BridgetO in It's just one thing and another!   
    Hi all! I just got out of the hospital for something not cancer-related, at least not lung-cancer related. I went into the ER because of severe abdominal cramping and vomiting and it turned out I had a small-bowel obstruction, most likely due to scarring or adhesions from my surgery and radiation for gynecologic cancer. That was 11 years ago and this is just turning up NOW? I'm indignant! I really should be grateful that this hasn't cropped up in all this time, since it's not rare after pelvic surgery.
    Fortunately, they were able to get this sorted without surgery, although it involved some uncomfortable procedures. As a survivor of 3 primary cancers, I'm used to those as I'm sure all of us on these forums are. 
    I'm on a limited diet, not sure for how long. It's kind of like what I ate when I had the chemo with concurrent radiation. (low fiber, soft foods, etc) Or rather what I couldn't eat.(most everything I liked). At least this time I can eat dairy products! Yay for ice cream! so long as it doesn't have any lumps of good stuff in it. 
    Being in the hospital in the age of Covid is an additional challenge: overworked nurses , many of them travelers: overworked everybody else;  no visitors when you have a shared room , etc.
    Guess I'm just needing to vent. I'm grateful it's not (another) cancer and that I'm alive and NED after 3.
    Bridget
     
  21. Like
    Lisa Haines reacted to Justin1970 in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Thank you cody your an amazing son and a best friend you have been a great support, I'm very lucky to have you by my side I love you so much it hurts, I couldn't have done any of this without you and the rest of my amazing family x
    Loads of love 
    Dad xxxx
  22. Like
    Lisa Haines reacted to Cody foote in My Dad's got Stage 4 NSCLC, with brain metastases to the Brain   
    Hi everyone, its been a while since my last update on Dad. Dads doing really well, the oncologist team are certain that the Gamma knife surgery has been successful and have now put dad back to Stage 3b which is just fantastic news! We're hopeful that Dad will stay at Stage 3b and continue improving and getting better. He's now been off his steroids for 2 weeks now and he's still doing amazing. His arm and his leg are still working as normal. Which is an absolute positvie. I'm so proud of Dad. He's come such a long way with his journey. And has smashed every hurdle thrown at him.
    He had a Ct scan on Monday and are now awaiting for results. Which can take 10 days. Which is a pain! But we've all got our digits crossed. And praying for continous shrinking with his lymph nodes and his lung tumor. Thank you all for your support with Dad, this site has been a real help during this dreadful and upsetting journey. We hope that our journey will help others as much as you've helped us.
    many thanks Cody x
  23. Like
    Lisa Haines reacted to Justin1970 in Stage much worse than I expected   
    Hi lily 
    Sorry to here how sad and depressed you are it is a horrible time but please try and stay strong I know it's difficult but you will get through it, I was staged at 3b and went through all the same feelings as you are going through but once the treatment starts you will feel a bit better knowing something is being done to help you 
    All the best and take care 
    Justin x 
  24. Like
    Lisa Haines got a reaction from LouT in Introduction   
    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
     
     
     
     
     
     
  25. Like
    Lisa Haines got a reaction from BridgetO in Introduction   
    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
     
     
     
     
     
     
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