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Lisa Haines

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Everything posted by Lisa Haines

  1. Crying is absolutely normal and it may come and go for months. If you feel extremely depressed, please reach out to our Oncology Team as most centers have counselors on staff that you can meet with. LUNGEvity also hosts Virutal MeetUP several times a week, which are wonderful -- they are all full of Lung Cancer Survivors ! You can sign up at think link - https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups I HIGHLY recommend them and have been attending them several times a week since they first started. I am sorry you have had to join a group that NONE of us ever wanted to, but you will find an amazing amount of support with LUNGevity. I am a Stage IV NSCLC Patient who was diagnosed in early 2015, which a brain met, lung tumors and a pulmonary embolism. I was very ill and and had a grim prognosis. Today, now almost 7 years later, I am (NED) NO Evidence of Disease, and doing well, thanks to various treatments. I also live in MA -- I'm on the North Shore in Rockport MA and am treated through the Lahey Heathcare System. Please know you are NOT alone, we ALL have felt how you do now! I wish you the very best and hope you'll come see us on zoom. ~ Lisa NOTE: This Friday at the 1:30 PM EST Lunch Bunch Meet-Up we will have a special guest, Julie Larson, LCSW who will be discussing (Coping with Cancer) If you think this would be of interest, please be sure to register for the Meet-ups to that Nikole can forward along the Zoom Link to you! We do not have experts every week, but but seeing we are this week I thought it might be the perfect week for your join us. You can also sign up to be connect with a Patient Mentor and they will match you with a patient who has a diagnose similar to yours -- You can do that with Nikole (LUNGevity) at this link - https://www.lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/lifeline-support-partners/lungevity
  2. 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!
  3. I contacted my Oncology office when the talk of "boosters/third doses" first started and he recommended that ALL his Lung Cancer patients get a 3rd vaccine once they reached the six month mark which for me was in mid September, so I booked my 3rd Pfizer online a local CVS and like Lexi I answered "I don't know" to the question about being immunocompromised. I do not think I am, but who knows. I had the third dose and felt much like I did after the second, (sore starting that night, and the following day felt very fatigued, had a dull headache and some muscle and body aches) I took Tylenol and it lessened and by evening I felt must better. After the latest CDC update I was also now able to book my 65 year old husband for this third Pfizer and he'll be getting it next weekend. Sounds like ALL Pfizer cancer patients, and those 65 and up, plus anyone at high risk is now eligible (Pfizer only) at this time. I had also read that the Pfizer vax losses efficacy faster than Moderna. I do feel better now that I have had three and know many LC patients who have. Even many who originally had Moderna, I suggest everyone talk to their PCP or Oncologist and go with their guidlance. As for masks and I have been wearing a mask "inside" all along and never stopped. It's started be be mandated herw in some places again, but NOT all, however it is highly recommended. I tend to double mask I wear a surgical mask, and then a cloth mask with an inserted filter over it. I toss out every surgical mask and filter after each use and wash and sanitized my cloth mask after every use. I have a few KN95, but they dont' seem to fit me as tightly ? Surgical alone seems to flimsy so I like adding the cloth with filter over it for the best fit. PS LUNGEvity is hosting a FACEBOOK Live with a group of experts relative to Covid and Vaccine this coming Tuesday at 7PM Eastern on the main LUNGevity Page -- https://www.facebook.com/lungevity/photos/a.424328797859/10159099360662860/
  4. Hi Cordelia, Welcome and Happy your found this wonderful forum and LUNGevity. You'll find lots of amazing support here as well as in the EGRF Groups! I am sorry to hear that you are already having trouble with denials and "EvilCORE" and hope the information that Michelle and I have shared will help you get these issues resolved quickly. Believe me you are not alone in dealing with this, nonetheless it's terrrible and not something someone recently diagnosed needs to deal with. I wish you the very best and hope by now it's been resolved or will be soon. I'm a Stage IV NSCLC Survivor and I have the KRAS 12v Mutation and we do not have a drug that can target it, so I had standard treatments and did excellent with Immunotherapy. To read more of my story you can click on my name and read my bio. I'm happily now NED (No Evidence of Disease) and going on 7 years of living with Stage IV I hope you'll be very pleased with the support this group can offer. Please check out the LUNGevity Virtual Zoom Meet Ups which are hosted several times each week. For more information and to sign up -- go to this link https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups Best wishes, Lisa
  5. Oh My Gosh! "Evil Core" strikes again! They are ruthless and are absolutely horrible to deal with. I swear they love to add extra stress and upset into our lives. PLEASE do not give up and fight for what you deserve and should have. I can't begin to tell you how many people have had this company deny claims and services. But, if you and your care team are persistent, MOST case will quickly be overturned and you'll be approved. When they denied my Hip Surgery (just days before I was having it and after I had completed all my preop testing), I was most upset. We all quickly got on phone and starting complaining to our doctors and insurance carriers. It was a really pain in the butt, but I was NOT about to cancel my surgery and I knew they were playing some "game" trying to deny it. Turned out, they had not even read my doctors notes correctly and had denied a totally different procedure than what I was having done? My surgeon had given them the correct information and the correct diagnosis codes, but they somehow "read it wrong" and instead of double-checking it was denied? They make mistakes like this often and and it comes back on the patients, which is awful and sickening. I am so lucky that I'm not on Medicare and will NEVER have to deal with them again, but I do sympathize with you and countless others who have to deal with them. I HOPE you will fight and do whatever is needed to get the care you need ! Yes, call them and make sure your Oncology team is on top of it too, most doctors know of them. We read a long Twitter feed where several docs in various fields were all complaining about these crazy denials. They are now well known and it needs to be stopped ! Please se sure to let us know how it goes! I wish you the very best!
  6. To Port or Not to Port! My thoughts and experiences -- I am a Stage IV Lung Cancer patient/survivor now at 6 1/2 years since my diagnosis and I have had my port (Port A cath) now for over six years and can NOT imagine cancer treatment without one. I should also say that I was a person who was always considered a "hard stick" which meant that blood draws and IV's were always very difficult and quite uncomfortable for me. In my case and at my local hospital they use my port for routine lab work, infusions and also for the IV contrast dye needed for CT Scans. And even though I'm now out of treament and no longer having infusions, I'm still very happy I have my port. I do go in for routine "flushes" which is very important if you port if not accessed on a regular basis. For me it's now scheduled every 6 weeks - prior to Covid it was every 4 weeks, but after and during Covid, when people were far more concerned about going in to hospitals, they did some research and found it was perfectly safe and fine for most people to have flushes every six weeks and in some cases even every eight weeks. I would not recommend going any longer than that, but this is something you can discuss with your team. I've also had surgery three times (non cancer related) and they used my Port in the hospital for my IV's, for Anesthesia and anything else I needed. Truly a blessing for me because before my port every IV or draw was so painful and often required mutliple sticks, extra bleeding and bruising. One trick I did learn (thanks to my neighbor who is an IV Therapy Nurse) is that IF you are a hard stick and you do not have a port, please tell your team about this and instead of becoming a pin cushion, it's fine for you to advocate for yourself and ask that an IV therapist professional starts your IV. They are typically readily available at any hospital. Not sure much in a doctor's office, but it is something I learned to ask for and it made other IV's and lab draws so much better. These folks do this ALL day long and they are the best and finding a vein. Another thing to mention is that there is specialized training required for those who do and can "Access" a Port. Not every phlebotomist has this training and a port should never be accessed by someone who is not specifically trained in Ports. It requires a special prep and also a Heparin Flush. A simple alcohol pad is NOT at ALL sufficient and it would be very risky for some to access your port without the proper training and following the proper protocol. A port is a "Central Line" and requires special care. I have found at that at my hospital the tech in CT are NOT allowed or trained to access a port, but they will happily call in someone from Oncology or IV Therapy to due so. The same applied when I had surgery. The regular OR nurses are trained to start a normal IV, but not port access and in those cases they did need to call in the IV Therapy folks, but it was never a problem and they were happy to do so. If uou have one, using it is best and there is no point in having someone stick you 3-4 times, when you have a port! My Oncologist has told me I can have mine removed, now that I'm not having infusions, but I said "No Thank you". For one thing I feel it would be a jinx and for another and more important I love having it and how much easier it makes blood draws and IV's! As long as it continues to work well, is being flushed or used on a regular basis and is not causing any problems, it's fine to keep it and that is my plan. I LOVE my port and it's a keeper. NOTE: Ports also need to be surgically implanted by a surgeon, often a vascular surgeon. It's a pretty simply and short procedure in most cases you will be "sedated" and now aware or awake during the procedure. It can be tender for a few days, but quickly heals and can be accessed pretty quickly. I also use a "numbing cream" on mine, called EMLA which is provided by my Oncology Center. If not provided, most Oncologist can write you a prescription to pick up some at your local drug store. It contains Lidocaine and makes a Port stick painless. My Port has always been a bit sensitive and without the cream it can be a bit more uncomfortable, but it's also very brief and there are times I forget to use the cream and it's still fine, but for me it's better and totally painless if I use the EMLA topical cream https://www.webmd.com/drugs/2/drug-2358-8170/emla-topical/lidocaine-prilocaine-cream-topical/details) . I typically apply the cream about an hour before any access and then cover it with a clean "Tegaderm" type clear dressing, which are also provided to me by my team, but can be purchased online at places like Amazon (https://www.amazon.com/3M-Tegaderm-Transparent-Film-Dressing/dp/B000PYP5R4/ref=pd_bxgy_img_2/133-1918719-2708145?pd_rd_w=HXO9Y&pf_rd_p=c64372fa-c41c-422e-990d-9e034f73989b&pf_rd_r=T28VXK5QS0B5EHDTBB03&pd_rd_r=0a2cb494-7f77-4b5d-966b-61f1821630f9&pd_rd_wg=etcPC&pd_rd_i=B000PYP5R4&psc=1) and at some drugstores. Port is also a shortened name for "Port-a -cath" and you can find a definition of a Port-A-Cath at this link: fhttps://www.cancer.gov/publications/dictionaries/cancer-terms/def/port-a-cath There are a few companies who make them and I have what is known as a "Power Port" which is important as you will need a Power Port if you plan to use it for Contrast for your CT Scans. A PowerPort is a type of port which can withstand higher injection pressures that are needed to receive the CT contrast dye. To the best of my knowledge, most ports are now "Power Ports" but it's a question you may want ot ask before you have one implanted.
  7. Great Article ! I've bookmarked this to share with others because this is a question that comes up often in groups!!
  8. I agree totally and it's huge Pet Peeve for me, as well! Insurance companies should NOT be in charge of our treatments and I'll always fight to get the best possible treatment.
  9. Thank goodness for the compassion and generosity of the drug manufacturers -- They often the the most helpful in these of situations. I'm very happy they are providing the drug for her and hope they will continue for as long as it's needed and is effective. I have been through previous denials with a Commercial Insurer and the "darn" companies they hire to review procedure and claim and it was so upsetting and stressful to find out the in my case (Much needed surgery was denied as not being medically necessary). I was so angry and upset as this happened to me only days before I was scheduled for the surgery and this was surgery I had to put on hold due to Covid and had waited months to have. My Husband had booked time off and we had all the plans in place to have the surgery on a planned date/time when Covid cases here were low and I felt it was safe. TO learn less than a week before surgery, after I had already had all my pre-ops testing and labs/consult that my surgery had been denied was beyond belief. Thankfully my surgeon and I made several frustrating calls and a peer review was rushed and ultimately they did approve the surgery. But get this, the reason it had been denied was ALL an error, because some "doctor wannabe" who works for the review company incorrectly read the procedure that was being done and flat out denied it? ALL because some one did not take the to read the "actual" procedure. I later did some research and learned that this happens more often than not and that many of these "medical reviewers" are "medical professionals" who never made it through "medical school" and are even always actually educated enough the make these types of decisions. It was a huge wake up call and one that I reported to anyone who would listen. To this day, I've yet to receive a formal "apology" form the insurer or their review company and now that I no longer have that coverage, it's sadly not likely that I ever will. But I have reported it to my local legislators and to send an letter to both the insurer and the review company to complain about their lack of empathy, especially to a patient dealing with Stage IV Cancer. I was irate and started to wonder IF I had actually been denied because I am living with "terminal" cancer. My surgery was not cancer related but was very routine "hip replacement" and I had already had my other hip replaced 4 years prior without any denial or question. It was very clear that this was medical necessity and very annoying to have it denied ALL in error? Or was it? I'm not sure I'll ever truly know the true facts in my case. It totally caused unnecessary stress and aggravation to my and also to my surgeon. So......never giver and fight hard to get the coverage that we deserve. You may just find that the denied was a mistake? I know with Medicare this process may be for more difficult, but I would still fight it as hard as possible to prevent it form happening to others. I do not feel any insurer should stand between cancer patients and care they deeply need. Okay.....RANT OVER!
  10. 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! 💜
  11. Ale - I am very happy to help and I sincerely to wish you the VERY best!
  12. PS: I never had a mutation that was targetable myself, I have KRAS v12G and there is not treatment specific for that or any great clinical trial. However, I had a excellent response to Immunotherapy and I am now NED and just celebrated my 6th Cancerversary earlier this week. There are many Stage IV patients living long lives and being treated as if we have a "chronic" health condition. I HOPE you too will have a wonderful response to your treatments. My outlook started with Grim as I also had a brain tumor and pulmonary and it all came on with no warning or symptoms. You can click on my icon to read my full story! Lisa
  13. Dear Ale I am very sorry that I somehow missed reading your story! Please know that many of us here are doing well with Lung Cancer even those of us who are Stage IV. It does however break my heart to think of someone as young as you (22) having to go through this. It is never easy but you are so young and for me that always seems to make me feel very sad and that it's very unfair. I hope very much you will do well with your treatments and know it can take time to find the one that works best for you. You have come to a wonderful group and you'll find lots of support here as well as in any of LUNGevity group on Facebook. Please know we ALL care and will be keeping you in our thoughts. Please know that this can all feel very overwhelming in the beginning -- there is just so much going on and it's LOT to take in and deal with. Please don't hesitate to reach out for more support -- we all TRULY understand how you feel. Sincerely, Lisa
  14. I learned I had a Pulmonary Embolism while going through testing for my brain tumor (which was how I first learned I had Lung Cancer back in March of 2015). I had absolutely no symptoms or warning and it was a total shock and I was so lucky it had not caused me any damage. It was found when they did my very first Chest CT Scan to look for lung tumors. At the time I was already in the Hospital because of the brain tumor and they immediately put me on IV Heparin. When I was discharged a week later I was put on twice daily Lovenox Injections and then later that year switched to Xarelto which I will now be on forever. I have been told that PE's can be fairly common in Lung Cancer and once you have had once you risks is higher of having another. Ironically, one of the gals who Zooms with us each week on the LUNGevity Virtual Zooms was complaining to Shortness of breath last Wednesday which was very new for her (no pain) and she was also on antibiotics and did call her doc, but was told it was likely a side effect from her chemo treatments and the antibiotics. Luckily she had a chest CT scan last Friday which found she has a rather large PE, she was on Zoom with us Friday when the report from her scans was posted to her portal and she read it to use and we ALL immediatley told her to get off, and go to the closest ER. She took that advise ( she had already placed a call to her Onc, but had not heard back), Thankfully she went right in and she ended up being admitted put on IV Heparin and later that night had a surgical procedure to remove the clots which were very large and were putting her heart under stress. She is SO lucky and thankful she went in and is now on the road to recovery, but it was SO scary to know that those were there and IF not for the CT Scan that day, she could have ended up in serious condition. Anytime there is ANY question of a PE or clots in the legs, PLEASE seek emergency/urgent care -- clots are NOT something that can wait! Best wishes... Lisa
  15. Shella, My thoughts to out to you and I I know fear and upset of learning you may have cancer. My cancer came on with very little warning (if you lock my icon you can read my story). Thankfully, today almost six years after being diagnosed with Stage IV Lung Cancer that had spread to my brain I am now (NED) No evidence of disease and "living life" with a chronic health condition, as are many long term cancer survivors. I wish you the very best and hope ALL your tests go well and that you do NOT have cancer. If you do, please know you've come to a wonderful group and LUNGevity and its members will be her to support you in any way we can. Best wishes, Lisa
  16. Wishing your Dad the very best! I had hip replacement surgery in September after months of pain and having to use a cane to get around. I put it off for a long time because I was scared (not a fan of surgery) and then of course had to wait for Covid to decline so I could have it. Best thing ever and now I'm back to walked well and not living in horrific daily pain! I truly hope your Dad can have his surgery and a better quality of life! Lisa
  17. So happy that you took it upon yourself to have a screening and that your cancer was found at an early stage. I never met the criteria for a screening and never had any warning or symptoms and by the time mine was found it was Stage IV! Happily with all the new treatments and Immunotherapy (my life saver) I will be celebrating my 6th Cancerversary next week and I am very happy to also be NED! (No Evidence of Disease). There are many more of us every year -- Stage IV Survivors living with Lung Cancer! I wish you the very best and hope you too will do well! ~ Lisa
  18. Unless my team is playing I always root for the "Underdog" and in this case KC was favored by 3 pts, so I want to the Bucs, but I'm also a huge fan of "The Gronk" and being from New England it's hard not to want to see Tom Brady win another ring. I think Patrick is an amazing QB and will have many good years to come. I was surprised the Bucs won by such a big spread. It was just not a good day for KC! Congratulations to Tampa Bay, yesterday they played the best game and that's why they are now the Champions!
  19. I get more upset daily and more and more people are getting the vaccines and finding ways around it! I am sick and tired of being left out here in MA and finding out there is NO SUCH as "any waiting lists" in my town, they do not even plan to have one (ever). ARGH! This vaccine rollout is extremely unfair and I'm so stressed about it ! ARGH! Good Luck to all! No one here in MA seems to care and you can bet I'll remember that at the next election!!
  20. Dear Curry, My heart goes out to you and everyone who is diagnosed with Stage IV NSCLC (even hard to hear it in your case because you are so young). Sadly, Lung Cancer can strike anyone at any age and more and more of the newly diagnosed patients are young and healthy with no know risk factors. If you have lung you can get Lung Cancer. I can tell you that I am a Stage IV survivor and will be celebrating my 6th Cancerversary in March of 2021. if you lock on my icon/name you can read my story. I had a very grim outlook, but I'm doing well and as of my last scan I am now NED (No Evidence of Disease) which I something we ALL hope for. I wish you the very best as you move forward in your treatment plan. I do know folks who go to Moffit and are very happy, but I know folks to love their local cancer centers too. You have to find the right fit for you. I also agree that the most important thing will be to keep ANY health coverage and to avoid any gaps in coverage. As already stated, IF you go apply for SSDI (Social Security Disability Insurance), it takes 2 full years before you become eligible for Medicare "A" and at that point, you'd still need to pick up Medicare "B" a MediGap plan and a Prescription Drug plan and IF you end up on 'targeted therapy" it can BE very expensive so a top plan is vital. Also keep in mind that many of the drug manufacturers do offer discounts to cancer patients for their particular medication if you meet their guidelines. You'll need to have more testing before you know if you might be a candidate for that type of treatment. I wish you the very best ! Lisa
  21. Thank you and THANKS to everyone who is reaching out to their state Legislators and everyone we can to do ALL we can to make Lung Cancer a TOP Priority.
  22. As another Stage IV patient, I would absolutely want this IF this were my case. As for coverage, does your MOM have a Medicare Part D RX Plan, as that is where this would be covered. IF Not, she may be eligible for assistance with the drug maker, but if she had Part D, it should be at least partially covered. She also can enroll, next October which is the next open enrollment period. But, she may face a penalty for not enrolling when she was first eligible. I would check into it now, just in case there is anyway she may be eligible through another special enrollment period. I f she is low income, she may quality for a State Medicaid program that will help too! Good Luck!
  23. 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.
  24. I am so happy to know Heidi, all thanks to our LUNGevity virtual meet ups. And I love the #WhiteRibbonProject, it's amazing and doing great.
  25. I sent an email to the State this morning to have them explain to ME "exactly" where I am on the list and WHY it appears that as it stands right now I'm at the very end of their Phase IB list which would potentially be in late February. I have read and heard so many News stories over the past few days about vaccines being wasted and how many states have plenty to give us ours now but that some of the planning is absolutely awful. I know it's been said that many health care workers do not want it, then pass it up to the next please and move on .Additionally when I was in Oncology last week for my Port Flush my Oncology nurses still had NOT even had their vaccines, yet my nurse told me she has two children also in the medical field (not in close patient contact as much as she is) and they both had vaccines (different hospitals/closer to Boston). I know they plan to send workers from CVS and Walgreens to Nursing Homes starting tomorrow and most of "us" will get our Vaccines at a Walgreen's or CVS, but they do NOT have it yet and they have been bombarded with calls because we the people, are not getting good info from the Government. I do live in a very small coastal community, so I realize things move a bit more slowly here, but our Covid rates are at an ALL time high and have double what they were last years when MASS was the third highest State in the country. They are planning to have drive thru testing in my town soon and I will go and be tested for peace of mind, even though I know it could change tomorrow. I'm very worried again because we stil have not even begin to see the effects from Christmas and New Years. I know many families did not get together, but many still did and they all go to the same grocery stores my husband does and he is still working, so I'm put at risk daily, despite our precautions. Unless we totally isolate and both never leave the house, we are not safe and we can NOT do that right now. s not better planned. The website is full of all kind so data on how many shipments they have and how many vaccines have been given, but gives NO data for people like us? Up until NOW, I had been very pleased with how Massachusetts has handled Covid, we closed early, masked right away and they've worked hard to keep us safe, but the plan for the vaccine roll out is awful, in my opinion and I'm not sure who is to blame or why it is so "F'd up"....but I sure hope I do not die trying to find out? I am still ticked about prisoners' being significantly ahead of us? Maybe I should go rob a bank to move up on the list??? Grrrrrrrrrrrrrrrr!
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